Tuesday, October 22, 2013
Tomorrow morning is my SSDI hearing. I have no idea how I'm going to make it through the hearing. I'm not even sure if I'll find out a yes/no tomorrow or if I have to wait for the official judgement. My hearing starts at 9:30, but have to be there early to meet with my lawyer, have to drive there (in rush hour), and getting up early enough to be ready for when my social worker comes to pick me up - so I have to wake up about 6-6:30 am to be ready. Too often I don't fall asleep until 5 am, so I've gotta take meds to help me sleep, which will not make anything better tomorrow. My exhaustion is ridiculous.
Today I saw my vascular specialist about why I can suddenly hear my own heartbeat in my ear, sometimes so loud I literally can't hear anything else. Not really worried, but wondering what's up. (Considering I called early last week just to ask "should I see him?" and his scheduler got me in today as the last appt of the day from a cancellation - wondering if he snuck me in - instead of making me wait the 6+ weeks he's booking out, they took me serious but aren't seriously worried.) We made a plan of attack that he wants me starting ASAP. The unfortunate first part is stopping the Lyrica. It's not really doing any good to help with my pain, but come on! I already am immune to most painkillers and the 1 that does help shuts down my nervous system making it so I can't feel much but I can't function at all (I rag doll twice in the 30 small steps to the bathroom). 2nd step is he wants me seeing an ENT - ASAP (if I can't get in before the end of the month I'm supposed to let him know so he can pull strings) - to see if something went wrong in my ears. 3rd step is getting yet another look at the blood vessels in my neck to check for aneurisms or blood clots or something funky (doubtful but worthwhile 'JIC', even though I just had them looked at in August). He asked my thoughts, and I said my best guess is it's due to EDS, possibly from the suspected organ prolapse pulling everything else above it down too or just from the current meds I'm on that have increased my blood pressure to normal which is allowing blood to back up in my head when my neck is bent.
Best part of this specialist is that he not only listens, but he knows I know my body and my conditions so he asks my thoughts and worked with me to create a plan of attack. Though he thought I was talking a little faster than normal (for me) so they drew blood to check my thyroid. It's been tested dozens of times, but why not check it again? Perhaps getting my adrenaline under control might show some changes in other hormone levels.
I am so stressed I want to curl up in a closet and pretend the world doesn't exist. Unfortunately I can't. I have 18 appointments this month. That doesn't include picking up meds, getting new braces, trying to get a new walker and a cane, dealing with insurance companies, dealing with lawyers, dealing with county agencies, being harassed DAILY by wells freaking fargo, having no idea where I'll be living in 3 months, not having enough energy to run errands or make food to eat, etc etc etc. Being told my new LTD lawyer wanted a complete list of symptoms for all of my conditions was so overwhelming I couldn't even deal, so I had to have 2 friends help me (thanks Sherry!) to realize that just reading the list is overwhelming! I just can't even deal. Having no money at all doesn't make anything easier! My social worker is even telling me to start packing up my house, but when I bend over I pass out! I can't pack! Yeah, where's the closet I get to curl up in to hide from the world?