I couldn't sleep tonight too well, guess I'm a little more worried about my upcoming heart tests in the morning than I thought! And then there is my husband's consultation with the surgeon on Friday. And just when I thought things were starting to settle down! Hmph....life always goes and throws a curve ball at you. I'm also very saddened to hear that my dear sister-in-law had to put her & her husband's 12 year old German shepherd dog Katya to sleep yesterday. She couldn't move her back legs at all and had long standing hip problems. She was in so much pain, it comforts me a little to know she no longer is suffering. It still hurts, though. So I've been thinking about them, too. So I figured, hey.....why not put my blog to go use and record some of my inner thoughts about having fibro? I'm sure those of you that have fibro or know someone who does, have had these same feelings.
I think for me, the worst part about fibro is not knowing when it will strike again. Which body part is up next on its target to make my life a living, painful hell!! And then, to top it off, if you can't sleep very well for a few nights (and all it takes is a few!) you go into massive flare-up that will guarantee that you will be up many more nights trying to deal with it! Fibromyalgia is soooo screwy! You can't sleep because of the pain, but the pain is why you can't sleep! I just don't understand this disease at all. You'd think after dealing with its crap for 14 years, I'd be closer to having a handle on this disease. NOPE. Not even close!
The second worse thing about fibro is knowing that a lot of people don't QUITE believe you are in as much pain as you say you are. Or exhausted as much as you say you are. I've had so many people when I was working say to me, "You are so young! You don't look sick or tired. You should try being MY age...." I HATE that! What, so I'm young and look normal (except for the Prednisone moon face!) that means I can't have pain or be exhausted from a disease that causes pain and exhaustion? It was no better when I was diagnosed with arthritis. I got comments then along the lines of...."What, YOU? Arthritis? That's for old people!") I just can't win. I guess again, because I'm young, my joints are automatically immune to rheumatoid arthritis. Aye carumba! It just makes me soooo mad the ignorant comments people make. When I was working at my job at the hospital in Yuma, my boss never believed me about having fibro. When I would have massive flare-ups and couldn't even walk, she would still expect me to be ready to go at 7pm for my shift. And if I wasn't, I was always called into her office because of my attendance issues. I told her about the fibro, even left her an article about the effects of it, but I might as well have been talking to a brick wall. I quit that job after working there 10 years when I no longer could do the rat race of running like a chicken with my head cut off, taking care of 12 acutely ill adults with cancer (on chemotherapy which requires a lot of monitoring) and kidney failure (on peritoneal dialysis which takes even more monitoring) and all the ER admits that would come up all in one lump sum. I could never find enough help because they always thought night shift sat around with our feet high on the desk, eating bon-bons and talking about our weekend plans. So they only had a set amount of nurses on shift and it was never enough.
In 2003, I quit that job and started another at a rehab hospital that just went up in Yuma. I loved that job. A lot less load and stress (which fibro just feeds off of) and I had a manager that believed I had fibro. I struggled with should I tell her I have fibro or not? There's a big debate about that and my thoughts are, better to tell early in the game then to wait and have a massive flare-up and then you are forced to tell your boss why you are not at work. Then they wonder why you kept it secret. I worked the rehab about 3 years, then the wonderful manager I hired in with left and in came the manager from hell. I could go on and on about how she treated me, but I don't want to think about that, much less write about it. You get the drift....she didn't believe me, our work load increased and I couldn't do the job. So I had to leave that job and go to one of the local nursing homes in town for another job. A couple of my rehab nursing friends were at this nursing home, trying to get it back to snuff after being fined big time after failing some of its health checks by the state.
I only lasted 6 months at the nursing home. My friends turned on me and the patient load there was atrocious.....I had over 100 residents to watch over! And all the paperwork. NO health insurance or benefits. My friends (and I use that term lightly) promised all these great things and NONE of them came to pass. Not one.
