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 it....it 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!

Some more good news!

Just wanted to share this quote from a good friend who is also suffering from TSW.  To keep things anonymous I am withholding any information that may point to their identity. Let's just say there has been a lot of suffering going on with this warrior!

"Tracy, I am glad I tried the MSM supplement.  I had my concerns about it in the beginning, since I have a sulfa allergy, but I have had no bad reaction to date.    In fact, things only seem to be better, and I would hate to go without it, now that I have tried it.  Within the first day, the ooze began drying.  At first, it was very uncomfortable as the drying ooze came out, and quite itchy too.  After a day or two, it was all positive.  The ooze has stayed under control, as long as I'm faithful with my dosing. I do still flare with hot, itchy, and sometimes weepy skin, but very minimal ooze, if any.  Much of my skin is drying and flaking, which I prefer over the ooze and wet feeling.  I believe this will help keep infections at bay as well.  I also went moisturizer free like you have, at the same time I started taking MSM powder.  I think I am benefiting from both approaches at the same time.  I have recommended MSM to my parents for joint pain and inflammation as well, which it is medically proven to help.  I would encourage anyone to check with their doctor or pharmacist about any drug contradictions with current medications, or present health conditions, if they have questions.  I don't know of any, but you must always stay in charge of your own personal health.  Tracy, I am thankful you shared this helpful wisdom!" 

So for anyone wanting to share their experience (good or bad) and remain anonymous, I am here for you!

IV Glutathione Day 1

I got back about an hour ago. Had a car full of groceries to unpack and dinner to get started.  But here I am to give my account.

First let me say that this morning was rough - a lot of itching - much more than I have had in 2 months!  My skin was tearing and bleeding.  I thought "Oh no...there will not be a spot for the nurse to put an IV!". I must note here that I had run out of the oral glutathione on Sunday so this was a possible reason for the increase in itching.  I was miserable and kept my ice pack on until ready to leave.  I then went shopping and running errands.  Made it to the ND office a few minutes early.

So I go in the back and the nurse has me sign a form - making me aware of side effects from the IV, not the glutathione itself - it states that no known side effects are known.  I then pick out the vein for the nurse (us nurses  make the WORST patients ever!!).  She literally had 2-3 cm to work  with around all the broken skin.  She was beyond sweet and kind about it!  Then the push takes 5 minutes, but she did it over 10 given I told her I am very sensitive to things.  Again she was beyond nice about my controlling behavior!

The pinch of the needle was nothing - she was good at it!  Then the glutathione itself made me feel funny in the head. Nothing major by any means!  It was a very slight lightheaded feeling only when she pushed it.  Afterwards I felt slightly nauseated driving home, but she did say that was normal and eating right beforehand helps.  Of course with all the errands I had to run I had eaten a few hours prior.  Getting home and eating took the nausea right away.

I do not expect miracles here by any means.  I must say though that the itching is already way down.  I of course started itching 10 minutes after eating like I always do.  But it died down in 2 minutes.  So weird how I  itch like that for such a short time each and every time I eat!  It definitely has helped me lose a few  pounds though....I no longer graze or eat unnecessarily as I hate this short burst of itching!  The food has to be way worth it!  :)

According to the nurse, the IV glutathione lasts about 72 hours in the body. I should have a peak effect tomorrow.  I will keep everyone posted!  I did get more of the oral stuff to start taking again in a few days.  I also have the script for the DNA testing - will call tomorrow for pricing and then determine whether to go tomorrow in the rain or wait til  next week.  Looking forward to knowing the results!  I will be very impatient waiting WEEKS!  Oh well, things like this are worth the time I suppose! :)

As for energy levels....this morning I felt much better than yesterday! I figured it had to do with working too much in a row.  But after the injection,  I must say I went up  another notch in energy.  I  feel like I could clean my whole house, make dinner, and even work on a few projects. I will however take it easy.  I have over done it in the past and I finally learned to pace myself.  So the kids are cleaning, I'm making dinner, and maybe I will pull out one project.  :)

OK, time to go!  I have some blogs and emails to catch up with.  Hope you are all having a better day today!!  

