I went to day to see, and do a fitting for my ‘final’ wheelchair. This has several people in a room making all sort of comments about you, your body, how thin, how bony, your limitations and the controls, the puff and suck controls are already in place to be added in. This one uses a delayed joystick so I can actually drive with my wrist which is much more stable than my hand. Then we had to figure for the tilt control which finger is the most consistent and has function, which is my left thumb.
I tried to give the chair away several times, but they wouldn’t let me, and Janet, who is leaving Q.A. to become the National Disability Swim Coach (still won’t take me just because I pass out a lot). So I told her who was getting it, since I was lucky enough to have this one funded and it will go to Scott at the B.C. Paraplegic foundation and he can figure out who to give it to. Guess that will be in a couple weeks or months depending. Doing stuff like that for three hours straight is physically and emotionally exhausting. The wheelchair is funded, however buying the new computer desk so I can actually REACH my computer or the sliding keyboard and the floating mousepad, and the optical mousepad and other stuff that needs to come with the chair including another couple hundred in grab bars is NOT funded. We are still working our way through the grinding January deductible, which is the complaint of the lucky. It means that because we have insurance, we have to pay full wack for meds until so many hundreds is spent, then they pay 80% until like $1000 or more is spent, and then after that they pick it up. Since my heart meds have now officially doubled and sort of realistically tripled same with my pain meds we are moving through the hundreds of dollars quickly.
I am snapping and having a ‘I’m a bitch’ pain day, when I couldn’t sleep much of the night due to the pain, and GOD was it bad, very, very bad and even this evening trying to nap it was bad. Turns out that wasn't my only "Bad Day" and that my caregivers had been keeping up a cheerful face. Cheryl writes about The Angry Caregiver. I recommend reading this if you take it objectively. The last thing Cheryl, Linda or even I want is for everyone to run away. That would suck. I didn't know she wrote it, I added this connection after.
At the clinic today they asked me if I was going to race this year. I said yes. They asked if I was well enough. I said no. They asked how that was going to work exactly? I said, "I guess I am going to see a lot more first aid tents." So yeah, I am JUST what you want showing up at your nice 'fun run' - the zombie wheelchair racer! I die, they bring me back!
Linda is very concerned that simply for becoming disabled herself her work will try to terminate her before she can return to work, simply as an act to try and blackmail her with the costs of insurance regarding me. While highly illegal, since they sent police to check me (and you readers) as a terrorist group, there really seems no low they won’t go to. That they will effectively force a divorce on her so I can be put in a home and then they will take her back.
So we are having a FUN time around here today, and yesterday. Anyway, that appointment is over. And afterwards I had a breakdown of sorts; just the hours of pain and the way things are always emergencies every day and these appointments (do I have one with a coffin fitting on Thursday?). I just well, cried for an hour which is a good sign….of mental breakdown. But hell, having a mental breakdown is just par for the course, isn’t it. That’s why there aren’t support groups for us, nothing about ‘moving on’ or ‘dealing with grief’ or ‘coping with the inevitable’ (titles from different ‘support groups’ for people like Linda). I do think support groups are good for Linda and she needs them.So do I.
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