I was extremely disheartened after my appointment with the surgeon. I couldn't go longer than about 20 minutes without breaking into tears for a good two days. I guess it's one thing to know something is wrong with you, but it's another to realize how badly your body is turning on itself. The thing that was really bothersome was wondering if I had other health issues in addition to EDS. EDS, the form I have, is not fatal in the least bit. It won't shorten my lifespan at all, it is easily manageable if you can do the proper workouts and bracing prior to it getting bad. However, most treatments for other joint disorders are contraindicated for EDS because it erodes our joints and connective tissues quicker. So when the surgeon told me that I had a Degenerative Joint Disease, as well as a possible nerve issue it really freaked me out. After I finally calmed down after my appt I talked to my EDS support groups. Both DJD, otherwise known as Osteoarthritis, and Nerve ending issues are symptoms of EDS - not necessarily a separate disorder. Both are caused by the destruction of our connective tissue. So even though neither should be taken lightly at least it may not be completely unrelated.
Not being able to use my arms right now really sucks. I don't even know another way to put it. It just sucks. But, it is what it is and being depressed about it isn't going to make it change. Not saying I'm happy about it, in the least bit. Nor will I give up fighting for the treatment that I need. But hopefully my days of just complete despair are over. I may not have a body that is 100% functional but I can still be a good person and a good mom. I can still leave a positive mark on this world. So for now thats what I will concentrate on. I'm sure I'll still have set back days where I get extremely upset and disheartened, but those days should be the exception rather than the norm.
Hello y'all! An Introduction Video
1 week ago