My letter to lupus and all things autoimmune

May is Lupus Awareness MonthWhat better time than now to let lupus know what I think of it, so I decided to write a letter to lupus, telling it that you’re no longer welcome in my body. My experience with you began when I was 19 and I was diagnosed with Sjogren’s Syndrome, another autoimmune disease. It was only a bother when I was young, dry eyes, and infectious parotitis. But then, Sjogrens‘s began affecting my life.

Idiopathic Thrombocytic Purpura (commonly known as ITP) was diagnosed with a painful bone marrow biopsy and shortly thereafter, I was told that I couldn’t have children, I was told that you were the reason I suffered the greatest loss of my life, not being able to have children. I’m told that you orchestrated an attack on my ovaries and Premature Ovarian Failure was the reason my husband and I would remain childless. A family was my dream!

Then more asymptomatic and quiescent years. Then, what I thought was the flu with a high temp (106 degrees should have clued me in!) turned into treatment with high dose IV steroids for an allergic reaction to a medication. Two years later, you were diagnosed and shortly thereafter came the diagnosis of osteonecrosis (ON). So many theories abound about the etiology of ON. Lupus, in your ravaging of my body, you also orchestrated antiphospholipid syndrome

You’ve altered my life, robbed me of my late 40s, all 50s and I’ll be darned if I let you rob me of all my 60s. I’ve been told that now, lupus has given way to Sjogren’s Syndrome as my primary diagnosis. This ‘morphing’ from one autoimmune disease is not uncommon. But, the damage from lupus has been done. I have ostoenecrosis (ON) in most joints and I have had a knee, a shoulder and an ankle replaced.

The crowning blow and icing on the cake was that the autoimmunity gave me this thing called ‘Shrinking Lung Syndrome.’ I get short of breath with the least bit of exertion. My doc and I have thrown every med and and treatment at it, to no avail. For years, the ON in my ankles was so painful that as the years went by, I walked less and less and and eventually, I only rarely left the chair because of the tremendous pain from ON and shortness of breath. But, part of the problem seems to have been solved by an ankle replacement. I’m undergoing rigorous physical therapy, but I have a good 8-10 years to make up for, and that doesn’t happen overnight.

Not only have you robbed me of a good 30 years of life, participation in that life, children and caused undue pain; but the life of my husband has been changed. He has been with me through all the hospital and ER visits and driving me when necessary. We filed bankruptcy protection today. Not only are we indigent because of high medical costs, but our future is uncertain. Lupus and Sjogren’s, did you think about the impact on my life and so many other lives, when you entered out bodies? Well, you’re an unwanted guest: GET OUT OF HERE!

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