Another amazing story to share!

There is this 3 year old sweet boy who wants to be like other 3 years olds....laughing, playing, jumping, bugging his siblings, and so forth.  But God had other plans for him during his toddler years.  This little one suffered with eczema since the age of 6 weeks.  He also suffered with numerous food and other allergies (quite severe mind you).  Topical steroids were applied but the eczema only got worse over time.  This little one (AKA Bubba Fett) has an AMAZING mommy!  She went on long journeys, searching near and far to find a cure.  She couldn't stand watching her little one suffer so.  Finally in October 2013, she discovered ITSAN.  She finally realized what was happening...that the steroid creams themselves were making things worse!  She stopped the steroid cream applications and Bubba Fett went into topical steroid withdrawal.  Not only did he go through the ups and downs of this horrendous process, but his mommy had to deal with dismissive doctors who thought she was crazy to NOT put steroid creams all over her babe!  She describes the days on his blog: Topicalsteroiddependency.blogspot.com.   He has had good days and of course some pretty darn bad days. 

But his mommy did not stop there....oh no she did not!!  She wanted to make sure to continue to help him...finding answers for his numerous allergies, finding ways to help him cope with TSW, and overall just improving his health.  What a GREAT mommy this little one has!!  She has looked into the GAPS diet and other things.  Then she happened across the information I have been sharing about the MTHFR gene mutation.  She decided to start him on the active B supplements.  She had also been doing MW with him as well.  And I thought I would share the pictures she shared with me showing the difference in his skin 1 week into the supplements:

 

 

 

His mommy wanted to know if it was possible that the active B's could work that fast?  The answer is yes!  I went from barely existing to going back to work and feeling great in 2 weeks.  So yes it can work that fast!  He will still flare until the TSW is out of his system.  But hopefully he will be like me...having mini-flares that only last a very short time, being able to sleep soundly, having less itching and burning.  I pray this little one jumps right back into toddler-hood....running, jumping, playing, and of course bugging his siblings like all 3 year olds should!  

Many thanks to his mommy for allowing me to share his story and his pictures with my readers!  As for whether or not he has the gene mutation....testing has not yet been completed.  However given his many allergies from birth and his almost immediate response to the active B's, one can guess that he more than likely has the mutation.  His mom will keep me posted! 

As for all the other mommy's out there with little ones suffering with TSW - you are my heroes!!  I have 3 kids now ages 12, 11, and 8.  I cannot imagine watching any of them at ANY age go through such pain and suffering!  Your strength is like that of steel!  You stay up at all hours of the night with your little one, trying to ease the suffering.  You take care of the other members of your household, trying desperately to hold it together!  You have private moments of breaking down, but then pull yourself together to keep fighting the good fight!  I want you all to know you are warriors as well!  And all of you are in my thoughts and prayers as well as the ones suffering! 

15 MONTHS off topical steroids!!

Today marks 15 whole months off topical steroids!!  I never thought I would make it this far.  The first few months were so horrendous....each day agonizing pain stopped me in my tracks.  I remember thinking there was no way I would make it 6 months or a year or even 15 months.  It felt like time no longer existed.  I felt like TSW put me in a black hole where everything stopped and ceased to exist including myself.  Sounds pretty dark and depressing, right?  Well welcome to TSW!!!

But the end of the tunnel for me is near....the light is shining brightly!  I still have a little ways to go with my skin....dry skin patches here and there and the occasional mini-flare that affects maybe 0.5% of my body.  I haven't smelled the sick metallic odor of ooze in a long time.  I change my clothes and sheets like a normal person.  I vacuum once or twice a week like I normally did.  I am almost back to normal with my energy levels (although with life long eczema and other health problems, I really don't know what normal is).

