Sorry if I sound like a broken record

In order to report my experiences for the last week, I could easily refer you to one of my previous posts.  In the one from January 3rd, I talk about the ups and downs I was experiencing in the month following my December 2nd treatment.  I am having a similar experience this time.  Some days are exceptional, like today.  My balance and walking are stellar, and I feel mentally sharp as a tack.  Other days are tough like yesterday.  My legs felt weak and my balance was not as good as it has been for the past week.

I am getting really good at just coasting through the tough days, and not spending too much time worrying about them.  This strategy is made infinitely easier because bad days are usually followed by good ones.  When I have too many bad days in a row, that is when I know it is time to start keeping more detailed notes in my journal.

I am looking forward to strutting my stuff for Dr. Haskal at my follow up appointment on June 3rd.  Between now and then I will be working to rebuild muscles that have weakened, and paying close attention to how my body handles the 90 degree weather we are expecting this week.  I have not been particularly impressed by my ability to tolerate heat any better than usual after Liberation.  For years I have gotten tired and my legs get weaker when the mercury rises much above 80 degrees.  Maybe this summer will be different. Or maybe the large amount of permanent damage done to my nerves over all of these years will just mean that heat is my permanent nemesis.  So be it.  This is why some brilliant individual invented air conditioning.  I am planning on taking full advantage of mine this summer, thank you very much!

I am holding on to the five remaining PT appointments that I have left for the year.  It is too early to use them up when I can do a decent job rebuilding by myself.  I am very excited to be meeting with a personal trainer tomorrow, though!  She has a special interest in working with people with neuromuscular diseases.  When I told my 11 year old daughter this she said, "But Mom you don't have a neurological disease, you have a vascular disease!"

So young and SO wise!  I explained that while my primary diagnosis may in fact be vascular CCSVI, my symptoms are due to neurological damage caused by 20+ years of blood refluxing back into my poor brain.  For that reason I am looking forward to meeting a trainer who understands the needs of someone like me.

This trainer is one of the many impressive people on the board of a wonderful organization called "dreamMakerS."  It can be found at www.msdreammakers.org, and here on Facebook.  The group is dedicated to offering fun activities, support, and camaraderie for children in my area whose parents have MS.  It was founded by an energetic 4th grade teacher who grew up with a dad with MS. She certainly has her finger on the pulse of kids like mine.  I am proud to support such a fantastic organization.  Check them out!