The Nefariouspoo of Sarah (A Field Trip into Disability Advocacy)

My First Post in 2009

2009-05-24T09:13:00.000-07:00

Not one post this year, not one post. So I blog in 2009 quite behind the times.

I will do a quick update and then, perhaps I will tell you all what is on my mind. Because that is what is drawing me to write right now. I don’t have some urgent desire to share point by point the happenings in the past six months, but rather the need to set my heart down on paper. For those of us that write, I’m sure you understand.

February 2009 – Laid off from job as technical writer – shit …..

March 2009 – briefly hospitalized (about a week) for the most gruesome headache in the world. Seriously. Terrible.Freaking.Headache. I could write more about this. Fact is they gave me fentanyl twice, dilaudid twice. And Nubain once. And nothing touched this headache. And these were given to me in a matter of hours. Finally, they gave me morphine, and while I still had the headache and was unable to walk/speak/chew/sit up, etc I was able to lay in a doped up peace not thinking I was going to die while my body is locked in agonizing pain  It was fun stuff! 1 week later I was released, no longer on IV meds, but still with a terrible headache and bruises on my bum from shots I had been given. Good stuff.

April 2009 – Baby Thia Apple Waline was born at 37 weeks 2 days gestation on 4/8/09. She was 10 lbs! 21 inches long and beautiful and healthy and perfect! She got stuck on the way out (but only for a moment, mild shoulder dystocia) but she has no blood sugar problems, she was born full term, and she breathed wonderfully. My beautiful “little” girl!

and yes, we are using cloth diapers :) Here is a cute one!

It was also this month that I was approved for a Trade Adjustment Assistance Training Program so I can complete my bachelors degree in political science. I started school full time (from part time) on May 4th, and I haven’t looked back. Although, school full time with a newborn on your lap is interesting. The program pays for my school 100%, pays 80% of my COBRA until August 2010, and pays me unemployment insurance until February 2011 when I graduate. Seriously, who turns down programs like that? It is too good to be true!

So now it is May. My family of four is now a family of five. And yet, I’ve watched from afar a family of three become a family of one. And that is what is driving me to write…

I live in a complex of 12 townhomes. They are right next door to the train tracks, but separated from them by a big fence and off the road far enough that you just can't see the ins and outs of what goes on here. We are dubbed "affordable housing" which means they charge lower rents so poor people can afford to live in homes (either with section 8 or without) that have enough bedrooms for their children.

I'm in my third year living here. I moved here from my old crummy apartment, and the townhome is beautiful and three bedrooms and two stories and just, wow. I have been blessed. A lot of folks that live around here think it is a shit hole, but I say it is all about perspective.

Anyhow, a girl across the way from me has some mental health concerns. She hasn't been able to work in quite some time, but has been making it. She has guys come and go, some losers, some quite nice. How do I know this? Well, in these townhomes we all face each other, and we get to know the finer details of one another's lives, whether we talk to each other or not. It's just like that. Like Melrose place, but poorer.

A couple of weeks ago this girl's daughter, who is just under or just over a year, drowned in her bath tub. It was fortunate for her that the baby was able to be revived. It was unfortunate for her, that because this woman already has child services involvement, that this incident caused her to lose both her children, and she is currently in a CHIPS trial.

Ick. I've been watching this woman come outside to smoke, and be a shell unto herself. I watch her take out the garbage. I saw her come home without her kids (age 3 and 1.) I watched, and I cried. I watched and I cried and I hurt so badly inside, because it doesn't take much to remember when it was my turn and I screwed up and I lost everything.

I talked to her the other day and I let her know a little bit about my own story, and about how at least over here, no one is judging her and no one is thinking she is bad. I've heard her story about what happened to her daughter, and I don't doubt her truth. I've also been in her shoes. Slightly different circumstances and slightly different time, but I've been there.

Because I am poor (not wealthy) in funds, and because we can afford without help but with some help the things that we need, I live here. I live here and every day I am reminded of yesterday.

I also live across the courtyard from a woman I went to treatment with. And her boyfriend. I was in treatment with him too. (They met in treatment.) She was/is my closest friend here, and I've watched her spiral back into crack for the past year. And tear out our friendship and my trust bit by bit. It happens, and I don't hate her, but I can't trust her. But it reminds me why I'm here, what brought me here, the joys I have that others don't (even though we aren't wealthy or well-to-do we are so loved!)

I've been thinking a lot lately about how I got here and where I've been and I guess the people around me are reminding me. I’ve found that I can find so much more than shame in my past choices. I’ve learned that shame is such a transitory emotion. I’ve learned these things and I realize that it has taken me many years to realize them. And it hurts to watch this young girl across the way and know that I can tell her these things, but it won’t be real until she learns them herself.

And that is a long long road.

A 7.0 Victory! ...among other things

2008-12-24T12:24:00.001-08:00

I received in the mail today a letter, a letter from my humble new family practitioner, who with the help of a dietician and a diabetes educator, has agreed to monitor my diabetes through the duration of my pregnancy.

I left my endocrinologist of five years a few weeks past for this doctor, and I am very glad that I did.

Leaving old friends/foes aside, back to the letter. The letter indicated that my a1c is 7.0!

Yay!

A few of you may be scratching your head, wondering why oh why a pregnant woman with type 1 diabetes should be happy with a 7.0 a1c.

Here is why:

The first month of my pregnancy my a1c shot up from a 7.2 to an 8.6. Since that first month and terrible high, I have been desperately working to lower that a1c. And the lowest I have been able to manage this entire pregnancy is a 7.5. Until now.

I am plagued by gastroparesis, which, in case you didn't know, worsens in pregnancy. The gastroparesis has made easy peasy blood sugars a thing of the past. It was okay when I ate very little (thus the drop from a size 12 to a size 6 before I got pregnant) and was okay with a 7.2 a1c. That changes however when faced with constant nausea and an overwhelming desire to stuff my face. My gastroparesis, combined with my hypoglycemic unawareness, and quite frankly my fear of lows, has greatly limited my success with blood sugars. This 7.0 is a charm. A charm!

I honestly did not believe I would or could reach this a1c during this pregnancy.

My general practitioner who manages my diabetes is going to work with me to help treat my gastroparesis after I deliver. However, I expect things to even out after my pregnancy. As stated before, my gastroparesis is not nearly the issue it is right now when I am able to eat small amounts infrequently, which, if you have gastroparesis and are not pregnant, you know is easy to do. I fill up fast, and if I eat past being full I pay the price in discomfort. It is like symlin, just different :)

On other news,

I am 22 weeks 2 days pregnant! Yay!

There was a quick question about how Bob the Babe and I arrived at Thia Apple's name. I am happy to say that yes, there is a story behind her name!

Thia is a name I have derived from the Greek Name Ilythia, which means Goddess of Labor. Thia, alone, means Divine One or Goddess. But we named her after the Goddess of Labor? And why? Because this pregnancy, from even before I was or knew I was pregnant, has been a labor. A labor in love, perhaps, but a lot of hard work! I wanted our baby girl's name to reflect this love in labor. Bob, however, hated the name Ilythia. Thus the Thia.

As for Apple? Well when Bob the Babe and I agreed on the name Thia, I asked him what her middle name should be. I believe it was the end of a weekday and we were casually lounging in our bed, not ready for bed, just lounging for a few minutes before we were off to whatever we were to do next. And Bob? Bob said Apple. I think he meant it as a joke, but ya know, Apple was just a really cool fit so we stuck with it!

So there you go, the reasons behind the name: Thia Apple Waline

Now, we have also been doing hockey this year. Gracie is in hockey this year, along with Sandis.

Gracie is a junior mite, and you wouldn't believe how her strong legs are taking her about the ice. I love to see her working the thick muscles in her legs. You should remember last year (September 2007?) Gracie was diagnosed with hypotonic cerebral palsy. The diagnosis was met without much ado (we cared, but not really because it changed nothing) but, to know the gross motor delays my daughter has struggled with since birth while I watch her on the ice learning to play hockey, well....She really loves it out there too. She is such a jovial, creative, funky child! She plays more often with boys than girls, and in her own way, despite loving horses and kitties and puppies and the color pink, she is a down and out true to life tom girl. She also really works hard out there! She only used the bar (walker) to help her skate the first four practises. After that, and after some strong encouragement from mom & dad, she abandoned the bar and ever so slowly developed her skating stride. It was so cool to watch! She didn't even participate with the other kids those first few weeks; she just rythmically moved up and down the ice, slow as a snail yet determined as any woman that comes from my lineage is destined to be!

Now on to Sandis. Sandis is in his second year of hockey this year, and he is in the mites. Sandis is a different skater and player this year. He is still an aggressive boy who abandons all protocol on the ice, but he is much more refined this year! We are finishing up a short stint over these past few weeks as a goaltender. Sandis played goal once last year, in full gear, and anounced shortly afterwards that he hated goal and would never play again. I can imagine that for a boy with his perfectionist tendencies, that playing a position that you are bound to have multiple mini failures in just as a par for course is difficult! Well, this year when the coaches asked who was interested in playing goal and practising in goalie gear, my lovely boy raised his voice, and probably his hand.

I wasn't so sure. He'd hated it so much last year! But he was insistent. So we grabbed that extra 20 to 25 pound bag of gear (in addition to his other hockey bag full of gear that we still needed) and we ventured into goaltending adventures.

Sandis has practised in goalie gear three times now, and played one game. He is playing his last game as a goaltender this coming Saturday. In addition to practising on the ice, Sandis has also been coming home and practising blocking "pucks" (harmless plastic balls that damn well better not fly!) in my kitchen. I watched Sandis play his first game as goalie over this past weekend. I honestly think they have traded my boy in for another child. This boy could not be him! I noticed things were off (unusual) in the locker room, where amidst all that young boy chaos as they dressed for their hockey game, my son was unusally calm, focussed, and alert. He cooperated quietly and easily as I worked with his coach to get not only the usual hockey gear (minus shin pads, chest pads, & elbow pads) on but also while we strapped on huge bulky goalie pad to his legs and fastened the monster goalie chest and arm protectors on his thin frame. He cooperated. He helped. He was in tune. He asked questions that were pertinent to what was going on. He was completely with us, in tune with us, communicating with us, and he did all of this while in a chaotic room of noisy boys. Where is my child? Or is this my child and I am just meeting him for the first time?

Sandis purposefully took to the ice with his coach where I watched him carefully listen to instruction. And then I watched my boy, my beautiful boy, pay attention to ONE puck with a focus unabled to be paralleled by even most children his age for forty-five minutes.

My son focussed on one thing, with one intent in mind, with absolutely no outside redirection, for almost an hour.

I realized that day, during that game, that somehow this game of hockey, this game that I have loved for so long and have passed on to my children, somehow this game took my boy and gave me back my son.

Don't get me wrong. I mean, I've always had my son. But for two years now we have had a diagnosis and services and evaluations that have focussed not on the child but on the disability. And I have worked so freaking hard to ensure that my boy has the supports he needs so that things like this are possible for him. But really. That day, Sandis wasn't a child with a helper. He wasn't a child with a disability. My son was a goaltender, playing goal, and doing all he could to not let that puck in. He was just a little boy, and he was my little boy.

And as I've pondered this realization about hockey, how it took this boy from a diagnosis and services rendered and made him back into a little boy, I also realize what it is doing to my little girl. My little girl isn't a girl with diabetes or a girl with braces on her legs out there. She is a little girl playing hockey, and damnit if she doesn't look like any other kid. But she isn't. She's mine.

So what does all this rambling come up to?

Hockey took my children, and turned them back into children. Just kids, having fun, playing hockey, like all the other kids. And I have what I had before I learned they were different, and before I knew what a disability is and what it could mean to me. I have those same kids, minus the limitations that a disability label can put on a child. Minus the limitations. Because what county case manager, while administering Sandis's waiver funds, would stress the importance of a normal activity like hockey? They wouldn't. Only parents do that. Case managers stress therapy, not realizing that the best therapy is not in a doctor's office but rather in the day to day activities that every other family and child is participating in. Those same day to day activities that you lose more and more of the more you add therapies and doctor's appointments. Somethings gotta give. I'm glad we chose hockey.

Thia Apple

2008-12-19T09:24:00.001-08:00

Our perfect little beautiful Thia Apple is planning to make her appearance sometime in April. I can’t believe her arrival is so imminent.

Yet in our hearts and in our family, little Thia Apple is already here. She is the newest addition to our family, and we smile and giggle all in wonder of her.

We are anxiously setting up her space in anticipation. Little Thia already has a home and many many hearts that are stolen by her.

I have been reading.

2008-12-10T05:49:00.000-08:00

It is no wonder, really. I have an ultrasound Tomorrow. You know, the big one. The high clarity, performed by a physician so if there is something wrong he is already in the room to tell you the bad news ultrasound. I guess you can say that they don’t waste any time or resources at the neonate clinic.

I have been reading about families who received adverse diagnoses for their baby while they were still pregnant. They received diagnoses that left a door open for them to abort their child. They received diagnoses that, in the medical professions’ view, lessened that baby’s right to life and lessened the mother’s ability to protect that life and the dignity owed to it.

Many, many of these babies died. Almost all of these babies lived, after birth, for a certain amount of time. Some of these babies were surprises, and did not have the condition their parents were told the baby had.

All of these parents were offered abortions and all of them chose to give their baby life, no matter the length of that life.

I realize this is heavy, tearful reading for an expectant mother who in a matter of hours (albeit at this point around 26 hours) will be having her own diagnostic ultrasound. However, this reading has not left my stomach in a knot. I am not afraid of what we will find tomorrow. I am not anxious for a “loss.”

I have two children, both beautiful, both healthy, who both at some point received a diagnosis which caused me to grieve. I did not want these diagnoses, and I never imagined my life with them.

However, their diagnoses in no way diminishes their role in my life and their place in my heart.

I tell my children that we are having a baby, but they will both always be my babies. No matter their age, no matter their temperament, they will always be my babies, attached to me by a virtual cord that is not even severable by death.
It would be foolish to think, even for a moment, that their position as my babies could ever be diminished or changed by a diagnosis.

It is no different for this child, the child I carry inside of me.

I have routinely refused all genetic testing and profiling thus far in this pregnancy. In fact, while maintaining contact and communication with my endocrinologist, I have really tried to just stay out of the doctor’s office this pregnancy as much as possible. I am enjoying my baby and the time that only the two of us share. I am trusting in the natural progression of pregnancy, and I am not afraid.

So why this ultrasound? Why this ultrasound if I don’t want to know?

We want to know the baby’s sex. We want to know if we are pink or blue and we want to foolishly buy into flagrant baby color schemes! Ultimately, I also plan to spend the majority of my labor at home, alone, with my husband. I will not do this, however, if this ultrasound shows that there are concerns with the baby.

I wait, excited to know which side of the gender fence this baby will land on.

And yet, I don’t wait. Because although I want to know the results of the he/she equation, there isn’t much else I really want to know.

(Edit: If you would like to read the stories I have been reading (I have now read them all!) go here: http://www.benotafraid.net/)

177

2008-11-25T07:18:00.000-08:00

2 years later I still feel the vicious bite of that number, its recurrence bitingly ironic.

Rarely does the grief associated with my daughter’s diabetes diagnosis reveal itself. Time has dulled the experience.

A change in my peanut’s treatment needs temporarily flares this cyclical grief and I submit to raw feelings with little hope of staunching the spread.

I am not broken

2008-11-19T05:22:00.000-08:00

I am not broken
I am whole.

I feel I love I sing I cry.
I am not broken.

I am not in pieces
I am not put together
I am just as I should be.

I am not broken
I am
whole in Gods’ eyes
whole in my husband’s eyes.

I am mother student person whole.
I am not broken
I am whole.

Do you know how it feels to be broken?

Do you know the feeling when others perceive that you are broken; that they feel you cannot accomplish what your body was simply created and put to task to do without their guidance because you are less than whole, less than perfect, lacking, diseased, or broken?

Do you know how it feels to have the label broken?

I am not broken, and perhaps, I am using the form of verse to state this fact, to share its truth, and to broadcast my realization that their truth is not mine. I am not broken.

I am whole.

(edit: The pregnancy is going beautifully. I am 17 weeks and 2 days along. My kidneys are functioning beautifully. My a1c is 7.5. My gastroparesis is HELL. My poor hubby thinks I have the worst breath on earth, but I am doing the best I can. My baby is beautiful and whole and content and deeply comfortable within my warm and fluid depths!

This pregnancy is a journey not just as I embark on the creation of my final child, but also a realization that I am not a statistic, I am not a number, and there are choices that I can make in regards to my body and my care that perhaps others may not understand.

I am not my diabetes, my vascular system, my back disease, my kidneys, nor even my a1c. I am a person that has a person within me.

I am blessed with one of the most arduous yet awesome tasks that God has perhaps ever seen fit to task any woman with. That is to aid in bringing a child into the world. I am working hard, and trusting God; trusting that God does not make broken people.

This entry is intensely personal and painful for me.
I will perhaps never describe to anyone (other than my husband) exactly what this entry is for and to me, but I think you can understand the general gist.)

The New Piece of the Pie

2008-10-16T06:33:00.001-07:00

I’ve kind of been going back and forth as to whether or not I should share my latest news, or not, but I guess here goes. I am 12w3d pregnant, and so far so good. Outside of some severe morning sickness (which has now gone on its merry way) I’ve been okay!

For those that don’t know (most do), my pregnancy is high risk. I have type 1 diabetes (for 17 years), gastroparesis (delayed gastric emptying, problems with my vagus nerve in my stomach), hypoglycemic unawareness (I don’t feel my low blood sugars), degenerative disc disease, and spondylosis (arthritis in my spinal canal and subsequent narrowing).

I have two children, ages 8 and 5. I am also newly married, on July 2 of this year. I am 30 years old.

Bob and I decided to try and have children right away, immediately after we got married. He doesn’t have any biological children, although he calls my two his own. Our reasoning to try right away is because I am 30 and have had diabetes for 17 years. It is known (and I was cautioned) by my doctors that if I started to have kidney problems or eye problems, those conditions typically accelerate during pregnancy which would mean that my personal health risk (and the baby’s risk) would be much higher if I had those diabetes complications. I consulted with all my doctors, had my meds changed around, worked on my blood sugars, and got the okay to be pregnant. I had my kidneys and eyes checked and both were great. Since I have been diabetic for so long, I felt like it was only a matter of time before I had kidney or eye complications so I figured the sooner I have this child, the better.

So my husband and I got pregnant, IMMEDIATELY (like the very first week we tried!)

I have bi-weekly appointments with my endocrinologist and at my most recent appointment with my endocrinologist she told me that although before the pregnancy I did not have noticeable issues with my kidneys she now believes I have stage 2 diabetic nephropathy (There are 5 stages, the final being End Stage Renal Disease). As stated before, this condition typically accelerates during pregnancy, so I can expect my kidney situation to worsen throughout the pregnancy. However, after I give birth, my kidneys should return to the health they are at currently, which is easily treatable with medication that cannot be taken during pregnancy because it causes birth defects.

Almost all women with nephropathy develop pre-eclampsia and 90% deliver before 34 weeks gestation. 70% or more of women with diabetic nephropathy deliver via c-section.

I am sad, sad, sad. I just feel like we did all we could to ensure this pregnancy was as healthy as possible. We changed my meds around. I see the doctor constantly. I’m under constant stress health-wise, and although I knew this would be hard, it felt like I could do it. This throws an entire new wrench into the whole pregnancy. Not to mention aside from that I am dealing with the diagnosis of a new life-long eventually life threatening condition. (I know, over-dramatization! My mom has taken meds for her kidneys for over 10 years with no progression, but still!)

The day after I received my diagnosis I went and bought diamond earrings. True to form, I’ve been wearing my diamond earrings and a beautiful diamond heart necklace my mother in law gave me because it just seems the jewels lift my heart and mind. It sounds silly, but the sadness I feel is intense. I am 30. I feel young, not kidney disease material! That may not be rational, but I don’t feel very rational. I feel cheated of health.

I know my chances of returning to almost normal kidney function after I deliver is very high, and I am thankful that as of right now my blood pressure is normal. Knowing these things, however, does not stop up my sadness. I can’t turn back now. However cliché this is, I feel as though I am on a train that has no stops, a direct shot straight to wherever I am going, and wherever that takes me (us) I sincerely hope that the end result is a baby with health enough to survive.

Fun With Babies

2008-08-30T14:49:00.000-07:00

Anyone care to guess what would warrant giving both of the kids a baby doll?

Reactions? Gracie is Psyched! Sandis, well it took him a few minutes but he came around!

