Chicago Marathon 2012

Chicago Marathon 2012
You Can Still Run For A Cause!

Monday, March 31, 2008

20 years ago

Be forewarned, the following is in no way diabetes related.

20 years ago I lived in this tiny podunk town in mid-Michigan. I moved there from Detroit. It was a huge, huge culture shock. The first week I lived there I decided to drive around and find the rest of the town because there just had to be more of it somewhere, right? wrong. There was corn and alfalfa and more corn and a few cows.

That day I was driving around I saw a man I like to call Jethro Tull Guy because he was wearing this tan shirt that said, you guessed it. Jethro Tull. He had a skinny white guy afro and holes in his jeans. He looked like something straight out of 1976. I thought "sweet!" and chuckled.

The following week I saw him again, Same hair, same jeans, same shirt. And then I saw him the next day, and the next. You get the idea. Every day in Podunkville mid-Michigan Jethro Tull guy walked to where ever about the time I was driving to Anthropology 101 at MSU.

Well yesterday we had a job outside of Podunkville. I haven't been there since we moved say 18 years ago and guess who I saw. Jethro Tull guy, same hair. same jeans, same shirt at the townie coffee shop. The same coffee shop I used to get my coffee at before my commute to school.

It was like stepping back in time.

Amazing how some places never change.

Wednesday, March 26, 2008

6 word memoir.

I was tagged by Christine-Megan over at Nothing Is Sound.

Game play is as follows:

1. Write your own 6 word memoir
2. Post it on your blog and include a visual illustration if you'd like
3. Link to the person that tagged you in your post and to this original post if possible so we can track it as it travels across the blogosphere
4. Tag 5 more blogs with links
5. And don't forget to leave a comment on the tagged blogs with an invitation to play!

so here goes:

1 birds making me forget diabetes

2. See above picture.

3. see above link

4 and 5. I don't really know 5 other bloggers that haven't already been tagged. so if you want to play along. please do and let me know so I can read yours.

ok my 6 word memoir is lame. but there's a theme in my life and feathers make me happy. :)


After reading this article, I just wanted to cry.

When I was her age my neighbors prayed over me to "cure" me of my diabetes and then blamed me and my parents for not having enough faith. My mother told me god gave us doctors and insulin and ignoring that is as much of a "sin" as "not having enough faith".

Hopefully some other child's parents will come to the same conclusion before their child suffers the same horrible fate as Madeline.

That poor child.

Sunday, March 23, 2008

Yay Spring!

Happy Happy!

Merry Ostara, Happy Easter, Yay Passover and all that jazz.

Whatever you happen to celebrate have a good one.

I'm just glad spring has officially sprung, even if there's still snow on the ground.

Friday, March 21, 2008

Sexy Sexy!

Butter is my male normal budgie. I say normal in that he's the color of budgies in the wild. All of the other birds love him and the girls in particular are smitten. I never knew why.

Apparently being well endowed with blue cheek spots and blue tail feathers is the reason.

He's just a sexy sexy bird!

btw, we're still waiting for eggs. Girl bird is busy nesting.

I love PBS and youtube. yay!

Tuesday, March 18, 2008

Pre-Transplant Testing

September, 2005 I went to Chicago and met with Dr. Endocrinology, TCNE and briefly met Dr. Transplant. I watched riveting power point presentations about the horrors of what could, might, but probably wasn't going to happen if I had the islet transplant and took immuno suppression drugs. I listened to both sides of the bargain. Things like "you come visit us X number of times for the next 18 months, take these meds, follow up with these tests, let us jab with iv's and draw blood until you realize "holey crap! all of those tubeys are for me??!", and we'll give you islets if you qualify, and provide the best durned health care you can imagine (my words, not theirs).


I signed and dated on the dotted line.

Then the fun started. I came back in October for blood work (see above "holey crap! comment"). and again for things like ultrasounds, ct scan of various innards and some glucose tolerance testing. Mmmmmm. not. They did a Glucagon stimulation test to measure c-peptides and see just how pathetic my pancreas really was and the nurses all sat there and stared at me waiting for me to puke. Man, I hate glucagon, every single time I use it I sell the buick and puking back then brought me to tears, so that by far for me, was the worst of the pre-transplant testing.

