Thursday, April 14, 2016

The Realty of Healing from TSW

I have talked about this before - but need to revisit it given the increased number of people visiting my blog and the TSW support groups on Facebook.  So many more people are going through the suffering of TSW.  Many ask if this is worth it?  If all the pain and agony will some day end.  I have heard of people who are still going through hell 3 or 4 years into TSW with little relief.  I have heard of people going through 6 months of TSW and then heal without any further problems.  And then the ultimate question: why are there thousands of people using TS without any ill effect???  And yes those people are out there.  I have a distant cousin who uses a strong TS - clobe - something or other every winter for approximately 4-5 months and comes off of it in the Spring without ANY ill effects - puts the tube away and doesn't touch it again until fall/winter time.  No withdrawal, no redness or swelling.  So I know it's possible for people to use TS safely without long term effects.  Why are we different?  Why do some people use TS for a few months and then suffer with horrible TSW symptoms for over a year?  WHY are we going through this hell?

For those new to my blog, let me recap - I used TS consistently for 30 years - since the age of 10.  I went through what I now know to be TSW approximately 10 years ago after the birth of my 3rd child.  It lasted about 3 to 4 years.  I did use over the counter TS in a mixture of creams so I never came off TS entirely but I went from a very strong TS to the weakest so my body reacted horribly.  It was a dark time for me - not being able to breastfeed - not knowing why I couldn't function to care for my 3 children.  I had liver damage the doctors couldn't explain.  I went on a quest then to find out what was wrong with me.  It took all these years to see the real damage that was done to my body - but TS was not the main culprit.  It was the tipping point I believe.

Let's fast forward to 2013 when I read about TSW and decided right then and there to stop TS and go through TSW all over again.  It was a no brainer for me but also a hard decision - it meant putting our dreams on hold and pulling our kids out of activities.  Hubby went on overtime and our life went from pretty good to crisis mode overnight.  I went into a full body flare.  I tried all the snakeoils.  I was beyond determined to find out WHY.  I mean as a nurse, I saw one too many burn patients - they had skin way worse than ours and they healed within 3-4 months.  Why are we taking YEARS to heal?  I took some of my cellular level hypotheses to a naturopathic doctor.  He confirmed my thoughts but with a slightly different angle.  It was a DNA issue (I thought it was an RNA issue regarding skin cell reproduction).  Turns out me and many other TSW patients have a genetic mutation regarding methylation - basically we cannot produce enough glutathione - the one thing that repairs and cleanses ALL cells in the body.  Now this finally made sense to me!  Our skin cells cannot heal from the damage of TS because many of us lack enough glutathione production.

Now there are some people who have tested negative for the MTHFR mutation - the more common methylation gene.  However there are upwards of 40 or so genes responsible for methylation.  Not sure if those people got a full panel testing done or not.  But many of us have and have found immense relief from the symptoms.  My relief came within 2 weeks of starting testing and IV glutathione injections.  I was even able to return to work on a part time basis.  My symptoms finally disappeared last year when I changed my diet.  I still get eczema on my arms if I eat dairy but no other TSW symptoms have come back.  And just an FYI - I started treatment at 8 months TSW.  I found complete relief around 26-28 months (I'd have to go back and re-read my blog to get more exact dates).  Now from month 8 onward, I never had another full body flare.  I had what I called micro flares - flaring in one or two sections of my body like back of knees, neck, hands, etc.  It wasn't enough to stop me from working unless my hands were flaring.  I had shivering/feeling cold and hot flashes for about maybe 6-12 months.  Not really sure - it kind of faded slowly.  I remember the summer of 2014 when I was about 16-18 months TSW and I had a few days where the heat bothered me.  But I had my life back and was able to move on.

But there is one thing that must be addressed - the topic of moisturizer withdrawal - such a controversial issue in the TSW community and I understand why.  But I know I would have suffered more if I had not done MW at the same time of starting treatment.  My ND told me it was a good idea given my cells couldn't process anything I put on my skin - even natural stuff (although that was better if moisturizer was needed).  So I did MW and was in great pain for about 4-6 days.  I had to do everything but my neck and then did my neck some months later.

With this knowledge of DNA mutations, I came to understand why I had so many other minor health issues - my body just couldn't repair itself adequately.  If I ate bad foods, my body would then have a hard time processing the chemicals in the bad food - so yes, diet is extremely important for those in TSW who have methylation mutations.  And I discovered this first hand last year when I had that persistent eczema on my arms.  Guess what?  It's back because the last few months I have been slacking on my diet.  And my vitamins.  Oh - and I've been under a little stress.  But if all I have left over is eczema on my forearms, then trust me when I say I'm happy!