How did we share the news? I wrote a note that read: "Mommy is going to have a baby." We sat the kids down on the couch and I gave Sandis the note to read out loud. It took him a minute for it to sink in. After it did? We handed out the baby dolls, which will be good practise for when the real one comes in April or May!

Medication and Other Such Things

2008-08-22T12:24:00.000-07:00

We are a medicated group.

Sandis recently started stimulant medication, only one short week ago.
I am on many medications including Lexapro, prenatal vitamins, Novolog, and Percocet as well as over the counter remedies like Metamucil, Colace, an occasional Woman’s Correctol, and Calcium Supplements.

Bob has his medication of choice, and Gracie? She gets the all-powerful Lantus.
These eleven lovely medicines help to maintain the health and well-being of my family.

I wonder what families like mine would do without access to the medicines we take?

For one, Gracie and I would be dead. So with that in mind, our family would be a two-person family consisting of Sandis and Bob. That effectively cuts the medications down to two: Sandis with his stimulant and Bob with his med-of-choice (respecting privacy here!)

Where would they be without their meds? Bob would be where he was before he started his new medication, and well, he wouldn’t have a wife to be none the happier about it (I’d be dead), so who is to say. And Sandis? Sandis would be struggling, just like he was before medication (and just like he does still, just differently with medication) and he wouldn’t have a mum to help him out. Fortunately he would have Bob.

What am I getting at? I’m not exactly certain. Perhaps I am feeling tied to medications lately. Sandis and I both take Class 2 Medications which means that if we want our prescription filled we need a paper prescription. This involves an extra trip to the doctor to pick said prescription up. This extra element certainly adds an errand or two to the routine, and it certainly can add to the feeling of being chained to the medications you take.

My switch to Percocet is relatively recent. I had been taking Ultram and Elavil for pain. The duo worked and managed my pain well without the addition of a narcotic. However, those medications aren’t recommended for use during pregnancy. Percocet is actually in the same class as Ultram, but after consulting with several doctors and finally my pharmacist, the general consensus is that I should settle on the medication that I can take the least of AND the medication for which there has been the most opportunity to see how babies are affected when it is taken during pregnancy. I initially switched from Ultram to Vicodin, but Vicodin was terribly ineffective in regards to treating my pain. It did work well at contributing to nausea and mood swings though! Thus the switch to Percocet ensued as safety questions and dosing preponderances were resolved. The pain relief is fabulous, and at only 1 pill per dose I really am not all that dopey. I do however struggle some with concentration.

It was an interesting experience deciding which medication to take while pregnant. My primary physician is definitely inclined to seek outside opinions, which I think is fabulous. I don’t necessarily want my doctor to be the most confident dude with a board certification but rather the D.O. that is going to take the time and utilize the resources he has (including professional colleagues!) to ensure that he is helping to coordinate the best care possible for me (his patient!) When all was said and done, my primary physician consulted with my endocrinologist, an obstetrician, a perinatologist, my interventionist pain physician, and my pharmacist about appropriate pain medication during pregnancy. Should you be disinclined to count, that is five consultations! My doctor called me at home, work, or on my cell phone after each consultation to discuss the other doctor’s opinion and reasoning behind it. The entire experience was grounding and helped me feel confident in our decision to try and make baby #3 (Bob’s baby #1) while managing my other conditions. I cannot sing the praises of my excellent primary physician enough!

I do have other conditions beyond my degenerative disc disease, however, that need to be managed during a pregnancy, most notably my type 1 diabetes. Any woman with type 1 diabetes who has been pregnant understands the sprint-like marathonian qualities of this particular (or rather peculiar?) set of circumstances. I have been instructed to test my blood sugar when I wake up, before I eat, 1 hour post-prandial (after I eat), and finally before bed. I will fax in my blood sugars every Monday and Thursday. This is actually considerably easier to do with my RealTime system (continuous glucometer.) I am shooting for the 100-120 range and under 180 1 hour post-prandial. It really isn’t safe for me to be under 100 because I can drop so quickly and don’t feel my lows. Since I have started trying to be in that tighter range I have been fairly successful, generally being 100-135 although the 1h pp is a difficult sugar to have under 180. I receive specific ranges when I see my endocrinologist on September 9th and at that point I will share them! The nurse didn’t share the typical ranges because they won’t apply to me.

My final condition that could affect pregnancy is gastro paresis. This condition has really done a butt-whooping on me this past year and I have finally taken some specific actions to address it. There are quite a few dietary changes I’ve made that significantly helped me to feel better while reining in unintended weight loss. I have unintentionally lost 35 lbs since last September. I initially thought it was a side effect of my back pain. Unintended weight loss is a very common side effect of gastro paresis. I was diagnosed last September (right around the time of my back surgery) but have not pursued further treatment until recently, putting it off for other more pressing matters. The fact that I could not stop losing weight was an eye-opener while working with my doctors. My lowest weight was 130. I am 5-6-1/2” so I was never underweight but it is good to get a handle on things while finding other ways to get the nutrients that my body isn’t getting from food. During a pregnancy I would need to eat six meals a day and continue to take my vitamins and calcium supplements. I also have Ensure on hand should I be having a particularly rough time with eating which will help replace calories I might not be able to consume otherwise.

Sandis, as mentioned earlier, began his stimulant medication this past Friday. He actually began taking Concerta, which is a long-acting Ritalin. The day that Sandis took this medication for the first time happened to be a day that Sandis was home for the day. I had taken the day off to prepare for a family trip to the family farm. The drive is about three hours, and we were planning on staying there Friday, Saturday, Sunday night and then leave first thing Monday morning. I had quite a bit of packing to do for a family four (and two diabetics, ack!) I wasn’t around Sandis all that much because of this, but he was at home with his PCA doing his own thing including chores. We had celebrated Sandis’s eighth birthday the day before (a few days early) and Sandis had gotten a desk (with 6 drawers!), a desk chair, and a skateboard. The addition of the desk to his bedroom had created a chaos in his room that is paralleled perhaps only by the Christmas morning after-present siege. Sandis’s chore that day was to clean his room and in turn organize the contents of his room. This is typically something that requires much redirection and involves many tears and tantrums. It tends to culminate in a room half organized with Bob or I completing the task while perfecting what Sandis did manage to complete. It is a painful ordeal for all involved. Imagine my surprise when I came home from running errands to find that Sandis had methodically cleaned and organized his room. He proudly showed off each drawer outlining its purpose. He had a car drawer. He had a music drawer. He had a pencil and pens and notebooks drawer. He had a video games drawer (of course!) Sandis had organized not only the six drawers in his desk but also nine additional drawers in smaller toy dressers, his book case, and the top of his dresser. I had no idea this boy had it in him.

His PCA told me that she kept expecting him to be “done” but that she just “went with it” while he was still willing to work on his room. I have heard comments that Sandis is more “socially aware” and more chatty on his medication. Sandis himself told me that he thinks the medication will be helpful for school because he won’t get as frustrated. I see a HUGE reduction in Sandis’s impulsivity. This may end up redefining how we approach services for Sandis.

Oftentimes children with autism spectrum disorders don’t respond typically to medications, especially stimulant medications. We took a bit of a gamble with this medication, but I am really glad we did.

We do still have a few issues to iron out though. Side effects such as reduced appetite and reduction in ability to sleep are things that we are dealing with. We have been trying to ensure that Sandis has a snack every two hours. He isn’t hungry that often as a rule with this medication but if he doesn’t eat he will get a stomach ache. Sandis does NOT like the stomach aches so we are trying to prevent them. He also hasn’t been sleeping well every night. I think we need to make sure he is taking the medication before 8 am. He isn’t getting to sleep until around 9:30 or 10pm. He isn’t overly crabby though, so while the sleep thing is a concern if he is feeling okay that is a good barometer for how acutely it is affecting him. This medication is very long acting, and we may need to switch to a medication that needs to be taken more often so we can get more dosing accuracy in the afternoon and affect initial sleeping less. We are rather new in this process, though, so I don’t have the answer to that yet. We did just increase from 27mg to 36 mg as the medication visibly loses effectiveness after about 8 hours.

Medication updates aside, do you ever feel tied to your medication?

The Vast Considerations (not Vas Deferans)

2008-08-12T11:31:00.000-07:00

I mentioned last post the state of my baby fever. I also mentioned complications both current and perhaps expected.

Do you have any idea what sort of tiff doctors get into when you have several conditions, some requiring medication, and you tell them you want to have a baby? I had forgotten, but then again, I have never planned a child. Sandis and Gracie were both so blissfully unexpected.

I have spoken to my endocrinologist, who surprisingly, had positive thumbs up for me. I will have slightly less stringent after meal blood sugar guidelines because of my hypoglycemic unawareness, but I’m where I need to be with my diabetes (as much as possible) in order to have a healthy baby.

I have spoken to my primary doctor, who acts as my pain management/medication doctor. I went from a trio of meds, none narcotic, to a duo of meds, one narcotic. This is apparently what they do when you want to get or are pregnant. They change everything.

My primary doctor has spoken to an obstetrician and a peri-natalogist. The peri approved our med set, and recommended I pursue further care with my interventionist pain physician to lower my oral medication set as much as possible. That is scheduled for the 19th.

All this and I’m not even pregnant!

Then of course, there is all that there is outside of this entire baby making madness.

I registered the kids for hockey yesterday. Hockey is expensive. Really freakin’ expensive. However, despite the gregarious chunk of change we have plunked on hockey in the past weekend, upon closer examination I realize something. Hockey is the only activity my kids participate in. This will be Gracie’s first year. Hockey fees and gear, in total, amount to less than 2% of our annual income. While the appropriateness of the fees may be called into question, in light of the trouble we have paying our medical bills; a more appropriate question comes to light. Why is less than 2% of annual income for sports/activities for children perhaps deemed inappropriate yet almost 30% of annual income for health care expenses is deemed completely appropriate?
Pfft. I don’t need to get started on the ridiculous state of health care in the United States. Read my archives, however, if you want to learn more of my views. I’m sure I’ll have stuff to follow in regards to it, as well.

You Give Me Fever

2008-08-11T11:45:00.001-07:00

Ahhhh. Baby baby baby baby.

Baby Fever. I have a bit of baby fever.

Baby Fever is not without its own complications. Seeing as how I am a type 1 diabetic with more than one complication accompanied by a completely different chronic condition, I am no stranger to complications (t-1 diabetes 17 years, gastroparesis, hypoglycemic unawareness, degenerative disc disease accompanied by neuropathic pain.) Complications that complicate that whole innocent baby making process (well perhaps not the making process itself….)

That being said….ahhhhh little baby baby baby baby baby. How does one decide that a baby baby baby should not be a baby baby baby inside of me? I want to believe that any baby of mine would be content simmering amidst my other internal organs, happy to some extent with the environment I have prepared for it, lacking though it may be in perfection. Thirty something baby-making with a complication or two may not be complication free for baby too.

But in the end, I do believe, that despite med changes and body rages, that whatever baby baby baby God may grant to me and Bob the Babe-y may wallow quite contentedly in the womb that happens to be mine.

Ah well, god’s will is more prescient than my own and we will see what baby baby baby may come to pass.

Married!

2008-07-25T07:43:00.000-07:00

Yes, we tied the knot! What else is there to say except that I have finally been given that partner I always wanted to have 

I Feel As Though an Explanation is Owed

2008-06-16T05:23:00.000-07:00

Yes, things have been hectic. Yes, things have been crazy. These are not the reasons that I have been choosing not to blog.

Yes, choosing.

I have found that while I am no household name, in my community my name is more well-known as I participate in more activities that put my name front and center. This hinders my freedom for open speech.

I have found in my advocacy work that I am involved with organizations planning various events and programs. I may ponder these activities often, but I am not free to share what is not yet to be. When I am representing not only myself but potentially also other organizations, it is not prudent to share many things. While I need not conduct myself in secret, it is typically not ethical to discuss ideas that are merely in planning stages and may never come to be.

I have found that I cannot write about what is, and what may be. I have found that my speech is not free, not by any extension of law but rather by a mixture of events and circumstances that make sharing much harder.

This blog has served as an excellent place to feel out my children’s diagnoses. It will not be an appropriate place to feel out my advocacy ambitions. While I imagine with the help of other parents I will accomplish much, my venue now must be more professional and more closely honor other’s confidentiality needs.

I doubt I will be back, but then again, I may…

Retail Bliss……Or Something

2008-04-16T13:07:00.001-07:00

It has been some sort of interesting shopping infested divine interlude for me these past few weeks. I understand that perhaps that doesn’t make much sense. With that, I will branch off into some sort of explanation.

I have lost upwards of 25 pounds since my surgery in September. Losing 25 pounds typically means you have to start replacing clothes as that will bring you down 2 to 3 sizes. I have gone from a 12 to either an 8 or 10(misses), or 11 (in juniors) in pants or shorts. In blouses I’ve gone from a Large to a Medium (in Misses), and from an X-large to a Large in juniors. I have gone down a size in underwear. I have also gone down a size in bras, and I even went down half a shoe size. The only thing that fit was my socks.

Imagine the frenzy (and sadness, and anxiety) involved in replacing an entire wardrobe. Not a few pairs of pants, but also jeans, blouses, underwear, bras, and finally shoes. The clothes I owned were so large on me they looked sloppy, and although I did have some shoes that I could manage in I’ve had to do away with heels for the most part because of my back. This further exacerbated the shoe issue. It is fun to lose weight, yes. There is, however, a certain stress involved when you have limited funds to replace your wardrobe.

I have guiltily, however, been enjoying shopping! I really can’t think of a better reason to blow money on clothes than losing 25 lbs. In fact, I feel a bit entitled to the frenzy. I’ve managed a few pairs of pants, a couple pairs of jeans, a LOT of socks ( I know my old ones still fit, but you don’t understand, this is a retail FRENZY we are talking about!), some panties, a couple of pairs of shoes (brown & black), a bra (just one), many skinny belts, and several fitted curvy blouses.

This past weekend, I was indulging in shorts shopping. The shorts I wore last year were big at a size 14, but not yet sloppy as I was still wearing a 12. This year those shorts won’t even stay on my hips. So I began to look for shorts that will make my somewhat transparent legs look delectable. But everything I tried on in the Misses department was too big! I realized I would need to go down a size…to an 8.

I felt like crying. I was thinking about all those great pants I bought, all a size 10...All those clothes. Will they still fit? ...All that money and all those beautiful wonderful sexy pants. God I hope they still fit. I don’t want to lose more weight.

I ended up deciding that I would shop for shorts in the juniors department, where size 11’s are still comfortably fitting perfect.

The thing is; they don’t sell Dockers in the junior’s department.

….Sigh….

What Kind of Health Care Reform Does Bob Olson Support?

2008-04-11T11:02:00.000-07:00

Bob Olson would like to see our country with single payer health care, and he has some great ideas to get our country moving in that direction.

P.S. I found this great excerpt on the Blog of the Political Muse.

On Being Rich

2008-04-08T06:02:00.000-07:00

The other morning, on the way to work and school, I was having a conversation about politics with my randy little guy Sandis. We were talking about the differing priorities when one is well to do and when one is not so well to do. We talked about the inclination to preserve the funds that one has coming in, and preserve the freedom to do what one chooses with that income. We also talked about something called “social justice” and the health care quandary our nation seems to be in.

This may seem like rather heavy material for a 7 year old, but I find that Sandis’s ability to comprehend the heart of the matter in regards to politics is quite uncanny. So after some conversation, and then some conversation about the differences in theory between the GOP, DFL, and even the GREEN, Sandis had something to say to me.

“All these people have it wrong, though, Mom. Being rich doesn’t mean you are loaded with money. It means you are loaded with love and family all around you.”

So simple.

It is easy to say when you are 7, and all your needs are provided for. He has clothes when he needs clothes, shoes when he needs shoes, a couple of helpers to help him accomplish things he would have trouble accomplishing without, a behavioral therapy programmer, an entire team at school dedicated to helping him succeed, food & medicine without need of conscience in regards to their cost...

This too will pass. This boy will grow up. And while Sandis will always be loaded with the love of those around him, he will learn how it is hard to prosper, flourish, grow, and appreciate ones circumstances when basic needs are ignored and not met.

Being rich is not about money. Sandis is right on about that. Being rich means that society (you & me) cares enough about you (or your children, or your parents) that your very basic human needs are met. Basic human needs that include food, clothes, shelter, medical care, compassion, empathy, and love (and I’m sure a few others.) Some of this we can get from our family members. Other things we must rely, at times, on society to provide should one be unable to provide independently for oneself.

The sum of a nation, of any society, is merely the heights its most vulnerable citizens will reach.

What a unique concept that is: to judge our society not by the richest or most powerful, but on the poorest and least powerful.

Just A Little Something.......On Health Care Reform in MN

2008-04-07T09:41:00.001-07:00

HF 3391 & 3390 are health reform bills in the MN House getting a lot of attention from lawmakers lately.

HF 3391 & 3390 concentrate on a few erroneous assumptions. The first erroneous assumption is that preventative care saves money. Would that it were so easy! Studies have actually shown that while preventative care in some instances may save money in the long run, most preventative care actually costs more. (Expert characterization on Feb. 13, 2008, edition of the New England Journal of Medicine: "Although some preventive measures do save money, the vast majority reviewed in the health economics literature do not.")

The second is doctor & patient overutilization. In order to address this, the new legislation proposes an extremely confusing third layer of “managed care.” This would force patients to once again have PCP’s (didn’t we prove managed care didn’t work in the 80’s?) These bills would also require physicians’ to absorb the risk that insurance companies typically do, by paying physicians not fee-for-service but with an annual fee per patient loosely determined by a risk algorithm not yet known.

What does this mean? Hypothetically, your physician would receive $2000 to provide you primary care services for the year. Should your care cost more than this, your physician loses money. Should your care cost less than this, your physician will earn money. This seems to me like an excellent incentive for physicians to avoid chronically ill and underserved populations.

Health care reform is important, but it is also important that we approach health care reform in a way that is not based on popular “myth” but on fact. Senator John Doll’s comparative cost analysis bill, which studies the major reform bills in the Legislature, would help us do just that.

April is Autism Awareness Month

2008-04-04T11:54:00.001-07:00

April is Autism Awareness Month, and it is a wonder that this year, 18 months after Sandis’s intial diagnosis whereupon I was so afraid…..It is a wonder that this year I am not afraid.

Why am I not afraid? Amidst all these murmurs, perhaps from one parent to the next, about the horrors of autism, why am I not afraid?

Sandis with his joyful heart , precipitous smile, and eager gait is a child with autism. It is hard to be afraid of autism when my boy is such joy.

It isn’t that things are never hard. It isn’t that I never wish things were different. It isn’t that I am not tired, and some days more than others.

Autism, in my child, in my beautiful boy, is the most beautiful parts of him in the most curious presentations. Even his outrages, pure in their simplicity, lend themselves to something that perhaps means more than just anger, but an anger with humanity as it is. An outrage at the box society has trapped him in.

It would sound pretentious to say I am grateful for autism. It would sound perhaps cliché to say that Sandis would cease to be Sandis if his autism were “cured.”

It would sound pretentious and perhaps cliché, but I can’t imagine my beautiful boy in any other way.

The Business of Being Busy

2008-04-03T05:24:00.001-07:00

I haven’t been blogging much. Which seems fairly odd for me as I have been religiously posting entries on this web site of mine since inception, August 26, 2006. It just doesn’t seem right.

So here is the deal. Some things I can’t blog about. Sometimes things are sensitive enough of a nature, and seeing as how this blog is not intended in any way to be anonymous (try googling Sarah Rittmann) sometimes the sensitive stuff (not in feelings but sensitive as can be offensive to some I know) just wouldn’t be beneficial to post here.

The other part of the deal? I have been excruciatingly busy. In a good way though.

Bob the Babe moved in not long ago. I must say that the time needed to invest in a partner is significant. Add to that the fact that both he and I are learning the whys, how-tos, and all those other things that go into being in a relationship where marriage will soon be our common tie AND sharing a common residence and budget. We have a lot of work to do and we are learning to do it lovingly.

I have been more and more involved with our local DFL. I do have my issues with party politics, as I don’t believe that my personal visions in regards to politics are partisan. But, apparently (and unfortunately), many of them are (and can be spun to seem to be.) I am a neighborhood leader in the DFL (precinct Associate Chair) and I have a large number of people in my precinct that need the benefit of one-on-one conversation about current issues. I live in a working-class neighborhood. The people that own homes in my precinct aren’t typically white collar folk. They are labor union folk who have worked hard for the small homes they have. This population needs a voice and needs to feel acknowledged. I really want to work to help them find it. My precinct also houses a large population of poor and disabled individuals. I can’t wait to share with this population, as I can’t imagine anyone who fits better into that shoe than I.

