Unstoppable

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

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

You know you have drebilitating fatigue when:

• You choose to wear yesterday’s clothes because they passed the sniff test and you can’t possibly add another item to your laundry. If you did that you’d have to carry it, wash it, dry it, and put it away. It’s all too much.
• Your arms feel disconnected and heavy as if they belong to someone other than yourself and your legs, you’re quite certain, have been glued to the floor.
• You once loved to read but now the hardback books have become too heavy and paperback books have to be held open. It’s all too much to bear. You find yourself lying in front of the TV, mindlessly changing channels.
• When you try to read for an extended period of time, your eyelids develop a confounding weight and close when you least expect it. They close like broken garage doors as they slam shut despite your best efforts to hold them open.
• When you awaken each morning you do a double take when looking at your clock. It couldn’t possibly be that late, could it? You lie there and put yourself through a period of orientation. What day is it? What was I going to do today? Am I supposed to be anywhere right now? Can I go one more day without taking a bath.
• As the day progresses you feel like you’re slogging through deep sand.
• If you’re at work you sit at your desk staring into space, miss meetings, and discover you don’t care.
• When dinner arrives and you finally manage to cook it, or even order it at a restaurant you stare at your entrée. You realize you don’t feel like cutting up your steak, chop or anything else that requires a knife. Then, worse yet, you decide you not only cannot cut it but you wish someone else would chew your food for you. You want your mother to reappear and put butter on your bread. You finally take a bite or two then shove it aside, uncaring, unfulfilled.
• Certain foods like popcorn become too much trouble to get to your mouth and chew. You find all that cheerful crunch too irritating and artichokes, corn on the cob, and salads become far too much trouble due to all that picking and chewing. They are far too much work for so little reward.

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