Blessings and Other Insomnic Ramblings- Day +136

Deep down inside, I always thought I was lazy.  Everything exhausted me and I had no desire to do anything.   I would overwork myself and blame all my pain and screaming symptoms on stress.  Well, I am still recovering and I still get exhausted, but suddenly I have the desire to do things.  I can stay outside in the 100 degree heat and not lose my vision.  I can walk unassisted and I can go months without having excruciating pain in my eye. I can feel my limbs and even can tell when my feet are hot or cold.  I have said this many times before, but I never really cried when I was diagnosed with MS.  I never felt sorry for myself and I never doubted medication would work for me.   Well,  it didn’t and because of my many medication failures that seemed life ending at the time, I found life again. Now, nearly 5 months post transplant, I want to cry tears of joy.  I have my life again and that is because I was given the gift that millions of people in my situation don’t have access to.  I was blessed once again in my 39 years of life, this time with the chance to have HSCT before my disease progressed to the point that it would be too late for me.  You see, HSCT will most likely be given FDA clearance in 10 years.  That is how long it will take once this 3rd phase trial is officially ended. At the rate I was going, that would be too late for me.   Not a day goes by that I don’t recognize the magnitude of this blessing.  I am still exhausted, in pain and recovering, but I feel like the old me again and I forgot what that felt for.

As September 11th approaches, I reflect on life as I do every year.   I have always taken the “Pollyanna” view on my life… as unique as it is.  I lost the love of my life nearly 14 years ago on that horrible day, but I was so blessed to have him in my life, even for the short time I did. I was given the two best parents I could ever ask for and a plethora of generous, funny, loving and supportive friends.  I was blessed with the addition of another amazing family to add to the one I already have.   My biggest blessing was and always will be my Rosemary.  Not a day goes by that I don’t thank God she was brought into our lives.   She is the one thing that can cheer us all up on even the darkest of days (or weeks). 

 She also gives amazing makeovers!



I am still trying to find a reason to consider insomnia a blessing…. Time to blog I guess.  Lol

 I have been running through life in the last 14 years knowing I have been given these hurdles and gifts for a reason. It hasn’t been until recently that I discovered that purpose to help others get the gift of HSCT. It brings me so much joy everytime I get a text, call, do a consultation or just talk to others in the position I was in. Spreading the news that there is a REAL hope for all of us that were told a normal future was probably not going to be a reality is an amazing position to be in and I am always happy to spread the word of HSCT. 

I began working remotely again in July.  I am on a reduced schedule, but it is so nice to be back with my work family.  It is hard and in hindsight, I rushed it… But thanks to an amazing leadership and execution team I have been able to slowly get back into things. Most of all, thanks to Cecilia.  She is my rock and one of the greatest people I know.   

As most of you know, I have been battling some stomach issues and have been getting tested nearly weekly to see what the cause is.  Well,  thanks to Dr. Uncle Dan, I discovered it was the antiviral pills I am on to prevent shingles.  This never crossed my mind  since I have been on them for 5 months, but apparently my body developed a strong dislike for them.  I have to be on them for a year, so I am anxiously awaiting another option along with a note allowing me to return to the office.  Because of my spanking new immune system, it will be a while longer before I am able to be in crowds, go to meet the teacher at a normal hour or take my daughter to the doctors. But every day that passes I remember that it is temporary and if I didn’t have HSCT, that would have been my permanent reality.
I guess what I am trying to say in my lack of sleep, all over he place way  is that for the first time in a long while, I feel I have a purpose.  This to me means that HSCT fixed not only my physical body, but my emotional one as well.  My wish is that everyone that is battling an autoimmune disease like, MS, Lupus, Devics, CIPD and many more… Find their way to HSCT while they still can.  If I have even a small part in making that happen, I have fulfilled my purpose.



It’s officially 24 hours since I woke up.   My next hurdle is to fix my insomnia,  lol



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