Home » Uncategorized » Day 302 – 21st May 2015 The Weighting Game

Day 302 – 21st May 2015 The Weighting Game

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  • Itchiness: Moderate
  • Flaking : Severe
  • Burning skin: Moderate
  • Redness: Calves, thighs, arms, peri-oral area
  • Soreness : Limbs, face
  • Weeping skin : Calves, thighs, face
  • Mood : Irritated, unmotivated, can’t be bothered anymore

The past 4 years I have seen my weight yo-yo’ed more than ever in my past 36years.

Prior to dating around 2011 , I managed to diet and slimmed down 10kgs (from 63kg) in 6 months. I thought that was an amazing feat. I managed to stay in healthy lifestyle and weight was maintained at 56 kg.

Thereafter, I tried to slim down further for my wedding, I managed to go down to 53kg. That was the last time I dye my hair, put makeup on. Then came pregnancy, I stopped dye for hair. I put on just a little bit of healthy weight to 62kg in 2013 till full term. Not very big at all. Baby was just the right size for birth. I was very happy, although I look old.

OLD. My grey hair had people thinking my hubby was my son, after I finished my confinement period. My weight went right back to 57kg again by Feb2014. Perhaps because of breastfeeding. Weight loss was fast!

Then came TSW. I know TSW will cause weight loss. But I wasn’t prepared for such a major impact. I am now underweight at 45kg. I lost 12/13 kgs, right within 3 months by end Oct2014. I used to joke with a very close colleague of mine, how thin she is when she complains she is fat. I always tell her “try your next life, if you wanna be fat. I’ll try to be slim my next life too.”

But hey, guess I don’t have to wait till next life to have my hubby carry me in AND out of a room after all!!!! I joked that he can carry me multiple times if he wants to, compared to when we first married and he carried me just once into our new bedroom.

And now with the STUPID ELEPHANT SKIN I look even older. Several cabbies thought I am 50 years old, and I have nurses asking me if I am my son’s grandmother. I could have wailed on the spot. It is this, and  that my son doesn’t cry out to me, that is the major cause of my depression now. And I know this elephant skin will stay for the next 3 years or so, that coming from TSW veterens. I wonder how they manage to put makeup or dye their hair??!?!?!??!

I am mainly now on an almost vegan diet, staying away from gluten, soy, dairy, refined sugar, nuts and shellfish. I eat a serving of pork once a week. But I am ALWAYS hungry, so very hungry any time of the day. I am glutton by nature so this is pretty tough for me…….. I am surprised tho, that I managed to stay away from caffeine from pregnancy till now. I used to be so addicted. Chocolate too. Sometimes I can really surprise myself.

Right now, am on the quest for healthy weight gain. But with the current diet, I just have no appetite. Everything tastes so bland, as I can’t have asian sauces mainly made with soy or refined sugar or shellfish. CAN DIE. Sometimes, I accidentally ingest soy, and I realise over time, the reactions from accidental ingesting forbidden foods have become less intense! Its as if the intestinal tract is getting stronger to fend for the inflammation usually caused by those foods.

So I am following through with the LEAKY GUT theory. And hopefully with more perseverence I will keep the glutton SueAnne away, and heal in miraculous speed.

FAT HOPE.

SKIN UPDATE:

 

imageimage,image

Colour has improved, less red. Inflammation is less intense as I mentioned with my strict diet. But the relentless itch… erk. Guess nothing I can do to prevent that. The new thing happening, along with the hot crazy weather, is intense sweating. I am talking about 24 hours sweating, only relief is in the bath tub. OH the bad stench from sleeping in sweat is back, and no I cannot use air-con.

Skin is still far from healed. Air-con still affects me badly. I flake slightly lesser but am still attracting curious views from people when I go out.

PLEASE LET ME HEAL ALREADY! I BEG  YOU! I AM DESPERATE!

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3 Comments

  1. Greg Stewart says:

    Ok, I feel I need to preface this with an admission of inability with respect to commenting without seeming like an “anti-TSW ass”, but please bear with me. I know you’ve read some of my own posts, and you have asked me about “bio resonance therapy”, and I really don’t want to appear intrusive or rude, but I feel really compelled to say something… anything… I apologise in advance for anything that be construed as offensive. I intend this to be as conversational as possible. Of course, I may fail at that….

