Friday, 18 October 2013

Rambling Ramble: 5 Months TSW

This coming Tuesday will mark 5 months off topical steroids. :)

Not a great deal has changed in the last couple of weeks. I'm still getting the scabbing on my legs and I just can't leave it alone because I'm a silly thing! I also have patches on my arms, torso and back that I keep having a go at but hopefully they will begin to clear up again soon. My face is also a source of annoyance. For a good month now it has been pale albeit dry but definitely vastly improved, this past week I have had small pustules popping up all over my face again, just like how it did during the MRSA outbreak. I'm still taking the antibiotics for it so hopefully it will calm down soon. I'm not sure if these spots are occurring because of the said MRSA or because I started using moisturiser again.

I've also used it on the other areas to stop the dryness and they appear to have become even drier and itchier. There is a lot of talk floating about right now about the effects of paraffin based moisturisers and how they affect the skin barrier and in turn cause a secondary withdrawal. To me, it all makes sense, as paraffins are synthetic products so it is no wonder that our bodies reject its application, but it is then trying to find a natural moisturiser that will work that is the next step to undertake.

A few months back I was sent some natural products to try but was reluctant to give them a go because that was around the time that I was suffering from head to toe and kept being infected with herpeticum. Now I think I will try to give them a test drive.

In other news I went to see my derm nurse this morning for a catch up. I am pleased to report that I don't have an appointment for another 2 months! This is huge as obviously I was seeing them every 2-4 weeks to monitor my progress, and going in between visits when I was particularly bad and couldn't wait for my scheduled appointment. Prior to today I hadn't been to the hospital since Friday 20th September. Massive achievement :)

As ever, I hope everyone is having some respite from the evil TSW beast!



  1. Wow, Jen, 5 months already.. congrats :) you have had such a hard go..i was in an awful state but never hospitalized like you were... your so tough.. you will beat this... i will be at the 1 year mark in a week or so.. bizarre how we suffer so.. but in my mind the worst is over for me,, not 100% but i don't think about it anymore.. you will get there as well.. hang strong lovely lady <3

  2. As a lifetime sufferer of eczema I would like to share with you what may contribute to the root of the problem with eczema. In this post you mention that you are on antibiotics again.... are you aware that the digestive system gets messed up from the antibiotics killing off your good bacteria? This is what is part of the syndrome of eczema. I would like to suggest some natural antibiotics using garlic (and you can get it in tablet form) and also grapefruit seed extract (sold as GSE in healthfood stores) are both excellent ways to help fight infections, and are considered preventatives to bacterial and viral infections.

    Next, is to share with you that your skin is a second liver of sorts, because you do not have the right bacteria in your gut to digest your food, your body is performing a histamine reaction to the undigested proteins in your blood that pass through the cell walls and out through your skin while your immune system goes crazy to respond to these 'foreign objects" with the inflammation, itchy skin, etc. I've lived through painful nights and insufferable days of the blisters, itching, oozy, flaky, burning, cracked skin. I started having eczema after being given antibiotics as a very young child for bronchitis, and my life has never been the same after that....fortunately, as I grew up I read and discovered things that have helped clear it up. I urge you to replace the flora in your gut by taking probiotics. You can get them in pill form (kept refrigerated) or in homemade yogurt and kefir. (commercial yogurts contain starches and sugar which makes the eczema worse) these will help restore the good bacteria that is missing from your digestive system. This will help your skin over time.

    I'm fortunate that I quit using steroids as a child, and when I went off on my own, my diet had improved and my eczema ceased. Since that time I've had I think maybe three flare-ups, the worst was when I was overdosed on anti-biotics just before I was married, and by the time we'd been married a year, I ended up with a flare up that was all over my face! --That was 25 years ago, I'm now 50 yrs old. I encourage you on your path to freedom from steroids and from the pains in dealing with your inflamed skin, hopefully from the inside out.

    I'd also like to suggest something I discovered recently that has helped with the flareups, (I've almost cleared up my latest one that has been on both of my hands for 4 months) my husband suggested I use his Head & Shoulders shampoo because it has zinc in it (1% isn't much) but we own a restaurant and I have to wash my hands so many times throughout the day, my condition was made worse by the excessive hand washing! His shampoo helped a little bit so I searched for some Zinc handsoap and found some, its called DermaZinc (its 2% zinc) which the box says it can be used to wash the hair and face as well.... I only just found it this past week, and my hands have cleared up rather quickly this week, and we will now keep the bars where I wash my hands for the restaurant from now on!!!

    May this information be received in the spirit of sharing. And, I hope your healing continues with great success.

  3. Ann is spot on! Bulls eye! Grand slam! I wanted to add just a couple things here. You said "My face is also a source of annoyance. For a good month now it has been pale albeit dry but definitely vastly improved, this past week I have had small pustules popping up all over my face again, just like how it did during the MRSA outbreak. I'm still taking the antibiotics for it so hopefully it will calm down soon. I'm not sure if these spots are occurring because of the said MRSA or because I started using moisturiser again."

    I seem to only get those little pus filled blisters when I use moisturizers, and haven't had them since I went the MW route a couple months ago, except for a few last week, of which I'm not exactly sure why they showed up. I got them to heal by popping them with my fingers and then doing a dead sea salt bath. Then I would apply alcohol free witch hazel to any spots like that and any weepy areas and after a couple days this all disappears for me. I have also used tea tree oil and a Q-tip to spot treat those blisters early on in my tsw. That seems to help. I usually only use it if I feel my skin is slightly infected. I also do a bleach bath once or twice a week anytime my skin feels like it might be close to getting infected. This all seems to help as well, especially when I'm trying to get those blisters or any skin breaks to heal over. I have used antibiotics 3 times, once right before tsw, and twice when I twice attempted MW. After that I have been successful in keeping infection at bay using the dead sea salt baths, and an occasional bleach bath. And again, I don't hesitate to use water diluted tea tree oil on larger spots too if they start to redden and feel sore like an infection might be starting.

    From what I understand, tsw without using moisturizers will likely speed up the process. At a minimum it makes the symptoms much more bearable. Personally, I wouldn't put anything on my skin until I'm in my late 60's when my skin might need the help due to old age. It is my understanding that this is what Dr. Fukaya also believes. I personally believe that moisturizing not only prolongs tsw, but it also makes the symptoms nearly unbearable. It inhibits skin breaks from healing, and it causes way more itching. I have covered this subject in depth on my blog and on a forum. Also, I'm with you on the picking scabs thing. I was and tend to be a habitual skin picker. After reading how important it is to leave that skin alone so the new skin underneath can be protected until it's ready, I have made great strides in reducing this habit. I remind myself constantly to rub, not pick. Just touch or lightly rub. That usually satisfies the urge for me until I can get my mind onto something else.

    I just read your entire blog and appreciate you writing it. Great pictures! It is sickening the way these derms know what they are doing isn't it? They are not ignorant people, and are typically very well educated, so they must know. They also specialize in just one area, the skin, so there is no excuse for not knowing about tsa or tsw. My way of getting revenge on these buggers is to educate as many people as possible on how these so called doctors conduct themselves. Eventually they will be out of work, or if they truly care about skin diseases, they will become naturopaths. Less money, but at least you get to the root of the problem and not just treat the symptoms with poisons, which in turn destroys peoples lives. In most our cases though, the root of the problem is usually just a minor reaction to something in our diet, or an allergy to some external source, and can be dealt with rather easily. Anyway Jenny, best of luck in your tsw! I know you will make it. Please consider MW. Doesn't make sense to clog the skin's pores if we want the skin to breathe and heal.