Wednesday, October 11, 2017

Medical Update- can you hear me now?

Oh lambs. I've had some fairly interesting medical things happening and it's just so... it's frustrating. I told my therapist that I just want a label, a diagnosis, and a treatment. I'm just shuffled from one place to the next and nobody knows what to do for or with me. We wonder why people get discouraged and just kill themselves- I'll tell you why:


So here are my updates:
  • I'm being referred to OT/PT for an evaluation. It's the consensus that I should have seen them immediately after my AFE because early intervention is an important thing. I'm not totally sure what to expect from that but I'm told it is going to be a long appointment. 
  • Things they are going to look at are things like Auditory Processing Disorder. I've mentioned to several doctors that I can't handle any noise. I used to be a huge concert goer, I loved being in crowds, I could tolerate loud things. Now? I can't even handle hearing my family talk. Honestly, the sound of their voices make me so angry I can't stand it. I can't handle being in this house. I hear every single thing and all at once (if that makes sense) and sometimes it gets so overwhelming that I just shut down. It's like my brain gives up and I can't understand anything. So if someone is speaking to me, after awhile my brain just stops. I'm legitimately not listening to you. Apparently auditory issues are common after traumatic brain injuries, so who knows if this is a forever thing or not. 
  • I am counting down the days until I go back to my psychiatrist- I need something other than Wellbutrin. I'm so on edge and angry all of the time, I'm screaming at everyone for everything. 
  • The biggest thing? I got approved for disability! On the first try! The bad news is that my doctors and the Federal government have deemed me "unfit/incapable" of handling my benefits and all paperwork, so I had to provide them with the information for my "representative payee". It's one thing to lose my independence, but now I'm basically an invalid. There is no dignity in any of this. I'm just hopeful this helps me with my medication costs because I'm really worried about how I'm going to pay for them. I figure I have enough on my credit card for five more grocery shopping trips until the end of the year. Sigh. 
  • I took a TON of labs for the rheumatologist and so far, those have been kind of disappointing. The tests for rheumatoid arthritis and lupus both came back negative. What came back high is my C-Reactive Protein which means I basically have inflammation. It can be from an infection (I don't have any) or a "long-term disease", she said. It can mean I have inflammation around my heart, which means I'm a heart attack or heart disease risk. She said I'll have to have more labs at my next appointment, four weeks away, to see what direction I'm heading in. 
It's starting to sink in, like really sink in, that things aren't going to get better. That I have to figure out a new meaning to my life, a new purpose. I have to think about how I'm going to fill my days when Penelope and Lucy go to school. I feel like I have a lot more wrong with me that we don't know about, that the AFE/stroke/major blood loss did more damage than originally thought. Sometimes I wish I would just be admitted and a doctor from every department could just give me a head to toe evaluation. 

I need Dr. House, basically. 

And not just find a problem, but give me some kind of coping thing because how I'm living right now is awful. It's just getting worse and worse. 

No comments: