So...everything came to a head last fall when I was diagnosed with idiopathic intracranial hypertension after collapsing at work, then six weeks later getting a bad case of viral meningitis.
I still haven’t been able to see a neurologist. I’ve been in the hospital about every three months after the meningitis got me hospitalized on September 14 of last year (I went to the hospital the day after that shift, I thought I was dehydrated or something, but I finished my shift anyways and my husband picked me up). It took me until late March, early April this year to get Disability Services at the University. Most of my professors were supportive but one...ugh...
I finally convinced the eye doctor I needed a neurology referral a month ago I think, but I haven’t heard anything, despite my follow up. DS said they would refer me to the rehabilitation center...but I won’t be able to get any help after the pandemic.
So I’m annoyed.
We live in married housing on campus and it’s not handicap accessible. I couldn’t get approval to move to an apartment that was, and even then no help with moving (re: pandemic)
No my husband has been very supportive, but he has had issues health issues of his own, along with both of us looking for work and us being in school.
I cannot stand putting weight on my right leg. It is very painful. I can barely lift up a large can of cream of mushroom soup, the great value kind., So I have no rehab, inaccessible apartment, and my body has not recovered at all.
i'm pretty sure I need a walker, preferably one w/seat. I have a cane, but it's not helpful when I'm trying to cook or help w/dishes, basically anything that requires the use of hands or me standing up. its not enough.
my husband is convinced that with rehabilitation and most of my strength and extremity will come back, but I am not sure. I trained as a classical and jazz musician; I was barely able to play the bass clarinet after the meningitis. They require significant workarounds and I often ended up not playing. And then after the attack on March 14...
I lost my ability to play the piano or play the bass clarinet at all. You see with a bass clarinet there is a stick attached that it kind of balances on, so between that and the neck strap it's easier to hold even with a weak right side. If you're not doing technical work or you're not playing quickly, I can still move my fingers well enough to play. Or well i could. i lost that after March 14
My point is that my husband is not a musician. He's not a cook. And so he is not aware of the physicality involved in playing &amount of deterioration.
He's talking about an exoskeleton, or being positive that rehabilitation is going to go back to before. or 80% of former capcity. But I had a serious injury to my right shoulder and neck back in Januar2014 and it still hasn't healed.
I need a walker. How do I talk to him about it? I don't want to sound pessimistic, but there isn't going to be a miracle cure