I had my yearly check up this past week and as it turns out I got the pleasure of seeing someone different.   I was explaining my multi-month flare ups to now going 170 + days without a single one.  The other regular, every day illness I encountered and still going strong.  She did mention that I looked tired and I cannot get a handle on this fatigue.  Even with the iron supplements and making sure I’m getting at least 8 hours
of good solid sleep by the middle of the day I’m exhausted.  Actually I wake up exhausted but I feel well rested enough to keep my morning routine since that is really when I feel my strongest. 

I’m glad she is amazed by my progress but I want more from her and my other doctors. I don’t
want to continue battling fatigue, I don’t want to continue taking prednisone and wearing down my already fragile immune system, I don’t want to keep adjusting my rings because the  tissue in my fingers are
swelling and damaging, and I don’t want to damage the tissues around my finger nails due to my Raynaud’s.  Granted some of this stuff is for me to do and a lot of it is research and coming up with new ideas and a new game plan each year. I’m missing the new game plan piece.  We are just “doing what we have always done” because obviously it isn’t hurting.  That gets frustrating for me. I want to be amazed by my doctors and their attentiveness to finding out research and putting me in touch with trials and other case studies.  I’m glad they are amazed by my hard work now I want to be amazed by theirs.


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