29.5 months - picture update

Hi everyone. It's been a long time since my last post! Not much has changed. I've had 2 *major* flares since my last post, with the regular up and down flaring in between. I think I actually went downhill like the day after my last post in which I said I was doing so well!! Of course, right?

Flare #1 was awful, obviously. Couldn't walk for weeks. Literally hobbled around with my legs permanently bent so as not to stretch or further bend the skin behind my knees. It was the classic, thick, tsw "elephant skin" that is so painful. I couldn't sleep either because I'm already a light and disrupted sleeper without any pain. Add in the inability to move my legs while sleeping and I was a mess. The pain behind my knees had been building for a while. Weeks, maybe months. So even though I practice moisturizer withdrawal, I had begun to use neosporin sparingly. This once a day reprieve turned into a multiple time a day application. Essentially, I was using the neosporin as moisturizer. As soon as I made the connection and stopped is when I went into full blown flare back there. Coincidence? Maybe. But I've stopped using neosporin for good now. I have to admit, the flare looked quite reminiscent of when I went through moisturizer withdrawal the first time.  Just the way the striations in the skin looked. So gross. Pictures below.

The rest of me was flaring as well but I was pretty focused on my knees. Lots of painful little cracks in my hands, neck and bottom lip. My bottom lip is still cracked (2 months later) but my hand cracks are finally closing up. I should also mention that AS USUAL after this crazy ass flare, my knees then were at the best point theyve been in over a year. They've since gotten worse but there was literally a day that I thought they might heal for good. Silly, optimistic me.

Look at that beautiful skin! It felt like REAL skin.

Now I'm flaring again. Actually this flare is starting to die down but it was a doozy. More of a full body flare. I joined the facebook tsw support group a while ago but I feel bad posting there. The few times I have, obviously when I was in a bad state, people ask me how far along I am and when they find out they kind of freak out. Like "you're still THAT bad at 29 months?!" Yes sirree, Bob!  Anyway, more pictures below of this current flare.

So here I am at almost 2.5 years TSW. Still very much in this. I do believe that I have other health issues going on in my body that are slowing me down. There's no other reason for people who have used steroids for a longer time than myself to be healed already while I still suffer. There has to be something else going on. I refuse to just wait the allotted time frame given by Dr Rapaport (1 - 4 years based on my usage) and then try to figure out what's going on if Im still suffering after 4 years. Everyone around me keeps saying "aren't you trying too many things? why dont you just let your body heal and when you're done with tsw, figure out what is left?" NO. Like I said, I absolutely refuse. I cannot go through this horror for another year OR MORE and not try to figure out what else is wrong. The body is one unit. One thing will not heal if there is something else holding it back. The body can only expend so much energy healing and it will make priorities. Therefore, if my skin is not the priority, what is?! I have tried every possible traditional method. I have seen dermatologists, allergists, functional medicine doctors, immunologists... they can provide no further help at this point, other than monitoring for infection and giving me prescriptions. As it is, every time I see a doctor, they just want to run labs and treat those numbers. Even my new functional medicine doctor is a symptom treater, rather than truly trying to get to the bottom of whats wrong. Sugar problems? Lets try Metformin! Can't sleep? Take more melatonin. I mentioned that I'm *still* lactating at almost 4 years postpartum. That's not normal?! Gyno didn't care, said to stop squeezing my nipples and I wont see the milk. Great! But that doesn't answer why I'm lactating in the first place. And I'm not actually squeezing my nipples, I'm scratching them off and that's when I see it. Then the functional doctor told me "I'm going to be honest and tell you that I'm not going to look into that." Another great response! (Do you sense my sarcasm?) I really should go back to my first functional medicine doctor, she was way better (more crunchy and open-minded - she was the one that told me to stop the topical steroids in the first place!) Regardless, my experience with the medical system is all the same. They treat numbers on lab reports rather than the person. Every single lab I've had done indicates an infection. But I don't have one! At least not a visible skin infection. But what do the doctors want to do? Treat it with antibiotics. No thanks! Why? So that if I were to come down with an actual infection, that antibiotic would likely not work and I'd have to keep climbing that medicine ladder and pray to god it didnt end in MRSA or herpeticum. Again, no thanks. Even Dr Rapaport confirmed that would have been the wrong treatment. So this thought process has led me down a different route...

