I am better!
The infamous one-year flair was a doozy, but I am improved to a better state than I was before the flair. I am functional! Since my last post:
- We travelled to Oregon for my Mom’s memorial service. It was an awesome celebration of life.
- We celebrated my grandson’s first birthday. Cutest kid in the universe.
- We attended Texas Tech’s first football game of the season to watch my daughter march. I missed all last year. We won!
- We travelled to Washington for my niece’s wedding-in-the woods. It was epic!
- I hosted the Texas Hold’em tourney at my house with co-workers for the first time in a year. I won the first game with 7-2 offsuit!
- I am completely off Ambien. I started getting scary vertigo and decided I’d rather not sleep, but I have been sleeping pretty well without it.
- I am using much less hydroxyzine. That’s the only drug (other than thyroid pills) that I still use.
I still have a ways to go. My skin is better, but still a mess. The itching is still crazy, but before it was turbo crazy. I’d post pictures but I look pretty much like previous pics except the eye poofy thing is gone. I am stunningly handsome again.
My heart and best wishes goes out to all TSW warriors. Hugs from Texas!
I am two weeks from my first year anniversary. Signs that I was entering a new flare started showing up a few days ago. Up until then my symptoms have been reduced to my appendages, but I started getting a rash back on my abdomen along with itching and wetness. My eyes started swelling and my neck has broken out. I itch everywhere. Every. Where.
When I woke up today (at 3:00 in the afternoon), I could not open my left eye. It was welded shut.
At least now, how I look and how I feel coincide.
I am back to where I was before the last flare and I am making slow progress. I went to see my dermatologist team at UT Southwestern, and they were pleased. Yay!
Temperature control issues, cold sweats, electrical jolts, and itching on my chest and stomach have all but gone away. My extremeties continue to be a problem, with sometimes painful cracking on the bottom of my feet and hands.
My lack of ability to resist scratching continues to defeat me. Sigh. I think most of my skin issues would go away if I could just stop the damned scratching. The itching, especially on calves and feet continues to defy description. Oh, and there's still skin flakes flying everywhere.
I just don’t know if the phototherapy is helping or not, but the doc wants me to continue. I started out at 20 seconds per side and now up to 4 minutes. I will keep ramping up until I burst into flames I guess. It does feel good to do it, and there’s a nice scent like frying bacon afterwards.
Mentally, I am defintely better. Example: For years I have played in a semi-weekly poker tournament with a bunch of great guys from work, and I was able to play again last week for the first time this year. I did not play very well, but I didn’t before TSW anyway. I’ve actually saved a pretty good chunk of money by not playing all this time. Haha.
I handed my dermatologist a stack of printouts of topical steroid withdrawal reference material (from the ITSAN reference material page), and she said she would read them. I believe she will. She is genuinely interested in what I am going through. I do not think that she and the department chair expected me to heal without the use of steroids. I told her she has an opportunity to become a TSW advocate and she basically said “I’ll let you know”. I did not push it. I’ve got a follow-up appointment first week of September and it will be an interesting discussion.
In the meantime, my battle with Baby Pibu has become frustrating. They continue to sell the steroids-for-babies “Rash Relief” cream in a couple gift sets, and they are in ignore mode. They shut off comments on the Baby Pibu Facebook page, as did MetroDerm, the office where Dr. Kim (the founder of Baby Pibu) works, after I made a post there. I have been acting on my own behalf, but have been encouraged by the ITSAN board to lead an advocacy group there. I’d like to, but I’m not sure how good I would be at it. We’ll see how it goes with Baby Pibu.
If you are from Baby Pibu and are reading this, for the love of God please stop pushing drugs on babies. Please. I do not think I have ever been this upset about anything, and I swear I will not give up until Baby Pibu is steroid-free. If you somehow manage to silence me, there are over a thousand ITSAN TSW Warriors and parents of children suffering through TSW that will happily take my place.
