It’s been a while since I last posted. It’s also been a while since I’ve caught up on reading my blog subscriptions! I apologize! I don’t really have a reason other than that I am so exhausted all the time. My POTS is acting up really bad lately. I’m back to being extremely underweight from muscle loss. I’ve only been able to gain a pound back. With EDS it can be extremely hard to gain back muscle. I’m low on protein so I’m doing what I can to increase my protein intake. Lots of peanut butter, edamame, and carnation instant breakfast with soy milk.
Currently, my custom made wrist splints are cracked, so I am wearing some other braces that aren’t as good but are doing the job. Because of the muscle loss, my knee braces are way too big and doing more harm than good, I am unable to wear those. I have my hard Arizona AFOs, but I still can’t walk very well. The tendonitis in my ankle is really bad at the moment, nothing seems to be helping. I’ve had to stop physical therapy because it was hurting me. Needless to say, I am pretty much couch bound. I can’t drive, can’t walk very well, I’m extremely weak, and to top it all off the downstairs bathroom is broken!!! In the morning (or whenever I wake up) I get everything I need for the day and come downstairs. I pretty much stay on the couch, get up the few feet to go to the bathroom, or to get something to eat or drink, and then lie down for about 15-20min because of the POTS. So, we have to use the upstairs bathroom now. Good thing I don’t “go” very often (ok, maybe a little TMI, but such is life).
Next up in the world of suckitude, I was denied SSDI by the QA department after being approved by the state. Now I have an appeal going and won’t hear anything for at least 3-4months. In the meantime my boyfriend and I are living off of his salary and its barely enough for one person, let alone 2 and one being ill.