Thursday, June 18, 2015

Almost 18 months - pic update

Short update, mostly pictures.

I saw a commercial the other day for a clinical trial on eczema. Most of us in TSW know about the biologic Dupilumab but there is another trial going on for Tralokinumab. I don't know exactly how they work but I think generally speaking they block the "inflammation" protein that causes eczema. I sent in my information because I thought why not get some info but the office is over an hour away and honestly Im too scared to participate in a study where the long term side effects are unknown. Especially since I want to get pregnant right after this is over. Plus Dr Rapaport thinks I'm halfway done with full functionality to return next year. So I dont want to trade in one problem for another. I've made it this far, I can do this.

Pics of the last month in rough chronological order:

Cheeks oozing after itch fest

So dry when flaring

Calm after a flare

Knees are the worst. I have to hop down the stairs like a one legged pirate.
 These last ones are from yesterday

Hands are SO dry and hurt most during and after baths

So that's what 1.5 years of TSW is looking like for me!

Sunday, June 14, 2015

17.5 months

What's new? Same old here. My skins been flaring, as usual. Sleep sucks, as usual. The only difference is I'm up NY for the next few months. This has pros and cons but the biggest are that it is cooler here than in Florida, though the sun is not a constant. So before I was taking sun every day whereas now I haven't been able to. Oh well, it is what it is.

The last flare put me on my ass so I reached out to Dr. Rapaport again. It's very easy to lose sight of the end game so I neeeded a bit of reassurance. Before I get to what he told me, I want to share that he is starting a blog! I think that will be an invaluable resource to those of us going throug TSW as well as spreading awareness. Very exciting. Anyways, I was worried that perhaps my TSW was a combination of Red Skin Syndrome and real eczema but Dr Rapaport assured me that is not the case. He reiterated that I will not have eczema once is is over but Im skeptical. He advised that I should be taking more baths and more sun. Since doing so, my skin has definitely improved. Despite the fact that he wants me to take immunosuppressants to finish out he TSW (I refused), his advice does always lead to an improvement in my skin. He also reassured me that all these swollen lymph nodes are totally normal. The thick skin on my hands, known as lichenification, is not TSW, he said, but a result of excessive scratching which totally makes sense since I use the rough skin on my wrists and hands to rub scratch rather than using my nails. Currently, the back of my legs are the biggest problem. The back of my knees up to my butt are scabby and trying to heal but become so tight and itchy that I rip off the scabs in order gain some mobility. It really hurts to walk. My hands have been quite bothersome as well. And of course, my face and neck are always a problem. Light oozing has returned if I scratch too much. But the sun and a bath usually dry me up nicely.

I'm still dealing with the Valium tapering as well. It is brutal. I always feel like death 2 days after I drop down. Only 5 mg to go, which I've read can be the most difficult. But then I will be done with these damn habit forming drugs and you better believe that I will NEVER take them again.

Will add pics to this post later on.

17 months!

I am SO glad this last flare is over. Even after my last post, I continued to flare until about a week ago. I honestly thought it would never end. It was the worst flare this year, for sure, but when I look back at pictures, it doesnt look all that bad. Same goes for my pre-TSW skin. I look back at pictures and wonder why I'm making myself suffer through all this because I looked normal. Then I remember I spent years trying to control my increasingly out-of-control eczema, trying different diets, spending lots of money on different doctors...Even before TSW, I was considered high maintenance due to all my special requirements. I was always hot so needed the a/c on blast, couldn't be outside for too long bc the sweat would irritate me, I often had to leave events because of an itch attack, could never bathe my son, etc. Even if I had wanted to continue using steroids, it wouldn't be an option. They did nothing for the last few years leading up to my withdrawal. Literally, nothing. So with my skin already being addicted, withdrawal was truly my only option. This is what I have to remember during my flares. And then as bad as my flare was, it died off just as quickly.