Monday, May 26, 2014

Feeling great!

The last week was one of many detox reactions.  Glutathione detoxifies the cells so it makes sense that since I started back on it I would have cleansing/detox reactions.  These included fatigue (lying down and falling asleep in seconds), headaches (but had those from caffeine withdrawal as well), aches and pains in joints for a few days, hives (some people told me on FB that hives typically come close to the end of TSW), and crying jags.  Last night was bad - hives all over my legs and crying for well over an hour.  My husband didn't know what to do with me.  Then this morning I woke up feeling like a million bucks!  No seriously - today was the best I have felt in years!  I was out the door first thing running errands, making granola, cooking steak and corn on the cob, cleaning the fridge, and cleaning the house.  I never once felt tired the entire day - that has not happened once I think ever in my entire life.  I've always been tired - I don't know how "normal" people feel.

So anyway - still have to take some updated pictures of all the healing.  I've been too busy with life though to even think about my skin (which is an amazing feeling in of itself).  I return to work full time on Wednesday and am looking forward to that paycheck!  :)  But more importantly I will be soooooo very happy to have hubby not working 60 hours a week any longer.  <3  

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!  :)

Saturday, May 17, 2014

PICTURES - finally!!!

I was never able to find my camera cord - however hubby reminded me that he plugged in my camera once to our cell phone charger on a trip when the battery was low and it charged just  fine.  Lo and behold - I was able to connect the cell phone USB cable from my camera to my phone and voila!  Pictures downloaded!  Yippee!

This week was super busy!  Went for an acupuncture appointment which went well and my itching seemed to go away for about 2 days.  For it to work well, one must go every 3-4 days if I read that correctly.  That would get too expensive so I decided to research Qi Gong (thank you Dan for the information!) and will try acupuncture points at home.

I also saw my ND - he didn't think I was over methylating, but said even with the homozygous mutation he found that the majority of people do well on the 1000 mcg dosing of the active B12 and active folate.  So I decreased my dose and will stay on that for the time being.  He said I was probably in need of more antioxidants like Vitamin C, E and the glutathione.  I still had some oral glutathione at home so he said if I started to feel better in terms of fatigue and healing then I should consider a month or two more of weekly IV glutathione since it seemed to help my overall well being before.  I also realized I never bought more vitamin C which I ran out of a month or so ago - so I bought some more.  He also wanted to check my thyroid due to my lingering fatigue and recent weight gain.  But I declined at this point and started taking a few drops of Lugol's iodine a day to see if that doesn't help.  That was about it.  I told him about my stagnant healing - not getting any worse skin wise, but not getting better either.  He reminded me with my type of gene mutation that my body has 40 years of cellular repair to catch up on...and that's for my whole body - not just for my skin.  Oh, and for the ladies - he suggested I take some extra B6 and 5HTP the week before my period to see if that helps with my fatigue during that time of the month.  He said the hormone changes can cause a shift in neurotransmitters causing the fatigue and mood swings.  I will have to report back on all this in another month and let everyone know how all the changes have helped.

As for life - going well.  Took a trip down to NC and back - got to see my sister and 4 of her children.  Also got to see my Dad and step-mom.  It was great seeing everyone - and while I missed my hubby and kids - it was nice to have some time to think for a few days without any distractions/  :)  Also working on that contract to go back to work.

Diet wise - starting the Maker's Diet tomorrow.  I went shopping today and stocked up on a few things.  In the process at this moment of cooking 2 full chickens - when done I will strip them and shred the meat for chicken salads and for plain chicken to eat when one is hungry and "there's nothing to eat".  Also made a dozen hard boiled eggs - again for lunches and salads.  We will be on the strict version - 2 weeks of no dairy or grains.  No sugars - the only fruit allowed are berries, grapefruit, and cherries.  All veggies are organic.  We use raw butter from grass-fed cows,  All meats are organic and animals are fed food they were meant to eat.  All fish is wild-caught.  After 2 weeks we can add in fermented dairy and more fruits and beans.  My kids have actually started asking to go back on this diet as the recent eating out from traveling so much this year has taken its toll.