I volunteered (just last night) to have a house party for one of our local candidates for MN House. Joanne Dorsher needs Democrat support and I’d love to help get her name out there. I was hesitant, if only for a moment, as I live in a townhome complex that is created for people whose income is under 60% of the median income of the area. I wondered, in my mind, how it would be accepted to have a house party for a candidate in a home that is perfect for me (and beautiful in my mind) but can be seen as kind of a local ghetto (alley of the poor.) Soon after I had this thought, I wondered how often candidates have come to my corner of the neighborhood. I wondered if any door-knockers had ever braved our doors. I imagined this candidate coming into my neighborhood, visiting with my neighbors, and I imagined a certain amount of local apathy dissipating. When you are poor, it doesn’t seem that candidates come to you often. What a wonderful opportunity!

In keeping with this busy atmosphere, in a couple of weeks we are going to MAYO with the kids to the DANA child development and learning program. The kids will both be evaluated by a team of doctors and a comprehensive treatment plan will be created for them. I am hopeful to get some good input about both of the kids. We are committed to three days at this clinic, and it will be three days of intense doctor stuff. Which reminds me, I should really start talking to the kids about this “vacation.”

I’ve also been writing a lot of letters. And not just letters, but hand-written letters. While at Partners last week, I learned something about our Senators and Representatives that perhaps I had not known before. Typically, when you write a letter to a Representative or Senator their assistant opens the mail and organizes the mail. Here is the typical organization tactic: hand-written letters on top, typed letters w/ pictures underneath (from constituents), then all other letters. Personally, if I write a letter to my Representative or Senator, I want them to actually read it. So from now on, all letters from me will be hand-written. It takes a little longer, but if it increases how likely the letter is to be read, well…..I’m sure you understand the benefit.

Lastly, this past Monday I had an opportunity to meet with my MN House Representative Steve Gottwalt. Man, was he ever a nice guy! Representative Gottwalt is GOP, which means that often we find reasons to disagree on many issues. This time, though, we had many reasons to agree. There are currently two Democratic Health Reform bills in the MN House (HF 3390 & HF 3391) that I strongly oppose. Rep. Gottwalt also opposes these bills, but for very different reasons. For now, he is my ally. And perhaps, if I keep sending him information, he will soften on the single-payer idea (but I’m not counting on it.)

I’ve certainly been on my toes lately, but I am grateful for every opportunity that has been granted me.

Live the Change You Dream Of.

2008-03-26T10:40:00.000-07:00

Vivian over at Danieldoo tagged me for this great memoir in six words.

My memoir?

Live the change you Dream Of.

What does this mean?

It means that change does not stop with desire. It means that change is realized only because of action, and change happens most effectively and most sweepingly from the bottom up.

I've been exceedingly busy these past few weeks doing just that. I've had quite the opportunity to advocate for and speak about the Minnesota Health Act (MN proposal for universal single-payer health coverage for all MN residents.) I've been given the opportunity to meet some amazing people, and without intending to, I have made my own profound impression on several local personalities.

I am living, actively, the change that I dream of.

So why have I chosen universal, single payer coverage as my focal point to advocate for?

Insuring everyone under current private comprehensive medical insurance standards will not be enough. It will not help the under-insured (all of us!) It will not address the misuse of funds administratively by thousands of insurance companies.

Single-payer is the only way to address these issues. Single payer is the way to cut health care costs by 27% if you insure only those who currently have insurance. Single payer is the way to cut health care costs by 5% if you insure EVERYONE.

Universal, single-payer is not just ideology in politics. Universal, single-payer is common-sense policy which allows health care practise to have principles based on the health care model, rather than the business model.

Live the Change You Dream Of.

My kids grow up.

2008-03-14T12:25:00.001-07:00

My Sandis grows up. He has a smattering of freckles across the bridge of his flared nose. He is strong, persistent, and athletic. He is the fastest, the most competitive, the most driven. He is the most of everything.

My Gracie gets older. Her patterned feet, her twisted legs, her fluttering eyelashes far atop pierced and dimpled cheeks. She is painted with pink, her cheeks so rosey as to seem artificial. She is conspiratorial, imaginative, and involved with scores of stories only narrated within her. She often holds a grudge yet despite this, wants desperately to be held, loved, and nuzzled. Gracie’s energy is bright, alive, and creative.

I love them both so differently. Her independence sets her apart, and I forget she needs my touch. His dependence evokes my protective sense, and I forget he needs to be apart.

So different, yet I am so very much in love with both.

Tonight Sandis plays a hockey game at the SCSU Huskies playoff hockey game, between the second and third period. He will be playing hockey in front of a stadium full of cheering fans, and he harbors excitement and no perceptible fear. He is a star, my star, and he wants so badly to be in front of crowds with all eyes upon him. Bob is taking Sandis to the game and they will be the Bob & Sandis duo that is so important for them to be.

Tonight Gracie will accompany me at a movie theatre. I will be undistracted by chores or other family members. I hope to pull her up warmly into my lap and push her hair back between my fingers, curls falling through the cracks. Gracie and I will be the mommy & Gracie duo that is so important for us to be.

I am lucky. God, how lucky I must be.

DFL Monthly Meeting - District 15

2008-03-12T12:32:00.000-07:00

I’m speaking tomorrow at the monthly DFL meeting. Up until recently, I haven’t been all that active in partisan affairs. It seems as though most things I am involved in, although obviously in one camp more than the other, are not considered “partisan” activities.

It seems that not all disabled folk are in one party. Disabled folk (families, children, adults, pre-teens, teenagers) have all sorts of political views, but they all basically want the same things for themselves: Equal opportunity, equal access, etc. Associating with one party over another wouldn’t accomplish what they need, which is recognition of the problem and overwhelming social change to correct it.

Tomorrow evening I will be speaking about the Minnesota Health Act at my district’s monthly DFL meeting. I’ve discovered, and decided, that I am the best person for the job of informing the public in my district about this bill and how it can change the face of health care (and business) in the state of Minnesota. I am determined to dispel myths and invite others on the campaign trail of single-payer universal health care for the state of Minnesota. Fortunately, at the meeting tomorrow night, I will have a captive audience (and hopefully an agenda item after me…) I’m not one to look a gift horse in the mouth, and having people seated with the intent to listen to me is exactly what I need to spread the word about this bill.

Should you happen to live in District 15 in Saint Cloud, please hop on over to the DFL meeting tomorrow night. Just do me a favor, when I have my five minutes to share information about the Minnesota Health Act, please don’t point and laugh. I guarantee I will have something cool to share!

On Poverty

2008-03-11T08:22:00.001-07:00

I’ve been extremely busy lately. I’m devoting quite a bit of my energies to advocating for (and lobbying for) the Minnesota Health Act.

One thing has got me bothered, though. And perhaps it is just my oversensitivity.

What is this bothering thing?

A general lack of compassion among the people I am acquainted with.

I get the feeling that if all the poor people just up and died of some incurable Spanish flu bug they wouldn’t be the worse for wear (my acquaintances, as obviously, the impoverished would be greatly affected.) Unfortunately for my acquaintances, were that to happen, they would realize too late that there is always a “bottom” of the money totem pole, and perhaps they would now be closer to it.

Poverty is not an indicator of a person’s low worth. Material riches are not a “good people” status quo we should all strive to reach.

It is not about money people! Money, your house, your rings, and your fabulous wardrobe do not somehow make your opinion more valuable, more poignant, or more meaningful. It simply means you have the means to adorn yourself grandly, and even perhaps others. That is all. You do not suddenly possess more personal “human” worth as your means grow.

I am not rich. I am not desperately poor. I have been desperately poor. When I was desperately poor I still had fears, I still had dreams, and I still read classic literature with fervor. I was no more and no less “human” or “valuable.” I was, however, less “valued” by society as a whole.

Unfortunate, but true.

A Leap of Faith

2008-03-04T11:05:00.001-08:00

Well, not exactly a leap of faith, but something to that effect. I have lost around 20 lbs since my surgery in September last year. I started at around 168 and I am weighing in around 148 now, with no indications that my weight is beginning to rise. With the decreased weight also comes a decreased insulin need. I would estimate that my insulin usage is approximately half of what it was this time last year. I am averaging less than 25 units per day, and often times I am under 20 units.

The past couple of months I have been adjusting how I take insulin. If my bolus wizard cues me to take 3.6 units of insulin, I’ve been administering 1.8 units of insulin. This has been working fairly well, and although I have had a few lows (and a few highs) it seems about right. Today I took the final step (my leap of diabetes faith) and changed my ratios in my pump. My insulin to carbohydrate ratio is now 1/16 (it was 1/8) and my correction is 1/70 (it was 1/35.) I’m hoping to see some better numbers with this as my intent is to consistently bolus what my wizard prompts me to bolus. This should show me where I am with my ratios (to some degree.)

Other averages of mine seem to be reigning in somewhat since my acquisition of the Mini-Link Transmitter. My morning blood sugars have been routinely fabulous and although I still have the odd night-time low (which I am hesitant to correct yet) I sleep much more soundly (and without inhaling my kitchen beforehand) because my pump will wake me up if my blood sugar drops low. I am still working to correct the multitude of lows that come with losing weight and decreasing insulin needs. I’m hoping my new ratios will help with this, along with the adjustments I made in the weeks prior to my basals.

I am still markedly excited about and pleased with my transmitter. I can’t think of one thing (other than my pump, which I have had for 13 years) which has been more helpful in the care of my diabetes.

Breaking up is hard to do…….

2008-03-03T05:31:00.001-08:00

But seriously, staying together is wayyyyy harder.

Bob (the babe) moved in last Sunday. He is meshing (to whatever extent we both allow) his household with mine, and to be perfectly honest, growing pains in this regard are intensely painful, distracting, and infuriating.

We dither between arguments long enough to make up, only to rage our fires yet again a few moments later. Fortunately the hours 10pm to 6am are blessed with quiet and peace (and a few snuggles.)

I hadn’t any idea that this man I love is so hard to live with (nor he imagined me the same..)

It occurs to me (quite recently) that commitment is no easy game, yet despite all this work (and fighting) I’m certain the end result will be quite worth it.

The Happiness Litmus

2008-02-28T12:32:00.001-08:00

Almost 30 (well, not until August) and I find it hard to believe that these things still bother me.

I’m not one for coyness, nor am I one to diminish ones show of emotions to spare another’s. I am not blunt, nor am I too soft-spoken. I am merely honest, and never with the intent to hurt another.

I have realized, however awkwardly, that as I navigate through life, I am going to meet people that do not like me. I have also realized that on occasion, there will be a great many who count themselves one of that population. It seems to come with the “advocating for change” territory. It doesn’t seem that many people desire to be faced with “solutions” when said solution requires any substantial change in anything that the general population has grown accustomed to.

I do not do what I do to garner further public approval as a public seat is not necessarily on my itinerary. I pursue change, particularly in disability rights and health care rights, because I believe that change can happen. I also believe that people, when properly educated, will make the right decision about disability and health care rights. My challenge is getting the education regarding these topics to the people. My greater challenge is getting someone (anyone) to care enough to listen.

My final challenge is dealing with those people already in my life (although, perhaps not by any choice of my own) that question what I do, my values, and dislike me because of them. I would like to believe it is because they are uneducated. I would love to educate them, but unfortunately certain venues are inappropriate for what can be viewed as “partisan” education.

What is my solution? In my round-about discussion here concerning relationships with others (not necessarily those close to me) and my dissatisfaction at their present status, I have stated no solution, and I fear there is none. There will always be those who dislike me, and there will always be those who think I am wrong. The true test of my character is what I do in the face of that dislike, and how I deal with those who disagree with me. But this is not a character test, no, but a happiness litmus.

I’ve found, minus a solution, a certain comfort in my own understanding of myself. I have also found a certain comfort in Bob’s perception of me (and his love of me.) I value the people I hold dear, who despite my thundering soap box moments and my riveting speeches demanding change, reciprocate my feelings and value me as I value them. Joy, I guess I have found, is not found in those who find reason to dislike me, but more often in those who love me most. So, as my solution, I burrow my nose in Bob’s neck, and nuzzle a Sandis and Gracie, all the while talking on the phone to my mom and sister. For although I have those who would throw rocks, there are many who hold me dear.

Monday Letter to the Editor

2008-02-27T05:27:00.000-08:00

I love writing these things.

I tend to get a lot of comments from people who believe leaving 49 million uninsured and without any health care at all is appropriate, AND makes us one of the best health care countries globally.

Not quite sure I agree with that.

Health Care/Coverage Costs

2008-02-21T18:55:00.000-08:00

I recently promised to keep my readers updated on the specific costs of health coverage and health care for my family. My main way of doing this is to include in the side bar of my blog a running total of my expenses.

Please notice on the right hand side my tallies thus far this year. At this rate I will spend around $6,271.02 on health care this year. Amazingly enough, this is around what I budgeted for (exactly $6367.84). At this rate, I will spend approximately 20% of my income on health care, where currently I am spending approximately 24.6%, and last year I spent around 26% of my income on health care.

One very important factor to keep in mind when viewing my families' particular situation in regards to costs of health care is that both Sandis and Gracie currently have Medicaid. This means that the ONLY person in my family who incurs actual out-of-pocket costs is myself. To simplify even further, my family is spending 24.6% of its income on MY health care. One person.

Is this equitable, accessible, appropriate, affordable health care and coverage? Or is this something more sinister?

You be the judge.

Also, I'd really love to hear from other families with chronic illnesses as to what percentages of THEIR income is spent on healthcare. Call me curious.

On Chronic Pain

2008-02-19T11:00:00.000-08:00

I haven’t talked a whole lot about this because when I choose to moan and groan I prefer it be in regards to grander issues that perhaps citizens as a whole can help to deter through “people power.”

I’ve been in constant, yet varying amounts of pain since my back surgery in September. I have had week(s) where I felt my pain was improving followed closely by weeks where my pain became yet again a personal adversary. I’ve seen my pain medication dosages titrate up, titrate down, then back up again. And on occasion, I’ve felt desperate and helpless enough to cry.

Yesterday was a big day for me. Two weeks ago I decided that I needed to transfer the care of my medication management for pain to my primary physician (rather than my surgeon.) I also decided to call a local interventional pain management clinic (which helped me years ago with a neck injury) and seek care there as well. I saw both yesterday. I saw my primary physician first. He changed my medication regimen slightly, hoping to help me better control my pain. We discontinued alleve and ultracet and began ultram, supplementing with Tylenol as needed. Later that day I saw my pain management physician who began with recommending another MRI to help determine what type of pain I am having (bone, disc, or muscular.) When this is determined he can help to recommend different types interventional therapies to treat my pain. Lastly I scheduled an appointment with the doctor I began with before surgery from the Physicians Neck & Back Clinic. This clinic specializes in especially intensive physical therapy (pain is a part of their game.)

My pain frustration is high, and some days I believe that this pain is forever. When I feel like this I also want to cry. Because of my history of addiction to narcotic analgesics, I am being very careful. I am avoiding narcotic pain medications at some personal expense, which is increased pain. I can’t constantly be on narcotics, regardless of my pain level. The tramadol is a good solution to my pain without the nasty side effects, but even that can make me tired and can decrease my ability to focus. There is no even ground with chronic pain.

Oftentimes I find myself wondering, would I take my surgery back to have less pain and need a cane? Or would I rather be walking care-free but unable to sit or stand comfortably because of my pain?

There is no answer. No answer at all.

Support the Minnesota Health Act!

2008-02-14T07:01:00.000-08:00

The Minnesota Health Act (single-payer universal health care bill) needs you
at its Senate Health Committee hearing

Monday, February 18 (Presidents Day), 12:30,

State Capitol, Senate Health Committee, Room 15, below the rotunda.

We need to pack the hearing room to outnumber the 25 or more health industry
lobbyists who will be there in full force to oppose our bill.

We will wear labels saying "Minnesota Health Plan, YES We Can" to show our
greater number to Committee members and media.

Don't miss this momentous step toward single-payer universal care in our
state. Tell your friends.

Minnesota Universal Health Care Coalition, 651-646-0900

Housing Coalition, Volume 3

2008-02-12T08:20:00.001-08:00

I’m sure you recall (if you read my blog anywhere approaching religiously) the problems I’ve had in the past with my property management company: The Housing Coalition.

I’m sure you are also aware that Bob and I are changing the composition of our relationship in the coming months. We have changed a few things about the order of events in the past few weeks. Namely, Bob is moving in a little earlier, we are getting married much earlier than November 1st, and we are having a celebratory party on August 2nd of this year instead of a big shindig on November 1st. As a result of all this change in initial plans, we’ve been on the phone with the Housing Coalition working out getting Bob onto my lease.

Things never seem to go as planned when the Housing Coalition has any involvement. We did have a misunderstanding, but fortunately this time around we were able to come up with a plan that is moderately accommodating for Bob and I but is still within their regular policy.

This morning I received a phone message from the interim director of the Housing Coalition. He first apologized for the misunderstanding, but then he surprised me. He went on to thank me for my most recent letter to the editor.

He’s not the first to mention this, as my pharmacist got a word in to me about it the day after the letter was published. I’d have to say, though, that this is not a race! It is good to know, 7 days later, my letter is still on the minds of the public.

I think he just about made my day!

Associate Chair & CGM

2008-02-08T09:45:00.001-08:00

Bylaw The precinct caucus may elect associate chairs to assist and aid in the organization of the precinct for the party in accordance with the Constitution and Bylaws. These associate chairs should be listed in the caucus report to higher levels of the party and may be the alternate for the precinct chair on the county unit central committee.

So that is what I do for my precinct, which most specifically is SD15A W4 P1. I still haven’t done anything for the DFL, other than sending an email to my Precinct Chair. I’m still somewhat impatiently waiting to see what comes of this opportunity, which I thrust myself unwittingly into.

Yesterday, all by 12pm, I consumed 1,165 calories. The majority of these calories were regular Pepsi. Can you guess why? Ahhhh, yess. The unresponsive low. That was yesterday morning. I had a hard time staying within my daily calorie allowance (1541) seeing as how I was over 2/3 there before I even had lunch. The result? 500 calories over. Such is life. I am destined to be fat forever (I know I’m not fat, I’m actually around 152 lbs, which is 22lbs lighter than I was in January of 2007, but still, I’m a woman, give me a break.)

I’ve been wearing my handy dandy minilink for over 3 weeks now. I figure I may as well as report on it, and its greatness. This thing is fabulous, if only because I can finally sleep at night without fear. I was actually able to reduce my night time basals by .65 in the first two weeks. Why is this? Because what is not apparent in random night time finger pokes is immediately apparent on the minilink, which registers blood sugars every 5 minutes. Now, keep in mind, the blood sugars are typically 20 minutes behind what is actually happening, but….and this is a transformative but, what shows on my pump is a true illustration of what is happening with my blood sugars. I was able to see, in the first two weeks, the massive dive my blood sugars were taking from 12am – 5am and as a result, I was able to adjust my basals. No more basal testing!

As a result of this basal change, at first I ran high in the mornings after. Why? I was so accustomed to not bolussing for carbs after 9pm, that I continued this practice. I figured it out fairly quickly. Now I see a nice flat line at night. I still run between 140 – 180 as I’m not yet comfortable running lower (huge fear of nighttime lows is still rearing its beastly head) but I intend to inch myself closer to a healthier bottom line at night.

I mentioned earlier that this thing runs around 20 minutes behind what my body is actually doing. So how does this help alert me of lows? Obviously, my cgm does not keep up with rapid glucose changes, but (and yes this is another transformative but) I’ve noted that if I’m trending down and my blood sugar on the pump says 100, I’m probably closer to 60. I’ve also set my low limit at 95, and typically when that low alarm goes off, I DO need a snack.

As for the sensors, I’ve heard mention that some folk are able to make these things last for 2 weeks. I’ve tried, but I just can’t get past six days. It isn’t that the sensor quits working, though; it is that I have extremely sensitive skin and at six days I’m ready to rip the sensor out because of the itching. I have also had problems with tape, but I’ve had success with two different alternatives to secure the minilink to my skin: Tegaderm (uber expensive) and bandaids (not uber expensive.) The look I want (Tegaderm looks prettier) and how much tape I have left dictates my choice in this regard.

