Doing Well, BUT....

OK, so I am well over  a week since needing a shot of steroids for my asthma - about 10 or 11 days.  A few days ago I had some dry itchy skin on my wrists and my first thought was oh no I'm going to flare!  But lo and behold it went away and was typical of my dry itchy skin I have had on and off this past year.  I have also been noticing my hives have not been bothering me - I used to get them daily since clearing up - so hives for well over a year was driving me mad.  But I was able to attribute most of them to food sensitivities.  If I ate dairy or gluten, I would get hives on my arms and chest like clockwork.

So overall my skin is doing great....so what's up with the BUT???  Well, as I wrote before, my asthma has been getting progressively worse.  I have seen a few doctors and am on non-steroidal medications but they are not the answer obviously.  My goal is to be off all meds!  But breathing is important to life!  And I have tried my hardest to find triggers.  But lately almost every time I eat, I have an asthma attack.  Basically I eat about twice a day and that's it.  It's getting ridiculous.  To top it off I have become exhausted on a daily basis again - no where near as bad as when in TSW, but it's bad enough I only have a few hours a day where I feel like I can get anything done.  I'm sure it's from coughing half the night away.  Here's where I'm at....my house has no basement, and no obvious mold problems, hardwoods throughout, 3 UV air cleaners, dust covers on mattress and pillows, dogs kept to one room or outside, and eating as clean and dairy/gluten free as possible.  Not sure what else to do except do a month long fast and go live in a bubble!  :)

In all seriousness though, I think I may have found a reason for my ongoing asthma.  It makes the most sense given how bad my symptoms are after eating.  I'm sure some of you have heard of leaky gut syndrome.  Either you think it's a definitive thing or believe it's quack science.  Either way I personally don't know enough nor have read enough of the science behind it to make a valid opinion.  But at the point I'm at, I'm willing to give the theory a go and make attempts to "heal my gut lining". This will be no easy task and requires me to be in the kitchen a bit more often - making bone broth and making fruit/veggie smoothies.  I already take probiotics, one of the main things for leaky gut.  And to be honest, I often sleep better when I take the probiotic at night (something I noticed twice last week).  There's so much more to this leaky gut thing and I need to do more research, but if our skin can turn into macerated flesh from the steroids, then it only makes sense our gut lining can do the same.

An FYI....the stuff I've been reading out there on leaky gut states it can cause allergies, asthma, skin conditions, auto-immune conditions and so forth - wondering if it's worth it for many of us in TSW to be more careful with what we eat.  Some say diet doesn't make a difference on their skin while others like me swear it makes a huge difference.  I think it's well worth looking into for overall health and well being, not just for our skin - and in my recent case of asthma.

Taking Steroids!

This is not what I wanted to do I swear!  But 6 months of my asthma bugging me and then in the last 2 weeks I went through an entire rescue inhaler.  I couldn't sleep due to constant wheezing and I couldn't figure out what was triggering me.  My asthma has only gotten worse as my skin as improved since last year.  But it was manageable.  Last week I woke up at 3 am and couldn't move any air at all.  I used 3 rescue breaths but nothing at first and in a panic I went for my epi pen.  But before I was able to give myself the epi, I was able to take in a straw's amount of air so I hit my inhaler like 8 or 9 more times in 2 minutes.  I should have called 911 at that point and gone to the hospital but my kids and I are here by ourselves as my hubby is 12 hours away working in another state for another 2 months.  We just moved here and the only people I know are our neighbors.  I'm sure they would have helped without a doubt but I didn't want to wake them up at 3 am.  So I went to urgent care in the morning and received a shot of decadron.  Not happy about it but I had no choice.  So far my breathing has been better which is a wonderful feeling!

That leads me though to the question of the day....what is going to happen to my skin now?  I'm not on any taper of prednisone as the doctor said the decadron will stay in my system for about a week and eventually taper off on its own.  Many people have remarked how taking steroids even 3 or 4 years out has caused a rebound flare.  But I am not so worried given I fixed my TSW in a different way - by treating the underlining cause of poor healing - my methylation genetic mutations.  My plan is to now get back on those previous supplements I no longer needed (glutathione, MSM powder and so forth).  I still take my active B's about 2-3 times a week as required for producing adequate glutathione on a maintenance basis, but if there is going to be a rebound flare then my body will need extra glutathione for healing.