So will my change in diet help my skin heal faster - alone by itself - probably a little bit, but taking the whole picture into consideration of diet, supplements, exercise and whatnot, I am hoping to see some improvement in the lingering fatigue and the lingering dry skin patches and sores.

Now for those pictures:

Taken a few weeks ago with my 2 day flare of the neck - apparently my face was affected as well but I never noticed any itching of the face.  

Face today - slightly red from tanning this morning (as evidenced by the white goggle eyes) - neck not flaring, but not healing from that flare - this is the stagnant skin I went to see my ND about.  

Neck and chest a few weeks ago...again right after my 2 day flare.  

Neck and chest today - didn't notice it was blurry until now - skin is slightly pink around broken skin - but this only bothers me about once a day when it gets itchy - otherwise I don't notice my skin is irritated - it doesn't burn or hurt - clothes, wind, air temperature all have no negative affects on this area (or any area of skin for that matter).

Left hand 2 weeks ago - so slow to heal!

Left hand today - obviously healing is taking place here and there, but slowly

Right hand a few weeks ago

Right hand today - this is where I have had the most healing in the last few weeks.

Left hand palm side a few weeks ago when the skin started getting dry patches and itchy

Same hand today - the skin continues to be really dry and itchy - scratching open a few areas here and there.  

Left inner arm a few weeks ago

Left inner arm today - irritated and stagnant.

Left forearm/wrist where the few sore I have remain stagnant in healing.  They don't bother me and hardly ever itch - it's just annoying really that they take forever to heal.  

Right inner ankle where the sores still won't heal.  I have the other older pictures on my other computer - but they can be found in older posts on my blog as well. 

Left inner ankle - most sores are healed except for the one big one there.  The purple areas are scars from the sores that have finally healed.  Again - like my arm these sores don't bother me nor are they getting worse.  They aren't infected, they hardly itch, they don't hurt, burn, or get bothered by anything I wear.  It's just so frustrating they are still there.  

Top of right foot where I had irritated skin months ago - just scarring and dry skin, but otherwise no problems.

Left foot with no problems!

One sore on right calf - otherwise legs are fantastic

Left lower back - see the left corner - old sores now healed - just left over scarring.  Otherwise skin on back is great - a little dry up close, but doesn't itch at all.  

Left elbow - new problem!  This happened a week or so ago - left elbow was itchy - scratched and now this.  This reminds me of my "old-school eczema".  Just dry - otherwise it doesn't bother me.  

Left leg smooth and clear (although I need to work on the fat deposits!)

New Website!

I am way late on this as the launch of the new website was quite a few days ago - unfortunately I have been away for this past week and didn't have easy access to the internet.  So for those who have not seen it yet, please stop by and visit the website for NoMoreSteroids!  It is full of great information and it is encouraged that everyone participate in submitting relevant information for all to see!  Please stop by!

Monday, May 12, 2014

Time to Re-Boot!

I find myself in a stagnant phase - things are really good mind you, but I still have a long ways to go to get my overall health back.  TSW and the gene mutation have not just affected my skin - my entire body has been drastically and negatively affected.  I can feel certain parts here and there getting better.  Sometimes though our bodies need a boost or a re-booting to kick things into a better state of healing.  And I feel that I need to do a complete overhaul on my body!  I am not doing any radical thing like water fasting (there is no way my body is ready for that drastic of a cleanse).  Nor do I plan to try any snake oil (haha).  Instead I just need to get a grip on a few things keeping me stagnant.

#1 I need to stop any and all processed foods!  EVERY SINGLE BIT!  I did this once about 5 years ago and it really did wonders for my then declining health.  Because we have been eating clean about 70-80% of the time, this will not give me the same boost it did 5 years ago, but it will help a lot!

