Medically On My Own
Friday, September 18, 2020
I have given up on medical help at this point. No, not because there is anything wrong with the actual doctors I have seen. The doctor’s office that ordered blood tests in February but had to bump the go-over-labs appointment due to Covid? They have never followed up. No idea what those labs say and cannot handle the phone conversation it would require to find out. The neurologist who was finally able to see me after a year of trying to get in (lack of specialists on the whole in the area and he is the only one within an hour and a half drive who takes MediCal) immediately diagnosed and ordered referrals for a neuropsych evaluation and therapies based on it. The next week everything shut down for Covid. The rehab center he set up referrals for called me and saw me anyway. I though the neuropsych was supposed to come first but assumed they knew better. Went in. Physical therapist realized early on all of my symptoms were cognitive overload based, consulted with the other therapists I was referred to and all agreed – until that eval was done, they would be shooting in the dark. Fine. Went home. Hubby called neuro’s office to ask how that referral was going and where so maybe we could somehow help expedite it on our end. Neuro’s office staff: We hadn’t actually processed that one. No one is seeing anyone due to Covid anyway. When he mentioned that the therapists sure had, they got annoyed and said they’d look into it. We didn’t hear from them again until July. That’s right, July…. when they called to confirm a follow up appointment we never made. We told them we hadn’t and would not be making the drive since little had changed and reminded them what had gone on with the referrals. We got another vague, “we’ll cancel the appointment then and we’ll look into that referral for you.” It’s September. Still waiting.
Yes, I have made progress. Time and trial and error have helped some.
•I can read better now. I still don’t remember anything beyond the general gyst of what I read for long but many of you know that is a huge improvement over last year.
•I have retrained both of my hands to write properly repeatedly. Yes, repeatedly. We’re talking how to hold the pencil and how to make the letters retraining. I can still write with equal skill in any direction and in any language I know. I can still write with both hands at once. I can no longer write in a different language with each hand when I do so but I definitely consider that an acceptable loss.
•I have retrained my throat to change shape when I sing but am still in the process of retraining my diaphragm to drive the breathing process when doing so. This means I no longer have the breath control and endurance to keep consistently on key or hold long notes since the abdominal exercise to keep that happening is beyond my energy levels most days and exacerbates the RLS all days.
•I do NOT have the self confidence to so much as sing in the shower or sing when I know Brad or Elsa can hear me. If you know me, you KNOW how different that is. It has nothing to do with my incredibly supportive family and everything to do with the anxiety and panic attacks I have suffered since the 2014 concussion that got exponentially worse after the one in 2019. I still sing. When Brad takes Elsa to town with him (remember he does all shopping trips and errands now since I cannot drive), I even sing loudly. I cringe and mutter about every mistake but I sing.
These are just a few things but I want people to understand that I’m not sitting there just “accepting this as my forever fate.” I know what I can and cannot currently do because I keep trying to do it! I also want people to realize I do SEE the positives and the improvements. If I didn’t see them, the depression would have won a long time ago. I have only felt borderline suicidal twice and only borderline because I focus everything I have on those positives. I won’t go there. I promise. No need to worry that I will choose to fully leave. I would not do that to the people who have had my back throughout every bit of this mess. I have yet to get fully to the point of believing their lives would improve that much if I weren’t here. They have made sure I know every piece of CURRENT me that makes their days better and it helps.