Not long after the initial batch of tests I got a request for a 2nd abdominal ultra sound so they could take a better gander at my backwardiness and peek again at my liver. My liver it tured out had some tumory bits that needed reexamining so I trucked back to Chicago (its a 5hr drive btw) and laid on the table while Dr. Radiology and his crew of student doctor gonnabes goo'd me up, looked at my liver and searched for my elusive spleens (a fun game for radiology tech and patient alike. It usually ends with me saying something along the lines of "are you looking for my spleens? would you like to to point at where they are?" and me pointing to a totally different spot then Radiology Tech was looking.) anyway, My tumery bits didn't behave well under ultrasound so they said I needed a needle biopsy to rule out cancer.

By this time it was January or February, 2006, I got to spend the night on the liver floor and get jabbed with a giant needle. It was all good. hemangioma type tumor. Benign. And a week or so later they said the translant was a go.

Now let me tell you, up until this point I was certain *something* was going to prevent me from qualifying for the transplant. There were so many times that they called and said "oh hey, come back, more tests!", and I had a number of "well, I've got this going on too's" that I kept waiting for them to say "go away, you're too goofy for us". But they didn't.

And then came the wait. Three months later I was working a rare (rare because I usually work at 4am) evening shift and my phone rang. It was TCNE trying to tell me to get my booty to Chicago within the next 6 hours and I hung up on her! After I called back, I told work I was leaving, called my partner and we left. We got to the hospital in 4hrs.

What I remember most about the drive was the splendor and stench of Gary, Indiana at 1am. If you've ever driven through Gary in the day time you get the "stench" part (in the following months I'd learn to close the car vents and stick my face in a pillow long before we approached the town), but its worse at night. At night, Gary's industry is lit. Every factory it seemed was spewing flames and smoke from pipes jutting into the sky. Pyres of pollution across a cityscape. That is what I remember most vividly from that night almost two years ago.

When we arrived at UIC's medical center, we went in through the emergency department to registration, registered and I was sent up to the transplant floor for the usual pre-surgery prep. I had ivs put in, blood drawn to cross match tissue types with the donor cells, they must have asked 100 medical history type questions and then I waited to be wheeled away.

I'd say I was nervous but that's not really true. I was flat out scared...

Monday, March 17, 2008

Pooooor little green bird!

Because my living room is flipping freezing 24/7 no matter how warm the rest of my home is and I really really wanted to hang out and just watch tv today, I dragged out my sleeping bag. grabbed the bird and set up camp.

Tv was boring as usual and the bird was warm and fuzzy and we both fell asleep like morons in the middle of the floor. I woke up a short while later, couldn't find the bird, which usually means he's headed back to his cage.

but no, he wasn't there.

he wasn't on his play gym.

or hanging out in my pot of chives.

or any of his usual spots. so I started to get worried. I looked and looked and looked and then I heard it. Grrrrrrrrrr, rrrrrrrrrrrr, rrrrrr. little bird growlings in the bottom of the sleeping bag.

He was trapped, squashed by heavy blankets, ruffled, nippy and totally annoyed with me when I finally dragged his little bird butt out of the bottom of the bag.


I'm a bad bad parent and its rough being a little green bird.

Sunday, March 16, 2008

Pre Pre-Transplant

In response to requests for more detailed information about the whole islet transplant experinece I decided to write in installments so I don't bore myself , and anyone that might happen upon my blog, to tears.

Ih, I should have been doing this all along, but alas I never figured on anyone outside of, well, myself and a few of my dorky diabetic friends being interested, so I failed to keep written accounts of the months leading up to and the two years after my transplant and here I am trying to remember it as it all played out. Wish me luck on accuracy and all that jazz. I'll do my best.

Names have been changed to protect the innocent.

