Saturday, June 2, 2018

Best update EVER!

It's been awhile.... I've been busy working and getting our homestead established.  I've had the hives way less...maybe once a week at the most but still was having itching after every meal no matter what. My asthma is still just about non existent... used my inhaler a few times a month of that. The itching with every meal was really getting to me.  I tried the GAPS diet and eating paleo and all organic. I even did that 3 day fast.  But the itching was relentless.  I tried at least 6 different probiotics knowing all these issues were related to poor gut function. We won't even discuss the supplements I've tried.  Some would help for a bit and then seem to stop helping. My seasonal allergies were also out of control.  And the worse thing has been the ongoing almost crippling fatigue. 

I just want to add that I am completely free from TSW and have been for a few years. But the after issues were still bothersome on a daily basis.  I am however very grateful to be free of the pain and the ooze and the constant shedding of skin. I am so thankful to have my life back.  But I'm still not anywhere near where I want to be health wise and getting healthy kept eluding me.  I knew there was something more than my genetic mutations that were holding me back.  And I believe I found MY answer. This is what has helped me in as little as one month. I waited a month to write this as I wanted to make sure the changes were sticking and I have done nothing but get better. 

I now no longer itch after meals including dairy. I had tacos tonight and no itching. I'm about to have ice cream with no fear of itching. I still have some dry patches on my arms but they are almost gone. I have more energy than I've had in over 10 years.  My seasonal allergies are completely gone. We see pollen flying through the air and I have not had an allergy attack in 3 weeks. No more benadryl or claritin.  And I'm finally starting to lose weight without even trying. 

I'm clearing my body of heavy metals using TRS.  It helps rid the body of heavy metals safely so the body can actually function properly. A lot of heavy metals destroy the gut function and having the genetic mutations, my body cannot rid itself of these toxins. I couldn't figure out why I was getting worse since the new year... then it hit me... new house, new car and required to get the flu shot for my new job in January. My body just couldn't handle it all.  But after 4 weeks... I'm already transformed. I'm already working outside for HOURS not minutes. It's been my own personal miracle.   Now here is the catch... some with TSW who were no longer flaring would flare with this product. I personally believe it was due to the body just reacting to getting rid of all the extra yeast and viruses the toxins were attached to in the body.  I did not flare at all but did have headaches and foot pain.  But those have passed. I will continue this for the full 6 months and then take it on a maintenance basis. Even my kids are seeing changes.  My 2 daughters who both had hand eczema for years now have completely clear hands... and no their hands have not cleared up during the last few summers.

So here are some pictures:

My arm today

My neck a few days ago

My other arm today

My neck 4 months ago

My left arm 4 months ago

Sunday, February 18, 2018

5 Years TSW (2/14/2018)

This past Valentine's Day was my 5 year anniversary of TSW.  I thought I was completely healed of TSW definitely by the 3 year mark and only suffered chronic hives and asthma.  I have since cured the asthma I believe as no inhaler use in 2 months - no asthma attacks or shortness of breath - even when I go into the barn full of hay.  My chronic hives were on and off - more off lately since fixing the asthma.  My whole premise behind curing the asthma was getting my gut healthy again - which I have accomplished to a point - still think I have a lot of work to do in that area given I get the occasional hives about once or twice a week.  I really re-booted my gut recently with a 3 day water fast.  It seemed to make my skin worse, but after eating for a few days, my skin calmed down - but then flared again.  I can only assume this is an anniversary flare?  Of course this is still nothing close to the flares I had the first 2 years of TSW - still no oozing or surrounding redness (just redness at the sites of irritation).  I also have no significant swelling - maybe a little but nothing noticeable to anyone.  For the past week I've had burning itching skin on my neck, arms, and most of my back.  A little on my upper chest too.  I'm still on top of my supplements for leaky gut - l-glutamine, collagen, vitamin A and D, and slowly increasing my amount of probiotics I take each day.  I am also taking natural iodine as well as caprylic acid, magnesium, calcium, and milk thistle.  I had taken milk thistle years before I learned about TSW and it helped dramatically with the itching - but the one I was using (bought at the grocery store) wasn't doing a thing for my itching.  So I switched to Gaia herbs brand and WOW - my skin may still feel like it's burning, but seriously down 90% on the itch!  I can now sleep all night the last few nights compared to last week.  And the flare is still strong - my skin on my back can't be touched or it really hurts.  I can still shower but experience slight burning with the water. 

