Friday, February 28, 2014

12.5 month update pictures

Today is about the 12.5 month mark.  I didn't get a chance to do a full body pictures show for my 1 year anniversary, so this is a bit overdue.  I continue to have the occasional mini-flare here and there.  This past week I had some itching on my hands only in a few spots and some irritation show up on my chin.  Otherwise no oozing whatsoever. I noticed my hands started feeling a whole lot better this week.  The swelling is gone, but the irritation and sores remain.  My hands remind me of my ankles have had sores on them for months but not really flaring except for once in a great while.  This week I noticed a lot of the sores finally starting to shrink and heal.  My clear areas remain clear. Neck feels amazing!  Face has the occasional dry or irritated area mostly chin and nose. Back is almost all clear....the white/pink patches are the healed areas that do not tan well in the tanning booth.  Only a few very small sores on lower back nearly healed now.  Nothing really itches except my hands and sometimes my ankles. Otherwise I feel great. No pain, no swelling, no insomnia! I know I could potentially flare....that sticks in the back of my mind.  But given I've gone 5 months now without any full body flaring, and my mini-flares decrease in length of time and area affected, I think my regimen of MW, supplements for MTHFR genetic mutation, healthy eating, and tanning have done what I hoped they would....decreased severity of symptoms and radically decreased my potential time of TSW.  I looked back on my blog today and realized just how far I've come!  I am so beyond thankful for my healing....all thanks go to God for showing me the way.  I am thankful to finally have my life back.  I don't think about my skin too much anymore....except my hands only because they are the last area that needs healing and I use them all day long,so it's hard not to think of them. But the rest of my body is great...I give no thought to what I wear or whether I can go out or not due to the state of my skin.  My hands keep me from working still as I don't want to go backwards with them again, but I'm currently looking for a position where I will not have to use my hands as often.

So here are those pics:

Me looking not so hot this morning before coffee!  Just a few irritated areas here and oozing or swelling.

Left hand....swelling and redness nearly gone...right hand is the same.

Right ankle area improving slowly

Same with left ankle area. Feet however doing very well.

Rest of my legs perfectly clear with white, smooth skin.

Neck continues to look and feel great....this was by far the worst area throughout my TSW.  It is so nice to finally have it feel normal!

Back doing very well minus the few remaining sores on left lower area.  

Right inner arm discolored from the healing and tanning. Small left over irritated areas...they are nothing really and only itch maybe once a day if that.

Tuesday, February 25, 2014

Moving On

A fellow TSW warrior has stated she will be stepping away from blogging so much....she will be surely missed!! Her blog was one I read from beginning to end when I first discovered ITSAN and the TSW community.  It is full of great information and encouragement.  I don't know what I  would have done if it were not for hers and many others blogs out there.  I was able to get an idea of what I was up against going into TSW.  Everyone's journey looks different, but there are similar symptoms and patterns.  I was able to determine that taking time off of work was going to be necessary and my husband and I were able to make the necessary plans for that.

I remember Jake's blog written by his partner.  I remember feeling a sense of loss and sadness when she wrote "It. Is. Over."....yet at the same time I was so happy for them that they had moved on with their lives.  I think that feeling of loss is normal....we hang on to the words of those who have gone before us.  We wait for the next blog post waiting to see pictures and progress as it brings hope during our darkest moments.

I had the same feeling recently of wanting to move on....step away from everything TSW.  Not because I don't  want to help those in need.  On the contrary I want to help more now that I feel so much better.   Yet I have been so overly consumed by my skin for the last year, I now have this desire to never discuss skin ever again.  It's as if talking about it will make my skin regress somehow.   I know how silly that sounds yet it's how I feel.  I want so desperately to do a study on the MTHFR gene mutation and its possible link to TSA/TSW and help those to get through this process faster.  Yet at the moment I can't find the ability to focus on that right now.

Maybe this is a form of PTSD....I feel anxious just at the thought of writing this post.  I worry about so many of you going through this as I know how painful and dark the first months are.  I realize I have already stepped back from blogging and posting on the forums.  I read everyone's blogs daily but no longer comment.  It's not than I don't have anything to say as I want so badly to provide the encouragement and words of  kindness so many  of you need.   But for  some reason I have already started putting up walls. I have no idea why.  All I know is I see it happening not just to me, but to others who are in  the final stages of healing.

