I’m doing ok getting around with a walker, and I understand better what happened to cause the need for it, but it’s all damn inconvenient.
The cancer started it.
The same place in my brain that the tumors set off swelling in last summer, got hit by the radiation on its way to killing one of the tumors. It wasn’t the focus of the radiation, it was just somewhere that got passed through. And then that same place has been hit by more swelling off and on as the tumor in question died. At some point this spring my brain decided it was time to repair and regrow and discovered that there was all this poor beat up area, and started putting in some nice scar tissue to fix it.
Boom there goes my leg from the knee down right off the map.
I haven’t seen the radiation oncologist to confirm this. This is based on talking to my own pet scientist at home (what use is being married to a scientist if you don’t make use of him?) and what the neurologist mentioned that there could be scar tissue. I see the radiation oncologist at the end of July. Between her schedule and mine that was the soonest available, and y’know it’s not like I’m going somewhere with this. If it resolves itself first great, but I’m thinking more in terms of years at this point, and that seeing her in six weeks isn’t a problem. She’s not going to pry open my head and give me a definitive yes or no for whether it’s scartissue or something else. If she’s going to look at me and say “you have encephalitis” then I’ll say that someone else should have caught that one already, but I’m not expecting that.
So I’m looking at long term changes. Sutff I’d never have thought of in with more obvious things.
I can’t get up easily from a lot of our furnature — I can’t even un recline the recliner because it takes strong pressure from both legs, and it sits deep and low.
I can’t get up easily from the computer chair — it is low (nice adjustable once, but not any more) and it rolls away when I try to stand. Oops!
Our couch and love seat have been too hard for a long time but they’re now also completely inaccessible due to the clutter in our house. Clutter is on the list to tackle for a while.
Things that just happen, like the kitchen stool got moved to the middle of the room, mean I can be trapped because I can’t negotiate the walker around them well enough to reach to move them. I feel very unsteady doing bending over things, so moving anything low on the floor is enough to just stop me when I’m tired.
I don’t even try to open or close the windows. I can’t get to them at all with the walker, and there’s uneven flooring because of the fireplace hearth around them.
I can still do things like the dishes. They’re easier if I set up the kitchen stool to sit on. A second stool to prop my right foot on, since the steps on the kitchen stool are in a bad place and my foot falls off, and then lean to the side to put things in to the drainer. If something falls to the floor it’s gone. Our kitchen was built for us, tall long armed people. Not for sitting movement impaired people.
I can iron my shirt for the day (I love cotton, except for that part). With the stool is more comfortable because I don’t feel like I’m so wobbly. And it goes a lot faster if someone else sets the iron up for me.
A lot of this would probably smooth out with some help from an OT person. I see my GP Thursday to ask her to put in the orders for both physical and occupational therapy. I need to learn how to move my foot for just things like getting dressed, because unless I get a trained monkey, shoving my foot in to my jeans every day at the moment takes orienting it with my hands, or someone else doing it. There are times the trained moneky would be more helpful than the 8 year old too, although I can’t really blame the 8 year old.
Life’s been stressful.
I’ve got to find out what is required in this state for driving a car with hand controls. I’ll start with with the GP for that too. My car appears to be worth about $3300 by the bluebook on line. What I’d like is a vaguely newer minivan with a sliding door on the drivers side so I could easily toss the walker behind that seat (I can hear the complaints now “but that’s my seat!” *sigh*) and have it right there rather than having to hold on to the car and work my way around to the hatch back or trunk. From riding with the O So Many friends who are transporting me, it’s easier to step up in to a vehicle than down. I haven’t tried getting in and out on the driver’s side of a vehicle yet. Hyundai van’s from a couple years ago don’t look bad, but I haven’t found any for sale yet. Not like I’m going to walk out and buy one tomorrow anyway.
Do I sound like I’m whining? I wrote a long “this is what’s going one” post on my blog for family, and got back a nice supportive “you’re doing well with this” and a “I’m sorry lifes so hard for you” response. I wasn’t looking for ‘life’s so hard’. I was trying to let people know what was up, nice and openly. I’m keeping lots of my big pity rounds to myself.
This week, sometime, I should get an orthotic thing that will go under my foot and up my leg and stop my toe from being able to drop. Trying to google it for a picture it isn’t coming up under the name I thought it had. It looks like “foot drop splint” is the best one (duh, makes sense). Mine is custom, with cool print on the brace itself (I didn’t see clear as an option actually, it would have made sense. I have the universe.) It will stabilize my ankle too, I hope. I hope, I hope. If not, I’ll add duct tape. :-)
