Chicago Marathon 2012

Chicago Marathon 2012
You Can Still Run For A Cause!

Tuesday, December 4, 2007

Medical ID - Do you wear one?

I ordered a new ID bracelet today from Anyone that knows me, knows I'm a big fan of their product. I first found them about five years ago when I was searching for medical ID bracelets that were customizable and yet didn't have metal parts that would touch my skin. I've been hooked ever since! They have a new interactive ID (same idea as medic alert) and of course I had to have one!

I'm a dork what can I say? ;)

I'm often befuddled by people that don't wear medical ID's, or in general people that don't carry id with them at all. I work with a woman that lost her state ID a couple of years ago and hasn't bothered to replace it. I mean eesh! she has no medical conditions that would need prompt attention in the case of an accident or emergency but if I were her I'd be afraid I'd end up a Jane Doe with my family wondering what the heck happened to me. I think its kind of selfish to not at the very least carry some identification with you, especially if you have a chronic illness. I mean really, how hard is it? ID, meet pocket, pocket meet id.

So my challenge to you all that don't wear medical Ids or carry a medical id in your wallet, is to convince me that you have valid reason not to. and dont tell me they're ugly, there are enough beautiful and non obvious medical ids out there that I won't accept vanity as an excuse! Besides... Better ugly then dead....
Well, hey I posted one twice and couldn't figure out how to delete it so I edited instead. yayme!

Sunday, October 28, 2007

Not MY friend!

Time for one of those "back in the day" stories, boys and girls!

Back in the day (circa Jan 1980) I was diagnosed with diabetes at the ripe old age of nine. My mother, who was also type 1, recognized the symptoms, and took me to the doctor who immediately sent me to hospital where I got all kinds of fun booklets about diabetes. They all infuriated me because dang! I was NINE! ;) and they were written for idiots!

Now that I'm closer to 39 I realize that all medical booklets are written for idiots, even when they're written for grown ups. ;)

Any way, I found my favorite book from back in the day so I thought I'd scan the cover and post it. It's priceless! btw, I was never convinced that Mr. Hypo was my friend!

Sunday, October 21, 2007

Primary Care Physicians?

My transplant doctor tells me I need to see a podiatrist. Every diabetic needs to see a podiatrist regularly, an ophthalmologist, an endocrinologist, a you name it, give it a specialty and we need to be there. I'm tired of seeing specialists. What I want is to be a blissfully ignorant completely healthy never needs to see anyone but her comfy little family practice doctor once a year kind of gal. Fat chance.

Not even Fat Chance, No way Jose (which btw is my transplant doctor's name and I so badly wanted to say that when he said "you need to see a podiatrist").

So really the question floating around in my brain today is why even bother with a PCP? I have a doctor for pretty much every system of my body, every appendage, every sub system, every sneeze. I have my endocrinologist, my vitreo-retinal specialist, my cardiologist, my neuro-opthamalmologist, my orthopedic surgeon, my transplant surgeon, my ENT, my oral medicine doctor (what do i call him? i see him for post transplant immunosupression induced mouth ulcers, he's a denitst and an MD all in one but I don't know the name of his specialty, go figure. I affectionately call him Doctor mouth ulcers). So you get my point. by the time I see every other doctor on my vast list my PCP seems well, irrelevant.

Except for one reason. He makes good referrals. He's good at telling me how compicated my medical history is and sending me on my way to someone else, He bows out well. So I keep seeing him about once a year when I need a referal to some other doctor like a podiatrist or when I happen to be between specialty appoinments and need someething like antibiotics for a sinus infection. I wish I could just email him and get what I need but I can't so I go see him, my primary care physician.

When people ask me "who's your pimary care physician?" I always think "Why Dr. transplant of course!" or before transplant "Dr. Endo" but that's not what they want to hear so I say "Dr PCP" and feel like a big fat liar. Because he's not the person that primarily takes care of my health issues. He wouldn't know me as one of his patients if he saw me on the street. The last time I saw him he didn't even recognize me in his office because it had been so long since I'd been there.

