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(and green bean)



Updated: 2017-08-31T02:37:43.903-04:00

 



Hey Chicagoland Diabetes Community!

2012-03-21T12:00:22.459-04:00

My (islet) transplant surgeon, Dr. Jose Oberholzer, will be speaking at the Oak Park YMCA about the work that the Chicago Diabetes Project is doing in finding a cure the Type 1 diabetes.

The Chicago Diabetes Project is a different kind of research paradigm with researchers collaborating globally to find a cure for Type 1 diabetes. Rather then fighting for resources and information they're actually working together to speed along results, and hopefully bring a cure to diabetes community more quickly.

I can't say enough positive things about my experiences with Dr. O, and the Chicago Diabetes Project. If you are interested in diabetes research and pancreatic islet transplantation I encourage you to attend. Admission is free.

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6 yrs post transplant (almost)

2012-02-15T10:15:52.725-05:00

Every year I have metabolic testing done to see how my islet cells are functioning. This week I had 2 of 4 tests and both had excellent results. May will be 6 years since I had my transplant and it still freekin amazes me!

It changed my life in such a basic fundamental way that it's difficult to explain just how amazing it really is. When a disease is all encompassing like diabetes is, it becomes woven into your life. It has to or you can't survive. It effects everything from what you eat to how you make your living to the people you're friends with and every, single, choice you make, is made in the light of, "How will my health be effected by this, and how will this choice be effected by my health?". It's no wonder there are so many people burned out by Diabetes. (Doctors, there's a lesson for you here about your lazy non-compliant diabetic patient that just won't listen to reason).

Diabetes wears you down, it can be oppressive, daunting and down right scary. To have that constant burden lifted after 26 years of it is nothing short of a miracle.

I wake up every day and I say a silent thank you to my donor and their family, to Dr. Jose Oberholzer, the University of Illinois Hospital, Chicago Diabetes Project, and especially, especially Cellmates On The Run, the charitable organization that helps fund the CDP through raising money by running in races and marathons throughout the year. If you have diabetes, or know someone that has diabetes please consider donating or even better running with them. There are still charity entries for the Chicago Marathon open. You can find their website here.

thank you

oh and

Yayislets!



3 Comments

2011-07-24T08:41:09.735-04:00

Sitting outside listening to the early morning in Pohdunk Mi makes living here in February worth it.

I haven't been writing much not because I'm burned out or anything like that, but because everything is just so normal.

It's exactly what the whole thing was about.



2011 Chicago Marathon

2011-06-19T16:36:05.850-04:00

Runners it's not too late to sign up for the 2011 Chicago Marathon. Cellmatesontherun still has entry slots available. Registration ends June 30. more info here.http://www.blogger.com/img/blank.gif



Chicago Santa Speedo Run, Dec 4. 2010.

2010-11-15T19:59:05.886-05:00

You know you want to!

Strip down to your (almost) skivvies and run in the cold for a charity (not to mention the beer and snacks before hand at Shenanigan's in Downtown Chi).

The event's organizer is Type 1, her brother is also type 1 so you know the cause is close to their heart (and mine). Last year they had around 150 runners and this year they're hoping to double that so all of you crazy runners out there get even more crazy and take it off (well not all of it) for Diabetes!

Details @ http://www.chicagosantaspeedorun.com/

and on Facebook.

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More Derby

2010-10-17T22:10:30.467-04:00

I think I'm in an abusive relationship with roller derby, and I love it.

I am sore like you wouldn't believe it today, not because I took some massive hit that is worth talking about or that I skated my booty off.

noooo

I got new wheels. It's exciting. The ones that came with my skates were not appropriate for the floor we skate on so I bought better, more maneuverable, way way pinker wheels and I fell on my butt in the middle of my kitchen floor 15 minutes after I put them on.

Can you say ouch boys and girls?

Practice today was pointless. I only lasted an hour and a half.

My ribs hurt, my shoulder is never going to heal, and I have a giant bruise on my right butt cheek.

However when I gave up on practice my blood sugar was 92.

So yeah, that's good.

oh and I finally picked a Derby name.

Black Islet

kinda has a ring to it, no?



Dinner, Polymer Chemistry, and yay! I managed to not puke. ;)

2010-10-14T21:25:11.719-04:00

So the dinner for The Chicago Diabetes Project was awesome. When I got there the first thing I saw was a bigass camera and thought "oh crap" but lucky me they were gone by the time I spoke and poor Sandy, one of my fellow islet recipients had the joy of being followed around by CBS Chicago. You can read the brief article and watch the video that was aired in Chicago Monday night here.