So has the minilink CGM investment been worth it? ( I do have insurance coverage, but I pay 20% after a $1, 125 deductible.) Absofreakinglutely. This thing has changed my life. The minilink CGM has changed how I manage my diabetes, and honestly, it has given me back a quality of life that I had lost for years after becoming less and less cognizant of low blood sugars. I no longer live in fear. I test an average of 6 – 7 times per day instead of 15+. I no longer remember which finger I am “on” and I believe I’ve poked my right pinky for every blood sugar test for the past two days. This isn’t as big of a deal when I’ve cut my blood sugar tests by more than 50%.

And my blood sugars? I think they are doing better, and primarily I would say because of the basal changes to nighttime. I’ll find out more next time I have my a1c. I’m hoping for something better than my last 7.6 (ouch!) So that’s that, and what’s what in CGM for Sarah.

Information & Organizations

2008-02-07T11:07:00.000-08:00

Are you curious about how universal health care works in Canada? Here is a great what’s what about health care in Canada: http://www.ourfuture.org/blog-entry/mythbusting-canadian-health-care-part-i

It seems I’ve managed to join yet another organization. Despite contention that perhaps I have too much on my plate, I am greatly intrigued by this particular network. The Minnesota Parent Leadership Network is: “A parent-driven and family-affirming children’s mental health system of care.” Their vision? “To connect, educate and support parent leaders to command change, demand solutions and transform systems of care.”

Sound like someone you know?

Speaking of organizations, if you live in Minnesota and you support and believe in the benefits of single payer universal health coverage, consider joining forces with the MUHCC (Minnesota Universal Health Care Coalition.)

Caucus Events & the American Dream

2008-02-06T05:29:00.001-08:00

I attended my first caucus yesterday, DFL caucus to be sure.

I walked away in a bit of a daze, appointed as the new Precinct Associate Chair and buzzing a bit, also, over the 26-8 Obama tally in my precinct. I was also a bit abuzz about the two resolutions passed in my precinct, with absolutely no opposition, in support of comprehensive, universal, and in one instance single payer health coverage for all Minnesotans.

Wow.

I find myself wondering how exactly I managed to take on one more task (intriguing as it is) and then conversely wondering why exactly I stayed “inactive” politically and in the community for so long prior to this year.

There have been events in my life which have led me to this path, primarily my family. As time wears on, my political and community focus seems more and more clear. I have developed personal stances on health care, poverty, community voices, disability policy, and so much more.

At first it seemed that my focus would be only special education and disability issues, but somehow my scope has broadened. I believe that my personal experiences only make my focus more valid.

Soon after I began Partners in Policymaking I resolved to have no fear of, nor shame in regards to, my past. Yes, I was in treatment for substance abuse. Yes, during this time period my children were in foster care and I was involved with child protective services. I completed treatment. I spent 90 days in a halfway house. I moved to Saint Cloud with no furniture, no means, financially and spiritually broken. I have been a broken spirit navigating a broken social system intended to help, but in actuality perpetuates the failures that drive its services.

Slowly, and through grace and personal persistence, I have been able to rebuild my family, myself, my home, and my spirit. I have a small degree of personal success. There is order in my home, compassion in my heart, and smiles in my children’s eyes (and on their faces). I wonder why my story is unique. Success, although limited, is not necessarily encouraged in our society….and failure is used to quiet the social masses.

We are all human, and we all have basic human rights. I regularly meet low-income, poor, and broken individuals and families. They are stuck in a system that is content to leave them broken, and does not encourage healing.

This is why I support universal health care under a single payer system. I support equity in health care, with receipt of such care recognized as a basic human right. I support equity and equal accessibility to higher education, housing, jobs, transportation, and healthy food. I support healthy communities with programs in place designed to help children and families succeed. I support programs that allow families on assistance to have things like savings accounts (with real money in them) because this breeds independence from welfare programs. I support back to work programs which do not include the “cliff” of loss of benefits when you begin a job.

These are my dreams for America.

What are yours?

(And while you are up and about blogsurfing, check this out.)

In the Paper

2008-02-05T09:35:00.000-08:00

I just can't seem to stay out of the paper lately ;)

Check it out!

Caucus Much?

2008-02-05T05:43:00.001-08:00

Today is the day, in Minnesota, where those in the DFL can go to their caucus and do their part (in our two-party system) to ensure that their voice is heard. Go here if you aren’t sure where to go tonight!

I am doing my part to ensure that at least a small portion of low-income DFLers attend this event by inviting friends and neighbors, and even being the “ride” to the event.

What do I believe the platform should be for DFLers across Minnesota?

I’ve made it fairly clear here my stance on single payer universal health coverage, but I also want to have a hand in encouraging low-income and middle-income Americans to find their voice in politics, be it in regards to taxes, rebates, health care, public transit, employment, housing….All those things that are important to citizens, but are just a little different if you aren’t making median income and you don’t own a home (or you do own a home but can’t figure how you are managing to pay for it…)

Every voice is important.

I'm Not From Colorado, But.....

2008-02-03T06:46:00.001-08:00

This is just too good.

Desperate Times Call for Desperate Measures

2008-01-31T11:24:00.001-08:00

I believe that the American people have forgotten that they can truly create change.

I wondered recently, quite publically, why no one seems to have heard of HR 676, which I discussed in my most recent post. I have also wondered, more privately, what would happen if people DID know about HR 676, and as a result of that knowledge, began calling and writing their representatives voicing their support? I’ve wondered about the many families I’ve met that are literally crippled by the current health care situation in the United States, and more concisely, their lack of appropriate and affordable health care. I’ve wondered if they know about HR 676. Even if they do know, would they know what they can do to support this bill?

I’ve touched a lot recently on health care/coverage, and the elitism in the United States. I’ve discussed Human Rights, and the Universal Declaration of Human Rights created and published in 1948, which stated in no uncertain terms that medical care is a basic human right.

I’m tired of just writing about this, and I have decided that it is time to take action. But what can I do that I am not already doing? I write my legislators, I make myself a big pain in the ass, and seriously (although I’m not officially declared this) my coworkers have not a clue what to do with the one “Greenie” among them.

So what am I going to do that is different from what I’ve already been doing?

I am going to assume that people just don’t know about HR 676. I am going to start leaving copies of this bill in places that I visit throughout my day. For instance, this afternoon I am visiting my endocrinologist office for training on my MiniLink. While perusing the waiting room, out of my bag I shall pull my 27 page HR 676 document and leave it promptly on a table with all the other magazines, where it surely will be seen. Perhaps it will even be picked up. And should it be picked up, I imagine that most patients in an endocrinologist office might be interested in what it has to say.

I am not just going to do this today; I am going to do this every day, once per day. I haven’t set a date that I intend to stop inconspicuously informing the public masses. Perhaps I will stop distributing HR 676 when it is passed into law, or conversely when it is defeated in the House. Either way, I believe I have found a fabulous way to share the “goings-ons” that perhaps the media, due to some “big-money” interest or another, have found undesirable to share with the general public.

As an afterthought, perhaps you would care to join me in my campaign? Go here and print your own copy. Leave it anywhere you think people may find it!

Amazing Change on Our Horizon? HR 676

2008-01-30T04:59:00.000-08:00

We don't hear about this stuff on the news. Why not? Do they not want us to know?

Fortunately, with the help of a wonderful listserve from the MNUHCC (Minnesota Universal Health Care Coalition), I have heard about this.

This is a real bill in our very real Congress.

Now would be a good time to call your Representative to tell them just exactly how much you support this bill. Even better, after you call, write them a letter.

After you finish all that, go back here and read everything there is to read about this bill. While you are at it, use the power of google, and search HR 676 and see what you get.

Knowledge is power.

Newspaper Funnies

2008-01-29T08:26:00.001-08:00

I read an aside in the Saint Cloud Times today about the health clinic in Cash Wise and how they have added a “handicapped accessible” exam room recently.

Sometimes, when I read things like this, it really makes me wonder.

Wasn’t the ADA signed into law in 1991?

This clinic was built only a few short years ago into the existing Cash Wise structure. Why wasn’t the clinic accessible to begin with?

I enjoy reading the paper, because at times, it really makes me laugh (at others, not in general joviality.) Lucky me, I also got to read about the President’s State of the Union Address. The best part about this was a quote published “in response” to the President’s speech.

Representative Tim Walz: “I’m pleased that this is President Bush’s last State of the Union Address…”

Well, Representative Walz, I am googling you now because seriously, you just made my day.

May The Force Be With You

2008-01-23T07:33:00.001-08:00

It seems that intense bouts of happiness render me fairly useless in the writing arena. It isn’t that I have nothing to update, it just suddenly all seems less important than mooning over Bob love and planning weddings with a red dress and a band bent on jazz.

Our wedding budget seems less tangible lately, and I find myself thinking longingly of Visa, Discover, and Mastercard. (And let us not forget JC Penney.)

I hadn’t any idea that weddings involved all the things that they actually involve. While in discussion with mister Bob last night, he muttered something along the same line (furthered by muttering something like “money …..lots of money….”)

I find myself thinking of Star Wars, and the “force”. I’m wishing: “May the Force of Not Using Credit Cards Be With Me.”

November 1, 2008

2008-01-21T11:03:00.001-08:00

Many things will come to pass on November 1st of this year, the most notable being that I shall no longer be a Rittmann and will commence my life as a Waline.

Amidst frigid temperatures in Saint Cloud this past weekend, my beautiful Bob the Babe theoretically dropped to one knee (okay, not one, nor even two, but stanced evenly on two feet) and asked me to spend my life committed to him in marriage.

I, of course, accepted.

Should you happen to be in Saint Cloud these next few days and wonder about its unnatural glow, understand that it is most assuredly the residual of my happiness.

Check It Out

2008-01-18T12:49:00.000-08:00

I know I can download this stuff from my pump and look at the charts from the minilink, but I still have to have my own stuff. The red is the sensor, the blue is finger pricks.

On Friendship and Day Care

2008-01-18T10:01:00.001-08:00

Sandis came to me last night, somewhat sad, to tell me this: “Mom, I’m kind of feeling like none of the kids at day care like me. I’m kind of feeling like I don’t have any friends and no one likes me.”

I was distracted when he told me. I wanted to continue what I was doing. I wanted him to be in bed. I wanted him to be where he was supposed to be (in bed). I wanted these things, but I also recognized that Sandis was trying to deal with and understand something that can be extremely painful. Growing up, I can never say I was popular. I was more like the antithesis of popular. I was the anti-popular, which of course, meant that I was the butt of many painful jokes and exclusionary activities. I remember dreading going to school because I would have to deal with the children. I would have been happy (beside myself really) had I happened to arrive at school and all the other children in my class had just so happened to not show up. Children were cuttingly cruel.

My memories from childhood in regards to other children are vivid. I always felt inadequate around my peers. I was always scared of how whatever I said or did would be used against me at some point in time. I was acutely aware of the fact that I could not enjoy anything “cool” because upon recognition of that fact, it would suddenly cease to be cool in the minds of the other children. I enjoyed spending time alone, and although I attempted to culture relationships with other children my age or younger, I had little success until I was old enough to do drugs (I’ll spare you the specific age). In that circle the children were much less discriminating.

It is acutely painful to watch my son in this same predicament. I had somehow hoped that the unforgiving brutality of children in their relations with other children would have morphed into something more humane and nurturing over the passage of time. I am without words when he tells me of his painful circumstances.

The other day he went up to one of the teachers in his sister’s day care class and told her essentially the same thing that he said to me last night. My boy is reaching out. My boy is reaching out and for the life of me I cannot change other children. I know that there is only so much that you can do from the outside to change the demeanor of children that do not know nor have the maturity to understand the implications of their simplistic demeanors. I also know that many of the problems my son has socially lie not only with other children, but in his inability to understand social scenarios. He misses so many cues, doesn’t understand appropriate responses, and has very little understanding of personal space. I want so badly to help him, but I’m feeling stumped as to what to do.

In school Sandis does fabulously, which is no wonder as he has amazing supports there. Sandis has a team of professionals (including myself) that work with Sandis to help him navigate the intricate social systems of first grade and elementary school. Sandis doesn’t have that in day care. Sandis is on his own in day care, and it is no wonder he is overwhelmed and underserved because of that.

I need to figure out a plan to help Sandis function better in day care with his peers. I can’t change Sandis’s peers but I can help him to better deal with a situation that is hard for him, and hopefully in that process Sandis will grow even more into the confident young man that he is meant to be.

Consider this a networking occasion. Please tell me your ideas on how to better help Sandis deal with day care. Ideas I’ve considered are :
1. Visual Schedule for Sandis in the morning that he can carry with him.
2. Visual Reminders of a Transition (Teacher hands Sandis a card at 10 min & 5 min before major changes (like catching the bus or going outside).
3. 1 Social Story per day (is this possible in a day care?) on dealing with peers and difficult situations. I’m sure they could do this with the entire class. It would help everyone in the end, but these sorts of things would be especially helpful for Sandis
4. Chart of Calm Down and Rev Up Activities to help Sandis switch gears. So, if a teacher notices that Sandis is really struggling with whatever activity he is working on, he can go to the chart and pick one of the calm down or rev up activities (whichever he needs to do) and do that for 5 minutes.
5. Visual Schedules for Sandis to help remind him of what to do when there is conflict.
6. Weighted Vest

On a different note, I’ve been wearing my MiniLink for over 24 hours, and it is fabulous. I was worried the alarms wouldn’t wake me up, but they most certainly do. I think my pump woke me up at least five times last night. I was high though, not low. At least I know they wake me up.

8 & 5

2008-01-16T07:17:00.000-08:00

Gracie turns five in April. Sandis turns 8 in August.

I’m caught, wondering exactly when it was that my babies grew into such remarkable young children. Their legs are no longer bowed, their faces no longer cherub, and I’m caught. I’m caught wondering when exactly they became so beautiful, so striking, so affective.

I sneak in gazes at my Sandis and I can imagine him another 7 years from now with gangly legs, mussy curly hair, and freckles spattering across his perfect nose.

Gracie doesn’t mind me staring (well she does, and she isn’t sweet about it, but she does like being admired, so if you pose your stares in the correct format, you can stare all you like.) I imagine her at Sandis’s age with thick brown hair cowlicked with curls all about her head and deep brown eyes accentuated by her two perfect pin-prick dimples. She is what is referred to as petite. Before Gracie, I hadn’t any idea exactly what petite referred to. (Smaller than me.) Now I understand that it means a cross between “little” & “short”. And in being more than a little little and more than a little short, you are perfectly proportioned “petite.”

My kids are quite possibly the most beautiful children in the whole entire world (no offense to all you other mothers.)

When embarking on the journey most often referred to as “motherhood” no one ever told me that children only grow more beautiful with time and love grows exponentially with each birthday celebrated.

How awesome is that?

Tomorrow

2008-01-15T12:22:00.001-08:00

It is hard to believe, in fact, I’ll believe it when I have my grubby hands on it. I spoke with Medtronic on the phone moments ago, and it seems to me that with very little effort at all they received a reference/approval # in regards to my CGM MiniLink purchase and I should expect to receive said product as early as tomorrow.

Hard to believe.

I’m still waiting for the other shoe to drop. I have experienced a certain amount of disbelief dealing with this new health insurance company. Blue Cross Blue Shield was such a struggle in regards to, well, ANYTHING. Definity Health thus far has been extremely accommodating, helpful, and knowledgeable (as in the person who answers their customer service line can actually be relied upon for an accurate answer).

Acquisition of this prime piece of DME will mean exhaustion of my initial “HRA”, plunging my family into our $1,125 worth of “member responsibility.” I’m expecting my health costs to be shooting up immediately after tomorrow. Should be fun.

Upcoming Plans for 2008

2008-01-14T11:47:00.001-08:00

My boss recently told me that she feels that I thrive when I am challenged.

This is a very interesting perception in regards to my personality. After some introspection of my own, I was astonished with just how accurate it is.

I have no problem stepping up to the plate. In fact, I do it with an exaggerated flourish. When facing a challenge in which the outcome is perhaps uncertain, I find myself writing more passionately, experiencing life more intensely, and upping my levels of organization and activities to accommodate my “new” challenge. I accomplish the most mundane, ordinary tasks more effectively when fed by looming challenge, even when the challenge is unrelated to the task.

Conversely, if there is no plate to “step up” to, I tend to languor in contented complacency.

This week I expect to “graduate” from physical therapy for my back. I will no longer be the participant of two 50 minute strengthening sessions per week as I seem to have turned a corner in regards to pain in my back, and I have built up a wonderful core strength reserve. Yay! I also intend to complete my Occupation Therapy myofascial release sessions. What does this mean? This week ends my hectic four appointments per week recovery schedule post-surgery. I will have some much needed pause in my schedule.

I began Partners in Policymaking in September of 2007. In this program, despite having an intense recovery program to adhere to in this same month and month’s following, I have learned just how capable I am of adding “one more thing” to my list of responsibilities and endeavors. I have spent countless hours reading, writing letters, reading, and then writing even more letters. The knowledge I have gained in the area of disability advocacy and effecting positive policy change to affect entire communities is incredible. I am convinced that my life has found a personal & career direction that it previously lacked.

What does this mean? I graduate Partners in Policymaking in May of 2008. In June of 2008 I intend to go “back to school” (as in college) in pursuit of either a political science or social science degree. I intend to focus not only my personal endeavors, but my future career endeavors on disability policy advocacy. Partners really gave me the confidence to pursue this, as I know that I can handle the load of a class or two per semester. I also know that if I choose to pursue a career in disability advocacy, while I can garner much professional experience without a degree, I can accomplish so much more with a degree.

So wish me luck, and as we get closer to “take-off” I’ll share more of my plans in this regard.

This Is So Cool

2008-01-09T18:00:00.001-08:00

Below is an email I received from a Minimed Associate in regards to my CGM Mini-Link:

Hi Sarah:

Great news! Just wanted to follow-up with you to let you know I was able to get the benefits for your Transmitter and Sensors. These items are covered.

Take care!

Regards,

Patricia Egger
Insurance Verification Specialist, SOS Insurance Verification
Medtronic Minimed
(818)576-5911
(800)646-4633
Fax: (818)576-6339
Patricia.egger@medtronic.com
Alleviating pain, Restoring Health, Extending Life

I'm still waiting for the other shoe to drop. They still have time to deny this claim. I'm still crossing my fingers, but I'll be damned cuz from here, it's looking pretty good!

A Letter to the County Commissioner

2008-01-09T05:01:00.000-08:00

Recently I wrote a letter to my County Commissioner about the need to train Children's Mental Health Case Managers on programs offered by the Community Supports Division.

I've posted two .jpeg's of my letter, which was CC'd to me in PDF form when the County Commissioner forwarded them to the Director of Human Services for Stearns County.

I can only hope that good things come from taking the opportunity to share our experiences with someone who can truly make change in the system I am discussing.

CADI (Community Alternatives for Disabled Individuals) Waiver Success!

2008-01-08T11:18:00.000-08:00

To learn more about the CADI waiver, go here.

After quite the struggle, Sandis was eventually assessed for CADI Waiver qualification. Lo and behold, he was found to qualify. However, the CADI waiver is not an entitlement. This means that if you qualify it does not mean that you automatically receive a waiver. The next step is your “case” goes to a committee and they decide whether or not the individual will actually receive the CADI waiver he/she qualifies for. Sandis’s “case” went to the committee last Friday and God’s above he was given a CADI slot! The final step is to be awarded a “budget”, at which point you determine how you intend to use your CADI funds.

I find it hard to believe that he actually received a CADI slot after all the county did to “discourage” me from having a Long Term Care Assessment for Sandis. This is a wonderful example of what happens when families are educated about county systems and benefits. The education lays the groundwork for families to more efficiently seek services for themselves and their children that most closely meet their needs.

I can look back at this blog and I see victory after victory after victory when it comes to services for my family. Our victories (for Sandis) include having a para-educator for Sandis in school, qualifying for PCA services, and obtaining a duplicate key from the Housing Coalition for Sandis’s PCA. The waiver is just the next victory, the next step on our path to help ensure that my guy, my Sandis, is successful.

When we expect failure, we accept things as they are and set ourselves up for just that: failure. When we expect success, we do everything within our power to ensure that we are just that: successful.

Not Even a Phone Call?

2008-01-04T09:33:00.001-08:00

The Saint Cloud Times didn't even bother to let me know they printed this letter.

Only by the grace of a google search in my name (don't ask why) did I happenstance across this gem.

Life is good :)

A State of Morbid Mind

2008-01-03T10:30:00.000-08:00

I stockpile things. Well not ALL things, but more specifically I stockpile diabetes supplies. Why? Why is it that I don’t stockpile water and food but I have a slew of syringes, pump supplies, test strips, and an over-abundance of insulin?

