Chicago Marathon 2012

Chicago Marathon 2012
You Can Still Run For A Cause!

Sunday, November 30, 2008

NaBloPoMoFoShoYo

My last mouth ulcer is gone! Yay! I've transitioned to Cellcept and I'm off Sirolimus (Rapamune), so I'm hoping the mouth ulcers are gone for good.

what, oh what shall I blog about now?

I completed NaBloPoMoFoShoYo

I'd say 30 posts in 30 days but I think a few times I posted more then once in a day.

So yeah, GoMe!

Inspired by another blog, next month look for "Mr Hypo Is My Friend". I've scanned the entire book and will post it over the month.

I have a love/hate relationship with that book.

but that boys and girls is for another day.

Happy Happy December's here!

almost.

Is It a Meme or a Youyou?

I post it, you answer the questions (put them in the comments, ja?).

From Christine

1. Who are you?
2. Are we friends?
3. Something I have and YOU want?
4. Give me a nickname and explain why you picked it.
5. Describe me in one word.
6. What was your first impression of me?
7. Do you still think that way about me now?
8. What reminds you of me?
9. If you could give me anything what would it be?
10. How well do you know me?
11. How do you see me in the future?
12. Ever wanted to tell me something but couldn’t?
13. Are you going to post this in your blog and see what I say about you?

Friday, November 28, 2008

Nakid Bird and Black Friday

I survived working opening shift on black Friday. It sounds so ominous but really the "black" part just means retailers are hoping to no longer be in the red after today. My favorite part of the day every black Friday is when I get to stand back and watch the crayZees run, quite literally, through the store because omg! they just have to have that cheapass video camera for which we'll have rain checks, if we actually run out. But it's fun. it's the one day I'm allowed to visibly laugh out loud at customers, be rude and tell people "I think it's over there, *pointing in general direction of large masses of peoples* have fun with that".

Anyway that part of my day is over. I got home from work and the Green Bird who has been doing so well with not pulling out all of his feathers was once again nakid. He left in a few flight feathers and half of a tail feather. I managed to get a very blury picture of it this time. Green Bean is the nakid bird. The head in the upper right corner is his best buddy and cagemate, Butter.



If you went shopping today I hope you managed to stay safe and not get run down by a crayzee with a shopping cart. And I hope the sales were all you dreamed of. or didn't because you got up at the asscrack of dawn.

and now, I'm going to go watch a movie with the green one.

Thursday, November 27, 2008

Wednesday, November 26, 2008

Sick kids and missing holidays

So my wish for a mouth ulcer free Thanksgiving isn't going to happen. I can deal with that. There's always next year. What makes me sad though is both of my nieces are sick with some kind of "lets puke for days" illness, so we decided to stay home.

Yes, it makes me sad to not see family for the holiday but what makes me really bummed is knowing how sick my two favorite girls are. When I talked to the younger one on the phone today she cried when I said I couldn't come over, which almost made me decide to go anyway, but after she puked and felt better we decided next week would be a fine time to visit. Kids are resilient like that and this one is particularly so. Kate is my laid back, easy going, loves everyone, happy 99.9% of the time kid. She's sweet, you can't help loving her. Her sister on the other hand is intense in a way that's hard to explain. She's my little imp. She's a pixie. It's all or nothing with her and I'm blessed be to one of those people she feels "all" about. She gets that from her aunt, and its funny 'cause my family is constantly mixing our names up. It's gotten to the point we both answer to the other person's name at family gatherings. She told me I had to come over just as soon as she and Kate were feeling better. I of course agreed. How do you say no to that?

So, we've decided to have dinner with the girls next week and forgo the whole Thanksgiving dinner this year.

Next year, we will have turkey

and no mouth ulcers.

and no sick kids!

Happy Turkeyday to all of you!

enjoy yours for me.

Tuesday, November 25, 2008

I heart islets.

Since I had my Daclizumab infusion three weeks ago I haven't really felt like eating. I'm not a good eater. I admit I have food issues, but after the infusion I just wasn't hungry. It wasn't a "food's a pain the booty, I"m not eating" kind of thing. It was just a non-issue. Tonight that seems to have changed and I think I made up for three weeks in one sitting.

Ohh the calories!

We went grocery shopping, which is always a bad thing to do on an empty stomach, much less an 'omg, I think I'd eat that tree over there right now if I could" kind of stomach. We bought a ton of food, cause did I mention I was hungry?

