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!

Friday, February 24, 2006

Better Late than Never!

Writing has always come naturally to me. Since the 7th grade...Mrs. Firmender's English class...I was told how well I used the English language on paper. Little did I know that I would write for a living!

It's strange, though, that it has taken me over a year and a half to start a blog. I began writing notes on pieces of paper, but that didn't last too long. This is more permanent, plus I can share my experiences with others.

You see, I am very ill. Two doctors told me I have Mixed Connective Tissue Disease (MCTD). It is an autoimmune process with symptoms of Scleroderma, Myositis, Systemic Lupus Erythematosus , Rheumatoid Arthritis and/or other autoimmune diseases. It is a description of a group of symptoms occurring together. This is different from a diagnosis that describes the underlying process.

MCTD is a disorder of the immune system, which normally functions to protect the body against invading infections and cancers and toxins. In Mixed Connective Tissue Disease, as in other autoimmune diseases, parts of the complex immune system is over-active and produces increased amounts of abnormal antibodies that attack the patient's own organs.

MCTD can affect many parts of the body, including the joints, skin, kidneys, lungs, heart, endocrine, digestive and nervous systems, and blood vessels which all are made up of connective tissue. There are reports of psychiatric disturbances, and the signs and symptoms of MCTD differ from person to person, with the symptoms of either Lupus, or Scleroderma, or Myositis or other autoimmune disease being most prevalent.

The disease can range from mild to life threatening. The lungs and kidneys are particularly at risk. It is estimated to attack women eight to fifteen times more frequently than it attacks men. So, it is primarily a woman's disease, as are most of the 80 or so autoimmune diseases. Figures, right?

Sounds scarey, huh? You bet. My emotions run from anger to sadness to wanting to be the first one to beat this thing.

I want to start this blog from the beginning...from when I first knew something was wrong. But it will have to be done from memory. Please bear with me as we begin the journey together.