Health Update - October 2022

I just realized that it has been 2 years since I last posted a health update. I figure I should probably do that, huh?

For reference, my medical conditions are:

-Ehlers-Danlos Syndrome - EDS (A connective tissue disorder that causes my joints, skin, and blood vessels to be too stretchy. This results in frequent partial or full dislocations of many joints.)

-Dysautonomia (My autonomic nervous system can't control my body functions properly. For me, it results in my body not being able to properly control its temperature and Postural Orthostatic Tachycardia Syndrome)

-Postural Orthostatic Tachycardia Syndrome - POTS (My heart rate gets raises when I sit or stand up. Without medication it would get as high as 160, which can cause you to faint, but with my medication, it isn't much of a problem anymore.)

-Mast Cell Activation Syndrome - MCAS (A disorder that causes the bodies mast cells (allergy cells) to react to things they shouldn't. This causes allergic reactions that can range from uncomfortable to life threatening. My biggest triggers are smoke, cleaning products, and most perfumes/colognes.)

-Gastroparesis (A partially paralyzed stomach.)

-Chronic Migraine (Frequent very severe headaches)

-All of the conditions listed after EDS are commonly found in people with EDS. Doctors think that the faulty connective tissue may be the cause.

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Thankfully, my Mast Cell Activation Syndrome that was in such a dangerous place in 2020 has calmed down a lot. I got on a new medication and I guess also just got lucky, and I haven't needed an epi-pen since Thanksgiving of 2020, so almost 2 years now. I still have to take Benadryl pretty much everyday, often multiple times, but it's usually because I'm really itchy or flushing red on my face and chest, which I can deal with. I can now eat most of the foods I couldn't back then. The biggest food difference is that I no longer have reactions to corn products. That's fantastic because you really don't realize just how many things have hidden corn in them until you have to avoid it.

I spent a lot of this year in vision therapy to help with severe double vision. My vision had gotten so bad that I was having trouble reading at all, so I went once a week to do a lot of eye exercises to train my eyes to work with each other and to get better at focusing them. It has helped a lot and I was discharged from vision therapy last month. It also helped a lot with my balance. I still  have some trouble, but it isn't nearly as bad, and I have some exercises I can do at home that will continue to help.

I am still going to physical therapy once a week to help strengthen my joints and I try to keep up with doing some exercises at home as well. It has really helped over all. I don't have to use any braces when I go out and I've stopped using my walker. I had a setback in the spring of this year when I fell and dislocated my ankle, but it has healed now except for some occasional pain and popping. Unfortunately I've had to reduce the intensity of the work I do in physical therapy because of extreme fatigue and muscle weakness.

If you've been here for a few years, you may remember that in 2019 my legs suddenly became too weak to hold me up or walk for some time. This has been a recurring issue, in both my arms and legs, seemingly caused by overexertion. Luckily, I am now able to recognize the signs when it first begins and can stop doing whatever is overworking the muscles to keep it from progressing. I still have to stop and can't really do much for at least the rest of the day, if not the next as well, but I've got a handle on it now. We've cut back my physical therapy quite a bit to keep this from happening while doing my exercises and now I never reach the point where it starts. I also experience extreme fatigue that we think is related. The fatigue is so bad that I will set my alarm for at least 2 1/2 hours before I have to leave the house so I can lie down for an hour after my shower and then take breaks while continuing to get ready. It sucks, but I'm learning to work with it. We still don't know what causes the fatigue or the weakness, though.

I'm not sure if I've mentioned, but a couple of years ago, I was diagnosed with mild gastroparesis. That means that my stomach is partially paralyzed and food doesn't move through it as fast as it should. It causes a lot of nausea and, for a lot of people, vomiting. Luckily I almost never throw up, but the nausea has gotten much worse over the last few months and I'm having a hard time eating. My doctor has referred me to a specialist for gastroparesis to try to get a handle on it. I'm really nervous about getting a new doctor in my world, but really could use some help with this constant nausea. Because my gastroparesis is mild and I'm overweight, I've always felt silly talking about it. Many people with it are quite skinny and some throw up everything they eat. Because mine is mild in comparison, I don't like to tell people for fear they'll think I'm lying or something. But even without throwing up, I've lost 15 pounds in a month and a half, so I guess I shouldn't feel so silly asking for help.

I think that about covers it. Hopefully I'll have a mod out for you guys soon. :)