Sonya absolutely nails how it feels to have lupus and what it's like dealing with doctors. I am enjoying this book immensely. Reading it makes me feel like I have a special friend who truly GETS me!
Lupus seems to be one freaking dead END. WHY? I have come to
the conclusion that there are probably a handful of doctors and scientists that
really know what they are dealing with when it comes to SLE. Lupus... its a
complicated systemic mess of a disease and I’m tired of it. It seems that no
matter which direction I turn in, there seems to be no way out. My doctor can’t
move without my rheumy. My rheumy, albeit more knowledgeable, just has a
handful of in his arsenal when it comes to Lupus. There seems to be NO
breakthroughs (Don’t talk to me about Benlysta please) NO reassurances. NO
answers.
The people WHO DO treat Lupus seem to have this expert chip
on their shoulders. THEY are RIGHT and YOU are wrong. It doesn’t seem to
matter. Chest pain? Indigestion of course. Stomach pain... in NO way related to
your lupus. More joint pain? Your blood work looks fabulous so go workout or
something. Call me when your kidneys fail. It creates this paranoia inside you
that any minute now, SOMETHING is going to go wrong and boy when it hits,
you’ll REALLY be in some trouble! It makes you live in constant fear of the
NEXT flare. No one can predict what is going to happen.
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