Dia-beee-tus, Dia-bet-es or Dia-betic?

When I visit the Type 1 online communities and blogs, there is talk about the 'proper' way to pronounce diabetes. Walter Brimley is often mentioned--"You check your blood sugar. And you check it often!" I remember before I was diagnosed I saw those commercials and wouldn't think a darn thing about it.  Afterwards, I would laugh ironically. After being diagnosed with JRA when I was 10, I really thought I was done with autoimmune diseases. How naive of me to think there is a one autoimmune quota! The thing with autoimmune diseases is once you have one, another is likely to follow.  It reminds me of a domino effect. Cause and effect. One thing influences another.  The JRA led to T1D.  T1D led to Celiac Sprue.  I hope 3 autoimmune diseases are my official quota!!!!!

About 2 years ago, when I was in college, I was diagnosed with Celiac Sprue. It was hard enough with the diabetes! How the heck would I possibly deal with yet another health problem??  I've got to say, I am currently very concerned about the possibility of yet ANOTHER freak** autoimmune attack resulting in yet another specialist to see. I just saw my rhumatologist for the JRA and I asked him while we were discussing my blood work whether there were any signs of funky immune system behavior going on. (Ok, I didn't use those exact words....but still.)

Ok, I got off the subject. I was actually going to tackle autoimmune conditions in another entry.  Oh well. Life is short. Expect the unexpected. 

The real cause of my insomnia

I'd like to begin this entry with a short piece of conversation between my endo and I during a visit.
ME: "I am still having problems getting to sleep."
HIM: "That's because you're afraid of going low during the night."
ME: "No, I think its stress and worry that's mainly keeping me up."

At the time, I couldn't-or didn't want to-comprehend that I might afraid to go to sleep. I mean, who is afraid to drift into la la land?
Me, apparently. Terrified. Subconsciously, at least.   I am rarely able to fall asleep until I know my sugar is in the low 180's. Which is actually a little higher than what I aim for. (90-150 is the range for me.) Everyone is different. Non pancreas challenged people are in another range altogether. Hmmm, I like that phrase. 


The lowest-at least to my knowledge-that my sugar has been is 27. Not too far from 0. Which means I'm at very high risk at that point for a seizure or dying. Scary as h***. Luckily for me, and those around me, I seem to have a very high tolerance for LBS (low blood sugars-aka. hypoglycemia).

One morning, I woke up with my internal alarm bells blaring. I didn't even have to check in with my meter to know what was going on.  Heart pounding. Fingers shaking.  Anxiety. But I also had to remain calm and focus. I got downstairs and grabbed the first thing with sugar I saw.  Boy, was I relieved when that sweet sugar hit my bloodstream! Big breath out.

I don't carry around a glucagon pen-its about $100 from the pharmacy. They also expire. And someone--not me, obviously--needs to know how to use it. (This is one shot I will never have to give myself!) I always try to carry around glucose tablets or some form of sugar.  Or money, in case I should need to grab a snack.  The more options I have, the more secure and safer I feel.

I also know that I am not alone with this feeling. Other pancreas challenged people, mothers and fathers with kids and babies stay up to make sure their child hasn't gone low during the night.  I can only imagine what parents of babies with T1 go through. Babies can't tell you they are having a low or high sugar.  I hate this thing!

Myths & Misconceptions concerning T1D

Notice I am focusing on Type 1 diabetes. NOT Type 2, which has nothing to do with T1.

MYTH: Eating lots of candy while "gives you" Type 1.
Fact: T1D is an autoimmune disorder. An attack occurred on the pancreas so the insulin producing beta cells all died. 


MYTH: You can take pills for Type 1. (ha!)
Fact: No way, no how, can a person with Type 1 take pills.  Its insulin forever!

MYTH: Only kids can get Type 1.
Fact: I was diagnosed when I was 19. Nowadays, more adults are being diagnosed with T1.

MYTH: T1D's can't eat sugar.
Fact: WITHOUT sugar and carbohydrates, you die. End of story.

MYTH: T1D's are all skinny.
Fact: There are some T1D's who are not skinny.

MYTH: If you are diagnosed with T1 as a kid, you will develop T2 later in life.
Fact: Once diagnosed with T1, you remain a T1 the rest of your living days.

Personally, I'd like to kick the sh** out of T1D

It seems just about every person with Type 1 has composed a letter to his/her pancreas.  I did that previously, but I ended up deleting it. (See previous blog entry.) Of course we all have something to say to this organ which is a part of us and at one point in our lives, made everything SO much easier.  For some reason that we don't know, our immune system decided to make the pancreas history.
So here goes.

Dear Pancreas:

So its been 8 years since you went belly up on me. Did I make you work too hard? Honestly!! I think you and my gallbladder were in cahoots with each other! (I had my gallbladder removed in May of 2003.) Seriously, did you two discuss retirement while allll the other organs were hard at work? That's not cool.
You know what else is not cool? Attacking the insulin producing beta cells. These ARE the most important cells in the Islets of Langerhans. Beta cells produce the insulin, you know. Now the poor alpha, delta and C cells (which apparently have no function) are left by themselves.