I'm slowly recovering from the last flare and don't have a lot to share that's new, so I thought I'd share this:
Although I have skin flakes that look like this, this is actually a corn flake! Hahaha! I freaked my daughter out by pretending to pull this off my foot, and she was like "OMG Dad!" when I showed it to her. She almost blew chunks when I popped it into my mouth. Hahaha! Maybe I'm not the best father in the world after all.
Here's some obligatory hand and foot shots. I actually feel better than these look, however the return of the elephant skin is annoying.
I'm in a bit of an experiment right now as my prescription for hydroxyzine ran out last week and the doctor has not renewed it. Plain old ibuprofen seems to help, but it is hard on the liver. I'll take it easy. I still take half an Ambien at night, and it's very effective. It also causes me to have very lucid dreams. I actually had a dream the other night where I realized I was dreaming and could do anything I wanted. I'll keep this family friendly and not say what I did.
I think I am starting Flare #3. Oh joy. What appears to be pre-TSW eczema is covering most of my arms and legs and I just now noticed some elephant skin action around the knees. Itching has remained insane, especially feet and legs, but now I get wet everywhere if and when I scratch. Crap. Oh well, just one more bump in the road to recovery!
It could be stress related. The last few weeks have been a little rough. I miss my mom.
The jury is still out on light therapy. It’s been two months, but I just don’t know. That’s the trouble with TSW… it’s so dynamic you never know what is cause and what is effect. Even though I am struggling, who’s to say I wouldn’t be struggling much more without light therapy? I think the itching is less on the nights I do the therapy, so I am sticking with it.
* I’ve got this line from Michelle Chamuel’s “In My Head” stuck, well, in my head. The song relates well to TSW and I get verklempt when I listen to it.
The GOOD:
I am better [cautious exclamation point]. I at least feel as good as I did before the last ginormous flare. A few things have happened since I last posted.
First, of course, is time. From all I can gather about TSW, the one and only thing that is sure to bring healing is time. Lots of it, which I happen to have. Good thing, as I am expecting at least another year of this
Second, is the light therapy that I have been doing for a month now. I started out at 20 seconds per side and have worked my way up to 90 seconds. I hear it takes about a month for good things to start happening, and although I can’t know for sure how much it has helped, if any, I think that it has. That’s half the battle.
The third is that I am moisturizing much less and have switched from Vaseline to sunflower oil. I’m not really on the “MW” bandwagon, I simply feel that moisturizing is not needed as much. Also, I’ve read some pretty nasty things about petrolatum and some really good things about sunflower oil, so I am giving it a shot. I don’t use much; basically to replenish oils lost during my daily shower and on my hands after using and washing them. My hands still end up with cracks at the end of the day, so at night I oil ‘em up, put on cotton gloves, then disposable vinyl gloves over them. The cotton helps my hands breath better, so in the morning they aren’t all white and sweaty like they were with just vinyl gloves, just pale, damp, and, well, better. Thanks to Dan, by the way, for advice on cotton gloves and his research regarding petrolatum.
The bad:
My ankles and feet are still pretty bad. And they hurt. The bottoms of my feet are about half covered with what looks like good ol’ conventional eczema.
Although my itching is less primarily because of brute will-power, if I succumb and scratch the explosion of almost unbelievably intense itching is spectacular, especially on my lower legs. I keep saying this, but it’s true… only TSW warriors can understand what this is like.
I am still using Ambien, but only half a pill. I will probably try going without when the bottle runs out, which will be in a week or so. Ambien has been extremely effective for me, and the sleep it provides probably should get some credit for my improvement, which is why it will be hard to give up. I am also still taking quite a bit of antihistamine hydroxyzine (Atarax), probably 5 or 6 25mg pills per day.
Lots of flaking! I have had to blow skin flakes off the keyboard to see the difference between the comma and period keys, now its the "M" and "N" keys.
Observations
Since starting TSW, I have noticed that my symptoms are symmetrical. In the good ol’ days of simply fighting eczema, I would get it, say, on one finger or on one eyelid. Now, everything I have is virtually identical left to right. I always post pictures of only my right side, but the left side is virtually the same. I wonder if this is a hallmark of TSW.
