Saturday, May 22, 2010

Now that's a mouthful...

For many people with autoimmune disease we have more than one thing going on.  For me...I have Lupus…it is the main or primary disease I have.  But, you can have other things be secondary or overlap with ends up being a mouthful when you tell people.  

For me…it’s Rheumatoid Arthritis, Sjögren’s Syndrome, Raynaud’s Phenomenon, Celiac Sprue, fibromylagia, severe allergies (to food, medications, stinging insects, and environmental), asthma, hypothyroidism, and eczema.  Now that's a mouthful to tell a new doctor.  I even had one doctor tell me it was impossible...until I showed him on the internet that it was possible.  Needless to say, that was the only time I saw that "uneducated" moron. 

Other conditions you can have are multiple sclerosis, scleroderma, myasthenia gravis, psoriaritic arthritis, diabetes, Hashimoto's Thyroiditis, polymyalgia rheumatica, Crohn's disease, Ulcerative Colitis, irritable bowel disease, dermatomyositis, and many others.

You also get things like pericarditis, endocarditis, cardiovascular disease, strokes, glomerulonephritis, pleurisy, vasculitis, optic neuritis, peripheral neuropathy, psychosis, headaches, lesions, necrosis, etc. because your immune system targets those areas because of the lupus. Or you get things because the immune system has been suppressed too much...shingles, bell's palsy, ramsey hunt, infections, and even cancer.  Other issues to worry about are what the medications do to your body...they can destroy hormone  producing glands causing early menopause, or adrenal gland failure...they can damage your liver and cause cirrhosis...the meds can trigger osteoporosis or worse avascular necrosis...they can damage your kidneys much in the same way glomerulonephritis does triggering kidney failure if the damage is severe enough.

I have done enough research to be able to hold intelligent conversations with specialists and have them ask me what my medical degree is in.  It is important to educate yourself about your disease.  You must be your biggest advocate.  My rheumatologist, immunologist, neurologist, neuro-ophthalmologist, nephrologist, family doctor and therapist, all appreciate that I learn and understand about my disease, treatments, and research studies.  It makes it easier for me to understand what they want to do and why...they know that if I question something it’s not because I am scared but because I want the truth.  I have refused some treatments and medications because of what I have learned or experienced.  We work as a team.

Now that was a mouthful. 

(For an autoimmune disease glossary of terms…please go to

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