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!

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.

quick update - 16.5 months

Ive been flaring badly since my last post. Today is the first day my skin feels a bit calmer. Hopefully it continues. I don't know if this was your run of the mill tsw flare or if I flared because I ate gluten. Ugh. I didn't mean to and I'm so mad that I did (thought it was gluten free). I try to stay mostly paleo but it's not easy when you're out and especially if someone goes out of their way to get me something gluten free then I really cant turn it down! The last time I ate gluten was last summer and I flared SO BADLY but there were other potential contributing factors so I cant say definitively that it was the gluten that did it that time. This time I really think it is though. I itched like I havent itched in sooooo long. That bone deep itch that drives you crazy. And I cried, alot. These days I only cry bc of the valium withdrawal but this time I cried bc of my skin. My hubby made me start drinking my veggie juices again, this time with ginger added for its anti inflammatory effects. Maybe it helped? I dont know, all I know is I AM SICK OF THIS SHIT!!!

Almost 16 months TSW

I'm 5 days away from 16 months off topical corticosteroids. I'm flaring. And im sick. I'll start with the skin.

Skin has been hurting quite a bit. Specifically, behind my knees and my inner right ankle. My hands are also bad and my face has been very itchy. Rash has spread to my chest area and the folds of my stomach when I sit, as well as the folds of my elbows and upper legs. I know this is par for the course but it still sucks. 

My knees don't even look bad but they are the most painful right now for sure. It hurts to walk or extend/bend my legs. They look like plastic and the skin there is very thick. It feels like a really bad sunburn and I only get relief when I scratch it raw bc then it's not so tight and I have some mobility. So it's an ongoing cycle. 

I think my sleep needs are changing again. Lately I'm having a hard time waking up with the baby. Hubby has been getting him to let me sleep in a little. I was taking a nap every day but find that when I sleep in, I'm unable to nap (even though I feel dead tired). So I just lay in bed and rest while the baby naps.

I've also been sick lately. Not sure how to explain it because I'm not exactly sure what it is. I have about 10 swollen lymph nodes and the day after they popped up (about a week ago) I started feeling awful. I could barely move or do anything. It made me feel like I was back in the early throes of withdrawal which is super scary. No energy at all. I cried multiple times walking up the stairs because it took so much out of me. I think I'm feeling a bit better but the lymph nodes are still swollen and I still feel sick at night. Because of the timing that I always feel worse, it could be the valium withdrawal. Since my last post, I didn't taper at all because I was having such bad withdrawal symptoms. After doing a bunch of research, I realize (once again) that I likely got some bad information from my doctor. He said that I could alternate taking and not taking the valium every night until I stop taking it completely. That is what I did for the first 20 mg. I alternated 10 and 20mg until I dropped it down to 10 (probably over a month, maybe less). Apparently this is NOT the way to do it and doing it too fast can even lead to a more difficult withdrawal. One is supposed to drop 10% every week or so and I did this double, if not triple, speed. Additionally, one should never increase dosage after dropping it. So his "alternating" recommendation was completely wrong.When I brought in my own taper schedule based on research I found, he just said "Oh, this looks fine". Gee, thanks! He didn't even know that valium came in smaller doses than 10mg. Sigh. Nor did he ever warn me of any withdrawal effects that might occur. Why is it that if there is a small chance of a negative side effect, doctors don't see it necessary to disclose this information? Just because it's not the norm doesn't mean we shouldn't be warned or that it might not happen to us. Case in point: TSW!!! Grrr, anyway. I'm now tapering by 1 mg every other week as is the PROPER method. Hopefully this will alleviate some of the withdrawal symptoms but I won't hold my breath. With this schedule, I will be done tapering in October with the likelihood of lingering effects very high. If the rest of the valium withdrawal is anything like it has been so far, I will be pretty useless the next few months. I hate this!!! I just want to get on with my life already. 

Benzo withdrawal

Valium is a controlled substance I have been using to treat anxiety throughout this process (prescribed by a doctor of course). Now that the worst is (hopefully) behind me, I am weaning off all controlled substances. I was also on Vicodin and Gabapentin (not a controlled substance but had withdrawal effects nonetheless). Currently I'm at 10mg of Valium, down from 30 mg. I didn't really feel like posting about my skin (it's the same - up and down but generally nothing I cant deal with) but needed to post about this in case it might help someone else, as I was unable to find many people discussing this. I have found it SO difficult to withdraw from these medications. I thought that after withdrawal from topical steroids that nothing could possible compare. Boy was I wrong. This stuff really messes with your head. And body. Every single day, I experience severe anxiety, chest pain, nausea, depression, weakness, muscle aches, muscle spasms, brain fog, irritability, and just an overall sense of malaise. It comes and goes, as is normal with benzo withdrawal, so for the most part I deal with it by talking myself through it. I know its temporary but sometimes I just cry and cry, and hubby asks me if I want a valium or if I need to slow down the weaning process. No! I know he just hates to see me suffering but I also know that that would only prolong the whole process. And I don't think I could possibly take it any slower! So if you're going through TSW and considering using medication to cope, I would weigh the pros and cons. I don't know if I would have been able to get through the early stages without meds but if you think you can, I would definitely attempt to. Otherwise be prepared for another difficult withdrawal process.

