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Sara: Surviving Daughter of Scleroderma Patient

She had so many tests that they were beginning to wear her down.

Flowers for Sara by Sherrill Knagggs, ISN Artist This is the story of my mother who died on March 18, 1996, from complications of scleroderma. For several years before her actual diagnosis of scleroderma, she was suspected of having an enlarged heart. Next, was the numbness in her extremities which was occurring at the same time. She was told to carry on and that they would find out the cause. She was placed on heart medication and blood pressure medication. I do not think they really had an explanation for the numbness.

My mother had worked hard all her life with jobs that ranged from bartending at nights to housekeeping during the days at a local motel. When 1994 rolled around she was developing ulcers at the tips of her fingers, which happened in the winter. She thought that maybe she had frostbite. The ulcers would disappear, but only momentarily. They began to return more frequently. She began to notice her hands were not only cold all the time, but were sensitive to touch and cold.

My mother worked with her hands so for her to cut back on work hours was a real sacrifice for her. In 1995, she noticed her symptoms were beginning to include weight loss, fatigue, blood pressure changes, retention of water, and an overall change in who she was.

On December 23, 1995, she was advised to check into the hospital, but her favorite holiday, Christmas, was just around the corner and she was not going to miss that for the world. On December 26, 1995, she was admitted to the hospital in Minot, North Dakota. She had so many tests that they were beginning to wear her down. She had one last test that would leave her recovering in the Intensive Care Unit. When she awoke they had her diagnosis; scleroderma, which none of us had ever heard of before. We would soon find out the wrath it had planned for her. The doctor explained everything well for us, but the word that dumbfounded us was fatal.

She was only forty-five years old. How did this happen? Why her? Nobody could and has never been able to say anything else except that, "It was God's plan."

The last few months of my mother's life I was not really around her except during her next hospitalization, where I spent day and night with her like I did in Minot. This time we were in Bismarck. They ran more tests on her and before one procedure she told me to put on my headphones and give her my hand. I had my headphones turned as high as they would go and I felt her squeeze my hand and heard a scream like no other. Her blood vessels were beginning to collapse because of the blood thinner she was on, and they could not switch the intravenous (IV) to the other arm because of this. She was poked over twelve times with the needle and once I remember seeing the nurse move the needle around in her arm to find a vein.

It's the one on one time I spent alone with her that I remember most and the best. Because it was then, when the mother I thought that I had already lost due to her limitations,  I found that she was still there. A crazy, middle-aged woman and an unbelievable night owl. I found out how much like her I really was. After she was discharged from the hospital it was my aunts who were there for her and supporting her, while I was out literally raising hell. I always dwell on that because had I known that a month after her discharge she would be gone, I would have been with her all the time.

The night before she died I remember she was sleeping on the couch while I was watching television in the living room. Out of a sound sleep she sat straight up and said, "What in the hell are you watching?" I told her it was an Aaron Spelling soap and after that she went back to sleep. I was up late that night and when I walked by the living room I contemplated whether to either go lay by her or stay up with her. I did neither for the fear of her reminding me that I was up too late for a school night and I would catch hell if she knew. So I crept by her and looked in one more time and whispered, "Good night. I love you mom."

I woke up to my mom's sister knocking on my door frantically saying that there was something wrong with my mom. I ran into the living room and my mom was rolling around on the couch while my grandmother tried to console her. My aunt tried to get hold of a physician in town and he told us to wait for the Indian Health Service to open up. I suggested that we call another doctor whom he practiced with. The doctor said she would be ready and that we had to come by her house, which was two and a half blocks away, and she would follow us in her vehicle back to our house.

I remember walking back into our house and my grandma told us to be quiet because my mother was finally resting. They told me to take a quick shower and to pack a bag cause I was going to ride with her in the ambulance. I took no longer than four minutes to dress. When I returned to the living room I walked in just in time to hear, "I'm sorry there's nothing more we can do."

My mom began her new journey at 7 a.m. that Monday morning. I know she is still with me because since then only good things happen on Mondays. My oldest child was born on a Monday at 7:15 p.m., and my youngest was born on a Monday at 7:21 p.m.

To Contact the Author

Sara
New email address needed 08-06-09 SLE
Old Email Prefix: s_lindgren2001
Story posted 1-25-03

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
LINKS
Cardiac (Heart) Involvement
Digital (Finger) Ulcers
Scleroderma
Scleroderma Survivor Stories

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

Go to Sara P: CREST Scleroderma
 
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