Thursday, December 13, 2018

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.

Tuesday, September 11, 2018

Tuesday, September 11, 2018 - Feeling Great!

First, always remember those that lost their lives 17 years ago today.  Our lives have never been the same and what was intended to tear us apart has made us stronger.

Secondly, I feel so good!  I am back to pre-flare condition, which means I am at 99% healed.  Honestly, I will probably never make it to 100%, and I'm okay with that.  There's some persistent rash and itching primarily on my right hand, likely due to contact dermatitis.  My next step is to start doing the UVB light box again in hopes that will take things the rest of the way.

Not only was this flare the shortest yet by far, this is the first time a flare has not affected my feet.  They were happy campers the whole time.  Actually, I was a happy camper the whole time as it was also the first flare that did not affect my everyday activity.  My daughters visited from LA and Australia and we had a great time!  Yay!

Normalcy will never be normal to me again.

Monday, June 11, 2018

Sunday, June 10, 2018 - Yep, Another Flare

I'm approaching my 5 year anniversary and I've been hanging on to feeling good and enjoying it every day but I have had a nagging feeling that another flare was going to happen.  Maybe because of the heat, I dunno, but every year right about now it has happened, and it is happening again.  Damn it.

It's a little different this time in that it came on quickly.  In just a couple days the hands got significantly worse, the neck broke out, the creepy crawly feelings are back, and I am having trouble sleeping.  Nothing terrible yet, so I am hoping that it will be mild and short lived.

I was really hoping to take Robin to Disneyland this August and I am still making plans, TSW be damned.  My daughter is a photographer at Disneyland and the last time I was there was about 6 years ago with her and her twin sister.  Robin has never been to a Disney anything, and I am hoping she will love it as much as I have virtually my entire life.  It will be especially sweet because my other twin daughter will be visiting from Australia.

While there, I am tempted to make an appointment with Dr. Rapaport, the Beverly Hills dermatologist who pioneered Topical Steroid Withdrawal, just to give him a hug.  It was his work at UCLA that shed light on Red Skin Syndrome and made millions aware of the dangers of topical steroids.  He co-founded ITSAN, the organization that helped me so much through the bad times.  Dr. Rapaport and ITSAN have unfortunately parted ways, but I still love them both.

Saturday, March 31, 2018

Saturday, March 31, 2018 - Still Feeling Good!

I haven't updated in a while, so I thought I'd pop in and say I am doing great! 99% healed and I think that is as far as I'll get. I still have allergies, after all, so I deal with contact dermatitis. I use safflower oil when needed on hands and feet and if there's an itch I still keep Allegra anti-itch cream on hand, although I hate to use any commercial products. I suspect another flare is on the way, as they always show up when the weather warms up.

As I mentioned last post, the areas that are persistent, namely my hands and the tops of my feet, may never heal because way back in the 60's when I was about 10 years old I recall having radiation treatment done on them to treat my eczema.  Not sure how many times this was done.  My primary memory is having a very heavy lead shield placed over my body and the nurse leaving the room before I was zapped.   I have never heard of any one else that has had this done.  I try not to worry about what this did to my body.  Between this and being a "downwinder" I suspect I know my final fate.  In the meantime, I will enjoy life as much as I can.

That reminds me, one thing that has helped me lately is a bit of a philosophy adoption.  My son-in-law from Australia has taken up "Stoicism" which may be the worst name ever given to a philosophy.  It implies being "meh" about everything, but is actually quite the opposite.  One of the main ideas is to accept the things that you cannot control, such as going through TSW, and not let them ruin your life.  Take on each day as if your life is brand new and do what will make you the best person you can be.  To learn more, look up on Facebook or   One thing I like about it is that it does not rely on religion.  Those that know me personally know why that's important to me.  No worries, I won't get into it on this blog.  Haha!

Hugs from Texas!

Wednesday, November 8, 2017

Wednesday, November 8, 2017 - Feeling Good!

Wow, that flare was way worse, way longer, and took way longer to recover from than I was expecting.  I am not fully recovered, but I'd say I'm back to 95% and at a level I can live with permanently if that is in the cards.  I am thinking that maybe that may be case for me as I recall something I have not mentioned before.  When I was very young, likely like 10 or so, I had radiation treatments on my wrists and the top of my feet.  Well, guess what areas are the still giving me grief.

Also, as a very young child, before age six, I lived in Richland, Washington and am considered a "Downwinder"; those that were exposed to Iodine-131 releases from the Hanford nuclear reactors.  Iodine-131 settled on grasslands, was eaten by dairy cows, and ended up in the milk supply.  Iodine-131, when ingested, ends up in the thyroid gland and can damage it.  Several years ago I had half of my thyroid removed after a cancer scare.  It was benign, but what is left of my thyroid is toast and I take thyroid hormones daily.

I mention all this because it may help explain why my TSW is lasting so long for me and to give a little hope for long-term topical steroid users going through TSW.  Your recovery may be much quicker than mine.

No pictures, as I look terrible, but only because I am 62 years old.  Haha!  I am hoping to improve that with diet and exercise changes, especially since my last check-up indicated changes are needed.  Nothing serious, just a few indicators pushing limits.

Now if we can just survive our current presidency.  I don't like to get political on this blog, but I must give, especially to anyone reading this that is not from the US, an apology for our current, and hopefully short term, president.  Trump is an embarrassment to any rational free-thinking human being, and he does not deserve to be near my daughters, let alone to be the most powerful leader in the free world.  TSW is fueled by stress, and he is not helping one bit.

Hugs from Texas!

Sunday, September 3, 2017

Sunday, September 3, 2017 - Slow Improvement

A few months into this flare and I improving, although much slower than I hoped.  The ever-present insane itching of hands and feet are the primary adversary at this point, but my eyes and skin elsewhere have improved to the point where I am not ashamed to be seen in public.  I am no longer putting nitrile gloves on at night, nor am I taking hydroxyzene, although it seemed to make little if any difference anyway.  I never resorted to using Ambien again, although it was tempting to see what crazy stuff I would do.  Oh, and since I mentioned them before I feel obligated to report that the privates have mostly recovered and have reported back to duty.  Life is good.