Lucky for me (and not so lucky for Melissa, who would live on pizza, Doritos and beer if i let her), I actually LIKE vegetables and such type foods that are good for me so we bought a lot produce. and peanuts (I've been craving peanuts all day, go figure) and we also bought some candy in the check out which I promptly stuffed in my face as soon as I got in the car. 15 minutes later we were at our favorite local diner/dive and I tested my blood sugar. 72. I'm willing to bet I was lowish before the candy considering how crazy hungry I was.

Dinner was cheddar broccoli soup and one of my favorite foods, hippie hash. Hippie hash consists of hash browns, green pepper, broccoli, tomato, onion, olives, mushrooms, feta cheese and if requested, tempeh. I requested! H.H contains a ton of carby potato goodness and to top it off I had an eggnog shake, which I'm sure contained more carbs then I've eaten in a month. Mmmm, yummy!

anyway, the whole point of this rub-it-in-your-face post? At 2hours post prandial my blood sugar is 124. I love my islets, especially when they're playing nice and doing what they're suppposed to do. I was expecting over 200 because that seems to be the way of things lately when I over do it on the carbs, but not tonight. They were perfectly behaved.

So I'm patting my self on the belly and saying "good islets, nice liver".

oh,

and

Yaytempeh!

If you haven't tried it. I recommend.

Search Engine Humor

My top 5 favorite search engine inquiries that got people to my blog this month:

5. Yayme - what is it with yayme? I have one post with it in the title and it's consistently the top keyword that finds my blog. So those of you looking for Yayme, what/who are you looking for?? It's certainly not islet transplantation.

4. Fat bird - I had no clue chicks were birds! Wait. Let me rephrase. I've never heard the term Bird used to refer to females. Chicks, yeah, Birds, no. My fat bird btw was male. :)

3. ukulele songs yay - seriously, if you google that phrase, there are thousands of hits. I don't know why they found me, but yay!. ;)

2. little green birds - how do you not love it?

and my favorite keyword/phrase that has found my blog in the last month?

1. we were gettin busy when she said what was that? - now that's just funny!

Monday, November 24, 2008

Yay Snow!

It snowed this week and in honor of winter and the up coming holiday season, watch this;



Snowblood by Marek Berger

Sunday, November 23, 2008

Chocolat

I spent the day reading this:

The Girl With No Shadow.


It's the sequel to Chocolat.



As a diabetical type person you gotta love a book that is centered around a chocolaterie!

It makes me want a mocha in a bad way.

Tomorrow.

Before work so I can exercise it off.

Have I mentioned that I love my islets today? I do.

Yayislets!

Saturday, November 22, 2008

Is It Irony?

or divine retribution for whining so stinking much?

The same day I started Cellcept I woke up with a mouth ulcer. Two days later, I have another and the first is the largest mouth ulcer I've had to date.

I know, I know. give it time.

Hopefully sans full Sirolimus dose it will resolve quickly.

I'd like a Thanksgiving without mouth ulcers this year.

Thankyouverymuch.

Friday, November 21, 2008

Random Entertainment For The Week 11/21

I have yet to bore you to tears with longboarding videos, so here goes.

It's just some pretty footwork.

Tis The Season - Holiday Meme Time

Another meme emailed to me from my friend Sandy.

If you don't do Christmas, please insert your holiday of choice and leave a link. I'd like to read your responses!

. Wrapping paper or gift bags? Paper

2. Real tree or Artificial? Artificial


3. When do you put up the tree? 2 weeks before

4. When do you take the tree down? After New Years

5. Do you like eggnog? Yum! but no rum!

6. Favorite gift received as a child? Where The Sidewalk Ends by Shel Silverstein.


7. Hardest person to buy for? My sister's husband

8. Easiest person to buy for? Mckenna (8 yr old niece)

9. Do you have a nativity scene? yes, and buddha and a menorah and a yule log. (we're equal opportunity holiday people)


10. Mail or email Christmas cards? Mail

11. Worst Christmas gift you ever received? Can't think of one. It's not the gift, its the love given with it that counts.


12. Favorite Christmas Movie? A Christmas Story

13. When do you start shopping for Christmas? About a week before.

14. Have you ever recycled a Christmas present? No

15. Favorite thing to eat at Christmas? Carrots, (I get to play reindeer and eat the carrots left out on Christmas eve after the kids go to bed, I always leave one with teeth marks) ;) Last year they didn't peel the carrots first. Yuk! lol

16. Lights on the tree? yes!

17. Favorite Christmas song? Which ever ones my nieces are singing at the moment.

18. Travel at Christmas or stay home? I'm at my sisters every year, which is as close to home as you can get with out being home.