I'm not going to sugar coat it. This is what happened as best I remember it. If you're interested in islet transplantation keep in mind that if we don't see the ugly side of life we can't appreciate the not so ugly right? It wasn't easy. It was expensive. I experienced pain and a whole lot of barfing and in the end it was still worth it.

Anyway enough rambling, here goes...

About a year and a half before I had my transplant I was doing what I do best and that was researching random interests on the inter tube webby thingummy. At that time my current obsession was the Edmonton Protocol and islet transplants. I was interested specifically in how the heck they managed to isolate the beta cells of the pancreas with out destroying them. Anywho, I came across this website that is sadly now defunt (btw diabetesportal people please please come back! I miss your wealth of information). Said website had a list of centers in the US that had islet transplant studies underway and a registry to fill out if you wanted one of them to contact you. yeah yeah, i'm a sucker for online forms and other such cheep marketing ploys so I filled it out thinking I might get emails and I might be able to ask questions about the whole protocol thing. boy did I get email!

Among emails from other peoples regarding transplants, UIC's Transplant Co0rdinator/Nurse Extraordinaire (hence forth know as TCNE) emailed me and wanted to know if I was still interested in islet transplant sudy. I was only I didnt think I would really qualify because I have situs inversus of the abdomen or more accurately situs ambiguous with poly splenia syndrome. Basically, my momma birthed a mutant with backwardly innards and too many spleens. I was certain they wouldn't be able to do the procedure but wanted their information anyway tyvm. Well, TCNE emailed me back and said situs backwardus was no big deal and did I want to move forward please call. So I did and the conversation went something like this:

TCNE: what type of diabetes do you have?
ME: um type 1?
TCNE: how long?
ME(counting on fingers):25yrs
TCNE:how much you weigh?
TCNE: how much insulin you take?
ME:um, varies, around 35units a day
TCNE: do you have lows and how often?
ME: (thinking, aren't lows normal?)yeah, 3-5x a week.
TCNE: good (me thinking 'good??') do you have symptoms?
ME:not really, sometimes, but not usually
TCNE:how do you know you're low?
ME:I test my blood sugar?
TCNE:ever need help when you're low, go to the er or use glucagon?
TCNE: good(again me????)

so it went on like that for a few minutes with her being more eloquent then I just gave her credit for and me being generally confused by her "goods", which I now understand meant I, at that point hadn't been excluded from the study.

She then said I looked like I might be a good candidate and could she send me more information and some forms to fill out. (information??? forms!!) Yes, thank you!

So I got my information and form and procrastinated in getting them filled out for a couple of months until TCNE finally called and asked if I were still interested. Sometime around June 2005 I faxed the forms back and got a call saying I looked like a good candidate except that I had a history of pancreatitis and would I see one of the doctors in Chicago in order to get clearance for the procedure. Hrm, okay. So I did, he said no problem go ahead and eventually we made an appointment to meet Dr Endo with the islet study to talk about it more in person. That happened in September 2005.

come back tomorrow or the next day and I'll tell you all the riveting story of blood work and tests and the slide show I got to watch! woo fun! meanwhile I have laundry and a small green bird begging for attention so I'll have to get to the rest of the story later...

Saturday, March 15, 2008

Why Bother Testing?

prompted by a blog I was referred to by, well, someone else, I started thinking why bother testing at all?

I'm not on insulin.
I don't take oral diabetes meds.
I'm not adjusting any medications based on said tests,
My last A1c was 6.0 or something along that line.
I hardly even qualify as diabetic anymore.

According to that criteria and the above blog I should only be testing once every few days.

So why bother?


My doctors have asked me to. (good enough reason for me, if I don't they too will call me non-compliant, not just my pharmacist that really knows little about me other then I'm diabetic and I've stopped taking my diabetes medicines for some reason.)

