About Me

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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Wednesday, April 4, 2012

..the good, the bad and the ugly (skin!)...

My mom and I on the crazy trip to visit my daughter: we were NOT in Florence!

Skin problems are often seen in people suffering from CFIDS or CFS/ME.  And because of the various symptoms/conditions we pick up along the way as a result of our wacky immune systems, at times our skin can develop rather major problems.

Out of nowhere around 1998, I suddenly developed huge hives over my entire body. My feeling? Crud.  I'd already had pityriasis rosea, a childhood affliction which I managed to develop as an adult.  I also got a nasty case of shingles after my children came down with chicken pox, all three right in a row.  

The funny thing about the shingles episode was that it is rarely seen (at least back in the 80's) in young adults but is seen mostly in the senior population whose immune systems are compromised.  This should indeed have been a bit of proof to the doctors whom I kept telling that there was definitely wrong with me. (Please imagine an eye roll here. Thank you!)

Another point I found interesting is that in order to have shingles, you need to have had chicken pox first, something I never had as a child.  Doctors have told me that I must have had a sub-clinical case, one where I had chicken pox but never actually came down with the bumps and markings.  I still have a hard time believing this is the case because my mom and I have examined each and every possible medical event in my life and there simply never was a time that I had the virus in the form of chicken pox.  Surely I would have run a fever at some point, at the very least.  But really, as a kid I was as healthy as an astronaut prepared for space travel.  No ear aches, barely a cold, though I did have the occasional sore throat and, of course, headaches.

Furthermore, our systems are so messed up that it wouldn't surprise me if I'd never had it and simply went into it, bypassing the root virus.  I mean, who REALLY understands these things?

So, here I was, stuck in 1998 with these huge hives which made me into an itching machine. Some of the hives were plate-sized and in some areas the hives had hives.  Honestly, I looked as if I belonged in some sort of freak show. Worse, my daughter had moved to Florence because NYU had suddenly been gifted a breathtakingly gorgeous Villa by a generous benefactor and was spending a semester there. Lucky girl.

I love to travel and I was sorely missing my daughter.  I know you can guess what's coming next... but you might also be surprised.

Amazingly enough, time-wise, I had just spent an entire year going to a holistic clinic in Columbus, Ohio, every week for an entire day or two or even three at times, of intensive treatments for my core problem, CFIDS/Fibromyalgia and the off-shoot problems.  More on this part of my "journey" at another time, however.

Because I felt relatively healthy, I thought I could handle a week of seeing my daughter, and the trip wouldn't be too much of a financial burden since I had the frequent flyer miles to make the airfare a nice zero dollars.

But (and really and truly, there always is a "but") I broke out in hives a couple of months before I'd even imagined this trip to Florence. Pitiful. I did NOT want to go the steroids route and resisted it for weeks as I itched, scratched and was totally miserable from this wicked state of affairs.  My weight was at a comfortable place and I really didn't want to become an eating machine with the off switch broken yet again.

When the idea of visiting my daughter in Florence came up, however, suddenly the steroid option started to sound good. And after a course of steroids, my hives disappeared for a while. Just as I was about to leave, however, the hives came back and I needed a steroid shot again. To give a quick summary of the hives aspect of this story, I'll simply say that those hives did return and continued to do so for quite some time until we finally found an anti-histamine that I've now been taking for years as a prophylactic measure.  As soon as I forget to take those little pills, the hives would come back.

My point?  All too often, skin issues are a very real, often severe, and an always annoying issue for "us." Thankfully, I have developed a huge array of options now which don't include steroids (knock on wood!), which often help me avoid drastic measures. Saturday and the following days after my beauty adventure was one such example.

Once hubby and I walked into the "beauty heaven" on Saturday and could collect our thoughts before starting the whole rigmarole, ever observant hubby asked me what the heck had happened to my neck and decolletage, the fancy word for the delicate skin on the chest area. I had huge, and I mean HUGE, blotches on my neck and chest, and I'd used nothing but my regular Dove when I showered.  A couple of areas had what looked like scratched bumps which were open. I suppose it was simply too much for my system to wash as well as go out - too hard for my system to endure.

This had happened in the past, just a bit.  I remember being embarrassed once while at an appointment with a cardiologist - a five-minute trip from our front door.  But Saturday's redness was way beyond what I'd seen in my "normal" past episodes.

To make things worse, the further along we went on with the day, more redness kept appearing, seemingly growing as if it were being fertilized.  At one point ever-observant hubby said it looked like he had tried to strangle me...and done a messy job of it at that.  Angry, red, though thankfully no welts, it looked almost as if someone had poured acid on it.  I must admit I wasn't too concerned and explained that this happened practically every time I went out, ever so patiently - as well as condescendingly - to my nosy hubby.

