Living with Chronic Illness is NOT Easy!!

Can this really be happening? Could I really have just ruined Thanksgiving for my family because of this fucking HORRIBLE illness gastroparesis? Well the answer is yes… yes it happened and yes I ruined my families holiday! All because I was SICK… the dreaded 4 letter word in my house. The word everyone is terrified to hear come out of my lips! When you live with chronic illness, you come to expect and fear your flare ups! Everyday things that normal people can do like eating freaking lunch, going to the bathroom, etc… are things I am TERRIFIED to do!

 

It started the day before Thanksgiving when i woke up with a horrible migraine. And since this wasn’t my first rodeo, I knew what that meant… a flare up was coming and it was coming fast. So I immediately loaded myself up with all the emergency meds I had on hand (things like Fioricet for migraine, Zofran and Compazine for nausea, Reglan for nausea and to help me digest, and since it was really bad, I took some of my Klonopin to ease my pain and anxiety. None of those meds helped at all because I was throwing up so rapidly and violently that I couldn’t hold a single pill down.

 

That migraine kept getting stronger. As I started vomiting uncontrollably, my insides felt like they were being ripped out of my stomach and then stomped on! The pain gets so bad in my stomach that sometimes the only relief I can think of is to die! I literally wish for death when the nausea is so bad that I can’t even hold my head up and the room is spinning out of control. Now please don’t take this as me being suicidal because that’s not what I mean and that’s not what this is. This is simply about QUALITY OF LIFE! Simple… so you’d think. What I mean is that I can’t live this quality of life anymore and go one like everything is “going to get better”! IT’S NOT GETTING BETTER, IT HASN’T GOTTEN BETTER, and to be honest, IT’S ONLY GOING TO GET WORSE!

 

I can feel my body withering beneath me and it seems like nothing I do helps! How do you think positive about a situation when you know for a fact that it’s only going to get worse, not better? And I’m well aware that this disease is progressive, chronic, and terminal and that scares the SHIT out of me! I don’t want to die before I’m 40!! It’s embarrassing because I have to sit out on LIFE when I so want to be a part of things! I used to love to kayak, to swim, to climb and hike, and although I still love those things, I have to sit most of them out because of my health. It’s beyond fucking frustrating! I’m expressing my REAL, RAW feelings here and hopefully if only ONE person gets inspired to get their health in better condition, I’ll feel like I’ve contributed my part! But I am resilient and ALWAYS seem to get back up when I get knocked down. So somehow, although i don’t yet know how, I WILL get through this illness and this little device in my stomach WILL work! And that’s just all there is to it!

 

All in all, Type 1 diabetes is ultimately the culprit behind it all. And most of the time I feel like it’s my fault. When I got diagnosed in 2010, I did NOT take it seriously at all. Although I was sober and taking care of my mental health, my diabetes continued to go untreated (all through my doing). As a result, I’m in the position I’m in now. I’m lucky I haven’t lost a limb yet because I am a smoker… but not for long. Since smoking is wreaking havoc on my health and illnesses as well, it’s at least one thing I can do to help myself. And I’m pretty sure if I can kick heroin, I can kick cigarettes! So my quit date will be January 1st! That gives me a whole month to cut down to nothing, with the help of any meds, patches, pills, or WHATEVER they can give me to quit!

 

There’s some pretty awesome books out there for those of you who are, like me, suffering with a chronic illness that’s ruining your life, controlling your life, or otherwise affecting you in a negative way! Here are some links below:

You Don’t Look Sick! Living Well With Chronic Invisible Illness by Steven S. Overman MD – Great book that I have yet to read but that’s been recommended to me over and over. I’m actually asking for it for Christmas!! 🙂

How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers by Toni Bernhard – Excellent resource for both people who suffer from chronic illness and those of us who take care of them. 

Chronic Resilience: 10 Sanity-Saving Strategies for Women Coping with the Stress of Illness by Danea Horn – I can’t WAIT to read this book. I just bought it today and it can’t get to me fast enough! LOL!

If you’re interested in reading an AMAZING article about living with chronic illness, check it out here. It’s called “Living with Chronic Illness is Relentless”! This quote from it really stood out to me and hit home: “Living with chronic illness is like climbing Mt. Everest over and over again, every single day, except the territory always changes slightly. Nothing is predictable, and it’s really fucking difficult!”

And if you’d like to read more about my struggles with chronic illness, check out my other post here.

As always, sending all the love, light, and positivity I can muster to all of you now and during this Holiday season! <3

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!