[brain fart] fighting alone?

i do not know how to begin this entry when there’re so many thoughts in my mind.

i’ve just went through another week of crazy skin changes, just 5 days ago it was a little oozy all over, skin just falls off me in the shower, leaving me raw for an entire day afterwards, and don’t get me started on the moisture i feel when i lie down in bed. it feels too cold if i don’t cocoon myself in my blanket, but it feels so hot, moist, and itchy (especially around joints) once i feel that the temperature is right. waking up 10 times a night to scratch, only to have my newly formed skin rub off me like rubber dust, and then regretting the next moment because now my arms are raw and moist too. and shit, did i scratch my neck and back too? holy crap, now i’m going to wet my bed for real. and waking up to that oddly familiar stench (from the seeping bodily fluids) really isn’t the best way to start my morning.

but things change fast, really fast. while it felt like it lasted a life time when i’m actually in the moment, it actually only lasted 3 days. actually, 2 days, and the 3rd day it was already getting better. by now, there isn’t any more oozing. my skin still sheds, but i don’t have raw skin waiting for me.

i probably chanted “it’s all a process, it’ll be over soon” a thousand times during those 2 nights. it’s usually most unbearable at night, feeling hot and bothered (literally) for the wrong reason hahahaha!

i sat myself down today to write about some thoughts that have been running through my mind lately, since i’m feeling much better now. at least my mind is in the right space.

first thing first, i started this blog to document my progress for my own reference. somewhere along the way, some people decided to join me on my journey and watch the process unfold.

i still document for myself, but sometimes i find the need to answer to everyone else who’re looking up to me as the hope and light they need to see themselves through their very own TSW journey. i don’t see that as a burden. that’s something i take pride in doing – lifting you guys when you all need a helping hand, a guiding star in the darkest nights, an anchor in the stormy sea.. you get the drift.

i enjoy being able to reassure others that they’ll heal, because that was probably the only sliver of hope that kept me going back then when information on TSW was so scarce. there wasn’t even that many scientific journal that documented the healing from TSA/TSW. it’s difficult to stay grounded when there is so little proof, but i chose to believe in it anyway. dr rapaport and dr fukaya were two pivotal person in my TSW journey. even though i didn’t get their direct support, they were my anchor, and i believed and stuck through it even when people around me didn’t really believed in what i was doing.

if not for them, i would have lived with the idea that i’ll have to live with bad skin forever. FOREVER. that is a very miserable state of mind. i’m so glad i wasn’t in that place.

going through TSW wasn’t easy when i have to convince people why i will never use topical steroids again. going against the convention almost made me a crazy person. which was why i shut myself away from those friends who question my choice.

i would have felt very very alone if not for the ITSAN forum. being able to connect with other skin friends reminded me that i’m not in this alone. i’m not fighting an unknown cause alone. and i’m not crazy for doing something radical, because there are others who believe in the same thing as i do. i haven’t been in the forum for a really long time, but i never forget the first few skin friends i made there when the forum was new and small. they provided me with tremendous support that not even my friends can give me. it really takes one to know one.

i used to get offended when people question my choice, because they make me feel like i made a decision without thinking thrice. my self-defense mode is switched on automatically and i’m ready to fire. if not for TSW making me so sick of explaining my stand, i’d probably lost a lot more friends than i can imagine.

thinking back, they have every reason to cast their doubt on me, because i did make the stupid decision of applying topical steroids for 8 years, all over my body. and they probably meant well, right? there’s really no point in choosing to see the situation in a negative light, because it’s only hurting no one but me.

even though i know their well intentions, i still feel a pinch when they doubt me. it’s just like.. the following optical illusion.

you know the lines are the same length, but you still can’t help but see (a) as the one with the longer line!

i am fully aware of what kind of responses i’ll get when i share news of my latest flare ups, especially my month 48 update with my incredibly swollen face. while most of y’all are supportive and encouraging (thank you SO SO SO FUCKING MUCH, you guys shine like the brightest star in my sky😀 ), there’s always going to be some concerned souls who will raise some skepticism against my thoughts and beliefs.

nothing new, isn’t it? it’s me against the world all over again.

just that this time, i’m more alone than before because i’m no longer believing in the same things that most do (that i should just sit here and do nothing about my skin because this is TSW and not eczema). the idea that what i’m experiencing isn’t TSW is shocking to some, and hard to stomach for many.

i thought of escaping and not updating my blog for a while, until i’m healed again. i thought of hiding and not replying to any comments. i thought of fighting this alone until i have results to prove that my hypothesis is correct.

but i realize that’s not going to help anyone. and hiding isn’t going to solve any problem. it’s probably a lesson that i need to deal with in life, because there will always be people who will challenge your belief. it’s not a bad thing even if it hurts a little, especially during a time when i’m more vulnerable than ever. it forces me to think in a different way, to re-evaluate my choices and decisions. in a sense, it actually helps me come to a better decision because everyone has blind spots, and it takes a person from another perspective to point that out to me.

