ehlers danlos syndrome · gastroparesis · Uncategorized

I Am Zebra Strong

*Content may be triggering. Talk about Gastroparesis flares (bodily functions malfunctioned) and mental illness*

I keep reminding myself that I am Zebra Strong. I am a chronic illness warrior. I got this.

Living with chronic illnesses is tough. Living with rare chronic illnesses is tough. Living with rare chronic illnesses is tough.

Sometimes I wonder how I’m supposed to live the rest of my life like this. Subluxations, dislocations, passing out, throwing up, chronic pain, chronic fatigue, flares, uneducated and uninformed doctors, few treatments, no cure.

This past weekend I had fun plans I was looking forward to. I was supposed to go to my sister’s house Thursday night and spend some time with her and my brother in law, go to Asking Alexandria’s VIP with one of my best friends and her boyfriend, see Asking Alexandria, Black Veil Brides, and Crown The Empire, stay over at my friend’s new apartment, and then go home with my sister to surprise our mom with a sleep over. I ended up giving my sister my VIP, we sold my ticket, and spent the weekend in a gastroparesis flare.

Last Wednesday morning I woke up feeling crummy. Headache, achy, exhausted…I slept most of the day. I hardly had an appetite, so I had a smoothie for lunch and another for dinner. By bedtime, I had an abdominal migraine. Shortly after, I started having reflux, the telltale rotting garbage burps. Once this starts, I know for sure its a gastroparesis flare, and I know its too late to do anything. I did the best I could do and took a Zantac, applied essential oils to my stomach, heated up my heating pad, and tried getting some sleep. Sleep never happened. I was so bloated, crampy, and nauseous that I couldn’t get comfortable. I ended up raiding my medical drawer and got out an emesis bag, I had run out of my stash from ER visits and found them on Amazon, I keep them on hand for gastroparesis flares. I tossed and turned. It wasn’t until 6:30 Thursday morning that I started throwing up. That was some relief. I went back to bed. An hour later, I got up to go pee. I ended up on the bathroom floor because I was going to pass out. I passed out 2 or 3 times. The pain and the throwing up was a major vasovagal syncope trigger. I was able to get myself back to my room after a while, grabbing another emesis bag on the way back to my bed. I was finally able to doze on and off for a few hours before actually falling asleep. When I woke back up, I suddenly felt like I was going to throw up. I felt around for the bag, but couldn’t find it. I rolled over to get up and ended up throwing up on my floor. Not one of my finest moments. I thought that throwing up would help stop those rotting garbage burps, but nope, those were still going. Later that night I was finally able to drink an Ensure. Aside from that, I felt very thirsty, yet I couldn’t drink enough. Drinking too much hurt my stomach. I could only take very small sips every 15 minutes even though I wanted to down my drink. Throwing up cause my left ribs and left shoulder to sublux, adding even more pain and discomfort to the situation. I weighed myself Thursday night and saw I had lost 6 pounds from throwing up.

Friday morning I woke up still feeling yucky. Still in pain, bloated, crampy, weak, fainty, and thirsty. I slept most of the day since Thursday took a lot out of me. I managed to drink 3 Ensures throughout the day and ate a small handful of oyster crackers. Uneventful, but still totally in a flare. On the bright side, the gross burps stopped, I was very thankful for that.

Saturday morning I woke up, still in pain, still bloated, still crampy, still weak, dizzy, not fainty, but also pale. I stepped on the scale, a total of 8 pounds lost. I know I need to lose weight. I want to lose weight. But this totally isn’t the way I want to do it. The gross burps came back in the afternoon. Ate a handful of goldfish, drank 2 Ensures, and sipped on fruit juice all day. I have no idea when this flare will actually end. I have no appetite, but I’m eating small handfuls of crackers or frozen blueberries so that I can take my meds.

Gastroparesis is the one EDS comorbidity that really gets to me. Not the pain, not the subluxations and dislocations, not the incredible fatigue, none of it compares to gastroparesis. I know I’m at risk to a lot of complications to EDS, but the one rearing its ugly head right now is gastroparesis. For my EDS, and notice I said mine, because other EDSers may have this and/or other scary things to worry about, this one just happens to affect me, gastroparesis is the scariest. Gastroparesis could be fatal, either through starving to death, or sepsis, or a number of other complications. It scares me. And I’m reminded of this every time I have a flare. I actually had to hide the gastroparesis support group I’m part of on Facebook because the death announcements were starting to get to me mentally. I couldn’t stand to see them. I’m the same way when there’s a death announcement about someone who died due to EDS. Either from gastroparesis, surgery complications, heart issues, taking their own life. Sometimes it really fucks with me mentally. I have diseases that people die from. Is my life in imminent danger right now? No, my heath is pretty good considering the circumstances. I try not to think how life will be health/medical wise in 5, 10, 15 years. I try not to think of what could happen someday. Its a toss up as to how things will go. But these reminders, they fuck with me. Laying on the floor not being able to roll over or get up. Losing weight quickly. Not being able to eat or drink. Going on to the support group page to look for help but seeing all the recent death announcements. Sure does have a way of screwing a person up.

I know a lot of you are thinking, “go to a doctor”. Its hard though. My gastroenterologist doesn’t help. He just tells me to lose weight and eat more fiber. He won’t even look into my issues because of my weight. Which, because of PCOS and gastroparesis, its hard to lose weight. Yes, I lose weight during flares, but I tend to gain or maintain when I’m not in a flare, no matter what I try. I think its because my body holds on to nutrients “just in case”. It knows what’s up, that’s for sure. It really is hell trying to get proper medical treatment while being overweight. I’ve been though so many GI doctors, I’m just going to to have to keep trying. I am lucky though because my primary care doctor is really cool. She loves having such a complicated case. When I go for my physical in March, I’m going to ask my doctor to see if we can come up with a “gastroparesis plan of action” for flares. Maybe going to Urgent Care and getting fluids or something. Anything to help me feel even a tiny bit better. She gave me Reglan to take, but that has side effects that scare the hell out of me, I don’t dare take it. I also need to ask her if we can order some vegan nutritional drinks through my insurance. Everything I drink during flares contains milk, which I’m allergic to, but I can’t afford any of the vegan ones out there. I know that the milk doesn’t help, its probably causing more inflammation, but I need the nutrition.

Even though this sucks, I will not give up. I’m going to continue to fight. I’m going to continue to educate others and raise as much awareness as I can. I don’t know what the future holds, but I’m going to keep holding on so that I can see it. Maybe better treatments will come soon. Maybe there will be a cure in the future. There’s so much to look forward to. I got this. I am Zebra Strong.

 

 

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