Bottom line....I know there is an answer for a lot of you still suffering.  I know there is an END to this hell of daily pain and burning.  I've lived it and now I'm on the other side.

But let's visit the topic of where are the healed TSWers?  Well for one, we are out living our lives - making up for those lost months and years.  For me that meant devoting so much more time to my kids and hubby as they carried me for about a good year - taking care of me and the whole house.  We are returning to those dreams we had to let go of for some time.  We will from time to time come back to give comforting words and pictures.  But many do not come back or visit often - it is extremely hard to see all of you suffering because we know exactly how you feel - you may think like I did that it would make us want to be there daily for all of you.  But what I learned is it is actually harder once we are healed to come back - we re-visit the pain.  It is agonizing to see your pictures as it brings back the pain we also went through.  It's not an excuse nor an apology - just the way it is.  I still return from time to time - either on my blog or on the FB page.  At times I will answer some questions.  But there are days I scroll past without even reading - knowing so many people are suffering with this causes many of us healed people great anxiety.  We so desperately want to help like I do - but some days are harder than others to return to the pain.  I've made myself a promise to keep this blog going and to return at least every other month or so.  I want to provide answers and hope for all of you.  I know exactly the despair and hopelessness you deal with daily or during the bad flares.  TSW not only affects us physically, but it disrupts our entire lives as we know them.  Our jobs and relationships are deeply affected.  Our mental health is tested beyond measure!  We lose ourselves to this affliction and we lose so much else on top of that.  All I can do is let you know that it does get better.  I personally do not believe that time is the only healer.  I personally couldn't swallow that motto.  It made me feel helpless and beyond despaired.  I rose up and looked for an easier way out of this crap and found it.  Don't give up - time is not the only answer in my opinion.  Maybe there are other issues besides methylation causing us to not heal.  Genetics is a relatively new science.  We need to keep going.  While we are eager and justified in wanting to go after the TS makers, I no longer blame them.  I take full responsibility in participating in the world's view that chemicals in our food and water and in drugs are OK.  They aren't.  This is not just a topical steroid problem.  This problem within us started before birth - our inability to process all the chemicals we come in contact with.  Eventually those chemicals add up and we blame the last big thing to cause us problems (like TS).  But I am now on a mission to rid myself and my family of any excess chemicals.  It's hard given how poisonous our world has become.  But I can grow some of my own food and make better choices about the other food I buy.  I can move to the country away from large amounts of pollution.  I can air out my house.  I can keep the level of chemicals I have to deal with at a minimum.  Basically I am taking control of my own health.  You can too!  Hold on to the good fight because it is so worth it in the end!

I will leave off with a few pictures - only one with me included as I'm always the one taking the pictures!  But there was no way I would be doing all these things if I was still suffering.

At the range a few months ago - this was my 10 year old's target with a 32 pistol.  I'm a firm believer in our right to defend ourselves.  Our kids are taught from a young age the dangers of firearms and the proper use and handling of them.  My target had more center mass holes but then again I've had more practice than my 10 year old!  :)

At the D.C. zoo last month

Seeing the sights in D.C.

This was at the end of our hike through the zoo - anyone who has been through it all knows how big that place is!

At Mt. Vernon

Hiking in some park near Mt. Vernon

On my way back to KY, we drove part way through the Skyline Drive in VA - so pretty!

Here we are at Luray Caverns!

A few weeks ago on our property - hiking to the top of our hill for some kite flying

Flying kites!  Such a beautiful day!

We think we may have to settle for building a home at the bottom of the hill instead of at the top.  If so, then we would build here after we knock out those few trees.  

At Natural Bridge State Park here in KY back in Jan or Feb

It was a dangerous hike!  Very icy and slippery!  

The natural bridge from below

Me one morning a month ago - I'm participating in a diet bet group so I have to take pictures of myself on a scale to verify my weight.  No redness or skin issues whatsoever.  Just a grumpy look first thing in the mornings!  

1 comment:

  1. Thank you so much for sharing your story.
    I've been going through a horrendous TSW (on my face only) for 41/2 months. My dermatologist said last resort would be to go on accutane.I haven't heard anyone else mention this. Just wondering if anyone else has tried it or what their thoughts are. I don't want to go on accutane but at this point I'm getting desperate!