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Writing Through Scleroderma

Lori Carey lives in Middletown, NY, and is the mother of two children. She began to notice symptoms in 2005 and was diagnosed with scleroderma in 2008. Lori recently accepted the role of co-support group leader in our Orange County support group. She was kind enough to answer a few of our questions, which we've published here along with two of her journal entries and one of her poems.

lori carey from tri-state
Lori, center, with fellow support group members Juanita, left, and “Wil”, right.

Scleroderma Exchange: When did you start writing, and why?

Lori Carey: I first started writing when I became ill. They didn’t know what was wrong with me. I had a lot of pent up frustration over not knowing what was happening or why it was happening. Being able to express my thoughts and feelings in my writing provides a never-ending source of comfort for me.

SE: For you, what’s the most difficult aspect of living with scleroderma?

LC: I miss my life – my life as I knew it – the type of life that I will never know again.  Although it was fast paced, stressful, exciting, and at times consuming, it was “my life and scleroderma took it away!”  Although there were good times and bad times, they were my times, spent with people I love and cherish, and they provided me with memories that I’ll never forget. The people you work with become your extended family, and I miss that.

SE: What do you wish more people knew about living with scleroderma?

LC: I think people should realize that living with Scleroderma is no different than having a commonly known disease.  We encounter the same life-altering events. But unfortunately our disease does not receive the same attention.  I’d like the public to understand that although we may not look sick, we are sick. Some of us you can tell, others not.  Please don’t assume that when you see me out and think I look good, that I must feel good, because looks can be, and are, deceiving – especially in my case.

Some of Lori’s journal entries:

(* Note: these dates are almost 5 months after I had to stop working and 11 months after the death of my BFF.  – Lori Carey)

November 16, 2010
It’s now about 1:30AM and the demon that possesses my body has awakened me in pain. I thought of just taking more medicine and falling back to sleep but all I feel like doing is crying myself to sleep. Oh this pain when will you leave me alone!!!!!! I HATE THIS. Is this what Aunt Judy felt????? Oh how I wish she were here. Maybe we could then find some answers as to why we both got this??? The pain is horrific this a.m. Why does this have to happen to me???

It’s now 4:20AM only got 3 hrs more of sleep. Pain in foot and ulcers woke me up. Pain killers bothered my stomach, my legs feel like lead, have a hard time lifting them up just to get into the car. If only J.D. were around to help me through this, he had such a different and positive way of talking to me. I miss him still very much.

November 27, 2010
It’s early, about 4:30 AM. Had to get up because I couldn’t stand the pain anymore. I think sometimes they see my pain and despair – like cousin John did the other day, but then he dropped out of site, busy I guess with his own life … when I needed him in mine.

Yes, people, you’re right when you say, “What could I do?” A simple talk sitting around friends would be nice. But we all know once you get sick people want nothing to do with you. Oh I wish I could cry out in pain it hurts so much! Scleroderma sucks!!!

December 4, 2010
While sitting I was rubbing my neck and felt indentations in the back. When I pulled skin back I felt something change in my throat. Having trouble breathing but will not say anything because I don’t want to hear it. No compassion, no talking to me about it. No do = no this = no that. I’m 48 years old and have this terrible disease. Why doesn’t god help me????? I hate this existence and would like some happiness and joy.

“A Dream This is Not”
by Lori Carey

As this disease attempts to overtake
My mind, body, and soul,
I intend to fight everything it sends my way.

Although I may not have the same
strength or endurance as others,
what I do have cannot be measured.

For it is a light inside me, fed from a source up above,
from the one that will be waiting for me
at the gates with opened arms,  “Welcome home.”

My love,
I’ve missed you, your smile
and those captivating blue eyes –



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