Speaking was easier then I thought it would be and I was just so honored to be there and be able to talk to the people that make everything possible. At dinner I sat at a table with one of the researchers from Slovakia. He's working with polymers for islet cell encapsulation and he talked a little bit about both primate and human trials being done with encapsulated islets around the world.

The dinner was very nice, I especially enjoyed meeting all of the amazing scientists, donors, researchers, doctors, and other islet recipients and I didn't puke or cry while I was up there speaking.

so proud! ha

go cdp!

What I thought about right before I started speaking. ;)

Oh yeaaah,

That's me.

In a mermaid costume...
(image)



To puke or not to puke, that is the question.

2010-10-06T22:31:18.463-04:00

Sooo, I got a phone call today from one of the nurses at UIC and was asked if I'd speak at the Chicago Diabetes Project's dinner on Monday.

Of course, I said yes, but usually when I'm in front of a crowd, the crowd consists of kids age five to ten, and I'm making balloons animals.

So yeah, I'm already nervous.

I think I'm going to puke

or cry.

probably cry, cause damn, I'm like that.

*sigh*

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Long Time No See

2010-10-02T20:47:27.602-04:00

I can't believe it's been over two months since I've posted. Yikes! Time flies when you're uber busy with, um, stuff.

In August my A1c was back down to 6.0, exercising has paid off. Big surprise eh? Yeah, the hard part was finding a form of exercise I really enjoyed cause I've always been the "running is for when scary people chase you" kind of gal.

That being said, I discovered skating and I've become a tad obsessed. Now when I say skating I don't mean the Dorothy Hamil kind or even the skateboarding kind, which I do enjoy, I mean the put on some quad skates, a short skirt, a bad attitude, and knock your fellow roller girl over kind of skating. Yep, I joined my local roller derby and I think I'm in love. ;)

Skating on an almost daily basis however has done some weird things to my blood sugars. I've started having random lows in the range of 50-70 about once a week and I have to stop to eat after skating an hour or so to refuel or I definitely feel low. Power bars and Taco Bell have become my best friends.

My shoulder is still screwed up, it's not as painful but I still don't have full range of motion. I have an appointment with an orthopedic doc in a couple of weeks. Hopefully he'll have something new to suggest. If not I guess I'll have to try PT for the third time. Or I could just ignore it and hope it goes away. I'm sure the latter would not be approved by Dr. Transplant and the folks at UIC. ;)

and speaking of approval, I haven't mentioned the whole Roller Derby thing to them so, yeah, shhh! cause exercise, good, track rash from not so sanitary track floor, not so good.

In other news

October 11, I'll be in Chicago for "dinner and dialogue" with the folks at the Chicago Diabetes Project. I'm looking forward to it. In addition to being able to meet my fellow islet transplant recipients, and learning something new about the whole process, I'll also be able to talk to the research scientists that make it all possible. That, to me, is the best part cause how do you say thank you for something like that? For the most part they're behind the scenes and don't get to see the results of their efforts. Hopefully being there to say thank you in person will make things more tangible.

what I'd like to do is line them all up and hug the shit out of 'em.

woot!

yay scientists!

and I'm off

cause I'm late and there's a pair of skates and wood floor nearby that have my name on them....



Transplant Games

2010-07-27T20:47:41.264-04:00

The 2010 U.S Transplant Games begin July 30. Check it out!

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So the picture is cut in half. click on the video to go to youtube and see the whole thing. :)



Electrolytes anyone?

2010-07-21T23:07:39.036-04:00

So Monday I went to work and at said fine fine establishment there is what I affectionately call "The SmellyZone". Its an area of the building close enough to dumpsters that in the hot summer reeks like, for lack of a better way to describe it, hot diapers and decay. It's just that lovely. Any way, I had the joy of working in the SmellyZone on Monday. It was not fun. Immunosupression drugs seem to make me uber sensitive to smells. Said smells tend ot make me nauseous. You see where I"m going with this?

yeah. I was pretty crabby by the end of the day.

So, my work day over, I went about my usual after work type of business and around 5pm passed out on the couch in a well deserved nap and woke up about 30 minutes later in excruciating pain when every muscle in my toes, foot calf, ham strings and butt cheek decided to spasm. After what was probably the longest 3 minutes of my summer, I finally got my partners attention and she stuck a bottle of Gatorade in my face and my muscles relaxed enough that I could move.