Overall, I think I'm getting somewhere finally with my health!  I have lost 10 lbs since the water fast and surprisingly have kept it off.  I stay away from corn and most gluten - although I do have some natural homemade einkorn bread from time to time which does not cause me to itch.  Before, eating anything caused me to itch!  But as of the last 3-4 days, I can eat without any itching.  I also do not think the milk thistle alone is responsible for the decrease in itching.  Last week I was doing some reading about leaky gut - the premise of the article was that due to vitamin A and D deficiency, we as a people eating poor foods in general lack a proper mucousal lining - the mucous lining of the gut specifically causing bad viruses and bacteria and yeast to create holes in the gut lining.  I started the high doses of vitamin A and D a week ago and everyone at home thought I was sick - the congestion and runny nose I had suggested I had a cold - but funny thing is I felt completely fine.  The increase in mucous lasted for the first 5-6 days but has gone down since.  I'll stay on the high doses for another week and then take them 2 or 3 times a week only.  I am also planning to add humic fulvic minerals that will help with mineral deficiency and also are known to help the gut lining.  They should be arriving tomorrow or Tuesday. 

And the best thing of getting healthier - THE ENERGY! Since my fast, I seem to have at least 50% more energy than normal.  I still have an occasional low energy day like Friday -all I wanted to do was sit around and do nothing - felt so drained - but the other days since last week have been full and I have felt great.  I plan to do a 3 day water fast at least once a month for this year - I truly believe it has kicked off some major gut healing for me.  In the meantime I will continue to eat as healthy as possible - no sugar, corn, and limited gluten.  And I have learned that eating healthy and TSW are not always directly linked - eating a pure diet will not fix TSW - BUT I do believe it has helped my body to heal other major areas making this recent flare very easy to deal with. 

For all those still struggling - please continue to seek out things that will work for you - fixing my gene mutations with proper supplements truly healed me way faster than expected and kept my flares to a bare minimum since starting the treatments.  Finding the root cause of the initial skin problem that started us on steroids is also crucial - in my case I believe it was leaky gut and poor diet since I was born.  That is not going to take overnight to fix, but so far I am seeing the most improvement in that area thanks to the fast and starting on the proper supplements.  Hang in there warriors!  The other side is SO AWESOME!  It is nice to be living life, working, and having fun with my family.  I've had more than TSW to contend with, but fixing these issues one at a time has been crucial to me living life at its fullest now. 

Saturday, February 3, 2018

Gut vacation Day 2

So my fast is going very well.  Have not been hungry surprisingly. I'm still itchy on my neck and arms but no hives today.  Last night before bed I got a bad itch attack on my back and it felt like hives but hard to tell.  My headache is gone and I feel more mentally clear. I'm still tired but able to get things done.  I was able to go into the kitchen and work with food without mental anguish. I guess for me, knowing I'm just going to itch if I eat really helps me not want to eat.  There was only one time I started craving food... my daughter made pasta and homemade meatballs which smelled amazing!! I wasn't tempted to break my fast, but the smell got some cravings going!!

All in all this fast is going well.  My goal was 3 days but after all the reading I've been doing, I'm very tempted to make this a long fast... anywhere from 10 days to 3 weeks depending on how I feel.  My only concern is work. Working a 12 hour shift will be tough during a fast but thankfully I'm no longer working in the emergency room.  I'm now working in a small community hospital labor and delivery. It is significantly less stressful and I have more time to sit and chart.  So doing a fast now and working may not be too bad.  Going to increase my activity tomorrow and Monday and see how I do.  If I get too dizzy or foggy brained then I know I won't be able to work during a fast and will have to plan a week off this spring for a longer fast.