I have also noticed that I seem to be healing top to bottom. My neck and shoulders, once a trouble area, are now almost normal. The insane itching on my chest moved to my stomach, then thighs, then calves, which is where it is centered now. I am maintaining my belief that my body is basically emptying itself out of the symptoms of TSW. Okay, my hands are a bit of an exception, but then they are always getting into things.
Bottom Line: I have soap in my hole!
One of my hobbies is skepticism and as such I am familiar with homeopathy (not to be confused with naturopathy). I encourage anyone considering homeopathy as something to be used in place of conventional medicine to do some neutral research. A good starting place would be to read the entire naturopathy article in Wikipedia.
I am a big fan of skeptic James Randi, a former magician that has turned into an investigator of the paranormal and pseudo-science. He is known for the Million Dollar Paranormal Challenge where he will give $1,000,000 to anyone that can prove paranormal anything under controlled conditions agreed to by both parties. He hasn’t paid anyone.
He is also known for his stance against homeopathy and one of the stunts that he pulls is to take massive overdoses of homeopathic “remedies” such as sleeping pills. Nothing happens because true homeopathic products rely solely on one thing: the placebo effect. That said, I would not recommend doing this as many products labelled homeopathic contain actual ingredients.
What’s ironic about all this, and one reason I posted here, is that if I were the eczema laden child of parents that believed in homeopathy and they gave me homeopathic remedies instead of conventional medication, I would not be going through the living hell of TSW. It just so happens that the cure for what ails us is to do nothing at all. Homeopathic remedies do this quite well.
I added the following one day later, after a couple of responses from those with positive homeopathic remedy experiences:
Please let me know if my posts are inappropriate or in violation of ITSAN rules or their intent, as I love and respect ITSAN dearly and do not want to jeopardize my relationship with it in any way. I will post this on my blog too if anyone would like to discuss this further there.
If okay, I would like to add a couple thoughts. First, for anyone that has had a positive experience with homeopathic remedies PLEASE read the entire article in Wikipedia and understand the 200 year old principals of how homeopathy is supposed to work before endorsing it. Please. I refer to Wikipedia because although not perfect by any means, it is the most neutral source I know and has plenty of verified references. The internet is bloated with BS, including convincing sites promoting homeopathy. If you dig deep, however, you will find there is virtually no peer-reviewed double-blind trials that support homeopathic principals. None.
Some homeopathic remedies actually work not because of the homeopathic ingredients, but because the inactive ingredients provide relief. Eye drops and nose drops are perfect examples because you could literally use plain water or saline and obtain positive results. Also, some homeopathic remedies include conventional medicine or naturopathic ingredients that does actually work. That reminds me, do not get “homeopathy” and “naturopathy” confused. They are different in the most fundamental ways, yet many people do know the difference and use the terms interchangeably. I was having a discussion with the manager of my local CVS, and even she didn’t know the difference. I was starting to get upset that CVS sells homeopathic remedies when I realized that behind the front counter is a wall of cigarettes. They only care about our wallets, not our health.
Most homeopathic remedies, especially those for children, are for conditions that are temporary, such as colds, that go away anyway. “Tag Away” as seen on TV is an exception to this and the TV ads are convincing. Yet look for neutral reviews of Tag Away, such as on Amazon, and you’ll find that the product simply does not work at all. And good luck getting your money back.
Anyway, I could go on and on, but there’s really only two things to remember:
1. Do not confuse homeopathy and naturopathy.
2. Understand how a product or method supposedly works before using or endorsing it.
I feel better now.
The GOOD:
Hands are much better. If they become cracked I have found that wearing vinyl gloves for the night (without any moisturizer) will quickly calm them down.
The BAD:
I have been on phototherapy for 2 weeks and was really hopeful it would make a difference. Nothing yet. I am thinking that it will just take a bit more time. I started out a a very low dose (20 seconds) and am increasing the dose by 15% each time. I have yet to get to a point where I show signs of turning red, and my understanding is that I need to be at or close to that point for positive effects to show up. Onward.
