Finding Balance in Dis-ease

Dear Friends,

In the past four weeks, you may have noticed that I have virtually disappeared from the social media world.  This is because I had a very sudden onset of skin eruptions.  On Wednesday, May 3rd, 2017, I was diagnosed with an autoimmune blistering disease; my immune system is attacking healthy skin cells.

As you can imagine, there are all types of day-to-day life decisions I now have to make, and new ways of functioning to consider and implement.  Why?  Because unfortunately, since skin is the largest organ of our bodies, it’s difficult to conceal all of the expressions of this condition especially in summer attire.  I have to wear long sleeves and long flowing skirts/full pants in order for my clothing not to irritate my skin.

I have to pad my desk edges, the seat edge of my office chair with soft material so that the regular everyday banging, rubbing, and friction our skin is used to dealing with, does not irritate and break out my new, more fragile skin, blisters.

I stopped counting the large blisters (aka: bullas) after the first eight big ones.  These 8 all formed within the 1st 2 weeks of this condition’s onset.  This included the biggest, a lightbulb-sized one on the side of my left arm at the tail-end of week 1.)

I have been to the dermatologist’s office, and the ER more times in the last month than I have been in the last 15 years.

This blistering disease is rare and most GP and ER doctors have only heard about it via textbooks, or a seminar, or two, while in med school.  Thus, making it difficult for them to help me deal with the day-to-day issues of the condition.  The main problem is the intense itch; it drives me to distraction.  In the last several weeks, I have figured out that movement greatly helps alleviate the desire to itch.  So, I move around a lot while working!

The medication prescribed will take 4 – 6 weeks to take effect.  So, in the interim, I’m still experiencing the effects of the blistering condition.

Please know that this condition is in no way contagious!  It’s not even genetic.  It is a condition that sometimes has no specific cause, or trigger.

Here’s more information if you wish to read about it: https://rarediseases.org/rare-diseases/autoimmune-blistering-diseases/.

There are three pictures posted below.  But, my friends, it’s not a pretty-looking thing especially when the bollas burst and they begin to draw, pull and crust over.  It’s especially not fun when more bollas form around the original site of the initial bollas!  The two pictures are of my right arm on May 12th, 2017.  The one on the left is at 12:12 am EDT.  The one on the right is at 7:39 am EDT.  The picture beneath them is what my arm looks like today — a week later.

In the days and weeks to come, I will be venturing back into the fray as my energies get stronger (and as the medicine kicks in!).  But, until that time, I will post infrequently.

righ arm jewels today_5 18 2017

Today, 5/18/17 – one week later

Okay, it’s time for me to wrap up.  I suppose there should be wise words.  Some epiphany, or enlightenment.  Not sure I’m there yet.  Give me a few more weeks.

However, know that I am at peace.  I am as comfortable as is currently possible.  And, that each day, I know my body is healing and is finding its way back to balance.

Here’s to wishing you all a Happy Friday and a blessed weekend.

 

 

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8 thoughts on “Finding Balance in Dis-ease

  1. I’m so sorry this is happening to you and I’m sending you strength and healing energy. I have no experience with this at all but want to put in my two cents as far as possible causes. I think that many of these mysterious auto-immune diseases are caused by environmental factors or reactions to chemical ingredients in products we use. I’d like to suggest that you stop using regular soaps, creams and detergents and switch to as natural and organic products as you can obtain. Get an air purifier. I suggest using straight coconut, grapeseed or jojoba or olive oil as a moisturizer for body and face. Put it on the scars after your eruptions scar over to reduce permanent scars Use seventh generation or other chemical free detergents, Dr. Bronner’s soaps for shower and shampoo and see if your condition improves. Much love and good luck.

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    • Thank you, Vivian. I am deeply touched. Thank you also for the great suggestions. I am using organic extra virgin olive oil on my skin as a moisturizer on the areas without any active breakouts. Using Aveeno nurishing coconut body wash. But, I will try something more natural. I was looking into some natural home-made facial soaps and body lotions. “The Herbal Book” by Jeanne Rose (1976) is what I started with and Jeanne has a lot of great recipes! Have you ever tried making your own?

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