I can see my back and other miracles

I can see my back and other miracles

Staring in the mirror in the bathroom my husband says “Hey hon, what are you staring at?” “My back” I answer. But that’s not the real answer…. the real answer is I can see it.  I can stand in the bathroom, back to the mirror and turn my head far enough to actually see the reflection of my back in the mirror.  My whole back. The realization hits me slowly at first like something coming from a distance and slowly comes into focus as it approaches. I can turn my head. Full range of motion.

On day + 6 after transplant I had my only really down day.  It was the night I chased everyone out.  Would not let Rocky stay in the room over night.  I was laying there in bed, tears in my eyes thinking through some “stuff” that was things I could not change from my past, maybe even having a minor pity party when through the snot and tears I whistled.  The sound that escaped from my lips I had not heard in approximately a decade.  All of a sudden I realized I could whistle again.  Holy cow!  I started whistling there, alone in my hospital room until my lips went numb. You see the SCT (Stem Cell Transplant) softened up the skin around my mouth and changes were happening.  You may want to know I have been whistling since and that was my last night alone in there.

So much of my damage from Scleroderma was done internally on me.  My heart, lings and GI track were are deeply effected.  I know some of that damage will never reverse however some will over time.  My expectations going into all this is that I might see some improvement but this is unwritten.  Its not like there is a road map for this recovery.  I am one of the pioneers in this disease writing that road map. I am the google car driving up and down the roads taking the movie for other to have direction later.  It is a privilege and a true honor to be that person but holy cow the discoveries knock my socks off.

I drink slim fast in the mornings to grab a quick breakfast some of the time.  (I only like the vanilla but I totally love them!) and I am used to drinking this thick beverage.  I am used to having to take anywhere from 10 to 15 gulps to get one bottle of it down.  Yesterday, I grabbed a slim fast to drink my breakfast and as I am drinking I realize I am drank it in two parts.  Like, hold it to my lips, drink, gulp gulp, gulp. Set it down. Then finish it in the next group of gulps.  My throat has not had the mobility to move that thicker liquid down on while still drinking more.  It has clearly loosened and has more mobility.  Blown away over a slim fast.  Wow

Bottom left…..my pulse-ox. My favorite thing!

Finally, for my last revelation and probably the one I only let myself dream of my lung improvement.  When I first got sick 15 years ago I was prior to then a healthy, fit active woman.  I could do all sorts of things without effort.  This illness took my breath from me and over the years has left me increasingly breathless, pants and having to pause when speaking.  My normal pulse-ox went from 99-100 to 91-94 often in the low to mid 80’s when doing any activity.  When I went in the hospital in February it was because my pulse ox was stuck at 70-72.  I’m a tough chic but the brain need oxygen.  After the SCT my vital signs were taken regularly and now I feel the positive effects of my new pulse-ox.  I get to enjoy numbers back in the high 90’s and hitting 100 for the first time since 2004.

Being able to breath, without gasping, pausing, or having to sit or slow down…….priceless


From the whistling, to your neck mobility, to your vastly improved swallowing, to your perfect pulse ox – – – just WOW!
I am so excited for you and love to hear the excitement, gratitude, and wonder that eminate from your words and, of course, these discoveries.

Everytime I read your blog, I feel joy for you. You deserve everyone of these moments of gratitude!

As a mother of a sclero patient I am shedding tears of joy for you- I know what these victories mean, having watched my daughter struggle to breathe, move, and eat. It’s just a pure delight to see you regaining these beautiful gifts. Thank you so much for sharing, and God bless you as you make further discoveries!

These are true milestones and a miracle! I am beyond happy for the progress and am smiling through my own tears for you. 💕💕💕

Prayers your way for a fast recovery. If I may where did you have the transplant done? Would you share the cost?
Looking for miracles and you seen to be one! Bless you!

I had the procedure at Northwestern Medical in Chicago, IL. My main Scleroderma Doctor referred me and the wheels rolled from there. Cost was finally covered by my insurance, United Health Care after an appeal. Wishing you the very best with your journey.

Betsy its amazing how far you have come on this journey and how well you are doing I shed tears of joy for you this is the most hidious disease.

Betsy, I don’t know you and only know J.D. and Sara a little, but follow them on Facebook and heard of your disease and treatment. I was interested to understand the illness and treatment more and read this. I have tears in my eyes (I’m an emotional type) understanding your suffering and your improvement. I’m rooting for you!

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.