So, I was back to looking at hospitals for employment. I landed a travel nurse job and had a few assignments, but it was exhausting to keep moving after every contract ended (which was about 3 months each contract), so I didn't last long at that. Then came San Antonio and my job there....I spoke about that in early entries of the blog, so I won't go into detail here, just to say that here I was, emotional eater that gained tons of weight, lugging my body on joints that just screamed out in pain, I knew I wouldn't be keeping this job long, either. It's just to physical and youth or no youth, I just couldn't keep up anymore.
So, my mom dies and we come to Phoenix and I applied for disability for the first time August 2008. I filled out the 900 forms the government required, gave the list of doctors I had seen and sat back and waited....and waited...and waited for over 6 months. The letter finally came. DENIED. They said that due to my age and employment skills, I should be able to find a job that will conform to my disabilities. They also said I could stand for three hours, which was sufficient enough to work as a hospital nurse. All I gotta say is....what planet did they just zone in from? I couldn't stand 3 MINUTES, let alone hours. I have horrible pains that shoot from my back to both legs and doing even a walk down the block is sheer agony for me. With carrying so much weight on me, it just was a nightmare on my joints. Plus, all the disability board had to go on was ONE lab report and my Yuma doctors notes. My rheumatologist in CA never sent the records to the board for review. So, I took all the info I had, got my records myself and looked through the phone book for a lawyer. THAT was not an easy thing to do...you know how many disability lawyers there are out now? TONS! How do you chose? I saw a picture of a nice looking lady who specializes in pain and suffering cases, and I definitely had THAT, so I thought she was my gal. I called her up, she sent me the forms (another packet with a ream of paper in it!) and we set up a phone interview. This was around the time of the swine flu scare, so she wasn't seeing anyone in her office. She told me she does her work over the phone. She wasn't kidding....to this day, I have never SEEN her, only heard her voice over a phone. I don't know why she won't see people in her office now and I find it strange that she can represent someone she's never even seen. Anyway, I put all that aside, and she helped me file for an appeal. And then we waited again.....and waited....and waited. The appeal came back....DENIED. I was devastated. How can this be? I paid into that crappy fund all my working years and now when I really need money, I can't get it? Yet, I see all kinds of people on disability for things I think they shouldn't be...like for minor depression or get this....difficulty sleeping! I kid you not. Unbelievable!
So, my lawyer filed for request for a hearing and that is where I'm at now with the process. She said it could take up to a year to get a hearing date. I haven't heard a word from her OR social security in months now. My lawyer wants to have my case heard by claiming I have severe depression and unable to function because of the loss of my mother. Plus, I'm on all kinds of medications (esp. the anti-depressants used to treat fibro) so I must be horribly depressed. I tried to tell the lawyer I didn't like this approach, being that I'm NOT severely depressed, I CAN function without my mom (I miss her terribly, sure, but it doesn't interfere with my daily activities!) and I'm taking the Savella, Paxil & Trazadone for the fibromyalgia, NOT depression. I told her I thought we'd have a better chance with hearing my case on the basis of the bulging discs in my back, morbid obesity (I hate that word!) radiculopathy, which is another name for sciatica. I even had proof....the MRI I had in October of 2009....but she wouldn't hear anything of it. So, now with the new developments with my heart and having these tests, I'm going to see what the results are and call the lawyer back and let her know I'm seeing a cardiologist now, on top of everything else. The cardiologist suggested that if the tests are OK, and he said that my weight could be the cause of the screwy EKG results, that I go for the lap band procedure to help me lose weight faster since I can't exercise. I use a walker and can't even go around the block now, my back and legs hurt so bad from the bulging discs and neuropathy. If I could have the surgery to correct my back, I think I can go back to work since the Savella has done wonders for my fibromyalgia. I think it actually is in semi-remission and rears its ugly head every now and then with a bad flare. Especially if I'm worried about something and can't sleep....like tonight. I'll probably pay for this dearly in the morning!!
If anyone has had that lap-band procedure, I'd LOVE to hear about it. Please leave a comment or email me with your experiences.
Alrighty, I think I can try and go back to bed now. Thank you for listening and I'll keep you posted about how things go with my test and my husband's surgery appointment. Please keep us in your prayers. We need it! And I will pray for you, too.
Until the next post,
Have a great day!
FibromyWHAT? by Melissa Schranz is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.