My Story - Part 2

It is amazing the things we take for granted. There are so many things that I can't do anymore and things that just take too much out of me to do. Most people don't understand that. When friends would come around and want to go do this or that I just could not go. If I did the next 3 days would be pure hell for me. I would be in so much pain that less than an hour out and all I wanted to do was come home. Friends began to fall by the wayside. Let's be real, who wants to hang around with someone who is always in pain and just can't do much of anything anymore? After awhile they stopped asking me to go out with them. They got tired of having to be the one to visit my house all the time. I tried to keep up for awhile. I tried to act like I was fine and do the things that any normal person would do. I just couldn't pretend anymore. For my own health and pain levels I had to come to terms with the fact that I was just not normal anymore. One day I looked around and there was no one left around. My friends had all moved on with their lives and I was just not part of that anymore.

My marriage which was struggling before my fall could not survive this disease. After 9 years of marriage we calmly split. No big fight or court battles. I was alone for the first time in 10 years with 2 small kids and a disease that barred me from working and supporting us. Now that I wasn't married anymore I found myself homeless. The only income I had was the child support that I was getting from my ex. The kids and I moved in with my parents. I had to put some money towards the bills like groceries and things. I couldn't burden my parents with everything. I was already giving them so many more headaches and trouble than I ever wanted to. I felt guilty about it all the time. My medications were pretty much draining any money I had. This led me to make the toughest decision of my life. I didn't renew my nursing license. I had to make a choice of paying for my license which I would never be able to use again or pay for food for my kids. The decision was easy of course my kids come first but I cried for 2 hours straight once I made that decision. This disease just robbed me of one more thing.

Thank God for my mother. She was there for me everyday. She was the one who drove me to all my many doctor's visits, my therapy appointments and sat with me through countless surgeries. She was there to take care of me after the surgeries and to take care of the kids when I couldn't do it. She became more of a mother to them that I was. I just couldn't do the "fun" things. I could barely do the "need to" things. My mom was the one to take them and pick them up from school, to take them shopping for the things that all kids need. All the little things that we just never think about we just do. My life pretty much revolved around the sofa. I lived there, I ate there and I slept there. My mom was doing the house work, the cooking, the cleaning and taking care of the kids. I felt useless. I felt like I had lost all purpose in life except to take medication and to feel pain 24/7.

At some point during all this I received a WebTV as a present. For any who don't know what that is, it is a way to access the internet without a computer. I relentlessly researched anything and everything I could find about RSD. I talked to other people just like me from all over the world. I didn't feel so alone anymore. There were others like me. I wasn't a freak. I also started chatting in a chat room and there I met someone who would end up sharing my life with me and make me feel like a person again. I met my husband Joe. All I kept thinking was this guy is nuts. He wanted me to be part of his life!! Me and all my baggage. After a few months of dating me asked me to move in with him. I thought he had lost his mind. Did he know what he was really getting into? He said he did. He wanted me with my disability (knowing that I would never be able to work again), 2 kids, 1 dog, 1 cat & a bird. Meeting him and agreeing to marry him was the best thing I ever could have done.

My treatments continued throughout all of this. I had 5 spinal nerve blocks but I only got relief for 10 hours or less. The doctors felt the risks were outweighing the benefits. So we stopped that. I was on so much medicine that it was shocking I was even functioning. The next treatment we tried was a spinal cord stimulator. For awhile there I thought we had found the answer. A spinal cord stimulator is basically a battery pack and computer chip that is implanted in my butt connected to electrodes that are placed in the epidural space of my spine by the nerves that went to my right leg. The way it works is that it sends signals to the nerves that almost felt like the pins and needles you get when your arm goes to sleep. These signals block the pain signals from reaching the brain. I went from crutches to a cane. I was able to walk more than a few feet. I was getting around again. It wasn't a cure. I was still on a lot of medications and still had to be careful to not push myself to hard but I was walking and better yet, I was doing things with my kids. I was on top of the world.

Like in anything if your on top you can always fall. I fell, crashed and burned. I was trying to do something (can't remember what at this point) and I tripped over a wire and fell. All the progress I had made was gone. I was back on crutches and in a wheelchair if I went out anywhere. I was unable to do anything again. My pain levels sky rocketed. I have never been that well again. That fall put me into a downward spiral. I have had a total of 8 surgeries on that knee. I am on medication that has stolen my memory. I have lost days. I have forgotten surgeries (my husband is my memory when that happens), I have forgotten things that happened with the kids, we even had a dog for 2 days that I don't remember having. This disease has robbed me of so much more than the ability to walk. It has taken so many things that people take for granted. Things that give you quality of life.