Lately, I've been reading alot about spirituality. I have always believed in God but the whole organized religion thing has always been a bit confusing for me. I feel it's based in fear and the God I believe in doesn't use fear tactics. He is all about LOVE. That's it. So what goes along with this new found belief of the spirit world? Energy healing, for one. We are all energy, surrounded by energy, and when we die we will return to that main energy source (God). So it makes sense that energy healing could "unblock" something that a doctor would not see or consider. I tried that but who knows if it did anything. I definitely "felt" some energy going through my body - almost like a static electricity and then some twitches every minute during treatment. But I didn't notice any healing to follow. I might try another healer. 

Separately, I have been having some gastrointestinal issues. Skip this paragraph if you dont want to read about my poop problems lol.. So for about 2 months, I've been having loose stools that would clear up but then return a day or two later. Alot of research led me to believe that my body is having a hard time creating bile. So I am going to cut out meat and heavy fatty foods for a bit to see if that helps. I'm a carnivore so this will be tough but honestly who gives a shit anymore? I'm willing to try anything if it will make me feel better. I've also increased my fruit intake because that is supposed to help bile production. So between these bile issues in addition to my spirituality, I discovered this new book called "Medical Medium" - very crunchy, new age-y kind of book. But so up my alley! It makes perfect sense to me. I won't go into much detail because you either are open to this kind of thing or you're not and I'm not here to convince anybody. Just google it. Imagine my surprise, though, when I read the book and 2 of the major recommendations are to increase fruit and decrease meat! It seems that everything falls into place at just the right time. Synchronicity! Anyway, I've only been doing this a few days so I can't make any concrete observations BUT there is one I'd like to mention. Ever since eating more fruit, I have slept better! According to the book, our brains need glucose in order to function properly. Not just any old sugar though, it HAS to come from fruit. I have been avoiding fruit for so long because of the sugar content! I'd have maybe a serving a day. Now I'm having upwards of 5, 6, 7 servings a day and am sleeping better than I have in a LONG time. Coincidence?? Ill let you know how it goes!

That's it for now! Will try to post more regularly. Hope everyone out there is healing.

And just like that...

I swear, TSW is the most unpredictable, frustrating journey. I just wanted to post this quick update to remind MYSELF that no matter how bad I flare, it WILL end. My skin is now better than its been maybe throughout this entire process. I feel like it could heal very quickly if it wanted to. Of course, I know I'll flare again but thank god for this period of calm!! My skin is still dry and flakey but very little pain and has thinned out all over. No NEW irritations. Now, do I even bother with the cyclosporine?? I'm going to get the prescription anyway to hold on to. Hang in there people!!

Month 27

Wow. 26 months of TSW done. Today is day one of month 27. I haven't updated in a while as I have been fed up. Flaring like crazy. I couldn't even tell you how many times I think to myself "I'm so sick of this shit" and "I don't want to do this anymore" a day. It is so draining to be uncomfortable, in pain, itchy and stingy day in and day out. My functionality has decreased again. I can no longer take my son to school or his activities. These last bouts of flares have knocked me on my ass. Let me recap.

My last update was around my 2 year anniversary. I recall having flared pretty badly leading up to that as well. Then it calmed. Then I flared as if I was in the very beginning again. I'm talking full body rashes, bone deep itch and OOZING. Not just a light ooze, as often happens on my face if I scratch too much. But a nonstop, disgusting, drippy mess. On my head (neck and ears too). DISGUSTING. I AM SO SICK OF THIS SHIT. Oozing is the absolute worst. Im back to using ice packs and wrapping a scarf around my neck to protect it from the wind. The head ooze has mostly dried up but now my entire scalp is itchy as fuck with huge flakes and dead skin coming off. Which makes it even more gross, and even more difficult to leave alone for a picker like myself. Due to this latest flare, I made an appointment with a dermatologist. Can you believe it?! I reached out to Dr Rapaport and he wants me on Cyclosporine. I swore to myself I would NEVER take it or anything of the like but I am so so so so tired. Tired of being sick and tired. So...I am going to see the doctor today and will ask for a prescription for it. The side effects are scary. Like cancer causing scary. But I'm only going to hop on it for like 2-3 months so hopefully the short usage will protect me from the very dangerous side effects. There was a study done in which half of all the eczema patients using cyclosporine went into remission. SO..I'm secretly hoping that it will shut off the immune response that seems to be prevalent in TSW.

I did a nutritional reset called The Whole 30. I don't think it had much of an impact on my skin, if any. What has had more of an impact (I think) is my recent supplement intake. I saw a new functional medicine dr and am taking a bunch of new supplements for stuff I'm deficient in. Within a few weeks of taking it consistently, I started oozing. Healing crisis??? I don't know. So while the goal is to be drug free, I'm going to follow Dr. Rapaports prescribed treatment and hope I don't end up regretting it. I have a feeling this is going to be a longer journey than I originally anticipated. Pictures below.

