Living with RSD

March 2006… That is when my life changed … slowly turning into my own Icy Hell!

I had just gotten home from work. My mother-in-law was at the house waiting for my husband and I to get home because she had brought my husbands son over for a visit. I was going to the other side of the van so I could say ‘Hi!’. It happened so quick. I had walked into a hole that was left behind by an utility company. My right foot stepped into the hole, hit the exposed pole, and twisted my right ankle. With my right foot being stuck in the hole, my left foot hyper extended and my knee crashed down onto the curb.

At first I was embarrassed. My husband realized what I had stepped into and helped me up. I tried to laugh it off, but my right ankle, my left foot and knee, were in a lot of pain. I went inside and pulled up my jean to look at my knee. It was already swollen, scraped up and bleeding. My right ankle had also already started swelling as well. I went on to work the next day… actually I went to work for 2 weeks. It was so difficult working with my ankle being twisted and my knee pain but I have always been a strong worker and I wasn’t going to let some pain stop me from providing for my family. It wasn’t like I hadn’t already stayed at work before with a thrown out back, being sick (even with temps as high as 102)… OK, so maybe I was a bit of a work-o-holic, but I loved to work, I loved providing for my family…. I had a lot of pride in doing both things!

My knee was healing pretty well (outwardly, but was still swelling and discolored) I thought… but I noticed more and more that it was getting harder to get through my shifts. I was always pulling as much overtime that I could, and now I was looking forward to getting home as soon as I could because I had to get the jean material off of my leg. My knee would swell so much that my jeans were tight around my knee area. I was constantly trying to pull at the material to try and relieve the discomfort. Even having the jeans rub against my knee felt like someone having sowing needles on their fingers scratching me. I also started feeling a strange feeling of warmth on my knee. I decided to go to the ER after work one night. They put me in a knee brace and on crutches and gave me a work note. I didn’t wear my brace or take my crutches into work the next morning. I was afraid that they would make me go home. I did give my supervisor the note from the ER though because I didn’t want to get into any trouble for not reporting it. It didn’t matter that I didn’t have my brace or crutches, they sent me home anyway.

I was also set up with a Dr while I was in the ER, so I made it to that appointment, hoping he would give me a note so I could go back to work… That didn’t happen. Instead he put me on some restrictions. Work wouldn’t let me come back until I was cleared. But every time I went to the Dr, they put me on more and more restrictions. Work did allow me to have sick leave pay, but it wasn’t enough, I wanted to work, but there wasn’t anything I could do about it. So, I kept going to my Dr’s appointment. He tried some steroid shots, medication, and even referred me over to physical therapy. As time was going by, my leg became more and more sensitive to touch, the burning got more intense, and the external T.E.N.S unit they were using on me in physical therapy was becoming intolerable. So were the wraps, taping, and exercises.

I will never forget the first time my doctor brought RSD up to me. I had never heard the word before, and I have been in the medical field ( I was an EMT for years but also worked as a care specialist as well). He didn’t say the name yet, but rather was trying to explain to me what it was. At first I thought he was telling me that it was all in my head, that the pain I was feeling wasn’t real. I got defensive and started telling him that my pain was real and I needed help. He stopped me and told me that he believes me and then finished explaining what it was. He hadn’t diagnosed me with it yet but he felt that is what it was. Then my physical therapy girls started talking to me about it as well and I told them that my Dr had started talking to me about it too. I grabbed a pen out of my purse and wrote down ‘Reflex Sympathetic Dystrophy’.

What was this? I had never heard of it before until this all happened. When I got home I got out my piece of paper and started searching the web for a better explanation of what was going on with me. The more I looked, the more confused I was. How can this happen? This doesn’t make any sense to me. This doesn’t seem logical!! If my Sympathetic nerve can do this, then I should be able to control this with my brain. I should be able to just tell my brain ‘No! You don’t hurt anymore!!’ God, I wish!!! After I was officially diagnosed with RSD (About 6 months later), my work fired me because I had ‘reached maximum expextancy’ and they could no longer hold my place.

I was mortified! How was I going to be able to take care of the kids? My bills? I had to do something. I still looked for work. I even had an interview that one of the men interviewing me had RSD. His, unfortunately, lead to an amputation of his leg. But, I feel that is why I didn’t get that job. I was qualified to do it, but that guy knew something that I didn’t… It was only going to get worse… and it did. It had gotten so bad that I even filed for SSI and Disability. I HATED swollowing my pride. I have always worked for the things I have. I might not have my own home, or have the best of everything…. but I worked hard for what I do have and I wanted to keep working. To me, I was not doing what I should be. Work, that’s what I wanted. But as time went on, and my RSD got worse and started to spread, I realized that I needed help…. not for me… but for my kids!!

As time went on, my Dr got to the point he couldn’t help me anymore, so he referred me to another Dr that could. That Dr gave me a Lower Lumbar Steroid injection. It helped a very small amount, but not for long at all. Another Dr tried 3 Sympathetic Nerve Blocks. The first one helped for a while. OMG, I can’t even start to explain how amazing it felt to do quite a bit of what I could do before the accident although some of you may know exactly what I mean). I took every good day as a blessing!! Then the burn, swelling, and pain came back. I had to have surgery and because RSD doesn’t care if you are having surgery on the effected area or not, it came back with a vengeance.

