Over a year ago, my body began to experience edema, which despite being elevated, continued and increased. I tried medication to reduce the edema at the turn of the year but instead of getting better, the edema got worse.
But what bothered me the most was: Jeans.
Actually what bothered me the most was I lose life, then dignity, then all choices, even down to my cells, my body is taken away from me.
Edema meant that whether I was overweight or not, I could no longer wear jeans.
I found that if I exercised every 10 days for 2-3 hours, then the Edema would recede and then come back. So I exercised. Every week, in the summer, in the worst weeks, I always exercised.
Now, after not eating many meals a week for so many weeks, I am now sitting on my pelvic bones. I am essentially in my anorexic state, except I have this torso edema, and leg edema.
I really, really wanted to wear jeans, just put them on and be cool again – not PJ’s, not sweats, but JEANS.
So I worked, and exercised, often every 5 days, week after week, month after month. And my lower legs were cleared of the edema.
What I have is cellular and brain edema, which is the collapsing of the cells and the fluid expanding. It, like the enlargement of my organs, which is what shoves out those organs as a ‘pot’ is part of the final stages of a terminal disease. My heart, to which I will get an echo of in a few weeks, is likely spending 20+ years each year to keep me alive.
The GP, who deals primarily with terminal cases said that no, there was no hope for the edema. He added that ANYWAY, ‘once the edema breaks and stretches the muscles, it is pointless, the entire body of muscles would need to be rebuilt entirely…’
To someone else that might be disappointing, to me it was encouraging. The doctor essentially said that if I can rebuilt each muscle from scratch…then the edema in the legs would reduce enough to wear jeans.
So, that was the plan, to rebuild the legs entirely, the gluts and my ass, from scratch. And week by week, month by month, it is what I did. I needed to be up, to rebuild the parts of my legs that I can’t feel but which seem to work somehow. I talked to some SCI individuals and found others who had no feeling but could use a leg or muscles. “As long as I don’t think about it, it seems to work.” One said about walking a short distance.
I trained, and eventually I did the Terry Fox. The next day, I tried on jeans. I could get them up to the thighs but that was it. Too much edema.
So I kept working and every month or two, I would try on the jeans, and eventually I could get them all the way up, and button them, but they weren’t comfortable. I took them off and went back to exercising. Up at the YMCA, I go to the training machines and do my sit ups and push ups out in public. I needed the exercise bikes and the treadmills. I could do a half an hour on the bike, where they strap my feet to the pedals and I have a back and arm rests. The treadmill was harder. I had to walk at a steady pace, or the clip for the emergency stop yanks out and the treadmill comes to a dead stop. I was trying to balance, and the first weeks I was hunched over grabbing to the arm rests.
The last three weeks, I have been working on having my body up as much as possible with my arms swinging and the pace steady. But like the picture here, I often have to keep an arm on the treadmill to stop from falling over, or falling off the back. I only exercise AFTER I am sweating, by doing the 160 sit ups and 140-160 push ups as a ‘warm up’.
I exercised on Monday. I went out on Tuesday. On Tuesday I wore jeans, they felt good.
You asked for the ears and the pictures I took didn’t show the jeans so here is another picture of me, with the jeans and hoodie with ears. The walker is in the front of the picture.
When I say that I keep going, that I have focus, this is what I mean. I wanted to wear jeans. I wanted to not have edema. I can’t stop my body dying, or the cellular edema, but thanks to those who came with me to the gym, I am wearing jeans again. They are the same jeans I wore when I first had to use the wheelchair. The jeans I got for going to the epee fencing competitions. Foxy jeans!
And maybe 60 or 70 weeks of pain, and hurting so bad I can’t sleep, is a stupid thing to do in order to wear jeans. All the sweat, and the tears. But I’m using a treadmill, and though I might be unconscious for a day after a date, I’m still fighting, in the ways I can, to have the best quality and be pulchritudinous too. I want to dazzle, to radiate with a smile, to live a life where I get choices, and it isn’t just wearing sweats.
Yes, I spent over a year so that I could say ‘It isn’t impossible until I say it is impossible.” I’m dying, it hurts all the time, and nothing seems to be getting better, nothing improves, nothing to be happy about. But this, this I can do.
Don’t you get it: I WON!
14 hours ago