In the back of my mind I venture places that I otherwise would not dare. I imagine situations of war, terror, or natural disaster and in these places, I calculate the number of days or weeks I would live off of the insulin supply I have. I plan ways to conserve insulin in these situations, and I imagine that should there be a natural disaster or act of terror that permanently destroys our infrastructure my first act would be to loot the pharmacy and take ALL the insulin I could, no matter the type of insulin, just whatever I could fit into my pack and carry. That and syringes. I imagine guarding these precious supplies as if they were my life, which in all actuality they would be.

So what about you? If I haven’t triggered hoarding tendencies by this post alone, perhaps you already stash a sizable amount of supplies “just in case.”

This reminds me, I really do need to get more syringes…….

Health Care Expenses in 2008

2008-01-02T10:55:00.000-08:00

I’ve been focusing on health insurance coverage lately. It’s no wonder with SCHIP up for reauthorization over the fall(what a miserable failure this was), followed by fear of losing Medicaid for my peanut, and the change in the type (and quality) of health care plans offered by my employer. My dismay concerning the health coverage situation for those of us on the “right” side of the health insurance fence (to say nothing of those who AREN’T insured) only grew as I calculated my own annual health expenses (out of pocket including premiums)and discovered that I had managed to spend over $9,000 in 2007. At almost 27% of my entire income, health care was my primary expense with rent following at a close second (around 23%).

My situation can’t be hugely different from many other insured Americans with a chronic condition (or two). Why is this allowed to continue? This disproportionate burden of cost is stifling for Americans whose alternative to investing this amount and percentage of their income on their health is summarily a loss of health.

So what am I going to do about all this? First of all, I am going to continue to write about the expense of health care for insured Americans. Secondly, in recognition of the new year, I plan to track my medical expenses throughout the year on this blog. I haven’t yet created a space in my sidebar, but along with my blood sugars & averages currently posted, I intend to add my own personal ticker which will show what (thus far) I have spent on things like Test Strips, Premiums, FSA deposits, Insulin Pump Supplies, Sensors & Supplies, %’s of therapy & doctor’s appointments, and basic prescriptions. I also intend to keep a published log of what my total YTD out-of-pocket expenses are for health coverage & health care (accompanied by what percentage of my total YTD income this is). Keep an eye out for this on my page, and I will keep all of you updated as I venture through my own public awareness campaign.

I am going to be sharing these expenses with the public because I know my family is not unique. I also know that fixing the problems of health expenditures for “only” my family is not appropriate. There needs to be a global repair in the health care system that will allow for universal affordability AND accessibility. I don’t have the solutions in regards how to make that happen, but I am going to be a part of telling MY story so perhaps other families will be inclined to do the same. Also, I’m greatly interested in what percentage of income other families are spending on health care. So please, if you know this tidbit or are inclined to figure it out, please send it my way!

Playing Memory

2008-01-01T09:19:00.001-08:00

Last night we let the kids stay up until "midnight". "Midnight" is actually ten pm with the microwave clock set two hours ahead. That means that Bob and I got to celebrate New Year's twice. Perhaps we are cruel, but everyone was happy in the end. The kids got to stay up until "midnight" and weren't much crabbier than the norm getting there!

Last year we played a little bit of twister and got wild with the guitar. This year? We settled down for some mellow "memory" (well as mellow as staying up late playing memory can be in my family!)

I also managed to get in my annual "questions".

What was your favorite thing about last year?
Gracie - Playing Lightsaber
Sandis - Playing Lightsaber with Gracie & Mom & Bob
Bob - Tickling Sandis & Gracie
Mom- Going to Denver to celebrate Mom's graduation

What was your favorite song?
Sandis - I'm Proud to Be An American & This Land is Your Land (how did he get so Patriotic? Do I have a politician on my hands?)
Gracie - Twinkle Little Star (Seriously, I would have bet on Rudolph the Red Nosed Reindeer seeing as how that has been all I have heard from my back seat these past few weeks!)
Bob - Broken Boy Solider by the Raconteurs
Sarah - Back to Black by Amy Winehouse & 300MPH Torrential Outpour Blues by The White Stripes

What was your favorite Christmas gift?
Gracie - Checkers (Rudolph checkers no less)
Sandis - My playstation game NHL 2K5
Mom - My bookcase
Bob - My mp3 player

What was your favorite movie?
Sandis - Star Wars VI (oldy by goody - Anakin came back from the dark side)
Gracie - Charlotte's Web (I hate this movie, really really really really hate it)
Sarah - Star Wars III (This love tragedy moves me time and time again. I love this movie!)
Bob - The Kingdom

Lastly, I'd like to close with a picture of my weight. I know, I really don't have to, but really, the last time I weighed this little, I was pregnant soon after (meaning it didn't last that long, see what happens when I'm hot?!!) And no, I don't plan on being pregnant anytime soon (not like ever).

CGM MiniLink Ordered!

2007-12-31T08:24:00.001-08:00

I’ve waited a long time for this day, and I’m hopeful that my “new” insurance company doesn’t boot my hopeful ass out in the parking lot with this order. When I called my new insurance company they stated that I don’t even need a prior authorization for this product. The person (people) I spoke to were one of the following three things:

1. Liars
2. Misinformed
3. Extremely helpful well-informed and accurate customer service representatives

If I were to heed the law of averages (how often have your health insurance customer service reps been helpful, well-informed, & accurate), I would be pretty bummed right now, but I’m not allowing myself to feel the pain of the “what ifs” of 1 & 2.

Obviously, I’ll let you know what happens. Till then, take care, and damnit, happy New Year!

Back Pain, Low Blood Sugars, and Lost Weight

2007-12-29T11:09:00.000-08:00

I began 2007 weighing a prime 174 pounds. I will begin 2008 weighing a mere 157 lbs. At 5'7, 157 lbs. I am now no longer considered overweight by the stiff medical profession. I am also not exercising as often (but I am exercising), nor am I running, but perhaps at some point in 2008 I will resume my old patterns of exercise. I should hope that I will be able to as I continue to build up strength in my leg and back and decrease my pain level.

I had my back surgery in September of 2007. Tough stuff. I mean, the back surgery is tough. I am experiencing a lot of residual pain in my back which has required more vigorous pain management than I had anticipated. Currently I am doing physical therapy strength training twice a week for 50 minutes, and in January I will begin myofascial release therapy on my back as well. I switched from daily taking a Lorcet or two (way too strong for daily use!) to now I am taking trammadol a few times a day with ibuprofen to help manage pain. I would have to say that post-surgical pain in my lower back has been the most frustrating part of my experience. While I have gained a huge amount of strength in my leg and I no longer walk with a limp (or gimp), the pain is something I daily deal with. I hope that with the aggressive treatment plan I have that the pain will continue to improve. On a positive note, the pain has been improving and I have been able to reduce my trammadol intake from 8-10 tablets per day to around 6 per day.

Since my surgery my insulin intake has drastically reduced. I used to take around 40 - 45 units of novolog per day, now I am taking 20 -25. I am having a LOT of lows lately, and I've been reducing my basals like clockword (meaning every other day). With a track record like this, January 2nd can't come fast enough (that is when I order my MINILINK!)

Oh, and my a1c? The joy that it is was recently 7.6, which is the highest it has been in three years. At this height, all it can do is go down right? And with the lows I've been having I'm sure it will! I'm hopeful, also, about the Minilink technology assisting me in lowering my average sugars. I typically don't feel my lows, which means I tend to let them run a bit higher if I can't check every hour. There is a lot of fear involved with not being able to sense low blood sugars!

But Isn’t She a Diabetic?

2007-12-27T10:53:00.000-08:00

The choices one makes as an individual with type 1 diabetes regarding food(or the mother of a child with type 1 diabetes) are not choices that should be spotlighted with intent to denigrate said choices.

A person with diabetes (or a child with diabetes) should not (and in my family will not) be limited in their food choices merely due to the presence of sugar (or other simple carbohydrates). For those who are not aware, the dietary guidelines for type 1 diabetes are extremely individualized and very much different (and at times contrary to) from the dietary guidelines for a person with type 2 diabetes controlling their blood sugars with diet.

You may (and should) refrain from raised, questioning eyebrows in response to any mention of cake consumption in my family. We can, and do (but not necessarily often) eat cake in my household. We are particularly fond of tiramisu, which may be one limiting factor in regards to our cake consumption. Please note that the limiting factors in regards to the “sweets we eat” typically does not include the fact that two individuals in my home have “the diabetes.” Typical limiting factors of “the sweet” include:

1. Refusal to eat green beans (You can’t have any pudding if you don’t eat your meat (veggies.))
2. Prior “sweet” ingestion in that same day.
3. Whether or not we like the “sweet” in question.
4. Time and motivation to “prepare the sweet.”

I have diabetes. She has diabetes. Wouldn’t you like to have diabetes, too? (sung to a tune, you know the tune.)

Behaviors & What Came First?

2007-12-26T07:08:00.000-08:00

I have quite a bit of experience with “behaviors” in children seeing as how my son’s disability seems to be primarily distinguishable (at least initially) by his “behaviors”. I have a hard time with that word, because the implication isn’t a good one at all. What this doesn’t communicate is that my son’s behaviors (and my daughter’s for that matter) are a means to an end, a communication when communication is extremely difficult. I have been blessed in many ways because my son does communicate verbally very well, but that does not mean that he lacks in his “non-verbal” communications in any way. In fact, Sandis often tells me some of the most important things by his actions rather than his words.

While browsing comments on another blog recently, I came across a few comments that irked me to no end, which got me thinking on this topic. One comment was that this reader knows for a “fact” that single mothers train their children to act out in school in order to receive SSI payments for them. Don’t even get me started on this one. The other comment was that oftentimes a child’s behaviors are a result of a lack of structure or boundaries provided by the parent. This stopped me, and in a sense confused me.

If the nature of a child’s disability is defined in part by their unawareness of specific structures and boundaries (whether they are provided or not), how can one truly judge if their lack of boundaries is parent-induced or more a symptom of the child’s disability?

I have to admit, I am sympathetic to a fault to all the parents in grocery stores or any store that are having behavior issues with their children. Why? Because every single time I go to the store with my son it is difficult, at times tear-inducing, and certainly fear-inducing. Sandis will tell you, frustration etched into his brow, how much he hates stores. He says it is loud and there is too much going on and he isn’t able to make good choices in them. In tears he will tell you how hard he tried but there were just “too many people.”

It is these times, or later as I reflect on them, that the dirty looks I am often the recipient of in stores don’t mean as much, or sting as much. I think that these people really don’t know, and how could they? Compassion for the parent and child is certainly lacking in these parts (America) and typically a non-typical child minus a physically apparent disability isn’t going to get much sympathy from anyone (but you will get several offers of a good ‘ol American style beating.)

Behaviors will never deter us from going to the store. It will always be hard. One day little man Sandis is going to have to go to the store alone, and what will he do if he cannot? Sandis needs to be able to learn to shop on his own, independently.

My child’s behavior in a store is not a reflection of me, nor is it a reflection of the efficacy of my parenting. He cannot currently act appropriately the entire time in a store, but with redirection, and a lot of practice he will learn. And when is the best time for him to learn? It seems quite the Catch 22 to not take my son to the store to learn how to act appropriately there because he cannot yet act appropriately the entire time he is at the store.
I firmly believe that as a parent it is not my job to control my children but to teach them. This may be hard to understand for the “Children should be seen (sometimes) but certainly not heard (ever)” generation, but it is more on target for positive growth than any other tactic.

Good People - Party Bias

2007-12-24T12:35:00.000-08:00

This past weekend, I have had the opportunity to hear some of the views of family members from a party that is, well, not "my" party.

Perhaps I disagreed with them. Perhaps I found some of their points interesting. What I left with, though, is not something on which to base further Republican and Democratic fisticuffs, but something else.

Good people are not confined to one party, or the other. Before all my reading Democrats get riled up (haha) about all the evil Republicans that abound, I remind you that despite the differing views between parties, the two parties NEED to talk (communicate, not just like talk at eachother) in order to create policy that is both effective and able to be signed into law.

I'm fairly certain that the party I associate with (not telling) is pretty clear to most by the less than "conservative" views I tend to have. I must say, though, that although my views may not be considered "conservative" I am not sure how recognizing that adequate health care for ALL not just an elite FEW can ever be perceived as "liberal".

I have many family members on the other side of the fence that I love. I have many family members on my side of the grass that I love as well. We have different politics, but in the end, we basically (I think) want to accomplish the same things for our loved ones. It is all about how we get there.

I encourage any of you (all of you) to jump the fence at some point this week and open up conversation (however limited, as long as it is a give and take) with someone on the other side, and lets get a "bipartisan" movement truly happening; first in communities. Perhaps then our "representatives" will follow suit.

In Response

2007-12-21T08:50:00.001-08:00

Christine-Megan had a great comment on my last post, so great that I had to dedicate an entire post to respond to it.

I agree that healthcare isn't nearly what it should be here and a lot of people get screwed, but I'm not sure what the solution is.
Healthcare as it is in the UK or Canada scares the crap out of me.
It's HARD to get a pump in the UK, and I like my pump.
I know people in Canada that bought their's out of pocket.

Why does it scare the crap out of you? Maybe it is news, but it can be fairly hard to get a pump in the United States as well. First of all, you must meet at least one of the following criteria in order to get a pump in the US: Be well-to-do or have pretty damn good insurance. If you are well-to-do then you can afford the co-pays & deductibles of your insurance to not only initiate pump therapy but also continue it. You also have the option of paying for a pump out of your own pocket if you are well-to-do and your insurance doesn’t feel that it is a medical necessity. If you aren’t well to do, then you can pay your percentages, co-pays and deductibles, and hope it doesn’t bankrupt you with your current insurance policy to continue pump therapy.

So who in the US doesn’t get the option at all? The un-insured and the under-insured. They can’t get a pump at all. The un-insured can’t afford to buy a pump out-of-pocket nor can they afford the supplies needed to maintain therapy. The under-insured, even if their insurance approves the purchase of a pump and covers part of the cost, still can’t afford their portion.

So I guess that it is easy to get a pump in the US if you meet certain class criteria (see above). If you don’t, sorry man, you are out of luck.

When I needed a neurology consult, I got one in 2 days here. I can often get into the doctor's office the next day if I need to. When I needed a CT scan, I got one that day.
My family in the UK has connections and they wait a LONG time to see a specialist.
When I was observing in the ICU there was a patient there who's family was paying out of pocket for him to be in the ICU here, because the one in Canada was full.
That scares me.

I find this interesting because the US of A has fewer doctors, fewer nurses, and fewer hospital beds per capita than the average country in the Organization for Economic Co-operation and Development.

(I stole the above reference from “Your Pharmacist May Hate You”. Hop on over and take a look at his blog.)

As they say- access, quality, affordability- pick any 2.

And the uninsured and underinsured of America have which of these? That’s right, none.

I’d love to share with you a personal story about a man I know, a man I know and love, who just so happens to be uninsured.

This man is a small business owner (we’re talking one man crew), and at the tender age of 35 he discovered (quite painfully) that he has a congenital defect of his urethra which over the course of his life caused his urethra to completely close.

In significant (excruciating) amounts of pain, this man went to visit the Emergency Room. Upon finding out that he had no insurance, they performed a uroscopy on this man under local anesthesia to widen and open his urethra. So basically, what they did (in laymen’s terms) is they put a long camera up his urethra (penis) while he was fully awake and somewhat anesthesized (thanks to fentanyl) and used rods to widen his urethra so it was no longer closed. Typically this type of procedure is done in an OR under general anesthesia, but why waste the time and money on someone who probably can’t pay for the expense in the first place?

This man wore a catheter for two weeks, and after this period followed up with a clinic in the hospital, where they informed him that if he had insurance (or once he had insurance) they would schedule surgery to correct the problem with his urethra. In the mean time, he would have to self-catheterize himself daily (with the same catheter no less) for at least two weeks to help assure that his urethra would stay open longer. They prescribed him some empiric antibiotics (levaquin) to help fight off certain infection for a period of two months and sent him off on his way.

Oh, and his bill? Over $10,000. He was billed over $10,000 for sub-par care that did not take into account his pain level (in the hospital nor at home) nor his capabilities to perform the tasks requested of him, tasks that are typically reserved for a home-health nurses. The care also did not correct his problem, and this problem is likely to (will) happen again when their temporary solution runs its course. And then? Another $10,000 bill this man cannot pay.

To this day approximately one year later, this man still has not had the surgery to repair his urethra, and fortunately, has not yet had another problem.

Is this the type of care we want for our loved ones (or ourselves?) should they not have health insurance? This is just one story, I’d love to hear more.

On Universal Health Care in the United States

2007-12-19T07:18:00.001-08:00

I am not quite sure how it happened, but somehow, the American Public has been brainwashed into believing that socialized healthcare is a “bad” thing.

You know what, I’m sure all that popular media is right. Socialized health care must be bad, especially in light of our current system and how remarkably well it works. We are most certainly on the right track. Socialized health care is clearly evil, and damnit, poor people really don’t DESERVE to be healthy anyhow.

Wait, not poor people. I mean, poor people qualify for Medicaid which in many states pays for just about EVERYTHING (I mean, everything unless you need something like a tooth filling or a pair of glasses that aren’t plastic taped together at the ends). So who exactly is it that we have decided don’t really DESERVE to be healthy?

That’s right. We’ve very clearly made our point in America on how we feel about the working poor, the working lower middle class, and the working middle class. We really don’t give a shit about them. If they get sick and can’t afford their co-pays, premiums, and deductibles that’s really too bad. They should have saved better. You know, taken advantage of that Health Savings Account we made available to them when we made their deductibles $2000.

You say their maximum out-of-pocket expenses are 1/3 of their income eh? That isn’t affordable? It is really all about budgeting. Perhaps they can’t really afford that cell phone. And maybe they really shouldn’t be driving that car. Plenty of public transportation around these parts. Maybe even they shouldn’t own a home, being of moderate means and unable to devote 1/3 of their income to health expenses. It is all about fiscal responsibility. My taxes shouldn’t pay for your health.

As American people who are touched by the injustice of the current health care system and how it DOES NOT WORK we need to SPEAK OUT about our needs and how they are not being met. Plenty of countries have made universal health a universal goal, with amazing results. Health care is not a “for-profit” endeavor, nor should it be. It is not ethical to approach it as such, and it is a burden on families and individuals as more and more of the inordinate costs of AMERICAN health care are pushed upon us.

Why are more people not outraged? Have we forgotten how to activate our anger rather than dispose of it in apathy?

The following site was brought to my attention recently. I am not sure if this is my answer to the health care situation in the United States but it is a start. And that is something.

I plan to speak at the Minnesota Legislature in Saint Paul in March about Health Care. I am going to do this, and in doing so I am depending on people (which means every single person who is affected by the shitty state of health care in the United States) to make their needs known as an echo of the story I have to tell to the legislators. My story is one story. But there are thousands.

We cannot be satisfied with band-aids. Health care should be, and needs to be, universal and affordable for people of all incomes and all health conditions. Health care must be transportable and must not be dependent on a job.

Remember, today, how to find your outrage. Focus this outrage and let’s make a difference that really freakin’ matters.

On Her Own

2007-12-17T12:25:00.001-08:00

Gracie is my independent peanut. Truly.

A couple of weeks ago the battery on Gracie’s One Touch Ultra 2 died. Me, the ever fiscally responsible one, determined that it would be cheaper for us to REPLACE her glucometer than to replace the batteries. Shoving her “old” glucometer aside for when purchasing batteries is cheaper than purchasing an entire new glucometer, we opened the joy that a new glucometer is.

It really wasn’t all that different, except for the fact that the new finger pokers are awful little, which just so happens to work fairly well for my awfully little Gracie. The end result of all of this? Gracie is now successfully checking her blood sugar by herself. She is four, so she still isn’t quite reading the numbers, but she is checking her blood sugar herself and bringing the meter to me to look at. Quite a crafty little girl she is. She took it upon herself to learn how to do this, and me being the ever-scrupulous warden of much-too-little time, figured this would be a great way for her to take more control of her diabetes and at the same time allot me a few extra moments whenever the time may be that she needs to check her blood sugar.

Fabulous really.

I’ve read of other parents feeling sad as their child takes on more independence in their diabetes care. I waited to feel sad, some mopiness, something. But I just didn’t feel that. I have been living with diabetes for over 16 years, and I know better than many that if Gracie is going to have success with her care it is going to be because of things SHE does. I hope that I can lead by example, and I hope I can light a fire under her to want to invest the kind of time, energy, and emotion that diabetes requires for management, but in the end, it is ALL ON HER.

