I’m in waiting rooms several hours out of each week. I’m such a professional patient, I have a supply of waiting room necessities in a bag I can grab on my way out the door. I actually may make an entry dedicated to this. I know a lot of my readers have the same kind of schedule, so maybe we can compare notes on the ultimate waiting room kit! Anyway, after today, I will need it because I’m soon to have more waiting room time!
I was actually so excited Tuesday when my visiting nurse and I spoke (see last post) and was planning to stay downstairs the next day to be ready in case she just showed up. Well, she never showed and I haven’t heard from her since. I hope all is OK with her personally! The tough part for me is the waiting like that is such a stress on my body lately, that I was in no shape to do much of anything the next day.
Today, I managed to make it to therapy. I’ve been barely holding it together psychologically, so I needed to get back on schedule. I then went straight to my internist for a follow up on a severe vitamin deficiency she’s been treating me for. She had been the one to talk me into going to the ER and agreed with the idea of rehab. Needless to say, she was beyond pissed at how I got the brush off from the attending physician in the North Shore ER. She also confirmed they never called her! No wonder I was written off as a hopeless case. They didn’t even bother to speak to any of my personal docs and apparently read that my disease is progressive, so why bother at all? Yes, this confirms what I already knew about most doctors.
She suggested I see I neurologist I actually had seen years ago for other issues, long before Ehlers-Danlos Syndrome was even a thought. She thinks if anyone can offer a suggestion, it’s him. I’m just afraid her assumption that there must be an EDS specialist in New York is false. I’ve searched high and low. If there’s a doctor with the slightest interest in EDS, I’ve already contacted or seen them. It can’t hurt, though. I’ll give in a try. I do remember this neurologist to be knowledgeable and well-connected.
I was supposed to see my dearest friend this evening for the first time since she had kidney surgery. I just can’t do it. I’m in so much pain. The nausea has improved, but I’m so distracted by the throbbing in my ankle. I really hope we can get together soon. I’m not allowed guests here, so it’s definitely a challenge when I’m not well and isolated as it is.
I’m trying to stay positive simply because I have no other choice! I pray nothing else comes up in the next few weeks, because I can’t even manage what I have on my plate at the moment. I’ll make the 2 appointments my doctor suggested on Monday. Right now, I need rest!