Thanksgiving and More...

Our family decided that we would celebrate Thanksgiving at our house this year as my parents planned to stay in Florida through the rest of the holiday season.  I think my trip to Florida was my last true independent move.  My legs/arms/muscles were weakening and the energy I had to exert to do anything normal was becoming exhausting for me.  Tony got us two turkeys and all the fixings as we said we would do that but my mom/dad/sister would have to cook.  My parents had not yet seen me since July (early symptoms) so they were somewhat nervous.  Well, my dad was a great distraction because on their way up from Florida he tripped at a gas pump and broke his nose (thanks but sorry. dad)!  At this point, I was still able to walk with cane, furniture and walls...but not well and not long.  It was wonderful to have my mom/dad and sister and her family.  Know me at all?  Know I'm a bit of a control freak.  So...I "bossed" around everyone...brine the turkey, peel the potatoes, roll the pie crust...yikes!  The best was my mother complaining that my father was slow chopping the onions and they were too small...and...digging in all my "things"!  I had to wobble back to my new tv room (thank you, Anthony for allowing me to dismantle your bedroom!) as I could not stand it one more second...just call me when it is ready!  Thanksgiving was great but I knew that I was getting worse and I mark this as a turning point.

December 8th.  WOW!!!  I truly have the very best friends in the world.  Cindy, Joan, Janis and Liz (Joni was sick) cooked a wonderful dinner for us AND decorated our tree, table and mantle.  We laughed, ate and I was so, so touched.  I am not sure what we would do without our family and friends!!!


Tony and I pretty much had settled on my diagnosis being changed to CIDP.  I met all of the criteria and our discussion at our last visit to Dr. Arce leaned in that direction.  Yes, we asked many questions...we made a list each visit of our questions and those of all who had their own.  Once diagnosed, treatment for GBS/CIDP is relatively black and white.  Because the demyelination is so varied person by person there is no standard timing/scheduling of IVig nor of recovery. Difficult for the patient to accept and the neurologist to treat.  Our visit to Dr. Arce on December 9th was tough but expected.  He, without tests, was fairly sure of the CIDP diagnosis.  He scheduled me for another spinal tap (aaaaggghh) and a second opinion at Cleveland Clinic.  The next, and somewhat final treatment, would be steroids.  Dr. Arce wanted to try to avoid this as it would be long-term steroid use with many risks.  Spinal tap scheduled for Dec. 15th and Cleveland Dec 30th.  Another story for another day...