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.


Tuesday, October 31, 2006


Gracie's two hour PP tonight was 177. I feel like crying. This is the highest it has ever been.

I don't want to be strong. I want to cry. I don't want to be invincible mommy, I want to cry. Thank God my kids are asleep, now I can cry.

All I want to do is cry. This isn't going away. I can't believe that this is happening to my tiny little beautiful peanut. It just doesn't make any sense that it would happen to her.

Somehow I am expected to hold this tender little family together with shoelaces and I don't even want to try. All I want to do is cry. Why me? Why her? Why MY baby? Her life will never be the same. I don't want to do this. I don't want this.

People are going to tell me that we are lucky we caught it early. Will that make it go away?

I'm going to go cry now, so maybe tomorrow, I will make it through until again they are asleep, and I can cry again.

I'm Not a Believer (Not Yet Anyways)

Today, the pediatric endocrinologist from Children’s Hospital called me at work. ( I thought Gracie was being referred to the IDC, but I was wrong, she is being referred to the Children’s Hospital.) We talked some……and really, she is on a different plane of belief than I am. I’m not of the believing species yet. I don’t/can’t/won’t believe this, not yet.

Gracie’s blood sugar this morning was 91. Woohooo! After a full day of 150’s, 160’s and then rounding down late afternoon and evening to 138 and 107, I was THRILLED to wake up to a nice healthy 91.

The doctor discussed why Gracie had ketones (and not talking just a little, we are talking a WHOLE HECKA BUNCHA LOTTA ketones) in such a high quantity and also discussed Gracie’s diet some with me. The doctor believes that perhaps because we eat so few simple carbs (we don’t even drink milk, we do unsweetened soy milk which is 4g carb per 8 oz, but that is another post) this could explain why Gracie is building up ketones yet keeping lower sugars. See, the sugars and amount of ketones don’t jive which led to this discussion. It makes sense as really the only simple carbs we routinely eat are bananas and apples and other fruits, which other than the bananas are fairly high in fiber reducing absorption rates. Also, typically we eat our bananas with peanut butter. Funny, because Gracie had these elevated sugars coming off a day with a babysitter where they consumed pretty large amounts of juice (finished off two bottles when normally two bottles (32 oz) will last over a week). She said that if Gracie continues to have higher ketones but more normal blood sugars, we may have to start her on a very small amount of lantus to help reduce those ketones and keep even her smaller spikes down.

The things is, and forgive me as I know this entry is not well composed, is I haven’t yet accepted Gracie as a diabetic. I’m holding out that maybe that isn’t what it is. The doctors are already treating it as though it were diabetes, and it freaks me the hell out. I am okay when I can say, hey maybe it isn’t this, but when the doctor calls and starts talking about getting her prescriptions for insulin and stuff ready for when she needs to start the insulin and eventually starting her on a pump, I just can’t take it, because I’m not yet there. I’m not yet a believer.

Add to this all, my son’s IEP process is now at it’s beginning stages. I’m poised to tell the social worker sometime today (when she calls me back) not to expect me to sign a medical records release for the school, but I’ll be happy to provide them with any information they request or also very happy to accommodate them with a conference call to my doctor (with me included) if they need information that they need to get from the doctor they can’t have me get for them. I’m not very good at telling people no, but I’m also not about to give an educational institution full access to records that they are not fully qualified to process (if they were doctors, perhaps, but social workers, no, they don’t need his labs, they don’t need every iota of conversation that I’ve had with Sandis’s doctors). I’m a little stressed about this. I feel it is the right thing, but I hate stepping out of the box of what they hope for and I hate telling people no. I guess I will use this as a personal opportunity to build up my NO skills. Ha ha, you would think I would have gotten enough of that learning to say NO to drugs in public school……!!!

The list of things I need to do is getting bigger. I’m dreading the next walk up to HR to request yet ANOTHER FMLA form, this time for Gracie, and explaining how bodily misfortune and dysfunction has once again fallen on the family of three (My peanut, pumpkin, and me the mommy of multiple misfortunes…)

I need to write this more, so that I feel it, I believe it, and I carry it high so others see this in me instead of my troubles right now. I am NOT defined by my problems. I am NOT defined by my health or how my health is perceived by others. I have been given, and my children have been given, wondrous intelligent invigorating souls begging to be seen by you, by me, by everyone who comes into contact with them. Their diagnosis are only parts of their greater mold, the mold of their total person. They/we are awesome, they/we are God’s creatures, they/we are not mistakes, they/we are exactly how God made them/us. And that is truly truly perfect.

Now I’m going to go conquer the world, or just be the best damn advocate my children could ever have hoped for. Seeya! Oh, and happy Halloween!

Monday, October 30, 2006

I Should Move to the Cities (a Note About Some Lab Results)

Is it ever a good thing when your pediatrician calls you at home, at night, and leaves a message for you to call her back not tomorrow but tonight, about lab results?

I have to laugh, honestly. After a lifetime of trying to get doctors to call me back, they call me when I really don't want to hear from them! hehe....

So, on to Gracie's lab results. I figured this deserved a post, rather than nestling it as a reply in the comments, because well, it will only lead to future posts. Turns out Gracie's lab results are good, overall, all except for her urine catch....She's got ketones. They got her blood sugar at 131, but with loads of ketones. Considering that my daughter wakes up a few times at night to drink some water, we're guessing she wasn't dehydrated.

Gracie's pediatrician apparently called a pediatric endocrinologist in the cities to get her take on the situation, and her take is that Gracie needs to be seen at the endocrine clinic in the cities within the next two weeks. Her take is that this could be the beginning of diabetes, especially considering the family history. Gracie's ped. told me that they don't treat with insulin unless the fasting sugars are consistently over 150, and then she instructed me to start testing Gracie's fasting blood sugars. Today her fasting was 156.....And with extra ketones in her little body, no wonder she got sick and puked this morning.

Anyhow, I guess between Sandis being seen at the U of M wrapping up his PDD diagnosis and care plan, me starting care at the IDC and pursuing an islet transplant, and now Gracie beginning care at the pediatric endocrine clinic at the IDC sometime in the next two weeks as well, hell.....I may as well just LIVE in the cities. I may as well just LIVE at the damn doctor's office.

When I checked Gracie's blood sugar this morning and it was 156, I recoiled. When I tested again immediately and it was 149, I croaked. I mean, I let out a croak. I stood up and I walked across the room and I croaked a strangled moan again and sobbed. I was grateful for Bob's arms holding me, even though he didn't know what was wrong. I know that sugar isn't right. You know that sugar isn't right. You don't wake up with sugars in the 150's if you don't have endocrine issues. I don't want this, I pray this doesn't really happen and I don't want this to be the future for my little girl.

Sometimes stuff just happens. Me and diabetes. Sandis and PDD/Autism. Graice and diabetes? What cause do I pursue? Will we be a family of causes? Will I still have a freakin job?

All I can say is this, God has given me beautiful children, a beautiful life, and we are wonderful and whole, even with every little way that our bodies betray us. We are not meant to be on earth forever, but we treasure the time we spend here.

Oh, and I am so totally gonna kick ass at Tae Bo tomorrow. Damn diabetes bastardonian disease.

Blood Sugars This Morning




These are three blood sugars from this morning. If they were mine, I would probably be fairly happy with this range of morning blood sugars. They aren't too low and they aren't over 200, and I probably don't feel like crap in this range.