#2 Get my butt moving!  I have been slacking on the exercise for no reason other than I have been busy with so many things!  I also get tired 1 week of each month around my monthly.  It has depressed me each and every month.  I know my hormones still have a lot of healing to do, but seriously I can't move for that entire week.  That then leads me to do a whole bunch of stuff the next few weeks and by the 3rd week I start throwing in some exercise but then my monthly comes around again.  BAD cycle the past 2 months.  I was exercising up to 3-4 times per week then I dropped down to 1-2 times a week and now its a few times every other week or so. I need to make it a habit like eating!  :)

#3 Get my supplements fine tuned.  I will be seeing my ND in 2 days and I plan on consulting with a holistic practitioner that had previously done me a world of good.  Between these 2 consults I hope to fine tune things so that I don't have any over or under methylation issues any further.

#4 Get more fresh air!  I had been a hermit for most of last year!  It is time to get outdoors each and every day!  I was up at 6 am and worked on my garden this morning (before the bugs came out!).  There is much to be said about getting on one's hands and knees and playing in the dirt!

#5 The biggest one of all:  Get closer to God.  I miss my daily quiet time with the Lord.  When I was in the bad parts of TSW I couldn't process anything I read, including my Bible.  I sent up the flare prayers but did not have in depth prayer time - and now that I have become so much better - I have been thanking God but still not spending time with Him like I should  And that needs to change!

So off I go on my re-booting.  I have no specific start date - I will be making another road trip this week or next so I will be making up meal plans and going over a few things with the family first.  I'll post some updates along the way!

As for my skin - stagnant.  Dry on my hands wrists and ankles and my neck is still healing from the 2 day flare.  It started healing rapidly that one day then it just stopped. No other flares, just dry irritated and sometimes itchy skin in a few areas.  My hands look and feel good, but are dry and cracked in a few places.  Ankles still have those never-healing sores to contend with.  They had started to heal a few months back but then stopped and now they remain the better but thankfully no worse.  A few sores on my forearms remain but don't bother me.  I also have a dry patch return on my chin.  Other than that my skin is nice and smooth and clear.

Went to the acupuncturist today - went well - didn't itch all the rest of the day.  But then again I really don't itch much at all these days.  On a scale from 0-10 with 10 being the worst itching ever, I stay at around a 2.  Some days like today are a 1 while on occasion I have a day with a 3 or 4.   But I can't complain because the itching never keeps me from sleeping at all.  I don't wake up in the mornings itchy at all.  I have a few times throughout the day when I feel the need to scratch here and there. I have not had any bone deep itching in I don't know how long!  It feels awesome to be at this point - all I have to do is go back in my blog to remind me how bad things were.  So no complaints whatsoever - just giving an update!  :)

Thursday, May 8, 2014

Better, but...

I woke up feeling much better today - neck still dry and tight, but not painful. Only slightly itchy upon waking.  All good - that is until I went outside in the afternoon sun to start planting my sprouts in the garden.  Huge mistake!  Now I know why farmers do their farming before the sun even gets up!  Tons and tons of bugs out!  And I hate bugs!  Then I got hot as it was hot in the sun - which got me sweaty.  And I now sweat!  On my neck, on my back, behind my knees and all the other normal spots.  I was ok except for the sweat on the neck on my sensitive skin!  That started burning.  And I was already PMS'ing so altogether I lost it.  Mostly because of the bugs!  So hubby took over and I came back inside.  We now are planning to wake up at 5 am the next few days to get the rest of the seeds and sprouts planted!  Oh, and once I wiped the sweat off my neck it stopped burning.

Overall much improved, but I'm limited to what I can or cannot do probably for the next few days - limiting any sweating.  This made me feel like I was going backwards, but sometimes we need to take a few steps backward in order to take a huge leap forward.

In other news:  going to try acupuncture again.  I had seen a doctor from China who practices acupuncture here in NY now a few years ago prior to stopping the steroid creams.  At that time I had noticed some improvement for a few weeks afterwards but always ended up back to where I was skin wise prior to seeing her.  I honestly think the steroid creams were inhibiting me from getting any benefit from the acupuncture.  So after someone mentioned acupuncture in the NoMoreSteroids forum, I decided to go back and see her.  I was going to wait until I returned back to work, but hubby got a raise in his overtime rate which was a nice bonus!  So he agreed I should go before starting work.

