Friday, August 30, 2013

My flares just go on and on....

I am not one of those fortunate enough to have telltale markers of a flare with breaks in between.  My flares are seem like one big flare that goes on and on with different levels of intensity.  I had a nice break a few weeks back that lasted about 1-2 weeks.  The thing is my skin never even cleared during that time.  I still had redness all over that dulled a bit but never went away.  I had a few areas that still gave me trouble with oozing on a daily basis, but compared to what I had been through, those small things were nothing.  The pain had subsided and I had tons of energy.  But of course the flaring resumed.  It creeped up on me - ever so slowly it got worse until BAM, I was back into full on flare mode - oozing skin, skin that just sloughed off at the smallest scratching or rubbing, and the pain all over.  About 2-3 days ago, it slowed down a bit and my skin started shedding (as opposed to sloughing)....I could scratch a bit without opening new areas.  My skin felt super tight and dry.  The pain was still there.  But yesterday and today I am back to the oozing - but not all over....however it is pretty widespread.  For example my fingers are oozing and sloughing along with my upper arms, but my forearms are still in the dry mode.  It's frustrating because I have no set pattern other than I get a break about 1-2 days after my period starts but it lasts now for only 2-3 days.  That week long break I had was so nice and much needed.  But I am depressed about spending the next 6 months in a constant state of flaring.  Of course no one knows how long anyone will be going through this TSW and how their journey will change or not change along the way, but so far my body as been pretty consistent.

I feel I am back at square one.  My neck and face are now flaring with everywhere else.  The top of my feet have begun to be affected.  The only place not flaring is my scalp.  I am praying it does not get affected at all.  I think if it spreads there, I will lose my mind completely.  I am cold all the time again.  I sometimes wonder if my skin has healed at all these past 6 months or is it continuing to get rid of the poison?  Will it ever heal?  Everyone says yes, including the rational part of my brain.  But damn, I have my doubts right now.  The ooze smell is making me sick right now.  I am sick and tired of my body.  It disgusts me at this moment.

The good news is my energy levels, while down from a few weeks ago, are still pretty good.  I have read 2 books in the past 3 weeks which is amazing considering I did not read one book in the first 5 months of TSW.  I am used to reading about a book a week on average.  I know I will get out of this funk soon and get up and do things.  The gluten free muffins I made for my kids and hubby were a big hit and all gone.  They are begging for more, so I will get up and make them.  2 months ago that would not have been possible.  I also have 5 scrub tops I am in the process of making.  They are all cut out and now it is time to sew them up.  My husband and I are both nurses....he has always had a hard time finding guy friendly scrub tops, so I make them for him.  He has Star Wars, Batman, Marine Corps tops that are now starting to fray from years of use.  He needs more so I am back to sewing.  At this precise moment in time I don't want to bake or sew.  I don't want to do anything.  But I know I will.  I know I will get through this TSW and come out a winner in the end.  I may have lost the race today, but I will win this war.

Hoping all you skin warriors out there are doing well!  I thank everyone for stopping by my blog and thanks to those leaving comments!  It cheers me up!  I apologize for not responding or reading other blogs at this time.  The past week or so has been difficult.  To Eden's mom:  I got Eden's email....I have to set up my girls with their own email accounts.  But they are excited to write to Eden soon!  


  1. Keep going Tracy, you're doing well. Sorry it is so difficult and rubbish. Hang on in there - six months in an amazing achievement. xxx

  2. Hey Tracy! We are both just past 6 months into this shit. I feel you. Being in a constant state of flare can be really taxing. Platitudes aside, stay strong!

    Every day is a day closer! Things should get much better by our next milestone - 1 year! All these would be but fleeting memories then!

  3. I want anyone going through TSW to get their thyroid and adrenal glands tested. They're both simple blood tests but the adrenal gland blood test is a fasting one. Low thyroid can mimic steroid withdrawal symptoms. I'm going to be taking a natural thyroid medication to help my low thyroid levels. Just wanted to let everyone know.