The bottom line is 15 months in, I never expected to feel almost normal! I remember reading other people reporting being at 15 months and still suffering pretty bad.  I remember being scared that I would suffer for a pretty long time given my usage history.  People would  say that it wasn't too bad because the skin would flare for awhile, and then you would get a break.  Unfortunately my first 8 months saw no break.  I envied those that would catch a few weeks break and enjoy life until the next flare.  I figured I would just flare continuously until my skin decided to heal.   I had read of some people at 18 months who had had no break.  It scared me to no end to be like that,

So to be 15 months in and 90-95% healed feels AMAZING!!   I have not had a big flare since starting the gene therapy 6 months ago! I feel God has blessed me in so many ways!  I want to use that blessing to help others recover from topical steroid damage in a much shorter time with less intense symptoms.  I want to thank everyone who has gone to get tested for the MTHFR gene mutation and reported back to me!  Together we may change the course of TSW!  I truly feel great things are around the corner!

Healing Pictures

I was able to find my camera and took a quick few shots before heading out the door for our daughter's birthday celebration.   I have some before and after shots of my hands and left ankle.  Lots of healing taking place.  The before pictures were taken just over 2 weeks ago.  My hands are still very dry but doing so much better without putting anything on them.

UPDATE on skin and life!

A lot has been going on around here.  For anyone not familiar with my blog or has not kept up - here is a brief rundown on life for me:  My husband and I purchased 68-70 acres 3 years ago in Kentucky.   Our dream is to basically live off the land as much as possible.   For the last 5-6 years I have studied alternative medicine and nutrition due to my ever worsening "eczema" and health problems.  We have drastically changed our diet and have slowly become more healthy.  My kids used to get the average 2-3 colds/illnesses per year when they were younger, but now are rarely ever sick.  If they get a cold once a year, even that is a lot for them!  But anyway, my husband and I are both nurses....working as traveling nurses around the country the last 7.5 years.  We had planned to move to our property last year and start building a house and starting our small farm.  But alas, TSW had other plans for us.  So now with me back to work, we thought we could try going out there this spring.  We went there last week for interviews and to look for a place to rent or buy  near our property so we can get started.

The trip was a success in that we were offered jobs in a few places.  Unfortunately with  being off of work all last year, financially it may not yet be possible to move.   We are still discussing this and will decide soon, but it is possible we will continue to work here in NY for another 6 months or longer.  I would be upset if we don't make the move, but moving with less money would create its own stress.  So we will see....

As for my skin...doing GREAT!  I had a mini-flare on my neck and forearms while in Kentucky.  I am sure stress played a role!!  But it has started healing nicely already.  My hands continue to do really well! I tried to find my camera this morning to take pictures, but my camera for the moment is lost.  I have a lot of cleaning to do and re-organizing so I am sure I will find it soon!  Still itching more than usual at night, but sleeping decently with only 1.5 tabs of benadryl and nothing else.  My ankles  look wonderful!  They have been healing a lot recently.  My mini-flare on my belly button from over a  week ago has not healed well....I think it has something to do with wearing jeans and sitting down driving for such long stretches!  Hopefully it will heal this week.

As for how well things really are....here is a clue:  Hubby had to work Friday last week.  I left Friday morning for Kentucky and he was going to drive in on Saturday.  I took all 3 kids and 2 dogs.  I packed the truck myself with everything we were going to need for everyone.  It did NOT overwhelm me at all.  I was fully packed and ready to go Thursday afternoon.  I had cleaned out the fridge and made sure I had all contact information for our interviews.  I woke up at 6 am Friday and on the road by 6:30.  Our 2 dogs are long-haired German Shepherds.  One is 3 years old and acts like a teenager still.  And the other is a 4 month old puppy.    The first 15 minutes of the trip I spent yelling at the 3 yr old dog.  He whined like crazy!!  My husband has spoiled him rotten by always keeping his window down so he can stick his head out - even in the dead of winter....freezing the kids out!  It was 38 degrees out and there was no way I was rolling down any windows!  So he sat there whining like crazy!  I threatened to leave him on the side of the road, but he wasn't hearing me (haha!).  I then pulled over and decided he needed some training.  We use a prong collar for him for control at times.  He has super long hair and while the prong collar is meant to pinch the skin, it actually pinches his hair which he hates. So it is very effective without being cruel.  So I attached a leash to his prong collar and VOILA!  No more whining with only 2 small tugs on the leash!  It was a beautiful ride the rest of the way!!  He got greatly rewarded for this wonderful behavior and was a whole different dog in the car!  I think twice he nudged my arm to say "Hey it's been awhile since you last opened the window for me"...but other than that it was great!