So I will keep you all posted.  I've been doing so good for so long now skin wise.  I'll hit my 3 year TSW mark on Valentine's Day next month.  Praying for better healing of my asthma and no flares!

Finally settled at home!

The last few months of 2015 were beyond crazy - we had moved to Lexington, KY in August but due to problems with our new jobs we had to close up the house and go back to NY for 2 months to work to ensure finances were not too tight for the holidays.  Moving in itself was expensive so we just packed a few bags and ended up being split up.  Our kids stayed at my parents for 8 weeks in Rochester, I stayed at a friend's house in Albany and worked 2 months, and my hubby was in Binghamton sleeping in the truck (he refused to spend money on a hotel).   Anyway we were all about 2-3 hours away from each other and spent many hours on the road visiting each other.  We also got to spend some time visiting Christmas Village in PA and a few other sites.  It was stressful but not once did my skin act up!  However with that said I was still reacting to dairy and gluten - dry itchy skin on my arms and face and my asthma has kicked up to a whole new level.  Not sure why but I do notice I get difficulty breathing every time I was eating.

So that left hubby and I to make the decision for me to return to KY before Christmas (he came home for a week too) and to not work for at least 3 months.  I am spending this time on losing the weight I gained and get back to the all clean eating we were doing years ago.  No cheating, no excuses.  I seriously think my asthma is being triggered by a number of things but mostly the bad food I have been eating.  I am now on day 2 of my 100% clean eating.  Last week I spent cutting back and not buying any new bad food.  Also had to come off coffee for a a few weeks as my crutch is yummy sugary coffee creamer!

As for my skin, today its less itchy and I've had no hives for about a week.  I have not taken any antihistamines in about 4 or 5 days either and my itching continues to improve.  In the meantime I am reading up on all things regarding saving money and being more frugal.  I joined ibotta and I even joined Dietbet where you bet on yourself losing weight.  I joined one short term game and one 6 month game.  By putting down a few dollars I am now committed to sticking to my clean eating and losing this weight.  I am guaranteed all my money back as long as I lose the % of weight required.  I'm more determined than ever about getting my health back into tip top shape.

Praying everyone out there suffering can get some relief with this new year.  Keep reading and finding what will work for you!  Don't give up because life on the other side of TSW is AWESOME!

Continuing to be TSW Free!

Life is chaotic and crazy for us right now!  But the good news is TSW has not reared its ugly head once!  Still free of any ooze, redness, or swelling.  Once in a great while I'll get itchy and hives from sneaking either chocolate or dairy.  But otherwise if I stay away from them then my skin remains awesome.  I haven't found my camera in all this unpacking and re-packing business.  But I did download a photo from my phone from a few weeks ago.  We are busy busy busy!  Will write again when I have time to do a REAL catch up post!  Praying for all of you out there right now!  Keep those chins up and never give up!  Also look into the genetic testing PLEASE!  It saved me and so many from worse suffering.  It may not be everyone's answer but it is definitely worth looking into!

2.5 Year Update

Well I have not been very good at keeping up my blog and writing a big finale.  I have been meaning to but life just continues to be so busy!  I have been working over time and we are moving in 3 days to another state 12 hours away.  So my big end post will have to wait.

On August 14th, the day before my birthday was my 2.5 year mark of TSW.  I honestly do not believe I am in TSW nor have I been for over 6 months at least.  I now have noticed a direct correlation in the food I'm eating and my skin.  I had minor neck irritation for a few months with itching and some burning here and there where I felt the need for an ice pack at night.  When I discovered a month ago that I was allergic to chocolate and stopped ALL chocolate, my neck cleared in 3 days....completely.  No more itching or anything.  My forearms are still dry and itchy most days with a handful of open areas that take forever to heal.  Reminds me of my old eczema as there is no redness, swelling, or ooze to speak of.  But it itches whenever I eat dairy.  Due to the stress of work and moving, I just couldn't be strict with my diet.  I try but when my options are limited and I have no time to run to the store, then cheese is often somewhere in the meal.  I know once we move and I get strict, my skin will be perfectly clear.

