Effectively Coping with Disabilities and Raising Awareness

Rudy Sims

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Related Topics: Disability Nexus

Disability Nexus: Article

How 1/10th of a Second CAN Change Your Whole Life! (my story) - Part 4

An article written by Dave Breezy (A.K.A. Chairdozer)

They also began "classes" to teach me what I needed to know about being a paraplegic. "What’s to know? I thought. That my legs don’t work? Not like I’ll forget that any time soon!" Boy, was I wrong. There is some stuff that you really do need to know! Now, here comes the problem. They would get me up about 8:00 am. For breakfast, then get me washed up & dressed for therapy. Therapy ran from approx. 9:30 am. To 11:30 am. Or thereabout. Therapy was physically demanding, and quite painful at times. Then would be lunch. Then after lunch we would do the mental testing till 3:00 pm. Or so. Then , when I was exhausted, Then we would have these "classes" that consisted of watching videos on the computer. I thought "Now you’re going to teach me to sit in a chair?!" Can you spell "Snooze?" I did just that. Wrong move!

Meanwhile, my family, friends, my employer, and several churches helped with the necessary modifications to my home. As my home was built in 1895 and wasn’t even close to wheelchair accessible. They took up collections, donated time, money, and materials to build ramps, a shower stall, widen doorways, ect. I can not name them all, for there were far too many. But I owe them a huge debt of gratitude, that I can never hope to repay. God bless them all!

As the time for me to be released grew close, they began to try to line up all the equipment I would need. A "special" hospital bed (to help prevent pressure sores), a Hoyer lift (as I could not transfer to & from my wheelchair), a shower chair, and a wheelchair. Finally! My own power wheelchair! No more waiting for someone to push me around! No more "loaner" chair! They showed me a few different options, and we went through what "they thought" would be best for me. I had no knowledge as to what was even available. Now they want me to decide? Finally, reluctantly , I reached a decision. I had reservations, but ok. Got it planned out, right down to the color I wanted. Great right? Not so fast!

Approx. 2 weeks before I was to be released to go home, they told us there was a problem getting my wheelchair. They were on backorder. It would be 6-8 weeks before I could get one. I might have to go home in a manual chair. There was one other option. The hospital had one demo. If I wanted, The company that dealt them would take it in, go through it, fit it with my seating system, and let me take it instead of a new one. It would have the same warrantee as a new one. The only thing is I would have to take it the color it was. Luckily it was blue. They said I should have it in about a week.

A week went by, no chair. I was impatient to say the least. I was told they hadn’t taken my chair in to start on it. The reason I was given was "another patient is using it and we don’t want to take away his mobility". I blew up! "What about MY mobility?" I was PISSED! That day they came and picked up my chair!

I received my chair on Monday. I was scheduled to go home on Wednesday. Next problem. My bed and Hoyer lift were in Georgia, where they build them. Unfortunately, they were in the middle of a hurricane, which delayed them shipping them out. I stayed in the hospital till the following Friday so they could be installed.

I was released on September 17, 2004. I came home to a big welcome home party. They had asked me what I wanted most when I got home. I said to have a cookout. With maybe some steaks and brats on the grill. And to have all my family together like we used to do. They had a welcome home sign painted on a full sheet of plywood in the front yard with my family all around it. When the bus pulled up to let me out and I caught sight of it, tears welled up in my eyes. I was HOME! It was such a beautiful sight, and one at times I thought I’d never live to see. They had the grill ready to light, and the steaks thawed. After we ate we all sat on the porch and visited while the grandkids played in the yard. It was a beautiful sunset and warm, peaceful evening. Funny how you miss the little things most.

I unfortunately had to go back in a month later, on October 16, 2004 due to a pressure sore I had when I left the hospital. I am partially at fault though, for not paying attention in the "classes". That was the purpose of them. To teach me how to avoid them, and what to do about them.

