Tuesday, November 5, 2013

Hello, yeah, it's been a while

http://youtu.be/bCUyjLiUBYw

I only think of this blog when I go to use the link in a friends blog. The, OH yeah!  I'm off to a tentative start here again. I'm weeks away from my 4 year mark. I know some people celebrate their stroke anniversary. Lots of "glad to be alive" and "it could be worse" kind of mentality. To each his own, but its not me. 

I've had a pretty tough year. I gained weight, about 50 pounds..I know, holy crap! Lots of factors but no excuses. My mom passed away and the whole mess with that along with the emotional mess it brought on, was the jump off point. Chuck broke his leg, Winter, being stuck at home with chuck day after day... and 50 other things on top of it. Then there was the move from Alaska to OR in May. I hope no one else ever experiences the cluster F*&k we did in this move.


The move was to give me greater independence in the Winter. This isn't working out as planned. I sold my little, dependable Jeep when we moved. I had places to go and I knew the routes and took the least busy ways to get somewhere. Here...I have no car. I'm dependent on Chuck or now, Leighann since she's here, for rides. We're on the edge of Portland. It's busy here. It's busier than anywhere I've ever lived. I'm admittedly afraid to drive. I'm afraid I can't divide my attention in enough ways to be safe for other people. The pedestrians and bikes are very prominent here. The car drivers are responsible to watch out, moreso than the others. I'm afraid I'll injure or kill someone. Seems I've traded 6 of one, for a half dozen as far as my independence goes. I'll talk more about options later.

Maybe blogging this will help solidify my thoughts and goals. Hey, it couldn't hurt.

Monday, April 25, 2011

flotsom today, jetsam tomorrow

Spring is springing for real here in Alaska. Chances of snow are almost down to nil or at least will be in another 2 weeks. The light and warmth is improving my outlook in every area. I'm also able to get around easier and use my outside stairs for exercise on days I don't go to the rehab gym.
Yesterday, I did two insignificant, to anyone else, things that really helped lift me out of a post head-cold slump. First was getting up from the floor in the bathroom. Ok, so a dirty floor bothers me and pre-stroke would have taken me 5 minutes to clean well around the toilet. Post-stroke it's an event that required me to ass-walk to the hall carpet where I could get on my knees to get to the living room where there were appropriate height objects to help me get upright. yesterday, I used the closed toilet and my left affected leg to get up. Shut-up, it was grand... : ) then I topped off the day by closing the window crank handle with my affected hand. Yeah, yesterday rocked. I think I'll hit the rehab gym and measure my arm progress on the BTE machine. I'll caper just a bit if the numbers are better and entirely ignore them if they aren't. whada they know...

Monday, January 24, 2011

Hello again, it's me.

My strokes year anniversary came and went. I noted it silently. I'm not where I hoped or thought I would be in recovery. The Drs and therapists tell you nothing about your recovery rate except optimism. I understand this ... but ... I would have preferred more honesty. Here is what I would have told me: 'We don't know how long it will take for you to recover. Your stroke was very severe and there was a lot of damage. The good news is that we know now that as long as you continue to work at recovering your function; there is no end to what you can regain.' Yeah,maybe that would have worked for me. Straight with hope. It would have saved me disappointing myself with every goal I missed.

where I am at now. I have recently given up my foot/ankle brace. The therapists would prefer I wear it. It does make me walk better. I ditched it since I have enough foot lift to not be a danger to myself. I do have a more awkward gait without it. A hike and a swing rather than a step. Wearing the brace wasn't exercising the muscles that I need stronger to walk unaided. It felt like my foot was a lead weight at the end of a rope which I would swing forward. Without the brace, I have some sense of my ankle moving and my hip abductor working harder to get strong again. My foot feels more involved as well. I will still wear the brace If I'm going for a long outing such as the museum with a lot of walking. I expend much more energy without the brace. The fluid mechanics of walking upright is a beautiful thing. At 1.2 MPH, we reach a normal gait and conserve energy. You can't learn about stroke recovery and physical therapy without marveling at the evolution of the human body. The interconnectedness of all our muscles really is apparent when you are trying to learn to walk again.

but on with an update. I had a few bumps in the road. Had a grand mal seizure at the rehab gym in August 2010. Due to their insurance concerns, I was unable to go to the gym for a couple months until it was cleared through my neurologist. It too me a couple months to catch back up to where I'd been at. I'm fairly stable walking now, although winter ice is a whole other challenge that really messes with my independence and confidence. A few more months of winter and then it's easier outings again.
I'm still working on going up and down a curb or stairs without a rail or point of balance. It'll come. I'm hoping to be able to walk my neighborhood this summer, curbs, driveways and hills. I'd be happy with a mile on that terrain. Currently, I'm only walking 1/4 mile on the treadmill without the brace. I was walking 1 mile with the brace. Hopefully 5-6 more months will be long enough to develop the strength and stamina I need for that goal.Last summer I tried to walk about 1/4 of a mile in my neighborhood. It took me an hour and a young man asked if he could drive me home. I was moving so badly he was concerned. This summer I hoped to look merely fucked up and not critical.

I'm bored with this stroke business. I'd rather be learning something else. I go to a stroke support group once a month. Now there's some stories. One thing amuses me though. I have this line that runs through my head." The first rule of stroke club is; don't talk about stroke club." Ok, so it's just me being amused by that.

