31.5 months

Every time I start to write a blog post, I have to take a deep breath and try to de-stress. So here goes. Woosahhh.

So at 31.5 months, I am still suffering daily. I was going through all the photos on my phone because I know that I was healing last year and wanted to figure out WHAT caused this change. I know during TSW we always try to find reasons for our flares, and most of the time there isn't any. But I KNOW this time there is. I could feel it. At some point this year (2016), I felt my body stop healing. It literally felt like my body was saying, "Okay, not going to do anymore! Too much going on in here!" I explained in my last blog post the process of my "awakening" and that has only continued. So rewind to the beginning of the year. Starting Jan 1, I did a Whole30... and that's where my problems began (well, you know what I mean). I remember feeling great prior to doing the Whole30. I was bouncing around with energy trying to convince others to do it with me. At the end of it, every asked if I was feeling better. I was honest when I told them no, not at all. Admittedly, I went heavy on the meat during this "cleanse". It was not long after the cleanse ended that I started feeling my healing stall. I started having gastrointestinal problems. After a few months of this, I went on to develop daily diarrhea (sorry if tmi but come on, that what this blog is all about), crazy gas, and general discomfort. During this time, I submitted a stool sample to my functional medicine doctor because I felt I was having issue with bile production. This was later confirmed. BASICALLY, I went so meat heavy on that cleanse that I essentially blocked up my entire digestive system. The liver is in charge of digestion and detoxing. I have genetic defects that make my body detox at a 10% rate (more on that later). So I flooded my system with that which it cannot break down. It makes perfect sense. Thats probably why I started being repulsed by meat because my body was sending me signals that I was having too much fat and protein. Imagine that!! I love being in tune with my body. Most people think Im oversensitive but if I wasnt, I would literally still be using topical steroids. So F that notion.
So back to the genetic defects. Alot of people in TSW are exploring this route and for good reason. When the methylation and detox systems in your body are slowed down, it takes alot longer to heal. That is because the toxins that would normally be expelled through regular detox methods are still in the body trying to get out. This causes in flammation and the cycle continues. My new doctor explained it like this: if you have no defects, then your 6 lane highway is speeding along just fine. These are the people who heal from TSW in record speed, leaving the rest of us wondering WTF?! If you have 1 mutation or are heterozygous, you're detoxing at about 50% the rate of normal people. So this is probably where the bulk of us lie. Then if youre homozygous, which I am on MANY pathways, you're detoxing at a rate of 10%. Ten fucking percent. Who knows how that plays into Dr. Rapaports estimates of time usage. Im guessing the people who are methylation and detoxing fine are the ones who heal in a year, like I said above. The people who have a heterozygous mutation probably make up the bulk of that average. Then, if you really dig around, you can find people at 5, 6, 7 and even 8 years still in TSW. Now, Dr. Rapaport will not say these people are in TSW. He will say they now have eczema. I believe these people are still detoxing.
Then there is the issue of how the original eczema began. I think alot of people will be happy and content with the outcome if they get through TSW and still have eczema. Not I! I am not going through all this to still have eczema. F that. This new doctor I'm working with has cured people of depression and anxiety, both of which I have struggled with, as well as allergies, which I struggle with as well. Most importantly, he has worked with people going through TSW as well. Halleleujah!! Someone who knows how to deal with me. Im sick of going to doctors and knowing more about how nutrition DOES affect the entire body. Like, hello. Doctors spend 3 course hours learning nutrition in their entire education. 3 hours. Thats the equivalent of an elective. I love Dr. Rapaport and am so grateful for his help through TSW. But he doesn't know everything. He doesn't believe nutrition has anything to do with TSW and I can definitively say that it does. For those of us with methylation malfunction, we typically have an inability to process or convert folate (think leafy greens) and therefore anything fortified with folic acid or b12 is building up in our systems, waiting to be detoxed. If we cannot detox, we cannot heal!!! Our bodies can only focus on a certain amount of things at a time. It's why us ladies flare so much with our periods because all of our reserves are going towards menstruation. So if you're in later stages of TSW and feel you've reached a standstill like myself, I would recommend you take a look at every single thing that goes into your body. Diet, lotion, bath salts, whatever. Everything that goes in must come out.
Now, regarding diet. I was a big proponent of Paleo. I still resonate with alot of their information. BUT is high fat/high protein/low carb the answer? I used to think so but not anymore. CARBS are where it's at!!! The liver, which in eastern medicine is known to be the cause of eczema, is in charge of digestion and detoxing. So how would eating a diet high in fat and protein, both of which are hard to digest, make it easier to heal? It just doesn't make sense. The brain runs on glucose. The body, for the most part, runs on glucose. Yes, we need protein. But how much? Nutritional science is still a young science and the available information is always changing. This is where I say - USE YOUR INTUITION!!! I liked being Paleo. I enjoyed eating high fat foods. But I always felt deprived of carbs. Now that I'm eating all the carbs I like, I do not feel deprived of fats and protein. I believe we have been taught we need more protein than we actually do. Where do you think this information came from? THE MEAT AND DAIRY INDUSTRY. Why would you trust an industry who is only out for profits? Think they care about your health? No. Do you think they care about the health of their product (cows, chickens, pigs)? No. I now know that we do not need meat to survive. We WANT meat. We have been raised to eat meat and therefore think it is normal. It's not. We are the only animals who need to cut, cook, peel and mask the real taste of meat. We call it a different name than the animal (think pork or steak rather than pig and cow). But where do you get your protein, you're wondering. If you research how the body actually converts amino acids into usable human protein, you'll realize that we don't need meat. If you're eating a nutrient dense diet with lots of fruits and vegetables, you will easily meet most of your needs. You'll need to supplement B12 and maybe a few other things but that's really no big deal. I think the trade-off of saving lives and earth's resources outweigh the "need for protein" when you can easily get it in other ways.
My plan of action - Obviously I have lowered my fat intake to relieve some of the burden on my liver. I have a bunch of new supplements that have been recommended by my new doctor. I am really hopeful with these new additions!! I was already taking B12, 5htp, curcurmin, zinc, selenium, and probiotics. Now I've added in digestive enzymes (was taking these before so bringing them back), histamine block, GABA and prodovite. Will post another update once Ive been on them a bit and can notice if they've made a difference. Pictures next time too!! Hope everyone else out there is healing. Oh! And I've started an instagram account to track my photos and food. Feel free to check me out - mangomama11.11! Peace and love to you all :)

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.