I like to know if the foods I eat have effected my blood sugar in a drastic or not so drastic manner. I can't always tell ya know, sometimes even the non diabetically challenged get thirsty. I know, I know novel concept but its true! I was so surprised the first time I thought to myself "self, you're thirsty, you must have an elevated blood sugar level for sure" and I was sadly euglycemic. I say sadly because, well I wasted a finger poke for nothing?! wait, nothing? no I got the reassurance that indeed my newly procured islets were functional. yay!

oh back to my list

I like to know how exercise effects my blood sugar because on rare occasions if I exercise with my blood sugar at low-normal range I actually, go low-low. like say under 55 low. How do I know this? Well, 1 I test before exercise (more wasted strips?) and 2. I test after exercise (waste waste waste!)

and testing may effect my behavior in the future. like say, I know now that I can eat two slices of pizza with out my blood sugar going over 200 but dang, eat three and I'm doomed. So, now that I know this because I've tested my blood sugar more then twice a week, I will eat one or two slices and supplement my dinner with a salad. smartness out of someone not on insulin, wow.

When I quit purchasing my insulin through the pharmacy I usually use my pharmacist did ask me if I were getting my insulin else where (good question) and I told her no, I was off insulin and told her why. Now, I also work with said pharmacist so I get more chance to talk to her then most customers get to talk to their pharmasists but still SHE asked the right question imo.

My point here boys and girls is, not every pharmacist knows whats going on in their customers' lives, why they take the meds they take or dont take and in the case of diabetical customers why they test as often as they do and quite frankly its not their business, unless there are serious interactions or contraindications for said drugs.

So back to my question.

Should I bother? yeah, because if I don't who's going to tell me when my blood sugars start going up and I might need to have a medication change? Who's going to tell me what foods to avoid? How much exercise to get? When to call my doctor for advice? Certainly, not my pharmacist.

and on that it's 2hrs post prandial and its time for me to stab my finger and waste yet another strip....

Friday, March 14, 2008

Because I like it.

The Sun Never Says

Even after all this time
The sun never says to the earth,
"You owe Me."

Look what happens with
A love like that,
It lights the Whole Sky.

- From The Gift by Hafiz

Thursday, March 13, 2008

On Trains

I take the train to Chicago when I go to UIC for follow up with the islet transplant team. I love the train. There's a romance between the sound of the wheels rolling down the track and the scenery speeding by. I usually take a book, or my Zune. Sometimes I talk to other passengers, but what I like most is just staring out the window at the trees and farms and towns we pass along the way. I like that the trains take you where cars can't. I like seeing the pieces of industry and the backyards of rural America that are missed on the interstate.

I don't actually take the train the entire way to Chicago. A through train only leaves my hometown at 7am and I usually work a half day and catch the bus at 12:25 to Battle Creek, Mi where I then board Amtrak. In a way, I'm glad I take the bus for that short route because there is a 40 minute wait between bus and train and for lack of a better reason to enjoy a town, I like the smell of Battle Creek. If you've ever been there you know what i mean. The city is the home of Kellogg and smells like Pop-Tarts. Breathe deep and I feel my blood sugar rising, the scent is that thick.

I board the train and settle in, and we head west with stops at small town stations. We pass trees and country that a passenger from India once told me looked like jungle. The wheels thump and the whistle blows for cars and kids in parks. Eventually, I turn to a book or my Zune. Time passes. Things look pretty much the same and I zone out until we get near Hammond and the smell startles me back into the present.

Hammond, Indiana is like Battle Creek in that the city reeks of it's industry only in Hammond, Industry doesn't smell so sweet. By Hammond, the view has also changed and the it's gone from corn to scrap metal waste, and the folding chairs and make shift tents of the homeless subsisting along the tracks. It looks like the kind of place that photographers like to capture in black and white, but where no one really wants to live. This is the side of America that trains show you. Its not pretty, but something is beautiful about it nonetheless.

After Hammond, its more the same. Neighborhoods surrounding Chicago. community pools with kids playing nearby. buildings that look bombed out and empty and yet clearly are sill churning out some product or another. The train slows to a crawl and enters the bowels of Union Station . Passengers, already antsy, gather their belongings and queue up to depart for places unknown and I get up with them, walking through the rush and echo of the people in marble halls, out into the air and noise of the city. And suddenly I'm there and on a different wave length.