2 whole years

Heal, heal, heal!!!

That's what I keep chanting to my skin, lol! My 2 year anniversary just passed and I had what a lot of people would consider an anniversary flare. It was quite bad. I felt like my skin was comparable to a year ago, which is a huge step backwards. My neck was burning and stinging, often had to wrap a soft t-shirt around it to block the wind. It also burnt like hell to take a bath. My knees started hurting again too, to the point where I was hopping around again. And the itch! Omg the itch came back. That bone deep, unquenchable itch. Even the crazy fatigue came back too. But now all that has subsided (well, all except the fatigue) and my skin is even better than it was before the flare!! Ever the unpredictable journey with you, TSW.

Trying to remain positive in the new year. Starting my Whole 30 tomorrow - excited to see what health benefits I experience from it!!

23.5 months - picture update

Still counting down to my 2 year anniversary. Still can't believe its been that long.

The past 2 weeks, I've been flaring. While I'm sure stress was a big contributor, I think the biggest reason was lack of sun. It's been rainy and overcast every day and my skin has definitely missed it. I've gotten sun 2 days now in the past week and those 2 days made my skin feel so much better. I love the sun. The texture of my skin got really bumpy when it was flaring, almost like hamburger meat. And red, hot, and itchy. It felt really gross. But then a few days in the sun and I'm back to being comfortable! It's really weird - when my skin is calm, it is SO soft. Like absurdly soft. Sometimes I just keep rubbing the same spot over and over again to feel how soft it is lol! Also lately I feel the temperature regulation issue is back. If I exert any kind of energy for as little as a minute, I start overheating. Almost every night I'm having to change my clothes due to sweating. I wonder if this is part of TSW or some other issue.

Got some bloodwork back and I'm no longer vitamin D deficient! Woohoo! Probably from all my time in the sun. Overall my health has improved since a year ago when I last got my bloodwork done. Sleep still sucks though the lack of it is affecting my daytime hours less, which is great. There are still times that I get overwhelmed with fatigue for no reason, but they are much less frequent. Anyway, below are pictures from the past month. My hands are the worst right now. They keep cracking, are super dry, itchy and a bit painful. My other affected areas are inner elbows, behind knees, neck and face. So all the same areas but just lesser intensity. I always thought that it would just teeter out eventually. I feel lucky not to be one of the people in TSW who flare and then have completely calm periods because I think I'd get pissed every time I started to flare again. At least I know that once my skin has cleared, that it will stay that way. So, pictures. The first ones are flaring, the last ones are calm-ish, and the middle ones are from the wedding I went to a few weeks back! The wedding pics show how I was able to wear makeup and look and feel NORMAL. Like a normal human being. It was amazing.

There ya have it, folks!

23 months

WOW. I can't believe it's been almost 2 full years since stopping topical steroids. To be exact, it's been 23 months and 2 days. And I am healing!!! I even went to a wedding last week, wore makeup, and drank alcohol with no major setback. I am flaring a little but nothing compared to what I was expecting. Last year, I went to a wedding around the 6 month mark and remember having to almost scrape the makeup off my face. That was the last time I wore makeup until this past week. Now, like I mentioned, I am flaring a bit. But I've come to the conclusion that in most cases, a flare is not caused by anything. It just happens. With that said, this flare felt a little different. My neck was really hot and itchy. So while it could have been due to the alcohol, I think it's actually due to stress, if due to anything at all. Last week, the night of the wedding, my family suffered a terrible loss. My mom's boyfriend of 12 years passed suddenly, and quite traumatically, right in front of her. So about a day later is when I started flaring. Maybe they're connected, maybe they're not. All I know is somehow I've been handling it pretty well. I think because I've had to be strong for my mom. I've never seen her affected by anything like this has affected her and it is just so heartbreaking. But I always try to find the silver lining in any situation. And as days go on, I've been able to do just that. So for that I'm grateful. This kind of situation forces you to stop and take stock of your life. I had already known there were changes I wanted to make once all this stuff was over but losing Kevin only reignites that fire by making me realize how precious life is. Here are some examples:
1. School - I want to go back to school! For holistic nutrition. I've always been interested in nutrition, and even applied to grad school a few years back but didn't end up going because I wanted to start a family instead. Now I realize it doesn't have to be one or the other. I can be a good mom and wife while pursuing my own dreams. I think doing so will actually make me a better mom and wife.
2. Positive outlook - I realize there are times where I'm negative and it sort of just comes out without me even realizing it. I'd really like to change that. I've already been making a conscious effort to do so but I want to shift my whole outlook on life to be super zen. Stress = bad.
3. Yoga - again, I want to be super zen. I dont plan on going back to my old exercise regime which was basically just cardio because that's bad for the adrenals and thyroid, both of which I have problems with. I just want to do fun and revitalizing stuff.
4. Natural living - I want to detox my life. This is going to be more difficult because my husband is innately against anything "healthy" so it turns into a fight if it affects him in any way. I've started small - changed to more natural hygiene and cleaning products - but would eventually like to make my own.
5. Make a difference - I don't know how exactly but this will end up tying with #1 somehow. Our food system in America really pisses me off. I won't go into more detail because I could go on and on forever. Which is why I need to go to school to have an outlet for this kind of stuff since my husband is so against it.