The 2nd SNB didn’t help at all. The 3rd one was a few months later. I had gotten so used to not having shoes on that I went so far as to borrow some shoes from my neighbor so I could take a walk. I started walking in the morning and at night. It felt so wonderful! I was able to do my chores around the house, go shopping without wondering if I could finish the whole list before I was in so much pain I had to just get what I could and go, I was able to be the wife and mother my family needed. If you want to know what happiness is to me, it’s being able to be a wife and mother… and when anything takes that ability away… It kills me! That’s just what happened… Just as quickly as the pain level went way down… it came back to haunt me. I went through months again with no help with my pain.

My family and friends don’t understand my pain, and can’t help me…. so I got to the point of not even wanting to let them know when I was in pain. ‘Smile through the pain’ was my motto. But as my RSD progressed from my left knee, to my left shin and foot, up to my left hip… then later into my left arm, and right shin and ankle… I lost hope. ‘Why?!?!?!’ Is what I asked myself all of the time. Why did this happen to me? What have I ever done so wrong in my life to deserve this? Then I realized that I was feeling sorry for myself. Something I have always disliked in human nature… and here I was.. doing it. So I had to change gears. I got angry… VERY angry!! NOT the gear I wanted to change to. I was angry because I have to wear shorts in the dead of winter. Angry because I couldn’t wear shoes except for flip-flop type of slippers. Angry because RSD took my husbands wife away and my kids mom away…

I found myself not wanting to be around anyone because I didn’t want sympathy. I didn’t want the questions about if I was doing alright or not, or why was I wearing short when it’s freezing outside. I didn’t want to have to try and be pleasant to anyone when all I could think about was how bad I was hurting. Thoughts of wanting to cut my leg off have gone through my mind. Thoughts of suicide to get out of this pain have, and still do, go through my mind…. and anyone that knows me, and knows what my father did to end his own suffering, and most of all, knows my love for my own family, knows that those thoughts are a sign of weakness to me… until now. Why now? Can I possibly finally understand that pain, whether physical or mental, can come to a point that love for, and from, others can be covered by a blanket so heavy that your body and mind can no longer take it? I have a t-shirt that says that ‘Pain is weakness leaving the body’ …. If that is the case, then anyone with chronic pain like my RSD sisters and brothers must be the strongest people I know!

But, I am not strong… My daughter Kayla just told me the other day that she thinks I am the strongest person she knows… Instead of making me feel proud, it hurt. It hurt because I know that I am not strong anymore. It is a daily battle to get out of bed, to clean the house or run errands… to smile even though I want to cry… And sometimes when I do cry, I beat myself up for not being stronger… It’s a constant vicious cycle, and no light seen at the end of the tunnel. I was told that people that have chronic pain go through the same steps as people that lose a loved one, or have a critical condition themselves….

Denial and Isolation
Anger
Bargaining
Depression
Acceptance

I have gone, or am going through, each of these already… except Acceptance. How can I, or any of us, accept something that doesn’t seem like it is even something that can be real… something that robs you, and the people around you, from being who you were before being inflicted with this. Yes, I have RSD. Yes, I have accepted that… but No, I don’t think I will ever accept that this is all there is…. There has to be hope… There has to be something to hold onto in your life because if you don’t have hope… so easily it could be to end your existence. I can’t say ‘End your “life” ‘ because the definition of life is ‘1 a: the quality that distinguishes a vital and functional being from a dead body’- Quoted from websters dictionary. I know that my emotions and thought bounce from being positive, strong, angry, weak, hopeless, and hopeful… but that is my every day thought process. My mind never stops. Each day, or even each minute, my mind and emotions can change, as well as my physical well being. I am sure that every RSD sister and brother can understand what I mean, but to help those of you that are reading this, and do not have RSD, to understand part of what I go through…

Imagine that you have pain, almost non-stop, if not completely. The kind of pain you have ranges from liquid fire with shards of glass running up and down your RSD area, or the effected area was left outside in sub-zero temps overnight and when brought inside it was put in a tub of acid to someone holding an exposed electrical wire and touching you all over and you can’t pull away from it… There isn’t anyone or anything that can seem to help. Being jealous, and angry, towards people we see being lazy because they don’t feel like doing anything, when we would be grateful to be able to even get up to clean the house… Let me take that back… I have always been a hard worker, so I am not jealous over the fact that some people are lazy, but I do get jealous over, and I HATE to say this, but people that are paralyzed. My heart goes out to those that can’t get around, for what ever reason, and I wish their lives were better for them as well…. but to not feel the pain any more… I don’t even remember what that is like anymore…

I am still waiting on the spinal stimulator (I receive my trial stimulator on March 10th, 2009 - THANK GOD!)… That is my only hope right now. I try not to get too caught up in thinking that is going to ’save me’ from this… but I have to hold onto hope that it might!

To all of my RSD sister and brothers *Gentle Hugs*

Thank all of you for taking the time to read this!

(Here is a poem I wrote)

You can’t see
What it is causing pain in me.
You can’t feel
The burn running through me.
You can’t hear
All of the hope lost within me.
But…
You can understand
That I need you to support me!