I have realized that it has been years since I gave a real update on my health. So I figured I should do that.
For reference, my medical conditions are:
- Ehlers-Danlos Syndrome (EDS) - a connective tissue disorder that makes my joints, skin, and blood vessels more stretchy than they should be. This causes frequent partial and occasional full dislocations of my joints and a lot of trouble accessing my veins for drawing blood or placing an IV.
- Mast Cell Activation Syndrome (MCAS) - a disorder that causes the bodies mast cells (allergy cells) to react to things they wouldn't normally react to. This causes me to have a lot of bad allergic reactions.
- Dysautonomia - a condition that causes my autonomic nervous system to malfunction. Your autonomic nervous system controls the functions of the body that you don't control yourself. In my case, it causes me not to be able to regulate my body temperature properly, and is the cause of my Postural Orthostatic Tachycardia Syndrome and Gastroparesis.
- Postural Orthostatic Tachycardia Syndrome (POTS) - a condition where the heart rate jumps up too high when the person is upright. This can cause dizziness, shortness of breath, and fainting.
- Gastroparesis - a condition where the stomach empties too slowly. This causes nausea and often vomiting. Mine is mild, so I can keep it under control with anti-nausea meds
- Chronic Fatigue Syndrome (CFS) - a condition where you are constantly exhausted and will never feel fully rested no matter how much you rest. Exercise and activities can make it flare up for days.
- Visual Impairment - Difficulty seeing that can't be corrected by glasses and that gets in the way of doing every day stuff
My EDS has been ok. I currently have 3 places on my body that are giving me trouble, one of which has been an issue for years and I'm just used to it. My right shoulder is painful and keeps partially and sometimes fully dislocating. I don't know what I did to my left elbow, but it is also very painful when I move it. And lastly, the issue that has been going on for years, my pelvis goes all crooked and my physical therapist has to realign it every time I see her. It causes a lot of lower back pain. Overall, however, I think my joints are ok. The only brace I'm wearing is an elbow brace, and I don't even wear that most days. Unfortunately, I am struggling with pain control on bad days because I have been told to stop taking one of the pain medications that I took for a couple of years because it was eroding my stomach lining. However that leaves me with only my prescription pain meds that I only get a small amount of to last me 3 months, so I have to be very choosy about when I take them. It's frustrating, but I do have an appointment with a pain management clinic in the next few months, so hopefully they can help me out with that.
My MCAS kind of waxes and wains in it's intensity, I guess. I have a baseline level of reactions that I usually deal with that generally has me taking Benadryl about once a day if I don't leave the house (more if I do), but then I go into theses flares that last about a month where every few days I will go into anaphylaxis (throat swells shut) and I end up in the emergency room. I haven't had a flare in a few months, which is wonderful.
My Dysautonomia/POTS/Gastroparesis are all under control. There really isn't much to do about the temperature regulation issue, but since it's colder outside right now, I often end up taking a warm bath when I get home from an appointment to warm up, or else I'll stay cold for a few hours. My POTS is very well controlled as long as I make sure to take my meds on schedule, and my Gastroparesis is controlled with one or two anti-nausea pills a day. With that I can usually eat however I want once the pills kick in.
Finally, moving on to CFS. This one is a new diagnosis since my last update. I was diagnosed in December of 2023, but have had it since at least 2019. It is what caused my severe leg weakness back then, and still can cause weakness if I overdo it in physical therapy/physically generally. I hate it, but I'm learning to work around it. I set my alarm for 3 hours before I have to leave for appointments so that I can rest in between tasks while getting ready. I use shower wipes a lot of the time instead of taking an actual shower because showering is exhausting. Sadly I have to spend most of my time resting. I can't stand up for very long, and will often end up sleeping the entire next day after going out. I pretty much only leave the house for medical appointments. I spend most of my time either reading fan fiction on days when my eyes are more cooperative, or watching youtube or movies/shows on days when I can't focus my eyes as well.
