Chronic Illness doesn't have a LOOK

I was diagnosed with Systemic Scleroderma in 2001.  Over the years I’ve adapted to a lifestyle and mentality where I know I am stronger than this.  When I tell people, I have Scleroderma the first reaction I get is, “what’s that?” and the second is 

“you don’t look sick.”

 

From Mayo Clinic website:

There are many different types of scleroderma. In some people, scleroderma affects only the skin. But in many people, scleroderma also harms structures beyond the skin, such as blood vessels, internal organs and the digestive tract (systemic scleroderma). Signs and symptoms vary, depending on which type of scleroderma you have.

 

I have Limited cutaneous systemic scleroderma aka C.R.E.S.T. Syndrome, my goodness right?  There is no cure and I have been living with this for over 20 years.  My daily symptoms include Calcinosis.  Calcinosis makes it very difficult for me to do fine motor skills.  I also try to avoid tasks that involve possible injury to my fingertips.  Any type of blunt force that happens to my finger creates a finger ulcer (digital ischemia).  The injury creates a small pocket of puss that develops under the skin accompanied by painful pulsations resonating from fingertip to elbow.  This is the beginning of necroses in my finger.  I also have Raynaud’s Syndrome where my hands and feet do not get enough blood flow to the tips of my digitals.  Have you seen my hands?  They’re not pretty, that’s two decades of finger ulcers you’re looking at.  I’ve heard so many comments about my hands that I’m at the point where it doesn’t bother me AS MUCH as it used to.   I underwent digital sympathectomy in both hands.  The surgeon told me that this will work but eventually the tissue will build up again and if I wanted to I can undergo the procedure again.  It worked for two years and now I get the finger ulcers regularly. 

My fingers are the only visible symptoms of how Scleroderma kicks my ass.  The other symptoms are internally.  I also live with Esophageal Dysfunction; long story short I had an esophageal manometry test done (I wish this on no one) and found out the muscles in my esophagus do not squeeze and push my food down.  But Rose you’re such a voracious eater? Thank you I am, I am also proud to tell you that while you’re eating with me I’ve learned to chew my food a billion times so it liquefies down my throat and I strategically have a beverage nearby so by the means of gravity my food goes down into my stomach.  Ta-da!  That’s not all folks, on top of the muscles deteriorating my esophagus I have G.E.R.D.  Stomach acid rises up and in my case the acid travels to my lungs.

Since my esophagus lacks motility, I’ve leveled up to Interstitial Lung Disease more specifically Bronchiectasis and Asthma!  My lungs look like I’ve had pneumonia for many years, but I’ve never had that, not even walking pneumonia.  When I look at CT scans of my lungs my strength is usually gone and I’m in tears. I’m lucky that I’m not at the point where I need an oxygen machine, but my Pulmonologist has had the lung transplant talk with me.  I have yearly Pulmonary Function tests and my average peak flow level is 300.  I take inhalers regularly.  I honestly have forgotten my inhalers at times, but I’ve learned to use meditation and it works.  I strongly support meditation and mental strength for people with chronic illness. 

 

This is getting long, Sclerodactyly goes back to my amazing finger problems. The last letter in the C.R.E.S.T. acronym is Telangiectasia.  Telangiectasia is a symptom that I do not experience yet.  Along with Scleroderma, I have year-round environmental and food allergies, migraines, and postherpetic neuralgia from having Shingles TWICE.  Those symptoms are like the cherries on top of my coffee ice cream mixed with Oreos and brownies sundae. 

 

Speaking of food a few years ago, I was in line at Chipotle and this guy noticed my Scleroderma Awareness ribbon and pin.  I shared this long ass story with him as we waited for our burrito bowls to be assembled.  By the time, I reached the cashier he told me he paid for my food and thanked me for educating him on Scleroderma.  Now after reading my story I encourage you to buy me food or gift cards to Thai, Korean, Mexican or Italian restaurants, and why not Cold Stone Creamery?  I can provide you with my address just DM me.  I honestly want to thank you for taking time out of your life to hear a snippet of my journey. 

It's been awhile since I've been on this blog and if you continue reading; I'm still in love with my best friend Terry and we have an eight year old daughter and a nine year old Olde English Bulldogge.  That ten year journey to parenthood I will share another time.