First, let me say that this is not an attack on anyone. This is sent with compassion and a need to share what others have said to me. I have read a few posts today in my in box that was sent directly to me instead of the list. Some where very poignant and made me cry. I had more than one that said that they don't post to the group because they don't want to hear or cannot handle hearing the "buck up, be happy you are so fortunate, it could be worse" type of comments. They say that hearing that type of thing from "normals" are bad enough. It rips them up to hear that on a spinal cord injury support list. Even though those thoughts and sentiments are given by well-meaning, good-hearted people, it still hurts to have your feelings negated. I say that anyone who needs to vent, you can write me any time, off list or on list. I'll listen and let you vent. We are technically going through a mourning period and grieving for the loss of our old life and what our bodies used to be able to do. Think of how you may mourn the loss of a loved one, you never really forget them or suddenly stop appreciating how they touched your life. The same things are happening with us now. We will never forget how things used to me and we will never forget how our lives used to be. One poster wrote that they have yet to meet, in person or on line, someone who said that they were so thankful to have and SCI and that their life was so much better and easier because of it. I have to agree. I have never heard anyone say such a thing. I do believe that we found some hidden strengths coming through such an ordeal. Some of us are doing better than others and some are even living a life comparable to life before their injury with jobs, family, and friends. I cannot work any longer because my body just doesn't want to work on various days for no reason at all. Even on my good days, I cannot perform for 8 hours or more. If I have to move my legs, that time is lessened. I fall on average once a month. Sometimes, I lose my balance. Other times, my legs just seem to do their own thing. During my disability hearing, they asked how often I would not be functional. I thought I was on the upper half when I said that I was only bed ridden for a couple of weeks out of the month on average. They asked my how long I have been stuck in bed and at any length of time. At that time, I had only one bad time when I was stuck in bed for two months. (I have since gotten worse.) The judge asked the opposing side how many days would negate my employ-ability. The guy said two absences a month would deem me unemployable. I was shocked because in my head, I was doing well. It sucks to know the people fighting against you for disability just said that you were unemployable. Then the judge asked if I had any balance issues or falling incidents. Again, I thought that I was on the upper half and said that on average, I only fall about once a month. The opposing side said that companies would consider me a liability if I fell once a year. Holy crap. My quest for disability so I could have medicare and some grocery money was making me feel horrible about myself. The worst part was when they asked my husband to testify. He shared how he was back down to his high school weight because I couldn't cook like I used to. He didn't have the energy after caring for me and would order fast food for us on those days or we would eat PB & J, over half the month. Go figure, my husband would be the only one who could lose weight on fast food. Then the judge asked if my condition affects our marital bed (or something delicate like that.) My husband's jaw tightened and he said that he was often afraid to touch me because of my pain or afraid that he would hurt me in some way. He then shared with the judge that he knew I would sneak pain pills to make the ordeal bearable for me. He called our romantic times an "ordeal" for me as if I had been a hostage in a bank robbery. Well, first, I had not realized he knew I snuck the pain meds. Second, he revealed to the judge just exactly how little as in frequency we had been romantic. I knew the number, but trust me when I say it sounds worse in front of a judge. Because I had not been able to work, we almost lost our house. It was supposed to be a starter house that would later be rental property. It was not in the best part of town, but it didn't matter because we were only going to be there a few years. Thank goodness we were in the starter house. We bought it because it the mortgage was equivalent to renting. We definitely would have lost the house if the mortgage was higher. The band was able to redo the loan to give us a lower payment. We also had some friends help by loaning us money.
