Let’s Get Serious & Talk Chronic Illness, Shall We

As I’ve alluded to in previous pages and posts, I live with two debilitating chronic illnesses. The first is Type 1 diabetes which I was diagnosed with at age 24 (8 years ago). The other chronic illness I have was caused by the diabetes and that one is called Gastroparesis (GP). GP is a very rare, disease that hardly much is known about. In fact, it is part of NORD (National Organization of Rare Disorders).

 

WHAT IS GASTROPARESIS?

What the hell is Gastroparesis, you ask? I’ll tell you… According to the NIDDK (National Institute of Diabetes and Digestive and Kidney Diseases), GP “is a disorder that slows or stops the movement of food from the stomach to the small intestine. Normally, the muscles of the stomach, which are controlled by the vagus nerve, contract to break up food and move it through the gastrointestinal (GI) tract. Gastroparesis can occur when the vagus nerve is damaged by illness or injury and the stomach muscles stop working normally. Food then moves slowly from the stomach to the small intestine or stops moving altogether”. If you’re interested in learning more about this rare disease, Click here for more information about GP.

 

 

Diagram of Digestive System

 

There is no cure and hardly ANY treatments! The only treatments are a cocktails of meds or a gastric pacemaker (aka a Vagus Nerve Stimulator). Even though my diabetes is bad… like really bad, it’s the gastroparesis that puts me in the hospital for 5-6 days at a time MANY times a year! With diabetes there is no cure… but at least there are many treatments for it. Like, for example, doing manual insulin with a needle wasn’t working for me because I have a brittle form of diabetes (which means I have uncontrollable blood sugar highs and lows). So I had to get an insulin pump to make sure I have insulin going into my body at all times. With gastroparesis, there is no treatments left after the gastric pacemaker. What do I do if it doesn’t work?

 

HOW DOES ALL THIS MAKE ME FEEL?

Living with one chronic illness is bad enough, let alone two! There are days that I am so weak I can’t move from the couch. And of course depression kicks in when you’re stuck on the couch. Then there are days when I have flare ups and I’m so sick that I can’t stop vomiting, I’m dizzy and delirious, and those are the days I get to take an ambulance ride to the hospital. This past year has been the worst for my GP. I’ve had 6 hospital stays, all that lasted longer than 3 days. And when I’m really sick with a flare up, I can’t even explain to you how debilitating it is for me.

 

I’m on SO many medications and most are 3 times a day and it’s the most frustrating thing to have your life rely on medications! It all makes me feel like a BURDEN! It’s also very embarrassing to be on a first name basis with the EMT’s in your town because you’v ridden in their ambulances so many times… or knowing all the nurses on your unit because they’ve taken care of you so many times. And don’t even get me started on the nurses and doctors who think of me as a “frequent flier” and hate me because I’m on methadone. I’m just being honest! My fiance and mom have to basically do everything for me when I’m sick (which lately has been more often than not) and they have their own lives to take care of. But that is just that evil little voice in my head telling me I’m a loser and that I burden everyone around me. I have to remember that it isn’t the TRUTH!

 

And I haven’t even mentioned what a day in the life of a type 1 diabetic looks like! Pricking my finger 8 times a day, constantly engaged in a battle of highs and lows. For example, I am NEVER hungry because of my gastroparesis but as a diabetic on insulin, I have to eat because if I don’t I’ll get a blood sugar low. This creates a total catch-22 for me because every day I get lows. So to treat my low I take glucose gel and eat some carbs to bring me back up. Then within an hour or two, I’m back up to 500. And for those of you who aren’t familiar with healthy blood sugar levels, that’s very high! So then I treat the high by taking some insulin and then the cycle starts all over again. Going to sleep not knowing if I’ll get a low while I’m sleeping and slip away and die is probably the scariest thing about having BRITTLE type 1 diabetes. But we deal with it and we go on. Because we’re fucking survivors… we’re WARRIORS of chronic illness!

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