There's the march to the hotel or hostel I usually stay at and the wait in line to register. I head out to eat and wander, and then return to sleep. In the morning, I take the el to the hospital before most people are thinking about waking and that's a different kind of train all together. The el is high pitched, noisy and at 5am for the most part empty. We go around corners on the loop and sparks flash and light up windows of offices. There's a slow climb up hill, past residences, and more stops before we rush past Rush hospital and come to a screeching halt at the Polk station behind UIC.

I get off the train and wait. No matter how many times I've done it I can't walk when the train heads off and the platform rattles. My knees go weak and nausea hits if I'm moving. So people walk around me if I haven't managed to move aside before the train starts to move and I silently apologize for my inadequacies.

After my appointment, I return to Union Station, usually hours before departure and I find some corner to sit and read or watch people until the announcements begin and people start shuffling to board.

Soon, once again, I'm on the train returning home, wheels thump, whistles blow, children play with the American Dolls they've acquired on their trips, and inevitably on the way home some drunk guy complains about how long its taking and swears he'll never take Amtrak again. I *sigh* and fall asleep listening to it all.

At some point my phone will ring and it will be Transplant Co-coordinator/Nurse Extraordinaire telling me what my lab results were and what medication adjustments to make. We ride past urban spaces, rural towns, and all the places we sped past yesterday and this time the train stops in my home town. I sit and wait for other passengers to hurry up and wait to get off the train and back to their lives. I'm consistently amazed at the number of people getting off the train in Pohdunk, Mi and at the number of people waiting for them.

I climb down from the train, find my own greeter, get in the car, head home and know in three months, I'll do it all again.,,

Monday, March 10, 2008

Frustrations and Highs

tonight my blood sugar was 222 at 2hrs post prandial. I'm frustrated.

I feel so diabetical. So wanting to take insulin to bring it down to normal and in general impatient. I know it will come down on its own eventually, but that whole idea of waiting for it is very very non proactive and very unlike me.

I want perfection now! durn it!

I have islets! I want them to working like, well, islets and not lag behind like the impaired glucose tolerant little shits that they are as of late.

Pre-transplant I used to get so annoyed at people that whined about anything under 250 and now here I am whining about the occasional imperfection, but dangit I went through much to be where I'm at now, and it kind of freaks me out to think about facing transplant number two.

I keep waiting for it to happen. One of these times I'm afraid Dr. Transplant will say its time to be put back on the list and I think I'll cry.

It really wasn't fun. I can imagine it was a lot more fun then a full organ transplant would be but still, I had some complications because of my whacky anatomy (can you say situs inversus boys and girls?) and I was in large amounts of pain afterwards. I spent 9 days in icu because of a liver hematoma and I'd really like to avoid ever experiencing that again. However, that being said if/when they say I need a second islet transplant, I'll do it.

Maybe that gives some perspective on how much better I feel now then I did pre-islets? And maybe I should listen to myself and stop whining about the occasional high bs and quit stressing.

yeah, thats what I'm going to do. starting tomorrow...

maybe ;)

Sunday, March 9, 2008

Medals and Bragging Rights

My niece had her first gymnastics meet today at the ripe old age of seven. She placed in each of her events including first for floor routine. She did awesome!

She happens to be one of the coolest kids I know. The other coolest kid? Her sister. ;)

Sunday, March 2, 2008

Mouth Ulcers

Have I ever mentioned I get mouth ulcers?

I like Sirolumus/Rapamue, don't get me wrong. It's nice to my islets and for that I'll take the annoying side of it, but man I'm tired of feeling like I'm swallowing shards of glass when I eat.

I'm down to six mouth ulcers from eight. Actually, I'm down three, up one. It's the 'up one' one that's most annoying at this point. It can't be avoided. Not when talking or swallowing or breathing. It just hurts.

But I'm down five pounds. I'll be all set for bikini weather! ;)

yay for not eating.