...boy is it a real slap in the face.
I got four packets in the mail from the people in Jackson who review cases for Social Security. Back in 2008, they took one look at my medical records, and approved me. The entire process took approximately three weeks.
Last summer, I got a packet in the mail while I was in the hospital that said my case was up for review. After all, I was approved because the cancer I had was supposed to kill me, and well, I'm still alive. So I sent in the required documentation and releases and statements and such. Never heard from them again, so I assumed all was well. You know what they say about assuming...
So the packets were already past due when I got them (due to us being out of town and then kinda forgetting to check our mail for...a week...so I called the lady referenced in them and explained that I was just getting to it. She was perfectly fine with it and documented that I had called. That was Monday. All day yesterday I was gone to Jackson with my teens' high school band for a band concert festival. I had to go so I could bring my son, his girlfriend, and a fellow soccer player who is also a band member back with me so we could all go to my son's soccer awards banquet last night. I was unable to drive because I was so sick, so the band director very graciously allowed Jared to drive me, behind the bus and equipment truck, up instead of him riding the bus. I had a seizure on the way, pretty sure, because of the way I acted afterwards...slurred speech, memory lapse, sore muscles, etc. Then we rush home (almost three hour drive), get ready for the banquet in 15 minutes, and go to that. By the time I got home, I was crushed from exhaustion. I spent all day recuperating and put off making the soup I'd promised the family because I was just too sore and too sick to even get out of bed until this afternoon. Typing this is physically draining...but I have a goal and I must at least try.
I sit down this afternoon and drag all four packets out to look at. Thankfully, one is for Justin and I don't have to worry about it (he has to state his observations, how HIS life has changed due to my illnesses, etc). The other three were very extensive. Sometimes I had to repeat things. One was simply a questionaire of my last ten jobs, what the duties entailed, salary, hours worked, etc. Boy, that was fun for a fibro patient to handle. One thing we deal with is fuzzy memory. I wrote "I don't remember" on several of them. The other two were much more in-depth. I had to list what a typical day's activities were for instance...had to answer personal care questions...sleep quality questions...list symptoms and ailments...state how my life has been changed, etc.
I decided to do it pretty much the way I see things since the second bout of cancer...I define life as "pre-2006" and "post-2006." 2006 was the year my world literally fell apart...and because it was literally overnight, I still haven't adjusted well. I listed things I could no longer do...and the more I wrote, the longer and more pathetic the list became. I listed the adjustments I've made to try to maintain a semblance of normality in my life in the past six years. Again, the more I wrote, the more pathetic it seemed. Finally I got tired of writing, and my hand was a solid knot, so I just summed it up the best I could, as honestly as I could.
The result was really startling when I read over it later. When its all laid out in nice, orderly detail on sheets of paper, it really is like a slap in the face. I haven't realized just how bad things have become. I can still get out of bed most days. I can still cook a few times a week. I can still dress myself (except for lace-up shoes...I have to have assistance there). I can still brush my hair and my teeth. I can still care for my cats, especially now that I have a Cat Genie and no longer have to force the kids to do the litter box. I can still attend some of my children's functions and spend time with them. I have a lot to live for.
Then I look at the things I can NOT do anymore...and I cry. Often. I drive very little now because I never know when I'm going to get sick or have a seizure. I stay cooped up inside the house most of the time. I haven't attended church in well over a year because sitting in the Sunday School chairs and in the Sanctuary pews cause so much pain for me that I literally can not sit still to finish the service, then I suffer for a couple days afterwards with muscle pain and cramps. Its an excuse, and I realize this, but its also my reality. I've let it interfere with my church attendance. I can't shop unless I get a scooter or force a family-member to push me in a wheelchair. If I do try to walk around a store, such as Wal-Mart, I have to stop frequently to rest, and thank the store management for providing benches throughout the store. When I travel in a car for a couple hours, my feet and legs swell so much its painful. I don't sleep much at all because of various nightmares, fears, bouts of nausea and vomiting, regular migraines, and general aches and pains from the nerve damage and from the Fibromyalgia.
I could go on. I could keep listing things I can't do anymore, things that affect me negatively now, and you'll be left thinking I'm a superior hypochondriac. Trust me, I don't complain about *everything* that bothers me. I gave up even trying years ago because I couldn't stand whining and moaning every time I opened my mouth. I still do it...but I could do it even more, and that bothers me. It comes to a point that I throw my hands in the air and just shut up, go find a nice dark corner somewhere, and cry for a while.
I want to go back to work. I thrived when I worked. I loved being out of the house, meeting people, socializing. Now I cringe when I think about going even to a family dinner, because the thought of socializing scares the crap out of me. Crowds make me have trouble breathing, even small family crowds. I feel helpless, unable to lift anything, no one wanting to let me help with anything because I look so frail and sick, or they've been told by my immediate family members about things that have happened to me during the week. So I stay home on holidays and avoid gatherings altogether. As far as getting out of the house to work, no employer in their right mind would hire a person who can't stand more than a few minutes at a time, who can't SIT more than a few minutes at a time in a regular seat, who could collapse unconscious with no warning at all. There's also the problem of transportation to and from work...there is no public transit system out here...its the country. I can't expect people to take time out of their day to drive me a half hour or more one way to drop me off, then come back several hours later to pick me back up.
I don't like this "me." I want to be better. I want to run again. I want to walk again without pain. I want to play with my daughter and enjoy my teenagers. I want to go back to work. I want so many things. People constantly tell me "It could be worse, you could be dead." I want to slap them when they say that. I look at people who have it so much worse than I do, yet have a better outlook on life, and I'm envious. Why can't I be that positive? Why can't I look forward to the future the way they do?
Once, I was a strong, confident, self-assured young woman who let nothing stop me from doing what I wanted to do. People said I couldn't be a helicopter mechanic because I didn't even weigh 100 pounds. I did it anyway. People said I couldn't shoot well because I was a girl. I did it anyway. People said I couldn't do so many things, and it just fueled my ambition to do it anyway. Now, people tell me I can still do anything I want because I'm *alive*...and I want to cry and shake my head in frustration because no matter how hard I try to do something, I end up paying for it for days afterward. I know there's a reason I'm still here. I know there's still life worth living and memories worth making. I know all these things in my head, but they don't comfort me much in the dead of the night when I'm struggling to get some rest.
So, we'll see how this turns out. Hopefully they won't cancel my social security. That would seriously throw my family into financial turmoil. The trip to Disney was an extravagance we haven't had in seven years, and as much as I enjoyed my children on that trip, I keep thinking now it was a mistake and maybe I should have went ahead and used the money to pay off a bill or two. The reality is, my children will be gone and out of the house in a couple years...and I'll still have bills anyway...so I chose to make some memories with my family while we had the opportunity to do so.
This is going nowhere. This whole post sounds like a poor, pitiful me type post. I suppose I'm in a funk because I had to sit and write everything out for the Social Security review today, and anytime I try to list all the various things that are wrong with me, and the way my life has been impacted, I get depressed and feel like a whiny cry-baby. So. I suppose I should try to go get on the elliptical and see if I can make it a full two minutes this time...baby steps, right?