A particularly poor night left me weak and on oxygen this morning as we went to see the internal specialist (which we had waited some months to see, done 16 tests and were now discussing). My B12 was significantly low but neither the specialist nor I thought it was a primary cause of any current problems except perhaps energy. Something is causing it as a secondary effect but he did not know what. And indeed, his inch of medicine was exhausted, as he didn’t know what was causing my symptoms and didn’t want to see me again, referring me to an endocrinologist and neurologist. At one point he said that there was no way to find out what was wrong with me (Did he mean that HE couldn’t or no one could?). I reviewed what I saw the rate of progressive weakness. Did he agree. Yes, but could offer no diagnosis. Could he give me some idea of how much time I had to get a diagnosis? (I told him I looked ahead 4-6 months and wanted to know if I would be too weak to be anywhere but at home cared for in a hospital bed) Basically, how long do I have; months or years if they don’t find a diagnosis? He shrugged and said, “No way I could say without a diagnosis.” And that was that.
So, once I return to my GP and get the second referral, I will be on new waiting lists (likely many more months). The Monty Python aspects were starting to get to me. Would Linda finally get a call sometime 2008; “Elizabeth has her specialist appointment next month, first Tuesday at 8:05 am” only for her to reply; “Fine, I’ll need to get a shovel to dig her up.” But for now it is just a personal reflection on another few months and few days wasted, another dead end. The specialist’s parting comments allows me to make a generous offer; Come up with a spiffy name for what I have and if I die BEFORE they diagnosis, maybe they will put it on the death certificate and you can have named a brand new disease. Send your entries with a $5 processing fee to: Beth’s Medicinal Marijuana Fund. Victoria, BC.
Going home on the bus, I needed to transfer. I was too weak to push myself up a hill I usually do and would have to pay $2.25 in bus fare to be carried four blocks to the top. But what else was there to do. The bus stopped for me and another wheelchair was already onboard. A woman sitting in the flip up seats where wheelchairs are secured was asked to move back one row. This displeased her greatly, her being forced to move for what she said to my face was “just another of those damn wheelchairs; they are simply a nuisance.” This was stated about 1 foot or less from my face, but I didn’t take it personally, since it was spoken in the same way one would talk about those damn Negros or those damn Jews. I took it very personally. As I was incapable of locking myself in, the driver did it for me, allowing her to continue her rant to the back of my head how, “those damn wheelchairs only go a few blocks anyway.....” She continued but I was distracted by having someone peg me so accurately; that my weakness to be unable to wheel up a single hill was such an inconvenience to her (and it seemed by implication, everyone). I was a THING, something to shouted at, something whose $2.25 was not worth the effort. Certainly not a person.
I left the bus blowing the woman a kiss, which is preferable to letting her see me cry, something I did in the privacy of my apartment where I wished upon her the worst thing I could think of; this illness, my illness, which eats away choice, dignity, hope, life and body. Bon appetite!
5 hours ago