Wednesday, May 4, 2016

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.


  1. Thanks for the update. I was thinking also should I even bother going to the doctors to see what areas I am deficient in? I'm also at 29 months and I'm currently in your boat too. I'm kind of tired at this point. This has gone on way longer than expected but I'm still optimistic because of how your can can be so painful/ flaring and then it reveals newer skin.

    1. I do think that any deficiencies or underlying health issues are probably holding our bodies back from healing. It can only do so much at a time. That's why I think I flare with my period bc all the reserves are going to that instead. We will heal but damn, when???

  2. try marijuana.. marijuana helped me

  3. Hi Karina, like you I was born with atopic eczema and have been hospitalized with it a couple of times, it was so bad. I did find a solution after years of trying. Don't despair, there is hope for you. With this being an auto-immune issue, it's very much down to diet and stress. If you are interested in hearing how I got mine under control, I'd be happy to share my story in greater detail. I don't want anything from you, just want to help as I have been through it. I can be reached at
    PS my biggest triggers are sugar, yeast, alcohol and stress!

  4. This might sound crazy but have you tried acupuncture? The eczema that I'd suffered with since childhood finally got out of control about 8 years ago. On a lark and because I felt like I was going to pieces,I went to an acupuncturists and after about 6 visits it was gone. I haven't had a flair up since. Wishing you all the best. :-)

  5. This might sound crazy but have you tried acupuncture? The eczema that I'd suffered with since childhood finally got out of control about 8 years ago. On a lark and because I felt like I was going to pieces,I went to an acupuncturists and after about 6 visits it was gone. I haven't had a flair up since. Wishing you all the best. :-)

  6. Hi Karina, my son was diagnosed wz having CMPA when he was 9 months old. We saw a sudden flare up of rashes on his face and the doctor later confirmed it as Ezcema. He had to wear mittens 24/7 to stop him from scratching himself. Poor guy! So we stopped all Milk products and gave him an organic diet. But along the through all trials and errors, i truly believed that consuming cold pressed extra virgin coconut oil as well as taking probiotic helped him recovered. He is 4 now and his skin is now free from Ezcema. He has been cleared after taking both for 3 months. He has even started taking milk based products such as yogurt, cheese... but when he takes too much and we see the tell tale signs on his face we will quickly give him double dosage of the prebiotic and even apply it on his skin. Within 2 hours the redness in his skin is gone! I have friends who tried it too and it seems to help. Anyway these two recommendations are health supplements that do good for your body. Taking them won't harm in any way.

    You are absolutely right... a change of diet is extremely important. Stay away from steroid .. it only helps on the surface and if you want instant relieve. For long term it has to be a change of lifestyle. A friend of mine who is an Ezcema sufferer can even get a rash when she is stressed out! Meditation and natural health supplements helped her deal with her agony.

    I sincerely hope you will get through this. All the best!