And that leads me to the next thing - going back to work full time.  I have been part -time working about one shift per week.  I have not had any worsening of my hands from washing them multiple times in that one day, so I decided to return to work for a 13 week contract.  If I flare or react to the soaps, I will just not renew my contract.  And in order to minimize workload, I am going back to work at a smaller hospital and on night shift.  So the number of patients I will be caring for will be reduced by about half of what I am doing now.  The only potential downfall is working nights will tax my adrenals which have recovered nicely.  But even with 6 years off of working, I am still a night person - have been since I was a kid.  My body naturally wants to stay up late and sleep in during the mornings.  I tried to train myself to go to bed early and wake up early - tried that for over a year. But even though I was consistent and persistent, it failed.  I had worked night shift for about 7 years straight and I always did well.   I start in 2 weeks and am so looking forward to finally becoming financially more stable.  But most of all I look forward to having my husband not work 60 hours a week anymore.  He needs some much needed rest and the kids need their father around more.  I am truly blessed to have such an amazing husband!

Wednesday, May 7, 2014

The 24 hour flare???

Sounds just like the 24 hour bug or flu!  But seriously from yesterday afternoon until this morning I was intensely itchy on my neck and any scratching made my skin raw and painful.  This is the first pain I have had in many many months!  I don't know if this is a big flare coming on or just one of my typical mini-flares that last a few hours or a few days and go away.  Either way, I am watching it closely!  I think it was the first time in nearly 5 or 6 months I used an ice pack on my neck.  I still went to the farm to get our raw milk and I still went to the hardware store to get the power strips as we had a storm and blew our 2 surge protectors (yes, they are definitely worth their weight in gold!!). I still helped the kids with their school work, and took care of the dogs, and cooked meals and did all the typical run of the mill things I do.  So by no means was it horrendously painful or agonizing.  On a scale of 0-10 for pain, the pain last night was a 4 and this morning a 2.  By noon I had no more pain and have not had any since.  My neck feels raw when I touch it, but its not red or swollen or oozing.  It's just sensitive and dry with scratch marks.  No deep sores or cuts.  I was able to sleep all night without waking once.  And for the most part it seemed like a typical mini-flare for me, except for the rawness and pain. 

Do I think it's a dreaded flare coming on?   Honestly, not at all.  But I could be wrong, so I will keep posting about it until I know for sure.  However last week I significantly decreased my active B's due to what I thought were over-methylation symptoms.  I also cut out my MSM powder completely.  But after a bigger than normal mini flare a few days ago, I added in the powder again and increased my active B's by a little.  It is a balancing act with methylation.  Too much is as bad as too little.  So I increased again this morning.  I have an appointment with my ND next week to try to get this figured out - try to see what increments I should be increasing or decreasing by. 

Otherwise right this minute I feel normal.  I've had a lot more energy - wondering if it's from stopping any over methylation.  It is now after 11 pm and I have yet to flare any further anywhere today - no mini-flares or severe itching.  I will keep posting updates either positive or negative.  I know the majority believe that TSW flares cannot me correlated to anything - they are a thing of their own.  But after the success I have had with the gene mutation therapy and based on many other people's testimonies, I believe there is a direct correlation here.  At least for me - and this painful mini-flare that occurred the exact same week I reduced my supplements (by a lot) is no coincidence. 

So far people have related worsening symptoms (not a cause of a flare) to alcohol consumption, hormones, eating foods high in refined sugars and carbs, and of course stress.  My supplements have not prevented flares - but they have reduced them SIGNIFICANTLY so that my flares are mini in nature compared to how it used to be before treatment.  That's why I call them mini-flares.  My symptoms are reduced by over 80-90% or completely gone during the flares.   My life continues onward. 

Monday, May 5, 2014

Another hour long mini-flare...

I had about an hour this morning of itching and breaking open a few scabbed areas.  No new areas - just the same areas on my forearm near the wrist, back of neck around to the left side, and a little on the right ankle.  My hands were not affected and continue to heal nicely.  It did nothing to stop me from living life.  It actually reminds me of my eczema I had in grade school prior to TS use. 