My legs and feet continue to be the worst, with insane itching and pain after I give in and scratch.
I have now taken my second phototherapy, and to be honest it has made my itching worse. I was anticipating that, as I have heard that sometimes it makes things worse before it makes things better. I had a particularly intense itch session this morning and my legs are now raw.
In the middle of my itchfest this morning I was reminded of my oldest brother Paul, pictured above. I am the youngest of five and he is the oldest. He is also on my short list of most admired people, and I love him dearly. About 10 years ago, when he was about the age I am now, he died from complications of type 1 diabetes. He decided he was ready to be with God and stopped his dialysis. He died peacefully and honorably surrounded by his loving family and friends.
In the final years of his life his circulation became bad enough that he lost fingers and eventually had both legs amputated. It didn't slow him down one bit and I never heard him complain about it. Not once. He felt he could be an inspiration to others. He was, and continues to be.
Now, when my legs itch I can remind myself that they are simply shouting at me that they are there. I have legs.
I found this Bad Boy on eBay and am now the proud owner. It's a nearly new National Biological Panosol II 6 footer that will pump out 600 watts of 311 nanometer narrow band ultraviolet light, enveloping my poor wretched body with the warm loving healing power of the gods!
I have full cooperation from my dermatologists at UTSW, which is a good thing since it is a controlled device that requires some secret code the doctors have to get from the NSA or something. I have to go in to the UTSW phototherapy department to get some training before I turn it on. It seems they don't want to fry myself to a crisp. I appreciate their concern.
I have high hopes, but realistic expectations. Many folks have claimed that UV-B NB therapy greatly helps, especially by reducing itching, but others claim it does not help. We shall see.
By the way, my hands are significantly better. I did a couple nights of Vaseline with surgical gloves and the cracks went away. I think most of my problems now are exacerbated by my inability to resist scratching.
Until now, I have never been very sympathetic to those with a physical addiction. Take smoking for example. I’ve always thought it should be simple to quit. Just don’t put the damn thing in your mouth! Easy, right? Or take over-eating. Just don’t shove that food in your pie-hole! Easy, right? Alchohol problem? Just don’t pour the damn drink! Easy, right? I mean, it’s a physical act that your brain decides to do, apparently with your consent. Geez, people, you should at least have control of your own damn hands!
Now I understand. As I write this, my hands itch something terrible. I know that if I succumb and scratch it may feel awesome at first, but I will pay dearly shortly thereafter. Solution is simple… do not command my right hand to move to the left hand and scratch. Easy, right? To me, not only is it not easy, it is impossible. I am doing it right now! I simply cannot help it. This lack of control drives me insane.
Now my hands hurt. The cracks have gotten worse and are oozing. My stomach and legs get hot and sweaty, apparently in eager anticipation that my hands may pay them a visit too. I have to blow the skin flakes off my keyboard to make out the difference between the keys.
I promise that when I am done with this that I will have a sympathetic understanding of addiction. I will no longer be smug in my feeling of superiority over those weaker than me.
I am the weak one now.
-This flare is kicking my butt. It’s almost like I am back to square one. Temperature control issues, night sweats, the shakes, lumpy elephant skin, itching out of control, cracked, oozing skin especially on hands and feet. If I succumb to the itch and scratch even in one spot my entire body becomes wet. I am back to taking baths and back on Ambien. I am eating everything in sight, primarily as a distraction, yet have lost some of the weight I had gained back. The hydroxyzine doesn’t seem to be working as well as it was, so I have been trying other things such as naproxen. I am missing a lot of work.
My hopes on getting to Seattle soon does not look good, and that is the hardest thing of all.
The Good:
The Ambien works well. I am hoping getting some sleep will help turn this around. Hair has stopped falling out. I am enjoying watching the Olympics.
I am trying to keep a positive attitude, but damn, this really sucks. The encouraging posts on the ITSAN forum from veterans that have made it through TSW have really helped to keep my sanity.