I can't make any promises, nor am I going to make any major announcements. I am just acknowledging that I see myself moving on.  I see myself no longer desiring to take pictures for comparison.  I will still continue to post pictures as I know how others' pictures helped me cope. Yet I no longer need them for myself to see if I can pick out any positive changes.  I plan to move on with life as I have over the past 4-5 months since seeing a major improvement.  I plan to start blogging more on my "other"  life....the one that includes homeschooling, healthy eating, and homesteading.

Please know that I am always available for questions.  I am not abandoning any of you!  I am just living my life more and more each day and no longer needing to focus on my skin so much.

As for my skin....status quo for now....hands still bad but looking better.   Sores on ankles starting to finally heal and neck/face perfectly clear. Lower arms dry and scabby. Upper arms, legs, torso perfectly clear. Overall about 90% healed and clear.  No major flares in 5 months....just isolated mini-flares from time to time lasting less than a week. No spreading of bad skin in 5 months....just progressive healing.

My success I can now say with 100% confidence is treatment of my MTHFR gene mutation. Secondary to that moisturizer withdrawal played a huge part in healing.  I see that there are now 4 of us with a confirmed MTHFR gene mutation.  I think this is key to why some people develop TSA and others do not.  I am really praying the NEA gives this some consideration.  I think it may play a critical role in how eczema is treated in the future.

I have some pictures to take and upload soon.  My skin  looks  and feels great (except my hands).  I think I am on the tail end of this TSW,  If I'm wrong I will gladly say so and post pictures regardless.  I do not wish to give anyone false hope yet being one year out after 30+ years of strong daily use of TS, I think I sped up my healing by at least a year or more.  I can't say this with any amount of proof obviously except to say that my first 7-8 months were pure hell and one long continuous state of flaring. The pain was out of this world. I went from that to working full time in 3-4 weeks after treatment began.  I would still be working full time if my hands did  not react so badly to the harsh soaps at work. I am full of energy, have no pain, and no body temperature problems.  I have some itching and flaking here and there but that has been reduced by over 75% at least.  I took a trip cross country and back doing 100% of the driving taking care of 3 kids and a puppy.  Not an easy task by any means....yet it was fun and adventurous.  I had no problems with deciding what to pack or what to wear.  It was by far a tribute to my success and determination to find a way to heal faster.

Seeing my brother for the first time in 9 or 10 years!

First time my neck cleared 100% 

Our adorable new puppy Aurora.

Friday, February 21, 2014

Adventure across the country!

Last week Thursday hubby and I were sitting on the couch talking about all sorts of of them being the puppy that we had yet to receive for one reason or another.  I made a funny comment saying how I should  just drive out to Nebraska from NY to get her (about 1800 miles).  Then I thought more about it...I'm out of work, haven't seen my brother in almost 10 years and my uncle and cousins in 6 years, and I have all sorts of energy!  My brother and cousins all live in Denver about 3 hours away from the puppy. So I sent a text to my brother asking him what he was doing for the weekend.  Not much he the adventure began!  I told him I was thinking of coming out  that way for a short visit.  He was so excited!   He then sent out FB notices to the cousins....yep they could all make it for Sunday dinner!  So I told the kids to pack a bag and we left Friday morning.  Hubby stayed behind because he had to work. :(  But boy did we have an awesome road trip!!!

We drove from NY to the middle of Illinois the first day....encountered a bit of snow but nothing major.   Second day we drove across Iowa and Nebraska and stayed overnight in Ogallala.  The next morning we still had a 2 hour drive to the breeder's home.  We got our new puppy and  proceeded to drive to Denver.  It was a great trip! We then had dinner at my brother's house....17 of us in all I think. What a blast!  Next day we hung out, went to a park and then Dave & Buster's for dinner. And Tuesday we were off to head home. Stopped along the way to visit  my grandfather and aunt. We made it home a few hours everything unpacked and settled in for the night.

Overall it was a ton of fun and great for clearing my mind!  I love road trips!  I had a hard time here and there driving because my hands would swell.  Right now my hands are in a state of status quo....not better, but not worse. My face cleared all up this week as well as my neck and chest.   Have residual sores on my forearms and my  lower legs/ankles remain status quo like my hands.  I am really hoping my hands clear up soon so I can return to work.  But until then I will focus on puppy training and cleaning my house!

By the way....interesting results so far on my poll....I re-opened the poll for another month so more people can chime in if they try the supplements or  get tested.