19. Can you name all of Santa's reindeer's? Sure, I know “Rudolph the Red-Nosed Reindeer” by Gene Autry

20. Angel on the tree-top or a star? A Bird, duh.

21. Open the presents Christmas Eve or morning? The entire family gets together on Christmas eve to exchange a gift (everyone over 18 draws a name, so one gift per person) and then we do stockings and watch the kids open gifts in the morning.

22. Most annoying thing about this time of the year? Working retail, and customers that ask. "do you have this thing i'm looking for I can't remember the brand, or what it's called, it's in the ad. it's red. and round. no it's $14. I saw it at your other store...."


23. Favorite ornament theme or color? I love a tree decorated in blue and silver


24. Favorite food for Christmas dinner? We don't do Christmas dinner, but Christmas eve we have jambalaya


25. What do you want for Christmas this year? I'd like a new ukulele (Fluke, slightly larger then concert sized thankyouverymunch) but my favorite gift every year is being woken up on Christmas morning by my nieces, so really, I'd like that again this year.

Thursday, November 20, 2008

Drugs Drugs Drugs

Two weeks after I ordered it, Cellcept has finally arrived and just on time. I woke up this morning with a mouth ulcer and spent my day in general pukey-ness.

Keep your eyeballs crossed for me that Cellcept will be nice and won't cause such side effects.

Much appreciation in advance and all that!

Wednesday, November 19, 2008

Magic Coffee Mugs

I had a professor in college who claimed to be manic digressive. He said and I quote "I'm manic, and I digress, get used to it". That's all I'm saying here.

I had the day off today, so I got up at my usual 5am (Actually, that's sleeping in two hours, but I digress), and made coffee. Yum, I love coffee elixirs. After my transplant I couldn't stand the smell or taste of coffee, but I forced myself to get used to it all over again. That's just how much I like my cuppa joe.

Sooo I made coffee and got out my favorite coffee mug. I use it regularly, never had a problem with it but today when I filled my cup up and thought. "hmm, we have sugar free hot cocoa, should I add some? Naa, cup too full" and then looked down again at my cup, it was slowly emptying.

My next train of thought? "Holy crap spilled coffee + light colored carpet = huge mess!". But no, there was no spillage, which confused me, so I stared.

And watched.

And listened as my brain creaked making funny confused sound effects while I tried to figure out just what was happening as my coffee disappeared! (f.y.i The sound effects don't actually happen. I don't have audio type hallucinations or anything. Recounting it as such would just be my imagination at play trying to get across just how confused I really was).

I called Melissa over. She stared and picked the cup up. Nope no leakage. And then it stopped and my cup was now 3/4ths full instead of "omg, its too full I'll spill and once again burn myself if I take it to the dining room for breakfast, kind of full".

All I can figure is the glaze was cracked and said coffee was sucked into oblivion by the porous ceramic innards of aforementioned cup.

and I was left sad, and coffee-less.

Until I made more.

And missed the table when I reached over to set it down.

So now I have a coffee stain on my light colored carpet anyway.

I gave up on the coffee and drank a diet coke instead, because certainly it was not meant to be.

Tuesday, November 18, 2008

Excuses, excuses.

We're approaching Black Friday in retail world.

Work is slow in a "Perpared for mayhem, kind of way"

I have a very common type cold.

Nothing interesting is going on work wise, diabetes wise or islet wise.

My hand is almost healed.

Life is so mundane that I have nada to write about.

Maybe tomorrow will find life more interesting.

much apologies.

Monday, November 17, 2008

Dedicated

For Amy

Warner Brothers decided have a little spat with Youtube, so all videos containing WB artists, or their music, or covers of their music have apparently been removed from the site. Sorry.

If it gets your goat:

Contact WB. Let them know how you feel.

http://www.warnerbros.com/main/help/customer_service.html

Check out David Choi's Youtube page here.

Sunday, November 16, 2008

The Bird and I Can't Stop Sneezing.

We have colds.

I picked up this virus at work and the bird got it too. We've both been sneezing like, like what? My dad walking by a department store perfume counter. We're talking marathon sneezing here! I feel so bad for the little guy. All night long. *tthit,tthit! tthit!* from the little green guy. It sounds so pathetic and sad. He's miserable. He's wheezy and what he wants most is to camp out in my shirt and sleep with me. He can't do that because I don't want him getting anything worse from me, and I really don't want anything he's cultivating either.