    I read these blog entries–yours, as well as many others-and I feel miserable for you, I really do. It doesn’t really matter that my disbelief in “TSW” tells me that you are subjecting yourself to undue misery; the misery you are experiencing is real, and it is just a continuation of the misery you had prior to this “TSW journey”–when the standard steroid protocol was doing little or nothing to solve the problem. But, I can’t help believing that there is a far less painful way to attack this problem than depriving yourself of medication.

    I’m not saying “you need to be using steroids”. I hate them, probably as much as you–even though I do use them, myself. But, I am also not admitting that the steroids have put you, or anyone else, in this particular position. Were they contributory? Possibly. The list of side effects is long, and patient compliance, as well as physician instruction and involvement are variables that can alter the results of steroid treatment drastically. But, I believe that there are other complications to eczema that have put “TSW warriors” on this path, apart from corticosteroids.

    Two things come immediately to mind when I read each mention of oozing, weeping, burning and soreness: allergic reaction and/or infection concomitant with eczema. Unfortunately, either can lead to the other, and each can exacerbate the other in a cyclical process that causes eczema to flare uncontrollably. Dry, cracked, and damaged skin are very porous to allergens and microbes. The simple act of scratching mild eczematous inflammation makes it susceptible to microbial transmission–from personal sources such as common nasopharyngeal colonies of bacteria, as well as from external transmission from interpersonal contact, contaminated foods, and other objects.

    The two most common microbes infecting eczematous skin are Staphylococcus aureus, and Group A Streptococcus (GAS), both of which are pyogenic bacteria that can be very serious when infecting the skin. S. aureus can actually cause eczematous inflammation (you may have read this in one of my articles), and is present in as much as 90% of individuals affected by eczema. Cellulitis caused by both S. aureus and GAS very often oozes in the very same manner that “TSW warriors” describe.

    As well, easy examples of allergens/irritants that cause oozing dermatoses are poison ivy and poison oak. Eczematous skin is particularly susceptible to an allergic response to many factors in our environment, such as nickel and other metals, perfumes and other chemicals in the air and on surfaces we touch and products we use, furniture, to foods that we eat or even some with which we come into close proximity. You mention your recent effort to avoid gluten, soy, and other suspected dietary triggers, and this is very good. It may or may not be the culprit, but testing is the only means of determining what helps. Unfortunately, for many, selective food avoidance is not much of a benefit, and there is no single diet that has the answer when it comes to food triggers and healing eczema. Yes, I do believe gut health is important in the overall treatment process for eczema, so stick with this as best you can. You may already be aware that my own experience has been rather difficult, but somewhat successful.

    The flaking is another issue that frustrates me when reading the comments of “TSW” experiences. And, in many cases I read also of people on a self-imposed “withdrawal” from moisturisers while on this path, and I am absolutely confounded. Eczema is due to an inherent deficiency with the skin’s barrier function that makes it unable to retain moisture, among other problems. Transepidermal water loss (TEWL) is a major contributing factor to eczematous inflammation, and I simply don’t understand this particular reasoning where moisturising becomes evil. (I honestly don’t know if you have subjected yourself, personally, to this.)

    The flaking, as well, makes me wonder about “TSW” reasoning with respect to the longevity of the process. With the degree of dermal shedding related to severe eczema (and, yours seems a very good example, by your photos), all the cells that would have been affected by topical corticosteroids, and all of the dermal material–apart of the extra-cellular matrix and other permanent structures–that would be sloughed and replaced, should be fully sloughed and replaced within three to six months at most. Topical steroids do not last beyond two weeks in the dermis, and that requires use of class 1 products like clobetasol. So, year-long (and longer) ordeals in “TSW recovery” are a real mystery to me.

    And, the sheer amount dermal sloughing associated with these accounts could also be due to cell death from microbial exotoxins and superantigens, or from a severe and ongoing allergic immune response to other triggers where macrophages, neutrophils and other immune killer cells are attacking dermal cells marked with an abundance of any number of foreign molecules.