I don't want a Dr. Baker ala LIttle House on the Prarie, knows everyones name, an "i delivered your grandmother, I know everyone's family history" kind of doctor. I don't want a friend with a medical degree. I just want someone that isn't afraid of my medical history. Someone that knows where I've been and isn't afraid to suggest an option other then, go see someone else. I think I want super doctor to know all do all, and I know its never going to happen but I can wish right?

I guess there's really no point to me writing this other then to vent the ramblings around in my brain so I can move on and think about calling Dr PCP tomorrow about a podiatrist, after all, he makes good referals...

Saturday, September 22, 2007

Endocrinology Day

Since I had the islet transplant in Chicago and I live in Michigan I essentially have two endocrinologists. I see the one here for my thyroid and the one in Chicago for diabetes/transplant related issues.

In 1990 I had a partial thyroidectomy because I had a follicular adenoma. Out came the left half of my thyroid. Tumor benign. All was good. And then I had the transplant and a hematoma on my liver. (can you say ouch boys and girls?) the hematoma was initially from a bleed during the transplant and then I tripped on a wire and fell on my face/stomach or as my Dr likes to say, I fell on my liver and re-injured it. Soooo, they did a ct-scan. Ok, they did many ct-scans! but this one accidentally scanned my thyroid too and caught another tumor.

January of this year I had the right half of my thyroid removed. Everyone figured it would once again be follicular adenoma, however it turned out to be papillary carcinoma. Since the tumor was small (5mm), well defined and already removed there was really nothing left to do. Diagnosed and cured all in one day! yay.

Anyway, my local endo is now managing my thyroid issues but not my diabetes. He's kind of hyper. I like the man but being in the room with him is kind of like being inside a pinball machine. I'm the bumper. He's the ball. bing bing bing bing! ieeee! Every endo I've seen has kind of been like this, including the one in Chicago. I think they're all nut jobs! Today he jumped up on the exam table with me so he could palpate my thyroid, (or lack there of) and I was like woooah, hello!

What did he have to say? Nothing really. my A1c was 6.2 (I had to fill in the little bubble on the lab sheet for that one - I wonder if my insurance company has any idea how many lab tests they've done that I've added to lab orders myself) Everything else was normal except for Vit. D. it was 22 with the lower level of normal being 30. I now get one more pill to swallow. 50,000 IU once every other week. And now I have research to do to find out what exactly vit. d deficiency is.....

Friday, September 21, 2007


I spent the last 2.5hrs skateboarding and my blood sugar is 52. I complained once that I go low when I exercise if I don't eat (guess who didn't eat today?). I think if he weren't as professional as he is my doctor would have said "Well duh!". ;) He did however say that even he'll go low if he doesn't eat when he exercises. And I thought non-diabetics were normal all of the time...

Sunday, September 9, 2007

Intro (imported from a previous blog)

I'm type 1 kinda sorta I'm not really sure anymore. Let me esplain....

I was dx'd type 1 at age 9, did the whole Nph/R regimine for years, switched to Lantus and R, Lantus and Humalog and eventually went on a pump using Novolog. A few years ago I started researching Islet transplantation and the Edmonton Protocol and decided I wanted more information on clinical trial for islet transplants. I found a website that listed centers doing transplants and registered there.

About six months later I got an email from one of the centers saying they were screening for study participants and was I still interested? Yep I was, a bunch of tests, bloodwork, paperwork and ayear later I was waiting for the call for my transplant. I got that call May 13, 2006, was transplanted on the 14th and I've been off insulin since July 14. 2006. So far so good, there were rough patches. I had some complications and a whole lot of puking from one of the medications but over all so far so good! Would I do it again? You betcha! I feel great.

My blood sugars aren't perfect. I still watch what I eat because too many carbs and I spike, but eventually it comes back down on its own. Soo. I've gone from type 1 on a pump to type 1 kinda sorta not really sure where I fit in the scheme of things but its all good. ;)

Anyone interested in islet transplants can check out The Chicago Project and The University of Illinois Medical Center at Chicago's islet transplant program . I'm happy to answer questions too, either here or through email.