The good news is I am already in ketosis.  So any major hunger problems are hopefully behind me.  However some say the 3rd day is the toughest while others say the 2nd day is the worst.  I guess we'll see how tomorrow goes for me!  Oh by the way I'm also doing oil pulling with coconut oil as my mouth feels gross.  The oil pulling and then brushing made my mouth feel very clean opposed to just brushing alone.

Friday, February 2, 2018

Fasting for healing -POST TSW!

At nearly 5 years TSW, I feel the need to fast.  I wanted to fast my first few years of TSW but knew it would be too dangerous as our bodies are in bad shape.  Fasting is known to cure health problems but being ill when doing a fast can be fatal.  I have lingering hives and itching that comes and goes.  Some things and certain diets helped but only short term. I feel my gut needs a break from work in order to heal itself.  I see this as anyone taking a vacation from work to rest their soul and mind. 

My gut's vacation started last evening.  My last food was around 7 pm.  Today I feel awful. I'm a coffee drinker so I got the caffeine withdrawal headache going on and I feel drained.  No issue with hunger today which means tomorrow will be pretty rough. They say the first 2 days are the worst.  My itching is down by over 50% and no hives today.   I'm flared on my neck and face and arms from recent probiotics and kefir.  Thought I had a dairy problem but I'm learning it's an intolerance to probiotics which is bad because probiotics is supposed to help with healing not make things worse.  Oh well... I will see how I do tomorrow.

Friday, January 12, 2018

Healing Takes Time BUT....

I have been seeing quite a few posts on people suffering terribly 2, 3, and even 4 years out after starting TSW.  This makes me upset and sad as I truly believe there is a way to lessen the suffering and aid the body in healing.  I still believe most people with TSW suffer from a genetic mutation that inhibits glutathione production.  Glutathione is ESSENTIAL for cellular healing.  Without enough of it, we cannot possibly heal from the years of damage topical steroids caused us.  I used topical steroids for 30 years in all strengths and all over the body.  My TSW the first 8 months was agonizing, painful, and caused me to not be able to work and most days not get out of bed.  I went to a naturopath that discovered I had serious genetic mutations like MTHFR.  He immediately started me on intravenous glutathione.  Within 2 weeks I was able to return to work and I had my life back!  At the same time, I also started moisturizer withdrawal as some of the mutations I had prevented my body from properly breaking down chemicals - so I was reacting badly to all the chemicals in the lotions and creams.  Even the natural ones, my body still had a hard time processing.  So the combo of moisturizer withdrawal and glutathione I believe was a lifesaver.  I also took large doses (15-20 grams daily) of MSM powder which I noticed was crucial in drying up the ooze. 

I just came off a month long flare after almost 5 years TSW.  I started on oral glutathione (1000 mg twice daily) and 4-5 half mouthfuls of colloidal silver daily which was crucial for me to not itch so bad and reduce the flare's intensity.  If I skipped a few days, the itching got worse and so did the burning.  But it is now on its way out the door and I never missed a day of work during this flare as it was no where near as bad as my original flaring. 

As for the colloidal silver- it is a natural antibacterial, antiviral, and antifungal product.  There are enough studies out there that show steroids cause an increase in fungal infections in people.  I do not think this is any different for people who apply steroids.  After 30 years of use, I suspected I had a fungal (or candida) overgrowth throughout my body.  I take colloidal silver about once or twice a year for at least a month long in order to help fight the candida.  This is also a crucial step in helping a lot of people with fungal or viral infections that people with TSW get.  Everyone should definitely do their own research on taking colloidal silver internally.  I did at least 6 months of research on this years ago before I ever took it - I felt it was safe for me and have never experienced any side effects from it.  In fact my most recent use of it seems to have cured my asthma and chronic hives.  I have always used Sovereign Silver brand - but recently tried another brand and my asthma returned.  So I do believe the brands make a difference. 