Saturday, February 15, 2014

Happy 1 Year to Me!!

So yesterday I had my one year anniversary of TSW!! I am currently on a very cool adventure so pictures and an update will have to wait until next week.  I will be mostly absent from the online world - I can receive emails but my phone is giving me grief on sending them.

As for my experiment with the tea tree oil and apple cider vinegar, all I can say is one day ofit and my hands bblistered up and became macerated again. I truly give up!! Finally todayiI have them back in dry mode....painful but at least not itching like mad and sloughing off!  I have no idea what is going on with my hands but going to just leave them alone. Once I get back home I will start the light therapy.

Wednesday, February 12, 2014


Hello fellow TSW warriors! I am conducting a poll both here on my blog and also on the ITSAN forums. The poll on the forum got moved from the common area to the experimental area so I thought I would put it here on my blog as well  (in the right hand column).  I am very happy to say we have a 3rd person now with known MTHFR gene mutation....not happy for Nancy given she is dealing with TSW, but happy that she now can get treatment and possibly prevent any future physical problems that may be related to this gene mutation.

For anyone who does not keep up on all the comments, I received a comment from Nancy on my recent is just a few sentences from her comment: "I have one copy of the C677T mutation and one copy of the A1298C mutation. From the online reading I’ve done, I think that particular MTHFR mutation is called Compound Heterozygous, meaning that I inherited one copy of the 677 mutation from one parent and one copy of the 1298 mutation from my other parent."

I know quite a few others who are waiting for their results. I plan to contact the NEA task force looking into TSW about the results if over 75% test positive.  I think if at least 3 more people test positive, I think it would benefit all of us to have this tested on a large scale.  In the forums, someone mentioned that while they were not tested, they found their loved one going through TSW and starting the same supplements as me to have an approximate 60% improvement in their skin.  There are others finding improvement as well and have not been tested.

Hence why I want to start this poll.  It is anonymous and going to help me determine how I proceed with finding funding for a larger scale research project. If the poll shows people are trying the active B vitamins but finding no improvement in their symptoms then it may not be worth going any further with my research.  But if many people are finding improvement but can't afford to be tested, then I may be able to obtain enough funds to test 10-20 people.  And if multiple people are tested and all come back positive, then a larger scale research project may be possible.

Just a side note regarding moisturizer is still a hot topic in the TSW community.  And here's my spin on it....I think it is necessary to at least try. And if I am right about the gene mutation being present in most people suffering with TSW, then it makes perfect sense why MW works so well.  The gene mutation stops cells from being able to cleanse and repair. When we put anything on our skin, our cells have to cleanse any foreign substances.  When one has the gene mutation and puts let's say Vaseline on their skin, the skin cells cannot process out the chemicals in the Vaseline at a normal rate.  So the skin becomes inflamed and itching intensifies.  This is my theory, but I do know when I stopped putting anything on my skin, the inflammation and itching nearly went all away.  So I believe MW works well for those in TSW (and who may have the gene mutation) because the body can focus on repairing the skin cells and not having to "cleanse" the cells constantly.  The energy that was being used to cleansing can now be directed to repairing and the skin becomes stronger.  People who do not have TSW or the gene mutation can out lotions and whatever on their skin because the body can cleanse the cells of toxins at a "normal" rate so that inflammation never occurs.  Obviously there are hundreds of other factors that can affect the skin when moisturizers are applied, but this is my theory in relation to MW AND the MTHFR gene mutation.

Thank you all for your love and support!!! And thanks for voting!!! :)

Sunday, February 9, 2014

Pictures of recent flare....

I took these pictures I feel much better.  Even though my skin still looks the  same, it continues to feel better.  The oozing on my hands along with the itching is down by over 50% from yesterday.  I also noticed today that the cracked dry areas on the palm side of my hands (had a few spots on a few fingers) are almost all cleared up today.  The beginning of healing?  Who knows.  I have to let work know tomorrow about whether I am coming back or taking a month or so off.  Still on the fence about it as financially it will be difficult.  However if I go backwards again with my hands, I will be out of work anyway.  So it's not an easy decision...I know what I should do, but it's not what I want to do.

So here is what a year off of TS looks for me (next week I celebrate my year anniversary!):

Dry spots on chin, side of nose, and itching or oozing.

Neck and chest looking and feeling spectacular (compared to how my neck has been all  year).  Those last few spots almost healed.  No longer even irritating.

