Can you believe it’s January 11, 2012???

I know I haven’t been around much here lately, and I’m going to do something about that!!!

I have many, many medical problems. I have been dealing with my disability insurance company since June. They say, since I wrote a book (took years to do!), can write on a blog, and I guess they think because I’m not in a total vegetative state, they think I’m not disabled.
Now, trust me…if I could work, I definitely would. I didn’t wait until I was 40 to go to school in order to become a nurse, only to be disabled a few years later. I don’t like having one surgery after another, after another, after another….Let me explain….

I will go back to when this mess started…. April 2005…
I was taken out of work due to my herniated discs in my back. June 2005, major back surgery… rods put in my back…Now, not to go into great detail, I had some relief for a few months but things went down hill…
October 2006….more back surgery…first rods taken out, now rods put in complete lumbar spine (lower back, to the tail bone)…
2007…Jaw surgery, joint in my lower jaw locked, (bone in bad shape)
2008…Pacemaker…my heart decided it didn’t want to beat fast enough…
With out going month to month and year to year, let me tell you what else I have had since 2008..
2 surgeries on my right shoulder
3 surgeries on my right hip
Now, I think that’s 9, count them, 9 surgeries since June of 2005…The last hip surgery made my 34th or 35th surgery since I was born. I’m not complaining, I’m just saying, I have worked since I was 11 and 12 years old. Between paper routes and babysitting as a child myself, I have always taken pride in trying to “pay” my own way.
I suffer from terrible bones. I started the degeneration process way to young and it continued to get worse. I didn’t find all this out until a few years ago. I have been told that I may be in a wheel chair soon because of problems I have with standing for too long or trying to walk very far. It causes me so much pain.
With all this being said, I also suffer from fibromyalgia, chronic pain, chronic fatigue, osteoporosis, degenerative disc disease, arthritis, and who knows what else.
I have tried to work through this pain, do any of you know just how hard it is to HURT everyday of your life? I try to stay positive, try to be “happy”, try to be there for all my friends and family…it isn’t easy.
I hear all the time, “You don’t look ‘sick'”. Well, who wants to “look” sick? They don’t see me, like right now, still in my jammies, trying to get myself up to get a shower and get dressed.
The chronic fatigue causes me to have a week or two where I can’t get up out of my own way, then a couple weeks where I can’t sleep but for only an hour or two at a time. Sleep a couple hours, up for 3 or 4, then another nap. Now, do any of you know of a job I could do where I could work a couple hours, sitting down, then go home for 2 or 3 and then maybe work another hour or so??? Then, the next couple of weeks stay home because I sleep 20 out of 24 hours???
Okay, now, because I stay in pain,. try not to take pain medications, try therapy, try to walk a little further each day to see if I can improve the muscles I have left, try to act “normal” for my friends and family by doing some house work a couple days a week, I’m not disabled??? I haven’t “cleaned” my house for years. My husband works all day, comes home and takes care of me by doing most of the cooking and cleaning. My friends and family come over and help me all the time. They know on the days I feel somewhat “normal” I will overdo, then end up in bed for another 3 days… It is a terrible cycle. I don’t like it at all…

To top it all off…my many doctors, tell me that they won’t release me to work. Who in this world is going to hire someone not released to go to work? What kind of risk would they be taking? Furthermore, how safe would it be for me to be working anywhere while taking pain medications? I don’t think that would be safe for anyone.

So, I need to know what you think? I am not trying to take advantage of the insurance company, and I’m also not going to give up. I would love to be able to get better. The problem is, my joints and bones don’t want to play fair…This doesn’t mean that I am going to stay in a bed 24/7. I am going to try to lead as normal a life as I can, I am only 53 years old. But that doesn’t mean that I could hold down a 40 hour a week job, or even a 20 hour a week job…


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