I understand she is four. She doesn’t have to do all of this yet. Yes, she is four, and my heart has broken a thousand times because of her diabetes diagnosis. But, imagine what she will be doing independently with her diabetes care when she is eight? She is four, and she is fabulous, and she is starting to take ownership of her diabetes care. And that is just awesome.

2008 – New Arrivals

2007-12-14T06:01:00.000-08:00

This is the time of year that not only are most of us in the midst of some sort of Christmas (Holiday?) consumer frenzy, but we are also anticipating a change that the new year often brings. What is this change? Annual Health Benefit changes, that’s what.

This in and of itself is enough to bring most individuals with chronic conditions (or family members with chronic conditions) to their knees consumed with stress. Changes that employers make to group plans are typically not favorable. Here are some examples of “positive” cost-saving changes an employer may make:

1. Increase deductibles (You know, from something like $500 to $850)
2. Switch all health plans to high-deductible consumer-driven plans (Suddenly your deductible becomes $1500 - $2000 from the $500 it was the year before)
3. Increase specialist co-pays (From something like $20 a visit to something like $40 a visit)
4. Increase the percentages YOU pay (last year you were on a 90/10, this year it is an 80/20)
5. Force you to buy all maintenance meds from a mail-order pharmacy AND increase your prescription co-pays AND decrease your formulary (which seriously, it isn’t like that generic co-pay applies to ANYTHING I would need for my diabetes)
6. Decrease the amount of annual coverage allowed for DME (Durable Medical Equipment)
7. Increase the maximum out-of-pocket allowed OR decrease what is an “approved” out-of-pocket expense.
8. And last but least satisfying for most employers (it seems employers want to be a bit sneakier in how they bankrupt you with health expenses, premiums are much too obvious!) raise premiums!

These are just a few of the “positive” life-altering changes our employers make every year in regards to our health care which has individuals scrambling trying to figure out how exactly they are going to make it another year, with the rules changing once again. Fun stuff.

So what did my employer do?

Haha. Funny that you ask. My employer was “bought” and “integrated” and as a result, we have “adopted” our “new company’s” health plan which just so happens to be a choice of the following:
High Deductible Health Plan, 80/20
Consumer Driven Health Plan ($1375 Employer paid followed by $1125 Member Responsibility (a huge delayed deductible) followed by 80/20)
Some Really Shitty PPO 80/20 with like 80 dollar RX co-pays and 40 dollar co-pays for everything else that don’t count for out of pocket expenses

Ever wake up one day and wonder what the F*** happened? Ya, sometimes I feel like that.

So I chose the consumer driven health plan, out of desperation really. The PPO was seriously so shitty I computed about $8000 in out of pocket expenses. I figured there was no freakin way I could afford the “shitty” coverage it offered on some sort of “Gold Standard” pretense. What-the-F***-ever. How this consumer driven health plan works is that your first $1375 in medical expenses is completely covered 100%, followed by a $1125 member responsibility (one month’s worth of test strips for Gracie & myself), followed by 80/20 coverage for everything (including RX’s) and no co-pays. There is a maximum $4500 out of pocket on this plan. Fiscally, this plan was the most responsible. I’m bracing for a tough year, but I’m crossing my fingers things will all work out (It just has to).

So on the flip side, I do a little research, and this CDHC thing does have its perks. For one, continuous glucose monitoring is an approved DME expense and does not even require prior authorization. So you know what? Jan 2, 2008 I am going to buy myself a REALTIME monitoring system and I am on my way with continuous glucose monitoring. Even better, Medtronic will bill my insurance and I will pay 0% of cost because it will fall (and practically deplete) my first $1375.

So, I guess next year really is a new year. It doesn’t mean I’m all that happy about the health insurance situation, but I have managed to find the silver lining.

Last Night's Town Legislative Forum

2007-12-12T07:40:00.001-08:00

So yesterday evening was my big “day”. I had the opportunity to share “my story” with Minnesota state legislators, or more correctly “Gracie’s story” in regards to losing her secondary Medicaid coverage beginning January 2008 because our income will no longer qualify her for coverage.

Legislators in attendance were Larry Haws, Larry Hosch, Tarryl Clark, Steve Gottwalt, and Dan Severson. Other local elected officials that attended were Stearns County Commissioner Dewayne Mareck and Saint Cloud City Council member Bob Johnson.

You can read more about this town forum here.

The reporter of this article did not capture the message my story emphasized. I expressed the need to increase the income and asset standards for Medicaid so more people could qualify. Even with health coverage, I explained that because of chronic conditions in my family, we are forced into poverty to pay for these conditions and we are just barely over the 150% of poverty limit for Medicaid eligibility. I know that my story is not singular, but is just one of many stories like it. Families need the additional coverage and security that Medicaid allows, especially when their children have chronic health conditions. With the trend of higher co-pays, high premiums, and high deductibles, having commercial health insurance is less and less meaningful, especially for lower and middle income families.

After the forum, I was approached by several people to thank me for telling my story. I was also asked to tell my story at the capitol (Saint Paul, where all the MN state legislative “magic” happens) next year. Apparently there is a bill that has been written, but not passed, that will do just what my story emphasized the need for: Raise the income and asset limits for Medicaid eligibility.

I don’t know how often or how strongly I can emphasize the need for all of us to tell their story to legislators. Without the human perspective a personal story lends, legislation is cold and made without regard to the humans it affects. You better believe that your legislators are being inundated by powerful lobbying from corporations with the money to back their requests. But last night, from legislators, I heard over and over again how important the personal stories of their constituents are. If we do not tell our stories to them, if you do not share the victories and trials you face in social programs, how can our legislators truly make informed choices in their votes?

Sandis and Self-Advocacy

2007-12-11T07:47:00.001-08:00

Sandis has ideas about the services he is receiving in the school and the community. If something isn’t working well in school, he has an idea about why it isn’t going well. He may also have a solution. Sandis has thoughts and ideas and feelings about his life and all of his experiences and the people who work with Sandis need to make a conscious effort to find out what those thoughts, ideas, and feelings are. This will create a higher effectiveness when working with Sandis.

It sounds so simple. But how often when dealing with an issue with Sandis’s IEP have I asked Sandis what he thinks I should do? Not that often. Sadly.

So this time around, I decided to change that premise. I spent about an hour talking to Sandis about all sorts of things that we are going to talk about in the IEP meeting. I wrote down my questions, and more importantly I wrote down his answers word-for-word.

As a result of this communication with Sandis, the recipient of services, he and I came up with some pretty nifty ideas which are based on what he perceives his needs to be, not what professionals perceive his needs to be (although basically, he is spot-on). A few of these ideas are:
1. Offer gum, don’t just make it available, but offer it regularly. Sandis listens better with gum.
2. Remind Sandis to hurry up at lunch so he doesn’t lose valuable outside time.
3. Let Sandis take a “buddy” with him when he does his sensory diet.
4. Sandis has problems listening during math and paying attention because he already knows what they are going over. He isn’t being challenged in math, and needs more challenge to keep his attention.
5. Assign Sandis jobs in the classroom which will utilize his desire to be a helper and at the same time get him out of his desk and moving around the classroom.
6. Have Sandis help other students with reading.
7. Always have a helper for Sandis in music and gym because he really needs help in those classes and doesn’t like to get in trouble.

What is so cool about this is these ideas are a result of Sandis talking about his needs and his reasons for different behaviors. He was very up front about sometimes needing a helper, and he was also very up front about not liking being in trouble. He also emphasized over and over and over about how good of a helper he is. And ya know, it kind of does take a kid telling you “I don’t listen because I know it already” to realize that misbehavior in math has more to do with boredom than sensory over- or under-stimulation.

The lesson? Sometimes our most valuable resource in regards to making services in the community and at school work is the recipient of those services. I think the fancy word for this is person-centered-planning.

I'm Fairly Popular in These Parts

2007-12-10T05:12:00.000-08:00

And I tend to get a lot of letters published in the paper.

Check it out! There isn't as many comments this go around, but of course, I did get the complimentary crabasses to respond.

Is Health Care a Right or a Privilege Reserved for the Wealthy?

2007-12-07T06:08:00.001-08:00

Article 25.
(1) Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control.

This is pulled from the Universal Declaration of Human Rights, which was created in 1948.

On December 10, 1948 the General Assembly of the United Nations adopted and proclaimed the Universal Declaration of Human Rights the full text of which appears in the following pages. Following this historic act the Assembly called upon all Member countries to publicize the text of the Declaration and "to cause it to be disseminated, displayed, read and expounded principally in schools and other educational institutions, without distinction based on the political status of countries or territories."

I have a small booklet, which I received my first month at Partners, which has these very same rights printed in it. Why have we, as a nation, drifted away from distributing to our nation what at one point we agreed were fundamental rights of all people? Could it be, that perhaps, we don’t want people to know what their rights really are?

I understand this document is not the Constitution, and we as a nation are governed under the ideas and basic rights outlined in the Constitution. But at some point, more specifically, in 1948, our nation agreed also that the above rights were the basic rights of all people. The Universal Declaration of Human Rights was intended to be meaningful to all countries and in all societies. When did we lose our way in this regard?

I hope you take a few minutes out of your day to read this entire declaration.

On the DRA

2007-12-06T11:39:00.001-08:00

I took a walk on my treadmill yesterday, and meanwhile afforded myself the opportunity to read a report on the DRA.

No. Not the NRA. The DRA.

I’m sure you’ve heard mention of the DRA here and there, and I’m sure the mention had all sorts of positive connotations. DRA = Deficit Reduction Act.
In this time of war, reducing deficits caused by a less-than-thrifty-in-regards-to-war-giddy President (notice I still use a CAPITAL “P”) is understandably a hot topic. We’ve borrowed our children’s and grandchildren’s futures to fund this war on “something but we aren’t quite sure what” so it makes sense that in an attempt to remedy this we create ways to reduce this deficit one way or another.

One way or another.

Back on Topic. So I was reading this Congressional Study on the DRA and I started to sweat. Not necessarily from my aerobic walking pace but more from a gut-wrenching rising fear.

Ever hear of cost-sharing? How about cost-sharing in regards to health insurance? (Certainly a hot topic among Republicans who seem to assume that all poor people are irrefutably irresponsible with their funds as evidenced by our poverty!) So how would you figure on cost-sharing for health insurance in the Medicaid sphere? As in shoving additional expenses on our most impoverished and vulnerable citizens and breaking their bank account (or more accurately lack of bank account) all for the benefit of a savings in the “several billion dollars” area for the good ‘ol Federal G’.

That extra $3 co-pay for their prescription drug will go a long way to save the government money namely why? Because many will “opt out” of their prescription because they do not know (nor is it a priority to have it be known) that they “DON’T HAVE TO PAY” the co-pay to receive the prescription. If they do pay, they literally are only paying back a portion of the federal welfare they are already receiving because they are either poor or disabled. How fucked up is that? Nothing screams USA quite like welfare charge-backs!

Of course, if you are a Medicaid recipient and you are not under the age of 21 or pregnant (sorry guys), you know this cost-sharing is already in effect. Did you also know that future plans in the DRA would remove that “DON’T HAVE TO PAY” clause, meaning that providers can REFUSE service or medication if the patient does not have the $3 to pay the co-pay? Perhaps, you say, this is no big deal. What is $3? Really?

If you are a recipient of SSI, $3 is a portion of your $637 monthly income which is expected to pay for:
1. Housing
2. Utilities
3. Transportation
4. Clothing
5. Food (in some cases)
6. Anything else you require to live and function independently

Work your budget on $637 a month and THEN you will begin to realize the importance of that $3 and the ridiculousness and inhumanity that this imposes.

This doesn’t even begin to address how the DRA will really “get you where it hurts” when you are elderly. Don’t even think about the repercussions if you are elderly AND disabled.

I am going to see about scanning in this report and posting it up here for review by loyal readers who are in for some dry yet frightening reading.

Ever feel like someone has pulled the wool over your eyes?

I do.

Want to read the report I read? I found it online. Go here and read it for yourself.

YouTube

2007-12-04T10:55:00.001-08:00

Check out my youtube channel.

I hope you enjoy your peak into our lives!

Death & Legislation

2007-11-29T08:42:00.001-08:00

Yesterday was a day, and at the end of the day, I was thankful that I left my job WITH a job.

I have a couple of things I need to talk about today. The first is this: Recently a man was arrested for suspicion of drunk driving. The man refused a breathalyzer so he was arrested and put on a 48 hour hold in a detention center. The man was brain dead and unable to be revived the next day in his cell. The death is unusual, but there is more, which I think you will find interesting. This man had diabetes. When this man was detained police officials asked him if he would like to test his blood sugar, yet he declined. They did not pursue the matter further. Later the next day the man was found dead and the reason for death is untreated diabetes.

The uneducated person may say, “He declined to check his blood sugar, this is what he gets!” It is what he got, I suppose. But ask yourself this. If for whatever reason one day you are detained by officials and at the time of your detention, what you truly need is a hospitalization, would you rather “Get what is your due” or would you rather that the officials value your life enough to provide you with appropriate medical care? Is the sentence more important than an individual’s life?

The very fact that the police officials asked this man if he would like to check his blood sugar indicates that they knew of his diabetes. Individuals with diabetes know that ingestion of alcohol can cause severe and prolonged low blood sugars, which may make an individual unable to care for their needs. This in and of itself is life-threatening. Add to that, assuming the gentleman that died is a type 1 diabetic, he will not live very long without insulin and a full 24 hours without insulin could indeed be a death sentence. Another twist, sickening as it is, is this man’s mother had been in contact with detention facility officials asking them to treat this man’s diabetes. Is drunk driving really punishable by death? Apparently only for diabetics. I found this story in the printed Saint Cloud Times today. I was not able to find it online. If you find this story online, will you please send me the link?

The end result of this is that this detention facility, the main jail in Ramsey County (Saint Paul), will now have 24-hour medical care. Is this appropriate recompense? I really don’t know. What do you think? I think more appropriately there needs to be a protocol that is followed when any person with diabetes is admitted to the facility.

The last bit of news is that the Saint Cloud School District (#742) is having a town legislative forum on Tuesday December 4th at 6:30pm at Apollo High School. You better believe I am going to be there, and it just so happens that my Tuesday night is free next week. I’m afraid that if I don’t go, there won’t be any parents yelling about the importance of our special education supports. Cuts in special education are not appropriate by any means. Call me the guardian angel of Spec. Ed. Funds (this is me being grandiose).

Integration

2007-11-27T13:10:00.001-08:00

They say there will be a reduction in back office staff, “less than 30 people.” I assume that means 29 people. I can’t help but feel stuck in this endless loop of “Will I have a job tomorrow?”

Big business isn’t something I really feel comfortable with. I am not the neck-to-neck competitive sort. I believe in success, but I’ve always had trouble understanding why success equaled both a winner and a clear loser.

I may not have a job tomorrow. If I do, that means someone else lost their job. It is exactly 28 days until Christmas. Perhaps enough time to spend in a rehab, and perhaps enough time for an evil zombie disease to take over and subsequently eradicate most of humankind and in turn themselves (28 days later…) 28 days is not enough time to find the resources to pay a mortgage, car payment, insurance, put food on the table, and lastly cough up some Christmas presents for little (and bigger) ones.

Sometimes losing sucks. I understand that corporate (our new corporate) will have you believe that this is not losing, this is just change. They can even spin it (in however foreboding a manner) and call it “integration”. Because integration is good right?

I really hope I have a job tomorrow.

Upcoming Events and Fare For All

2007-11-26T09:21:00.000-08:00

These next few weeks are pretty full of new opportunities for me. The Parents of Children with Autism Support Group meets this Thursday, and it is my third meeting as co-facilitator. Partners in Policymaking weekend #3 begins this Friday. Next week Gracie begins her IEP evaluations. December 11th I will give my first testimony before legislators concerning Improving Health Care Coverage including Home Care and Therapy. Sandis has an IEP review team meeting the same day as my testimony. There is a lot going on, and I couldn’t be more pleased with the level of involvement I have.

Here is the official flyer for the Legislative Town Forum.

Finally, I found a great resource the other day while waiting in line to sign my kids up for Toys for Tots. Sometimes, you know, that happens. You find a great resource while thinking only of other things. This particular resource is not a resource only for the disabled community, but more a resource for all families. Please take a moment and check out Fare For All . This program is really stinkin’ cool.

Food is a universal need. The cost of food and the limiting factors associated with its cost, especially for working families who do not qualify for federal food assistance, or older adults on fixed incomes that qualify for very limited or no federal food assistance. My family is a working family. We spend approximately 400 dollars per month on food and toiletries (or more depending on the month). Fare For All distributes (for a price, but a hugely reduced price) FRESH fruits and vegetables as well as frozen meats. This program really addresses the highest need for food, because this is just the sort of food you CAN’T get at a food shelf (or most food shelves).

I am going to try this program out and I will share with you the types of food I receive. For $17, how can I afford NOT to?

Improving Health Care Coverage Including Home Care and Therapy

2007-11-24T12:40:00.000-08:00

I've been asked to testify at a town forum sponsored by ARC and UCP on December 11th in Saint Cloud. I will be talking about Health Care Coverage Including Home Care and Therapy. Districts 14 & 15 policymakers (Sate of MN House Of Rpresentatives) will be present and it will be to them that I will be stating my case. I've put up my first draft. What do you think?

Good evening. My name is Sarah Rittmann and I live in Saint Cloud with my two young children, Sandis and Gracie. I first want to thank all of you for the opportunity you have given me to share with you the need for improvements in health coverage including home health and therapy options.

My son Sandis is seven years old. Sandis LOVES video games, plays hockey in the local youth league, and is excellent at mathematics. My daughter Gracie is four years old. Gracie is persistent, vocal and organized in all of her undertakings. I can understand that it may be hard to imagine a four year old being all of these things, but I also understand that you have not likely had the opportunity to meet my daughter! One thing that my two children have in common, despite their differences, is they both have disabilities and require varying levels of care to help them achieve the same level of independence that other children their age have. Gracie has cerebral palsy and type 1 diabetes and Sandis has an autism spectrum disorder.

My daughter has been involved in physical therapy and occupational therapy. My daughter’s disability is primarily physical so she also has many medical specialist appointments. Gracie, through the help of many interventions, has increased her skills and independence by a huge degree. Because of this she now only requires weekly occupational therapy, orthopedic supports, and her diabetes therapy regimen which consists of testing her blood approximately ten times per day as well as one injection of insulin per day.

My daughter receives Medicaid which is based on my income. In January of 2008 Gracie will lose her secondary Medicaid coverage as our income will no longer qualify her for this coverage. Usually an increase in income is met with happiness in a family. In my family, I have considered asking my job to decrease my pay. My daughter does not qualify for TEFRA coverage as she is not “disabled enough“ as has been determined by the State Medical Review Team. When my daughter loses her Medicaid coverage next year, our family will be forced to make some very difficult decisions regarding Gracie’s care and what therapies and interventions I will be able to continue. I do not believe it is ethical for families of children with type 1 diabetes worrying about how often they can afford to check their child’s blood sugars. I believe that Minnesota needs to take into account the needs of high medical-needs children with pre-existing conditions that may not qualify for a disability determination. Gracie deserves the increased mobility she gains from her orthopedic supplies, the best care possible for her diabetes, and she has a right to the therapies she receives that help increase her fine motor development. Families, also, have a right to these services for their children even if their commercial insurance will not cover them or they can not afford the copays and percentages they are required to pay for them. My daughter should not be denied her maintenance therapy which allows her to NOT be considered disabled simply because I cannot afford them and we are not poor enough to qualify for typical Medicaid

Sandis has a federal determination of disability so he receives Medicaid that is not based on my income. Sandis currently has occupational therapy twice per week. Sandis’s occupational therapy focuses on life skills. Sandis learns how to tie his shoes, how to act in public places, how to maintain focus on an activity he may not like, as well as many self-regulatory techniques that help him deal with frustrations and sensory input. Sandis also receives PCA services daily during the week that further helps him to complete all those things that you or I take for granted. Sandis learns how to clean his room, how to brush his teeth and bathe, how to handle frustrating situations, and how to sit at the table for dinner. All of these things that my son works on both in formal occupational therapy and with his PCA are fundamental to his independence now and also as he grows older.