Gatorade seemed to have fixed things but that night i had cramping again. In the morning I talked my transplant coordinator about it and after having some blood work done discovered my thyroid levels are too high and magnesium and sodium levels too low.

Today, after a day of magnesium supplements, I feel like a new woman. No muscle aches, no joint pain, no nausea.

It's amazing what a little salt lick will do for you.

As for my thyroid levels, meds can easily be adjusted.

Moral of my story?

It's summer time. if you have diabetes or spend a lot of time in the heat keep hydrated, but not only that keep salted.

Trust me on this one.

You'll be glad you did.



On the Islet front.

2010-06-27T13:47:31.384-04:00

My trip to Chicago for the most part went well. My islet cells are still producing huge amounts of insulin while by blood sugars are running a little higher then they should. Why I'm having issues with insulin resistance is a puzzle since I'm not over weight and didn't have resistance before my transplant. The game plan now is to increase aerobic exercise in order to increase insulin receptors in my muscles.

I have since started walking minimum of 3 miles a day and I'm seeing some results already in my fasting blood sugars. Now we just need my post meal numbers to start coming down a little faster!

While in Chicago I had a test called CIMT done. CIMT is an ultrasound of the walls of the carotid (neck) arteries, the thickness of which can be reflective of the health of coronary (heart) arteries. I also accidentally had C-reactive protein (a marker for heart disease) tested instead of c-peptides. Both the carotid artery u/s and c-reactive protein results were excellent. Which makes me happy since I've had diabetes for 30 years, been on cholesterol lowering meds for 20, and both of my parents had heart disease at a young age.

Kinda makes me feel like I'm doing something right. It's either my snack obsession with popcorn or celery. I can't think of anything else I do all that consistently, but eat those. ;)

I'm guessing its the celery.

or else the popcorn.

It is a whole grain after all...


(image)
Green Bean. Caught in the midst of mischief. Naughty bird likes wires.



Chicago Marathon 2010

2010-06-18T12:31:00.364-04:00

The Chicago Marathon is sold out, however if you'd still like to run, you can join CellmatesOnTheRun, and help support diabetes research at the same time.

You can find registration info here.



1 Comments

2010-06-17T12:20:08.300-04:00

I'm heading to Chicago Sunday for a 3 month follow up appointment with the islet cell transplant team as UIC. I'll be having two more metabolic tests done. The first an IV glucose tolerance test and the second a glucagon stimulation test. Both will give the research team a better idea of how my islets are functioning. I'll finally be able to talk to them about the results of the metabolic tests I had done in April.

Hopefully this next set of tests will be better then the April's. Keep your fingers and toes crossed for me and I'll let you know what they say.

btw. June's donation goes to the American Cancer Societies Relay For Life.





It's Tranniversary Time!

2010-05-15T10:58:22.239-04:00

Yesterday was the 4 year anniversary of my islet cell transplant. I'm still off insulin, have minimal side effects from the current immunosupression meds I'm on, and even though my blood sugars are occasionally higher then I'd like to see them my over all control is great.

Would I do it all again?

you bet.

Happy tranniversary to me!



Chicago and Back Again

2010-04-24T22:11:12.049-04:00

I went to Chicago this weekend for yeartly metabolic testing. This time the results weren't exactly what I wanted to see.

The first test, an oral glucose tolerance test, my blood sugar spiked at 216, which isn't all that bad, but it ended at 152 when it should have been under 140. They also said that my c-peptides were high. Really high. like 9.6 when the upper end of normal is around 3.4.

Once again I don't think they really know what to do with me because they're not sure why I get the results I do. They've mentioned that it could very well be my weird anatomy and whacky vasculature, but like I said. they're not sure.

I have two more sets of metabolic tests to be done in June and hopefully they'll be more normal like. We'll see, until then I haven't been told to change anything.

On the non islet front, I was diagnosed this past week with frozen shoulder. It's fairly common with people that have type 1 diabetes and I'm not sure what triggered it, but I start physical therapy this week. yay

Dr. O at UIC has reluctantly said I can use Motrin if I need it during P.T as long as I drink a lot of water to help protect my kidneys. Nsaids in combination with immunosupression medications are harsh on the kidneys.

Yet another good reason for islet cell encapsulation to be approved for human trials soon. And that sadly takes funding on a national and private level, neither of which are free flowing in the current economy.

*sigh*

we all want a cure, no one wants to fund it.
btw. this months donation goes to CellmatesOntheRun because Dr. O ran in the Boston Marathon on Monday. And how else to I say thank you for being a crazy person that runs all the time to raise money for people like you and me?



