Saturday, September 28, 2013

I'm the Long-Lost Blogger

I've grounded myself from blogging (just for a little while) because of too many things I need to do. I have paperwork for disability and other stuff. So I try to focus on what I need to do, not what I want to do. But this is remarkably therapeutic. 

Plus I've had double the normal amount of doctor's appointments as usual. So this'll be a mini-update...

Short story: my new primary sent me to: get bloodwork done; a sleep study; an immunologist who did bloodwork of his own and allergy scratch tests (and wants to do allergy shots at about $15 a pop, every week--hell no, I'm broke!) and sent me to get a CT scan; and next up a full-blown 3-4 hour psych eval. She's thorough and wants to see if CFIDS isn't my lifelong trouble and if I was misdiagnosed. It's the perfect time for a medical witchhunt, seeing as how I have no money for my regular co-pays ($90 a week on PT and therapy). Then again, I have nothing but free time. 

Monday (two days away) I'm getting a neurostimulator put into my spine. It's a trial so I'll have wires sticking out of my back and connecting to an external battery pack. It comes out Friday. When it's permanently done the battery pack is surgically implanted in your hip, sort of like a pacemaker. It will be put in with an epidural needle so it should suck horribly. 

Hopefully I won't get this permanently because it sucks worse--more than the pain. But it's one of only 2 remaining options. The other is having a rib or two removed (this is very likely, but I don't see my Hopkins surgeon until Nov 20 to discuss). The ribs HAVE to come out, as far as I'm concerned. I was born with 2 extra ribs, one on each side, and on my bad side it can be seen on my MR-neurography that my regular top rib and my floating rib are compressing the nerves. So ciao, Cervical Rib and First Rib. 

Anyways that's my quickest update possible. The better part of this blog is Part 2 of that gratitude blog, where I posted all the amazing things people messaged me. 

 This note came home with Kevin on Friday afternoon. Kevin told me the kid, who was on JV baseball last year and remembered me being around at games, just randomly asked if I was better, if that surgery I had during baseball season worked. Kevin told him no, and with that Dashawn decided to write me this amazing letter. In my thank you card (which Kevin will deliver on Tuesday) I told Dashawn his note came at such a great time because I had a scary procedure on Monday and needed that boost of positivity. 

I've also gotten a lot of love on Facebook and Instagram:

"Shanley, I can't imagine all the things you are going through but keep fighting.  I hope you feel better soon."

"Hi honey- saw your recent posts. I hope everything is okay. Let me know if you need anything, please"

"Wishing you well Shanley! I think about you all the time and check your blog for updates every few days.  Know that I'm sending you love across the country."