There were months that we lived off PB&J because my meds cost so much at that time that we had nothing left for food. That was why we tried for the medicare hoping for some help. Things changed so much for us. So, yes, I do try to look on the bright side, but I really did lose a lot. Things changed greatly. I cannot work and my husband took a lower paying job so he could be home with me more because we cannot afford a nurse. We can't go on vacations because we cannot afford them. We are still lucky. We have a house, cars, and we have pets that bring a lot of love to our home, but our retirement won't be like we dreamed. I used to want to hand glide, sky dive, and scuba dive. I can do nothing now that causes any G forces so even roller coasters are out. I cannot do anything that may change the pressure to my spine or pain may set in so scuba is out and so is flying because of the pressure change. So the only travel that I can do is by car and I cannot sit comfortably for very long in there either. I was asked to share what happened to me. So here is a quick run down. I have been a para since the fall of 2003. No traumatic accident, my disk slipped and slowly crushed my spinal cord during the course of about 5 days or so. It just felt like I pulled a muscle and I thought nothing of it. Then, the pain kept increasing until I was having trouble using my legs. It started on a Tuesday night. My friend took me to a chiropractor on Friday. It seemed to help until I woke up Saturday worse than before. My husband came home from work on Saturday and took me to E.R. They gave me a prescription of muscle relaxants and pain pills. Sunday came and the ambulance had to pick me up because my legs were weak and the pain was intense. Monday, I saw a neurologist who said that he knew the problems was a slipped disk, but would confirm that with an MRI on Tuesday. He would do surgery on Wednesday and I quote the doctor here, "You will be dancing out of the hospital by Friday." Tuesday came and the MRI did show a slipped disk. Wednesday, I was taken into surgery. My husband was sitting beside my bed when I woke up and asked me how I was doing. I tried to scoot up to get comfortable to talk and realized that not only would my legs not move, I couldn't feel them. I looked down thinking that something had happened and they had to do amputations. I could see my legs and I could tell by my husband's expression that he didn't understand what was stressing me out and I blurted out the words that made everyone realize something went wrong and marked my journey into the spinal cord world. I said, "I can't feel my legs." From that point on it was like there was a fire in the hospital. My husband ran to get the first medical staff that he could find which was a nurse. She came in, talked to me a moment, touched my foot, and ran out. From that point on it was a blur. Doctors were coming in and out. My neurological surgeon was called and he came to visit claiming the surgery went fine. I can't remember the number of doctors who came in to see me. I just know that some people thought that I was faking it. One nurse called me lazy for not moving my legs. Others knew how bad it was and was trying to do everything they could think of. If I ever have a loved one in the hospital for any length of time, I plan on camping out in their room because the crap that happened to me. I was called lazy for not moving my legs. I was left alone, un tethered in a chair for 30 minutes while I had no balance or ability to sit up on my own (I gripped the arms of the chair almost falling out calling for help-none came- and then went through a bad night of pain) Those type of things always happened when I was alone with no witnesses. So I never plan to leave a loved one unattended in the hospital even if it means bringing a sleeping back and camping on the floor. Five weeks later, I left the hospital with AFOs, a wheelchair, and walker. I could only take a few steps, basically stand to transfer to a chair, bed, or car. Six months of outpatient rehab brought me to the point of only needing one AFO and a cane on my good days. Now, on my good days, I can skip the cane, but still need the AFO. On my bad days, I'm stuck in bed. That is my story. I have regained about 50 percent of my muscle use below my hips and much of that is weakened. I fall a lot even with the use of an AFO and cane. I wish that I could bargain and order my good days for special times. I have a baby shower coming up and I really hope that I can make it. I hope it is one of those days that my body is willing to work. I can deal with pain, I'll take my meds, but I really hope my legs are working. Also, Valentine's Day is coming up. I would like to be able to get my husband something nice. Nothing expensive, but a surprise gift would be great. It would be wonderful to be able to sit through a movie with him without having my back cramp up and my legs not want to work. One time after a movie, I got up and started to walk. My legs had other ideas and I ended up falling down their steps. It wasn't a hard fall and it wasn't a long tumble, but it scared me and terrified my husband. So it is things like falling down theater stairs that I didn't have to deal with before my SCI that I now do. Things are so different and I do miss the old me. She was fun. Now, I get called inspiring. I think that I would rather be fun, again.