Barely lifting my head up...

I ended up working 3 twelve hour shifts in a row.  That was a mistake I will not be making anytime soon - at least until my adrenals return to some semblance of normal.  I was still going to go get the IV glutathione injection done today but the nurse was not available until tomorrow....I was actually thankful for this as I was too exhausted to drive.  I also made the mistake of not checking the calendar to see when THAT time of the month was going to be.  I ended up PMSing at work yesterday and crying 5 minutes before the end of my shift.  It was actually comical and a few people laughed - which helped me to just dry up the tears long enough until I got to my car and cried all the way home.  Even with all the stress, I only have 2 or 3 small new areas of open skin.  Still no oozing which I am VERY grateful for!  I do have some burning though on my neck that just won't go away....guessing it is from the stress.  I have 4 days off now so hopefully things will start feeling better in a day or 2.

My skin is still dry and open here and there....but it still does not keep me from doing anything.  I did a lot of research the  past few days on IV glutathione and the possible side effects.  I am actually praying this might be what I need to get past this stagnant phase. I'm not complaining by any means....life is great compared to earlier this year when I was couch-bound and couldn't function.  I feel like life is finally going on.  But my skin bothers me still to the point where I am somewhat uncomfortable on a daily basis.  I hate thinking about it.  I hate wearing turtlenecks everyday so the skin on my neck doesn't burn from the air.  Some days it doesn't, but I still wear a turtleneck to work every time I work just in case.

On the good side....the skin on my hands and wrists is so  close to being smooth!  All those thick scales are gone and it is now a very thin layer of dryness....much thinner than a few weeks ago.  There is no way to show this in pictures.  It is just a feeling I have.  Same with the bad dry patches I have had on my ankles and feet.  I also have smooth perfect skin behind my knees....I can walk without any pain at all.....I was just thinking yesterday just how awful it used to be just getting off the couch because of the severe pain I had behind my knees.

I have a lot to be thankful for!  But I will continue to persevere with finding something to help TSW.  If anything to help those behind me!!  It is a cruel existence for the time we suffer with it.

Well, off to make dinner - hoping to have the energy to load the dishwasher afterwards!  This fatigue is awful!  I pray it goes away by tomorrow and is only due to working so much in a row on top of PMSing!  BTW, I will be going to the ND office for 3:30pm tomorrow so I will not blog until later in the evening.  Will keep you all posted!  :)

Talk with the ND nurse....

First off, I only post 2 posts in a day when something exciting happens! 

Second, I want to apologize upfront to all my fellow bloggers and forums friends - I will be working the next 3 out of 4 days - all 12 hour shifts so I will be offline during that time I am sure.  I may pop in here and there to read up on how you are all doing, but please forgive me for not writing back or leaving comments over this weekend!  I love you all and want you to know I am keeping up with all of you!  I will do my best to respond to private emails - but please forgive me if I don't make it there either - this will be a test of my return to work! 

And third - the phone call that brightened my day...I got a call back from the ND's nurse as I called earlier today to ask for the genetic testing.  Yep - have a script to go get it done at lab corp.  I am without insurance for the next 4 weeks so I may or may not wait depending on the out of pocket cost.  Anyway, I spoke with her about getting more glutathione as I was running low.  I asked if I could take more than one a day - she said of course - some people take up to 6 a day.  Then I asked about the IV form as I had read about it the other day.  She said that was a good option for those who have taken a lot of medications over the years (hmmmm....like steroid creams???).  She said it gives the body a great flushing of toxins and people feel really good after having them.  They typically recommend those for people with the gene mutation and for those with a history of chronic fatigue and lyme disease.  I was afraid to ask how much.  But I was shocked (happily so) - $65 for the injection - takes all of 15 minutes total.  So I gave it some serious thought given I have had these mini-flares.  Nothing really - the worst was when my neck was red the other week.  It's still pink but it is also still very sensitive - along with a few spots on my left arm.  I am also having a hard time sleeping I think from coming down from the raw adrenal supplements.  I will talk to my husband about it, but given the low cost (in my opinion of course), and the nagging few areas, I may just go for one injection just to see if it somehow improves my skin overall.  Not holding out any hope as I am taking 4 supplements - but the glutathione is the end result - the one thing that the cells absolutely need to clean the cells of toxins.  A boost may be what I personally need to get over the nagging neck.  It sounds silly really as my skin is doing so very well, but honestly, my neck has been so sensitive for all 9 months of TSW and I really just want it to feel NORMAL!  I know I am asking too much here given my 30+ year usage and only being at the 9 month mark.  But if these supplements are the ticket for TSW then I would like to be more assured.  I have already researched the possible side effects (none known - except a slight flushing during the injection only). 