Got home and WOW!  What a shocker to see the mess in my own (larger) mirror and to realize that it had progressed during our ride home.  OK.  I admit we did stop at TJ Maxx, a compromise because I really wanted to go to a good Pittsburgh mall, and hubby was outraged. And I admit that I have that tendency to really want to run if I can do so at all. But in this case I had never been to the "new" TJ Maxx, despite the fact that the new strip mall was not so new anymore and I thought it was a good time to remedy that situation.  Plus I wanted the observation I made to a friend of mine when I burst out in frustration one day, "I don't do malls, I do CONTINENTS!" to no longer be true.  So I did have my reasons for going....

Back to the nasty red thing.  It was also now starting to hurt and my fingers wanted to scratch it, touch it like your tongue touches a sore tooth.

I looked over my supplies and saw "The Green Balm" among my (newest) goodies, ordered from "Cult Beauty" in England. I bought it because it WAS from "Cult Beauty," after all - a new discovery for me.  They really do carry only cult items, not full lines of any brand, but the items "everyone," professionals and the peons like me, are wild about.  Each product they carry is there because it really works.  What a fantastic idea!  This balm (I'd ordered an assortment because of a free international shipping promotion combined with a discount, courtesy of Ruth, the model, whose blog I love to follow) looked promising.  No "bad" stuff in the balm at all. All so very green and gentle that you can even dilute it in water and gargle with it, according to one source, though somehow I don't think I'll be trying that too soon.  

I gingerly patted a bit on my neck and decolletage and it felt heavenly.  A couple of hours later I noticed the area had really calmed down.  Hubby was duly impressed.  By the next morning, it started to look like I had simply had a bit of too much sun, skin turning almost into a tan.  I knew that with luck I would not be getting the bumps or discoloration which these sorts of rashes can cause, not even the tiny scabs that can occur.

The red angry rash, or whatever the heck it was, was practically gone - well, in some lights. The places I touched as I reapplied The Green Balm turned redder again, not happy about being touched but within ten seconds the area was back to the barely visible redness before touching.  My skin was also sooo soft.  

So this is the story of MY adventures with skin problems with this DD.  I have more I'd like to touch on in further posts. I'm trying out another product that looks promising in the oils area as well as those BB creams I mentioned last month.  

I do hope that this has helped some of you (possible) readers out there, at least to know that you're not alone.  It's a crazy illness which no one really understands.  

I also hope that there may have been seeds of thought cast out there for you to consider.  If and when you happen to run into these skin problems, my adventures may shed some light as to how you choose to treat them.  

And if nothing else, I hope you've had a few chuckles to make your day that much more happy/bearable.  I really do believe in the power of humor and laughter, right there after the prayers and positive thoughts we send out and receive.


  1. I wonder what Moa Green Balm has that calms the skin. When Tasi had chicken pox I would wrap her in oatmeal sort of "kashitsa" concoction and her skin would calm down, and itching stops for some time.
    I am following with great interest your writings. I find some good advices. Also, it makes me think how much struggle you have to put to overcome EVERYTHING that was thrown on your way...

  2. Warm wax between fingertips before use. Apply liberally to dry, burned or scarred areas as often as necessary for instant relief and moisturising action. Avoid the eye area.
    Active ingredients: English Yarrow, Tea Tree Oil.
    Full ingredients: Coconut Oil, Sweet Almond Oil, Soybean Oil, Beeswax, Yarrow, Water, Tea Tree Leaf Oil.
    I hope I've not broken any copyright laws. This is from the "Cult Beauty" site.
    I absolutely love yarrow in healing products. It's as classic as podorozhnik is for Russians/Ukies, though now with fields gone, it's not out there everywhere. And I now fear using podorozhnik because everyone puts pesticides on it to get rid of it...it is a weed, after all.

    Chicken pox ad oatmeal seem to go together in all cultures!

  3. And thanks Mariula for the feedback. It's very kind of you.

  4. Hey Irene,

    I found this post very interesting regarding your skin. I recently met someone who has an illness with similar symptoms to ME, but has bad histimine skin problems. Her condition is very rare. NOt many doctors know about it, so it often goes undiagnosed. I think you should look into it a bit. It's called: 'Indolent systemic mastocytosis'. It's linked to skin, gut , chronic fatigue, pain, hypotension, etc. They test it by doing a skin plug or measure the trypas?(levels in blood)

    This just popped into my head as soon as you started explaining... You never know.

    1. Treya, thank you so much for the lead! I just started googling "indolent systemic mastocytosis" and it certainly looks like something that should be followed up. Wow! How amazing would it be if we found a big part of the problem??? I will definitely talk to my doctors about reviewing the symptoms, old records if need be, and seeing if testing should be done. I am so grateful to you that you thought of this and wrote in. I will definitey let you know what happens. Again, thank you so much!

      Hope you are having good days!