if i can get myself out of my shell to face it, i think i can face any other opposing thoughts in the future.

so skeptics, thank you for bringing up thoughts that haven’t hit me. thanks for helping me see a fuller picture. BUT, please be gentle with me as you point out my blind spots, because it still pinches me😛

and to my lovely skin friends who have been nothing but supportive, constantly telling me how inspirational and strong i am, thank you for giving me the affirmation i need to keep going. i appreciate every little nice support i can get because you all know how precious they are when you’re doing  something that don’t garner lots of support. scarcity makes thing more valuable🙂 law of economics!

as for me, i’ll continue to trek this path that most don’t agree with to explore new territory. it takes a lunatic to do something unconventional, something against the flow. but it’s even more stupid if i keep repeating the same thing (of doing nothing) and expecting a different result.

you know what, maybe i’m not fighting alone after all. it just feels like that because i focused too much on the tiny skeptical voices, and failed to realize the louder supportive voices. time to refocus my attention🙂

21 thoughts on “[brain fart] fighting alone?

  1. Dear Juliana,
    Thank YOU for your full hearted fight against unknowledge (topical steroids treatment), against skepticism from us who don’t understand OCM (Old Chinese Medicine) and your fight against yourself in dark awful nights (not to give up, not to hide yourself from the awful and unfair world).
    I have sometimes had a weak trust in your argumentation, but who am I to know better than you about your body? Forgive me.
    I’m sure you collect all adequate information about treating your illness and no one has to blame you for anything.
    May the day come true, when you can show the world, that your fight and suffering has saved many others from awful pain in the future.

    Wish you love and strength for your great and important dokumentation on your researching skin treatments.

  2. Dear Juliana,

    I’m so sorry to hear that you have been having doubts about your skin journey. I have been following your journey from afar for some time and have posted a couple of times to the board under ‘Tina’ and ‘Alexia and Sonja’. I’m not quite sure what my wordpress password is anymore so I thought I would drop you a quick email this time.

    You probably don’t remember, but I started my own skin journey in August 2011 so I’m 44 months into my withdrawal. It was really tough at times, and it’s not over yet. What I found was that it just went in cycles, each cycle getting progressively better. I once read on the internet a post explaining that healing is cyclical. Every time your body goes through a healing cycle, the newest layer of skin is healthier than the one before. However, obviously, if the skin that the newest layer is built upon is very damaged, the next layer is going to be less damaged but still have bad characteristics of the layer before. However, because your body is always fighting towards health every successive layer sheds some of the bad characteristics and has more of the good ones. I keep repeating this to myself when I hit an impasse and start doubting whether I am going through TSW or whether I am an unfortunate lifelong sufferer of ezcema. I think not to the latter question. 44 months later, I can see that my skin is pretty much clear (I was a lifelong steroid user, but didn’t use the very strongest cream anywhere except my hands). These days, my hands are still old lady hands but everywhere else any slight healing is barely noticeable. I notice also that now that my skin healing is coming to an end, my body has started working on my back, which has been very stiff ever since I was a young child – welcome to the new healing cycle!

    Going on to a tangent here, I also have problems with regulating my body temperature. I find that when my body is working very hard to heal itself, I feel incredibly cold and tired. My personal belief is that it is the body’s way of saying, ‘slow down and take a break, there are important things going on here’.

    Thank you for your continuing posts. For the past year or so I haven’t needed them so much as my healing journey meant that I barely think about my skin anymore, but I admire your tenacity and perseverance, and your willingness to keep putting yourself out there for others. You reach people, some of whom you will never be in contact with, but many who will take great comfort in your posts.

    I just wanted to wish you luck with future healing. I am sorry to hear that it’s been wearing you down and wanted to send a virtual skin hug. Take care of yourself and keep up the good work.

    Tina

  3. After all, we are islands in the same sea. We are all fighting this together, connect by the sea of information that we get and the blog and comments that we share! However, people can be nice in many ways. Lets say those skeptics are only nice people who do not know how to express their concerns in a nice way. We shall forgive others when they are actually lacking some skills :p stay strong! Please know that you are giving hope to many skin friends out there whos hiding. When you need a place to hide, we are all here to provide a safe place to “hide”🙂 it will soon be over!

  4. hang in there Juliana – you’re doing an amazing thing by being an honest example to all of us out here. Just listen to your body, only you know what it’s saying. Take care and hope you feel better soon

  5. I just wanted to drop by and say that you’ve got a heck load of support within the TSW community. In fact I would go as far as saying that you’re one of the pioneers in the sense that you have a very well documented path through TSW. Keep going strong! I’m sure you’ll get to the bottom of this flare in due course.

    I can’t imagine what it feels like to have had such good skin for a lengthy period of time and then have it regress again. However you’ve gone through TSW once; there’s nothing to suggest you won’t fight through it again! Hang in there.

  6. Hey Juliana,

    It is good to pour out the emotions and let people know of how you are feeling. I’m glad that when you got a break in the skin flare, you finally had a clearer head to think, function, and write about your thoughts.