So if I do get it done, I will be going on Tuesday - when I go pick up the script for DNA testing.  I will even bring my camera so I can show what I look like being a guinea pig!  :)  The nurse told me she does these every week - so not a true guinea pig - but I will look at it as my own personal experiment for TSW.  For the weekend I will increase my oral dose to see if that makes a difference - if it does, then I will be even more convinced of getting the injection on Tuesday.  I do NOT like needles and I hate taking pills - even supplements.  I prefer to get things naturally.  But given all the years of damage caused by steroid creams, I am taking this approach to help push my body in the right direction.  As an ER nurse I put in a lot of IV's - I mean A LOT!!  I tell people to suck it up all the time (especially the men with tattoos who cry that they hate needles).  Yes, I am a mean nurse.  :)  But man I am stressing about a needle myself!  Ha, I crack myself up! 

OK, off to put laundry away and clean up dinner!  Then I plan to take a melatonin for sleep tonight.  Praying that helps! 

More good news to share and looking better by the day (pictures!)

I received this email last week and wanted to confirm with the recipient that I could paste it on my blog - I only changed the age of the TSW warrior as to protect  identity!  I may be willing to go out on a limb but I will always protect any and all identities - AND I would never paste any private emails on a public blog unless I received permission first.  So with great excitement, I will provide the email that gives some hope in my recent endeavor!

"hi tracy. today I read your post about supplements. I have a (X) years old in month (X) from TSW it has been very difficult , I haver tried some supplements with him with not much luck but last week I began sulfur ionic  form eidon ( very similar to MSM) and since that I noticed the oozing has stopped a lot, and the swollen also. he is in better mood, the itching is worst but the skin is improving. the other sup that i tried was vitamin E and it help soothing the skin but I think that he is more red when taking."

Just an FYI: this warrior is less than 6 months into TSW.  The bolding was added by me for emphasis!  As you can imagine, this has helped me to be more excited about all that I am working on.  There are a few other people who privately email me about starting the supplements as well.  It took me 7-10 days to see any improvement so maybe in a few weeks we will have more good news  - keeping my fingers crossed!

Going to personally get the testing done.  Already put a phone call into my ND today to find out about getting the gene testing.  I would try 23 and me but NY will not allow me to submit my DNA from NY state to an outside lab....silly NY (I have other choice words, but I try to keep those to myself!). Will keep you all posted!!!  If I test positive, then I plan to start asking for donations to have a number of TSW warriors be tested....I plan to put my money where my mouth is.  I will personally make a donation of $1000 to help with this.  I will petition genetic testing labs for a reduced price on that specific gene mutation.  It may reduce the costs significantly if we are only looking for one gene mutation.  I will also get a lawyer to draw up a release form stating anyone getting tested does so at their own risk (haha) and the results are to be interpreted only by their personal doctor.  And so forth. It will take 4-8 weeks for my own results to come in....in that time I am hoping to hear back from a few who have tried the supplements to see how they work.  Please keep in mind that with the variations in the gene mutation, the supplements needed may be slightly different....apparently a few of the other variations do not convert B6 and B12 into their active form as well as folic acid.  Could explain why many people end up getting B 12 shots. (Things that make me go hmmmmmm).

OK - was supposed to work today but did not sleep a wink last night so hubby went to work for me (he's so sweet).  I think I have taken Benadryl for too long and it just stopped working.  Hubby suggested I take one of his left over valiums (from his car accident).  Neither of us do well with heavy medications. So I tried 1/4 of 1 pill and was awake the whole night!  It made me feel awful!!!  Lesson learned! But even with no sleep my skin continues to look better! However I think my face looks a bit puffy.  :p

Left hand and arm looking better!