Birds and humans can do that. Pass colds back and forth like toddlers in Kindercare if we're not careful. Hence the whole "omg! bird flu!" freak out that happens on occasion. That being said, passing colds from pet birds to humans is far less common then from human to pet bird, mostly because pet birds rarely have contact with the outside world. Green Bean hasn't had contact with anyone but Moe and I since summer and the only person in his face is me, so, yeah, we pretty much know how he got sick. I feel like a heel. I gave the bird cooties!

Bad mom!

*sigh*, He's on antibiotics.

He'll get better soon.

Still. it's makes me sad.

It's rough being little and green.

Saturday, November 15, 2008

World Diabetes Day - Monuments In Blue

One goal of the International Diabetes Federation this year was to have 500 buildings and monuments lit in blue for World Diabetes Day. They got 1039!

Michigan had one.

Yay Saint Mary's In Grand Rapids! for lighting Lacks Atrium


The country with the most monuments and buildings lit? Argentina with 193.

Municipalidad de Villa Constitucion.



The US had 36.

Sears Tower, Chicago.


United Nations, New York.


Niagra Falls, Niagra, NY.


and because I think its fitting and funny as hell,

Manneken-Pis, Brussels, Belgium.



Peeing blue for me and you!

Find monuments and buildings in your area listed here

Random Entertainment For The Week 11/15

Because "Smart Water" is ridiculous.

Warner Brothers decided have a little spat with Youtube, so all videos containing WB artists, or their music, or covers of their music have apparently been removed from the site. Sorry.

If it gets your goat:

Contact WB. Let them know how you feel.

http://www.warnerbros.com/main/help/customer_service.html


And Vitamin Water??

If it's water, and it's sweetened, and it's flavored doesn't that make it koolaid?

Ok, yeah, it also has vitamins and herbs in it.

Still.

Not Water.

Friday, November 14, 2008

World Diabetes Day



No Random Entertainment today

Watch non-random type diabetes video instead.

yaydiabetes!

wait.

no.

yayIDF!

Thursday, November 13, 2008

Switching Meds

I'm waiting to switch immuno-suppression medications, from Rapamune (sirolimus) to Cellcept, mainly because of the incessant mouth ulcers and constant need to sleep. Why are you waiting you ask? Well let me tell you!

My lovely insurance company won't cover Cellcept if I purchase it through my local pharmacy. It needs to be ordered through the company's mail order pharmacy. Generally, I don't mind waiting the week to ten days (or sometimes longer) it takes for them to get my medications to me. Last week, however, I had a daclizumab infusion to cover me during the switch over, I had that lovely little allergic reaction I wrote about and I'll be damned if I want to have gone through that bit of fun for no reason because my insurance company is slower then, (c'mon you know the phrase, sing it with me!) molasses in January.

I appreciate that I have insurance, don't get me wrong. plenty of folks out there are uninsured and for the most part I have pretty good coverage. I just wish they'd move a little faster.

Oh and you know what? I'm still on my full Sirolimus dose, have had the Daclizumab so my immune system is extra suppressed, and since Friday my mouth ulcers are gone! 7 days! No pain! Yay! But really, what's up with that? I finally give in to them and they just go away? It's not right! They should go away after I've started Cellcept so I can feel like switching was the right thing to do! Cause, there's a reason why they start us all out on Rapamune. It's a stronger medication. That;s why I put up with mouth ulcers for so long. I was afraid Cellcept wouldn't be as nice to my islets. I'm still going to switch. I'll just have to shove my fears aside, cross my fingers, and trust that all will go well.

I'll do that.

Fo sho.

Soon as it gets here!

Wednesday, November 12, 2008

If You Wear Medical ID

How often do you have people asking about it?

I wear mine everyday and I rarely have comments or questions about it. I don't mind when I do qet questions. I'm a big fan of Medical ID. Every one should have one, but today a co-worker asked me about mine so that she could order one too.

Now, I only get asked about once a year.

If that.

Maybe.

Normally, as I'm writing down Road-ID's URL for them (f.y.i. it's the links at the side), I get to hear about the questioner's own chronic illness, or that of someone else they know. So, the diabetic of interest that triggered said conversation today that I am forever meant to have an instant bond with, because we are sisters in the fight?

Her cat.

*sigh*

And in the end, I know you're left wondering, just as I was.

Who buys medical ID for their cat?

yaycrayZee!

Tuesday, November 11, 2008

Because I said I'd Post Everyday This Month

F.Y. I. This one has nothing to do with diabetes or transplants.

