Saturday, September 27, 2014

9 month anniversary

Four days ago was my 9 month anniversary. Sigh. I could've birthed a child by now! And that's what I should have been doing before TSW came and ruined my plans. I definitely thought the worst would be over by now but it seems I'm still in the thick of things. I have become a recluse with no desire to see anyone but my husband or son most of the time. I definitely feel depressed alot of days. Now I understand when I've read about others having suicidal thoughts. I'm not suicidal BUT I did have one really dark night when my husband was travelling recently. I was having a really bad night and thought how easy it would be to just take all my (narcotic) medications and fall asleep and not feel any pain. Of course I would never do such a thing because I actually have a great life all things considered. I just can't live it at the moment and that's beyond frustrating. I hope I don't scare any of my family of friends who may be reading this. But I need to be honest for the others going through tsw so they know they're not alone if they're going through a similar phase. Damn this thing!! I dream of life after tsw.

My symptoms this past month: itch has picked back up lately, face has been redder and oozing a lot more, my feet and knees are crazy itchy and painful, fingers have been splitting a lot so I go through about 20 band aids a day to keep them covered, and of course dry wrinkly skin. I have been wearing my clothes inside out because the seams bother me. Places like my wrist/forearm, where I tend to rip off a lot of skin when I scratch, I've been wrapping tightly with cotton cloth. I've found that compression helps the itch for me. Sleep is okay, still waking up once a night but haven't been able to fall asleep until around 3am every night and that's with all my sleep medications. I tend to get tired for a nap around 4pm but sometimes try not to nap at all in an attempt to go to sleep earlier. Doesn't work. I've also been really cranky and irritable lately. Like all the time. I think I'm just getting weary of dealing with this every day.

On the flip side, I've come across a lot of other people that have it way worse than me. I hate to say that I find this comforting. Misery love company and all. But it makes me grateful that I don't have it as bad. I was reading about a BABY who almost died from renal failure bc of all the damage the topical steroids had done. That baby has since healed!! Isn't that amazing?! From being in and out of hospitals for infection after infection and being labelled failure to thrive to becoming completely healthy with clear skin. All by just stopping use of topical steroids. Which reminds me, I'd like to share why I decided to do this. I'm sure I've written this before but I want to reiterate it more as a reminder to myself. Within the past 5 years, I noticed the steroids stopped working. I tried everything but my skin just kept getting worse. I was always really tired. Every once in a while I'd wake up with swollen eyes, which I now recognize as a sign of TSA (topical steroid addiction). When that happened, I probably hadn't used TS for a day and my body started going into withdrawal. I now am able to look back and see the signs. There were a lot of them, I just didn't know what they meant. Another one is the burning itch. That would happen every so often but again, I had no idea that it was anything other than eczema. Finally, when I started tsw by accident, I saw how the rebound affected my body and became angry. I was like "F these steroids!!" Because if that's what happens when I stopped using them, there was no way I was going to continue to subject myself to their poison. If I had continued using them, I'd still be dealing with my worsening eczema with no end in sight. I'd never be able to bathe my children, never be able to go outside and play ball bc the sweat makes me break out, never feel comfortable in my own skin. I'd live a life of constant fatigue and adrenal suppression all the while subjecting myself to other illnesses because of my lower immunity.  I'd always be sick! So... I look forward to a life WITH energy, skin that plays no role in my decision to do things, and being able to live a normal life.

Lately, I've been going back and forth between wanting to advocate and raise awareness about TSA/RSS (Red Skin Syndrome) to not wanting to even think about it. Those within our little community knows that the NEA (National Eczema Assoc.) has created a task force to "research and review" this disease. Unfortunately, there is no way it will come out in our favor. They have big corporate sponsors who produce guess what?? That's right, topical steroids. They've already stuck information about it under the "myths" section. Assholes. Because if the medical community doesn't accept this disease is real, then it will only continue to grow and get worse. I don't think it's a coincidence that adult eczema only became prevalent after the introduction of topical steroids in the 1950's. Remember when eczema was considered a childhood disease?

Anyway, I hope next month I will have some improvement to share. If not, I know that eventually I will. This WILL end. Oh! That reminds me. Dr. Rapaport cleared me for some sunshine! He said that the abrasion around my mouth seems to be superficial. So maybe I really will have some improvements to share next time! :) Pics below of the last few weeks.

And today! 


  1. I wanted to thank you for being brave enough to talk about having vaguely suicidal thoughts. I'm at about 7months and when it gets to much I just think how easy it would be to end it all. Of course I would never do that because I know there's an end to it all but sometimes it just seems never-ending. It's blogs like yours that pick me up when I'm at my worst. I hope you know how much you're helping others get through this ordeal. We will all heal and until then it's up to us to keep each other strong!

    1. Wow, you're so very welcome. Your comment brought tears to my eyes. It truly is so difficult going through this, even more than I could have imagined at the beginning. I'm also thankful for the community we have, between the blogs and itsan, because you're totally right- they keep us strong. If you ever need a pick me up, feel free to email me! We all need as much support as we can get.

  2. Have you tried Clofibrate? Your face looks similar to Bye Bye Steroid's... She used it and it cleared her open wounds on her face. May be worth a try.