I Wonder

It's October and October is Lupus Awareness Month.  How many people do you know who are actually aware of what Lupus actually is? Most people have no idea of what Lupus is.  And, if they know they think its some form of arthritis that a motrin or an asprin can cure.  They have no idea what it actually is.   I started to write stuff about Lupus a few months ago but my mind became so confused I  had to stop.  It became difficult for me to continue to do it.  You see "My Lupus" affects my brain.  It's called Lupus Celebritis.  That along with the Antiphisiploid Syndrome (APS) screws me up.  My new rheumi doesn't really know what is happening with me.  He hasn't yet seen me with the criteria to diagnose me with Lupus.  Oh, he has seen the mess my brain is in just by looking at my MRI.  And it's worse each time I have a new MRI. (Time to send for the illegible records from my old rheumi. Let him try to make heads or tails out of them.) My PCP understands my concerns and has seen me at my worst.  He has seen my rashes (facial and body), my nasal and oral sores, joint pain, sensitivity to the sun, flouresant lights, and of course as everyone knows my seizures, and protein in my urine, etc.  We spoke about this on Friday.  Both of them agree that someone with a positive APS may take years if ever to get a positive ANA.  I am caught in limbo.  They keep on increasing my meds.  My seizure meds, pain meds, etc.  Does the rheumi realize that ever since he took me off the CellCept these changes in my health have been occuring.  Yes, the CellCept has made me anemic and given me a mild case of asthma.  But there has to be something else to help me.  When I asked him about it, his response was I haven't seen you with the necessary diagnostic criteria.  Here I am at square one again.  I really do like him.  He is open and honest.  More professional than my last rheumi.  More approachable.  Maybe once he gets my records and/or speaks to my PCP something will be done.  But for now I am so very tired.  The increase in my seizure meds and the stupid increase in my prozac makde me tired.  They tell me that these things will help.  What would happen if I just went off everything completely?  I wonder, could I feel worse than I did before I crashed?