& the GP says

Remember the post I wrote about being disabled & wondering if I was? Well I now have the answer, I am.

I went to see my GP* yesterday to discuss the results of the trip to Mayo & to decide where we are going. The appt lasted 45min & we discussed tons. He did ask how I was feeling & how I'm handling this. I told him I've had a few down days, but right now I think I'm overall just fine & coping well. I was also referred out to podiatry for orthotics, cardiology for an echo & PT/OT for whatever they can do. I did have him check & see if my B12 was up to a nice happy level (it was low about a year ago & I've been on supplements since) & check my vit D, cause that's often low in EDS folks. He wants me to keep an appt down at Mayo for OT since they would have access to more gadgets & thingie-bobs to help me do stuff. He was certain that the one here wouldn't have as much as I would need. After a month I'll go see him again & see what's up with what from the appts.

We talked a lot about my ability to do things & my pain levels & how often I'm popping stuff out. I made the comment that while we couldn't fix me, I wanted to make sure we slowed down the damage as much as we could. I also talked about what I could do 5 years ago before I got pregnant the last time. I told him I thought I was on a razors edge before I got pregnant & that the relaxin was all I needed to push me over the edge. He did ask if I was done having children & I told him yes I was. Based on his body language while we talked he doesn't think I'm going to be much better than I am now, but he does think we can slow things down. I can tell he read the stuff I gave him last time & looked up more from how our conversation went. I gave him some more info & he said he'd read it, which I'm sure he will. I told him I think I have a structural issue & that's what my everyday headache is & he said it totally could be. He said on his own that just because a laying down MRI is fine doesn't mean there isn't a structural issue, even on normal people there are changes between laying down & standing up & on me there definitely would be.

Got a call from PT/OT for an appt to see what they can do for assistive odds & ends. She asked what sort of things I would be needing (cause I'm 99.99% sure she had no clue what EDS is) & I gave her a 1-2 line run down on my issues. She asked if I had a wheelchair already, I fibbed & said no since the one I have is a bulky travel chair that isn't quite the right size. I don't think my insurance would cover one since I wouldn't be full time, but hey never hurts to try. I go next week for that & based on what they have/do I'll figure out how soon I want/need to go to Mayo. They did offer an appt for tomorrow, but I can't get to that. She was a bit worried that an appt at the end of next week was a long way off, but I told her this is my everyday life. I have some coping skills/tricks & they would bide me thru for another week. I told her I have Poland's Syndrome too. I thought it was kinda nice that a medical place cared if I was gonna be ok.

*Ok, he's really an internist, but that's long to type & I hate the term PCP, so my doc gets a small demotion when I type about him. He's pretty laid back so I think he'd understand.