I was in the hospital about 5 weeks that time. They did 4 surgeries to remove necrotic (dead) tissue. They cut clear down to my tail bone and in fact, took part of it out. They also did a colostomy on me at that time to divert stool away from the wound. They would do surgery, say it looked good. Then they would put a "wound vac" on it. Change it three days a week, Monday, Wednesday, & Friday. It would do fine. Then they would let it go from Friday to Monday. Then by Monday, It would be necrotic again. I received no therapy during this time. In fact, I wasn’t allowed out of bed. Period.

Then, when they released me, they forced me to go to a "rehab center" (a nursing home). It was only for a month so they said. They sent me to a Nursing & Rehab Center. In Belle Plain, Iowa. What a horrid place! I was on a Foley catheter. (an in dwelling catheter to drain the bladder). It was often allowed to plug up. At one point, it plugged off apparently in the night I summoned them that morning. After 5:00pm my wife went out and got someone to flush it out. After which I dropped over 1700 cc. of urine! (A normal amount would be between 400-600 cc.)

What a relief!! I was only allowed out of bed for showers. Unfortunately, they had neither a Hoyer or a sling that would lift me. (I was still not able to transfer yet). So I was limited to bed baths. When I would turn on my light for help (I was still bed bound at that time) it was not uncommon for it to be two hours or more before someone would come see what I needed. Then, as often as not it would be "ok. Just let me run and do whatever real quick, I’ll be right back" they would turn off your light, leave, & forget to come back.

Or then there’s the time they sent me, by ambulance, to Cedar Rapids, to the hospital, to see a doctor specializing in wounds like mine. When I got to Cedar Rapids, They didn’t know I was coming, they had no such Dr. that could see me. They didn’t even have a bed to examine me on. So, back to the "rehab center I went after seeing a nurse. When I got back to the rehab center, they wanted me to go again the following week. They said this time the doctor was scheduled to see me. But that’s what they said the first time. I flat out refused!

Then, as it grew close to time for me to go home, just before Christmas, they wouldn’t release me. Telling me I would die if I went home. They said I couldn’t get the care I needed at home. I knew THAT was B.S.! Their own Doctor said that I would be better off at home, and that there was no reason that we could not do at home everything they were doing for me there. Next, they tried to play me and my wife against each other, telling her that I didn’t want to come home.

Thankfully, I had a cell phone. So my wife called me direct to see if that was so. I had never said any such a thing! Once again, I blew up! When that didn’t work The "rehab center" then contacted my insurance, and told them that I was leaving against Doctors orders (AMA). The insurance co. called me and told me that if I did that, that they would no longer cover me. I called the Doctor to see what was up. Turns out that he had no problem with my going home and in fact, recommended it. He was not too happy about the "rehab center" putting words in his mouth, so to speak. I had the insurance company call him direct. Then they called me back after talking to him and gave me the go ahead to go home.

Then, the very night before I was to go home, the head nurse of the "rehab center" came in to talk me out of going home. She tried to scare me into staying. She (in a very serious voice) told me I would die if I went home. By this point I was mad beyond belief! You don’t try to play me and my wife off against each other for one, and I thought telling the insurance that I was going "against medical advice" was a damn dirty trick as well! I said I was going home for Christmas. She said they could let me out, take me home by ambulance, and bring me back by ambulance. We were talking maybe 4 hours max. I said “When I get out I’m not coming back, period!” Then, she played her hole card. She said "We have some papers up front for you to sign in the morning, that say you are aware that you might very well die, and that you are willing to accept that responsibility. That you are leaving against our advice, ect.” She really stressed that dying thing. (I guess I was suppose to stew on this all night and change my mind in the morning). She didn’t know what to say when I said "Go get them! I’ll sign them right now! Why wait?" She said no, we can do that in the morning. Needless to say, I didn’t change my mind!

More Stories By Rudy Sims

I am currently 31 years old I have a disability called cerebral palsy and I am in a wheelchair I was born with cerebral palsy and I have had three operations to try and manage it. My last operation went badly and I experienced very severe postoperative chronic pain for 10 years. I am doing great now and I want to help others with disabilities and chronic illnesses cope effectively with their conditions.