Tuesday, February 8, 2022 - An Update and a Video

What a crazy couple of years this has been!  Apologies for not keeping this blog up to date, but every time I have attempted, I have failed.  I could go on and on, and maybe I will, about the turmoil this country has been in, the pandemic, my wife’s IBM, how my faith in humanity has been shaken to the core, how politics and religion have altered my relationships with friends and family, etc., but hey, this is a TSW blog!

Even though I thought I was completely healed, that has not been the case.  I have been through a couple relatively minor flares since the last post, and I have been struggling to determine whether they will ever go away.  Perhaps they are not really flares, but rather me just dealing with contact dermatitis, especially since the only symptoms have been skin related.  Anyway, I will post more about it, but I really wanted to get a link posted ASAP about a newly released short documentary called “Skin on Fire”.  The director is a friend of Dr. Marvin Rapaport, a personal hero of mine, and I think it is excellent.  It’s only 30 minutes long, and if you are reading this I think it would be well worth your time:

 

https://youtu.be/GuaBbsL1qKA

Thursday, April 2, 2020 - Dave's Magic Manuka Balm

Due to public demand, I have decided to publish the recipe for my highly regarded Dave’s Magic Manuka Balm.

I have tried a plethora of balms, ointments, moisturizers, and oils, and after experimenting with homemade versions, the following concoction is, humbly, the best I have ever used. It is inexpensive, has no preservatives, absorbs into the skin nicely, and clears up any patches of dry contact dermatitis that I still get on occasion. 

Ingredients:

1/2 cup Safflower Oil
1/3 cup Shea Butter
1/4 cup Beeswax
1 tablespoon Manuka Honey

Directions: 

Melt everything except honey in double boiler. I use a glass bowl that fits on top of a saucepan filled with enough water to touch most of the bowl. When everything is melted, remove glass bowl, dump the hot water and replace with ice and water, then place bowl back on top. This will cool down the melted ingredients quickly. Use a handheld mixer to whip the ingredients as they cool, pausing occasionally to scrape the sides of solidified mixture back in. When mixture is almost solidified, add the honey and continue to whip and scrape the sides. When mixture is completely whipped into a frenzy, scrape it into your final container. Immediately place it in the freezer for about 15 minutes. Then just store at room temperature in a handy place. The results is a fairly thick balm with, well, not an unpleasant odor. Naive, yet not innocent.

If you'd rather have something that smells nice, you can add a drop or two of essential oil, such as lavender, but keep in mind that essential oils are very complex and not as safe as those that sell it would like you to believe. Some, including lavender and tea tree oil are estrogenic. I completely avoid them.

The freezer part is to cool the mixture quickly. If not done, the honey in the balm will tend to crystalize, which is fine as it melts on your skin, but it is much nicer if it’s all smooth and buttery. 

NOTES:

Manuka honey has quite the reputation, but there is no conclusive evidence that it is effective at anything better than regular honey. Also, the odds of buying actual Manuka honey, even of the label says it is, is about 10%. The majority is counterfeit. I trust Costco. Honestly, the balm is probably just as effective with regular honey, but since I saw Manuka honey at Costco I grabbed it. Other oils would probably work fine too, but I am partial to safflower as it has actually been clinically tested on babies.

It is my opinion that many people that have allergies struggle with using moisturizers because virtually all commercial products contain preservatives. Many of those preservatives, and other ingredients used as well, are known allergens. The majority of shampoos, for example, contain methylchloroisothiazolinone and chloroisothiazolinone, a combination also known as MCI, that is a preservative used in industrial lubricants that works by breaking down cell walls. Nasty stuff. It is now my philosophy to not use anything on my skin that I would not eat. I actually tasted this balm, and, well, it tasted awful. I do not recommend spreading it on toast.

Links to products I used:

Safflower: Just whatever is at grocery store.
Shea butter: https://www.amazon.com/gp/product/B01J29G72O/
Manuka honey: https://www.costco.com/comvita-umf-10%2b-manuka-honey%2c-17…
Beeswax: https://www.amazon.com/gp/product/B01LYMZK4V/

Wednesday, January 8, 2020 - I Blend in with the Crowd

Almost exactly six years ago, while writing about my mom and her dementia, I wrote on this blog "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."

