Health care is a basic human right, not a privilege. For some reason, we’ve allowed ourselves as Americans to be fooled into accepting that one must be blessed with “means” to actuate appropriate health care. As a nation we have failed to realize that our health care system is a barometer of our society’s value for human life.

-Me

Wednesday, December 24, 2008

A 7.0 Victory! ...among other things

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.

Friday, December 19, 2008

Thia Apple

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.

Wednesday, December 10, 2008

I have been reading.

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/)

Tuesday, November 25, 2008

177

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.

Wednesday, November 19, 2008

I am not broken

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.)

Thursday, October 16, 2008

The New Piece of the Pie

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.

Saturday, August 30, 2008

Fun With Babies


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!

Friday, August 22, 2008

Medication and Other Such Things

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?

Tuesday, August 12, 2008

The Vast Considerations (not Vas Deferans)

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.

Monday, August 11, 2008

You Give Me Fever

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.

Friday, July 25, 2008

Married!



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 

Monday, June 16, 2008

I Feel As Though an Explanation is Owed

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…

Wednesday, April 16, 2008

Retail Bliss……Or Something

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….

Friday, April 11, 2008

What Kind of Health Care Reform Does Bob Olson Support?



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.

Tuesday, April 08, 2008

On Being Rich

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.

Monday, April 07, 2008

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

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.

Friday, April 04, 2008

April is Autism Awareness Month

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.

Thursday, April 03, 2008

The Business of Being Busy

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.

Wednesday, March 26, 2008

Live the Change You Dream Of.

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.

Friday, March 14, 2008

My kids grow up.

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.

Wednesday, March 12, 2008

DFL Monthly Meeting - District 15

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!

Tuesday, March 11, 2008

On Poverty

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.

Tuesday, March 04, 2008

A Leap of Faith

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.

Monday, March 03, 2008

Breaking up is hard to do…….

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.

Thursday, February 28, 2008

The Happiness Litmus

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.

Wednesday, February 27, 2008

Monday Letter to the Editor

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.

Thursday, February 21, 2008

Health Care/Coverage Costs

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.

Tuesday, February 19, 2008

On Chronic Pain

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.

Thursday, February 14, 2008

Support the Minnesota Health Act!

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

Tuesday, February 12, 2008

Housing Coalition, Volume 3

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!

Friday, February 08, 2008

Associate Chair & CGM

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.

Thursday, February 07, 2008

Information & Organizations

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.)

Wednesday, February 06, 2008

Caucus Events & the American Dream

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.)

Tuesday, February 05, 2008

In the Paper

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

Check it out!

Caucus Much?

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.

Sunday, February 03, 2008

Thursday, January 31, 2008

Desperate Times Call for Desperate Measures

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!

Wednesday, January 30, 2008

Amazing Change on Our Horizon? HR 676

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.

Tuesday, January 29, 2008

Newspaper Funnies

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.

Wednesday, January 23, 2008

May The Force Be With You

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.”

Monday, January 21, 2008

November 1, 2008

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.

Friday, January 18, 2008

Check It Out

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

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.

Wednesday, January 16, 2008

8 & 5




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?

Tuesday, January 15, 2008

Tomorrow

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.

Monday, January 14, 2008

Upcoming Plans for 2008

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.

Wednesday, January 09, 2008

This Is So Cool

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!