    No need to say you were stupid for applying the steroids….what other choice did you have? You had no choice but to reapply the steroids in order to secure relief, otherwise you would be miserable….the doctors were the stupid criminals, not you….I’m really glad you found itsan and dr.raps papers and made the decision to stop steroids being all alone….just keep pushing yourself forward…I remember before I started in school back in month 26, Dr.Rapaport told me I must push myself and attend school and get back into the real world. It was hard and I’m still suffering at ~33 months but I’m better and it’s a little more manageable. Keep fighting girl!

    • hey azeem,

      thank you for your comment! TSW is one of the toughest boot camp i’ve been through, nothing can break me now. i’ll stay strong!!🙂 i hope you feel better soon!

    • Hang in there Juliana, we all have doubts sometimes but I guess u know your body best and will do what you think best for your body.I am also in TSW month 29 and I am still experiencing flares on and off. You are my pillar of strength during my beginning of TSW and we exchange emails and your prompt reply to all my queries really helped and encouraged me.I must thank you.Please stay strong! Take care OK

      • hello cheryl! i hope your flares these days are very minor! if they’re as bad as TSW, you may want to do something about it. i’ll stay strong, thank you for your encouragement!

  7. Hi Juliana! How can i get in touch with you? I would love to tell you about a natural product that has really helped my son manage his eczema. He has been steroid-free for 9 months now for the most part itch free and comfortable.

    Or you can email me at j.erskine@hotmail.ca

    Thanks! Jas

  8. You’re an inspiration, keep going! Thank you for all the info on your blog, which has helped me so much over the past few weeks since starting tsw. I’ve read so much online but not started commenting until now because I’ve only just realised how much all the online documentation is helping me through. Best wishes on your healing journey!

    • thank you so much loretta! beautiful name!🙂 i’ll stay strong and keep going, thank you for your encouragement! it always makes me happy to know that i’ve been able to help, so thank you for letting me know!

  9. Hi Jules. I am sorry to hear of your latest flare ups. I think it is really brave of you to embark on this journey of finding out the underlying cause of your new flare ups and sharing your findings with us. Admire your perseverance and resilient spirit. Keep on and trust yourself as you know your body best.

    I am now in my 20th month of tsw and healing slowly. I still have oozing wounds but only on the back of my thighs. Still shedding skin daily and rashy but seeing lots of healing in skin texture, body temperature and sleeping patterns. This keeps me hopefully that I will fully heal in the future. I have also experimented with many options to ease healing.

    I noted that taking magnesium, B1, B6, B12 and MSM has helped a lot as it speeds up the detoxification process and cell repair.

    • thank you audrey! the ability to share my findings with you all is one of the things that make me feel like my flares are worth while. like.. it gives my sufferings a meaning!🙂 perhaps it’s just how i cope with bad times.

      it’s amazing those supplements managed to help you feel better! keep it up! vitamin D improved my sleep a lot a few months back, so i believe i really have vitamin D deficiency back then. what i mean is everyone will have their own insufficiencies, so keep experimenting to see what works for yourself!!!

  10. Hello – it has been awhile since I have visited your site. Which is a good thing for us! I’m so sorry that you are experiencing some of these flares again. But I want to thank you so much for everything you have been sharing. I started the TSW process with my 3 year old daughter in August 2014. The winter was so rough and we went through months of flares, sleepless nights, and tons of different baths, ointments, etc to help her. But I can tell you now that she is SO MUCH BETTER. I didn’t think it was going to happen. I really didn’t think I would ever see her skin clear or have a night where she wasn’t crying and scratching. But she is there now. Thanks to people like you who gave me hope and helped me to not give up. I feel like this is one of the best things I could have ever done for her as a parent. I got her off steroids by the age of 3. She was “diagnosed” with severe eczema and her skin has healed itself completely. I’m forever grateful for you and the ITSAN group. Please keep going!

    • hello! thanks for your comment! it sucks to have flares again, but it’s good because it’s a sign that i have not addressed my eczema yet, and if i don’t address it soon, it will go out of hands in the future again and again. i rather nail it down once and for all now.

      i’m so glad your daughter is doing much better now!!!!!!!😀 REALLY HAPPY FOR YOU! please take note of your daughter’s digestion. i have read that children usually get eczema because of gut problems. a lot of people have success by introducing probiotics, but we all know that’s not all to healthy digestion.

      good luck!

  11. Hi Juliana, thank you for sharing your journey with us. You are not alone, I have also suffered for over 20 years and still continue to hunt for the cause of my eczema. As I’m also experiencing a low right now, I thought I’d share with you a piece of work that I did, a short film: https://www.nfb.ca/film/itch

    Hope you and all your readers get well soon. Take care and hang in there.

    • thank you su-an! i watched your film and it makes me feel itchy hahahah! a wonderful representation of things crawling under our skin!!!
      good luck in getting rid of your eczema! YOU CAN DO IT! WE CAN DO IT!!!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s