Sandis’s personal care attendant is a crucial piece of his functional education. Sandis has been receiving PCA services since April of 2007 and in the past 8 months Sandis has had four different personal care attendants. He also was “between” personal care attendants for approximately 6 weeks of the first six months he was eligible for services. This means a few things for Sandis. The first thing it means is that during the time periods that Sandis is without a PCA, Sandis is denied his independence in his home routines. The second thing it means is that through the course of eight months, a child that is very bound to routine, has had to accept a new person approximately every other month into his personal routines and learn to incorporate this person into his life. There is a certain level of privacy and humanity that is lost when a child is submitted to a revolving door of personnel to aid him in things like bathing, toileting, eating, and behavioral regulation. There is also a certain level of trust that each PCA must achieve in order for Sandis to relax enough to allow them to truly help him in his routines.

I believe that it is important to not only ensure that children who need home therapy assistance are assessed and qualified for these benefits, but we also need to focus on and resolve the reasons behind the high-turnover in the direct support workers field. This high turnover intimately affects families, children, and individuals. Minnesota needs to continue to work towards providing optimum reimbursements for direct support services, and we also need to ensure that any increases in reimbursements are being reflected in the wages of the actual direct support workers.

Tagged!

2007-11-20T08:23:00.000-08:00

I’ve been tagged! This doesn’t happen all that often in my parts, so thanks for the thought Vivian!

The rules:
1. Link to the person’s blog who tagged you.
2. Post these rules on your blog.
3. List seven random and/or weird facts about yourself.
4. Tag seven random people at the end of your post. (I’m probably not going to do this. I have trouble NOT following rules, but I’m not big on tagging folk.)
5. Let each person know they've been tagged by leaving a comment on their blog. (please see above)

7 Things About me
1. I am a drug addict. I went to treatment in 2004 for fentanyl & benzodiazepine drug addiction. The experience gave me the peace and strength that has helped me move mountains since then for my family. Sometimes it takes being at the bottom to realize what it takes to get to the top, or even if you still want to get to the top.
2. I am a perfectionist and have trouble breaking the rules. I seriously get a gut ache thinking about lying.
3. My SO is named Bob. Just so you know 
4. I read. I read A.LOT. In October of 2006 we canned the cable, and I began a new reading career. We have no TV stations. We do have some DVDs though.
5. I am a firm believer that you are what you DO. Try tracking your time, all of your time, for a week. See if your values are reflected in what you are choosing to do each day. I learned that in treatment, and it changed my life and my perception of what I am capable of.
6. I can’t stand to have my feet touch eachother. Especially not at night. I need to wrap my feet up in blankets so they can’t physically touch, which in turn drives Bob right up the wall.
7. I am convinced that apathy is a contagious disease. I am also convinced that should you catch this contagion, you must work twice as hard as any other to rid yourself of its taint. But hey, that’s politics…..and seriously, politics doesn’t discriminate. Not if you have a good enough lawyer.

If you read this and you feel like sharing some seven things about you with your reader base, please do. Oh, and consider yourself tagged. But if you DO tag yourself from me, just send me a note, so I can read YOUR seven things.

THRIVE

2007-11-19T09:55:00.001-08:00

This evening I am attending a meeting for parents of young children for whom they have mental health and behavioral concerns. I have attached a flier that details what THRIVE is about and how it is intended to help families in my area.

My personal focus is not on early childhood, as my youngest is fast approaching no longer fitting in this category. But….You better believe that if I have an opportunity to effect the standards of care and assistance available to children and families I will be there….Raising my voice and my concerns.

I did it again :)

2007-11-19T04:58:00.001-08:00

http://www.sctimes.com/apps/pbcs.dll/article?AID=/20071119/OPINION/111190029/1006

My Diabetes in Review, and on My Front Page

2007-11-16T10:58:00.001-08:00

So take a moment to take a look at the small text excerpt I have inserted below my TuDiabetes video.

This is my attempt to bring my diabetes care more to the forefront of my mind even while primarily addressing disability advocacy issues everywhere else. I scrupulously track my blood sugars and calories and carbohydrate intake. I intend to record my blood sugar averages for the week, my high, my low, and my exercise minutes throughout the week and enter the information into this small sidebar.

I hope to illuminate my very humanity by this (My numbers will always be far from perfect) but also to keep my numbers, and their meanings, closer to the front of my mind. Every. Single. Day.

Please feel free to comment anytime on what you see!

I’m thinking about adding these things:
Average daily carb intake
Average daily calorie intake
Weight

What do you think?

See What Happens When I Stop Paying Attention?

2007-11-14T09:29:00.000-08:00

The Honorable (and Presidential, even) George Bush vetoes yet another bill(Labor-HHS-Ed bill (H.R. 3043)) that would have been beneficial for children and adults with disabilities. I’m beginning to think that all this vetoing power is going to the man’s head. What makes it even sicker is despite constituents urging their legislators to vote to override these vetoes (read SCHIP) there are a remaining few who refuse to cross party lines and stick on the buddy fence with the President. I’m not exactly sure what this is accomplishing for these politicians personally, but in regards to passing meaningful bills that are supported by their constituents they are failing miserably.
This bill funds a vast array of programs that are designed to meet the disabled community’s needs. To name a few (including which programs in the bill saw an increase from President Bush’s recommendations):

IDEA (Local Grants, Part B, and Part C Increased)
Vocational Rehab (Increase)
Supported Employment (Completely cut in President Bush’s budget, kept at previous years funding in bill)
Assistive Technology Programs (Increase)
Office of Disability Employment Policy (Increase)
Work Incentives Grants (Completely cut in President Bush’s budget, reduced from previous year in bill)
Administrative Services for Social Security Administration (Increase)
State Grants for Developmental Disability Councils (Increase)
Protection and Advocacy Systems (Increase)
University Centers for Excellence in Developmental Disabilities (Increase)

This is a short view of what the House & Senate agreed upon in this bill. Keep in mind that these increases are increases over the President’s proposed bill, not necessarily increases from last year’s funding. If you want more info, go here.

I find it appalling that the President vetoes a bill because the appropriations are different from what he proposed, and more correctly MORE than he proposed. Did you notice he intended to complete CUT the supported employment and work incentives grants? What sort of support is that for full inclusion of disabled adults in the community? Apparently President Bush doesn’t really feel working is appropriate for disabled adults?

Please, make your voice heard and email or call your representative in the House to vote to override this veto, TODAY. If you aren’t sure who your representative is, or how to get in touch with them, go here for some direction.

We all have a responsibility to make our voice and our community heard. If we don’t SPEAK UP, who will?

November is Diabetes Awareness Month

2007-11-13T11:05:00.001-08:00

And on that note, I’d love to spread some awareness, so let’s start with some basic facts that are contrary to some common myths associated with diabetes.
1. Diabetes is not caused by eating too much sugar.
2. You CAN eat sugar if you have diabetes.
3. Type 1 diabetes is managed very differently in many ways than type 2 diabetes.
4. Diabetes is not caused by being overweight. If that were the cause, all overweight people would have diabetes. The incidence of type 2 diabetes is , however, higher in patients who are overweight.
5. A person with diabetes can have very healthy babies (and many have).
6. You cannot manage type 1 diabetes with diet alone. Ever.
7. There is no set or specific “diabetic diet.” A diet for any person with diabetes is determined in tandem by the person with diabetes and their doctor.
8. If you have type 2 diabetes and are overweight, you do not “lose” your diabetes if you lose weight.

I don’t often focus on diabetes awareness on this blog. And honestly, I can’t say that my “averages” are all that hot this past month or two. My last a1c was 7.5 and my average for blood sugars last week was 183.5 (OUCH!) I’m seeing more and more highs, and feeling more and more complacent about it. I am feeling overwhelmed.

I think these periods are common for most people with diabetes. Managing diabetes is not done once every 90 days with your endocrinologist. Diabetes management is 24 hours a day, 7 days a week, with no breaks ever, not even when you are asleep. The weight of diabetes management at times is intolerable. It is at these times when control slips, and good habits lapse.

Outside interference, as I like to call it, is often not helpful in these instances. Should a coworker gently probe about my “ability” to eat a snack size chocolate bar, I will more than likely in some sort of rebuff eat three. I can eat chocolate, and outside opinions in regards to my very personal diabetes management are generally not welcome. Would you chide my daughter for running around for an hour without her theratogs and braces? No. Her care. Our care. Not yours. I was diagnosed early enough in life that at some point your taxes (and mine, thank you) will be paying to correct complications. That is not so much a failure on my part rather than a failure of my endocrine system in general at a very young age combined with the failure of our national health system (nothing much natural about it) discouraging appropriate care for young people with type 1 diabetes.

Type 1 diabetes is hard work, and it is work that I am very much engaged in. This is my health, it is important to me, and I understand that here shortly I will be out of this slump. It is important, though, to realize and understand that an occasional slump in rigidity of care may be necessary for emotional health. The very scope of care that our disease requires is exhausting, and there are bound to be hills and valleys in the timeline of care throughout our life.

November is diabetes awareness month and I am sharing with the world, today, that it is okay to sometimes not be in that good of control. Sometimes this is okay. Not forever, and not ongoing, but sometimes. Afterwards we have the responsibility to get back on track, and as long as we never lose sight of that, we are okay. We have to give ourselves that bye, every once in a while.

To every person (adult, child, teenager) struggling with diabetes today, please take it to heart that you are struggling as evidence that you are working for a better result.

A Different Focus

2007-11-09T13:10:00.001-08:00

I wrote two lists of adjectives that reference my pumpkin and peanut. Can you tell which list is for which child?

Energetic, Amazing, Smiling, Fun, Spirited, Technical, Logical, Circuited, Literal, Sly

Persistent, Amazing, Shining, Bouncy, Opinionated, Vocal, Caring, Loves Animals, Imaginative, Direct

My children are the recipients of a ton of regulated programming that is individually tailored to their needs and offered by the school district, county, and private health care providers. All of this programming focuses on their deficits.

I took the time and energy today to focus only on Sandis' & Gracie’s attributes. These are the attributes that make my children the individuals that they are. I hope to add to this list as they grow older. I also intend to share this list with them, and often. Because really, how could a technical, logical, sly, smiling, and energetic person have any problem not realizing his/her dreams? On that same note I foresee that an imaginative, opinionated, caring, direct, and persistent individual can create a lot of positive change in whatever endeavor he/she chooses.

Lastly, I would like to point out that both children received the adjective “amazing” in their list. I unintentionally chose this word for both children while attempting to choose different words for each child.

Amazing how that works eh?

SEAC Appointee Reporting

2007-11-07T08:56:00.000-08:00

Please take a moment to say hello to me, the newest appointed member of the District 742 Special Education Advisory Council.

I know this may come as a surprise, but although I am quite vocal at times on this blog, oftentimes my doings I keep in secret. In this way, I won’t be embarrassed if I am turned down for an advocacy position I desired enough to warble my way through an application for.

In these past few months I have taken on a sizable amount of additional responsibility in regards to disability advocacy in the community. It all began with my acceptance into Partners in Policymaking. A few months later I was given the opportunity to help facilitate the local Parents of Children with Autism Support Group which is sponsored by ARC. Now included in my fold of activities is the SEAC.

In this past year since Sandis’s autism diagnosis, Gracie’s diabetes diagnosis, and the ensuing chaos as a result of these diagnoses, there have been many individuals in the community that ensured that my family was not lost in the shuffle. The sheer amount of paperwork involved in ensuring that your child has services is overwhelming at best. I realized very early on that I could not have garnered the services and supports my family has were it not for these individuals.

At some point, our lives, my family, we fell into a groove. We still have our days. There is still chaos. But within that chaos there is an order, and also, there is a peace as through our journey in the past year we have learned so much about our rights and how they apply to our lives in the community. This is no small feat.

At what point should I acquiesce and idly warm my seat as my family has been provided for appropriately? I’ve come to the conclusion that there is no time for warming my seat. The reason is this: My family’s successes are fueled by the hard work and advocacy of all the families before me. Where other families in the past had no opportunities for community based life and services that my family does. It is only through their exhaustive work that we have what we have. I have a social responsibility to continue this work so families after mine will not have to work as hard as I have for appropriate services, inclusion, and bureaucratic accountability.

Apathy is not appropriate. If you have the inclination to complain about the current set of societal circumstances, then you have the initial background necessary to facilitate positive change in your community. It takes time, and everyone is Busy. Yet in the time you take you demonstrate to your children, you acquaintances, and friends that community involvement is essential for any community to thrive.

This is Freakin' Fabulous!

2007-11-04T15:46:00.001-08:00

I love this, how he wipes out three kids at the very end......

And lastly, Sandis movin' the puck.

And yes, it really is that loud in the rink!

It's All About Hockey, Baby!

2007-11-03T12:40:00.000-07:00

So we have ventured forward into the alternate reality I'll call hockey from here on out. I'm not certain how familiar ya'll are with this reality, so I'll help you out as best as possible. I've talked about wanting to get Sandis enrolled in hockey before, so the response from the SCYHA that he was approved for a scholarship was awesome indeed. From there we ventured out into hockey, and first step is? Obtain hockey gear. We bought a new pair of skates (new to us anyhow) that fit and acquired all that hockey gear.

All.That.Hockey.Gear. This presented a slight problem. Sandis barely tolerated trying the helmet on, and our hockey situation quickly devolved into a squeaking, screaming, sirening Sandis the longer the helmet stayed affixed upon his head. I devised a plan.....Desensitize the boy to the gear (the helmet, all that velcro, and poking) by foricng him to wear the gear for an hour a night.. We successfully accomplished this by none other than bribery...Video games!

Imagine my surprise when after all that bribery and malcontent on mister Sandis's part, I discover after affixing the mouth guard on the helmet, that herein lies the solution. Sandis sets the mouthguard in his mouth and there goes all the complaints. It is like a chewy tube that forms to the shape of your mouth. Fabulous. The people that created these things were smart buggers indeed.

So this afternoon we ventured out onto the ice. Skating is HARD.

And then, sometimes THEY make it HARDER.

But you know what, after a while things started to come together.

I watched in shock, at times...Is that my boy WAITING IN LINE?

Here is proof of the benefits of inclusion. Sandis is doing what all the other kids are doing. He is just another one of the boys.

There was even a few opportunities for one-one-one coaching.

At the end of the day, Sandis and Hockey, well they were two peas in a pod.

Inappropriate No's

2007-11-02T08:28:00.001-07:00

I’m not exactly sure what it is with District 742 and Stearns County, but I sure am tired of being told no before any evaluations are actually done that justify that no.

I have requested a waiver assessment for Sandis. Why? The waiver would be beneficial for our family and help secure services and supplies for my guy more readily than what our current system of support does. The waiver would help to pay for not only his PCA services, but also Occupational Therapy supplies for his home environment, alarms for our windows and doors (ever the escape artist he is!), and also help to replace household items he has aided on their journey to heaven (figuratively speaking). This stuff gets expensive, and there are times when waiting for that Family Support Grant to be approved (or denied) we lose our opportunity to offer him the positive help he needs in the time frame he needs it. Requests go something like this.

Me: I’d like to apply for waivered services for my son.
County: I don’t believe he’ll qualify.
Me: I’d still like to apply.
County: Even if he is approved he’ll just go on a waiting list. And even then, he’ll never get to the top of the list because persons more severely affected will always go to the top of the list before him.
Me: Are you telling me I can’t apply for a waiver for my son?
County: I wouldn’t say that. I just don’t see the need.
Me: I’d like to apply for waivered services.
County: Let me talk to my supervisor about this and I’ll have him get back to you.

And so it goes. It pisses me off to no freaking end. How can you say he won’t qualify if you aren’t evaluating him? Just this past April I was advised not to apply for PCA services because he wouldn’t qualify. I persisted, and I insisted, on PCA evaluations. And guess what? He not only qualified he was given 14 hours of PCA services per week. Please, Stearns County, give me the reason that you would tell me he doesn’t qualify when you can’t possibly determine that without an evaluation.

On to scenario two. I have requested special education evaluations for Miss Gracie. Gracie is doing awesome in district preschool. She is there 3 days a week for 2-1/2 hours a session. She isn’t doing so hot in her private day care, which is also a Minnesota accredited preschool program. So we’ve implemented some sensory accommodations into this program and it has helped magnificently. She spends the majority of her school days in this program, so it makes sense that if she has problems it will be where she is the most. Next year Gracie starts kindergarten, but the accommodations she is receiving at her day care you don’t get in public schools. Well, you don’t get those type of accommodations without an IEP. So here is how this one goes:
Me: I’d like to request special education evaluations for my daughter and here is why:_____.
School District: We will bring that concern up with our team and they will decide whether or not evaluations are appropriate.
Me: My concern is just as valid as any other professionals’ concern. I’d like her to have special education evaluations.
School District: Gracie is doing wonderfully, with no problems, in her district preschool class. That shows she is not educationally affected. She more than likely will not receive special education evaluations.
Me: Gracie has had documented problems in more than one area, both at home and at her day care. Her day care is an accredited Minnesota preschool, is a learning environment, and is where she spends the majority of her day. She is educationally affected and I expect her to have evaluations.
School District: I’ll have someone follow up with you regarding whether or not she will receive evaluations after our team meets in regards to this.
Me: When will that be? I’ll call you on that day. (Monday)
So here is the deal, I really want to know where the hell these people (professionals?) get off denying my children their basic rights to services and accommodations because they “feel” like they won’t qualify. Evaluations are not based on feelings, they are based on actual EVALUATIONS.

So please, Stearns County & District 742, stop telling me your feelings. I really don’t care. I don’t have the time, or the patience, to discuss your personal feelings in this regard. Make the appropriate referrals, and let’s start the appropriate evaluations, and THEN we’ll talk about whether or not my children “qualify”.
Until then? Kindly hold your tongue.

Quite possibly I am obsessive.

2007-11-01T09:12:00.001-07:00

Obssessive. Obssessive.

I’ve been listening to the same set of White Stripes songs all morning. That is, since 7am this morning. That is four hours of non-stop Jack obsession. I fully intend to continue this, breaking only shortly for lunch, until 3:30pm.

Should I ever have another child (doubtful) I shall name this child Jack, irrespective of gender.

I wonder, perhaps, if I am losing my mind. I wonder exactly where my mind has been. I wonder how or why it is quite so often difficult to find the words I am seeking or to focus the jumble of activity that is in my mind. Focus beyond the jumble, for it is easy to focus within. I wonder how it is that vocabulary is a fancy of mine, while spoken communication seems to be such a garble.

I find a rhythm in Jack’s works that precludes everything. A rhythm that is quite possibly in sync with my own personal rhythms. Sound odd? Perhaps, but sometimes I get the impression others feel that way about the Beetles, Grateful Dead, or even Cat Stevens (I know, weird right?)

Maybe it’s whatever in my head that’s distracting me. But if I could find emotion to stimulate devotion, well then you see…..(stolen words)

Sandis the Hockey Man

2007-10-29T20:00:00.000-07:00

We've gone and done it. We signed the little man up for hockey. We start next weekend.

I have been arranging a para to assist Sandis on the ice. I think he will be pretty good out there except during practise when he is waiting or needs to be patient, or during games when he is on the bench.

I have been working with ARISE to find him a para to help him with hockey, and well, they aren't necessarily the most hopeful. Apparently the Youth Hockey Association is not the easiest to work with in regards to paras.

It's cool though, I'm ready for whatever I have to do to get him out there with all the typical kids for a typical hockey experience.

We try on hockey gear this Thursday. We bought the skates this past Sunday. My son is the Black Tack little guy.

I'm so excited, I just can't even express...! I mean, really, do you EVER wonder where the name Sandis came from?

The Journey Within

2007-10-25T07:19:00.001-07:00

Dear Kathie,
I had to come and see your website! I am in class 25 of Partners in Policymaking in Minnesota this year. In our first month's resource packet we were literally inundated (in a good way!) with your articles. As I made my way through your various articles, everything you said made more and more sense. I am attending Partners as a parent of a child with a developmental disability. In one of your articles you mentioned an adult named Howard who broke into tears during a Partners training after he told you about how his father always introduced him as "retarded". After reading this tears sprung into my own eyes. I can't say how many times I have flippantly told others, in front of my son, my son's diagnosis. You have opened my eyes in more ways than one.

I later had a short conversation with my son and apologized for any time I ever discussed his diagnosis and acted like he wasn't around. My son is 7, and do you know what he said? He said: "It's okay mom, but just don't do it anymore, ok?" And then he cried

I honestly never realized I was hurting him.

Thank you so much for opening my eyes!

I am so excited for the rest of Partners. You ve mentioned in a few places on your website how Partners changed your life. I can already say it has changed mine.

The pivotal aspect of this experience was not writing the email to Kathie, or even the realizations I had as I read her articles. It was the exchange I later shared with Sandis. I can’t easily explain the sinking feeling I felt when, after apologizing to my son, I realized he knew exactly what I was apologizing for and that it had been a source of hurt for him time and again. I see my children cry often, but I never want those tears to be a result of my own callousness.