    I will admit that for a small percentage of individuals, steroid allergy could be a major factor is worsening mild eczematous inflammation into an uncontrollable condition. But, I still can’t see years of misery following the removal of topical corticosteroids as a result.

    Other factors must be in play.

    Now, what I think I’m trying to say, here, is that while I admire and respect you (all) for thinking about and trying “outside-the-box” measures to combat the unbearable torture that is severe eczema, it’s my impression that the near total diversion from traditional medicine can be detrimental to success, and can unnecessarily prolong the suffering. And, in some cases even prove fatal.

    Again, I am not saying you should be using topical or systemic corticosteroids. But, I believe that, at the very least, there should be a balance between the desire to avoid recently controversial treatments (steroids) that have known and common side effects, and the willingness to make use of other specialties in the medical field that may possibly reveal the actual cause of persistent inflammation, or, at least help to do so.

    The root cause of eczema, unfortunately, is primarily genetic. So, for us, there will never be a “cure” without genetic modification or gene suppression–and, this is very far away at best. Recurrent episodes of eczema should expected, not feared, and we should all have the ability (both institutionally and emotionally) to use all the tools available to us to manage the condition each time it presents; and, to minimise the duration of flares and the intensity of suffering. But, expecting our body to figure it all out on its own is very unlikely to be a viable course of treatment for the majority of us. Do some of us get lucky? Of course. But, the number of lucky individuals, who stop steroid use, and other medications, and never see another flare, have most likely overlooked a change in their lifestyle that was pivotal in this success. The rest of us need to actively search out that pivotal, magical gem.

    You are perfectly justified in trying a course of treatment that you believe may hold the answer to your suffering. But, what I would like to suggest to you is to evaluate the quality of life that you experience under this treatment against the prospect of shorter-term improvement with a less “idealistic” course of treatment.

    Quality of life is an extremely important part of healing. And, when treatments are ineffective–regardless of what treatment that might be–it can lead to a serious degradation not only in the condition, itself, but in all aspects of life. And, after reading your “Day 280” post, you have obviously already encountered this.

    Don’t despair, though. Don’t become desperate. I know several people who have tried the “TSW” thing and essentially “failed” after trials of various lengths. Most of them found reprieve by returning to traditional medicine, but changing the mode of treatment. In a few cases this ended up being a return to steroid use–but, in minimal amounts–combined with topical antibiotic treatment. Again, this may not be the course for you; but, from everything you’ve written so far, antibiotics may not be a bad thing to enquire about. Immunology, gastroenterology, and even psychology/psychotherapy are other medical fields that may prove useful to you.

    Non-steroidal medications that could be worth asking about–depending on your ability to afford medical treatment–might be: Xolair, hydroxezine, doxepin, sedating and non-sedating anti-histamines, topical and/or systemic antibiotics, topical calcineurin inhibitors, Atopiclair…

    The point being, you have options.

    I realise that it can be extremely difficult to remain strong and brave during all of this. And, from what you have written you have a lot of obstacles in your way in addition to the eczema. You were proactive (and brave) when you chose to follow the “TSW” road, and again when you chose to write your blog. You are certainly strong enough to overcome the pitfalls of your condition as you “bit the bullet” and knelt down to write your latest entries. You are open an honest enough about the shit you endure on a personal level as a result of this torture so I am certain that you have enough hope and determination to rise above this hellish experience and fight a while longer.

    I know that “TSW” supporters have a set mentality about what works and what doesn’t, but I don’t believe that this limitation on options is truly best. Complementary combination treatment has been proving more successful than monotherapy in managing eczema. There is nothing to suggest that this methodology is incompatible with topical corticosteroid avoidance, and I am confident that at least some complementary treatments can be found to greatly improve your condition, as well as your quality of life, without violating your core aversion to steroids. It may take some trial and error, but I am certain that viable treatments are there for you.