The thing is though, these aren't my sugars this morning. These are my daughter's fasting blood sugars, with the 158 about an hour and a half after the first two readings.

I've taken her into the doctor this morning, as she's been having an array of disturbing symptoms (one more thing to add to my plate) and she also threw up this morning so I figured since I have to stay home anyway....The doctor isn't concerned about the blood sugars saying that they aren't high enough to be diabetic range and sometimes with sickness the blood sugars can rise slightly, as the body's natural response to sickness. The thing is though, I've had a high with Gracie once before (164) and through all of Sandis's six years and multiple blood sugar tests both sick and healthy, he's NEVER had an elevated sugar.

You better believe I am gonna keep on testing the peanut.......Today and from here on out until I'm convinced that this is normal, but I doubt I'll ever find comfort in fasting sugars that are in the 150's. It just is too high.

Thursday, October 26, 2006

How I Feel About Autism/PDD – One Week Later

I’ve started to write this, and stopped, a few times now. I have so many things I want to share, and feelings I need to get out, that finding the beginning seems impossible. The chronological beginning is too far away. Besides, this is not a justification of Sandis’s diagnosis, it is a summary of my feelings, and how tricky these can be, and how often they make so very little sense!

Soon after kindergarten started, I started asking Sandis if he had made any friends yet, and who his favorite little boys were in class. Sandis responded: “I don’t have any friends mom. I don’t want any friends. I like playing alone.”

Autism is my son not wanting any friends and being okay with that.

The first behavior slip I received from Sandis’s kindergarten class was because Sandis had hit another child. When I asked Sandis why he hit the child, he said he didn’t know. It turns out that Sandis plays with this little boy quite often, and they are friends.

Autism is Sandis hitting a little boy who is his friend, just to get his attention. Autism is Sandis not understanding why he did this. Autism is Sandis not understanding social graces and being oblivious to social cues.

I always thought autism was reserved for those children with learning delays. When I thought of children with autism I thought of children who could not play with toys, who could not smile, who could not talk, who had no means of understanding their feelings, other’s feelings, much less how to come to terms with their own. When I thought of autism, I thought of withdrawn children, children who don’t seem to belong to this world. Sandis is not like this. Sandis is vibrant. He seeks out friends, although he does not understand how to maintain a friendship beyond asking for a friend. Sandis’s signs of autism are so different than what I thought autism was/is. Over the past week I have felt so misinformed, especially as I have read about other children who have autism and what they are like!

High functioning autism is a diagnosis fraught with self-doubt. Is he just a normal little boy? Is this normal behavior? Is it just that he is learning how to interpret social cues a little late? Will he be just fine without intervention? Are the friends and family telling me that Sandis is just a normal little boy right? Are the doctors wrong? Is my intuition wrong?

I can’t defend this diagnosis. I can, but I won’t. I will offer it to my friends and family and it will be, because I KNOW something is not right, I SEE things that are not right. Being developmentally delayed IS a learning delay. If you cannot socially interact appropriately, if you cannot appropriately respond to new situations, if your senses are an assault rather than a benefit, you cannot learn normally.

How do I feel about autism? I don’t know. I’m all over the place, but I am accepting, and I want to learn more. I want to understand how to make my family more responsive to Sandis’s needs. I want to do this while I reinforce to my peanut miss Gracie how invigorating and awesome I find her presence to be, despite expending some extra energy right now on her brother. I want to be SHE-RA and be the master manipulator of time and money and make this work so that no child is left behind, and not in politics, but in my family.

Can I do this? Absolutely. Just like with my diabetes, the variation is great (The average of 50 and 300 is 175, right?), but over time, if you reduce that variation, you can zero in on the really problematic areas. Right now with autism and my family, we are new on the pump with ONE basal rate. But………..I’m gonna wake up every hour on the hour and check to see whether I’m dropping or rising….And that, my friends, is all I can do!

Tuesday, October 24, 2006

Pumpkin Adventures and Other Such Things

So yep, we carved a pumpkin. And it was FUN! Mom (me) has had a lot on her mind these past few days, so it was nice to let Bob the Builder (if only the pumpkin builder) take over and entertain the kids in something as fabulous as creating a pumkinonian work of art.

The kids got to get their hands into some of nature’s true slime (thankfully not too much ended up on the floor)

Sandis got to try his hand at carving….(although please don’t try this at home with truly sharp objects, even our end result wasn’t that great, as at least one scrape resulted!)

And we all finished off with a fabulous pumpkin, completely designed by Sandis, with a full assist going to Gracie Ardith.

When all was said and done, the kids refueled their engines with some veggies and fruit. Well Gracie settled for a salad, and Sandis went wild with a peanut butter banana.

And………just to end things on a good note….check out Gracie’s boots……They are on the wrong feet!

Monday, October 23, 2006

Going High and Mighty on the Weekend

Holey Moely, what the heck is going on? Actually, it isn’t like this is anything new…It is just that now that my weekday sugars are so much closer to what I want them to be, that it is so much more striking that my weekend sugars are such a ridiculous mess.

Case in point –
Weekday Average = 145.6
Weekend Average = 174.92

Iccckkk. I mean, I am okay with the weekday 145.6 average, because I know that that actually isn’t that bad. Eventually if I eliminate my nasty lows and some of my highs, that I’ll probably still average around that anyways. It is that weekend thing.

I even know why my weekend sugars are rotten. Yesterday, I ate ¾ of a bag of good n plenty’s. (Bangs head on desk). I checked my blood sugar after dinner and clocked in at 87. Wooohooooo! So me, in my weekend rationality, figure hey! That’s low enough to snack on a small amount of good n plenty’s. The thing is though, once that bag is open it is sayonara sister to any remaining good n plenty’s. And it really doesn’t matter where I hide the bag. Unless I throw it away, that bag and all of its contents is truly truly out of luck. I also am a snackaholic. I take a bite of this, handful of that, sip of this n that…..MMMM, why oh why is my blood sugar in the 200’s? Damn weekends….

I can counter with the high stress of the past few days, and that makes sense, but really, I know I’m obsessively stuffing my face in response to the stress, and that on the weekends, I stuff my face with so much more EASE than any other time. (Sighs and looks at waistline)…..

Soooo, I am brainstorming ideas to secularize my blood sugar scrutiny so that the weekend has a separatist feeling. This way I can more closely look ONLY at what I am doing on the weekend. That way I can feel super guilty about the choices I’m making, and perhaps the guilt will eat my obsessive eating patterns alive and waaaalaaaaa I will magically have perfect sugars. Yaaaaaaaaaaaaaaaaaaaaaaaa. I’ll tell you how that goes for me.

Sunday, October 22, 2006

These Past Few Days...

So, obviously I have something new to think about and occupy myself with these days! I'd expect to see a few PDD-NOS and Autism links and references popping up around here in the near future, once I get the opportunity to find a few places I like (which I have). My blood sugars have been pretty rough, my diet has been even rougher, and exercise, what the hell is that? I can't even begin to fully count how many calories I consumed yesterday, but I'm thinking probably around 2500. I did that on Thursday night too, so I'm certainly on a roll.

