Wednesday, November 27, 2013

100th Post and Feeling Different!

This will be my 100th post! Woo-hoo!  :)  Not sure why I find that exciting, but I figured I would just get that out there!  :)

OK, as to feeling different.  Going to have a tough time explaining this. I've tried for the last hour to think how to describe it, but still failed to really put a finger on it.  So I will start with what I do know...

I am itchy.  Sort of.  I was up most of the night itching and itching and itched all morning.  I actually did not eat until after noon because eating makes me itch and I couldn't comprehend itching more - even for just a few minutes!  Then I took a nap this evening...woke up not itching.  My skin feels weird.  It's dry, but soft at the same time.  Huh?  I told you this was hard.  There is a layer of dryness (though no flaking) on the top, but overall my skin feels soft to the touch.  I keep touching it trying to figure it out, but my skin has never felt this way!  If someone with "normal" skin touched my skin they might describe it as slightly rough.  I think anyway.  But even that is too harsh of a word.  But super soft it is not.  Weird, I know.

I am tired. Sort of.  Like I stated above, I had poor sleep last night.  The ND nurse said I would sleep really well my first night after the injection.  EVERYONE does is what she told me.  Ummmm, not everyone clearly!  I must be the reject!  :)  Seriously though it was a rough night. However, I did get up by 10 am and actually had enough energy to cook and go shopping.  I felt full of energy.  That is until 5 pm hit.  I literally passed out on the couch....slept for just over an hour.  The kids were looking at me, then ever so quietly asked if we could have dinner.  Huh??  I have to feed you guys again???  LOL!  I actually had the kids do most of the work as I was so exhausted!  Now I am back to having tons of energy!!  So bizarre!

My skin feels great.  Sort of. Overall it feels good...dry patches with recently broken skin (from all the scratching last night) actually look  like they are healing.  No pain.  But I still have those irritating areas on my neck that JUST WON'T GO AWAY!  So frustrating!  I can go to the store and do things around the house without thinking about doesn't bother me 24/7.  Just certain times throughout the day I just get the ice out because it just feels so irritated! While I see all this healing on my sores and scabs, the neck area has always been the one area that never seems to heal.  I have had weeks where it was clear, but that's it.  The majority of the last 9 months of TSW, no matter what part of my body was flaring, the neck was either flaring or irritated.

My thoughts:  all the itching since starting the supplements and just since yesterday with the injection I am thinking may be due to the detox effect.  Glutathione is required by all cells to clean the cells - a detoxifier if you will.  It gets severely depleted when one takes a lot of medications or become chronically ill.  By taking in more glutathione than the body has been making, it gives the body a boost in detoxification.  My thought is since the skin serves as an eliminator, it only makes sense (to me) that the body is releasing toxins into the skin (along with the other known elimination routes).  With toxins on the skin, itching makes sense.

Itching is one thing others who are taking these supplements say has increased.  And the oozing has decreased.  I only have a pool of 4-6 people here (not everyone is taking all the supplements...a few are taking 1-2).  So it seems we will need more time to determine if everyone else will go the same route of itching more, no ooze, no redness, and skin feeling stronger.

I still think the way to go here is to find out if I have this gene mutation.  Then try to find funding to test 20-50 TSW warriors for the same mutation.   The gene testing takes weeks to months for results.  If more people have significantly positive experiences with these supplements, then I may just try to do a study based on the supplements alone.  It may be that one does not have the gene mutation, but is still severely depleted in glutathione, hence helping their symptoms through TSW just by taking the supplements.   The next few weeks will tell.

BTW, I did not go get my testing done today....horrible weather here in the Northeast and I just had too much to do to get ready for Thanksgiving! Gobble,gobble!

On that note, Happy Thanksgiving!  I know personally I am thankful for finding out about TSW when I did. I truly believe it saved my life!  Many thanks to Loren (Kline's mom) for blogging about Kline's TSW journey - it was something she wrote on Facebook on a shared group we belong to that brought me to ITSAN.   I am thankful to them as well for bringing about the awareness of TSW to so many people!!!

I am also thankful for my extremely wonderful husband and children for helping me through this and putting smiles on their faces in light of the storm I had overhead for so many months!  They are my everything!  And also to the rest of my wonderful family - for their love and support and keeping it all real!


  1. Tracy thank you so much for blogging. I'm at the same time frame as you - 9 months off TS, and am a Mum of young children too so have really related to your blog.
    I've been really excited about your progress with the supplements - so much so its been keeping me awake! I just love the fact that you're a nurse and can therefore put your knowledge to use trying to figure out why we've ended up like this and how we can alleviate the pain whilst we heal. So have a great Thanksgiving Day - you certainly deserve it and I hope you continue to improve.

  2. I'll be glad to be one of the guinea pigs - for the cause of TSW!

    The simple emotion of "feeling great" is a great sign that you are healing. Many start to feel better before they get better physically. It will be great for all of us to hit the end of the road one day =)

  3. Thank you Amanda and Leslie!!! I am praying this is going to keep the bad flares at bay. I still itch and am dry, but what a difference not oozing makes. Also no longer having the redness and swelling and pain makes all the difference!!

  4. Gene mutation concept is so interesting! There are always some genetic studies being done at my college (ucla) I wonder if there is any way to get in on that