Leper looking left hand.

Right hand and wrist below same as left hand.

Right inner forearm...few dry itchy spots but no oozing.

Left inner forearm more dry and cracked than right arm but feels the same...just dry and slightly itchy but no oozing.

Left inner ankle and lower leg.

Right inner ankle same as left...few oozing spots but overall just itchy.

Left leg looking and feeling great!

Right leg the same - feels and looks great!

Tummy....other than the fat, not bad...same sores around belly button I've had for months like my ankles - just taking forever to heal.

Left flank doing better but same sores there for months now.  Rest of back is perfectly clear like my legs, chest, and upper arms.  

That's it....again after waking up feeling better today, starting to think this was a bump in the a one week flare in my isolated areas, and not a huge all over spreading flare that will last for months.  Going to give it a few more days, but today I felt myself turn a corner in the positive direction. 

Saturday, February 8, 2014

Next Big Flare OR Bump in the Road?

For the last 3 days or so I have been absent from the computer.  Not sure what is happening to my skin as none of it is anything I have experienced before like this.  Not sure if this is just a big bump of a mini-flare, or the beginning of the next big flare I was hoping to avoid, but still thought might happen.  I've tried to give it a few days to see what happens, but I'm stagnant at this phase and it's nothing like a major flare, but more than my mini-flares that lasted a few hours.

It's hard to explain, but I will try....first off, if my hands were not so bad, I would still be working through what is happening's not debilitating or even stopping me from anything. I sleep all night, have no cold shivers, no redness, and no swelling.  My hands remain a mess so I am still out of work.  But, they no longer have that tight feeling that hurts to move.  I just have multiple sores everywhere from my fingers to my wrists. They ooze if scratched.  The rest of me has scattered sores like on my hands....ooze if scratched and showing no signs of healing.  The sores remain in my problem areas spreading of these areas so it is hard to define this as a flare. But there is more  itching than I was having and I'm  tired of the ooze smell. Sometimes when I scratch, I  just break open old scabs, but sometimes I am opening up new sores...the skin will just slough off with one scratch.  It's frustrating as I was healing so well.

My problem areas: hands, forearms (inner aspect only from wrists to elbow), ears, chin, neck, chest, ankles, and  left lower back. My legs look great otherwise as do my upper arms and 90% of my back. My feet are 95% clear....have a few tiny dots left over still healing but nothing new in this area).  I plan to take pictures after my bath today....maybe I will post them later today.

I cried a few times....scared this will turn into a big flare, but so far it remains the same.  It's been this way for 3 days with no new sores or spreading. In fact today my hands feel better even though they don't look better.  Not sure what this is again because it is nothing like my previous major flare.  The itching doesn't even compare.  The only thing that seems similar is the dead skin is growing in my house....had to vacuum extra this week  And will be changing my sheets an extra day earlier than normal.  And the ooze smell is the same.  But that is all that is similar. I only have pain when I scratch and break open the skin. Otherwise I am pain free. My neck will itch and ooze ever so slightly, but I can turn it without pain or discomfort.  If I had to compare it to anything, I would say it reminds me of the eczema I had as a teenager. It's annoying and itchy, but doesn't disturb me.  Of course my hands are more than annoying as I can't work with them having sores all over them, but otherwise I can function.  I  find myself though not wanting to go out in public because of how my hands look...I feel like a leper.  I feel people might be wondering if I'm contagious.  It's stupid I know,  but the redness never bothered me like these sores bother me.

As for what I am trying....UV lamp still not here, but my regular tanning is doing nothing for these sores. I just finished a round of antibiotics but again, no change in my hands. The antibiotic cream did nothing. I've switched a few things in my supplements that might have affected me....changed brands of my active folic acid and the dosage is much lower....went back to old brand yesterday....maybe that was impeding healing? I also added vitamins D and E to my mix. And my ND put me on low dose naltrexone to see if it would help. Naltrexone is a common drug used in hospitals to reverse the effects of opiates...given for drug overdoses.  However studies show it may boost the immune system.  Some people have found relief from auto-immune disorders with it.  It has no known side effects and it has been around for I thought I would give it a try.  I'm at the point where I feel my healing is stagnant....I don't feel like I have gone backwards, but I don't see any healing taking place and that's discouraging.  I know we all just want to be done with this - just get it over with so we can move on with our lives.  And while I still want to help others with TSW, I too just want it over with NOW. I'm done thinking about my skin. I'm done dealing with it. It's just getting old.

