angel3

Sometimes the angels are smiling on you

Hi guys, I know it’s bee a couple days.  There has been so much going on in my life, mostly medical things.  As promised, I will fill you in now.  If you haven’t been following this blog I have a disease called C.I.D.P. and in the worst case scenario the illness would cause me to lose all of my peripheral abilities, hands and feet most immediately.  I have had 6 non-invasive spinal surgeries in an attempt to relieve my pain so we could move on to treatment of the root of the problem which is the deterioration of my myelin sheath, protecting my nerves.  We had been hopeful that the last surgery would give me relief from pain.  It did NOT.  At my last consult with Doctors a miracle occurred. It turns out there are forces at play here that even the Doctors do not understand.  As I arrived my Doctor informed me that he had read my blog and that he was referred to it by an acquaintance. The word of the rarity of my case had spread around the surgical center where I am being treated.  One the administrators had heard about my case and consulted with a few other doctors about it.  Well, one thing lead to another and by the time I arrived at my meeting on Monday, they had assembled a team of Doctors that will be involved in my case. One of them is Doctor of Note.  He will be instrumental in my upcoming implant of a “Spinal Cord Stimulator” which will be monitored by St. Judes hospital staff.  This is significant for a few reasons.  First, the cost of the surgery ($20,000) will be completely covered.  Also, any new advances in technology will be automatically applied to my stimulator and will be updated for free, for the rest of my life.  You don’t understand what a coup this is for me.  Not only will the “Stimulator” bring me a significant reduction in pain (thank God) but will allow me to move forward with a biopsy I need to be sent to the Mayo Clinic in New York where my Myelin Sheath will tended to, but it will allow me to work with physiology team to help me with my balance issues.  Physio-therapy if you will.  Although I have been loathe to go through with this Major surgery my attitude was completely changed when during my Doctor visit a representative from St. Judes was there to explain the ins and outs of the surgery which she did so well that my fears have been put to rest.  Not only is this piece of equipment State-of-the-Art but it is MUCH smaller than anticipated and it’s not the one I initially was led to believe would be implanted onto my spine but a much better version to be implanted by one of the best Neuro-surgeons in the country.  A team will be in the O.R. at the time because of the interest in my case.  There will be a representative from St. Judes present for the surgery as well, to document the occasion.  You guys will not believe this thing, it’s like something right out of Star-trek.  With the push of a button, on a hand- held key pad, I will be able to send electronic pain relief to any part of my lower body.  Of course we are focusing the area below my knees which means attaching the electrodes to my spine a little lower than normally attached.  All of that is a miracle all by itself, but that’s not all of it.  There is a 4-6 week recovery period for this surgical implant with infection and effective scarring needed to hold the implant in place.  So, during that time I will work (carefully of course) with therapists in physiology to help me learn to walk without a cane or walker.  Wow!!..did you hear that, I can’t believe I’m saying these words.  If everything goes as planned, there is a possibility that within 2-3 months I could be walking around, under my own power, without any assistance.  When we first learned the exact diagnosis of my disease we ALL thought that I would eventually be in a wheelchair with no hope of ever walking again without some kind of help.  Apparently the Gods had another plan in mind!!   Yessssss!!  (thank you God)  There are so many other details I would like to impart but my Doctor was careful to help me understand that I should NOT get ahead of myself with the excitement of these new possibilities because there are several other steps with this process, but I AM excited and I just can’t help it!!  Anyway, my first hurdle is tomorrow at 5pm where I have to meet a Psychologist and undergo an hour and half long evaluation to determine whether or not I can handle this whole process mentally.  If I don’t pass the evaluation then my hopes are dashed, but both my Doctors and my instincts are telling me that I WILL be approved for the surgery.  YAY!!  What, just a few weeks ago, was a dreaded notion has turned into blessings from Gods heavens……..I can’t tell you everything else (just yet) but suffice it to say,  I am beside myself with feelings of Joy I cannot convey without the use of my ability to dance around like crazy person. (LOL, fingers crossed)………I am so thankful to God for this miracle that as I sat on my roof top deck on Monday afternoon tears streamed down my face, but not once did I sob or frown……they were my first complete set of “Tears of JOY”…….Miracles are working in my life today as never before and the reason is simple..New LOVE in my life, FAITH, and GOD………my version of the Holy Trinity………My hugs-n-kisses go out to the world this day………I am on my my knees with thankful happiness……….I am Dartanion2……….and that’s the way I see it!!………..love to you all………T  xx