My knee is doing well, my right medial meniscal tear, and last week I had taken my running up to 3.9 miles (woohoo!) but this week it is back problems. My knee problem was actually a direct result of my back problem. I sprained my sacral iliac joint last December and now I have a tilted sacral iliac joint (on the right) that can cause some pretty rough times the more tilted it is. I have been doing my physical therapy, and I have a stinky fat gut sacral iliac brace I have to wear, but these past two days have been pretty unmanageable where pain is concerned. I ended up calling Bob AND my mom (AACK!) sobbing yesterday as I struggled to drive and move my arms despite terrible back spasming. Today I am sitting very still with occasional back spasms as I sit here typing to you. My back is causing me problems and I may have to go to a medical doctor in addition to my physical therapist to try and rein my pain in. Running is pretty much out of the question at this point!

I'm really hoping that I manage to pull out of this, stop stuffing my face, and feel in control of my situation fairly soon. Yesterday I used almost 55 units of insulin, which is insane because normally I only use around 35 per day. My stress levels have been high, I am wanting to isolate myself, and I'm not making a whole bunch of sense right now!

Things are mellow with the kids, and we are carving pumpkins today (with Bob). Sandis is super excited because I told him we would enter the pumpkin in a pumpkin carving contest and he could win 10 bucks! His entire world has been lit up about this pumpkin since then.

What are your plans for Halloween? Sandis is going to be a red power ranger (I can't even begin to tell you how much I hate power rangers) and Gracie, she is going to be a princess. Which she is, and she acts like one too! I was a smart money saving mum when the kids wanted fancy plastic candy containers for halloween and I redirected to 42cent spongebob and spiderman bags that are "cool! and look how much more candy they can hold! (that I will eat half of)"

So uh, here's to candy, rotten blood sugars (i've been too close and personal with the 300 range lately), halloween, expanding bums, expanding knowledge about autism and mostly
Here's to life just getting back to normal.

Thursday, October 19, 2006

I've Got a Lot to Think About Today

Sandis had his appointment today. I think that things went well, despite a few early set backs. I arrived at the clinic a half an hour early, which was good. I had budgeted plenty of time to beat traffic and still make it through downtown Minneapolis. I was on time. Yippeee! The doctor, however, was NOT on time. That really bothered me. Finally, at 9:30am, one half hour after our scheduled appointment time, I decided I was really going to be bothersome and stand by the front desk and insist they find out where this guy was. Turns out the nurse that had scheduled our appointment hadn't relayed the info about the appointment to said doctor so he was nowhere to be found and wasn't planning on being there at all anytime today. GREAT! They did manage to find someone else to do the evaluation, and everything worked out well, but that was AFTER I broke down in tears at the front desk explaining we had all woken up at five and left Saint Cloud at 6:30 am to arrive here on time and beat traffic. Thank God they did not send me home without the eval. I would have been freaked!

I'm still working through a lot of the feelings I have after receiving their initial diagnosis for Sandis. They told me they believe he has a primary diagnosis of Pervasisve Developmental Disorder and a secondary diagnosis of ADHD. They then informed me that they do not treat the secondary diagnosis, only the first, as the first diagnosis likely aggravates the second. Have you ever heard of PDD? I really hadn't and I left there without a clear idea as to what it was. I did have quite extensive conversations with the doctors about my concerns for Sandis and for the first time in like, well, EVER, I felt like someone understood what it was like to be Sandis and to be AROUND Sandis. I felt justified and I felt RIGHT in my intense gut feelings that Sandis was not another ADHD case and that something else was really going on that was causing the hyper/impulsive behavior. I hope that as I learn more about this developmental disorder and we move forward with treatment plans that I will really have a chance to understand how my son is seeing, hearing, and feeling the world.

On that note, I also have a LOT of fear. This is brand new territory to me. All the sudden the doctor is talking about IEP's (I'm sure I'll know what this is up and down and backwards in a few months), dealing with school districts, family skill therapists, psychiatrists (We understand you don't want to treat with meds but they will help him and you should at least learn about them), occupational therapists, psychologists, PACER organization (you should really know your rights when it comes to developmental delays). I am on information OVERLOAD and I really know NOTHING!

I chose to start the evaluation stage in the cities, and I've decided to stay with care in the cities until we develop a cohesive treatment plan. At which point I will take this said treatment plan and transfer care closer to home. But all of these appointments! All this time missed at work! AAAAAAAAACKKKK! I had the foresight to pick up an FMLA form for this today in the two whole stinking hours I worked, but still, I'm wondering how we will manage as I work less hours, and we spend quite a bit of time in doctors offices, therapists offices, and with the school district while we hammer out a plan that meets my son's needs but also isn't too invasive and doesn't single him out too ridiculously. I mean, he isn't delayed in his learning. Sandis is a bright bright kid. It is the other things that are of most concern.

So I am sitting here, drinking beer #2 (I haven't drank in weeks) and I'm trying to process all of this. I'm not having much luck, obviously, I'm not much use after ONE beer much less TWO. I've entered a whole new world. In some ways, I am relieved. So much makes sense and I'm sure as I learn more about this disorder and the intricacies of it even MORE will make sense. I feel like we have opened a door to moving forward. I feel like God has given me a window to understanding Sandis. A lot more makes sense. But then after I feel that relief, I am overwhelmed by what is to come, and I hope I make good decisions. I hope that I can be strong to make the RIGHT decisions. I hope I know when to take advice, and when to ditch advice. I hope I remember that Sandis is Sandis. With this diagnosis this little boy does not change one iota, but perhaps how we help him succeed changes. It is all very very scary. And not scary like loud noises and monster house scary. Like scary I hope I don't screw up and regret it FOREVER scary. That kind of scary. And that is really damn scary.

Wednesday, October 18, 2006

Where Do You Keep Your Stash?

So….where do you keep yours? I keep mine in my bra. Typically. I mean, unless my outfit dictates that I should place it elsewhere. Ya know, I don’t need the entire world to know about my stash……er….my pump. Perhaps the days of “where I keep my stash” were retired after college, but ya know, I still stash away my pump, keeping the feeling alive and well!

I wear my pump in my bra, pretty much everyday. I’m not very well endowed, but I manage fairly well with the assistance of “water” bras (okay not really, but I remember those when they first came out!) and excessive padding. As a result of this, I have an annoying habit of lifting my shirt either up or down in public. I also rearrange in public, much like the crotch rearranging that drives us women up the wall about men. I ALSO have a musical bra. It has been commented on more than once, and when I actually had a functioning remote, I could make it beep any old time I wanted without touching my chest at all! (Pump musicians UNITE!)

Today I took my pump out of its aforementioned location to look for the number for Minimed (the best place to find their phone number!). Man this pump is nasty. Crusty. Just not pretty. This pump goes everywhere, sees every drop of sweat that accumulates between my paltry girls, and let me tell you it is really showing the wear. I tried cleaning out the ridges with my fingernails. No such luck, my fingernails are neither long nor tough enough to handle this grime. Gross. Me. Out.

So tell me….Am I the only pumper that has this problem? I’m assuming I am not the only one (maybe this assumption is taking my acceptance of this grime too far) and I’m hoping for some great ideas for ways to clean out this crusty mess. Perhaps even ideas that don’t include using a pocketknife, although I do have one that may see some pump action if all else fails!