This entire experience gave back to my son the respect and humanity I had unintentionally taken away from him.

I spend so much time attempting to change others’ views so my son is regarded as an equal with other children and as deserving of inclusion and respect as any other child. I have learned that this change begins with me and my own actions. Hopefully this will encourage others to follow suit.

No Bite

2007-10-21T10:57:00.001-07:00

My house is hilarious. And admidst all the giggles, we contemplate losing our minds.

Have you ever heard of No Bite?

This has been our family solution to thumb-sucking. Amazingly enough, it has been remarkably effective.

The drawback? (and there always is one....)

Removing the oral sensory satisfaction of the thumb has invoked a new oral sensory past-time. Namely trilling. Of course there is the occasional filler sound, but for the most part trilling.

Constant.Mind-bending.Eye-straining.Head-Ringing.Trilling.

So yes, we will continue to use the No Bite to help erase the thumb-sucking. The dentist mentioned something along the lines of decreased mastication and surgery should we not get rid of this rueful habit.

But....

What about all the trills?

On Apathy

2007-10-18T18:18:00.000-07:00

The House failed to override President Bush's veto, and I imagine Mr. President in some surly swagger. Why surly? Surly for the very fact that our democratic house tried to override his "very relevant" veto-ing power in the first place.

I guess there is one key thing to remember in what most certainly feels like a failure. One No often time just isn't at the peak of its current life cylce. Perhaps we need a few more no's before we get that resounding yes we know that our children and families deserve.

I've talked often of the joys of persistence and I've noted how eventually, oftentimes, that no turns into a yes. This is an especially important concept as we are bound to feel phased out and unimportant in the political scheme of things. But things change. Decisions that were once a no oftentimes gradate into a yes.

The tricky part is ascertaining how to mold those no's and garner a yes.

This is my feeling on politics: Your representatives have no way of knowing your story. It is unrealistic to assume that someone else has told your story. That means that your representatives are voting on laws that will affect YOU yet they have no true concept of what effect their vote will truly have.

This is where you come in. You come in to tell your story. You take the time to learn about the bills that affect you, your children, your family, your friends. And then you send an email, write a letter, and make phone calls and you tell your story. It is our stories that, over time, have the propensity to fuel the most positive change. Why is that?

Our stories infuse political bills with humanity. Humanity makes these bills powerful, and sometimes, our humanity can change the course our very human politicians will take. Their yay or their nay.

One gift I have taken thus far from Partners in Policymaking is I seem to have missplaced my apathy.

Thank God for that.

And may we all find a niche in which to permanently dispose of this acrid state of personality.

SCHIP Vote Today!

2007-10-18T05:24:00.000-07:00

Please, call your House Representative and urge them to override President Bush's veto of the SCHIP Bill. Go here if you aren't sure who or where to call to get this done. Hell, they'll even give you a script to read to them there.

Why is this important to me?

My family is important to me, my Gracie is important to me, and should this bill not pass my peanut will lose her Medicaid next year at our re-evaluation. We have private health insurance and secondary Medicaid for Gracie. Due to the fact that she is not considered disabled under federal standards, her Medicaid eligibility is determined by my income. Last year I was $200 dollars under the annual income cap for my family size. My annual 3% will put us up and over this cap. What will that mean for miss Gracie? We will no longer be able to afford her Occupational and Physical therapy. We have private insurance, but seriously, our percentages and copays for therapy would be more than my income could handle (something like $90 a week?).

It really makes you wonder about the current available healthcare system in the United States. Even the people that HAVE health insurance can't afford appropriate care. That's pretty sad.

Outside of my family, this affects so many families. Lower income families, or middle-income families, with no available and affordable health insurance. How is this justifiable? And why is it distorted into some kind of "socialist" movement when we try to insure the health and vitality of our future, our children? It makes no sense to me.

I'm hoping that the House restores my hope in America today. I guess my hopes aren't all that high though.

If you want some more facts, go here.

A Response to Michele Bachmann's Form Letter Regarding SCHIPS Bill

2007-10-16T05:47:00.000-07:00

“Thank you for contacting me about the State Children's Health Insurance Program (SCHIP). I appreciate hearing from you on this important issue. Unfortunately, the program has become politicized, and Congress recently passed legislation to expand SCHIP coverage beyond children, beyond U.S. citizens, and beyond those who are truly in need, and that is where the problem lies.”

First of all, I would imagine that a program that must be politically approved is open to some measures of politicization. Assuming that politicization is bad, you are just as guilty as anyone else of politicizing this program.

SCHIP coverage moves beyond US citizens in the form of Emergency Medicaid. If you are not familiar with this program, I will help to enlighten you. Emergency Medicaid is created not to assist illegal immigrants (or rather those who are not US citizens) but rather to act as a safety net to hospitals that provide care to illegal immigrants in emergency situations. Hospitals cannot send an emergency patient away because they are not citizens. This is unethical, inhumane, and even were it ethical and humane it is not easily practiced (How exactly do you verify a patient is a citizen while said patient is having a heart attack?) It is near impossible to track these patients, or set any consequences for not paying the bill for this service. Emergency Medicaid was set up to give reimbursement to hospitals for what they would never be paid for as a result of following law as well as ethical standards. People who are not US citizens qualify only for Emergency Medicaid in “emergency” situations (i.e. traumas).

Adults who are covered under the SCHIP program are covered because said state has received a waiver from the federal government allowing them to do so. How does a state receive a waiver to cover adults, you ask? They receive a waiver to cover adults when they prove they are covering a large percentage of children who are eligible for the SCHIP program, and in doing so have money leftover with which the federal government allows that state to cover adults. In fact, you should know this Ms. Bachman as one state that receives this type of waiver is Minnesota! States that are under-serving their eligible children would NEVER qualify for this type of waiver to cover adults.

Another aspect of this bill is the removal of requirement to provide proof-of-citizenship to receive SCHIP benefits. In Wisconsin alone, there were 21,000 children whose SCHIP coverage was cancelled due to inability to provide proof-of citizenship (ie. birth certificate). Many of these children were known to be US citizens but did not provide proof. Eligible children are ending up not having the health insurance they qualify for because of a technicality. This provision attempts to accommodate for that sad fact.

“According to the U.S. Census Bureau, several million SCHIP-eligible children are still uninsured. Surely, children in need should have the health insurance promised to them before expanding SCHIP further up the income ladder or using more of the program's limited resources for adults.”

Each state should be held accountable for programs designed to help inform the public about the SCHIP program. Not all states have informed the public about SCHIP as well as Minnesota (again your state!) Perhaps they could take some cues from Minnesota to work harder to cover their children. Although, I do wonder how states not getting the word out to eligible children means that this SCHIP bill should not be approved. As stated previously (and you should know and understand this!) states that are not adequately insuring their eligible children would not be eligible for federal waivers to insure adults!

“Here's my idea. Let's cover the kids first. Let's focus on children in need without access to health insurance, and fund SCHIP as it was meant to be. I've publicly supported legislation that would accomplish these goals and keep SCHIP moving forward to help those it was intended to help. “

That is the goal of the current SCHIP bill!

“But some want to move SCHIP in the wrong direction. Under the bill passed by Congress and vetoed by the President, SCHIP dollars could be used to cover childless adults and more affluent families - in some cases, households earning up to $83,000 per year. It also changes current law to make it easier for illegal immigrants to get SCHIP funds.”

I’ve heard that $83,000 word flung far and wide like it actually affects more than one state. Ya, that’s right. That $83,000 cap is obtained by a waiver in New York State. Which makes sense in NYC. $83,000 in New York City is nothing like $83,000 in Minneapolis. In the state of Minnesota, the actual income limit would be just under $63,000 for a family of four. As far as the illegal immigrants and SCHIP funds comment goes, please see above. I would like to point out, though, that your misleading references in regards to how money in SCHIP is used are tiring.

“Rather than focusing on low-income, uninsured children, a Congressional Budget Office (CBO) study shows that more than 77 percent of children affected by this expansion already have personal, private health insurance. In other words, the bill creates an incentive that pushes kids out of private insurance into a government-run program.”

Have you ever heard of Medicaid fraud? I’ll help you out on this one. In the state of Minnesota, if you have affordable private health insurance (determined by employer paying at least 50% of premiums) it is ILLEGAL and FRAUDULENT and punishable by FINES and JAIL TIME should you drop your private affordable health insurance in lieu of the public SCHIP. There is more to this though. Did you know that the state of MN actually contracts with private health insurance companies to provide SCHIP coverage? That’s right. That means that the children and adults in the state of MN covered by SCHIP as a primary health insurance are covered by a private health insurance that is contracted by the state of MN.

So…………..Government run? Not exactly….Government paid for to promote our garish capitalist state? Absolutely.

“Worse, this legislation makes SCHIP financially unstable. In order to appear fiscally sound, it gives children health insurance for 5 years, and then it cuts SCHIP funding by nearly 80 percent - a classic bait and switch that will cause millions of American children to lose their health coverage.”

Well, this may be the one drawback I MAY agree with.

“According to the CBO, the bill will lead to only 800,000 currently eligible-but-unenrolled children being enrolled in SCHIP by 2012. The sad fact is that it would be cheaper to give each of these kids $72,000 than it would be to enact this bill, and it would probably show healthier results.”

I doubt that is the fact, but since you aren’t going to vote yes on this bill anyhow, where’s my 72 grand?

“Rather than playing politics with children's healthcare or scoring political points with radio and TV ads, I believe Congress should show the American people that we are here to solve problems, and I will continue encouraging House leaders to do the right thing by bringing up an SCHIP bill we can all support.”

Oh, do you mean that SCHIP bill that would end up cutting the number of eligible children, remove all eligibility for adult waivers (even if the kids in your state are covered to an overwhelming degree?), shut off Medicaid reimbursement for transportation services to disabled children, and would offer a “tax credit” to people who purchase affordable private health insurance? Oh, and just to cue you in, SCHIP is available to people who don’t have affordable health insurance available so they wouldn’t get that tax credit. Another clue concerning that? Most families on SCHIPS don’t make enough money to even PAY federal income tax, so what good is a tax credit on tax you don’t pay? No good, that’s how.

”Once again, thank you for contacting me. Please keep in touch.
Sincerely,
Michele Bachmann
Member of Congress”

Thanks for your support. I appreciate all the “politicization” you had to offer.

Hockey

2007-10-15T06:25:00.000-07:00

I applied for a financial aid scholarship for the Saint Cloud Youth Hockey Association.

And why is that?

I was hoping that mister Sandis would be able to play hockey this year. He is seven, he has unbelievable amounts of expendable energy, and he has an infatuation with the sport that is “the sport” in our household. Seriously. If we had TV channels we might even watch hockey. Even better, if we got the paper, we would think about checking the scores.

While browsing through the SCYHA website, I found that they also offer “Special” hockey which is targeted for youth with developmental disabilities. I pondered this, if only for a moment, and its pertinence to my family. I could have requested that Sandis be placed in the special hockey program. I didn’t. This is why:

Sandis is normal. Disability is a normal part of the human experience. Not every human is disabled, but neither is every human a man, or a woman. Outside of that, Sandis’s best opportunity to learn how to function amongst his typical peers is by actually spending time with his typical peers. As an aside, I’m hoping that if we are approved for this financial aid scholarship, that we can replace some OT (you know, the pushing, pulling, squishing sensory marathon that is Occupational Therapy) with a more natural sensory experience like hockey.

So cross your fingers for us…..Because we may just be a stick totin’, hockey skatin’ family in the next few months.

240

2007-10-12T18:09:00.000-07:00

Gracie's most recent blood sugar was 240. I know I've been worried before. This time it feels different. It might be nothing. It might go down just like every other time.

I'm just worried because at 3:30pm she was 169, then at 5pm she was 194, and now at 8 she is 240.

It is hard to not notice that those bloodsugars are not trending down in any sense of the word down. In fact, they are trending most certainly up.

So I asked for pee in a hat, and what do I get? No pee. she just went pee downstairs.

It is hard not to cry a little, even if the tears are inward. The disappointment is just as raw.

Hopefully things resolve without that Novolog in the next few hours.

I'm not sure when Novolog in respect to Gracie became equivalent to devil/badnastyshit. But it has. I just don't want her to have what I have. How long can I pretend that she doesn't?

As long as I don't have to carb-count her meals.

I Can’t Do Everything

2007-10-10T05:50:00.000-07:00

But I want to. I received a few emails yesterday from a coworker/friend. One such email concerns this CAN DO conference which sounds AMAZING. It is also held on a weekday from 9am – 3pm. Now, considering that I am allotted 80 hours of vacation per year, 64 of which are intended for use by my Partners in Policymaking training, I am left with a mere 16 hours of vacation that presumably needs to be saved for the inevitable childhood illness (excluding current chronic condition complications).

Participating in this amazing workshop is going to have to wait until next year. It breaks my heart, because I should be there, not here at this job which pays my bills (sufficiently important yes) yet does nothing to appease the mission my soul has endeavored to be on. As an alternative to attending this conference myself, I want to get the word out to other Minnesota families. According to the “Summary of Key Recommendations from Recent Reports and Work Groups on Disability Services” which was created to help inform CAN DO Action Conferences, there are at least 175,825 individuals in Minnesota who are receiving SSI and SSDI. There are countless other disabled adults and children who receive other services in the state of Minnesota. I’m hoping that if I help get the word out about these regional conferences (that just so happen to be FREE!), that it will draw some strong Minnesotan advocates to help create positive change in our state.

I, on the other hand, am planning upon attending a Forum hosted by Arc Central to share their 2008 legislative agenda with members and to reach out to policymakers concerning how their decisions impact the lives of individuals with disabilities. These are more time-friendly for me (6:30pm – 7pm on a weeknight) so are more workable with my schedule, and although I am a member of Arc Midstate, I’m sure they won’t turn me away. Please send a comment my way if you want more information on the dates and locations of these awesome opportunities to meet with your local legislators.

The Life Cycle of No

2007-10-08T16:17:00.000-07:00

I have noticed that oftentimes a none-other-than-no metamorphs over time into a maybe and eventually a positive exclamation known more universally as a yes.

I find this absolutely intriguing. And evidence of the life cycle of no is not only present in my own life but in everything I come into contact with. We may start with a concerete no, absolutely not, never on your life even as we slowly morph into a perhaps if you can accomplish this or document that. After a certain amount of time, a time whose length is directly related to the persistence or insistence or perhaps annoying factor established by said inquisitor, morphs into a yes I suppose and once this stage is established a "yes, absolutely!"

When I began running in August of 2005 I could not even run a half mile. I had no notion of my goal to complete a half marathon until January of 2006, but even then, the completion of such a lofty physical goal (13.1 miles) was beyond me. This was a definite no. With the certain endurance capabilities I had acquired, even as such, I was far from prepared for a 13.1 mile course. But as weeks turned into months, finally on June 3rd of 2006, I finished, successfully, my first 1/2 marathon. So where I started from a most certainly not, through persistence and belief and consistency of practise, I accomplished something that will build my spirit in regards to my strength and my understanding of what I am capable of for the rest of my life. A couple months later I upped the ante and finished my second half marathon in approximately 10 minutes less time than the first. And a door that had ALWAYS been closed (the NO door) was once again opened. (The I CAN door.)

While running taught me amazing things about how my perspective of what I can achieve can radically change through persistence and dedication, I have read time and time again how committment to a cause can cause radical change outside of oneself. We need only look to the civil rights movement (not only for racial equality, but also women's suffrage) to garner awesome encouragement from groups that set their sites on a cause, a sense of entitlement, and did not sit passive after one, two, three, or even twenty of those restricting no's. Eventually those no's turned into a yes, and not just an okay, but an overwhelming acknowledgement of their fundamental equality.

This is also present in the current disability rights movement. If I had not had the awesome opportunity to meet some amazing men and women with cognitive delays, I never would have realized how functional and EQUAL these men and women are. I also would not have had the amazing chance to learn that our "humanity" does not have income limits, or even disability limits. Not one of us is less human than another, and each of us has an amazing story that has pivotal input in the grand scheme of the entire "human story" or "human experience."

My son, one year or so ago, received a Sony Playstation 2. Believe me, soon after giving him this box, I questioned my own sanity. Sandis playing video games resulted in instant and multiple meltdowns. It was HARD WORK.

Sandis has now beat Harry Potter (both of those video games for PS2) TWICE. This child that melted down because of the diffficulty of this game had enough persistence and PERSERVERENCE to stick with these games, for over a YEAR, and eventually beat the game.

A year is a long time for a six or seven year old. A really long time.

How long is that same year for a 29 year old? Moment enough to blink? How long is enough? When do I give up on what I believe in?

So while I endeavor to spread the word on disability rights, and while I make the effort to make this story of ours directly apply to you and your life, and your family's lives, and your friend's lives.....I understand that this is a lifetime objective.

And there is not a NO that will stop me from finding that YES that I am certain is just a little bit farther down the line.

Another Time

2007-10-07T17:00:00.000-07:00

At times, it would seem, that memories of another time are nothing but a disservice to the current time.

Now while I understand that everyone who lives to be my age (29) was at one point in time 16 (or for that matter 17), sometimes I wonder if the memories that others have of this time period are as disturbing and displacing as mine are.

That picture up there? That is me. Oh well, I'm the girl (obviously) and the boy? Well he is of no primary importance. Although, he was of utmost importance for around 3-1/2 years of my teenage existence.

I don't remember ever receiving this picture. I don't remember this picture being taken. But I remember me. I remember him. And as such, I received it at some point as a gift from the boy illustrated above, who I seem to have locked lips with. He, as is apparent by the scrawls on the back, was in some sort of love with me.

I must say, remembering, it makes my skin crawl. Should it be that remembering one's teenage years causes such a revulsion? Or perhaps it is just remembering this him, this nameless he-person that affected my life so miserably for so many years.

It was long ago, 13 years at most, 12 years at least, since this picture. I found it, face-up, in the middle of my living room floor. I haven't the foggiest idea how it got there, but I imagine that one of my children (in the hustle and bustle and lag times of weekend life) found this picture amongst others and exiled it to the center of my living room carpet.

I don't ever remember this picture being taken, as I said. That perturbs me. Here I have a most (ominous as it feels) literal memoir of my past, yet it seems to have never existed, this moment in time, for me.

I imagine it was taken in a cemetary in Littleton, CO. I imagine, I cannot be wholly certain.

I am entirely uncomfortable with it's presence and as such, my ownership of it. But I am drawn to it, searching the far-reaches of my mind, seeking out what I have long left behind.

Is that not odd?

Check it out!

2007-10-05T10:36:00.001-07:00

So the St. Cloud Times took my note to heart, and published my letter to the editor!

I had to cut 120 words from the original, but that wasn't so hard. I'm a writer who uses a lot of fill.

Credit Where Credit is Due

2007-10-04T10:52:00.001-07:00

I’ve been inspired recently by an awesome woman named Kathie Snow.

Kathie Snow is an amazing disability advocate. She has written many articles, a book, and also travels the world as a speaker. The first resource packet (reading material) I received from Partners in Policymaking was stuffed to the brink with Kathie’s articles.

Kathie has opened my eyes to the importance of language, the effects of language, and the importance of full inclusion. Many of my recent thought processes have been heavily influenced by Kathy.

Please go check out her site Disability Is Natural and give her stuff a look-see. She is amazing, inspiring, and thought-provoking.

In His Words

2007-10-03T09:58:00.000-07:00

My son receives special education services. As a recipient of these services, he also has had an opportunity to befriend many children that also receive special education services but have less opportunities for integration and mainstream class experiences. Today Sandis had some thoughts about one such little boy that I’ll call “Bob”.

“My friend Bob doesn’t talk out loud using English, Spanish or even sign language. He talks in other ways but in quiet. Sometimes he and I get into trouble because we are playing and not doing what Mrs. ----- wants.”

This is fascinating to me. It never occurred to my son to say that Bob didn’t talk or that Bob is nonverbal, he just doesn’t talk “out loud.” He talks, of course, because Sandis communicates with him and plays with him several times a day, but it just isn’t in the way that you and I are used to.

So why is this important?

This is important because my son is demonstrating to us adults what true true lack of discrimination is. The very fact that it never occurred to him that Bob didn’t talk, only that he talks differently, is awesome and telling. I have seen the word non-verbal in reference to children and adults many times, but now I question its validity.

All humans, regardles off their abilities, communicate. Some just don’t talk “out loud."

An Open Letter to The Saint Cloud Times

2007-10-01T08:46:00.001-07:00

Check me out, I'm here now!