damn... i was just in the middle of writing one of my lighthearted, funny things about stroke recovery posts and i got a message telling me that my closest friend, the only one that didnt pull back at all since the stroke, the only one i really still do things with much, the only one willing to lug the chair in her car, the only one who still treats me 100% the same as before except for the mobility issues, has lung and bone marrow cancer and less than 6 months to live - obviopusly im not up to
lots of good changes on the teal in the pool front:
1) the creepy guy in my class finally quit, so i feel better about being there
2) i now can not only get in and out completely on my own, without either their wheelchair or walker;but i can manage to walk in only calf deep water from the bottom of the ramp to the edge
3) after class my leg is too tired to walk in the shallower water;but if i sit and scootch to the edge on the side where the ramp is, i can actually pull myself to
well, its been three years today, and i'm still around and living on my own, despite dr's predictions - what do they know ? for those of you who thought i disappeared, nope, i'm still here not been doing much, isolating a lot for some reason - still going to the pool, though, can now get in and out by myself without using their chairs - i'm determined to be as independent as possible - a friend accused me of refusing to ask for help, i told her that i don't have a problem asking for help... i
ok, this probably is going to be a different tone than my usual entries, apologies in advance....
i've mentioned my pool t before, and that i have ptsd... well, theres this guy in the class (with arthritis, not stroke) that always stands too close, especially when behind me, pushes every one of my ptsd triggers;but i've been trying to tell myself that its just an old reaction, he wasn't going to hurt me, i was an adult now, etc, yada yada yada... people tried to tell me i was overreacting t
a change from my usual blog entry - a jump to present time, ok, its still the past;but only 2 days instead of 2 years
tuesday i had an appointment with my primary care physician and i once again wondered why so many supposedly educated people with theoretically normal brains are so clueless.... first its a medical clinic, associated with a hospital with a highly respected ground-breaking rehab unit, so why do they have doors that are impossible to open while trying to propel a wheelchair ?
just a quick one to tell people i'm awakening from hibernation and haven't disappeared completely hope you're all doing well, or at least better than when last we spoke - talk to you all soon
always,
teal
i've never had any experience with the fire department in my life, till i was post stroke, my count is now up to three.....
the first time, i was at one of my pt evaluations, id scheduled paratransit foe later than i needed to go back home, so decided to wheel to the supermarket a block over and pick up a few things.... well, it sounded like a good idea... until i was on my way around to the store entrance on the sidewalk, someone had moved a trash container onto the sidewalk;but it looked
a couple months after my surgery i pestered the rehab dr to get me back into pt and into pool t.... so he sent in the referrals and i waited... i got a call from the outpatient therapy referral center a few weeks later, they were really backed up, was it ok for them to refer me to a different hospitals therapy program, i figured id waited long enough so said sure... the other hospital called me the following week and had me come in for an evaluation - it went pretty well, she said she thought i
i love figuring out how to do things that able-bodied people think i cant, or better yet, that they cant - my favorite example of that was my furnace - it wasn't lit when i first moved in, in mid january, the repairman did it 5 days later - and it took him a few times and over an hour to get it.... it stayed lit till april when my sister was here visiting, she went out and got a special lighter for it;but still had trouble getting it lit - last fall, my friend lit it for me once, and i asked her
life continued, as did adjustments - ot decided i didn't need them because i used my hand a lot, even though i was still fighting what i call "the brain damage wobble" and was unable to do much fine motor activities, the lack of sensation and proprioception still bothered me;but they seemed to think there was nothing i could do about that... pt was on ho;d waiting for a new afo, pool t waiting for the "rash" to clear, i was all moved in; but still not unpacked - had figured out how do deal with
it was weir being in my own place and alone, without the hotel help there in case i fell..., it still felt unsettled, though, workmen were still in and out, the bathroom bars had been put up;but id discovered that there wasn't room to position the chair properly for transfer to the toilet, so i needed to have the sink/counter/cabinets removed and replaced with something smaller - luckily i had the bedside commode i could use in the meantime and that i was able to empty it myself - the thermostat
my friends found my mobile home for me, i was in the hospital with nowhere to live when i got out - they found an agent (a bad choice of one;but oh well....) he showed them three, and they picked the one they thought would work best, since i never saw the others, i've no idea if they made the right choice or not - the realtor was one of those tell them what they want to hear not the truth kind of guys - i had told him that my main requirement was that i needed to be able to move in, with the mo
the month at the hotel continued - i became expert at getting phone calls from a panicked coumadin clinic, it seems that my eating habits, including how much vit k i got, was a lot different than when i was in the hospital, id left being on 6mgs a day;but after my first test since discharge i got a call "DON'T take any coumadin tonight or tomorrow, then come get tested again!!! AND DON'T FALL !!!" lol, oh darn, just what id planned till she said not to.... id been on a stable dose for weeks;but
ok, this entry will take some backtracking, and forward jumping, from the time frame of my other entries.... back to the first week i was in rehab, first week of november, 2003 - id noticed that my roommate always had a long list of things to ask/discuss with the drs when they came around each morning, i on the other hand, being of the don't complain, deal with it myself, as long as i'm breathing and not bleeding to death ill say "i'm ok" type, always just said i was "fine" - well, one morning
during that first month, while staying at the hotel, i also was dealing with trying to get a power chair, finalizing the purchase of my mobile home and the modifications on it and moving in, getting paratransit arranged and attending my first outpatient medical and therapy appointments... all on zero food and zero sleep (will get to the why of no sleep in next post, promise...) i had been surprised when i was discharged and saw how many appoints they'd made for me: primary care physician, physi
i think the most important thing i've learned since my stroke is that you have to be inventive to figure out how to do things.... like jean's rope on the doorknob trick (i figured that out when i moved into my own place, i used a leash for a cat or dog looped around the knob) - the first time i fell at the hotel was one of those need to figure this out things, i was upset that id fallen and needed to be helped up;but at the same time i was so pleased with myself for figuring out how to get out o
the poor place is probably still regretting having me stay there, i pointed out all the things wrong with their "accessible" room - obviously they couldn't fix the too thick carpet, the bathroom being too narrow for the transfer bench, toilet bars on the wrong side, kitchen too narrow, etc;but i had them moving furniture, etc before id agree to stay - they took out the bedside tables, moved the floor lamp from the middle of the room to the corner bbehindthe bed, moved the bed as far toward the w
here i was - free from the hospital for the first time since the stroke and off to the hotel that was to be my home for the next 4-6 weeks.... i was a little nervous despite my assurances to everyone that id be fine on my own - totally on my own for the first time and after three months of dr's nurses. aids and therapists following my every move and helping at every turn, sure, id be great..... gulp - id done my research before booking the hotel, since i had my laptop in the hospital, id looked
the day of discharge finally dawned - 76 days after my stroke, i was finally being discharged... therapies that day were pretty much as usual, lots of safety reminders, my favorite being "don't fall" gee, id been planning on trying that as soon as i was alone..... i also got visited one last time by each member of my team - pt's contribution was the walker with "don't use for walking" warnings all over it, ot reminded me to return the wheelchair when the one being ordered for me arrived and to a
before they'd let me go they wanted to make sure i could do some minor things, in my opinion they left out checking me on some of the major ones;but oh well, i've managed... pt got me ready bbyputting bright yellow tape on my walker saying not to use it for walking... ot took me down to the kitchen and wanted me to make a ssandwichfor myself, no problem, lol, opening the fridge i managed and i grabbed a jar of jelly, got it and the bread to the table, opened the jar, got a knife from the drawer
things got odder at night in rehab... the bathroom obsession seemed to be amplified somehow, like the nurse who'd come in all cheerful asking "does anyone want a suppository tonight?" i mean let's get serious, would anyone ever answer yes to that ? i can see "willing to have" or "need" but "want" ? get real..... then theres the late shift staff, the ones we don't really know because they come on when we're asleep and leave before morning vitals, so if you see them at all its when yyou'rehalf awa
all in all, rehab was going well, pt was the slowest part, due to my bad knees, it was going much slower than id hoped, that and still not being able to feel the floor under my left foot... both my roommates were able to use canes when they left, while i was (and am) still in a chair - the real problem was that whereas my knees had hurt when overused prior to the stroke and id just ignore it, or pop aleve, now instead of hurting, my left one felt like it was going to buckle, not a good feeling w
one thing i got really tired of hearing was "you did that better than we expected" or worse "we didn't thing you'd be able to do that", i mean it was great that i was doing well and that they were encouraging;but every time i heard it, it just reminded me that they weren't expecting much - one day they took me outside to see if i could get the manual chair up the hill from the parking lot, i made it half way and held onto a sign pole to rest and they said they hadn't expected me to get that far,
there were a few special events in rehab - there were the night time activities i never seemed to have the energy to participate in... there was "furry friends" where they bought animals in, cooking night which was similar to our saturday cooking groups, art night, for a few days after wed often catch sight of the migrating glitter.... and there were occasional outings where they'd take small groups to dinner or movies, one night they took my roommate and i and the way too young for a stroke guy
it may have been a coincidence;but it seemed like whenever the ots weren't sure what to do with me, they'd get me to do their (or someone else's) work for them.... there was the time they were having a lunchtime birthday party for one of the therapists, so for therapy they had me set the table for them, another time i spent the session using alcohol wipes to clean a whiteboard someone had written on with the wrong kind of marker... and then, knowing i was a computer addict they had me try to typ
