Thursday, April 5, 2012

Learning How to Deal With CRPS or RSD

Just a few days ago, I think I finally realized that this isn't going to get any better.
I have always had a very hard time accepting things, life changing events, and things that aren't what I would prefer were happening. Not that I try to pretend that it isn't really happening, or that I act like
it isn't there. But, I try to steer clear of discussing my fears and have always tried to stay strong and be happy, no matter what.
One thing I will never understand is how some people go through horrifying life changing events, and how they stay strong, and I will never understand why and how people get through chronic diseases, being told they will die from something, or that they have only a few months to live, etc etc. These things bother me, and I have a problem with trying to imagine what it would be like to be that person, and how I would cope. I feel sorry for these people, and families, and I feel guilty sometimes that I am happy and content where I am, and that I complain about things that seem so irrelevant, when there are people out there living in the streets, dying from cancer, and being told that their child just passed away from cancer. I think this is why I have always taught my children, and myself, that there is always somebody worse off then you, no matter what. This is true, and it helps to cope with things that are happening in my life that aren't what I would consider, positive.
I believe this is also a fault in some ways, and I tend to then overlook what is happening in my own life, and when I am in pain, I think in my head, over and over, to stop complaining, because all I have to do is turn on the TV or the Internet and I will see somebody who has it much, much worse then me. That normally stops me from being so miserable about my own life and situation.
I still can't grasp the fact that I have a real disease and that even though I may not die from it, I have had to endure and will continue to endure, some fairly rough changes. I tend to feel selfish when I think about what I think may be "small" changes in my life, but then again when I look at what has changed in my life, how it has affected my husbands life, my children's life, and others around me, I start to think that RSD is a pretty awful disease. I would never wish this on anybody, and feel terrible for the "new" RSD sufferer's I meet online and at my doctor visits. They have no clue, I think to myself.
It has been several years since I have had to deal with constant pain. It started a long time ago, back when I was a teenager, when I would walk to the mall, school, my friend's houses. I just assumed it was weak ankles and I did walk a lot! Plus, it wasn't constant, yet. I did have some sprains and joint pain, and never thought for even a second that this pain would end up following me through the rest of my life.
When I was a mom for the first time, I took my little princess everywhere;) We would walk in town to eat lunch, shop, and walk around the malls and shop, lol. We would go for walks, and go to the park, and a few years later, when she was a toddler, I also started working a few jobs, (I guess to pay for all the shopping lol!!) I always waitressed, and also took a few pt jobs when I could, normally seasonal, at toy stores, video game stores, (they always at least gave a nice discount for employees;)
Anyway, my point is, I was on my feet, much longer then normal, and I figured that was why my ankles hurt like crazy. I have been a bartender since 18, (just about 20 years now), and as much as I love my job, it seems this is the real always opted for a walking cast, although now, I have no idea as to why the patient was allowed to choose this option! But, I wanted to make sure I didn't miss work, or anything else that is important to me, and having a cast would have driven me nuts!
Thanks to my ridiculous choices, I ended up with several busted bones in odd spots that just never healed and arthritis, a couple torn tendons, and of course some major pain! But yet, I still tried to hold treatments off. I just didn't have the time to deal with such an issue, and I didn't seem to have a doctor any of the times that I did break a bone, who told me that it doesn't matter what I have time for. So, I continued down this path of being, well, a complete moron lol!
Years later, I finally had enough, after lots of arguing with my husband and my mom, and the fact that I really couldn't walk without limping and crying in pain with each step, and sometimes, I couldn't lift my feet off the ground, I couldn't wear shoes anymore, due to the pain and severe swelling. I had/have to drag my feet, due to some unseen force that makes it impossible to lift either foot, (typically my left is much worse)
I went every month for about a year, each time with even more swelling, and pain, and it definitely wasn't getting better. He finally sent me for x rays and sure enough, had a few page report from the hospital about my feet and ankles. He had already started to search for somebody to help me, and was having a hard time doing so. Quite a few doctors stated, "I wouldn't know where to begin", or "I would rather not be involved with that mess". I should have realized then what exactly that meant, and I wish I would've searched for a surgeon, rather then accept the first one who said they believe they can help me...
