The beat goes on...

Watched the Dr. Oz show today for the first time ever, due to his topic on Fibromyalgia.

Actually, was hoping that the whole concept of an ailment that I was diagnosed with back in 1994, and was pretty much responsible for me getting involved with the Arthritis Foundation, had new information to glean and pass on to people.

It is true that I had a savvy GP back then on the other coast of Florida, who recommended that I go to a Rheumatologist, who immediately checked me over and voila I was diagnosed! By the points being touched on my back, three physicians, all rheumatologists, after verified my DX the same way.

None of the bologna that others had to go through, at all!

Okay, I know that I was very lucky, but…

Being DX’d with Fibro, prevented doctors for looking for all my other illnesses, even when I could not walk for six months they blamed it for those six months of PT, OT, and NMT, not the infection that loomed large beneath the surface that would need a spinal tap to access, or even an MRI.

Oddly, enough I did have one, a MRI, if I recall, but with my wonderfully accurate diagnosis of Fibro, even though I was sent to first one than another neuro with the anomaly on my pictures it was not enough at that time from them to be sure, way back in 1996 or 7, can’t recall now, it took to 2005 to get the right DX! The second was a renowned neurosurgeon, i.e. albeit in local circles, said to me that Fibromyalgia was something they would tell you that you have when they didn’t know what you really had. But even he never said what I did have! And I knew even then it was not that whole story!

I had been involved in the Arthritis Foundation Fibro class and met my eventual mentor for all else that is me teaching Aquacize as a certified instructor, fund raiser, co-president of the support group and trained to teach self help and how to write grants etc. many with CEU’s.

My previous medical experience had consisted of just a couple of years of psychology in high school and college.

At the time coexistent with my involvement in AF I was going to Tampa to the University Hospital there that was the training ground for there medical school at USF and their rheumatology dept. was given a grant for research pertaining to Fibromyalgia and I became a guinea pig.

I was given everything from the usual, tricyclic antidepressants to L-dopa given for Parkinsonism and everything in between on three month intervals, since that is how long they seemed to work. Eventually that doctor left to go to NYC and from there to Israel. Interesting that is where my Copaxone came from around that time.

Any-who, as I became more immersed and involved in the foundation as a board member I was invited to meet the physicians that received funding from the foundation for specific arthritis research, mostly for RA, Rheumatoid at the University Of South Florida. I was not part of their funding as a subject for their research at that time, in fact to this day I do not know who paid for that research I was involved in, I did have great insurance then and I don’t recall seeing any bills. I was invited as a board member this time to go to a research presentation by medical students as well as their medical counterparts, with their medical doctor physicians’ professors. When on a break that is when I spoke to one of those doctors and I asked him if they would be doing a study on Fibromyalgia in the near future and he put me in touch with another doctor there for the seminar. (PS this first doc was the one I discussed my theories about smoking and he agreed about a switch in our DNA to turn on for cancer) He was a research physician from the University of Florida in Gainesville, who was in the process of doing that research, and so we spoke and sadly I said where I lived and that it would be too long a commute, nearly six hours away. But I did tell him that in that year of 2002 that I found my exercising to be quite beneficial for my Fibro and it appears to kick in those endorphins and until a doctor examines me I now forget that I have Fibro!

He liked what I said and he wished that I lived closer to Gainesville to be a part of his research.

On the program today, Dr. Oz, it made me sad that it is now first being recognized as a legitimate illness by them validating it in the vast medical community!

Gosh, all those people who suffered unnecessarily! Feeling as if they were hypochondriacs! I was lucky; at least no one accused me.

Although, it was still disturbing that not much in treatment had changed, and so I did not learn anything I can use. I really wanted to ask a question on his site. And one time I went there to get help for all my too many meds I am on, but they never ask why I was prescribed them and thought I was a drug addict and recommended rehabs! For all those prescribed non-narcotic drugs! Damn computers, no humans in them I wonder many a time!

Oddly enough my Fibro has been overshadowed by so many other ills of these last few years, who knows what is what from anymore!

I have MS, hypothyroid, cervical stenosis, seven types of arthritis including Fibro which is still classified as one of the more than one hundred different types of arthritis to learn more go to www.arthritis.org, although now neuros also can dx it, wow that is something!

Boy, the easier the dx is with that aha moment of knowing now what to do or not… and the more you know, at times the more confusing it gets…

But worth the investigation and so we who need to know plod on, and on, and on…

So on that never ending journey that can be different but for most all of us, allow me to be the very first to wish all of you a very happy good night and ask you to kindly count all your blessings and share those overages with you know who and we will too!

And next time please be here or be square, ya hear!