Monday, October 16, 2006

The Blahs and Other Such Things

Maybe it is the weather. Maybe it is the time of year. Maybe it is because I live in cold, humdrum Minnesota where being in the comfortable climate median is more of a fantasy rather than a reality that ever plays itself out. Regardless of the whyevers and whatevers of my blahs, I’ve decided I most certainly have them. Seriously. I ate a chocolate chip cookie dough blizzard yesterday. I reined in the sugars pretty well but woke up this morning at 211. I corrected and metered in at 379 one hour later. WTF? So what, is my body releasing cortisol to make my emotions feel better? Some sort of steroidal anesthetic? Hmmmph. I don’t care WHY or WHAT is causing this but it is PISSING ME RIGHT THE **** OFF.

That being said, I really had a tough week last week. Sandis had his first Kindergarten conferences last Thursday. It did not go so well. Sandis’s teacher wonders if I have ever thought about having Sandis checked for “hyperactivity disorder”. GRRRRRR….

Truth be told, Sandis visited with a psychologist when he was three to be evaluated for the aforementioned disorder. He was handed, on a silver platter no less (not really but it felt that way) with a provisional ADHD diagnosis. Provisional meaning that it was a diagnosis that pended upon his behavior as he grew older. At age 3, it really is very hard to pin ANY child down long enough to effectively evaluate them for something like ADHD.

Following this provisional diagnosis I met with Sandis’s psychologist several times (myself only) learning different parenting techniques to use with Sandis to help him manage his energetic and impulsive tendencies. Over the past few years, Sandis’s behavior has improved exponentially. He is such a smart, happy, well-adjusted (okay maybe I’m taking it a little far here) little boy! I had high hopes that he would really do well in kindergarten this year. He still has problems staying focused, but he really works hard on this!

When Sandis’s teacher mentioned that I should take him to the dr. to have him evaluated and possibly treated for hyperactivity disorder, I felt like I had been punched in the gut. I felt like I had failed. I felt like WE had failed, both Sandis and I. The next thing that happened is that my guards went up. Sandis and I have worked very hard and seen great improvement with his actions and impulsivity, and I REFUSE to let a teacher DIAGNOSE him and I REFUSE to fall prey to the growing trend of medicating every active child in the American universe.

I believe that Sandis has been blessed with passion and energy. I believe that what the teacher finds disconcerting and a trial in her class now is what will eventually be a truly valuable trait of my son’s. I do not want to take this away from him! I want to teach him how to function with the gifts and blessings that God has given him. I think we ALL know that not every gift and blessing in our life is always easy to have! My children are blessings, but they challenge me every day! I believe that medicating Sandis to make him more “acceptable” to his teacher would be denying him this awesome gift that God has given him. In his good moments, Sandis’s energy and passion will lift your heart. In his bad moments, they will make your ears blow steam. That is my son, that is who he is!
Beyond my frustrations with my virtual diagnosis of ADHD from Sandis’s teacher, I have also been putting a lot of thought into Sandis’s actions lately and when he is most reactive and seemingly most out of control. I’ve noticed that Sandis is EXTREMELY sensitive to noises. He is also sensitive to lights (fluorescent especially), some smells, and especially sensitive to motion around him. If there is too much noise, light, movement, smell in any one environment, he literally cannot “bring himself down” or “center” himself. It is like he can’t think beyond the sensory stimulation. I see this, and I recognize that perhaps there is a problem here. I have to recognize this because he is my son and I KNOW that there are certain places and situations that my son just cannot tolerate. I have made provisions to deal with Sandis’s sensory sensitivity in my daily life and actions, but how would his teachers and the school staff know to do this? I also believe that Sandis may SEEM ADHD to his teacher, but I really don’t think that ADHD fits my son. I think his teacher is wrong.

I called the ADHD pediatric psychiatry clinic at the University of Minnesota on Friday. I talked with a psychologist there who has agreed to see Sandis and evaluate him for ADHD and the many things that are often misdiagnosed as ADHD. This clinic also has a medical doctor and a psychiatrist. They are equipped to not screen patients with the intent to diagnose ADHD, but with the intent to truly find out what is causing the child’s problems, whether those problems are medical, psychological, nutritional, etc…..The psychiatrist did tell me, after our conversation, that from what I described, Sandis did not seem to fit a traditional ADHD profile, and that we would talk more when I see him at our appointment. I scheduled for October 19th so I’ll keep everyone updated!

There is also the possibility that my son is an active/alert personality young man who has enough energy that he could certainly spare some to his classmates! Thus far, Sandis’s learning has not been impaired by what the teacher has called attention problems. We DO have a behavior intervention meeting planned with a behavior interventionist at the school on October 25th. I am scared of what the future will bring us, but I am willing to do whatever it takes to make my son’s school experience as good as it can be. And honestly, it doesn’t have to be at THIS school with THIS teacher that that happens!

Saturday, October 14, 2006

Baking with Splenda I did IT. I realize that IT could mean many different things to many different people, so I suppose I will elaborate a little further. I baked with Splenda.

Splenda and I have a weird relationship. I really really do NOT support artificial sweeteners. I think that God blessed us with so many natural sweet alternatives that taste SO much better and used in moderation and in appropriate combinations, these sweeteners really shouldn't send my blood sugars into kingdom come (except of course for honey, damn you honey!). The thing is though, that I secretly use splenda from time to time. I use it in plain oatmeal when I don't want to use an additional fifty cals that day on maple syrup or raw sugar and I also use it in the two cups of coffee I have per week (one on Saturday and one on Sunday). It is a hard habit to get out of and one that I am so deeply ashamed of (depending on the day!). I actually have a few dietary guilty secrets that go against everything I believe in concerning nutrition, and I DO plan to wipe my guilty conscience clean one day soon in a different post, but....not today!

Throughout this week I have had bananas, about 14 of them, steadily ripening and softening in my fruit bowl in the middle of my table. Watching time work it's mushy magic on my bananas fed my carbohydrate crazed "I should BAKE" craving.

I decided that it really, TRULY would be a sin to have to toss all these bananas, so I settled on banana nut bread. MMMMMMMM....Banana nut bread!

As my plan came closer to fruition, so my conscience came into play. "Wow, your blood sugars will soar with that, you can NEVER have just ONE piece of this stuff. Your hips are gonna expand like melting butter. Butter, there is BUTTER in this recipe! ACCCKKK!"

I chose a nice recipe from the Byerly's web site and off I was to the grocery store to stock up on the few things I needed to complete this recipe. With thoughts of jiggly hips and expanding thighs, I ultimately settled on buying Splenda (cup for cup measured like sugar) and LIGHT butter. I substituted half of the sugar with splenda and substituted light butter for the butter, and amazingly, things turned out pretty well!

I had not one, but TWO pieces, bolussed for 25g carb (I have no idea if I am even in the BALLPARK on this guesstimate), and we'll see how things go!

The fun REALLY starts tonight when Bob gets back from the cities and I have HIM try it. I, of course, won't mention that this is the LIGHT version! I hope he likes it!

Thursday, October 12, 2006

Exercise and Later Lows

I’ve heard about this time and time again. You take up exercising or have a particularly busy and active day, and you fight off lows the rest of the night. How can you avoid this? Why does this happen? Why does it seem to happen at some times more aggressively than others?

