Wednesday, October 30, 2019

type 1 unclassified

When I was first diagnosed I had all the symptoms, unexplained weight loss, extreme thirst, excess urination. Still to this day baffles me how I continued to be sick for almost 7 months before i was diagnosed. It takes 1 blood test to find out you have diabetes. 
I went to the doctor at least 4 times during this period. No one suspecting a thing, in fact they suggested my parents bring me to a shrink because I was making it up for attention. 
I remember being terrified. Knowing I was dying and no one believed me. There are few things as frightening as knowing you’re dying and people telling you you’re lying. I remember I had this pair of abercrombie corduroy jeans which I loved and I gotten for Christmas. It was late April at this point and I had just worn the pants a few days before and they were back in my room clean and hung up. They fit me snug before the wash and I vividly remember zipping them then buttoning and letting go and having them fall to my feet. In the amount of days it took my mom to do the laundry (it couldn’t have been more than a week) I had went from 87 pounds to 63. I remember shaking and crying from fear and coming to my mother to tell her I knew I was dying. 
I then went back to the doctor where they finally (with their lack of intelligence it’s really a miracle they thought of it at all) decided to draw my blood and test me for a panel of diseases. 
On Friday April 29th 2005 I was visiting my mom at work; drinking a slush (oh the irony) when my moms boss ran up to her with the work phone; cordless phones were all the rage back then . 
Her boss looked terrified and I immediately knew it was something relating to me and my health. My moms face on the phone call was blank. 
I don’t remember who told me 
“You have diabetes” 
I just remember it was one of my parents. 
I will forever hate that, the fact that I wasn’t told by medical professionals. They told my mom that I needed to go to the hospital right away that they had a room set up for me. 

Upon arriving at the hospital we shortly learned my blood sugar was 998. To give you some numerous for comparison sake, 75-100 is normal. I remember them constantly coming in the room, shot after shot, finger pricks and syringes poking me everywhere all hours day and night. 
At one point my dad was getting heated and going back and forth with my mom asking “why do they need to keep poking her!” “Too many shot” “I’m going to yell at them to stop this is getting out of hand” 
The next time a nurse came in she (surprise) gave me another injection. He stood up from where he was seated on the bench beneath the window across from the bed. He angrily asked her why there were so many shots and that he wasn’t going to let them keeping doing this to me. 
He asked infuriated “when is this going to stop?!”
I will forever remember the nurses face as the blood drained from out of it. She was very uncomfortable about the fact that no one had said anything to use and she would have to be the one. 
She looked at me sadly; 
“Never” she answered. 

I have since had given myself over 2,000 injections 
And 29,000 finger pricks 

Type 1 diabetes. What is it? 
An autoimmune disease in which a persons own body attacks the beta cells inside the pancreas. You have a 1 in 20 chance of getting it if you have a parent with type 1; a 1 in 300 chance if you do not. I am the latter. 

I have been diabetic for 14 years 6 months and 2 days. That’s a long time to be sick. A majority of the world assumes you start to get used to it, because they do. That the highs that make you confused and lethargic, that cause you to call off work, call off plans you’ve had for months, aren’t so bad because you’re used to it. The lows that make you and everyone around you have to stop what they’re doing to get you something with sugar, that cause you to be sitting in the break room for the fifth time in one shift aren’t so bad because you’re used to it. That the comments people whisper about you “what’s that on her arm?” or the outright remarks to your face from strangers telling you “that’s what you get for eating badly!” don’t get to you because you’re used to it. That your entire intermediate and extended family know little to nothing about it, that you have to explain to people multiple times a week what it is. And the fact that you feel like constant shit every day of your life and will have to for the rest of your life isn’t so bad because you’re used to it. 

I can’t speak on behalf of every type 1. Certainly not those lucky ones who seem to have an eery amount of control over their blood sugar. But a good majority of us are certainly not “used to it” in fact i’d say quite the opposite. The continuing of days turned into years of dealing with the same shit is daunting. For a long time, I’d say 10 years, with this disease I had bad days. bad weeks sure, but on the whole I was “okay”. It’s because I held onto this hope that one day I would be better. That I wouldn’t have this forever, not for always. And then one day it hit me. I will never get better. I will only continue to get worse. And that my friends was the beginning of my spiraling depression. 
“Chronically ill depression” is a term used to describe exactly that. When you are depressed because you are sick and will never get better. 

My diabetes has never been “controlled” I like to use this term loosely because using it implies that it is someone’s job to control it. Regarding this, things can be tricky. Yes there are certain things you should do, but that doesn’t guarantee that it will work, that it will be “controlled”.

Let’s break some things down to better explain how to reach some level of control:

-There are two types of insulin- long acting and short acting. 
Long acting is released slowly throughout the day (because yes, contrary to most belief, type 1’s need insulin at all times because insulin does more than convert carbs into energy for your body to use) Short acting is to cover the food you consume or simply because of your blood sugar being high. 

-If you are on an insulin pump there are two terms used-basal and bolus. 
Basal rate is similar to “long acting insulin” as in it does the same job. However it is not different insulin. On an insulin pump you only use short acting insulin. But like mentioned before you constantly need insulin in the body. The insulin pump is programmed to release a certain amount of insulin every hour; the basal. 
The bolus is the amount of insulin you receive to cover a “high” (high blood sugar) or carbs you are about to consume. Fun fact: there is nothing I would be able to eat and not give myself insulin for. Even if I ate strictly vegetables and never needed to bolus (highly unlikely) I would still need a basal rate. 

Seems simple enough. And by simple I don’t actually mean simple. I mean a pain in the arse. However if tried by working with your doctor, most can come up with the correct amount of basal and bolus, or long term and short term insulin. 

But what do you do if they can’t? 
What do you do if you’ve been to more than 8 endocrinologists over the past 14 years and no one knows what to do? 

You take your fine ass to Mayo Clinic. 


I’ve decided to reboot my blog and talk all about my illness and trying to get a hold of it.