An Important (and encouraging) Story!!!

This is "John's" story.  I am telling his story here (with permission from his mom) as it is a very important story to hear!  It truly shows how the MTHFR gene mutation plays into TSW.  I spent a lot of time between emails and a phone call to make sure I got this story correct!  It gave me so much hope and joy!  Please take the time to read this post!  Thank you!


 John is a young boy (grade school age) who has had eczema since a baby.  He has been prescribed TS (Triamcinolone) for the last 4 years and Protopic for 1-2 years.  He saw an integrative doctor 12/2012 and she started him on supplements and a strict diet.  John's mom continued applying TS except for about 5 weeks in January....she said she thought the diet and whatnot would help and he would no longer need the steroids.  But his skin got significantly worse - he appeared to suffer a flare of TSW but his mom was not involved in ITSAN at that time.  She said he would awaken multiple times a night coffered in blood.  After 5 weeks of this she started applying the steroids again.  She said she tried to stop many times but by day 5 or 6 of no steroids his skin would get so much worse - so she would apply the cream again. 

Then in May she got the results of some blood work the integrative doctor did.  One thing was that he tested positive for the MTHFR gene mutation.  John's mom at this point didn't really look into it as she was pretty exhausted from researching everything and anything related to his eczema (Oh that sounds so familiar!).  But she added in the methylation vitamins the doctor recommended (active B's that I take for the gen mutation).  She said she remembers the day well....about 2 weeks after starting the active B vitamins, on May 24th, she applied the TS for the last time....she said 5-6 days later he no longer seemed to need the steroid cream.  (If you recall I went back to work 3 weeks after starting my supplements for the MTHFR gene mutation).  Here is a direct quote from her (with name changed) that describes his skin after starting the supplements:

"He continues to be rashy, dry, and exceptionally itchy.  In comparison to other TSW warriors I read about, I think 'John's' mini withdrawal in January was as bad as most.  But, his second withdrawal in May was different and easier....He continues to sleep at night, thank goodness."

This puts John at 10 months TSW.  I explained to John's mom how my mini-flares have been since starting the supplements and she states that is how John's skin has been.  She emphasized that this has not been a picnic for them by any means, but compared to what others have been through she noted that his TSW seems to be milder in comparison.  She ran by my MTHFR information recently and wanted to share his story with me as she believes like I do that it may be the key piece in how bad one suffers with TSW. 

John's story is important as he started the supplements prior to stopping the TS for good.  Considering he still suffers with TSW at 10 months I think that the supplements do not shorten the suffering of TSW significantly, but it definitely seems to lessen the severity of symptoms.  Now there are other things I am just now thinking about that may or may not prolong his TSW.  I forgot to ask if she applies any moisturizer to his skin.  She did mention he does not bathe a lot as the skin still burns with water, but I completely forgot to ask about the moisturizing.  I still think using moisturizers with TSW and having the gene mutation will prolong the TSW.  But taking the supplements will definitely lessen the symptoms. 

Pictures....

I'm really at a place where I just don't mind my skin at all.  My hands are to a place where washing dishes and taking showers do not bother them at all.  I've worked the last few weekends without any flaring or worsening of my hands.  In fact no mini flares in about 2 weeks....I had to go back in my blog to find out when my last mini flare was...I wrote on 3/14 that I had had a small mini flare on my neck a few days prior so that would put me at around 2 weeks mini-flare free. And of course no major flare in over 5 months. No complaints here. Sleeping is good, energy is good, life is great!  As the pictures show below, sores are still healing...more quickly on my hands than ankles.  Chin still slightly irritated looking, but doesn't itch.   Everywhere else is nice and clear.  Back is all cleared up. Legs are wonderful.  Arms have some dryness but previously irritated areas are nearly all cleared up.  Just have my hands and ankles and one tiny dime sized spot just above my belly button.  I'm really looking forward to wearing short sleeves this summer!!!! :)

This shot is whited out a bit....skin tone is like my right hand below.

