Thursday, May 22, 2014

A quick update

I went back on the oral glutathione this past week.  All I can say is WOW!  It obviously was doing more for my healing than I had originally thought.  I had a bit of a healing reaction the first few days - sleeping massive amounts!  Like a 3 hour long nap in the middle of the day and then sleeping 10 hours at night.  Then the healing itch began!  It's not a bone deep itch, but I remember itching more on the glutathione - just an all over surface itch.  It has since diminished the last 2 days or so, but the first 3-4 days were crazy itchy days.  This makes me almost not want to go back to the IV glutathione.  I'm still riding the fence on that decision.  But oh the healing!!  It is so nice!!  I will be taking another picture of my right ankle in the next few days - the one ankle where healing has seemed to cease all together.  Now the sores are about 40-50% healed just in this week alone.  The rest of my areas are about 20% better in this one week.  I never had the cycles that some people experience with TSW - flares and then periods of calm almost normal skin.  My skin was always in a constant state of flaring from day 1.  Then when I started therapy for the gene mutation and moisturizer withdrawal, I had a rapid state of healing all over except in what I call my problem areas - the neck, forearms, ankles, and previously the left lower back.  All areas that cleared like my legs and upper arms and chest/back ave never experienced even a mini-flare since (that was October 2013 - over 7 months ago).  They have remained smooth and clear.  The problem areas have gone through cycles of what I call mini-flares - itching and irritated/broken skin.  The red sleeves, redness in general, edema, and pain all ended 7 months ago.  The oozing continued in very small amounts for about 4-5 months and have stopped all together for the past 2 months now I think.  The cycles of mini-flares are short - often lasting a few hours where I have intense itching and scratching causes the skin to open up.  I typically only flare in one or two small areas at a time.  Some times I have weeks between mini-flares, and sometimes I will have one every day for a week.  None of these mini-flares have made me put a stop to my life.  The wind, air temperature, and so forth no longer bother my skin and haven't since last October.  I also had severe body temperature irregulation.  I was constantly cold and would get frantically itchy if exposed to heat.  It was awful having to stay in a cool environment while feeling so cold....but warming up was 10 times worse.  Since this winter, I no longer have this problem.  I have enjoyed 80 degree days in the sun so far with no problems!  I'm not exactly sure when this ended - it was gradual.  I remember in the beginning of the winter we kept the house at 62-64 degrees - any warmer and I would itch so much more.  Then towards the end of winter 68 degrees was too cold for me!

So now I am enjoying life - so much better than even before TSW!  I go back to work full time next week - having given my hands a nice decent break from the harsh soaps at work.  My hands are still dry, but the pink areas that would not tan are now tanning - which to me is a sign of healing.  I only have a few pink areas left on a few fingers which I can easily wrap and work with.

I have done things this spring that I would not have dreamed of doing last year - like going to a parade, spending time outside working on the garden, and making impromptu trips across the country!  It is such a blessing to have no more pain and only slight discomfort (if that).  I am beyond thankful to all the bloggers out there on the subject of TSW as you spread the word about this condition.  If it weren't for Kline's mom, I would not be where I am today.  I am thankful to my ND for making me aware of my genetic problem which contributed heavily to my TSW.  I will continue to post updates in the next few months as I wrap up this healing.  And then I will move on like many others have in the past.  I would have loved to do a big study on the MTHFR gene mutation, but will leave that up to the NEA if they so choose.  I thank all of you for participating in the survey - of which I am submitting to the NEA for their review.  I will put up the same survey for any others coming by who have been tested.  My life took a severe beating due to TSW and now that I have it back, it is full and enriching.  I have so many other wonderful projects I am working on to help others.  I will be here for those that want to email me or comment on this blog.  The information is here for those seeking it out.  I now understand why so many of the people who have healed never returned to the forums or their blogs to update - at first I thought it was because it was a painful reminder.  But I don't see it that way - for all last year I did very little except focus on my pain and suffering.  Now that it's nearly all gone, I no longer feel a need to write so much.  It's just a natural transition - like when you've graduated from school - do you keep going back to the classrooms?  No, you move on.  You come back every 5 -10 years (maybe) for reunions.  You stay in contact with a few close friends.  But you move on.  It's a natural progression.  Some people feel inclined to stay around - become a teacher/professor or whatnot.  Just like some of the vets feel the need to stay around to help support  the new people going through this.  But it's not everyone's calling to stay around.  It's not everyone's calling to be a teacher or a nurse or a dentist.  We each have our own calling in life.  Sometimes the calling changes for some.  But not everyone going through TSW feels the need to stay around - I think many feel like I do that their blog is testimony enough and other things in life are more important.  This may come across as callous or insensitive to those in the worst of TSW at this moment, but I assure you it is not meant that way at all - it just explains why so many people never come back.  Some think it's because they have flared again and are too embarrassed at having declared themselves healed previously.  That may be the case for a few, but I think most are just getting on with life - going back to their loved ones and fulfilling their own personal callings.

Not sure why I wrote all I did - just came to me - so much a "quick" update!  :)

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