Finally, after another year, I had my reconstructive foot and ankle surgery done. She was going to do my right foot and ankle a few months after the left one, but due to all of the unforeseen circumstances, that never did end up happening.
I will have other posts about this ordeal, and I am sure you are getting bored and wondering when this will end, lol, so I will skip some of what happened next. (You are welcome:)
Anyway, a few months after this "surgery", my surgeon would no longer see me, return calls, or give me a note to return to work. I went in the horribly busy facility and demanded to be seen and finally a nurse came out with a referral to see pain management and even though I couldn't walk, and they knew what job I had, she asked if I feel I can go back to work, I replied, "I don't know how, but I have too! This is why I have been trying to get a hold of my surgeon!" and she stated that she can't release me for work until I just answer the question with a "Yes", so I did, and she quickly wrote a note and told me to make an appointment with pain management.
I am very grateful for my pain management doctor, She is really an excellent doctor, and so are all the nurses and staff. I do feel I am getting the best care and treatments I can get at this office, whether I like what is happening to me or not. The diagnosis I received, RSD, or CRPS, I had never heard of, and had no idea what either meant. I asked tons of questions and they answered them all, and no, I did not/do not like the answers, I am happy I have a doctor I can trust.
For the past few years I have had to cancel quite a few appointments and reschedule and I hate doing that, but I have 4 children, 3 that are still pretty little and have their own appointments and the travel time is tough, plus, I know now what some of the answers are and some days I just don't feel like being let down again.
I figured the last few years, that this will go away and I will get better, and I keep thinking positively. Even though I have yet to meet somebody who has "gotten better", other then the small possibility of a remission period, I kept thinking that there has to be a cure, there has to be somebody who knows how to fix this. I had lots of hope for the future of this disease and for myself.
I can't do a lot of things anymore that I once could, even with the amount of pain I had before RSD, I was still able to do certain things, and as much as it hurt, I just dealt with it and did what I could, of course a HUGE part of me is very, very stubborn.
I can't work like I once could and I can't figure out how to make up the income I have lost over the years. My husband works like crazy with our small trucking business. (he is our only driver;) and so I started the online earning opportunities. However, a lot of the time, sitting and even lying down, are much more painful and almost impossible, compared to walking or standing.
I am always trying to find ways to earn money, so I can stay away from having to apply for disability, I feel like I would be giving in if I apply, just as I felt when I finally gave in and took advantage of my handicapped parking placard. So, we have been doing without some things, and I do work pt at the bar, and I work on my blogs. But until we win the lottery, or until I end up as big as some other bloggers out there, I need to do something.
I don't know what it was, maybe the new layers of pain that just started last week, or the realization that this just keeps spreading and getting more painful and harder to sleep at night or walk or sit. But, I feel that if I apply for disability, I am succumbing to this disease and that is one thing I do not ever want to do. Stubborn or not, I have to do something. It is for my family, and I think that is what finally got to me
I consider this a fault of mine. Not wanting to accept things like this and just when I think there can't be anymore new types of pain, worsened pain, more spreading, there is. I started to wonder just last week, when does this end? Does it spread to your whole body? What happens next?
I am still learning about this disease, and what I am learning, I am not to thrilled about.
I will be starting my adventure on finding help and accepting my "fate". I do hate this and I hate to have to depend on others and I am not looking forward to this , don't think I have a choice anymore.
If you have any suggestions, tips, advice, on RSD/CRPS, disability, anything, please feel free to comment below!! I enjoy meeting people who share this horribly painful disease with me, and I hope to help others out there too!
In the meantime, please consider donating for RSD Awareness! There are tons of beautiful RSD angels out there, and they long for people to be aware of what happens to us, what RSD is, what it does, and maybe to help find a cure.


  1. You owe it to yourself & your family, to apply for disability, especially because it can sometimes be a long process. I have disabling health issues, but I am older then you. I wish you luck and hope things get easier for you! Please feel free to write if you need someone to talk to!! Debbie

  2. Thank you Debbie!
    That is a very sweet offer, and I will probably take you up on that;)

  3. Living with CRPS is indeed a constant battle. There's no getting away from it at the present time but sufferers should not let hopelessness into their lives. If you've got it, you must build the strength to cope and fight back, because that's what you have to do.
    chronic arm pain