Letter Writing Day

Today's topic for Diabetes Blog Week is Letter Writing Day:

You can write a letter to diabetes if you’d like, but we can also take it one step further.  How about writing a letter to a fictional (or not so fictional) endocrinologist telling the doctor what you love (or not) about them.  How about a letter to a pretend (or again, not so pretend) meter or pump company telling them of the device of your dreams?  Maybe you’d like to write a letter to your child with diabetes.  Or a letter from your adult self to the d-child you were.  Whomever you choose as a recipient, today is the day to tell them what you are feeling.

Dear 15-year-old Self,

If this time-machine thing works out as planned, it's January of 1994 and you're sitting in the car on the way to the hospital. Yes, you have diabetes. No, no matter how much you bargain with the ether, it isn't going to go away. You are about to enter a medical system that does not do well with informing young people of what is going on. So, let me give you the heads up on some of the things that are going to happen over the next eight days:

1. When your parents bring you toileteries from home MAKE SURE THEY BRING YOU SOME DECENT/NORMAL SMELLING SOAP. The Bacto-Stat soap they give you to use in the hospital smells like disease. So discomforting.
2. They are going to TAKE YOUR BLOOD EVERY FOUR HOURS, EVEN IN THE MIDDLE OF THE NIGHT. It will freak you right out the first night, because nobody told you it was coming. 
3. They are going to WAKE YOU UP AT 6 AM THE FIRST DAY YOU ARE THERE. Since you are still practically in a coma you will do something (that maybe only you ever find) incredibly funny. Enjoy it. 
4. That first morning they wake you up at 6 am THEY WILL BRING AN ENTIRE NURSING CLASS TO OBSERVE YOU. No one will ask if it's okay. They will just barge right in like it is their right to do so. If you don't want them there, tell them to leave... but not until after you do the incredibly funny thing.
5. There will be a nurse that comes in to your room. She will not even greet you. Whatever you do, DO NOT LET THIS NURSE GRAB YOUR ARM! She will take something called a Heparin Lock (or Hep-Lock). It will look like a long large gauge needle and she will just shove it in your arm. They will tell you it is so they can take blood from this IV instead of always taking it from your arm, where it will hurt and bruise. BEWARE: This is a lie! There will be only one nurse with the Heparin and she will generally not be available. Then, they will just take the blood from your arm anyways!!! So, for the love of God, I repeat: DO NOT LET THIS NURSE GRAM YOUR ARM.

In general, diabetes will be a lonely disease for a very long time. People will help out (and that will be awesome), but no matter how many are in the waiting room you still have to learn to go into those doctor encounters alone. Growing up people will feel badly for you, they may call you 'brave' or 'courageous'... even though you don't feel sad for yourself, nor brave about any of it. Don't let people treat you like your porcelain or fragile (I know that you won't!) Don't strive to be normal-- it's a bullshit social construct. Do visit the Banting House in London, ON sooner; it will give you a greater appreciation for wonderful it is that you get to finish high school, go to university (ugh, THREE degress... I know), make great friends and love a lot. Most of all feel proud of yourself, because you will handle a complex chronic illness (in combination with the lot of crappy life circumstances you already know about) with grace and determination... and that's all anybody can ask.

Sincerely and with love,

Your 33-year-old self.

Admiring Our Differences

This week is Diabetes Blog Week and the first topic is 'Admiring Our Differences':

We are all diabetes bloggers, but we come from many different perspectives. Last year, Diabetes Blog Week opened my eyes to all of the different kinds of blogs (and bloggers) out there – Type 1s, Type 2s, LADAs, parents of kids with diabetes, spouses of adults with diabetes and so on. Today let’s talk about how great it is to learn from the perspectives of those unlike us! Have you learned new things from your T2 friends? Are D-Parents your heroes? Do LADA blogs give you insight to another diagnosis story? Do T1s who’ve lived well with diabetes since childhood give you hope? Pick a type of blogger who is different from you and tell us why they inspire you - why you admire them - why it’s great that we are all the same but different!!

I have a confession: I always thought that LADA or latent autoimmune diabetes in adults was just like Type 1, except in adults... BUT...

Not too long ago I was writing a definition about diabetes mellitus for a paper. I had a lot of resources about Type 1 and Type 2 diabetes, but nothing about that type somewhere in-between: Type 1.5. I found a snippet here and there in different books or articles, but couldn't find all that much. I thought maybe it would be best to ask a real expert about LADA and sent a tweet to @Diabetic_Iz_Me, a.k.a. Cherise, who has had LADA since 2004. Cherise referred me to one of her favourite sites: the Islets of Hope page. From there I was able to find a lot of references and information... and learn lots about how my assumptions of this Type 1.5 were WRONG.

From what I read (and please correct me if I am wrong) LADA starts off looking a lot like Type 2, except unlike Type 2 there are certain autoantibodies present that are linked with the destruction of beta cells. In Type 1 there are way more autoantibodies and the beta cells die off much more quickly, but in LADA there is only one or two of these autoimmune proteins and the pancreas cells are destroyed much more slowly. Every person's diabetes is unique and requires individual plans of care, but the average time it takes a person with LADA to require insulin injections is around 4 years. So, kind of similar, but still different. I was glad to have the opportunity to challenge my assumptions and learn something new. I was also glad to have someone open to questions and willing to inform (Thanks Cherise!).

Ghosts.

So, I'm living with this ghost. Well, I am haunted by a lot of ghosts, but this one is different. Somehow, I'm not sure how.

I figured out what was making me sick. It's a long fucking story and I don't feel like going through it. Basically I figured that I have really bad reactions to milk and soy. I stopped eating it. You'd think that feeling physically better would somehow equate to feeling better mentally. Apparently that's bullshit.

I am stuck amidst piles of clothing, books, general junk and I can't remember acquiring most of it. I'm trying to write papers and I can't remember how to format my papers, let alone any of the articles I've read or most of the classes I attended. I feel like I'm cleaning out a dead person's house, except it's all my stuff. I don't know who I've been for the past year... probably longer. An existence of barely getting by is apparently pretty stunned.

In some ways now I see all these small things around me and am amazed. There are some things that seem almost magical. But they are also wholeheartedly overwhelming and painful at the same time.

I remember standing in front of the remains of this magnificent dead tree and focusing on it I thought for a while, "There's an entire live forest sitting behind this one dead tree. Why do you focus on the one that's gone?" But the truth of it is that focusing on either one doesn't negate the other. They both exist at the same time in the same place and reconciling that has been a bit much lately.