Both hands are white/pink in color....note the tanned wrist....my hands are only tanning on a few fingers.  Otherwise I think more healing is needed to get my skin tone and texture back to normal.  Note my right foot in the top of picture....top of right foot is finally sore free....the white/pink areas are the scarred areas.

Left inner ankle....seems no different than last picture a week or so ago...still itches from time to time, but hasn't oozed in ages and there is no more swelling. 

That's it folks....I think this is the final weeks of my TSW. Going to give it another month or two, but if I remain flare  free then I think I can declare myself healed in about 2 months.  That will put me at 7.5  months free of major flaring, and 10 weeks free of mini-flares.  My mini-flares have been very consistent over the last 5-6 months....decreasing in length and areas affected.  They went from lasting 2 weeks affecting 3-4 problem areas to lasting 15-20 minutes affecting a dime sized area.  And in 2 weeks, nothing. My surface dryness here and there causes some itching, but nothing I even think about.  Haven't had any blood spots on my clothes or sheets. And my temperature issue seems all back to normal....haven't had a hot/cold flash in well over 2 weeks. I have been on 2 major road trips during the last few months and planning on another one soon. I don't pack anything special...no ice packs, no extra clothes, nada.  In fact I didn't even bring my supplements for the last getaway.  I almost feel like apologizing for being so upbeat....as I know how horrible it feels during the really bad days.  But I am bringing hope to all of you!  I never expected to feel so good at 13 months after using TS for 30 years consistently.  And the good thing is I have felt good for the last 5 months!  I no longer feel this is a long break....I know others have had up to 6 months of a break before flaring again. But the average break seems to be between 2-4 months. So a big part of me feels healed.  There is that 0.01% left in me wondering if I will flare again.  Time will tell! (And so will I if I do flare). 

A stress free weekend trip!!!

This past weekend we ended up going to Rochester to visit family.  It's about a 3.5-4 hour trip...depending on how many stops are needed for 3 kids and 2 dogs.  This was the first trip in the last year that was completely stress free...I only had to worry about packing the benadryl for sleep.  I didn't even bother with all my other vitamins because at this point in the  game, a few days off of them does not affect me at all.  I remember the first 3 months on the supplements I had to make sure I took everything everyday.  If I skipped a day of my MSM powder, I would end up oozing and inflamed.  Now I have cut way down on the MSM powder and if I skip a day I notice no change in my skin.  I figured I will stop taking everything except the active B's and fish oil when I run out of my supply...even if my skin is not all the way healed.  I am only a few days away from running out of  TMG...I will not be ordering anymore.  Now after a week after something ends and I notice my skin getting worse, I will re-evaluate the need for more.  But for now that is my plan.  Things are going very well still. Healing remains slow, but steady.  My hands even though dry looking feel soft in many areas....I am thinking the oils are finally coming in.

Overall things are great!  I cannot be happier with the progress of my skin and not flaring at all anymore.  I control the dry itching with tanning and that is all the care and thought I give my skin now.  I would like the dry sores to heal faster,  but I still feel like my body has tons more internal healing to do.  I have tons of energy but still get tired from time to time.  I think after 41 years of my body not being able to heal properly, I believe it will take at least a few years for my body to get to full function. But in the meantime, I plan to enjoy life and do as much as I can....and just realize I will need breaks from time to time to allow my body to heal fully.

The next month will be eventful!  We are planning on our final move to Kentucky....very exciting times!  We have plans to purchase a small house on a few acres with a barn and chicken coop.  If all goes well I can plant my garden this spring and get some chicks!  In the meantime I will be taking online courses to become a medical herbalist.  I cannot stress just how happy I am and how wonderful I feel!  There IS life after TSW and it is glorious! If you are having a very down horrible day, keep this in mind!  My first 8 months were a nightmare, but then life suddenly got better and there has been no turning back to bad times.  I pray everyone can have such  a wonderful recovery!!

