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b o o (health and other updates)
4 years ago
Hi, I'm attempting to live slightly again :') Lol I think the last time I tried to be active on here, it was Halloween as well. How conveniently fitting haha.
I felt as though I should make an update journal instead of just posting out of the blue without saying anything. This is a bit of a rough journal for me to make, but I want to put it out there.
Long story short, the health problems that I was having in 2018 are still issues that are relevant today.
On top of that, more health issues have shown up as well. Some of which have had light shed on them because I've been on a bit of a journey to try to figure out my health. I've considered being vague about everything, but it's clear that this will be an ongoing issue, and I don't see the point in trying to push it under the rug. Especially because the hand pain that I've been struggling with may be explained by this, so it will inevitably continue to come up.
About a year and a half ago, I stumbled upon a Youtube video that discussed a condition called Ehlers-Danlos Syndrome (EDS). When I saw this video, I became interested, as it was uncanny how much it reminded me of the health issues I've dealt with. Upon looking up more information and videos, I drew even more connections. I've had a gut feeling that this is what is causing my problems, ever since I saw the first video I watched about EDS.
EDS is a hereditary disorder that affects the body's connective tissue. Connective tissue is prominent in many parts of the body, so as you'd expect, it can affect many things. This is why EDS has so many comorbidities (linked conditions). EDS can cause things such as hypermobile joints (double jointed), dislocations, subluxations (partial dislocations), gastrointestinal conditions, autonomic conditions, heart conditions, chronic muscle/joint pain, etc. There are 13 known types of EDS. The symptoms and severity of EDS can vary greatly, case by case.
(hopefully my explanation is ok, please research for better info if you're curious, there's a lot to it and I feel like I can't explain it as well as I'd like)
At this point, I have seen multiple doctors over the last year and a half, and most seem to think that I may have EDS and/or comorbidities of EDS. I won't go into the comorbidities currently, but I will say that I don't personally deal with dislocations at this time, thankfully. However, I definitely deal with constant chronic joint/muscle pain and joints popping and clunking constantly that seems to be worsening (I suspect the clunks to be subluxations although I'm not fully sure). As of late I've also been struggling with a lot of stomach issues, fatigue, lightheadedness, and trouble concentrating.
However, of course, I know that there are other possibilities that may be the cause of my health issues and that EDS may not be the cause. Unfortunately, the diagnosis process for EDS isn't the easiest. It is not a very well known condition, so not many doctors know it exists (from my understanding, some do not even believe it exists). The next step for me would be to get a genetic test to see if I have any of the types of EDS that would show up. However, the most common type (hypermobile EDS), does not have a known gene so it does not currently show up on genetic tests. If I received a genetic test (which currently I do not plan on doing this year) and none of the types show up, it would be assumed that I may have hEDS. At that point, I would need to be able to exclude any other possible diagnoses (I believe I've already confirmed that I do not have any autoimmune disorders that may be causing this, other things may still need looking into). Then finally, if I check enough boxes off on the official EDS diagnostic checklist (which I have already confirmed with my physical therapist that I do), THEN I will be able to be officially diagnosed (assuming I can find a doctor who will diagnose me, unfortunately my physical therapist can't and my primary won't).
Basically, right now, I am trusting my gut, and all of the separate comorbidities and symptoms that line up seem to heavily point towards EDS. I just don't feel comfortable saying 100% without a doubt that I have it, right now. Perhaps some of that is denial lol.
Unfortunately, if this is EDS, it is something that will be present for the rest of my life, as there is no known cure. However, there are ways to deal with the symptoms and comorbidities. I am hopeful that with time, I can improve and can hopefully have more good days than bad ; u ;
TL;DR - I may have Ehlers-Danlos Sydnrome which may contribute to the hand issues that I deal with (among many other health issues), but at the very least my body is very questionable.
(don't be surprised if I disappear again lol)
On a lighter note, another hobby that I've taken up recently is rock tumbling. I used to love rocks as a kid. Perhaps the local rock shop closing is what ended my interest back then. However, I recently learned about rockhounding and collecting rocks locally and I've had a blast with that, as well as tumbling what I've found! Who knows maybe I'll post some finished tumbles on here some time lol.
As for artwork, I think that my plan is to stick to adoptables, currently. The free bases that are available are so incredibly helpful to me, so that I don't have to strain my hand as much.
Anyways, that's about everything that I can think of to say currently. It's been hard to concentrate lately, so I hope that everything I've said makes some sense! Thanks so much for reading. I hope everyone has a wonderful day <3 Please stay safe and take care of yourself!!
Its okay! The good news is if I can confirm that this is what it is, I can hopefully get the help that I need for it :3 And SO MUCH will make sense haha.
I really appreciate it, thank you so much <3 <3
YESS OMG wow I never expect people to be into it as well, but it seems to be more common of a hobby than I thought perhaps lol (my physical therapist also likes it which is great ahaha). I'd be super interested to see your collection sometime if you ever wanna talk shiny rocks, please feel free to hit me up on Discord anytime, just let me know if you need my tag to add me! Also if you rockhound, I uh may totally be down for trading if you're ever interested lmao, we have a ton of cool banded agates in our area! They're similar to Crowley Ridge Agates. Do you do any rock tumbling as well or only collecting? :3