My mom passed away about 4 months after that post.  Today, I embrace my normalcy just as sweetly as I hoped, and I embrace the memory of my mom even more.  

UPDATE:  I am having trouble with Blogger when responding to comments!  The following is a response to Unknowns comment to this post:

Hi Unknown!  This is Dave, but for some reason if I try to reply it won't work.  Thanks so much for stopping by and commenting!  I have a lot to say about NMT, but the short version is I think it is BS.  Here's a discussion about 6 years ago, including a discussion with Dan, the big proponent back then of MW, or "moisturizer withdrawal".  He has since taken back his claim and says that MW does not speed healing.

https://davestsw.blogspot.com/2014/01/january-28-trip-to-doc.html#comment-form

Tuesday, July 9, 2019 – 6 Year Anniversary!

This might be it! This was the first year since starting TSW on July 9, 2013, that I have not had my usual summer flare. I feel fantastic, at least as far as TSW goes. I still have an occasional itchy spot, but since I am allergic to a whole bunch of stuff, that is to be expected and will certainly be lifelong. I have heard that TSW healing takes about 10 to 20 percent of the time that topical steroids were used. If so, I consider myself lucky since I used them for over 50 years, essentially my entire life, and about 10 percent of that time has passed since starting TSW.

It has been a while since I last posted, so here’s a summary of what has happened since then.

I retired last February. It was sooner than I should have financially, but I want to be able to travel with Robin as much as possible while she is still mobile. The first thing we did was to make a road trip to Florida, and we had a great time. We made it all the way to Key West. We have other road trips planned and the next will be to drive to Seattle to visit friends and family. Hopefully we will make it down the west coast to see my daughter that works at Disneyland before heading home.

I was hoping Robin would go, but she just didn’t feel up to the long flight, so I went alone to Mooloolaba, Queensland, Australia for the first time to visit my daughter that lives there with her husband. The trip was amazing. It was so great to see her and her husband’s family, and I fell in love with Australia. It is beautiful. On the way down and the way back I was able to visit her twin in California. We tore up Disneyland! I am really hoping that we make it there on our west coast road trip, not only for Robin to see Disneyland, but for us to visit relatives that are scattered about the west coast.

Speaking of Robin, her IBM is thankfully progressing very slowly. Lately it has seemed to affect her stamina more than strength, and she tires easily. We moved last year to a single-story home and it is much easier for her to navigate. We also live much closer to her daughter and three grandkids, and we enjoy spending time with them. Robin is still very active with the NICU Angel Gown program. We are going to see Peter Frampton this fall, as he has announced that he also has IBM and is doing a farewell tour since he knows he will not be able to play the guitar well much longer.

I got a request from another TSW warrior in Argentina, Santiago Aufranc, to use my graph on his Spanish blog he is working on. I said yes of course, and it will be fun to see it used in new places. Pic of the Spanish version below.

Finally, this blog has become more personal than just about TSW, but that is a good thing, at least for me. Now that I am retired, I intend to spend more time doing this and other social media. I have a lot to say about TSW, especially regarding alternative medicines and alternative methods, such as the Aron Regime.

If you are reading this and are going through TSW, I send virtual hugs and promises that you will get through this and emerge a better person than you were before!

Thursday, December 13, 2018 - 100%

This post is a difficult one.  On one hand, I am completely healed.  My other hand is madly knocking on wood.  I have literally zero symptoms of TSW.  My skin is the best it has ever been.  It could be my imagination, but I feel like my skin has "toughened up" and got thicker, especially on my hands.  If I were to do some project before, such as woodworking, my hands would pay a price, and typically crack or at least break out.  Now: nothing.


I still have allergies, and with the exception of some crazy temporary allergies during the bad parts of TSW, they are not caused by TSW so they will remain with me.  I will still need to avoid known allergens, such as propylene glycol, preservatives, and Poof Ball, our Persian cat, as I can still get contact dermatitis.


I am having tendonitis issues in my arms, and that may be a lasting side-effect of life-long topical steroid use, I don't know, but it may just be because I am almost 64 after all.


The hard part about this post is that my selfish joy is tempered by Robin's battle with muscular dystrophy.  We found out Robin has MD a few years ago, but it took a long time for the docs to give her a final diagnosis.  It turns out it is a rare form of MD called IBM, for "Inclusion Body Myositis", an incurable degenerative muscle disease that is affecting her legs, arms, hands, and ability to swallow.  We have been feeling the disease is progressing extremely slowly, as she can still walk fine without assistance and is still able to volunteer full time for the NICU Angel Gown Program.  Also, our new single story home has been great for her, as she has increasing difficulty with stairs.  The issue we are most dealing with at this time is her stamina.  After what you and I would consider normal activity, she gets very tired very quickly.  Robin has been incredibly strong about this whole experience, with a stoic attitude of simply playing the hand she's been dealt the best she can, but damn, this aspect of IBM has hit her hard.  She will probably get mad at me for making this post, but one reason I am is that I feel that those that know and love Robin personally need to be aware of her limitations, as she would never be the one to tell anyone about it, and certainly the very last to complain.


I intend to continue this blog, perhaps with a shift in focus from me to Robin.  This blog was started simply as a personal diary so I can look back at what was, but I have been told that it has been a help to others going through the TSW ordeal.  Perhaps it can be a help to those with IBM as well.  In any case, it can continue to be not just my diary, but our diary about a strong and beautiful woman tackling a life changing challenge with wisdom, beauty, grace, and dignity.


With that in mind, I have made a (hopefully) final version of my infamous graph that shows (mostly symbolically) what I went through.  I am not kidding myself here, as I fully expect to go through at least another flare, but based on how minor the last flare was, I fully believe that TSW will no longer have a significant impact on my life.

Tuesday, September 11, 2018 - Feeling Great!

First, always remember those that lost their lives 17 years ago today.  Our lives have never been the same and what was intended to tear us apart has made us stronger.


Secondly, I feel so good!  I am back to pre-flare condition, which means I am at 99% healed.  Honestly, I will probably never make it to 100%, and I'm okay with that.  There's some persistent rash and itching primarily on my right hand, likely due to contact dermatitis.  My next step is to start doing the UVB light box again in hopes that will take things the rest of the way.


Not only was this flare the shortest yet by far, this is the first time a flare has not affected my feet.  They were happy campers the whole time.  Actually, I was a happy camper the whole time as it was also the first flare that did not affect my everyday activity.  My daughters visited from LA and Australia and we had a great time!  Yay!


Normalcy will never be normal to me again.

Sunday, June 10, 2018 - Yep, Another Flare

I'm approaching my 5 year anniversary and I've been hanging on to feeling good and enjoying it every day but I have had a nagging feeling that another flare was going to happen.  Maybe because of the heat, I dunno, but every year right about now it has happened, and it is happening again.  Damn it.


It's a little different this time in that it came on quickly.  In just a couple days the hands got significantly worse, the neck broke out, the creepy crawly feelings are back, and I am having trouble sleeping.  Nothing terrible yet, so I am hoping that it will be mild and short lived.


I was really hoping to take Robin to Disneyland this August and I am still making plans, TSW be damned.  My daughter is a photographer at Disneyland and the last time I was there was about 6 years ago with her and her twin sister.  Robin has never been to a Disney anything, and I am hoping she will love it as much as I have virtually my entire life.  It will be especially sweet because my other twin daughter will be visiting from Australia.


While there, I am tempted to make an appointment with Dr. Rapaport, the Beverly Hills dermatologist who pioneered Topical Steroid Withdrawal, just to give him a hug.  It was his work at UCLA that shed light on Red Skin Syndrome and made millions aware of the dangers of topical steroids.  He co-founded ITSAN, the organization that helped me so much through the bad times.  Dr. Rapaport and ITSAN have unfortunately parted ways, but I still love them both.