My face is doing exceptionally well....so good that I actually have a pimple!  Geez...never had to deal with that before!  :)

The rest of me....well still have the weight on....I think my adrenals are stressed therefore affecting my liver and other hormones.  I think once we move and I have the means to really exercise then things might change.  But for now I am tired on my days off, but still able to get things done.

I have also been informed by another TSWer that there are other genes affecting our ability to heal.  Turns out I have some problems there as well.  Oh well....I will be visiting an awesome ND only 4 hours away from our new house who has the ability to help me with all this,  More to come on that!

For now I am off to do more packing!  :)

Changes are coming!

I've recently took a look at my blog and realized it is in need of some sprucing up!  Not exactly sure when I will get to this but hopefully soon!  Like I have said before I am changing my focus to another blog - one I will be keeping current on once we move and start working on our 68 acre homestead. My skin is no longer in need of constant care nor do I really focus on it anymore.  I still have issues on my hands but that goes with working as a nurse.  I did have a recent flare but I'll  get to that soon! I will be keeping this blog up for those that follow behind.  But I want to make it easy for those just starting out with TSW or those looking for answers.  I have not followed many going through TSW in quite some time except for a few FB groups I follow.  I find it harder and harder to see other's suffering.  It breaks my heart.  I also get very anxious when I see pictures now of those deep into suffering.  I am sure there is some element of PTSD here.  I completely understand why people leave the support groups when they are healed - it is so difficult to go back into the world of such pain and despair.  I will continue to be here however it will be in short doses.  I will of course continue to answer questions and emails.

Life is really good.  Just got back from Virginia Beach and had a fabulous time.  My skin loved the sun and the ocean!  I bought season passes to Six Flags for us and we went the other day to make sure we got the free parking for the season.  It was 85 degrees and sunny!  I had a few areas on my neck that were irritated from the sweating, but that was it.  We had a great time except for the roller coaster experience!  That was not a bright idea on my part to take my kids on when they have never been on one!  My 12 year old was screaming and crying to get off.  I felt so bad for her!  However she got over it quickly and all 3 kids declared no more rollercoasters for now.  The water park was not open but looks like so much fun!  Can't wait!

As for my recent flare....I ended up trying a raw milk diet.  I have read so many good things on it and have wanted to try it for quite some time.  But dairy has bothered my skin during TSW.  Well my skin was super clear the last month and I felt ready to try it.  Big mistake!  Within 3 days I was flared all over my face, chest, arms, and stomach.  It was very painful and I was very red and swollen.  I went back to my MSM powder and a few other supplements.  Within 24 hours of the MSM powder and stopping the milk and all dairy my pain was 50% better.  It's been about 2 weeks since my experiment and I am nearly back to being clear - no more redness or swelling at all.  Just some left over scabbing and itching.  Hoping to be all clear again soon!

For those that do not believe diet is a factor - all I can say is that for some of us, it is a huge factor!  I encourage anyone in TSW to at least give a dairy and gluten free diet a 30 day fair chance.  It takes a while for the body to clear the proteins from the dairy.

So stay tuned for my big change.  I will be posting an all inclusive way to deal with topical steroid addiction.  Hopefully it will be helpful to those dealing with this dreaded condition!

PICTURES!!!!

I am 2 days shy of my 26th month into TSW.  I am doing really really well!  I cannot state just how busy I have been with life - so busy that TSW has taken a serious back burner....other than a few posts on the FB support page, that is all I've done with regards to my skin!  The pictures I have are limited in regards to my skin as I just have not had time to even think about it.  The pictures I am sharing are from my vacation last week to Kentucky - where we own 68 acres and are planning to finally put a house on it and soon move there.  It was 80 degrees and humid!  My skin LOVED the weather there!  I feel so close to 100% healed!  I have a few spots of dry skin on my R hand and ring finger, some dry patches on my forearms and that's it folks!  Face, neck, chest, legs - all clear!  Take a look:

Taken 4/9/15 - neck and face all clear!

Me and my brother getting tipsy at a bar in Buffalo 2 weeks ago.  I had had 2 drinks by this point.

Me and my girls on 4/9/15 in KY at the Cracker Barrel

Me and hubby same day as above.

Me and my kids at Niagara Falls 2 weeks ago

Our future home spot - tire tracks will be our future driveway leading up to the top of the hill where our new house will be hopefully in 3-4 months!