Forgetfulness is not always a bad thing!

I had a great laugh last night!!  I realized just before going to bed that I had celebrated the first day of Spring with my kids (celebrating as in just acknowledging and being excited) yet I COMPLETELY forgot to acknowledge my 13th month mark!!  I had actually blogged that day with some before and after pictures - yet did not mention it was my 13th month anniversary of TSW - because I completely forgot - it did not even cross my mind until last night.  I had marked each month of TSW as if they were huge milestones - and they were!  But obviously with feeling so good, this truly shows I am not thinking about my skin anymore on a regular basis.  It is no longer the focus of my life - not even close.  It is now pretty close to the bottom of any importance.  And that my friends is a truly wonderful feeling!  Forgetting my 13th month mark is a blessing in disguise!  It shows me that I wasn't just talking about moving on, I actually have moved on!  When you get to this point, the healing is truly right around the corner.  I may have really dry hands and ankles still, but the TSW itself I think is nearly burnt out.  I will consider myself fully healed when I no longer have to do anything special for my skin.  Currently I am tanning to keep the itching away.  Once I am able to go a month without tanning and my itching is gone and I have no more mini-flares then I will consider myself healed. 

I was just thinking about all the people that suffer with a bad flare somewhere between months 11 and 13.  There seems to be some patterns with TSW...one of those is the "dreaded" 11th month, 12th month, or 13th month flare.  There is also the 9th and 15th month flares.   I have had none of them so far.  I will celebrate much more when I hit my 14th month mark...that will be 6 months without any major flares.  I will also celebrate a 3 month no more mini-flare mark.  I have to go back in my blog to see when I had my last mini-flare.  Honestly I can't remember.  (Another good thing to forget!). 

And before I forget - just wanted to mention we now have 6 people tested for the MTHFR gene mutation with 6 positive results.  I plan to contact the NEA again soon about this.  Hopefully more can be done to look into this factor. 

Tanning helped!

Yippee for another wonderful night of sleep without benadryl and melatonin!!  Just the one day of tanning really tamed the itch! I went again this morning and the itching  is just about non-existent!  Hands and ankles continue their slow, but steady healing.  Got a lot done today! Started packing and organizing more. My kids keep asking me if anything is wrong because I'm constantly moving lately....after a year of being a constant on the couch, all this activity is not something they are used to!  So much to do and so many good things happening! :)

New chapters in life...

At 41 years old I can look back on my life and clearly see specific chapters I have had...marked by major changes.  There were the childhood chapter, the high school and college chapters, the single life/dating chapter, the beginning my career chapter, getting married and having children chapter, and so on.  Even though my children are still relatively young, we are beginning a whole new chapter in our lives.  Hubby and I have been traveling nurses for the last 7 years and during that traveling, we searched for a cure for my ever worsening eczema.  This year is the transition we make to settling down and finally being healthy.  We are also diversifying our careers.  We will continue to be nurses but start new business...herbs and farming. This is a very exciting time for us as well as stressful and full of unknowns.  All I know is this new chapter is going to be very different for one reason...I will no longer struggle with my skin.  It will be so amazing to not think about it all the time.  It will no longer control what I am able to do on any given day.  It will no longer bring me down because my liver is toxic and my adrenals are shot.  This is my chapter to really LIVE!!  The energy I have had lately is amazing!!  I cannot believe how great I feel on most days now.  It is truly a blessing from our Lord!

As for my skin....nothing new to report as things are status quo....no flaring and slow steady healing of my hands and ankles. I had more than usual itching this week....all surface itching.  I think it's due to having a higher than normal bacterial count due to going back to work and not taking the time to tan. Tanning seems to really keep the itching down. The UV rays are great at killing bacteria!!  So off I went to tan this morning and will go back 2-3 more times this week just to get the itching back to a minimal level.