I have to admit that I really haven’t had a whole heck of a lot of problems with later lows post-exercise. The only times I’ve really noticed that I’ll be dropping a few hours after a run is if I run six miles or farther. The farther I run, the more sensitive to insulin I will become approximately 4 to 6 hours post-run. My lack of experience with this could be attributed to the fact that I exercise daily, generally around the same time, so my later lows actually happen every day and my basals accommodate for them.

The first time I really noticed later lows was after a seven or eight mile afternoon run. I ran between 3:30pm to around 4:40 pm. I went home, corrected my usual correction for the ridiculous post-exercise spike, then sat down for dinner. I was bewildered when I got slammed with a low in the 30’s at around 9pm. I had some juice and had an additional snack which I bolussed for (don’t want to spike too high!) and then an hour later, I’m back in the 30’s with half of my insulin still on board. YIKES!

Throughout the weeks of my training, I only noticed these severe later lows on days that I ran farther than six miles, or in other terms, longer than one hour. What I usually would do in these instances is just eat more. If you are running 35-45 miles per week, eating more is just fine! I can imagine though, that if you are having later lows as you are introducing yourself back into an exercise regimen that you probably aren’t burning the amount of calories that would making snacking a little more a suitable option (unless you want to gain weight!)

My doctor advised me to not correct my post-exercise spike, to help prepare for the later lows. Since I never noticed the corresponding drop in sugars until at least four hours after exercise, that really didn’t seem like a suitable option. After my longer runs it was not uncommon to spike up into the 200’s, and I did NOT want to wait four hours to come back down to normal, assuming I had a later low in the first place. I believe that had I adjusted my basals down 25 – 30 % I probably could have avoided my most serious lows.

After my long runs on weekends, I would always set my daytime basals beginning 2 hours after my run at 70% of my basals for 8 hours and that seemed to help eliminate lows after runs where I was out for longer than two hours. I also noted I would have more serious lows more often after longer and more intense workouts. I had a basic schedule set up for evenings in which I ran greater than six miles where I would not bolus for my night time snack and not adjust my basals at all. I think whatever you do to help manage the later lows, whether you cut back basals, eat more food, or cut back boluses on meals that fall into the time period you are expecting a later low, should help. Just being aware as you are entering into an exercise regimen that you may have the later lows is a great first step.
One curious thing I did note as I became more thoroughly entrenched in my running lifestyle and aggressive amounts of exercise, was that over the past year or so, my basals have universally gone down. A year and 3 months after I began running I have shaved approximately 10 units of insulin per DAY off of my TDD WITHOUT cutting calories. Be aware that sometimes your later lows could actually be decreased basal needs.

Another curious thing I’ve noted through my running journey surrounds insulin needs at the specific time of day that I routinely exercise. For the first year of running, I routinely ran between 3:30pm – 6pm on weekdays (3-4 times weekly) and then ran in the mornings on weekends between 7am and 10am. For the time period between 3:30pm-6:30pm, my basal needs on days that I didn’t run very quickly decreased. It was almost as though my body has a memory of when I work out most often and the metabolism revs up at that time of day whether I work out or not. I’ve recently switched my main workout time from the afternoon to 5:30am – 6:30am and after around two months of this, I have begun to notice AGAIN a decreased basal insulin need during this time even when I don’t work out. Strange how our bodies work!

Tuesday, October 10, 2006

Weird Lows and Long Walks with the New England Journal of Medicine

I woke up this morning at 5:30am with a blood sugar of 57. I felt fine, but this low was weird. I even retested just to be sure. It is weird because of my morning basals, and how they are set up so I can work out from 5:30am to 6:30am. From 4am – 5:30am I have my basals set at 0.05u/hr, the lowest possible basal other than delivering no insulin at all. That means that for an hour and a half before my low blood sugar value of 57, I receive only this basal rate of .05u/hr. My morning basals during this time period for mornings that I don’t wake up and work out is .6u/hr. Hmmmmm. Something to scratch my head about I suppose.

I am full swing into completing my application for the islet transplant. So far today I have sent out paperwork to my PCP and dentist. I still have paperwork and releases to be sent out to my ophthalmologist, endocrinologist, and gynecologist. One thing that could kick me out of this trial is my weight. I’ve gained between 2 and 8 lbs (I fluctuate okay!?) in the past few months as my running has been reduced due to my knee injury. My most recent weight was 162 (BMI of 25.4) but I’ve been known to swing in the past few months up to 168 (BMI of 26.4). I need to keep my BMI under 26 to qualify, so until I hear I’m booted out for some other reason, it is diet city baby! To be able to have an eight pound weight fluctuation, my HIGH weight needs to be 164 and my LOW weight needs to be 158. That means I need to lose FOUR POUNDS. Damn damn damn damn damn. Ah well, I’ll just reacquaint myself with the awesome joys of salads and oatmeal. Wait a minute, that is what I eat already! I’ll just reacquaint myself with LESS oatmeal and salads, and perhaps a few less cookies as well…hmmmph.

I went on a walk today during lunch break with my nose buried into a New England Journal of Medicine Report on “Islet Transplantation in Seven Patients with Type 1 Diabetes Mellitus Using a Glucocorticoid-Free Immunosuppressive Regimen.” Um, that was good stuff. Thankfully, I’m a whiz with medical terminology, so reading it was a breeze, and I luckily didn’t run into any parked cars (I’m not certain if this sentence has facetious intent or not). I’m sure I was a sight to see not bothering to watch where I was going!

As you’ve probably guessed by now, I DID manage to find my envelope of information and paperwork from the Diabetes Institute of Immunology and Transplantation. It thankfully was all neatly in it’s original envelope, just waiting for me to get off my rocker and start working on putting it all together. Whenever I get the information the transplant coordinator is sending me I suppose I will just have extras. I’m thinking I am going to get a binder to help me track all of this stuff. There is so much paperwork it is unfreakinbelievable!

Monday, October 09, 2006

A Short Talk and One Decision Later

The transplant coordinator from DRI called me today. Since August I have been postponing the process of collecting blood sugars, hypoglycemic reports, and medical records from my doctors in hopes of qualifying for an islet transplant trial. She had called to help me make some difficult decisions concerning the direction I want to go while completing my application for the islet transplant.

I had talked some with my current doctor back in August about wanting to try for an islet transplant because of my problems with lows and my ability to sense them until I am much too low for my own comfort. Her feelings on the matter were that if I was having so many problems with hypoglycemic reduced awareness, we needed to stop the symlin. I understand and understood then that reduced hypoglycemic awareness is a contraindication of symlin use, but I was not ready to stop. Now, after 10 months of use, repeated problems and voluntary reduction of use to only once per day, I believe I am finally ready to stop symlin. I am also ready to start moving forward and trying for this transplant. I talked about this in depth today with the transplant coordinator and she was very understanding. She told me that she has another patient who is on symlin and is in the stage where she is gathering information. She told me that I don’t need to stop taking the symlin as far as they are concerned unless I make it through the final loops and actually qualify for this trial. This means I can continue to take the symlin in the morning, my most difficult meal concerning PP highs. I’m also at the point that if my doctor feels she needs to d/c my symlin, I can be okay with that as well.

This is a time of new beginnings in my health care. November I will start to see a new physician at the IDC in the cities. I’m hoping to use my problems with hypoglycemia as a card to help get a CGMS system covered. Heck, they already cover 1,350 test strips per month because of my problems with lows. My insurance might actually SAVE money with a CGMS system. I’m also hoping to find support in the endocrine team at the IDC as I pursue an islet transplant.

