6 month pictures and toning things down...

At the end of this post will be pictures taken today - I am 6 months and 5 days into TSW - I had a nice 2 or so week break from my constant state of flaring, but am back to a full fledge flare.  I predicted this would happen when I went back on the clean eating diet - eating only natural organic foods the way God intended them to be eaten.  My philosophy is give the body the tools (nutrients) it needs to heal, the body will heal - in order to heal sometimes we have to get worse before we get better.  My face is pretty red here and there and will be very agitated on the right side and chin area at times.  My arms are a disaster again - swollen, oozing in a few spots, red, and agitated.  My legs are  splotchy red, a little swollen, and mad crazy itchy all over.  The back of my knees however seem to be a bit better and much less purple.  I am now getting the red itchy scaly rash in areas where it was not before - inside part of my left upper arm, my butt, and it's spreading on my hands.  My scalp remains untouched.  Not losing too much hair anymore.  Oil comes and goes with the hair - sometimes I get oil within 5 days, other times about 7.  I am only washing my hair once a week in hopes of it getting to produce some oil.  I am also limiting any lotions/salves on my skin to super painful areas and joints where my skin pulls and hurts with movement.  I use Vaseline for my legs and lower back.  I use shea butter for my face every 3-4 days.  And I use the emu oil on my hands and forearms.  They have gotten worse with this flare, but my left wrist is still much less red than the right - so my one month trial on the left wrist did do something!  My neck is complicated.  The back is about where it was before in flare mode.  The front of my neck is relatively clear, but has some growing dry itchy patches.  I sweat with exercise from the front of my neck and it really burns!  I get red irritated skin there after I work-out but it then clears in a few hours.  Same with the chest area.  I am really praying my neck is mostly healed and will not re-flare like it did before.  It was so bad in the first 3 -4 months I couldn't drive.  The pain was excruciating.  I do not want to go back there!  The pain in the rest of my body is manageable, but the skin in my neck was beyond sensitive.  I am hoping my body is healing in a top to bottom way.  That would mean my face and neck are almost in the clear. 

So that was a recap of what my skin is doing.  As for toning things down - I will be stepping away from this blog a bit more.  I was blogging nearly everyday.  The past few weeks I have really cut it back some.  I have seen many people who have TSW and blog, take some time away from the blogging and forum worlds in order to get a mental break from so much focus on the skin.  I can understand - I did the same thing with the forums around months 3-4.  I just couldn't deal with my own pain, let alone anyone else's.  It is a dark place to be for sure.  Then there are those who are mostly healed and are moving on with life.  I fall into that category to a point.  I am no where near healed.  I know this.  But about 2 weeks ago I "woke up". I have had a huge surge in energy and mental clarity.  It made me realize I was spending way too much time online than I was with my family.  I know I needed to focus on something other than my pain, and my fatigue was so severe I could barely make it through my days.  Sitting at the computer was sometimes an effort.  But the last 6 months not only have I been living a nightmare, but my kids and husband have suffered greatly with my indifference and severe lack of attention from me.  The last few weeks, I have really focused on listening to my kids and talking much more with my hubby.  My kids have really soaked up my attention - so much so it was painfully obvious just how neglectful I have been.  I met all their needs - food, shelter, clothing, and love.  But I was not able to do much with them.  My girls are on cloud 9 today.  I finally sat down to teach them how to sew.  They are 8 and 10 years old.  They have been begging me for the last year to teach them.  No time, no patience, then I got more sick with going through TSW.  Today I just took out some thread and needles and scraps of material.  WOW!!!  They have been sewing literally ALL day - only to break for chores and meals and school work.  They have not stopped thanking me.  As happy as it makes me, it also makes me cry in sadness that I have missed out on a lot of things with my kids because of my skin problem.  All last year my skin was getting worse and I was working and barely functioning.  So that is 1 1/2 years of missing out at least (not to mention the years I went through TSW without knowing it).  I am going to be eternally grateful to ITSAN and all the founders for their hard work and dedication to this cause.  I truly want to dedicate time as well, but that time is not now.  Now is the time I make amends to my family.  I may still be in a lot of pain and discomfort, but with my huge increase in energy, I need to take that and give it to my kids and hubby for now.  I will continue to blog about once a week - maybe a bit less.  But I will be praying for all of you warriors out there!  I will pray you find peace and strength to get through your journey.  I will pray that TSW becomes more acknowledged in the medical community so more people can heal.  I pray you find what works for you to get through the pain and suffering.  Hang in there as there IS a light at the end of this long, dark tunnel! 

 

Still splotchy and red but not as bad.  Notice the front of my neck is clear :)

 

Left arm - red and scaly and itchy

 

Right arm the same as left

 

Back of left arm - had bad "eczema" here for the 2 years leading up to TSW.

 

Right wrist - spreading up to crook of thumb and forefinger now. 

 

Left wrist in same lighting as right wrist above - much less red but still broken out.  Emu oil has done something here though!

 

Back of right knee - much less purple but my leg is now mostly red with splotchy areas.  Thinking I will be having "red pants" soon though!

 

Right leg - hard to see the redness here, but it's pretty much all red with a lot of scratches. 

 

Back of neck where it was a few months ago.

 

Right side of face a bit worse but still OK and tolerable.