HEALING & Before/After Pictures of Current Problem Areas

I realized while typing an email to a friend yesterday that I've slacked off on pictures....I used to post pictures all the time.  Now though things have been stagnant....very few mini-flares, no real problems anywhere....just the same areas ever so slowly healing.  It's nice actually since I really don't think too much about my skin anymore on a continuous basis.  I often wake up, have coffee, read the news, get the kids started on schoolwork, get breakfast, and then maybe I will take notice of how my skin is doing.  It itches here and there...but I mindlessly scratch and move on.  There's no more bone deep itching (you all know what I mean!), no more burning or pain, no more oozing, no more chills.  When I took my turn for the better, the one thing besides the pain and condition of my skin that changed drastically was the chills.  I no longer felt cold to the bone anymore!  In fact I turned a 180 and was constantly HOT all the time.  I kept the thermostat at 62-64 degrees F all winter.  I froze everyone here at home!  I wanted to exercise more but didn't because I couldn't stand the idea of getting hotter!  Even in the bitter cold!

And this is why I know I am finally healing and on the tail end of this TSW:  Not only have I not had a full body flare since October 2013 (5 months ago) and have seen consistent progress towards healing, but my body temperature thing is now almost normal....I now feel the cold like a normal person!  I now keep the thermostat around 67-68 and still feel a bit chilled like everyone else here at home.  I'd raise it higher but with the bitter cold still and heating costs, I'm just now trying to be rational.  I go to bed and my feet are cold because our bedroom is one of the coldest rooms in the house.  I wake up and put my big robe on and wrap it tight around me because I'm cold like everyone else.  I have been this way for about 3-4 weeks now.  I have about 1 day a week when I feel warm like before.  Initially I would feel normal for an hour or so a day, then it turned into a few hours.  Now it's all day nearly every day...the one day when I might feel warm or hot - it's not all day....maybe a few hours.  I am  very thankful to finally feel normal!  I was dreading the summer thinking I was going to be dying in the heat!  But now I look forward to it knowing I will feel normal for once in my life!

Maybe this is not a significant sign of healing to some...but when I take everything into account, I see a massive shift from suffering to healing in the last 5 months.  As for the pictures....below I compiled a few pictures between yesterday and this morning of my current problem areas....all other problem areas are either just slightly dry/flaky with a white appearance or completely healed.  My only problem areas now are my hands, ankles/feet, inner arms, and chin.  I had a mini flare the other day on my neck, but the few areas where I scratched the skin too much are just about healed, so no problem there.  And the good news is the 2 mini flares I've had over the last 2-3 weeks occurred within the last few days (PMS time) and there was not one drop of ooze!  :)  So below I've done a before and after compilation - not all before pictures were taken on the same day....though they were taken within the last 2-3 weeks.   Let's just say a picture says a lot!! See for yourself:

Face about a week ago

Face this morning

Chin a week ago

Chin this morning after scratching it a little...notice the white streaks above my lip to the left - it only stayed white for about a minute or less.  Chin though looking much better.

Left hand a few weeks ago

Left hand last night

Right hand a few weeks ago

Right hand last night

Left ankle about a week or so ago

Left ankle last night

Right inner arm a few weeks ago

Right inner arm last night

Left inner arm a few weeks ago

Left inner arm last night

Beautiful, restful SLEEP!!!!

Throughout most of my TSW journey, I've been fortunate enough to be able to sleep most nights.  I found the right combination of over the counter meds to help me from the first month.  During the first 7-8 months before my big great improvement, I had a handful of restless nights and I had what I called a "waking hour" where I would wake up for anywhere from 5-60 minutes but fall back to sleep.  This typically occurred at 3 or 5 am. During that  waking hour I would of course itch, itch, and itch some more.