That's all for now, but you will be hearing from me again!

P.S. I'm curious, do the C cells just hang out in the Islets all day? Lazy bums, if you ask me.

Writing is the best therapy

Years ago, I tried blogging about T1D on Facebook, but every time I wrote a new blog entry, I would end up deleting  it. People would ask questions, and I just could not bring myself to go into detail.   I wanted to be open and honest about my feelings regarding T1D and my other health issues, but I could not bring myself to do that.

 Now I am proud-I need to toot my own horn just a little here-that I can blog and keep a FB page also entitled "Living the Sweet Life since 2004." A bit cliche for a diabetes blog, but oh well.  Small steps, bit by bit. Even now, it is hard for me to write about T1D, but I'm making progress with this blog, right?
But I do feel better just writing a blog entry and/or posting a new status on FB.  I guess you could say its kind of like a therapy for me. I tried counseling soon after I was diagnosed with T1D, but the psychologist really wasn't able to help me much.  It was too soon, I guess. But that's a story for another entry. Perhaps the next one.

Thanks for reading!

Time is the great healer?

This past March marked my 8 year anniversary living with Type 1.  So far, (knocks on wood) I have avoided major complications such as DKA and all that scary stuff.  So I'm proud of myself for that. However, I still have a long way to go-as in the rest of my life.  I hear how the insulin pump is great and will help make things easier. So why, you might think,  haven't you gotten the damn thing already? My retort to that is I haven't felt ready and you can't rush these things. During my past visit to the endocrinologist (specialist who deals with endocrine disorders; diabetes, thyroid, etc)  the good doctor made it clear he was not happy with me. I believe I made it clear I wasn't thrilled with him at the moment, either.  He wants me to get a CGM-continuous glucose monitor.  Once again, I hear how much it will help me and how good it is. But the idea of going around with a pager like device attached to me is not that appealing. 

Not so Sweet

As  I said on my FB page, life hasn't been so sweet lately. Right now I'm coming down from a HI blood sugar. For those of you who don't know what that means, basically the reading was too high to register on the meter. I'm guessing over 500. UGH. Controlling T1D has been VERY difficult lately. I've also had joint pains particularly in my hands in the AM, and sometimes at night. I"m blaming that on the weather!

From the beginning....a quick recap

I was born two months premature and I have always been thin. When I was 8, my teachers told my mom that I was limping and walking funny. Thus began the Search. It took a few years to get a proper diagnosis. I went from one specialist to another. I was 10 years old when I was finally diagnosed with Juvenile Rheumatoid Arthritis. Many people, including my parents and family, did not know kids could develop JRA. 


I went on Naproxin and Methotrexate-no needles-yet! That will come later. It took years to get the JRA under control. Yet I still took ice skating lessons, roller skating lessons, etc. Swimming was a big part of exercise. There were physical and occupational therapy sessions as well. Sometimes, I didn't mind the PT sessions, I got to use a trampoline and an exercise ball. OTHER times, I called it Pain & Torture!


When I was 17, I had to have surgery on my jaw because I had TMJ-due to the arthritis. The surgeon also took out my wisdom teeth-so I haven't had to worry about them since!! About a week later, I began my senior year of high school......with a puffy face!!!! arghhh......but you know, I did survive!

CGM

Part of my reason for writing this blog is so I can educate people and address misconceptions about Type 1 diabetes, celiac sprue and JRA (known as Juvenile Rheumatoid Arthritis.  I would like to hear your questions, comments and perspectives, but Please keep them positive. Thanks!

Soon I will be testing out a device called a Continuous Glucose Monitor. It is not an insulin pump, though at some point in the future I will probably use one of those.  A CGM is about the size of a pager  which will receive signals from a sensor that I will be wearing all the time. My endocrinologist and I  are hoping this will be able to help track my sugar levels better to see patterns or sudden changes.  

One very important reason for my getting a CGM is if my sugar drops suddenly in the middle of the night the CGM will alert me in case I don't wake up. So far, I've been lucky. But I have woken up to sugar levels in the 3o's!! Not my favorite thing in the world......

Testing, testing, 1,2,3

Its true people take for granted what they have, until they don't have it any longer. I used to eat what I want and 8 years ago when I was 19 I was told I would have to change my eating habits. As many people who know me are aware that I haven't made hardly any changes at all since being diagnosed with Type 1 diabetes 8 years ago.  (Type 1 is sometimes referred to as Juvenile Diabetes. Those who have it MUST take insulin. There are no pills for Type 1. You also cannot lose weight and be cured as people can with Type 2.

Part of my reason for writing this blog is so I can address misconceptions about Type 1 diabetes, celiac sprue and JRA (known as Juvenile Rheumatoid Arthritis.  I would like to hear your questions, comments and perspectives, but Please keep them positive. Thanks!