HOW AND WHEN DID YOU GET RSD?
I slipped on ice on the sidewalk on my way into work in February of 2012. Since I was on my way into work, this has been a worker's compensation injury. The worker's comp issue could be a story of it's own. I was simply diagnosed with a bone bruise and was told my patella was not tracking correctly. I was given a long, hinged brace to wear. I did have an initial 3 weeks off work after the injury and, when I returned to work, I was told that my face looked like I was in pain and the customers could see it. I was told that it would affect my upcoming evaluation as poor job performance. Pretty ridiculous. I managed to work and not leave early or call in because of the pain. RSD was not discussed until the middle of June and I was put on the waiting list for the pain clinic at the hospital. I was scheduled for an independent medical examination for worker's comp. I have heard many horror stories of these IME assessments, but their doctor agreed that this was more than likely RSD and that I needed evaluation and treatment, and sooner rather than later. My attorney told me this was extremely rare. When I finally got approval from work comp to go to pain management, my doctor had me pushed to the front of the waiting list because he knew time was of the essence. I was not officially diagnosed until the beginning of August, although I am pretty sure I had developed it by the beginning of March. When I realized the pain management doctor believed me about the pain, I sat and cried in his office. I was so thankful to have an answer about why I was hurting so much and have the compassion of the physician and his staff. He came in twice during his vacation time to do my first two nerve blocks because he didn't want me to lose out on time that could possibly help me go into remission.
IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
I had recently lost 40 pounds and felt really good about myself and was having a great time, going out with my friends and being active. I had also recently been divorced and really for the first time in my life could do things just for me. After I got hurt and the pain started getting so bad, I almost completely shut myself off from everyone and everything. Only my two boys, who are 19 and 21, really knew what was going on with me, and I tried to hide the pain from them as well. Now I am not working, and I rarely step out of the house. Also, with this being worker's comp, I was not able to continue renting my apartment and I am now staying in my sister's basement. I was dating a very nice man who has two beautiful little daughters who are 7 and 8 years old. At first, I could play with them and have a great time. As the pain grew worse and worse, I realized that I could not give of myself the way those girls needed me to. I could not even walk through a store with them. I had to end that relationship, and although I was not "in love" with their father, I loved (and still love) those little girls, who desperately need a mommy. I just couldn't have them keep thinking I might be there for them like that. I also feel that I need to get myself as well as possible before I can really give of myself in that way.
DO YOU HAVE A GOOD SUPPORT SYSTEM?
I have to answer this question with a yes--and no. I know my family understands that I have this condition and I am in pain. I have 3 sisters and they all have Fibromyalgia (so do I) and have also had multiple surgeries and health problems. It kind of gets to the point where, if I say something about how I feel with this, of course they know because they have Fibro, etc. One of my sisters and her husband have let me and one of my sons stay in their basement because they understand the financial aspect of my predicament. I never try to make it sound like the pain I have is worse than what they feel, because pain is so subjective. I do have to say that I wish I could go back to the days when my only diagnosis was Fibromyalgia. I have an older brother who also has RSD and, although he lives in another state, he has been able to answer questions. I have a few really great friends who take me to doctor appointments if they are out of town. It is really difficult, though, when they want to get together and go to dinner, shopping, or other things that I used to be able to do. I know they understand that I have this condition, but I know, too, it's hard for them to understand - if they have arthritis, a bad back, or any other condition that causes pain - why they can do these things, but I can't.
DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
Yes, I have been a Christian since I was very young. I've been through a lot in my life, healthwise and in general. I know I couldn't have made it through anything that happened in my past without God and, because He has been there for me through it all, I know He is with me now. If anyone understands pain, it is Jesus. I think about the pain He endured being beaten and crucified and I know no matter how bad I feel, He understands.
HOW HAVE YOU RE-INVENTED YOURSELF?
I have had RSD for less than a year, so I don't think I have re-invented much about myself in that amount of time. I think I am just now realizing (even though I knew because I've read it and heard it) that this isn't going away any time soon and I need to learn to adjust. I have had to learn ways to dress so that I don't have clothing on my leg because of sensitivity. I also cut my hair short because I can't stand for very long to be "prissy" with myself, although I still fix my hair and put on make up if I'm going anywhere.
HAS ANYTHING GOOD COME FROM THIS TRIAL?
I know good will come from it, but I can't really see the whole picture yet. I know I want to be an example of strength to others. I research a lot about this condition so that I can raise awareness and also to help people who are diagnosed with RSD. I am still learning myself. If I have to go to vocational rehabilitation, I really want to go to school to be a counselor or an advocate, specifically in the pain management arena.
WHAT THINGS DO YOU MISS THE MOST?
There is so much that I miss, but I think what I miss the most is my independence. I can still physically do everything for myself, but not being able to afford to live on my own is the hardest part about this right now. I know it's temporary, though, so that makes it a little easier to handle.
WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?
I want the general public just to know this condition even exists. It gets exhausting explaining it over and over again. I think that if people knew even a little bit about it there would be more understanding and compassion from people.
*THESE ARE GENERAL QUESTIONS, IF YOU HAVE MORE TO SHARE, PLEASE DO SO HERE.
Specifically, concerning cases of RSD that stem from workplace injuries, I would tell people not to let your employer or their worker's compensation insurer bully you into backing down. GET A LAWYER. That really applies to all work injuries, but this condition is hard to diagnose, is difficult and expensive to treat, and is not curable. I had to fight even to get an MRI because my employer's treating doctor sent me back to work with very little restriction and no need of any further care. The HR manager told me she didn't want to hear anymore about it. Also, don't expect any compassion from your employer. All they are thinking about is how much their premiums are going to go up because of your injury. I was with them for 5 years, but it was very easy for them to blame me for slipping on ice on their sidewalk that hadn't been salted. No one is going to take care of the situation for you, so you have to do it yourself. If I had let them bully me, I would be unable to work and unable to pay for medical care for a monster of a disease that definitely needs attention.
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