Here is what I took:  50 mg Benadryl, 800 mg ibuprofen, and 1000 mg acetaminophen.  Around month 9 or so I added 5 mg Melatonin and that helped me to not have that waking hour.  Since month 9 as well, I have been decreasing my acetaminophen and ibuprofen as well since I no longer have pain and my swelling is next to nothing.  I take 1 acetaminophen and 2 ibuprofen.  The one thing I noted is I sleep until around 10-11:30 am.  Typically I wake around 11 am after going to bed around 1:30 am.  No matter how hard I would try, I would  have a really hard time waking up at 9 am with hubby so I can see him off to work.

Well 2 nights ago I got into bed and before lights went off, I realized I had forgotten to take my meds.  So I asked hubby to just get my benadryl only.  In an hour I was fast asleep....and woke up at 9:45  feeling rested. Hmmmm....I thought to myself, "I wonder if the melatonin is making me feel groggy in the morning?".

So last night I was planning on skipping everything but the benadryl.  But we got to bed and I completely forgot to take even that!  I fell asleep for the first time in I don't know how long WITHOUT benadryl!  Talk about amazing!!  For the 1-2 years prior to TSW, I had to take benadryl nightly or I would never fall asleep because the itching was always so bad.  So this is absolutely amazing!  I did add something though...recently hubby's stomach has not been well (probably from all the stress of the last few years).  So 2 nights ago I started making him chamomile tea for him and having a cup myself.  I'm not a big tea drinker and honestly don't care for the taste.  I've tried at least 50-60 different types and flavors of tea during my goal to eat healthy.  I know herbal teas are significantly more healthy for you than coffee.  But I LOVE my coffee!! Mind you I have 1 cup every morning  and that's it....I used to drink a pot a day for years (shamefully even when I was pregnant).  My goal is to ultimately cut out coffee completely but in order to do that I need hubby to be on board as well so we can just get rid of it completely in the house.   :)

The bottom line is I am finally on my way to being on the very tail end of this TSW.  My goal is not only to have clear skin, but to have great energy, need no sleep aids, and be as healthy as I possibly can be!

Hope all my skin friends are getting decent sleep out there!

Great Progress!

I am devoting my day to updating my blog and making some phone calls.  I just wanted to pop in quickly to say I am doing very good!  My hands are healing nicely as are my ankles.  I suspect I am not going to be completely clear before another mini-flare comes on especially with my hands, but such is this TSW journey!  I worked over the weekend and my hands did not get any worse.  So that is good news!  I work again next weekend so hopefully they heal some more before then.  I have been tanning them daily at home with my small facial tanner.  It is no where near as strong as the tanning booth I go to 2-3 times per week, but I think it has definitely helped heal some of the sores I have. 

My forearms and chin are still irritated but there is no swelling or ooze - just dry skin in the process of healing.  The area around my belly button that had some irritation on it is now almost completely clear as is my lower left back.  The rest of my back is smooth and clear.  My ankles have those sores on them still, but they are shrinking a little bit each day.  I actually got up yesterday morning, got ready for work, and never once looked at my ankles or "inspected" them.  I might have glanced at them while putting socks on or drying myself after my shower, but it never occurred to me to see how they were doing.  I looked at them when I got home from work because they started to itch ever so slightly.  I cannot wait to go a whole day without thinking about my skin!  Of course I wake every morning to see how my hands are doing as they are still the worst area, but with all the recent healing going on, I am hoping they clear soon!  It would be so nice to not worry about them anymore! 

My energy level is still good!  Not great or at a point where I can say it is normal, but I no longer take naps and I can force myself to do the things I need to get done whereas before there were days I couldn't even force myself to do what was necessary.  I still sleep in on my days off sometimes until 11 or 11:30 am.  Of course I do not go to bed until 1 or 2 am because I wait up for hubby to get home from work.  But overall I am happy with my increasing level of energy during the last 4-5 months.  I'm still not ready to start a daily exercise regimen but I still take a walk or use my elliptical about 2-3 times per week. 