    Again, I apologise for anything I may have written that you might have found offensive. I didn’t intend this to read like an intervention. I do hope that everything in your life can be resolved sooner, rather than later. Stay strong, and stay open to every option you can make use of. You deserve to get better, and your son deserves to be with his mother. Don’t give up.

    Like

    • SueAnne says:

      Hi Greg…. Wow you can really write well, even for comments!

      First of all, I really appreciate you at taking time to write me your point of view and I take no offence to differing opinions. Every such opportunity is a time for me to re-evaluate my opinions and have a deeper understanding to this TSW thing. I take this positively and with an open-mind. So relax, no offence taken!

      Secondly, I must note that English is not my native language and whatever TSW understanding I have so far is due to research I do in my limited language liability and personal observations. I also do not express as well as you do.

      I do agree that many a times I question myself. In this advanced medical age, it is baffling that one has to endure such horrendous amount of pain for such long periods to gain healing from a skin condition that has always been there. There must be a better way!!!! Also, who are we laypersons to question the judgement of professionally trained, learned educated doctors and in turn judge them as irresponsibly dishing out prescriptions of steroids. There must be really valid reasons why they do not believe the existence of TSA. It is times like this when I am hospitalised for eczema herpeticum that TSW seems senseless to me. Unwarranted amount of pain for no reasons.

      What I think MAY be a valid argument for TSW is, that we are trying to “re-train” the skin into regaining it’s normal functions of sweating, creating oils, having elasticity, and protective barrier. I know that steroids do not stay in our system for more than 6 months. And what TSW is showing is not that the steroids are still in the body causing these symptoms. It is showing that with long term steroid usage, many function of the skin is no longer active as it relies on steroid to get these covered. Think the steroid strength that increases for every prescription, think cancer treatments, think high-blood pressure treatments, or any other chronic condition treatments. Doctors either alternate the available medications, or increase the dosage / strength of the medication. Our bodies do have the ability to “overcome” whatever treatment was used and adapt to render the medication useless for at least a period. TSW is trying to reverse this process. We are forcing the skin’s normal functions to “wake up” and be “active” again as the option for steroid is not there. The body slowly realises there is no other resources to tap but its own functionality. Healing begins.

      Again, I will like to stress that this is my own observation of TSW cases. I am not supporting my views with any quotes or make any references that a learned education individual should…. And although TSW is tough, I must at least try. If I tried and failed, at least I know I tried to gain the freedom I yearn for.

      And you are right, I DO have options. I am taking anti-histamines (puriton) every night and am under the care of Traditional Chinese Medicine Sinsehs. I constantly moisturise. I am not leaving my skin totally untreated.

      What I agree with you is I cannot make sense of moisturise withdrawal. Eczematous skin is hungry for moisture and cannot do without it. I think its insane to increase the already bad amount of pain without steroids. And I really do not mind being addicted to moisturisers, if that is what those going through MW is trying to achieve. No real harmful side effects there.

      On a side note, I do not know if you remember telling me my perioral area rash is due to food allergy. I looked into it and stopped taking any offensive foods for a week and whoa la! The rash subsided.
      Another thing is you alerting me about my possible staph infection and heads up on herpeticum. Here I am writing to you on a hospital bed warded for eczema herpeticum.

      So Greg, keep researching, writing to feed leaches like me who are too lazy to do their own research!! HAHHAHA, ok jokes aside, THANK YOU Greg for all the heads up! AND encouragement!I do hope I continue to be strong like you perceive me to be. I hope I do not fail my son, my hubby, my parents. Please, do pray for me.

      Also, should I myself have offended you due to differing cultures / expressions, please pardon me.

      Like

      • Greg Stewart says:

        Absolutely no offence taken, or even perceived. I have simply found that when I bring a competitive opinion to the “TSW” table, I need be very prepared for hostility. I had hoped you were more open minded than most on the “TSW front”, and I’m happy to see that I read your personality correctly. But, I chose to be as cautious as possible, just in case.

        It’s more the general “cult mentality” that I see in much of the “TSW community” that baffles me. And, from your response, I can see you don’t fit that mentality (you would have chewed my head off from outrage).

