Thursday, December 13, 2018 - 100%

This post is a difficult one.  On one hand, I am completely healed.  My other hand is madly knocking on wood.  I have literally zero symptoms of TSW.  My skin is the best it has ever been.  It could be my imagination, but I feel like my skin has "toughened up" and got thicker, especially on my hands.  If I were to do some project before, such as woodworking, my hands would pay a price, and typically crack or at least break out.  Now: nothing.


I still have allergies, and with the exception of some crazy temporary allergies during the bad parts of TSW, they are not caused by TSW so they will remain with me.  I will still need to avoid known allergens, such as propylene glycol, preservatives, and Poof Ball, our Persian cat, as I can still get contact dermatitis.


I am having tendonitis issues in my arms, and that may be a lasting side-effect of life-long topical steroid use, I don't know, but it may just be because I am almost 64 after all.


The hard part about this post is that my selfish joy is tempered by Robin's battle with muscular dystrophy.  We found out Robin has MD a few years ago, but it took a long time for the docs to give her a final diagnosis.  It turns out it is a rare form of MD called IBM, for "Inclusion Body Myositis", an incurable degenerative muscle disease that is affecting her legs, arms, hands, and ability to swallow.  We have been feeling the disease is progressing extremely slowly, as she can still walk fine without assistance and is still able to volunteer full time for the NICU Angel Gown Program.  Also, our new single story home has been great for her, as she has increasing difficulty with stairs.  The issue we are most dealing with at this time is her stamina.  After what you and I would consider normal activity, she gets very tired very quickly.  Robin has been incredibly strong about this whole experience, with a stoic attitude of simply playing the hand she's been dealt the best she can, but damn, this aspect of IBM has hit her hard.  She will probably get mad at me for making this post, but one reason I am is that I feel that those that know and love Robin personally need to be aware of her limitations, as she would never be the one to tell anyone about it, and certainly the very last to complain.


I intend to continue this blog, perhaps with a shift in focus from me to Robin.  This blog was started simply as a personal diary so I can look back at what was, but I have been told that it has been a help to others going through the TSW ordeal.  Perhaps it can be a help to those with IBM as well.  In any case, it can continue to be not just my diary, but our diary about a strong and beautiful woman tackling a life changing challenge with wisdom, beauty, grace, and dignity.


With that in mind, I have made a (hopefully) final version of my infamous graph that shows (mostly symbolically) what I went through.  I am not kidding myself here, as I fully expect to go through at least another flare, but based on how minor the last flare was, I fully believe that TSW will no longer have a significant impact on my life.