I will post a bunch of pictures soon!

22 month update

Technically it'll be 22 months down in 4 days. I figured it's time for a more thorough skin update. I guess I'll start with my routine.

Currently, I'm taking 2 baths a day and getting sun for an hour a day when available. I'm still doing moisturizer withdrawal but have to admit that I do use neosporin + pain relief sometimes. Only the back of my knees bc they hurt so bad. When they calm down from a flare, I'm able to stop using he neosporin no problem. I do try to limit my use though. I know the new moisturizer withdrawal is now full-fledged moisture withdrawal. I couldn't do that though I know it comes recommended by Dr. Sato (a TSW expert dermatologist in Japan). Moisture withdrawal is essentially moisturizer withdrawal with less bathing. The concept is that even water acts as a moisturizer. Personally, I feel way more comfortable taking twice daily baths. Occasionally Ill take only 1 if my skin is calm and dry bc the 2nd will make it too dry. When my skins gets so dry that I just rip it off, only the bath can 1 stop the itch and 2 soothe me. I really like baths now!

The areas that are affected most are behind the knees, hands, wrists, elbow creases, butt/leg creases, right ankle, neck, chin, face and torso. The knees are my biggest issue right now. I have to be careful walking because if I stretch the skin too much it will STING and burn like crazy. I know it's the scabs trying to close but, like, how long do they plan on taking?! So I'll usually re-wet them so I'm not tempted to pick at all the dry pieces of skin peeling up. It hurts when its drying off but then is usually more comfortable. If that fails, then I go for the neosporin. They seem to hurt the most after they've dried off from any contact with water but hurt the least when they are "moisturized" by the water. So when I take the bath, because I've been in there for 15-20 min and I'm adequately moisturized, the soothing feeling tends to last alot longer than when I just rub some water on my skin.

Other than that and the ongoing flaring which obviously sucks, life is slowly having some normalcy about it. On good days, I have pretty decent energy which is a huge change from last year. Last year I was home bound and essentially bed bound. I was suffering from adrenal fatigue, a result of the long term topical steroid use, and was just tired all the time. I don't think that will be an issue once this is over, which was actually a big fear of mine. Now my fear is...irrational. I wonder if I will heal, if my skin will ever get better, if I will ever sleep normally again. But like I said, when I truly think about it, I know I will. It is just hard to stay positive all the time after feeling like shit for so long. I have good days and bad days but the good days are like little previews of the life I will get to live once this is all over!

I've been thinking alot about iatrogenesis. No, I didn't know what that meant before this experience lol. An iatrogenic illness is one that is the result of medical treatment, from a physician or medication (or both). Basically, you listen to your doctor, follow the prescribed treatment, take the prescribed medication, but alas... you get fucked. I listened to all my doctors. I never applied the topical steroids any other way than what had been instructed to me. I took the valium as instructed. In fact, I usually took the lower dosage option. So then why did nobody tell me that I could become addicted to these things??? Why, even now, do I have a hard time convincing the very doctors that prescribed these medications that I'm now suffering from basically all the adverse side effects possible?? With these drugs having the potential to obviously ruin peoples lives, why are they so freely prescribed?? I'll tell you why! Because $$$$$ money. If we didn't stay sick and continue to need these medications, then those big pharma companies are not going to get paid!!! Even as I say that, I realize I sound like one of those crazy conspiracy believing people. I AM one of those people now I think. I mean, I don't believe that doctors are literally out to get me, but I certainly don't believe that they know best for me anymore. I dont assume that just because they hold MDs or PHDs that they know my body better than I know it. Because when this is over, it will not be a doctor who cured me, it will be me. So I think I've earned the right to be a little skeptical of the mainstream medical community. Holistic and functional medicine is where it's at!

Hope this post finds you all well! xo