Saturday, March 22, 2014

My Uphill Battle

I believe this whole ordeal I found myself in, 8 years ago, after going through hell, and finally accepting the fact that I needed reconstructive foot and ankle surgeries, (which sealed the deal for this ridiculous RSD), was all for a reason. A few reasons really. Maybe I'll keep finding those reasons or maybe I'm just making this all up in my head? I don't know but even if I am just making them up, I guess it's my way of "coping"? This pain keeps getting worse, and lasts longer, and the things that gave some relief before, don't do much at this point. (No wonder this is called the suicide disease!! NO, I don't plan on ever doing that! But I can understand why somebody would find themselves in that situation, sadly.)
The days in a week that I can walk without hanging on for dear life are getting smaller, the hours in a day that I have to get things done and be without pain, or can even move, are getting shorter. 1 good thing is, it seems to have stopped spreading for now!! Maybe it will stay in my hips, down? I'm not sure..... But, I have days that are a little better then the last and sometimes, if I start to get upset, I end up thinking and realizing that this seems to be some sort of blessing in disguise. (no, this won't kill me, so I don't sit and dwell and mope very often, actually, that's rare. There is ALWAYS somebody worse off)
When I turned 14, (legal working age), on my 14th birthday, I ran to school to get my working papers, and found a job that same day. From that point on, I worked nonstop, sometimes 2 and even 3 jobs at a time. I am a major workaholic, working for everybody and anybody, rarely taking off, for years I'd leave 1 job and have an hour before I had to start the next job.
 I broke my ankles, my feet, sprained ankles, and I'd beg and plead with the doctors to please just let me have a walking cast, I promised to take care of it and stay off my feet, then I'd leave and go back to work.....never allowing for anything to heal properly. I canceled doctor appointments and figured if it doesn't hurt that bad, I'm fine, and invincible........until that started catching up with me. and even then, before we moved, it started to get progressively worse and I couldn't move or lift my feet off the ground all the time and the pain was starting to become unbearable, but, I kept working and tried to ignore it. I always figured nothing can stop me, and nothing will knock me down, so I kept doing it.
 I had to start taking nights off of work at the bar, and tried to cut a day out of my 7 day work week, then another, and another.....then, I finally found a job closer to our new town, and I worked like crazy there, but less then any other job I ever had. That went downhill pretty fast. Almost immediately after working there, it was almost impossible to lift my left foot off the ground, so I just started dragging and limping, causing my other foot to get worse.
So, I gave in and went to the doctor and got more xrays and they were all shocked I was even walking at, surgeries were my only option. We couldn't find a surgeon who would do 2 reconstructive foot and ankle surgeries, we went through 6 of them, and they all shook their heads, or said, "I won't be able to help you. I don't know if there is anything I can do other then amputate, this mess" and I thought this was absurd! Surgeons can do organ transplants, give people a whole new face, how the hell are they going to say they can't fix a few issues with feet and ankles?? (well, lol, I guess it was more like 100 issues) So, I just kept jumping from surgeon to surgeon until I found one who swore she could do it, 1 at a time. The left would be in 2 surgeries, the right in 1. Ok, no big deal....well, it all went downhill rapidly.
Then, 1 day, while I was at work, I couldn't move. (Luckily there were a few friends there at the time, 1 also being a bartender/coworker), and I had to sit in the back, while she helped through my shift. I just couldn't do it. I made an appointment to get more xrays and they pushed my surgery date up since there was even more damage done, and I even tried to put that off. Just the thought of having to be on crutches and in a wheelchair made me mad, but I still went in, expecting to be back to work in 6 weeks.... and then it all went downhill, again. She screwed up my surgery, after a few more months, she said she wouldn't be able to finish it, nor would she do the other, and nobody else would even think about trying, so I was stuck. I called and called, asking for help, and a note to get back to work...nobody would help, again.
 My family doctor called and said I'm going to have to go to pain management, since everything was getting so much worse and all of these new, crazy symptoms were starting, that made absolutely no sense whatsoever......and so, I went, reluctantly, but figured they would say, "no worries! You'll be fine in a couple weeks!" But, they didn't.
 I'm not going to go into even more detail about this point started out as being why I think this happened to me. For one, I know this happened, to slow me down and spend more time with my family, for that, I am grateful for this disease.
 The 1 thing that has bothered me most of all when I get into these nutty moods, is that all my life, I didn't really have the greatest self esteem. I wasn't ever the type to dwell on this and think about it much, but it's the way it is. The problem is, I always prided myself on my work ethic, and skills getting a lot done, always moving, running, being the most efficient and fastest bartender ever, and having cool hair and I was able to wear a skirt without having to hide my damn legs. So, I was content.
 But this wicked RSD started in my feet and ankles, and almost immediately attacked my legs, now, its the whole bottom half of my body. I have to hide all the time, I can't wear skirts, unless I'm wearing leggings underneath, my ankles are swollen, discolored, I can't wear shoes, I have scars everywhere, after working, they turn black, even in summer I can't stand the welts, scars, purple, blue, black, scabs from being ripped open because they itch so bad 24/7, I can't shave my legs half the time, razors feel like they are pulling my flesh off, it's a mess.
But, still, I can deal with it. It just sucks. It's taken everything I had going for myself It's taken everything away, and it's only getting worse. (I only recently accepted that fact, because I firmly believe that a persons attitude and thoughts, have a huge impact on their health), But, even the best most positive attitude doesn't always help, that was another belief down the tubes. Which leads me to believe, on top of slowing me down and making it that I have more time to sit back and enjoy life and my children, this disease, in it's own psychotic way, is forcing me to find something else to be happy about with, I'll be working on that, I guess ugh. But, maybe I'm being punished? Maybe when I find all these answers, (I've long since accepted and became part of the agonizing pain, even though it doesn't alleviate even half of it, but it has helped me deal as best I can), maybe I get the gift of remission????????

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