For years (it felt like decades) I sought out doctor after doctor. I was diagnosed with Fibromyalgia. I knew that I did have it. However, Fibromyalgia rarely causes the extreme pain I was suffering from in my bones, and in my nerves. Fibromonster (a little personal twist on the name), attacks SOFT tissue. You know, little things like muscles, ligaments, and cartilege.
One theory on the syndrome (I was told it's NOT a disease. To be a disease you have to elicit a definitive diagnosis of something...like for example, Lupus). Fibromonster is a COLLECTION of symptoms that leads the doctor to find the diagnosis. If you care about that difference, disease/syndrome, potato, potaatoe, that's an important thing to note. If you, like me, couldn't give a rip whether it's called a disease or a syndrome, it's just as miserable under either heading, you are, no doubt amongst the majority of those that suffer from the Fibromonster.
Talk about a blessing in disguise (a really, really GOOD disguise) it was the last two car accidents that I was in that FINALLY got me an MRI. The MRI showed damage that the X-ray had NOT shown. In other words I had damage in the soft tissue of my neck, middle back, and lower back. The thing is, what were they x-raying? The MRI showed damage to the bony vertebra in my back...lots and lots of damage.
One doctor actually said to me, "The Thoracic region of your back is the most stable part of your spine. We rarely do MRI's for that area." I wanted to say, "If you rarely do MRI's could it be that you are missing the damage?" That was the case in my situation.
Now comes the truly egregious part. I applied for disability with a private insurer that I had been paying to insure me for a long time. They sent me to a doctor. One that THEY PAID? Can you say, "Conflict of interest?" Not surprisingly the good doc said that I DIDN'T even have Fibromyalgia. He said that I had Depression and Anxiety disorder. I tried to explain that YES I did suffer with those two conditions. However, I had never struggled with them UNTIL I HAD FIBROMYALGIA!
Even though I had FOUR, count them, FOUR independent clinicians that had diagnosed me with Fibromyalgia, this arrogant, egotistical doctor being paid by the disability insurance company told the insurance company that I did NOT have Fibromyalgia. I ONLY had Depression and Anxiety Disorder.
Now you may wonder, why diagnose me with anything at all. Well they KNEW that I had all the challenges that I told them. I had all the medical records to acknowledge the situation. They figured that since Clinical Depression and Anxiety would be excluded after two years, they were safe. Safe because most patients applying for Disability were simply too ill to fight with them.
Again I went the rounds with this estimable company. I faxed all the clinician's diagnoses. I went around and around with them so much that I got very, very dizzy!
Interestingly enough, even though they discontinued my insurance payments after two years, they never sent me another notice for payment due on my insurance policy. I would receive notification from them every few months, "Premium waived." Since by their own records I was no longer eligible for disability, why would they waive the premium?
The disability insurance moguls are quite canny. They realize that most people too ill to work are also too ill to battle with them. Many disabled simply give up after one attempt.
I believe I just heard somebody say, "But what about fradulent claims?" When it comes to the Social Security type of disability there is fraud. I don't believe there is quite as much fraud with private insurers. The litmus test to disability should be, if you DON'T fight very hard. The frauds fight long and hard. They have enough health to fight.
I watched a TV program last night about different types of Scams. It was absolutely creepy to watch the Private Investigators spying on those who claim disability. They showed one man riding his bike around town. This proved clearly that he is NOT disabled. I take exception with their outside decision. They have no idea if he just took pain medication. It is especially necessary to find ways to exercise when you are disabled. If you stop exercising you will be in even worse shape quickly.
On the other hand, the man who had his own construction business and was merrily roofing homes, stringing electrical wiring, and lifting sheet rock, THAT IS FRAUD! If you can work 8 to 12 hours a day doing something that brings income to you, that is called employment, you know the type of thing that you CAN'T do because you are too medically impaired!
I knew a man in his 30's who had truly been injured working in construction. After several months he went back to roofing, and general carpenter types of work for 10/12 hours a day. Yet he still collected the taxpayers money. I wanted to slap him and say, "HOW DARE YOU! HOW DARE YOU, spend money that we the tax paying people give!
The worst thing about this situation, the increasing fraud of Social Security Disability benefits, is that it makes it much harder for those who legitimately have paid Social Security for possibly decades to collect when they genuinely need it. (WOW, that was a very LONG sentence). It was a very important run-on sentence. Fraud from some means doubt for all. There, I knew I could say it in a shorter sentence.
There is one extreme, the doctor who refuses to even do the diagnostics needed to gain a diagnosis, or the doctor who is paid by an insurance company to give the diagnosis that the insurance company wants. The other extreme is the person who knowingly defrauds the Social Security Disability system.
We've come a long way from the television show, "Dr. Marcus Welby," or the show in the early 60's (time has taken the title of that show away from me). It was starred with Richard Chamberlain and Ben Gazarra was his grumpy but kindly boss. In these shows there was ALWAYS a diagnosis. There was never a time when they said, "I'm sorry but I have no clue what is going on with you. Since I can't figure it out it must be all in your head. Good luck."
How about Dr. House? As crazy, annoying, and socially impaired as he was, he enjoyed the hunt of finding out what WAS wrong with the patient.
We live in a time of medication by insurance. Doctor's actually will prescribe a specific medication for you, even if they know that another medicine might actually be better for you. They prescribe medicine that your insurance will pay for.
This dynamic of medicine by insurance also means that if a test or two is done to diagnose your condition and nothing is found they quit. For example: I went to the Emergency Room one very miserable night. I was in excruciating pain. Nothing was relieving it. After two diagnostic tests the good doctor came back and said, "Well, it's not this, and it's not that. So we're releasing you to go home." Wait a minute? You know it's NOT these two conditions. What IS IT?
Imagine my annoyance when several months later (after two more trips to the ER), an 8 millimeter kidney stone was found. It was far too large to pass so it was necessary to have surgery to remove the stone. At any time that stone could have caused my ureter to rupture. How is it possible that I was never tested for a kidney stone during those other three ER visits?
The doctor of my youth was amazing. When my asthma was incredibly severe he studied, did research, and found a clinical trial of a medicine that was in England. Somehow or another he got me included in the trial. That medicine changed my life. I gained more stability in living when I didn't have to worry that at any moment I might have a major asthma attack. He did NOT diagnose by insurance. He pushed forward to find solutions to a problem.
One of my friends has struggled with diabetes for several decades. She has now developed a condition where she can be speaking to someone standing up, and then just drop to the ground. She also has spasms that ripple through her entire body. One of the medications she was given (her insurance would pay for it) made her condition even worse.
She has been to multiple doctors. They perform a test and say, "Well, it's not this or that. Good luck. One even had the temerity to tell her that it was a psychological condition. Believe me she does NOT wish to have this health issue! Nobody is giving her answers. Nobody is sticking to the battle of diagnosis. She is left to be her own advocate in a medical world ruled by insurance.
My Papa wrote an essay in 1952 for one of his college classes. It was in regards to the huge divide in our medical system for the Haves and the Have Nots. The point of his essay was that in our country there are two different systems of medicine. For the Haves, the battle to find a diagnosis does not stop until it is found. For the Have Nots, if a diagnostic test or two doesn't locate the problem, it simply must be psychosomatic. Imagine, money being a qualifier for finding medical answers to ongoing physical problems? If you have lots of money, or great insurance your doctor will keep searching until he finds answers about your health. If the opposite is true, your condition will be labeled as psychosomatic?
If you are in this medical quandry, do NOT give up. Keep searching. At least we have access to all types of information. Keep looking, believe in yourself. DON'T GIVE UP! DON'T EVER GIVE UP!