The transplant coordinator is going to mail me out new paperwork. I have the old paperwork somewhere but I can’t say I know exactly where or in what repair it is in. I don’t know if this path will lead anywhere. I may get kicked out for many different clinical reasons, but so far so good and unless I do this additional work, I’ll never know.

I can’t talk for anyone else about whether or not pursuing an islet transplant is good for them. I know that I personally have spent a long time evaluating the risks and benefits, knowing full well that even if I do finally qualify for this, it may just be a fix for a few short years, if it even works at all. That’s pretty scary. All of this is pretty scary, but it is exciting too, and one day, at least I can say I tried, even if it doesn’t amount to anything.

After, all you can do is do your best, try your best, make the best out of all of the gifts in life you have been given.

Sunday, October 08, 2006

My Adventures in Food - The last two weeks revisited

Man oh man have I eaten some good food these past couple of weeks! I'd like to try to get up a post about food every week, but with illness being my fond friend these past few weeks, I've run a bit behind. But I have been taking pictures! I've also discovered an awesome snack food that doesn't cause my blood sugars to reach for the stars. Over the past couple of weeks I have been taking my symlin less and less. I find that if my blood sugar is under 100 that it will tend to cause a low, and more and more symlin is my partner for breakfast only. It just seems to me like there are instances where symlin really is necessary to help achieve the more normal sugars I like, but that in most instances, I eat fairly appropriate carbs for my body and my digestion is slow enough that I'm not really needing the symlin like I thought I would.

This awesome snack food I found is soy chips. I know it sounds pretty gross, and at 4 bucks a bag, this stuff it NOT cheap! It also isn't low calorie at about 150 cals for 20 chips. Damn! is it tasty though! It runs at about 5 grams of carbs per serving and is seasoned really tastily. I encourage you to give it a try if your pocketbook can absorb the expense, as this is sure to be something you'll want to buy again.

As I've been using symlin less and less, I've noticed some things about my digestive patterns. I digest food much faster in the morning, and much much slower in the evening. That means I can safely eat some higher glycemic index foods at night without shooting for the moon with my sugars. The problem is, though, eventually this food does digest, and I'm looking at around 3 to 4 hours after I eat my dinner or snack, I'm having a high blood sugar (but not as high as it would be in the morning with the same meal!). That means that although I like the carbs, I've been trying to cut those back at night for snacks and dinner as well. For dinner I've tried things like pork w/ bbq sauce. This bbq sauce is an organic blend I bought from the coop, I really don't know the name of it, but it is limited in the amount of sugars in it so it isn't like eating candy on your meat. Fairly tasty. I also have pictured the Men's Bread I so love, which is 5 g. of carbs per slice (and like 7 grams of fiber!) Makes for a tasty meal!

I've been doing pretty good with managing that later spike with my dinners, but for snacks I've had to ditch my lovely oatmeal and heavy carb laden snacks so I've been trying stuff like this ezekiel 4:9 tortilla with scrambled eggs that are mixed with cottage cheese. Low carb, and doesn't spike my blood sugars quite as bad later at night when everything catches up to me. Keeps me regular too! You probably don't need to know that though! Good thing about these Ezekiel 4:9 products is that they are flour free, very low in carbs, and are absorbed slowly and consistently by your body. This makes for an easy slow change in blood sugars!

Lastly, I made some cookies. Because I LOVE cookies! These are five grain cookies sweetened not with sugar but with pure maple syrup (best thing ever!) and lots of cinnamon....So tasty!

Saturday, October 07, 2006

I'm Not Very Healthy

That is what a coworker said to me the other day. It is hard to explain the frustrations and anger her saying this invoked.

I know I have been sick a lot lately. First the bronchitis, then the kidney infection, then my icky opportunistic fathead cold. I know that every year I seem to pick up a few illnesses here and there. One day her and I were joking that we could categorize each month of the year by my illnesses and injuries. There was the month that my blister morphed into cellulitis. There was the sacral iliac joint sprain. There was the OTHER kidney infection. There was the month and a half I spent in fear after my first breast biopsy where the doctor had told me at the outset that she believed it may be malignant. There was the cervical biopsy (several of them) to examine pre-cancerous tissue in my cervix to help determine what route we needed to take with that. Let's not even MENTION the knee injury.....This is all within the past YEAR, and I haven't even mentioned the bouts with the flu and occasional sinus infection! I know why she would say I'm not healthy. I know why other people would think that. But it just makes me sad.....

I eat better and I make more informed choices about what I eat than most people I know. I understand nutrition and how the body metabolically works better than most people I know. If someone in the office has a question concerning nutrition or exercise, my cubicle is a likely stop for quick info. I work really really hard to be as healthy as I possibly can be, but somehow I have failed.

Have I failed? Am I just predisposed to illnesses because of my diabetes? I know I'm not predisposed to sacral iliac joint sprains because of my diabetes! What about my cancer scares? The frequent cancer scares? Why do I have so many lumps, bumps, and moles that freak doctors (AND ME!) out? What should I follow up on? What should I ignore? Am I sicker than most other people? Or am I just more in tune with what is going on with my body? Or do I just see doctors a lot more and have more chances for them to be concerned than other people?

Do I need to change my perspective? Aside from all my illnesses and injuries in the past year, I have also run about 300 miles per quarter (give or take, some quarters are much more, some or much less), which translates into approximatley 1,200 miles run in the past year. HOLY SHIT! Okay, I'm feeling a little better. In lieu of all my injuries and illnesses, I've also worked two jobs, maintained a household and a relationship, started one child in school and got another potty trained (with Bob's help of course). I also learned to cook more than one meal, and I can guarantee that I can tastefully cook any fish in about 15 minutes. I have spent countless hours learning to maintain the nutritional health of my family and I have watched in joy and wonder as my children jumped for joy to have a treat.....of GRAPES AND YOGURT!

I suppose in the past year of illness and injury, while challening in their number and frequency, I have also accomplished quite a bit. How can I feel so physically impaired at times, but still have the energy and wherewithall to push through and still accomplish wonderful things in my life and my family's life? I read a comment on one blog about how perhaps how we feel about our diabetes is all in our perspective. I think that goes for a lot of things, not just our diabetes. Our perspective is going to define what we are capable of accomplishing. I may be challeneged by an array of illnesses and injuries, but despite the numerous copays and doctor's appointments, I manage to live a pretty damn fulfilling and awesome life!

Friday, October 06, 2006

A little more about me

I've resisted but I've never been good at bucking peer pressure, so here ya go!

1. Do you still have tonsils?
Yep, and I'm reminded of that fact at least once a year.

2. Would you bungee jump?
Absolutely not. I went to a water park once that has those near vertical slides. I was scared to DEATH to go down this thing, but did anyway. I was so terrified I almost passed out going down it. Once I got to the bottom, my bathing suit bottom was now my bathing suit top, and my top, where did that go?

3. If You Could Do Anything In The World For A Living What Would It Be?
Something that requires very, very little time and whose pay is inversely proportionate to the amount I time I spend working

4. How many tattoos do you have?
one, a homemade DK (for dead kennedy's) on my right upper arm. It really doesn't count though, most people assume it is pen on my arm. Red pen.