A few more people have tested positive for the MTHFR gene mutation.  They are under the care of naturopathic doctors.  It has helped people to become aware of something they may never have found out about otherwise which is good considering how many health problems can be caused by this mutation.  I found a great article written by a pharmacist on really helps explain a lot.  It even mentions how alcohol puts a stop to methylation - wondering if that has anything to do with why people react so negatively to alcohol during TSW :

So today was a busy with the kids in the morning, then grocery shopping, then some puppy training, then baking some home made granola, then making dinner, and of course cleaning up.  I will squeeze in some exercise after writing this and then snuggling on the couch with hubby when he gets home from work.  Was outside in the sun today for about an hour - checking on the garden and dealing with a very rambunctious puppy!  She is easy to train but is still a handful.  I was sweating after only 20 minutes.  Not once did it dawn on me that I was sweating and not itching like mad!  Only thought about it now.  Amazing!  Also...I have very oily skin on the top of my back and I think I have pimples there!  Mind you I never had a pimple in my I will have to ask hubby when he gets home to look at it.  So weird though to feel oily skin.  It feels weird for lack of a better word.  But trust me when I say I'd rather have this than dry skin! 

As for pictures - still taking some here and there, but unable to find the USB cord to download the pictures on this computer.  I used to be able to plug in the memory card to the laptop but the laptop is being fixed.  And our home computer doesn't have a memory card slot (not one I can find).  I had a box of wires - it was in the dining room and I'm 99% sure my camera cord was in it.  But no one seems to know where it went.  I've looked for it at least 3-4 times and we don't have a big house.  Hoping no one threw it away - but then again with kids, nothing surprises me! 

Oh, BTW...I decided to look at cost savings for making my own granola as my kids love it so much.  For the same kind of organic bought:  $22.45 for all 3 kids....Home made: $4.41 for the same amount for all 3 kids.  And that's with buying a 2 lb bulk bag of organic oats.  If I bought a bigger package, the savings would be much more.  That's over $900 a year in savings on granola alone!  I plan on doing a lot of cost savings analysis on food this year as we are going on a very strict budget - even when I go back to work full time.  I am planning on saving over $5000 per year in food.  1/5 of the way there.  The next thing:  peaches.  My kids LOVE peaches but they are only in season for a short time.  We go through BAGS of frozen organic peaches.  I plan to find an organic peach orchard where we can pick our own and then freeze them ourselves.  I will have to factor in freezer bags and partial freezer energy, but I have a feeling I'll be saving at least $500 if not more.   Anyway, I plan to be moving on from this blog (only posting once every few weeks for updates) to my other blog on living a more simple life.  I will continue to keep this blog active for it to be a resource for anyone interested.  But I am way past the suffering and there's not much to blog on anymore.  The information is all here.  I plan on collecting the data on the MTHFR mutation and submitting it to the NEA - I will keep you all posted on any responses I receive back from them.  Thank you to everyone who got tested and making me aware of the results.  I pray those that tested positive find relief in treatment.  For those who tested negative - I pray you don't have one of the other not so common mutations that are not typically tested for.  These mutations can cause a host of medical problems - I pray I have begun to offset some of them for myself. 

Friday, May 2, 2014



Today is the grand opening!  It is a place where we welcome your thoughts and ideas - where we can engage in discussions and empower each other.  Below is part of our mission.  We invite you to register on the forum and become part of our active and engaging community! We are not here to compete with any other forums or websites.  It is our philosophy that the more websites and forums created on this topic, the more we can get the word out about this horrible condition. 


"At, our vision is to create a space for ideas, information, knowledge and people to confluence. Just like the progressive development of the wheel and the steam engine, we hope that someday, innovation beneficial to the eczema community can be achieved through the use of this space. We want to empower our readers through the content presented here, so that they can better their overall health and skin conditions. We want to engage in constructive discussions and debates on all topics presented, so that the quality of our knowledge improves collectively. We want our readers to contribute to our vision, so that we form a strong, cohesive and resourceful community."

