Thursday, May 14, 2009

As if LUPUS Wasn't Enough

I have felt pretty sickly all of my life and people seemed to get tired of hearing about it. It was always one thing or another. I had the usual childhood illnesses, but seemed to struggle the most with kidney infections, bronchitis, and pneumonia. Once when I was a child my fever reached 107 degrees for quite some time. Time went along and I would continue to struggle with chronic infections, liver inflammation, and so on. In 1994 is when some of the symptoms of my up and down illness truly began to show. There was a point in 1996 that I thought my illness was beyond a regular hypochondriac as I began to feel that I was quite sick and people would make jokes to that affect. The jokes weren't funny and only made me question myself to the point that I would only go to the doctor and end up in the hospital, because I waited too long to seek medical attention. I waited because I didn't want my friends and family to know that yet again I had another problem. At one point I asked my long-term physician if he was going to get tired of seeing me and if he thought I was just a hypochondriac. His answer surprised me and reassured me, and gave me the reassurance that I so desperately needed, he said "you know PoCo JO, I would have thought that ,but you always truly have something medically wrong with you". That comment hurt but helped me because he reassured that there was something deeper wrong. So, the years would pass and I would go up and down , in and out of hospitals, to and from the doctors, and in and out of labs. The worst of all was the mental health care and diagnosis that I received in 1999. I was diagnosed with Bi-Polar Disorder. This didn't explain my physical illnesses and it took many years to accept the diagnosis. I went on and off of so many medications that I stopped counting and nothing worked. Just as I began to come out to everyone, family, home, my employer, and colleagues that I had Bi-Polar Disorder only to explain why I had recently missed another three months of work with the hope that they would understand why I was not being dependable with my attendance. Years of medicine took its toll on me and still didn't explain all my other illnesses. Finally in March of '08 my physical symptoms of chronic pain, fatigue, joint swelling, rashes, memory loss, insomnia, etc. made it impossible for me to continue to do the job that I worked so hard to do; In June '09, I received the call that I had Lupus but they needed to do further testing to determine which type. I was relieved to hear that it was Lupus because they initially thought it was MS. I knew what MS was, but had no idea what Lupus was. I was so wrong to have a false sense of security that the Lupus diagnosis was somehow better. From June through November, I had more than 40 doctor appointments, biopsy, too many blood tests, and too many urine tests to even count. It turns out that I not only have Lupus Erythematosus, but I have many disorders and diseases that a small percentage of Lupus patients end up having. The biggest hit and the hardest to accept is that my Bi-Polar disorder diagnosed many years ago could have been a symptom of Lupus and that the up's and down's could have been brain swelling from the inflammation caused by Lupus. This knocked me for a loop. In the meantime I still see my Psychiatrist for Bi-Polar and work with many doctors on my primary disease of Lupus and my overlapping illnesses. I realized that I have not shared with you the diseases I am trying to coordinate and somehow keep in concert with one another and I am not musical.
DIAGNOSIS: Systemic Lupus Erythematosus (lupus, SLE); Fibromyalgia; Peripheral Neuropathy; Sjogren's Syndrome; Chronic Autoimmune Urticaria; Chronic Bursitis both hips; Migraines; Bi-Polar Disorder
As it is explained to me Lupus (SLE) is my primary disease and the others are termed as overlapping diseases caused or aggravated by the Lupus. I am going through the normal steps of loss, denial, acceptance, blah blah blah. Really I am just taking it as I can, sometimes not so good and sometimes pretty darn good. I will continue to learn and deal with each of these illnesses the best that I can. After all that is all I have control of. I can't express enough how much having a strong supporter/advocate has been to me. If it weren't for my husband and three beautiful daughters faith in me and complete support, I would not be here today.
Click to Link to: Lupus and Overlap Diseases

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