If I had to really think about it, I would definitely say this is a bump in the road, and not the next big flare. I have gone over 3 months without any major flaring....just these minor flares in isolated areas.  This affected all my isolated areas at once but no spreading occurred as well as no  redness or swelling. It's hard to determine as there doesn't seem to be a specific definition for a flare...I think it is individualized as we all have different presentations.  But my first 7 month long flare was severe and this doesn't even come remotely close to that flare. So I find it hard to categorize as an actual flare.  I'm going to give it a few more days...if no improvement in my hands by Monday,  then I will have to cancel my contract and be out of work for another few months. It will be a huge bummer and I will hate to see my hubby work overtime again, but if my hands won't heal while not working, they will only get worse if I go back to work. :(

Hope everyone else is having a decent day!!!!!!!!!!!

Monday, February 3, 2014

Nothing New...

My hands look almost identical to the previous pictures....was going to take more pictures today as my hands FELT slightly better....still painful but definitely reduced by at least 20%.  Still having a hard time holding things like a cup of coffee, but overall I think things are now going uphill.  But pictures would do nothing except look identical to the ones I recently posted.  Hubby is still working for me....may have to take more time off if this is not clearing up by the end of the week. My kids are doing nearly everything for me at home...probably should give them a bonus on next week's allowance! :)

As for other things in life...puppy is still not here....we are getting her from Nebraska and apparently they are having a shortage of pilots there so many of the early flights have been cancelled all last week.  Supposedly she is coming in can't wait!  I on the other hand am somewhat thankful the flights have been delayed because of how bad my hands have been...can't even pet our dog we have here at home.  Poor thing keeps begging me to play with him but I can't.  He gets plenty of attention from the kids ALL day but he is a very needy dog!  Hopefully my hands feel better by tomorrow at least to the point I can take care of the puppy....the kids can help but the overnight potty trips will be left to me given I am not working right now and the kids sleep through everything!

Yesterday I went back to see the faith healer....the same one I saw the week before my huge healing occurred from the gene mutation therapy.  I am a Christian and I believe God continues to heal in this day and age.  I have personally witnessed miracles working as a nurse and have had many prayers answered that just didn't seem possible.  I never expected my skin to just miraculously heal right then and there in front of the faith healer.  I believe God puts things into place so that others can be healed as well through knowledge.  I don't know what God has in store this time, but I know it will be good!  As I was leaving the faith healer yesterday I was having  doubts that any further healing would hands actually had significantly more pain at that moment and I was wondering how I was going to be able to drive home.  The faith healer stopped me at that moment and told me that I need not worry, that God WILL heal my hands and skin.  Of course he did not give me a time frame, but just hearing that during my moment of doubt was all I needed to get me home!

Just going to try to get through the day today...have some paperwork to do for work...planning our next job....hopefully we will get something close to our property in Kentucky!!!

Saturday, February 1, 2014

Quick Post

I know I said I was going to stay away and give my hands a huge rest, but typing with tips of fingers is slow but manageable.

Just wanted to share pictures of my macerated hands after 2-3 days of using oil/fat on them covered with gloves. I know I shouldn't have done this, but desperate times leaves one brain foggy! I am now dealing with moisturizer withdrawal again....very painful and tight hands! OUCH! I have not had this much pain since my first 6 months! I wish I could take it back, but I can't.  So I have taken this week off to see if I can heal them to a point where I can work again.

As for my next kept saying I really should  go to Florida for a week to get some sun and ocean healing.  Well the price tag was too much for something that may or may not work at this point. I am 100% sure it would help most of my body, but not so sure about my hands given just how bad they are.  And it's my hands I need help with as the rest of my body feels like it is almost healed.  So instead here is what I am planning.....

Ordered a facial UV lamp....not as strong as the tanning beds, but should be sufficient.  3-4 times a day I will soak hands in dead sea salt water for 20 minutes. Then without drying or rinsing, hold hands in front of UV lamp for another 20 minutes. This should mimic the beach as much as possible in a home environment.   I also plan to do this 3 times a week full body....take a DSS bath, pat dry, get dressed and go directly to tanning salon with the salt water not having been rinsed off.

If anyone has tried the above technique please comment and let me know how it worked!

Now here are those lovely pictures: