Friday, December 5, 2014
Tuesday, November 18, 2014
Monday, November 10, 2014
Sunday, November 9, 2014
Saturday, November 8, 2014
Here's the scene I mentioned:
Thursday, November 6, 2014
The one I am wearing below is my present favorite, a Citizen Eco-Drive radio controlled chronograph that my wife got me a few years back. Why am I posting this on my TSW blog? Because I haven't been able to wear a watch for a year and a half and I am wearing one! Yay! I am essential over my last flare and am back on my slow uneven rocky road to recovery. Hands are better as noted, but so is my general disposition. Feet and ankles are still a problem, but hey, they do look better, and I am not taking any pain or antihistamine medication regularly. As innefective it has been, I am knocking on wood like crazy right now.
Here's best wishes for speedy recovery to all you TSW Warriors out there and hugs from Texas!
Monday, October 13, 2014
Friday, September 12, 2014
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!
Sunday, June 29, 2014
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.
Tuesday, June 17, 2014
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.
Monday, May 26, 2014
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.
Wednesday, May 14, 2014
It’s a good read, but the executive summary is this: From Baby Pibu, “Appreciating the concern of possible misuse and abuse of Baby Pibu Rash Relief despite Baby Pibu's efforts to educate the consumer of how and when to use it, Baby Pibu has taken Rash Relief off the market at this time.”
What will happen over the long term and whether or not Baby Pibu will also eliminate the kits it sells with Rash Relief remains to be seen, but I’ll tell you this much: Baby Pibu is my new hobby.
Baby Pibu Rash Relief: a steroid cream being marketed for babies/newborns
« on: April 16, 2014, 11:13:20 PM »
My mom called me horrified today. She has just recently realized my daughter's TSW is a big deal and a miserable experience and is thus starting to do lots of research. She came across an interview about a new product line called Baby Pibu being touted as created by a mom dermatologist, all-natural and safe for newborn skin. There is a rash cream for eczema, and when my mom hopefully investigated it, she found that is 1% hydrocortisone. Here's their product description:
"Baby Pibu’s™ Rash Relief was speciﬁcally formulated with love by a dermatologist-mom with children who suffer from eczema breakouts. It should be used as directed in small doses to treat, nourish and care for inﬂamed, dry skin and eczema affected areas. You can be conﬁdent that this formula is safe and gentle for newborn skin and rest assured knowing that it will soothe their sensitive skin without risk of further irritation."
I get that it says to use as directed in small doses, but seriously. Not okay. I can just imagine how many babies are going to end up here on ITSAN the hard way down the road because of this. :-( Ia there anything to be done?
Product details inquiry from Amazon customer Dave Bupp
From: Dave Bupp
Sent: Thursday, April 17, 2014 9:26 AM
To: Baby Pibu
I just saw that you are selling Baby Pibu Rash Relief with hydrocortisone on Amazon. Please, I beg you, read the review left by Amanda (not me) and educate yourself regarding Topical Steroid Withdrawal on International Topical Steroid Addiction network (itsan dot org) and see what thousands of people, including myself, are going through. To go through this nightmare myself is bad enough, but to see small children and babies suffer through this is heartbreaking. Topical Steroid Withdrawal, AKA Red Skin Syndrome or Steroid Induced Eczema, is a relatively new but very real and growing problem that is affecting thousands of people, including babies. You are literally marketing poison for babies.
Product details inquiry from Amazon customer Dave Bupp
From: Dave Bupp
Sent: Tuesday, April 29, 2014 8:53 AM
To: Baby Pibu
I wrote to you on April 17th and I have not heard a response. I realized, however, that I did not ask you a question. So, here's the question: Assuming you have seen the Amazon ratings and have educated yourself on topical steroid addiction/withdrawal, do you intend to continue to manufacture, promote, and sell products for babies that contain hydrocortisone steroids?
Return to Inbox Reply
RE: Product details inquiry from Amazon customer Dave Bupp
From: Baby Pibu
Sent: Wednesday, April 30, 2014 12:18 PM
To: Dave Bupp
Yes. Baby Pibu’s products are developed by a board certified dermatologist and reviewed by a panel of physicians who have extensive education and experience with topical corticosteroids and the potential side effects thereof. It is important to note that eczema is not curable, however symptoms can be treated and precautionary steps can be incorporated into skincare routines to help protect sensitive skin from severe flare ups. In order to safely and effectively treat mild to moderate eczema flare ups, Baby Pibu’s Rash Relief contains a very minimal dosage of a topical corticosteroid called hydrocortisone. Parents can be confident that it is completely safe for sensitive skin when used as directed. Clear instructions for use are noted on the FDA regulated label as well as advisement to consult a physician prior to use. For more information on rash relief, eczema and hydrocortisone please see the posts on the Baby Pibu blog.
RE: Product details inquiry from Amazon customer Dave Bupp
From: Dave Bupp
Sent: Thursday, May 8, 2014 1:56 PM
To: Baby Pibu
Please visit these blogs from TSW sufferers and/or their children:
Please reconsider products for babies with steroids.
RE: Product details inquiry from Amazon customer Dave Bupp
From: Baby Pibu
Sent: Sunday, May 11, 2014 2:30 PM
To: Dave Bupp
Baby Pibu sincerely empathizes with your skin condition and others belonging to ITSAN. We appreciate your introduction of ITSAN to us. Dr. Amy has personally treated patients such as you and understands what you are going through. Baby Pibu and Dr. Amy firmly do not advocate the chronic use of topical corticosteroids for treating eczema, mild to severe. Baby Pibu and Dr. Amy's mission is to educate new parents on common skin conditions and help them recognize, prevent/protect, and treat these common skin conditions safely at home. Dr. Amy has personally touched base with and talked with Dr. Rappaport in the past week. They had a nice discussion dermatologist to dermatologist involving the concerns of misuse of a product such as Rash Relief. Dr. Amy conveyed Baby Pibu's mission to Dr. Rappaport and appreciated the mission of ITSAN from Dr. Rappaport. Dr. Amy and Dr. Rappaport will continue discussions as needed. Appreciating the concern of possible misuse and abuse of Baby Pibu Rash Relief despite Baby Pibu's efforts to educate the consumer of how and when to use it, Baby Pibu has taken Rash Relief off the market at this time. Baby Pibu is in discussion with medical groups and will seek further medical advice on the eczema kit. The instruction card in the eczema kit has been found to be extremely useful in educating parents/consumers about eczema and the importance of daily care and protecting the skin. Preventing and treating eczema with non-steroid ointments such as Baby Pibu hydrating ointment are advocated as most important. The card also details corticosteroids and warns of the side effects of them as well. Consumers are instructed to consult with a physician prior to using on any child under the age of 2 yo and instructs to limit use to 2-3 days. Baby Pibu hopes you and ITSAN find victory in the end of individual sale of Rash Relief. Baby Pibu also hopes you will stop posting negative comments to its paying customers whom have no personal connection with Baby Pibu. Believe it or not, Baby Pibu has its followers who believe Baby Pibu and Dr. Amy is trying to do some good through skin care education.
[EDIT 5/14/13:30: Added the following response]
RE: Product details inquiry from Amazon customer Dave Bupp
From: Dave Bupp)
Sent: Monday, May 12, 2014 8:38 AM
To: Baby Pibu
Thank you for your concern and prompt action regarding removing Baby Pibu Rash Relief from the market, at least in its standalone version. The fact that Dr. Amy and Dr. Rapaport are having discussions is great news. I believe that Baby Pibu truly cares about its precious tiny customers and that your new and continued awareness of topical steroid withdrawal will have a positive impact on their future.
I want to clarify a couple things. First, please understand that although I am a proud member of ITSAN, I do not represent it in any other way. The action taken by me and other members on Amazon was of our own accord and should not be assumed to be representative of ITSAN.
Second, I stand by my reviews and comments on Amazon. Whether as a result of Baby Pibu employee’s direction or not, the barrage of 5-star reviews beginning on May 8 was a stunning example of opinion spamming. Although I will continue to respond to those reviews and comments as I see necessary, I will do so with the newly found respect that I have for Baby Pibu and its actions.
Finally, and I know this will come as no surprise, I will not be satisfied until topical Steroids are removed from all baby care products from any company, including Baby Pibu Rash Relief being part of the “Pibu’s Soothing Eczema Care Kit” and the “Baby Pibu Newborn Essentials Skincare Kit”. My assumption is that the standalone Rash Relief product was the easiest to remove from the market and that repurposing and repackaging of kits and gift sets may take some time.
I am hopeful that Baby Pibu’s awareness of topical steroid withdrawal and continued communication with experts such as Dr. Rapaport and “TSW Warriors” such as us on ITSAN will result in a new direction for Baby Pibu that will be of great benefit to your company and the future of babies suffering with eczema.
Thanks and kind regards from Texas,
Wednesday, April 30, 2014
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.
Wednesday, March 26, 2014
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.
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.
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!
Thursday, March 20, 2014
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.
Tuesday, March 11, 2014
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.
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.
Saturday, March 1, 2014
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.
Friday, February 21, 2014
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.
Wednesday, February 12, 2014
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.
Tuesday, February 11, 2014
-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 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.
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.
Friday, January 31, 2014
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.
Thursday, January 30, 2014
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.
Tuesday, January 28, 2014
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.
Saturday, January 18, 2014
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.
Thursday, January 9, 2014
The. God. Damned. Itching. Will it ever end?
What looks like good ol’ eczema has settled into my hands and bottoms of my feet.
I am taking probably too much hydroxyzine.
I’m still sleeping on the lounge chair.
I am gaining weight.
It seems as though the insane itching is moving south, hopefully that’s its exit path. What used to be insane itching on my stomach and chest has moved down to my legs, especially the calves and ankles. The itching on my stomach and chest has become, well, sane.
No more baths. One shower a day. I am experimenting with water temperature and duration. It seems the hotter the water the better it feels and I’ll shower until the hot water runs out.
The hair loss seems to have stopped. I hope the hair returns, but not a big deal . Heck, if I wouldn’t look like a bowling ball, I’d shave my head.
I am drier. I still get all wet and hot and cold, but to a lesser extent and not as often, and if I succumb to the itching and scratch it does not bring about the flood of wetness that it used to. I am leaving flakes all over the place again, but I’ll take dry flaky skin over wet oozy skin any day.
Most of the skin tags have gone away. A few have persisted and matured into adults. I tried the “tie a hair around it” thing on one and along with zapping it with a cauterizer it went away. The cauterizer hurts like hell, so the skin tag has to be pretty annoying before I will use it again. I’ve got a couple that are getting pretty annoying, as well as being a starting point for itching. Not sure why I have a cauterizer lying around, but I’ve had it for decades.
I am gaining weight. Not good since I am overweight anyway, but good in that it shows my metabolism is normalizing. I have been eating everything in sight and until the last month or so I was losing weight.
My mental attitude is better. It may be the hydroxyzine since it is an antihistamine that is also used for depression, but in any case, as my mom used to say, “I have soap in my hole”. She used to also say “Miss on you pister. You’re not so mucking fuch. Go in your own jack yard and back off!” Yeah, take that dermatologists!
I am still not convinced about this whole moisturizer withdrawal thing. In any case, I am moisturizing much less than I was.
I see a lot of talk about alternative medicine on the TSW blogs, and am struggling with whether or not to speak up. The trouble is most folks do not know the difference between homeopathic and naturopathic. I’ll leave it there for now except to say one of those is complete bullshit.