On another note, I do seem to be healing within. I got my lab results back about 2 weeks ago. I am no longer in adrenal fatigue and my body is producing more cortisol. So I know my body has the capability of returning to normal if it is producing its own hormones after a lifetime of not really having to. Which is great news! Alternatively, I still and likely always will have Hashimoto's (a type of hypothyroidism). This sucks because one of the main symptoms of Hashimotos is fatigue, which has always been my biggest issue. I will remain hopeful, though, until I am done with TSW because I truly believe that most of my health issues are caused by the TSA (topical steroid addiction). Plus, I wake up naturally every morning by 8am which a year ago would have been unheard of. A year ago, I was lucky if I woke up by noon. I still wake up once a night for an hour but Im used to it. And I still need about an hour or so nap a day because I only get 6 hours of sleep at night. I imagine once I'm done weaning off the Valium, I will try to get on a normal sleep schedule. But based on what I've read, one can experience withdrawal effects for up to 6 weeks after complete cessation. So I won't be in a rush. 

Im still vitamin D deficient, as well as magnesium deficient. I still have leaky gut which is no surprise. The vitamin D deficiency on the other hand was a bit of a surprise considering how often I am in the sun. In south florida. Where the UV index is high. Oh well, supplement I will. 

Otherwise, all is well. My skin only drives me crazy occasionally. When I do have energy, I feel amazing and it's a little peak into what my future holds. Oh! On a personal note, my husband and I are embarking on a really exciting journey - we are building our dream home! Which is perfect timing because it should be done in about 2 years at which point I assume I'll be completely functional. Even if I'm not completely healed by then, as long as Im fully functional, I'll be happy. Plus, it'll be the perfect time to get rid of all my "eczema clothes" and lotions and potions that I've accumulated over the years. I can't wait to take a picture of all the crap I'll no longer need! Very exciting indeed. 

TSW Day 420

Another month gone by. I've been flaring on and off since December but nothing crazy. I had a great month around October/November and would probably say that was the peak (condition of my skin) of this whole process so far. Adding to the recent flares have been a few bouts of colds which seem to linger and never fully go away before another one attacks. I think my immune system is still suppressed, hence catching every single cold I come across. Additionally, detoxing off all the drugs I was taking is much more difficult than I thought it would be. I'm only posting today because I'm having a good day. Some days (or hours) Im incredibly sad and feel overcome with despair, while others I'm shocked by the sense of just feeling normal. My skin is super dry on good days; red, irritated, and itchy on bad. I rarely ooze and if I do, it's minimal. Rarely do baths burn like they once did. Truly the hardest part now is just waiting to live a normal life already. Its been over a year and there's so much I want to do! I'm sick of being home when I feel crappy and I'm sick of being tired all the time. When will the adrenals heal?? I just got some more bloodwork done, should hear results back later this week. Can't wait to see the results because the last round of bloodwork I did was at the very beginning of TSW. It was that doctor who told me to get off the topical steroids as I would never heal my eczema while suppressing the immune system. So I'm very interested to see how the results now will compare to the first ones. Will my adrenals have shown improvement? Will I still have leaky gut? Will I still have blood sugar issues?

My current regime includes getting around 30 minutes a day of sunshine, eating a healthy whole foods diet, taking probiotics and omega 3s, taking a nightly bath with no moisturizer, and trying to get 8-10 hours of sleep in a 24 hour period. That means I'm taking a nap on most days again. I usually get around 7 hours of sleep a night and then another 1-3 during the day, depending on if I'm flaring or not - I sleep much more when flaring. I still wake up once every night and then fall back asleep within 45 minutes. I am taking 20 mg of valium (10mg at bedtime, another 10mg when I wake up in the middle of the night) and alternating between 5mg of ambien and 5 mg of melatonin a night. Then I take 25 mg of benadryl (aka sleep aid) when I wake up in the middle of the night. I was at 30 mg of valium and 10 mg of ambien & melatonin so at least those have decreased. I'm waiting another 2 weeks to continue detoxing off valium because I have family coming in town and do not want to be a weepy mess when they're here. I'm fully off vicodin and gabapentin (hooray!) and let me tell you, that was not easy. I seriously considered checking into a rehab center for a few days, that's how bad I felt. And I took it slooooooow. I can't believe how much it affected me mentally given how slowly I decreased my dosage. But at least I'm more than halfway done detoxing! Anyway, below are 2 pics from yesterday. Nothing too bad, just shows the dryness. My worst areas are still behind the knees and top of wrists. 

I blew up the face pic bc its hard to see but my skin is very bumpy. Its almost like raised patches of dry skin

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