While I used other supplements during my healing, I believe that if anyone with ongoing bad TSW would try the following, I believe they have a decent chance of getting some relief during their flares.  So many people have already found relief with supplements for their genetic mutations - but I'm a realist and know that the testing and seeing a naturopath are super expensive and we have all tried so many products. 

1.  Moisturizer withdrawal - this is painful the first week - I know because I went through it - but the benefits are worth it.  Try one area at a time if needed.  But keeping the skin clogged with products (natural or not) does not give it a chance to heal and breathe.
2.  Glutathione - research this first.  It should not be taken for longer than a month without a break (1- 2 weeks) so your body does not become dependent on it and stop producing its own.  I took 1000 mg twice a day for my recent flare and that seemed enough.  Make sure to research safe doses.
3.  Sovereign Silver - again research this before trying.  I found taking half a mouthful 4-5 times a day for a month was super beneficial. 
4.  MSM powder - I started at 3 grams a day and worked up to the max of 20 grams a day divided into 2 or 3 doses to stop the oozing during my initial flares.  Did not ooze with this recent flare so have not taken it in last 3 years. 

These products were easily found on Amazon for decent prices.  The most expensive was the silver, but since it has fixed my asthma, I find it well worth it.  I know we should not be giving out advice for TSW as so many have tried so many things only to be disappointed.  However I have done so much extensive research on TSW and these products.  I feel as if we have  a way to at least get a little bit of a break from the more painful symptoms by aiding the body in what it is missing. 

Friday, January 5, 2018

Almost 5 Years AND..... A FLARE!

Hello all fellow TSW folks!  It has been over 5 months since I last wrote... it has been quite a last half of 2017! We moved into our new house on our 68 acres in Kentucky beginning of August.  It was a rough few months after that as one thing after another seemed to fall apart... all NEW things mind you!  We had a septic pipe burst, a cistern that leaked, a well that was producing both water and gas, and numerous other failures in the house (like air conditioning during 90 degree weather).  To top it all off, I ended up in the hospital for severe female bleeding that required me getting 3 blood transfusions back to back.  All of this went on while my husband was working in NY to pay for all this.  He kept insisting on coming home after everything kept going wrong, but I told him I had this!  And I did - even the over night stay in the hospital - the kids were fine as they were used to me working 3 nights a week so they are self sufficient at this point.  All through this stress, not a single flare!  Skin stayed good and I even figured out how to fix my asthma and chronic hives (healing the gut by starting off with months long use of colloidal silver and then high dose probiotics).  

So where does the flare fit in to all this? Right after Thanksgiving, when all was finally settling into place and things stopped breaking....I was at work one night and felt this sudden heat on my face with a prickly, itchy sensation.  And I just knew right then and there I was starting a flare - don't know how I knew as I don't recall other flares starting in the same fashion.  However, my face was very red and everyone at worked kept asking me if I was OK.  It went away within a few hours.  But then I started with some on and off itching on my face, neck, and arms.  It was small at first and the itching episodes would last about 1- 5 minutes at a time.  But it was the CRAZY all consuming itch of TSW!  I was a bit nervous and a whole lot pissed off!  I have not had any major flares since 8 months into TSW when I started the glutathione IV injections and other supplements for my gene mutations.  I had had what I called mini flares - flaring in one area of my body only - one arm, the neck, the hands, etc.  But here I was nearly 5 years TSW (anniversary is Valentine's Day), and I was flaring on my face, neck and arms all at once.  BUT, and here's the big but....it was not a repeat of my initial flares by any means!  Here is what my initial flares comprised of: Itching, Burning, Swelling, Redness, Oozing, and Macerated skin.  This flare is limited to: Itching, Burning, and (slight) Swelling. Not a drop of ooze, no further redness past that initial facial redness, and no macerated skin.  When I scratch, my skin does not just fall apart - I end up with sores all over, but the skin in between the sores is very much intact and not even red.  This is a far cry from what my initial flaring was like and is in no way shape or form unmanageable.  I have had about 6 or 7 nights of having to sleep with an ice pack on my neck for comfort.  Otherwise, I tolerate the itching episodes just fine and the small amount of swelling I have is not an issue.  The burning is also tolerable and goes away completely if I take some ibuprofen.  