5. Your favorite fictional animal?
haha, a Liger

6. One person that never fails to make you laugh?

7. Do you consider yourself well organized?
I am anal and organized to the point of despair for everyone close to me. My organization needs a techo-tweak though, I write everything down on paper. You should see my's very organized but the notebook thing is almost embarrassing

8. Any Addictions?
I've actually been to chemical dependency treatment for fentanyl and benzodiazepines. Maybe some day I will elaborate more on that.

9. From what news source do you receive the bulk of your news?
News? What the hell is news? I'm completely out of the loop on this one.

10. Would you rather go to a carnival or circus?
Neither, please take my ticket. I'd much rather stay in and read. Or sleep. Or run. Anything.

11. When you were twelve years old, what did you want to be when you grew up?
Either an Engineer or a Lawyer. That worked out well.

12. Best Movie You've Seen This Year?
Lil' Miss Sunshine, it was hilarious.

13.Favorite alcoholic drink
A glass of dry red wine

14. What is the first thing you do when you wake up in the morning?
Wake up my kids.

15. Siblings?
I have two older sisters, one is 33, the other is 32. I have a younger step-sister who is um, younger than me. I have a half-sister who is seven, and I have a half-brother who is five. That means my son has an uncle that is YOUNGER than him.

16. What is the best thing about your job?
I write for a living! haha, just kidding, I mean, I do write for a living, but it is technical writing so it really doesn't count. I draw for a living, too. It is extremely low key, no pressure, punch in, punch out, work 40 hours or 10 hours of overtime we don't care kind of job. It is great.

17. Have you ever gone to therapy?
um, ya, I was forced to and I hated every stinkin minute of it.

18. If you could have one super power what would it be?
I don't want any super powers, but i wouldn't mind having an unlimited supply of patience, and a little more of tolerance and understanding. Things I feel I lack when times feel too busy or stressful.

19. Do you own any furniture from Ikea?
nope, I don't even know what ikea is.

20. Have you ever gone camping?
of course I've gone camping! What is wrong with you?

21. Gas prices! First thought?
This whole thing pisses me off.

22. Your favorite cartoon character?
Um, I really don't think I have one.

23. What was your first car?
1987 Plymouth Sundance 2dr with Turbo

24. Do you think marriage is an outdated ritual?
I would love to be married. BOB? DID YOU READ THIS???!!! haha, not too subtle I know.

25. The Cosby Show or the Simpsons?
neither, Im so tired of tv, charter pisses me off, it has ruined tv FOREVER.

26. Do you go to church?
I should, but I haven't this year....I'm so ashamed.....I'm a pastor's daughter too...

27. What famous person would you like to have dinner with?

28. What errand/chore do you despise?

29. First thought when the alarm went off this morning?

30. Last time you puked from drinking?
I dont even remember, a long time ago

31. What is your heritage?
Polish and Norwegian

32. Favorite flower?
I don't have one.

33. Disney or Warner Bros?
I don't like either

34. What is your best childhood memory?
I have a funny childhood memory, when I was walking with my dad at the golf course across the street from my Grandma's he starts gagging and spitting. I asked him what was wrong and he says " I just swallowed a JUNE BUG!" I didn't know what a june bug was then. We were visiting Minnesota but we lived in Santa Fe, NM. I learned much later in life, and I laughed and laughed and laughed at his expense.

35. Your favorite potato chip?
I like soy chips. Im not much on potato anything.

36. What is your favorite candy?
I love cookies.

37. Do you burn or tan?
I burn, then peel, then freckle

38. Astrological sign?

39. Do you own a gun?
Of course I don't.

40. What do you think of hot dogs?

Thursday, October 05, 2006

My Blood Sugars Have Been Terrible!

My blood sugars have been terrible. Take a glance at yesterday’s numbers. ICK. It seems as though the only in-range number I have is um, ONE. I also forgot to put new test strips in my bag, so I actually ran out of strips at work. I have REALLY been trying with my blood sugars lately, but honestly, when I am sick I just care less and less as what I do affects less and less.

I picked up an opportunistic cold while down with my kidney infection. The past month has been really rough concerning illnesses and the close relationship I’m having with them. I’ve really been working on my intimacy factors with augmentin and most recently levaquin. Excuse me while I hack ……..

Unfortunately those wonderful drugs will help my ailing lungs and kidney inflammation, but they know buggerboo about how to kick the common cold. In the mean time, I’m spending more time high than I have since college (more than likely in two different senses of the word!).

I also haven’t exercised much this week. I KNOW that I am sick and skipping the intense exercise routine Sunday through Thursday this week is totally acceptable, but damn……I HATE being sick….

Tuesday, October 03, 2006

Lil' Swimmers and Pull Ups are NOT Created Equal!

Just in case you are ever tempted to try swapping the two out, it isn't worth it!

I ran out of pull-ups for Gracie for nights about a week ago. I, not wanting to mess up that weeks budget with an additional unexpected eight dollar expense, decided to use my remaining Lil' Swimmers to do the job instead. BAD IDEA!

Apparently, these things do fairly well with holding stool inside the diaper, but urine, not so good. In fact, it is just like they wet their pants when they pee in these things. The pee just goes straight through. How does that make you feel about swimming with all those babies eh? Does it make ya think twice?

Gracie woke me up in the middle of the night last night with "Mom! I'm all wet!" Sure enough, she was all wet. I guess that explains that nasty butt rash that popped up in the past couple of days!

Lesson Learned: Don't ever use Lil' Swimmers instead of Pull Ups!

Monday, October 02, 2006

The Relationship I Pay for.....My Doctor and Me!

What do you expect from your doctor? How do you expect that relationship to intertwine with and affect your diabetes? What do you expect from your doctor's nurses, diabetes educators, and nutritionists? Do you have a clear idea of what you expect? Do THEY have a clear idea of your expectations? How do you communicate your needs to your endocrine team? How do they communicate their needs to you? Overall, are you getting what you are PAYING FOR?

I expect my doctor and her team to help me reach my goals as they pertain to diabetes. I expect to have open lines of communication, as needed, with their entire team. I expect to deal with one person in diabetes education CONSISTENTLY. How do I achieve this? Is it even POSSIBLE?

Sometimes I feel like it isn't. I've been my own personal diabetes care manager for over fifteen years now, and sometimes, it just seems like those lines of communication get crossed. First off, when I started at this, it didn't feel like there were ANY real lines of communication at all. I went into the doctor, they told me my a1c results from 3 months ago, they reviewed what sugars I had managed to jot down, sent me off for blood work, and that was that. I felt as though they had done me a favor to honor me with their assistance in helping me manage my diabetes. I did not view their care as a service I was paying for. I did not know and understand that as a patient with a chronic condition, I really am my one and only patient advocate and only I can ensure that I get my questions concerning my condition answered adequately. Then again, at that time I was only 13, and boy did I have a lot to learn!