Gah! I've only been home a total of one hour since I dragged my sorry butt off to work this morning at 4 am. Its almost 11 pm now and I'm tired.

I spent most of the evening attending a very political post election type affair behind a very expensive video camera. Not in front of it! Behind it. Because they paid Moe, wedding, legal, and minor event videographer extraordinaire, to provide such services, and I agreed to help out. I hate when I agree to help out because she loves it and I think it's a huge huge drag.

I love our party business. I actually like setting up and taking down bounce houses, and entertaining children. I make a mean (in a good way) pirate with a balloon sword and I can paint faces until the cows come home or mom and dad make the kids go home, but I don't like the media business. Its just. Not. Fun.

And now I'm annoyed because I pride myself on NOT being a member of a political party. I voted for members of more then two political parties this past election and yet I left tonight having disagreed with all but about two points made by a host of speakers. It gave me a headache to say the very least.

So now I'm going to go eat some Tylenol (Paracetamol for my EU friends), and collapse into bed so I can get up in 3.5 hrs and do it all again, and again, and again.

'Cause tomorrow, we edit.

*groan*

Monday, November 10, 2008

Bread Flinger!

In a fit of domesticity last year, I baked bread.

Healthy wheaty bread.

It was nasty.

We didn't eat it.

I put it outside for the birds.

They didn't eat it either.

This is what ensued.

Ponderings on Family, Diabetes and of course, Research.

Ever feel like you're stuck in your head and you can't get out?

I've been thinking a lot about diabetes, the quest for holy grail, erm, diabetes research, and my family.

Family first right?

My parents both died six years ago. My mother was type 1 and died of complications of diabetes. Specifically, hypoglycemia in combination with cardio-vascular disease. My father, who was type 2, died of lung cancer, just 10 weeks after my mother and 8 weeks after his cancer diagnosis.

My oldest sister, Lisa, died this spring waiting for a liver transplant. She had diabetes also. Hers was a complication of cirrhosis. And now, my other sister is pregnant and has gestational diabetes. She's active, she's not overweight, she eats a healthy diet and yet still she got hit with it. Chances are it will go away when the baby is born, but the thing is, you never know. My sisters were adopted, so why did they end up in a family of diabetics? Who knows. The only person left is my brother and sometimes I wonder when he's going to call me and say "hey guess what? me too!" I hope it never happens, but still. I wonder.

It's as if we're cursed. Six people, five with four kinds of diabetes (three if you count cirrhosis induced diabetes as type 2). If you go back before my parents, there is no history of diabetes at all, on either side of the family. I know there are a number of factors influencing the increase in diabetes diagnoses in the past 100 years, including better diagnostic measures, increased average life span and the fact that people live longer with diabetes and are therefor breeding more of us into the gene pool. The media seems to forget these points when they talk about how fat and lazy our society has gotten. I'm not dismissing lifestyle, but lets not dismiss genetics and better living through medicine either.

So what to do? Not breed? Of course that's no answer. After all, it might prevent my children from getting diabetes but it doesn't help those of us already diagnosed. Live a better lifestyle? Good advice for everyone, it's easier said then done and, again, not much use in preventing diabetes if you've already been diagnosed, not to mention, it also doesn't prevent autoimmune diabetes. So we look to researchers for a cure, which sadly (and frustrating to everyone involved I'm sure) is not an easy endeavor. The body is a weird weird complicated thing to say the very least and one thing I've learned through out the whole transplant experience is that islets don't like to be messed with.

For each islet transplant there is usually more then one isolation done before an adequate supply of well functioning islets are obtained and able to be infused. Also, many patients need more then one infusion to be insulin free. UIC's program has managed to narrow that a bit and I was fortunate. I've only needed one infusion of islets to get off and stay off of insulin for two and a half years so far. I say so far because there are no guarantees. I understood that when I signed on, I still understand and accept it now. But what does the whole thing mean?

It means, at this point, if islet cell transplants were pushed forward into standard diabetes care and out of clinical trials that a large number of people would be put on a waiting list for one (or however many it takes before they get enough qood quality cells isolated that they can transplant) of very few available pancreases. And then, if the patient is able to get off of insulin with hopefully, one infusion, will their immune system still destroy those cells even with anti-rejection meds? Will the immuno-suppression meds be toxic to the cells because islets are that fragile? Will the immuno-suppression meds make the patient sick enough that quality of life isn't any better then before transplant? And then, will the patient be compliant and do their part in safeguarding themselves and their newly procured cells? Is a big undertaking by all involved.