        And, don’t be so hard on yourself. Your own grammatical skills in English are better than possibly half of native-born Americans. With the crap I often read, I find myself shaking my head and repeating “English is a dying language”. Also, I’m exceedingly prone to run-on sentences, poor use of conjunctions, and rampant use of commas.

        I’ve been aware of “TSA/TSW” for almost 10 years, now, and I’m actually quite comfortable with the underlying theory that drives this movement–despite that I don’t actually believe in it. I’ve read all the papers by Rapaport, Kligman, Fukaya, et. al., but I am just not convinced by their science that this is not simply a misdiagnosis of myriad other factors that could present exactly as they describe.

        Rapaport has even gone to point at elevated nitric oxide (NO) levels as a specific indicator of “TSA”, but he fails to point out that NO levels are similarly elevated in people who frequently eat chocolate, among other things. He also fails to demonstrate that he’s isolated his test subjects from NO contributing factors such as chocolate consumption. So, I’m just not on board with it.

        Another point Rapaport, et. al., make in support of “TSA” (which you brought up) is the lack of responsiveness to corticosteroids in the patient with eczema; the need for increased doses, or higher potencies, in order to maintain a certain level of eczematous inflammation/healing, or a complete lack of benefit from corticosteroid application. Unfortunately, here, steroid allergy can cause increased inflammation as dose increases and be completely contraindicated in the patient in question. Also, contributing to this perception of steroids being the problem is the fact that microbial infections can reduce the skin’s response to topical corticosteroids contributing to the appearance of the steroid being either ineffective or causal of the inflammation. As much as 90% of eczema patients are colonised with Staphylococcus aureus, and as much as 60% with Group-A Streptococcus. These are exceedingly good odds that microbes could be culpable.

        There’s a lot more, but I can’t go on.

        I don’t pretend that corticosteroids are without issue–you’ve probably read my dissertation on corticosteroid truths–and, I will admit there are certain dependency issues with respect to misuse/abuse of topical corticosteroids in the treatment of eczema. But, the HPA axis is remarkably adaptive and tends to right itself rather quickly when given the right conditions.

        My biggest issue, I guess, is the overwhelming occurrence of self-diagnosed “TSW warriors” that often refuse to speak with physicians unless their belief in “TSW” is reciprocated. These are the people that scare the “bejeezus” out of me, and who sadden me to no end when it’s their infant or toddler-age children who are being subjected to this pain and suffering without medical supervision or proper diagnosis. My brain wants to scream “Munchausen’s!”, but no one is going to hear me.

        Unfortunately, there is only so much “retraining” the skin will accept before that DNA blockade is hit.

        Many physicians, also, simply don’t know what course to take. Eczema is very problematic in that many standard courses of treatment simply don’t work for many patients. And, biologic alternatives are only just making it past the FDA in the US, let alone into production in countries that don’t have our bureaucratic red-tape.

        Even my dermatologist, whom I respect very much, is not always on target with the correct diagnosis. This isn’t her fault; it’s because the symptoms many various diseases present similarly and differential diagnosis tends to favour the commonly-seen, before the rarely-seen, causes. She was actually suspecting drug allergy over infection, but took a biopsy because the hospital diagnosed viral infection and she simply wanted to rule that out. It turned out the hospital was correct, but don’t fault my dermatologist for leaning toward what her experience suggested was the more likely diagnosis. She was open minded enough to explore a conflicting diagnosis and follow that through.

        My belief, actually, is that the role microbial infection and colonisation is far less well understood in the pathogenesis of non-responsive eczema than it should be. A few physicians have been publishing a variety of studies into this effect–mostly related to S. aureus–but, more work needs to be done. There definitely appears to be a direct relationship between microbial flora of the skin and the severity and responsiveness to the treatment of eczema.

        Anyway…

        I am horrified to hear that you are now in hospital with eczema herpeticum. But, I am glad to hear you went, and that you are being treated. You know that can sympathise with you on the pain. Daily higher concentration bleach baths worked exceptionally well for me in stopping my fourth recurrence completely–after the three previous episodes required acyclovir runs. Have you begun the bleach baths?

        –Greg

        Like

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