Other stuff:
I am trying far less moisturizer this time around to see how it goes. The only thing I have been putting on is Eczemin Cream, and only when I have a bad itch. It seems to work as well as Allegra cream, but instead of antihistamines it contains the anesthetic pramoxine.
In researching UV-B narrow band light therapy, I think I want to give it a try. I found a really good deal on a nearly new 6 foot, 6 bulb unit for home use for around a grand, but I am having trouble getting ahold of my dermatologist. The machines have an interlock that requires a digital prescription key, so I need my dermatologist to prescribe it. She did want me to try it a few months back, but my insurance rejected it. Going in to an office for treatments would be a royal hassle, and a home unit would pay for itself after a few months, especially if I do not have insurance coverage.
I have heard TSW guru Dr. Rapaport discuss the possibility of infection with a compromised skin barrier. It is generally not a concern. That said, my dermatologist was concerned and took a swab sample from my foot when I was there last Tuesday. I got a phone call today and was told it came back positive for MRSA, Methicillin-resistant Staphylococcus aureus. Great. Now I am on Doxycycline Hyclate pills, Mupirocin ointment, and Hibiclens antiseptic cleanser.
A quick little diversion from my normal posts. This is my Mom. She lives in Seattle and I live in Texas. This picture was taken last Christmas, shortly after her 92nd birthday. Being in no condition to travel, I wasn’t there. I have not seen her since last April and shortly thereafter I began my journey into topical steroid withdrawal.
My Mom lives in a memory care facility and suffers from the final stages of dementia. She has recently had a couple TIA’s, known as “mini strokes” but has recovered . She knows who I am when I call, and although much of the conversation makes little sense, the message that she loves me comes through loud and clear. I believe she understands that the love goes both ways. I have tried to explain to her what is happening to me, but she does not understand other than realizing I am trying to get well enough to make a trip to see her.
I have an unusual relationship with my Mom in that when I went through a divorce in 1999 I moved in with her for a couple years. As humiliating as it can be to be a 40-something guy living with his mom, she was the silver lining in a dark cloud. We became best friends. In one of our last lucid conversations, she explained that was a very special time for her.
Although my divorce agreement had a provision that neither parent could move more than 50 miles away from each other for our children’s sake, 10 years ago my ex-wife sued me to get legal permission to move to Texas with my two daughters. She won, and that is why I live in Texas. Fortunately, I have an awesome and supportive wife and stepdaughter that supported the move, and we have made lemonade from lemons. The hardest part by far has been living so far away from my Mom and siblings.
I bring this all up because throughout my adult life, my Mom has occasionally told me something that at the time sounded like an insult, but only now, going through TSW, do I appreciate it for what it was.
She told me that I would be hard to pick out in a crowd… that I was so… normal.
Nothing would make me happier than to be a normal, average guy that blends in with the crowd. That would be fabulous, and when I get there again, which I will, I will embrace it as sweetly as I do my Mom.
Secondly, I was there for a follow-up and to talk to her about my recent flare. I was pleased that there was no mention whatsoever of wanting me to go back on steroids. Also, she was excited about some kind of water therapy and is going to send me some info. She respects my position on TSW and seemed very interested when I mentioned the latest topical steroid study being conducted by the NEA.
I know this is a touchy subject, but I wanted to talk to her about moisturizer withdrawal as well. She was emphatic that there is no way I should not be using moisturizers for one reason: My skin barrier is compromised. She said it is essential I keep my skin moisturized and soft and with a barrier of Vaseline. She was pretty concerned about fissures in my feet and took a biopsy and is putting me on a round of antibiotics.
This was my third attempt at moisturizer withdrawal, and for me it’s a no go. Maybe later when my skin is in better shape. Every time I have tried it my condition has become dramatically worse, and I am convinced that this last attempt has put me into a flare spiral that is going to be tough to recover from.
What's stupid about it is that I have been trying to heal enough to make a trip to Seattle to see my Mom. I should have waited. Hopefully, I will improve soon, but it feels like another flare has begun.