Thursday, May 1, 2014

Definitions and Terminology

It has been a difficult thing to define certain terms during TSW.   What does it mean to be healed?  What is a flare?  These can be defined many different ways because people experience different intensities of symptoms. Plus not everyone experiences the exact same symptoms as everyone else. My original first 8 month long flare was day to day pain, intense itching, burning, redness, swelling, and lots of ooze. It started on my torso and arms and then moved to my face down my back and then all down my legs to the top of my feet. The only areas I remained clear were the bottom of my feet and my scalp.  I shed massive amounts of skin on a daily basis. Some days were worse and others better...I never got a full break as I was always flaring somewhere on my body. 90% of those 8 months I had a mostly full body flare.  10 percent was just a lessening in intensity of the flare.  My neck hurt so bad I couldn't drive.  Those 8 months were basically one long lesson in torture.

However since startng treatment for the gene mutation I no longer flare.  According to my definition of a flare, I have not had one for the last 6.5 months.  So I developed my own definition of what I call a micro flare. Or mini flare.  Basically I get itchy dry skin that breaks easily and takes a long time to heal. It is not body wide at all.  Typically it affects only 1 or 2 small areas of my body at a time.  I no longer ooze nor have any redness nor any swelling nor any pain. NOT AT ALL!!!  I dealt with dry itchy broken skin as a child with my eczema before ever using steroid creams.  Currently only 5 to 10 percent of my skin is dry and/or broken open. It doesn't burn or hurt. It's just dry.   It doesn't stop me from doing anything including exercise. The only thing it keeps me from is working full time. I have been out of work on a full time basis now for about 4 months because as a nurse in the ER I need to wash my hands way too many times in one day. The harsh soaps are the only soap I'm allowed to use. I can't bring my own. The soap makes most nurses' hands dry. But since my hands are still sensitive they break open easily after just 2 shifts in a week. Right now I'm at one shift a week. My hands remain in great condition. I want to keep them that way. I will increase my hours as my hands allow. But for now they start with the micro cracks after working 2 shifts so I will play it safe until I feel they are not so sensitive. I still have my kids doing dishes as I tried washing dishes a few weeks ago and after a few days I got the micro cracks again.  Oh well.

As for the term healed.  That's a tough one. Is it reasonable to think our skin after 30 years of TS use will be perfectly clear at some point?  Not sure.  I think we will always be prone to some sort of sensitive skin somewhere on our bodies.  For me I think it will be my hands. But I've abused my hands over many years of being a nurse.  And that is probably where I used the most potent steroids.

For me I plan to declare myself healed when my cycles of dry itching skin stop breaking my skin open. They're not huge breaks in my skin. Someone said that my skin looked all torn up. I find that comical. Obviously they never saw my previous pictures during my initial flare!  Now THAT was torn up skin. What I have now are broken dry patches.   About once a week or less I scratch enough to break open a scab or 2 and I bleed a little. That is about all that my skin does that interferes with my means I have to go find a tissue or a bandaid.  I could live with my skin the way it is now and never be bothered by it. That I think means I am healed in spirit. :)

So I guess use your own personal gauge to guide you in defining a flare or what it means to be healed.   As for me I'm almost there. I don't claim to be completely healed but I know I am close. I got my life back completely at 9 months and other than my hands reacting badly to the soap at work I have truly moved on. I can go outside and the wind doesn't irritate my neck. I don't shake and shiver from body temperature irregulation. I have no pain.  My clothes and sheets are dry each and every day.  I don't have to vacuum daily...just once a week like I used to do....maybe twice if the dog hair gets to be too much.  I can wear all my clothes....even pantyhose!  And none of it bothers me. I cleaned my car and no longer have skin flakes in it at all. I wake up and don't immediately dust any dead skin off of me.  I drink a glass of wine about twice a month and have no redness or get irritated by it.

So anyone can say my skin still looks bad in my pictures but maybe they're comparing it to normal perfect people. But even though it may still be dry and cracked in a few areas I at least can say I have my life back.  I did take pictures today but can't locate my USB cord to connect and download to my computer. Hopefully I will have them up by tomorrow.