Sunday, May 2, 2010

The month of the expectation

When I was released from the hospital Dec. 29th 2009,I thought I would be well by May. I misheard, misunderstood that 6 months was a usual recovery time. Now I've heard that by 6 months or a year, Stroke survivors often have 50% of their function back. Full recovery could take years and frankly, there are no promises only cavates about recovery. When I asked about when I would get the proper sensation in my skin back on my left; I was told possibly never. My pain and temperture recptors are royally fucked up at this point. cold feels like fire as well as Chuck lightly touching that side. I can feel some things and not others. Random and chancy. I can live with it, but hey, I'd like to not have to.I thought I'd be able to go on a trip back East in May. Now I'm shooting for Oct., and that might be too optimistic also. Time is both my friend and my source of frustration.

I'm getting stronger on my feet. At rehab a couple months ago, I was asked for a short-term goal in recovery. I told them I'd like to get up, walk barefoot to the bathroom in the night or first in the morning. Normal, basic thing without the one-handed amount of time it takes getting dressed with shoes I needed for a base stability and support.Well, as goofy as it is to bring up again; I have managed to neet that goal. It's not as I envisioned it. Nothing in this stroke recovery is though, so what else could I expect. My left foot still has some drop to it, so I am a bit ungraceful and use my cane or the wall to get to the bathroom, but I get there, and I can feel the floor on the soles of my feet and the small bones shift under me as the muscles try to find my bodies balance, sending signals back and forth between brain and function; Morse code traveling new wires in my cerebral cosmos,bringing me closer to being the fluid biped my nature wants to be again

I'm exercising on the short flight of covered outdoor stairs for 20-30 minutes a day. It's a far cry from my daily pre-stroke 2-3 hour walks. I'm trying to get my hip muscles and knee stronger and less easily fatigued. I can walk step over step with a railing, fairly well. I'm working toward no railing. yikes... I'm also learning to step/walk backward on the landing with a little wall assist. A month ago, the left back step was a blank spot and now my brain is starting to 'see' the motion. bend knee ,lift foot,slow position back, toe down slowly, easy to the heel. complete step. 99,999 more of these and I should have it down pat, or so they say.:)

I'm able to get down on the floor now to do some exercising there. Mostly core and weight bearing for my arm. Getting up is still hard but I manage. Goal for getting up is pushing up on my own knee rather than the couch assist.I'll ask my PT 'bout that

My arm is coming slower than my leg. Again, nothing about recovery is as I thought it would be.The arm involves pain, so it's a bit trickier than the walking/leg. But that will improve as I get more function. It's very circular.Independence is my carrot. Chuck had to fix the flat on my Jeep as it was a violation of the condo rules to have a disabled vehicle on the premises, and maintenance left a big red notice of tow intent on it. So there it sits, waiting for me. I'm so close to being able to walk well enough, months really, till I'm fast and balanced enough to walk in the community.to the store, to the gas station, to the damn post office.

I have to fight Chuck's fears every time I move forward. His fears of me hurting myself are very hard on my confidence. Then there is the blackmail factor of telling me his blood pressure can't handle things, when I want to try something new. some things I try for the first time when he is home because my caution says its safe that way. Other things I have to try while he's at work to save us both the emotional upset he causes.I repeatedly tell him I will not allow myself to be afraid of things, like him. I've already developed fears I didn't have previous to our 11 year marriage. I'm getting myself back physically from this stroke, then I'm going to get myself back mentally from placating my husbands insecurities for so long. He means well and he loves me, but he's trapped in himself and fear of loss. I can't, I won't reside there with him. I don't have enough years left to squander them being afraid.Another lesson by example on life for my daughter.

I had no clue I knew so little about so much, for so long. Frightens me to think about how much I don't know now.

Wednesday, April 21, 2010

begin in the middle

I've forgotten much already, so I better commence to putting some of it down. It's been suggested by my therapists as a way to see my progress when I have times of feeling like I'm not making enough.So here I begin.



I had a major stroke 5 months ago at the age of 47. I like to call it a 'brain event' or brain attack', because the word 'stroke' makes me feel sorry for myself, and I hate that feeling more than I can express here.It was a clot in the right main cerebral artery. It was about 8 hours until I was found and taken to the hospital, alert and calm. I'll go more into the string of events another time.

In the span of 24 hours, I went from a fully functional adult woman, working out in the gym, to a Hematologic, dependent, vulnerable, and clueless about the damage my brain had just received. My husband was thrust into the role of caregiver, and decision maker, my 24 year old daughter yanked from her lifelong spot of having an invincible mother, into a place of fear.The world has tilted slightly and I am literally and figuratively struggling to find my balance in these new surroundings.



My current physical progress : I am using a cane at home, at rehab, to go distances to get to an electric cart for shopping. I'm starting to walk independently without the cane at home. I touch the wall or whatever for balance. It's a lack of confidence about my balance and strength on my left side, and rightly so. My arm has range of motion and all the muscles are capable of moving, but I don't use it much. My shoulder is still a bit subluxed and painful. I have developed swelling in my hand for reasons unknown. MY OT, Katie, is concerned and tells me to try to use it more. I can't wear the compression glove she gave me because of a rash it exacerbates on that hand from sweat/moisture. Hello Joseph Heller. I have found I can sit on my left hip now, on the couch. After 5 months of having to sit in one position. this is a relief. I'm hoping I'll be able to sleep on my left side in the not too distant future, as well. Still too painful at this point.



What an absolutely shitty spellchecker this blog has. :( I digress, but hey, it's my show.



cognitively, I've fared ok. I have left neglect that is and has improved. I'm the high-end mental function according to my SP. I do have a problem with tedious tasks. I'm getting better about them though, My deduction skills aren't as sharp as the were. I think I'll be back to my best again, down the road. right now my physical function has top priority for me. Oh, and I lost my singing voice. My diaphragm/breathing isn't coordinated now. I need to relearn to use the muscles.; like bellows sending the air over my vocal cords. I miss my singing. It made me feel better all my life and now when I most need it, it's been taken. boo strokes...

And that's enough for now. G'night Forrest.