Thursday, November 03, 2011

How I learned to wear jeans.

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!


Baba Yaga said...

Yes, you won. Congratulations!

It's a crazy victory, but the crazy ones tend to be the ones which count. Crazy victory = goal chosen by *you*.

Blessings on those who go to the gym with you. Now, if only we could find a way to get you fed, too, that'd be excellent. (The internet's a wonderful thing. But I can't upload grub and ensure you have the means to get it into your body.)

Kate J said...

Fantastic. Something that most people can take for granted, wearing jeans, so it's somewhat chastening to realise just how important it can be, not just the jeans themselves but to have the choice of what to wear, to be able to take back some control of your body... and of yourself. And how very hard that struggle has been. I bet you used to take jeans for granted - as I guess everyone under the age of about 70 does (oops, Geoff is 73 and just about always wears jeans) I tell you I'll never take it for granted again.

And you look fabulous in your jeans-wearing photo!

Love & peace

Anonymous said...

an awesome victory hun.. well done!!

Elizabeth McClung said...

In a life where loss is the constant, it takes focus, dedication and a hope beyond what is said or read so that somthing positive can happen, not by accident but by design. If it didn't work, I would have spent the year and tada, that would have been it. Right now, risks are all I have to spend, I ran out of reserves long ago.

Baba Yaga: Yes, I got picked up I think because I did not looked 'disabled', I had on eyeliner, mascara, jeans, cleavage and a cool name brand hoodie - I hated losing being femme, and I was able to reclaim that, even for a night, from this disease.

I'm doing better on food, but I've wondered and hoped for an IV some weeks.

Kate J: I don't know anyone who wears jeans in wheelchairs, when I was fitted for the first one, I was told I would never wear skirts - so I did. It is because it is hard to be dressed and undressed with them (but since I have no assistance in that, as I have previously blogged, I guess that worked out too).

Over a year!

Linda McClung said...

You looked hot in those jeans. And the hoodie makes you look so cute!

I am very impressed by how hard you work to achieve your goals. I will try to be more supportive and worry less.

cheryl g said...

Hooray you won!

Your determination when you set yourself to do something is amazing. You look wonderful in the jeans and hoody.

Never give up, never surrender!

Displaced said...

Your determination and resolve is really amazing. What are you tackling next? (I figured I would warn it to be prepared! LOL)

Good onya mate!

wendryn said...

Wow - a lot of work, but you did it! Congratulations!

SharonMV said...

Congrats Beth! You have courage & determination, this we know, but you also figure out how to reach your goal. Your intelligence is still at work, even parts of the brain don't function as before.. And it's a great goal. You look fabulous.


Neil said...

Lovely Beth, in fabulous jeans and hoodie-ears! Yes, you're crazy, but we need more people who are crazy the way you are. after all, you're still redefining "impossible," medically speaking, at least.

But if loss is constant, why are Weight Watchers, SlimFast, and the like so successful?

Love and zen hugs!

Raccoon said...

I've heard that people do strange things for vanity.…

Other than that, how was the play, Mrs. Lincoln?

I'm glad you were able to find some movies at the library. Did you get Linda to bring them back for you? And congratulations on Date Night!

Yeah, I'm a couple of days behind…