Monday, November 21, 2016

Friday, November 21, 2016 - Knocking on Wood

A quickie.  I feel fantastic!  I'm better than before the last flare and I'd say I'm 98% healed, the 2% due to a couple persistent itchy spots, the worst of which is the top of my right foot.  If I scratch myself anywhere that area will break out for a few days, but so far nothing persists more than that.


I'm really reluctant to post here lest it jinx me, but then I am always saying I do not believe in the supernatural, so what the heck.  I fully suspect that I will go through at least another "anniversary flare", and if it follows past ones it will happen next summer (my 4th year anniversary will be July 9, 2017), and will be less severe than prior flares, but take longer to get over.  So, I am not declaring victory just yet.  But damn, it feels so great to feel normal!


An interesting side note that other vets will likely appreciate.  I have heard that TSW survivors acquired a sort of PTSD, and I always thought that was a bit out there.  I mean, sure, it has been a tough road at times, but nothing like many, if not most, folks have gone through or, in the case of my wife Robin, will go through for the rest of their lives.  Yet when my sister in Seattle called me and asked how I was doing, I had an emotional meltdown.  I also find it difficult to post here, even though I have much to talk about, and many more watches to show!  Haha!


That's it for now other than to wish everyone an awesome holiday season and may great healing be coming your way!  Hugs from Texas!





8 comments:

  1. Congrats Dave! I know what you've been through and am happy for you.

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  2. Thank you Dan! Good to hear from you. How are you doing? I'm still hovering at 98% which may be a permanent state and I'm okay with that. I will be going on a cruise shortly and I am eager to see what the increased humidity and exposure to the ocean will do, as it has caused improvement before. Happy new year and here's to more healing!

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  3. Hi Dave, I got your reply from that older post and thought I'd write here. I haven't been doing too well lately. I got hit with a 3 year anniversary flare this summer (I guess), and managed to spill gasoline, heating oil, and other crap on my hands working on the house as well. Needless to say, that didn't help matters. Late in the year I decided to try a course of prednisone to see if it would get me over the hump. My skin cleared and I got relief for about a month, but once I tapered off I not only regressed back to where I was, I regressed much further back. Rashes broke out everywhere. My hands got so bad I could barely hold a coffee cup. It's been about 10 weeks since my last dose and I feel as though my skin is finished falling apart and back to healing. I started doing frequent dss baths again and experimenting with a Calendula salve.

    I just read your entire blog trying to find out what you did moisturizer wise and couldn't find anything. Did you use moisturizers the entire way? I know how bad off you were and I experienced all the same symptoms. The most dreadful bone deep itching one could possibly imagine. The emotional wrought this brought on after many months of severe pain. The depression, etc. Rereading your blog reminded me of what we went through in excruciating vividness!

    Anyhow, I found out the hard way that a short course of oral steroids is a horrible mistake for anyone who is in tsw, even near the end, and I want to spread the word. I also am very interested in how you healed to where you are at right now. Since I'm trying moisturizers for the first time in 3 years I wanted to find out if you used them in the last few months. Your healing gives me new hope at a time of near desperation, especially knowing how bad off you were. And, after reviewing your old pictures today.

    I honestly think my overuse of ts screwed up my immune system's ability to manage my eczema (hadn't had it since I was a teen, but do now) and psoriasis. And, I now have asthma, something I have never had but runs in the family. Best, Dan

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  4. Hi Dan! So sorry to hear you are not doing well. I'm starting to think that some people's endocrine system is so messed up that they will never heal. I hope you are not one of them and that you will heal soon, and if not soon, eventually.

    As far as what I did to heal (knock on wood!), to be honest I did absolutely nothing. I tried MW a couple times and it was awful. Our discussions about it are buried in the comment sections of posts made about when my mother was getting very ill. Whether or not it would have made me better if I stuck with it is moot at this point. I hardly use any moisturizer at all right now. The top of my right foot is the last bastion of itchiness and if I succumb it and scratch I will get a dry rash. I will put either sunflower oil or unscented Albolene on it to help the dryness. Whether I itch or not doesn't seem to have a relationship to dryness. I really think the dryness I am experiencing is just normal winter dryness, as here in Texas it gets quite dry in the winter. I have a pool and it loses water from evaporation faster in the winter than during the hot summer.

    I am getting more convinced that there is nothing really anything we can do to heal faster (other than not using steroids again of course) and that our greatest enemy is stress. I think the fact that I didn't stress over MW or diet helped me, but then I don't know how I would have done otherwise. The "false causal relationship" problem that this rollercoaster ride has is a huge problem for those that think they can somehow control their TSW destiny.

    Hugs from Texas!

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    1. I'm amazed at your progress! I just went through your blog again and what a difference from just a year ago. And what's fascinating to me is you did it using moisturizers. Doesn't seem to make a difference in healing time at all. I still maintain going without them from the get go makes for a far easier recovery. But I feel that is a personal choice.

      I'm doing better and slowly improving again. I think you are right about stress. I feel it played an important role in my hands deteriorating again this past fall. Also, depriving oneself by going on a strict diet is likely a waste of time and counter productive as well.

      If it weren't for people like us who have done blogs, and especially Itsan, tsa/tsw wouldn't be a recognized condition. But now "topical corticosteroid syndrome" is officially a recognized medical condition in the USA! So, I wanted to thank you for doing a blog, putting up with my BS, your kindness, and especially a huge thank you for showing the world that one can recover from the damage topical steroids cause, whether it be short or long term use. Your blog has made a huge difference for millions of people and the millions more who follow. Best wishes, Dan

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    2. Thank you Dan! Hugs from Texas!

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  5. Dave, I want to try the Allegra itch cream for my TSW daughter. Do you still recommend it? Thanks

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    1. Hi Alisa! Sorry, just now saw this. I still use Allegra when I have an itchy spot. I'm not fond of using it, as it has a pretty big list of ingredients (I am allergic to some cosmetic ingredients), but it is one of the few products that work for me. It is getting increasingly difficult to find, but is still available on Amazon. I am overdue for a blog update, and will expand on Allegra when I do. Hugs from Texas!

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