I believe that the first step towards getting what you need from your endocrine team is clearly understanding what it is you want and need from them yourself. How do you do that? I made a list. I wrote down everything I wanted, needed, and expected from my endocrine team. What sort of things were on that list? I want reasonable flexibility with appointments. Any working human would want this! I wanted an actual TEAM of medical folk to work on my case. That means I want an endocrinologist, a diabetes educator who works specifically with that doctor, a general nurse that works specifically with my doctor, and a nutritionist who works specifically with that doctor. I wanted all of these people appointed to my care, and I wanted their NAMES and their PHONE NUMBERS. If possible, I wanted their EMAIL ADDRESSES. I wanted to have clear goals written up that were designed to help me overcome each of my difficulties with my diabetes. I wanted to work with ONE doctor, ONE nurse, ONE nutritionist, and ONE diabetes educator. If she is not available, unless I'm dying, I will WAIT until she IS available. I cannot STAND working with three different people in three different weeks. How can they effectively help me and the complexity of a pump, basals, exercise, etc...if I work with a different person weekly?

Once I clearly understood what I wanted, I needed to find a way to communicate with my endocrine team. I took that list that I made, and I took it one step further. I outlined very clearly (almost like a job description) exactly what I expected from each one of them. I then took the time, either on the phone or in the doctor's office, to talk to each person on my team to find out what I would need to do to achieve those expectations. I think it is CRITICAL to tell your team what you need from them, because if you don't, they are on cookie cutter overdrive, and what they give to ten other people that day who all have completely different quirks in their care and diabetes, they will give to you. It meets the in and out standards of today's health care, but does it really provide you with what you need? This also opens up the doors of communication. I know that sounds cliche, but if you tell your doctor/CDE/nurse your expectations of them and you don't know how to best work with them to meet those expectations, you really aren't working as a team. They are very busy, you are very busy. Pull all of your resources together and find the best way to get things done. When I sat down with my CDE recently, I discussed how FRUSTRATED I was that I always had to work with a different CDE at the office and how that doesn't meet my needs. In this conversation we worked out how to communicate to the entire office how I deal only with her, but something else came out. She told me that the charts and logs I kept made it very hard for her to look at them and see trends. We talked about a few different ways that I could present information to her, and I incorporated that into what I currently do. Sitting down with her to discuss my needs in my treatment allowed her to tell me what she needed from me. We both benefitted and left knowing that we were making the other person's job easier AND we were improving my care.

The next part of this is making sure I get my questions answered when I actually go and see the doctor! I visit my doctor once every 12 weeks. Inbetween my visits, I don't talk to her. She doesn't even look at my sugars! My CDE is actually the person who reviews my sugars and helps suggest changes. There are some questions though, that my CDE just can't answer. For these questions I make a list (another list I know!). I carry this list around with me in my purse (I know about all of your diabetic bags, EVERYONE has some kind of purse, even the boys, but they call them backpacks I think!), and whenever I think of something I jot it down before I forget. In the nights before I go into the doctor, I write up a synopsis of my care in the past 12 weeks, information on basals and boluses, and how they work with the symlin and with exercise, any illnesses I've had in the previous 12 weeks, any dietary changes, any new diagnoses, and any new meds (among anything else I can think of.) At the end of this I list all of my questions. I print this out for myself, I print one for my doctor, and then I FAX one to my doctor a few days before my appointment. Sound crazy? I don't think so! I want my doctor to be thinking about me before I come in. I want my doctor to review this and be READY for me, so that we can spend the time I have at her clinic talking about the problems I have and possible solutions, rather than her scrambling to look over my sugars while she is sitting next to me.

The last thing I do to address reaching my goals in diabetes is actually writing down what my goals are. I think, that just like any goal, this needs to be done. I don't make myself hard diabetes goals, just little ones I feel like I can achieve with the help of my doctor and her team. I may make a nutrition goal combined with a basal/bolus goal, or even an a1c goal. My last set of goals were:
1. Eliminate most of my daytime and evening lows.
2. Test afternoon and evening basals to help control evening highs.
I actually wrote up these goals with my doctor and then after we agreed that those were appropriate goals that addressed the most pressing issues I was having, I faxed one to my nutritionist and one to my CDE. I even provided one to my doctor.

Even with all of this extra time put into organizing my care with my endocrine team, there are still times when I am not happy with my care. At this point, I have decided to try a new endocrine team, because I feel as though my current endocrinologist is not going to help me realize my goal to have a CGMS system. I believe that we NEED to be assertive in helping to realize our own care goals. If you suspect you aren't getting what you need from your team, then I guarantee you AREN'T. Never forget that this is a relationship, meaning that information is going from you to your doctor and back to you. Your doctor's help means NOTHING if it does not take into account the information you provide to them, or if they do not have an effective way to communicate with you. Finding a way to work with your team that helps them and helps you is a hard thing! I believe that health care today is not treated as a consumer industry, but it needs to be! If you aren't getting what you need after consistently attempting to increase communication and get your needs addressed, GO TO A DIFFERENT DOCTOR! FIND A DIFFERENT TEAM! We only get one life to get the best care we can, don't lose your one chance!

Sunday, October 01, 2006

Learning to Read (and other Childhood Endeavors)....

Do you remember learning to read? Do you remember it being difficult, challenging, confusing? It seems to me, that at age 28, I have forgotten the intricasies involved in learning to read. I mean, it makes sense that it would be hard. First you have to learn all of these letters. Then you have to learn that each letter actually represents a sound. And not only does each letter represent a sound, some letters sound the same, and some really don't have a definitive sound at all. AAACCCKKKK! Then you add into all of it the complexity of a word. A word is made up of all these sounds which are represented by letters but the word, in and of itself, represents something entirely different. Mind boggling! (Hats off to all teachers who teach our children how to read, I don't know how you do it!)

Anyhow, my six year old is in kidnergarten and learning how to read. He struggles with it. We work on it EVERY DAY. We work on sounds and sight words and "sounding it out" and it is REALLY STINKING HARD. And you know what? I don't remember it ever being this hard. Is it because I have just forgotten how hard it is? Or was it just easier for me than it is for my son? I don't know the answer to that question! But I am living (re-living and living for the first time) the difficulties of learning to read, all over again!

My daughter spent a long time in the heights of her bunk bed for slamming the door today. She is so full of unleashed energy at times, I wonder where she gets it from? She certainly is unbridled in her excitement and passions!

I have a kidney infection. It seems as though whenever I am sick, the only things I can stomach to eat are sweet sweet carbs delicious simple white carbs. Today I ate 3 cookies and an ice cream bar. My blood sugars have been very reactive. I woke up this morning at like 274. I felt TERRIBLE. I knew at this time that the terrible pain in my back was more than likely a bit more than a muscle pull.

Does anyone else freak out if anything is going on with their kidney? I have anaphylactic allergic reactions to -iprol medications, so I know that once I start spilling protein, I won't have that medication option. That scares me. It also scares me because I know I have extensive scarring on my right kidney and ureter from when my appendix burst. Kidney pain is rather scary to me.

The doctor today at urgent care sat down with me and went over my lab results. My protein and creatinine levels are right on, right in target range, not too high and not too low, right in the middle. That lended me some relief, but I am still worried about my kidney. My previous problems with my kidney I had so much pain and never had infection, and I wonder if I somehow have developed a ureter stricture because of the scarring on my ureter. I guess I have a lot on my mind.....

I "remember" the implications of complications at times like these. Times when I'm not well enough to do the things I want to do. Times when I can't look inside and verify on my own that everything is a-ok. I guess it is times like these where I really need to put my trust in God, because at this point, there isnt too much I can do about it!