*sigh*

2010-03-30T16:33:12.661-04:00

I got a bad haircut today. Not just a little bad, really bad. Bad, as in, I'll be getting a second haircut in a few days to fix the enormous badness of it all kind bad.

That being said I donated it again to Children With Hair loss, and a child will be getting a new head of hair out of it, so it's all good.

So here's my theme song for the day.

Yay bad hair.

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Community Heath Charities

2010-03-21T13:17:00.626-04:00

This month's donation is heading to Community Health Charities.

CHC's Michigan chapter supports a number of health related charities in Michigan including the American Diabetes Association.

You can find your state's chapter here if you are so inclined.

Links of course in the side bar.



Haiku And

2010-04-24T22:11:42.176-04:00

So much depends on
the singing of a bird on
a cold winter's day.

(image)
Green Bean two days after my last trip to Chicago.

He gets upset every time I leave him for more then a night and chews his feathers until he's naked.

His feathers are finally starting to come back in.



After my transplant the only feathers he had left were the ones he couldn't reach on his head.

So sad.

It's rough being little and green.

The poem is something I wrote soon after I got my first bird 20 years ago.



Next Stop, Chicago Marathon

2010-03-20T18:48:50.475-04:00

Cellmates On The Run met their fund raising goal of $10,000 for the 2010 Shamrock Shuffle this weekend. The race is Sunday so it's not to late to help blow that goal out of the water!

Check it out.



Random Entertainment - Tilt Shift

2010-03-05T11:08:33.287-05:00

Small life in Saxon Switzerland.

by Christoph Schaarschmidt

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Music:
Rocky Votolato
Uppers aren´t Necessary



Children's Rare Disease Network

2010-02-13T19:03:00.255-05:00

We decided this month's donation should go to Children's Rare Disease Network.

Children's Rare Disease Network provides education, support and resources to parents, families of children with rare diseases, as well as the researchers that support them. Diseases like Ivemark Syndrome and MODY syndrome. Diseases that are less understood and well, largely underfunded in the research spectrum.

You can find more information about CRDN here.



Just Because

2010-02-12T18:53:32.212-05:00

For some reason the people in my life like to give me salt and pepper shakers. I'm not a particular fan of salt and pepper shakers, but I suppose it's better then being given candy dishes or sugar bowls and honestly, I've come to appreciate them for the gifts that they are and the thought behind each odd pair that I now own.

My most recent set are two love birds. They stand about 3 inches tall and my parrotlet seems to think they're pretty cool. He sat there and chattered at them until he got bored and went off to play with the parakeet.

He's a goofy little bird.

(image)



Bank Of America Shamrock Shuffle / Chicago Marathon 2010

2010-02-07T23:28:56.246-05:00

It's that time of year again.

If you're thinking about running in the Bank of America Shamrock Shuffle 8k Sunday, March 21, 2010 or in the 2010 Chicago Marathon, October 10, 2010 please consider joining CellmatesOnTheRun in running for a cure for diabetes.

You can find information about CellmatesOnTheRun and the Chicago Diabetes Project here, and for a personal look at the work the CDP with diabetes research and islet transplantation feel free to peruse my blog or email me at parrotletzoo@gmail.com.

Oh and by the way, my liver biopsy was all normal like. I haven't heard if they found any islets in the tissue taken during the bipsy yet. I'll keep you updated as soon as I hear anything more.

Yayhealthylivers!



Home Again, Home Again, Riggity-jig

2010-01-21T12:46:06.363-05:00

My gallbladder is out, I'm home, off pain meds and all is well.

Sounds great but the road was rough getting here. Because I have Situs Inversus or more accurately Situs Ambiguous. along with vascular abnormalities, my surgery took longer then normal. Four times longer. The surgery went well, the healing is also going well but the first few days I kept having muscle spasms in my abdomen that left me gasping for breath and well, crying, which really is not like me. I usually can handle pain. Not this time. I was a whiny blubbering baby about the whole thing. But damn, it hurt like hell!

Once one of the doctors figured out I was having muscle spasms and gave me a muscle relaxer the whiny blubbery-ness went away and I went home. Yay!

I also consented to having a liver biopsy done at the same time. I have tumors on my liver two of which have already been determined to be hemangiomas and another was one of those things no one is really sure about, so yeah, good times. I also gave permission so the researchers could look for islets in the liver tissue and all such happiness. I'll let you know what the results are as soon as I find out.

Keep your fingers crossed for tumor - benign, and islets - many.

Thankyouverymuch!