Sunday, February 14, 2016

3 Years TSW!!

Today is my 3 year TSW anniversary. I remember that day clearly.  I was researching something in regards to severe eczema not healing. I then went to my FB group on the GAPS diet and saw a post from Kline's mom regarding TSW.  I then went to her blog and spent well over an hour reading her entire blog and Kline's journey through TSW.  I remember feeling ecstatic thinking I just found the cause of my whole body eczema for most of my life.  I went into my bathroom and purse and bedroom and threw away every tube of steroid cream.  I remember one of my daughters found another tube and harshly threw it away. We were in the process of trying to buy a house 4 states away and planning to move in 6 months. But after going through more blogs, I just knew I was not going to be able to work nor was I going to be in any condition to move. Later that evening when my husband came home from work I tearfully told him about TSW.  I also reminded him of the few years after the birth of our 3rd child and how I was bed ridden because I had stopped steroid creams as they were no longer working.  At that time I had no idea I was withdrawing from the creams.  I later went back to them but those few years were hellish.

So we knew we were in for a very rough road.  We had no family in the immediate area and no one to help.  Thankfully our kids were older and able to manage the house and dog.  My husband picked up overtime and I started my horrific journey.  I was blessed though as I only suffered full body for the first 8 months. Mind you those were pretty bad months. But with my husband's insistence I went to see a naturopathic doctor and discovered I had the MTHFR gene mutation.   That changed the whole path of my TSW journey.  Up to that point I had had no clear moments; only a few better days.  With my previous experience of TSW I knew my body didn't have clear times.  But after starting treatment for the mutation, my skin went from full body flaring to only isolated areas of flaring.  I was able to go back to work here and there.  However since I'm a nurse, whenever my hands flared I was unable to work due to all the handwashing. But basically life was significantly better. It took time for me to feel comfortable in the heat and for the oozing to stop completely, but by my 2nd year anniversary I was almost completely through TSW.  This past year I have had some dry spots and irritation and tons of hives!!!  But 99% of that cleared up with a change in diet....no more dairy, gluten, or chocolate.  When I do cheat I get hives or itchy dry areas. Also I had a huge flare up in my asthma due to eating dairy and gluten around the holidays. I ended up needing a shot of steroids.  But thankfully had no skin issues when it wore off.  My doctor really wanted me on an inhaled steroid but I have refused.  I only use the albuterol as needed.  As long as I don't cheat on my diet then my asthma and my skin stay good.  I've really tried to stay in the TSW loop but it has been hard. I felt like I lost so much time with my kids and husband.   So 2015 was the year I got my life back.   It was crazy!  We finally moved to Kentucky and are planning to build a house on our 68 acres and start a farm.  We've had some things get in the way of our dream but we have persevered and so far things are moving along as they should.  

Below are some pictures of my skin currently and also of all the things I did in 2015 to play catch up with my family!


My hands are almost completely clear - here is a left over dry area from going off my diet.  



Inner arms are great - again one or two small dots from itching when eating bad.  


My neck along with my hands was one of my most painful areas.  My skin is wrinkly but completely clear!  As is my face, my ears, my legs, etc....


Having fun at Dave & Busters!  I would never have been able to go out in such a crowded public place in full TSW.


At Thatcher State Park in NY


Visiting Niagara Falls


It was cold at the Falls but still a lot of fun!  Again, would not have tolerated the very cold temps on raw skin during TSW.  


Visiting the Easter Bunny at the Broadway Market in Buffalo, NY


Visiting with my grandfather and aunt


Howe's Cave with my parents


Out drinking in Buffalo with my brother!  We were a bit tipsy!


Trip to our 68 acres in KY in April


Eating out at Cracker Barrel in KY with hubby and family


A trip to NC to see my sister and her 8 kids - here there are only 4 of hers and my 3


Goofing off with the cousins


Visiting Virginia Beach for a few days - my Dad and Mama Jo came from Richmond to visit with us


Walking the boardwalk in the evening


Loving the beach time!


My son being goofy at a rest stop in W. Virginia on yet another trip to KY in July


Picking blackberries on our property


My goodbye party at work where I worked on/off for 4 years


Visiting Watkins Glen in NY


Visiting with my brother, his girlfriend, and their new baby



Oh look!  Drinking again with my brother!  This time in Rochester


Visiting Fort Niagara


A summer visit to Niagara Falls!


Another visit with my grandfather and aunt!


Visiting with my in-laws!


Out at our neighbors having a bonfire in KY!


Visiting Letchworth State Park in NY


Me on our property doing some target practice.  


Seneca Park Zoo in Rochester 


Christmas Village in PA


The Christmas Museum also in PA


And our first Christmas in Kentucky!!


5 comments:

  1. Wow, your trip photos are entrancing. Thanks for this great share. We also had a fun-filled family trip last year and attended parties at couple of Chicago venues. It was just a great exploring experience and all of us had a wonderful time over there.

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  2. Jeez.... I happen to quit using them, but I only applied on the inner part of my elbows and knees. It's really inflamed.

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  3. Jeez.... I happen to quit using them, but I only applied on the inner part of my elbows and knees. It's really inflamed.

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  4. Please help. My daughter has been bed ridden for over two years now. She quit TS 19 months ago. I have tried countless ways to help ease her suffering and nothing is working. Diet changed, countless supplements, creams, gadgets,2 different naturopaths, 9 doctors of various specialties, nothing is helping her to improve. 4years of this itching and scratching and exhausted. She is only 23 years old and has no quality of life. She has completely isolated herself from family and friends because seeing people live normally is too much for her psychologically, although my husband and I visit every 4th day to wash her hair and bring food and do general cleaning. HOW DO I FIND OUT ABOUT MTHFR MUTATION? This has been an absolute ongoing nightmare. My own health has declined due to constant worry and grief. She's been having nightmares just about every night on top of everything else. She doesn't deserve this. She is honestly the most kind, compassionate, honest, gentle soul. She is my absolute favorite person. Please please please help me. Please. She has been suffering like this for far too long. I need to save her. My phone number is 253-208-4529. Sorry to be so desperate but I have nowhere to turn.

    ReplyDelete
  5. Please help. My daughter has been bed ridden for over two years now. She quit TS 19 months ago. I have tried countless ways to help ease her suffering and nothing is working. Diet changed, countless supplements, creams, gadgets,2 different naturopaths, 9 doctors of various specialties, nothing is helping her to improve. 4years of this itching and scratching and exhausted. She is only 23 years old and has no quality of life. She has completely isolated herself from family and friends because seeing people live normally is too much for her psychologically, although my husband and I visit every 4th day to wash her hair and bring food and do general cleaning. HOW DO I FIND OUT ABOUT MTHFR MUTATION? This has been an absolute ongoing nightmare. My own health has declined due to constant worry and grief. She's been having nightmares just about every night on top of everything else. She doesn't deserve this. She is honestly the most kind, compassionate, honest, gentle soul. She is my absolute favorite person. Please please please help me. Please. She has been suffering like this for far too long. I need to save her. My phone number is 253-208-4529. Sorry to be so desperate but I have nowhere to turn.

    ReplyDelete