So why am I telling you that story???  Because if you have TSW and are in the throws of despair from being in a bad flare, you can imagine that a trip like this would be entirely IMPOSSIBLE!!  There is no way I would have managed a 12  hour drive with 3 kids and 2 dogs by myself. Let alone unpacking at midnight and making sure everyone was fed and had  potty breaks, and dealing with whining from a dog no less!  I am telling you this so that you can visualize that life WILL go on and you WILL get better!!   That the little things that bother you today  will not bother you in the near future!  That you will focus on so many more things than your skin one day!  I will be 14 months into TSW soon....and doing amazing considering my usage history and significant physical problems I had (like liver problems and adrenal fatigue).

Hoping you are all doing well today!  If  not, please know you  will feel normal someday- hopefully someday really soon!

On an MTHFR gene Mission!

Well I am back home after a week long trip to Kentucky.  It was a wonderful time and full of things to ponder.  More on that later as not all decisions have been made yet.

My current mission other than getting back on the healthy eating bandwagon, getting my house in tip top shape, and getting my kids back involved in activities, is to do some deep research into the MTHFR genetic mutation issue!  So much has been said this last week on Facebook regarding this.  I knew eventually when more and more  people got tested and turned up positive, AND started seeing results with proper therapy, this whole issue would start exploding.  The explosion is starting.  While this is a wonderful thing, it has also made me aware of how little I know about the gene mutation.  I did a ton of reading on it when first diagnosed, but obviously not enough!! So I plan to make it my mission the next few weeks to become MUCH better informed on this very complex issue to make sure I am providing all the right information.  I just feel like there are some things I just still do not know about it and the supplements.  So I want to be able to give the best possible information to everyone!  

Stay tuned.....

Taking an online break...

Things here at home are pretty crazy busy...will catch everyone up on the details at some point....but just wanted to say I will be away from the online world for awhile.  Nothing bad...all good really!  But there are times when things are SO busy that I have to cut some things out of life for a bit.  The next few weeks are going to be one of those times!  I hope everyone is well and hanging in there!  I will check back sometime in the next few weeks.  At this moment I remain flare free and my skin is healing nicely on my neck and hands.  I pray it continues down this nice road it's on! :)

2 day mini-flare

Well the mini-flare struck again...coming and going over a 2 day period of time.  It consisted of itching for 10-15 minute stretches about every 6-8 hours and rotating between the  right side of my neck and the back of neck and 2 areas on my left forearm.  No oozing, redness, swelling, or pain. Just itching and re-opening of sores and creating scratch marks.  Two mornings in a row I woke up at 6 am to the intense itching but was able to get back to sleep within 30 minutes.   It seemed to last longer than recent mini-flares in the past few months but was no way a nuisance.  It was a minor blip is all and I think I know why it stayed for 2 days....it seemed to correlate with some really intense pelvic pain I had the other night that lasted for a few hours... a pain I know well which is associated with ovarian cysts.  I haven't had one in over 2 years, but knew exactly what it was!

Today...all seems well again.  No itching....just waiting now for the damage to heal.  I am very thankful it did not affect my hands or face....my hands are looking so good now!!!  I will try to take pictures tonight or tomorrow....life is pretty busy right now with all the packing! But wanted to keep my readers up to date even on the little things.  :)