Tuesday, February 28, 2006

Only The Facts, Ma'am!

The cause of my disease is unclear. Researchers suspect viruses might trigger the misdirected immune response. No one has an answer at this point. It is poorly understood, and since it is rare, it is difficult to obtain subjects or money to support medical studies.

Most people have subtle signs and symptoms of the disease many years before ever getting a diagnosis. Symptoms vary, and each person's illness can be quite different. I always had stomach issues and had frequent bouts with colds, etc. But the extreme symptoms were obvious to me...fatigue, muscle pain/spasms, brain fog...just to name a few.

The body's immune system is attacking organs in the body as if it were an intruding source. Intruding sources could be an infection, cancer, bacteria, virus, mycoplasma or environmental factor.

It is not likely there will be a cure until the cause of this disease is identified.

I went to over a dozen specialists with the conclusion that the illness was all in my head. I found out that many patients are told they are depressed and put on anti-depressants. Sure...the pharmaceutical companies need to stay in business, right? Pleeeeze....

After going out on FMLA and short term disability from my director's position at a hospital, I received a letter stating that they terminated me because I was too sick to return to work. Nice, huh? NOT! But in New York, they can terminate your position if you are unable to return at full capacity.

I was denied long term disability from this same hospital. Reason, I was not "sick enough!" Sure...kick a woman when she's down. No job, no income, no insurance. And I am not supposed to have any stress! Yeah, right! So I had to hire an attorney (of course with a huge retainer) to fight for what is rightfully mine.

Despite being 50 pounds overweight from the medications, I am still the same person inside. I may walk with a cane, be pushed in a wheelchair, act confused or sad at times, and appear obese. Just remember, I am a human being. I have feelings...I laugh, I cry and I want to be loved like everyone else.

The fact is that I am limited right now in many ways. Chronic illness forces an independent person like myself to rely on others. I no longer take anything or anyone for granted. Things could be worse. So, I celebrate and thank God for each day that I wake. And I promise that I will try to live my life one day at a time...to the fullest. Amen!


Anonymous Anonymous said...

Finally had a chance to check out your blog. I think I am starting to understand your illness even better now.
I am looking forward to reading more of your posts. This can only help you and so many others.
You have been an inspiration to Karen and I. :o)


10:15 AM  
Blogger Zanna said...

Bev, I am so glad you started a blog. It is quite empowering. I too, know too well what it feels like to be told 'it'a all in your head'. After awhile it does make you feel crazy. Now, with a diagnosis you can move forward. Your faith and attitude are strong and positive. You will be just fine! A myo friend,

5:53 PM  

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