So you see, there's a lot to work around when it comes to curing diabetes, be it through islet transplantation or other methods. No medication is with out side effects and no matter how you look at it messing with the immune system is going to have its pitfalls. If it were easy, it would have been done years ago, like back in the 80's when my doctors kept saying "there's going to be a cure in the next 5 to 10 years", and then said it again 5 years later. A lot of us with diabetes gave up holding our breath the second or third time we were told that. Funny though, I haven't heard it in a long time. well, not until I got my islets. Oddly enough, even though I think i understand the difficulty of it all. I think I believe once again in a cure.

For type 1's. But what are we doing about type 2? or LADA or any of the MODY's out there? We need more funding for research, durn it!

*sigh* see what I mean? These are the things that get stuck in my head and I'm in no way qualified to find answers. So they rumble around, I don't sleep, and I think.

Once again, I just need to get out of my head...

Sunday, November 9, 2008

Random Bonus Nutty-ness

1. because I'm trying to post everyday this month for some insane reason.
2. because it amuses me and I'm easily amused.
3. because you all know I love the Uke!
4. but mostly because I need to get out of my head today.

Warner Brothers decided have a little spat with Youtube, so all videos containing WB artists, or their music, or covers of their music have apparently been removed from the site. Sorry.

If it gets your goat:

Contact WB. Let them know how you feel.


http://www.warnerbros.com/main/help/customer_service.html

yayukuleleorchestraofgb!

Saturday, November 8, 2008

Was It Worth it?

I'm tired. It's disjointed. I apologize in advance. Confused? ask questions and I'll try to clarify...

*be forewarned, bad grammar, run on sentences and poor spelling ensue*


For those of you that don't already know, in May 2006 I had an islet cell transplant at University of Illinois Chicago Medical Center in, you guessed it, Chicago. Illinois. Since then I've discovered that many people in the diabetes community are critical of islet cell transplantation, and specifically of the need for immuno-suppression drugs afterward to prevent graft rejection. I think rightly so, to suppress the immune system opens up a whole Pandora's box of potential problems. The real question is, is it worth it?

Before I had my transplant I was on an insulin pump, testing my blood sugar 7-10 times a day and yet even with frequent lows my hemoglobin A1c was usually in the low sevens. Before pumping I don't think I got below 8 in my 20 odd years of diabetes. I was fairly insulin sensitive. My basal rates varied from .65 units of insulin an hour to .15 units an hour during activity and I'd often still go low even with the smaller basal rate. I was hypoglycemic unaware to a scary degree. I tested under 30 more then once after thinking, in the fuzzy glucose deprived way your brain gets during a low, "what have I been doing for the past hour? I'm hungry. No I'm not. I think I'll lay down on the floor. Maybe I should test. What am doing here?". I also tended to go dangerously low while sleeping, and a more then a few times woke up with an emt staring down at me. I like emt's, they're good guys and all, but they're scary to wake up to. I was afraid of dying like my mother did when her heart stopped because her blood sugar dropped low enough her body couldn't handle it. I decided I needed to do something. Anything. My first thought wasn't "transplant!" (my first obsession was continuous glucose monitoring, made available in my area only weeks after my islet transplant), however, while I was researching general diabetes type management, I developed an interest in islet transplant research.

Here I am. four years later, transplant past, immune system suppressed, beta cells beginning to decide not work as well as they once did (they're doing good, really they are, they just like to go on strike occasionally) and do I think its worth it?

That's the part that difficult for me. it;s what I get stuck on, because it's not as easy to palpate as some of the negatives out there of supressing the immune system (like medication side effects, the increased risk of infections and certain cancers). I can say I feel better, but some days I don't. I can say I have more energy, and then anemia rears its ugly head. My blood sugars are good. really good. I can pretty much eat what I want and most of the time my islets do their thing. But then there are days when, like i said before, they go on strike and my blood sugar goes up higher then I'd like it to. Those days frustrate me to no end. Those are the days you all read about here when I'm whining, but the majority of the time I have great control and I'm happy with my borrowed cells.

With the control I have, I've gained what I think is the best part of the islet transplant, peace. I no longer worry about going low in the middle of chasing my nieces around the block, or babysitting. I can go hiking and not have to plan for every diabetes related disaster that might befall someone in three hours in the middle of nowhere. I go to sleep and know I'm not going to wake up and have an emt staring down at me because I bottomed out in the night. Last winter we blew out two tires hitting a pothole and had to walk in the snow and cold. I had no food on me, or cash, and no access to an atm. We were no where near a store anyway, so I couldn't have bought food even if I needed it, and it was just such a relief to know I didn't have to worry about my blood sugar. That's the kind of peace I mean.