This flare is still ongoing and has ever so slowly moved on down to my chest, abdomen, back, and now legs.  My neck still has slight itching here and there with a few scabs, but no longer any burning.  My arms are the same and need to heal still.  Most of my itching is now on my back and legs.  But I do believe the itching would be way worse if I had not started back on my glutathione pills.  I skipped a few days in December when things got crazy for the holidays, and my itching was way more intense.  Glutathione and probiotics are the only supplements I am currently taking.  I have just started my new year's healthy eating diet this past week and plan to throw in some diatomaceous earth just to help knock out the candida I know I've been fighting all these years (due to 30 years of topical steroid use - steroids weaken the immune system and candida is an opportunistic yeast that will take over - which was probably the main cause of my asthma and chronic hives).  

I haven't taken any pictures for lack of time.  Plus there really is not much to see... just a bunch of sores in various stages of healing.  Life continues to go on and I have not slowed down too much because of this flare.  Maybe a few days I was more tired than normal from itching during the night, but I no longer wake up to itching as long as I keep on my supplements.  Also I have had a 24 hour stomach bug right before Christmas, and now am getting over the flu.  So being tired is more likely from being ill than from this flare. Also my flare was not worsened by being ill which is a good thing I might add!

The rest of my life is truly amazing!  My hubby came to Kentucky right before Christmas and found a full time job 40 minutes away at the same place I will be working!  I have left ER nursing as of last week and starting Monday I start orientation as a labor and delivery nurse - I feel after 20 years of nursing, I need some positives in my work day!  Our farm is coming along... we have 18 guinea hens free ranging all over our property, 18 chickens that will be ready to lay eggs in another month or 2, and garlic planted.  FYI - the chickens are free range as well.  We finally have the gas leak fixed in our well and now have fresh well water!  I truly feel blessed in life - TSW was a horrible thing to go through, but being on the other side (even with a minor flare), I feel like I have my whole life ahead of me.  I no longer have to suffer and wonder why my skin was always falling apart.  I have the reason and the tools necessary to fight this and get rid of it.  It no longer controls me - life is moving on and upwards!

If you have any interest in seeing what homesteading is like for beginners (us), you can check out our FB page that has lots of pictures and videos.  We are having so much fun, we needed to share with our family and friends and of course, the rest of the world!  

https://www.facebook.com/scarpullafamily/?view_public_for=867519259981333

Everyone still going through the harsh times of TSW - keep at it - it does get better!  Do not lose hope as the future is bright indeed!

Thursday, July 27, 2017

A NEW CHAPTER HAS BEGUN!

So I posted yesterday about us moving and life being crazy busy and my skin is doing awesome!  But I wanted to share this next new chapter in my life because we have had to put it off due to my TSW which I started over 4 years ago.  About 6 years ago we bought 68 acres in Kentucky and wanted to build a home and start a homestead - we wanted to live more naturally.  Well we had plans t o move there in 2013 - but that Valentine's Day is when I learned about TSW and immediately (without hesitation at all) threw away every last tube of cortisone cream I owned.  My husband was behind me 100% even though we both knew we were putting our dreams on hold.  We knew I would not be able to work for an extended period of time and he would be stuck working over time just to make ends meet so I could heal.  We had to forget building our home and moving.  But here we are now.... ready to move into our new house on our 68 acres!!!! We move in 2 days!!!!  Of course we may be without electricity for a few days as the power company has been tied up with recent storm damage.  But this new chapter is beginning for us!  And it really hit home when I got the 8 am phone call that our keets were in (baby guinea hens).  I had wanted us to already be moved into our new place, but delays kept happening and the keets were already ordered months ago.  I will post pictures and videos of them soon.  But for now, here is the link to our very first video introducing us and our new homestead.

https://youtu.be/VvRak9rcx1M

You will see in the video that my skin is clear.  I look tired as I'm currently working nights and that has taken a toll on me.  But I am so happy that we are finally here!!!!