My face feels baby smooth!!!  Loving it!!!

Other than the slight dry patches, my feet feel baby smooth as well!!!

Thinking once those few sores are healed I may just go get waxed (instead of shaving) - waxing actually always kept the eczema off my legs as long as I went every 4-6 weeks. 

Other than some dry skin and left over sores, there is no redness at all on either arm - redness was always evident at the wrists. No more!  :)  (at least for right now - always the realist!)

Top of right hand and arm - just dry where my reptile skin used to be!  These are taken in the same lighting - same camera - and about the same time of day as the other pictures from the last few weeks.  

Interesting Information and Questions that need answering...

I have come across some VERY interesting information in the last few days.  Remember my theory about the rNA being damaged from the steroid creams and our bodies taking so very long to recover from TSA because our body has to remember the original rNA of the skin cells?  Well I (and my husband) may not have been too far off if this new information proves to be the cause of TSA.  You see, a dear friend of mine on the forums told me she had a gene mutation - methylation gene mutation to be exact.  She said she was told she needed things like MSM because of this (MSM is one of the 4 supplements my ND put me on).  So I did a little research and figured out that my ND was apparently treating me for this gene mutation.  According to my research, a significant number of people in this world have one of the 40 + types of this gene mutation.  There are 2 types that are most prevalent.  Many illnesses and chronic conditions are associated with this gene mutation including many auto-immune diseases like MS, fibromyalgia, and chronic fatigue.  Apparently this gene mutation causes the body to not convert folic acid into its active form and also not produce glutathione.  These are critical in the body for detoxification.  Without the ability to detoxify, our bodies then build up too many toxins, causing any number of illnesses. 

My question then is, how many of us suffering with TSA and TSW have this gene mutation?  If we all do, then taking these  4 supplements would be critical in detoxifying our bodies from the steroids.  It could also explain why moisturizing seems to be making some of us suffer worse - our bodies just cannot process even the simplest of ingredients on our skin.  It could also explain why diet appears to help some people - a cleaner diet means less toxins for our body to deal with and making it easier for the body to fight the other toxins already in our system. 

It could easily explain why some people get addicted to steroid creams and others do not.  I am beyond excited about all this information.  I just wish I knew how to go about getting a study done.  Maybe I will talk to my ND and see if we can't petition some university hospitals for funding.  We wouldn't even need much.  I do know getting a genetic test done through "23 and me" is $99.  Even if we did not get a discount, we would need $5000 to test 50 people.  25 people with known TSW and 25 people with eczema who do not appear to have topical steroid addiction.  Or we could test 50 people with known TSW and determine the type of mutation they have against the severity of their symptoms.  The 2 more common types of this gene mutation have a possible 4 different presentations - they range anywhere from your body being able to produce only 10% of the glutathione needed up to 60% depending on which form you have. 

I may not be explaining all this perfectly as I worked last night and am a bit tired today.  But I wanted to get the info out there so people can look it up themselves and determine if they should get tested and/or take the supplements to see if they help with the symptoms. 

I continue to do well skin wise.  I am still dry all over and itchy, but still NO OOZING or even any more redness.  I am working full time in a pretty stressful place and yet I only had that one mini-flare the other week that may have lasted a total of 2 weeks but is now gone.  I may be tired on my days off but I am still going out shopping and doing household chores and cooking healthy meals.  There is no way I would have been able to do this prior to starting the supplements.  I am now 75% convinced the supplements are reducing my TSW symptoms.  I still have not gone long enough without a big flare to make that a 100% determination.  Maybe 4-5 months out?  Not sure - I will wait and see what happens and continue to blog about my journey honestly.  I am not one to try to create false hope nor try to push people to do something I am doing.  I just want to help those suffering like I did....it was a very long 7-8 months of just hell.  I will not stop fighting this fight to help others.  Too many people have already suffered for so long.....it is time to try to end that suffering or at least bring it down a few notches!  :)