Before my transplant. I thought about diabetes constantly. It never went away. I still think about it a lot, but I think about it because I want to, not because I have to. I still test my blood sugar, usually two ro three times a day. sometimes more. sometimes. not at all. I test it to keep an eye on how things are progressing and for the reassurance that my islets are still functional. I no longer feel the need to test in order to make it through the day.

There are other things to be thankful for, like the fact that my kidneys have improved. I also I can't remember the last time I felt that annoying burning pain in my feet from neuropathy. And I have glaucoma, the few years before my transplant the pressure in my eyes was slowly increasing, yet over the past two years that has stabilized. I still have damage from glaucoma. I'm still not allowed to drive but my vision hasn't gotten any worse.

So yeah, in the diabetical sense I'd say at this point having had the transplant was worth it. And If i get to the point that my borrowed islets quit functioning and I end up right back where I was, I still have my cancer diagnosis and cure.

For that, I shall always be thankful!

So yeah, I'd say it was worth it.

AAAAHRRRGGH!

The ungodly amount of sleeping I did this week because of Benedryl (did I speel it right this time?) has thrown off my precariously balanced sleep cycle. It's 5:05 am and I'm still awake. If I sleep 3 hours. I can get up. take my meds. go back to sleep for an hour and hope to wake up so I can have a somewhat normal type day and go to bed on time for working my normal schedule. As it is. I'm flipped!

night meet day, day meet night.

yawn!

I'm Stuck.

I said I'd write more about life (so far) after islets.

I'm working on it. Really. I promise.

Writing has never been my forte. Give me crayons, and I'll draw you a cartoon. Give me paint, and a child's face as canvas, and I'm fantabulous!

Writing? not so much.

Have I ever mentioned that I love pens?

It's a curse.

I'm almost done.

Part 1 tomorrow...

Yayprocrastination.

Thursday, November 6, 2008

It's That Time Of The Month Again

Not THAT!

I'm talking about organ donation! *sheesh*

It's easy. It'll only take a few minutes of your time and can save lives.

Find your state's registry Here.

Thank You.

*you wonder why I push the whole register-go-now thing over and over until you come across a blog like this and realize you just can't say no*

Wednesday, November 5, 2008

Boxing With Your Transplant Surgeon May Result In Poofy Eyes

The following has the word Bennedryl in it about 50 times and I'm sure I spelled it wrong, its not in my spell checker so if it bothers you, sorry. I'll change it later.

They gave me one of these:



and I got two of these:


only this is beautiful because it was taken 6 hours after my initial allergic reaction. Gone were the goose eggs as eyes by then.

I always go for the Bonus!

So my trip to Chicago started out as usual. Blood pressure, weight, labs, wait and see Dr. Transplant, and all was well, for the most part. I whined about mouth ulcers and constantly being tired and blah blah blah, so it was decided that I'd switch from Sirolimus to Cellcept and that I needed an infusion of Daclizumab (aka Zenapax)to cover me during the transition. I've had this med before so no problem. I was given a script for an immobilizer for my wrist/hand (see my tomato soup post from last week) and was sent on my merry way to obtain said item. Insurance no cover it, so boo, I left there and went to meet the group of people that work behind the scenes and prepare the islets for transplantation. Seriously an awe inspiring group of people from all over the globe dedicated to finding a cure. One of the other islet recipients was also there and we talked a bit about how the islet transplant has changed our lives (more on that in my next post). I read my "thank you" exerpt from my blog, well actually Melissa read it while I cried, cause, well, I was being a girl. *sigh*

We got a tour of the cell isolation lab. I wish I had photos to post. It's amazing and I'm not even close to being qualified to talk about it. They had islet stained so we could look at them under microscope, which was too cool!. I wanted to pat my belly and say "good islets, nice host liver".

After that I went back up to the clinical research center for my infusion of Daclizumab and that's when my day decided to go haywire. Because I can't do anything the easy way, I decided to be allergic to the med. The infusion takes about 30 minutes and about half way through I felt nauseous, but it went away. Ok fine, sometimes I do that, I just have random nausea and sometimes I puke and sometimes I don't. go figure. Right about the time the infusion finished my eyes started to itch and that too went away, but no I couldn't leave it at that, so the itching came back worse and my eyes started swelling shut and that was when people started running around like mad squirrels on a mission.