So that's it folks - doing very well and hoping to see more progress in the next month or two! 

Did quite the number on my ankles last night + other pics

So as I was saying the other day I was doing quite well minus the very small mini-flare I had on my hands and ankles the other day.  Last night I was up until past 3 am....had some insomnia I've not had in a long time.  It was as if I downed 3 cups of coffee or something!  My brain was super wired!  I couldn't shut it off! While my mind was racing, I noted my chin and left ankle started itching like mad and I got hives on my left elbow.  So weird!  This morning I awoke to some increased irritation on my chin and an all broken open left ankle....I truly tried to not scratch while awake  but apparently scratched in my sleep! UGH! I don't have any burning pain or oozing.   But the areas are slightly itchy today and the hives are completely gone.  Thankfully I did not scratch any of those open!  Everything else is status quo. So below are the  pictures I just took and below those are from 5 months ago just before I started the supplements for the MTHFR gene mutation.  It helps to have some comparison shots to see progress!

Close up shows chin irritation and dry skin. I don't really notice the dry skin.  From a distance it is barely noticeable.

Overall face looking decent

Noted slight itching on left side of face (typically my better side throughout all of TSW). 

Left ankle scratched up.

Face about 3 weeks before starting supplements 

Same day as pic above

Left ankle about same day I started supplements. 

Left ankle earlier this week.  May look worse than 5 months ago to some, but I see a huge  decrease in overall redness and swelling.  There are more sores, but they are really dried out.  

Flares and Illness

I don't know about anyone else with eczema or TSA, but all my life as long as I can remember I would get a really bad flare with each and every illness no matter how big or small.  A sore throat would cause a flare as much as the flu would. A few days ago I developed a minor GI bug - it got worse this morning and then has progressively gotten better throughout the day with soup, fluids, and rest.  I have not had a mini-flare in over a week until the other day when my hands and ankles flared a bit for less than an hour.  Today they flared for maybe 15 minutes this morning.  That's it.  I have even had some pretty significant healing happening on my hands today.  Very weird.  But let me tell you....to have such a minor flare during this GI bug is nothing short of a miracle! I mean seriously to me it's a significant step towards realizing just how healed I am!

Other than my mini flare and stomach issues, things are going very well.  Have my resume out to many places and praying my husband and I find a job in Kentucky or Ohio near where we bought property.  We are ready to settle down after 7 years of traveling.  In fact the reason we started traveling in the first place was during my first sort of TSW and we had no idea why I was so sick.  We were fed up with my doctors getting nowhere with my unknown condition.  So we set off in hopes of finding a doctor or specialist who could help me.  It has been an exciting time doing all the traveling we did, but at times very stressful with my health being so up and down.  It seems fitting that now that we know what's wrong and have a cure, that we are now ready to settle and build a life in  one spot.  :)

Since we have  no set date for moving yet, but we know we will be moving as soon as we get permanent jobs, I have started the process of cleaning and packing. I have really let the house go all last year with being so sick.  So now it is time for some true spring cleaning!!! :)

Praying all my TSW friends and family are doing well!  Just remember, if you're in a dark place right now, understand that it will  not be dark forever.  You can read back in the earlier days of this blog where I talk about being in some really dark places.  I thought I would NEVER see the light at the end of the tunnel.  Seriously...my tunnel was often pitch black with no hint of light. I thought I would end up there for years and years.  I had a 30 year history so my TSW sentence while unknown definitely had a long time  attached to it. But I have beaten the odds and my light is shining so darn bright right now!!!  I have the occasional gray clouds pop up from time to time, but for me the sky has not been overcast in 5 months!  No thunderstorms or rain!  Just a few clouds here and there....sometimes they block the sun for a few hours, but other than that, my days are bright sun shining days!  Soon enough even those pesky  clouds will be gone!  So keep that visual in your head....no matter how black the darkness gets, the sun is waiting for you around the corner!