My blood pressure shot up, I was dragged off to a room with a bed, stuck with an IV and given Bennedryl. Bennedryl in an iv push when you're stressed and half panicked has got to be the whackiest buzz I've ever experienced and it wasn't even nice. I wanted to fall asleep but was afraid to because I was very aware that every once in a while I felt like I had to think about breathing in order to breathe. I'm sure that part along with not being able to stop shaking was just anxiety, but still, it freaked me out.

I couldn't tell you how long it took before they decided everything was okay but I missed the luncheon except for the last 20 minutes or so. yes, they actually let me go to it, all puffy eyed and sleepy. I wish I had been there for the whole thing, hopefully, they'll do it again next year and I won't let them give me any whacky drugs before hand.

I'm still taking Bennedryl every 4 hours because at about 3.5 hrs after a dose my eyes start swelling again, but the itching is gone and all shall be well soon.

That was pretty much my day, or at least the highlights and what I remember. Melissa and I decided to stay in Chicago last night instead of driving home. I slept the rest of the day, and night and today. I'm going to work tomorrow, maybe I can sleep through that too.

I need some time to think about it with a clear head first, but tomorrow I'm planning on writing more on how having that islet transplant has effected my life, because it's not just about blood sugars and being afraid to follow in my mother's foot steps. It's given me different eyes, and not just puffy ones!

Anyway,

Yayresearchers and everyone behind the scenes!

I'm glad we got to meet you all!

Tuesday, November 4, 2008

Tomorrow

Today's trip to Chicago is definitely post worthy, however, at my appointment I had an allergic reaction to one of the meds they gave me and I was given and enough Benedryl to send an elephant into Wonderland. Needless to say, I've been a tad sleepy since. I'll post details tomorrow when I'm awake and can think more clearly cause really, my spelling, grammar, and typing skills are bad enough with out drugs.

oh and

YayObama!

Have I Ever Said Thank You?

*re-posted from August 4, 2008 because today it needs to be said again*

I'm not sure I have here anyway, but to the all of the families out there that have the compassion and wherewithal to see past their own grief and say yes to organ donation when their loved one has died, I say thank you.

Thank you to my donor's family, who two years ago made the decision to donate their loved one's organs not only to people that needed it to survive but to the research that improved my own life.

Everyday I get up and say thank you. Everyday something happens and I'm glad I had the transplant, even on days when I'm whining about mouth ulcers and annoyed that I need to stop what I'm doing to take yet another pill and even when I'm forking out the cheddar to pay for one more script, I'm very aware of just how grateful I am to my donors family. And to everyone else that made my islet transplant happen.

So to my Donor: Thank you
to my donor's family: Thank You
to the people that help fund the Chicago Project and UIC's islet transplant program: Thank you
to the doctors that do the work they do: Thank You
to the transplant coordinator, and nurses and office staff: Thank you
to the researchers, lab techs and everyone else behind the scenes that make islet research happen: Thank you
to my family and friends for putting up with the trips to Chicago and with me in general over the past three years: Thank you

And to the people that read and leave comments: thanks to you too!

Monday, November 3, 2008

Diabetes Handprint

Last year TuDiabetes.com did the Word In Your Hand Project. If you're not familar with it check out the resulting video here.

This year TuDiabetes is partnering with One Touch for The Global Diabetes Handprint. For every entry $5 will be donated to to one of two non-profit organizations - Diabetes Education and Camping Association or Taking Control of Your Diabetes. You choose.

This is my submission from last years Word in a Hand.



This is my submission to this years Diabetes Handprint.



*because there's a fine line between feeling like this disease is endless and hoping for a cure*

If you decide to submit a photo. E-mail me at parrotletzoo@gmail.com or link me to it in the comments. I'd like to see it.

thanks.

Sunday, November 2, 2008

Back to Chicago

Tomorrow I head back to Chicago to see Dr. Transplant about the whacky lab results I had last month when I was there, and possibly changing immunosupression meds in order to get rid of the constant mouth ulcers. I'll also be attending a luncheon so those of us in my study group can meet the people behind the scenes. You know, the guys that work in the cell isolation lab that well, isolate the islet cells and prepare them for transplant. I'm geeked! I have questions about work they're doing with islet cell encapsulation and well, cell isolation in general. I'd really like to get a better grip on the specifics of the process so I can report back here.

We'll see what happens when we get there. ;)

till. Tuesday.

Saturday, November 1, 2008

Tomato Soup

This is what happens when you make tomato soup but don't know how to use a microwave.



please pardon the craptastic carmera phone photo. thank you.