It seems that my mother, through most of her adult life, was always very sensitive to touch, talking of this discomfort and that illness and, in my opinion, she went to the doctor too frequently. I thought she should go to the psychiatrist and the psychologist. I assumed that she was a hypochondriac as did my father. She went to the rheumatologist, the cardiologist, the internist, the general practitioner, the chiropractor and the dermatologist. Fortunately, she had great health insurance with the state of California through her job as a word processing technician for the Department of Health and Welfare.
She telephoned me in Alaska and told me of her prognosis and mentioned something about having five years. As her disease progressed, I left my happy home and job in Alaska and came to California to assist her.
I really did not understand what scleroderma was. I just know that she took a lot of pills and went to a lot of doctors. She tried to explain the CREST syndrome to me, but it was hard for me to comprehend the disease's symptoms. Mom said that it was the same thing that her oldest sister died from.
I am a visual person, show me. So she did the show and tell thing with the Raynaud's and whatever else presented itself. I remembered seeing my Aunt Julia's hands with Raynaud's and seeing her husband carry her handbag. She also had very thick ankles which I know now was caused from edema. I could tell that Mother's breathing was labored and that she huffed and puffed upon exertion. The interstitial fibrosis in her lungs eventually required her to be on oxygen all the time.
She was a beautiful woman with thick lips. They thinned and her mouth furrowed. That reminded me of my aunt, as well. What I could not see, I chalked up to hypochondria, not knowing that mother's heart was failing until her legs, torso and face began to fill with fluid to the point where she had to be hospitalized and drained more than once. She complained of difficulty swallowing food although she had a good appetite until the very end. She had a finger ulcer which lasted for months and finally she collected a souvenir to show me, a little hard rock she called calcinosis that came out of the finger wound. She developed an ulcer on her ankle that would not heal which required surgical procedures.
The doctor finally put her on some medication for depression and anxiety. During this time, while cleaning her home, I did run across a publication that she had received from a support organization, which helped me to understand a little better.
She stated that she thought a new chapter should be added to the Bible along with The Book of Job, titled the "Book of Verna". She had so many infirmities. After struggling for so long to maintain her independence she finally required several hospitalizations and finally residency in a skilled nursing facility. One afternoon she called me at home to tell me what the doctor had said to her that day about her kidneys. The way she put it was, "The doctor says my kidneys are not doing too well and it will be curtains for me if they do not work."
Another day she called to ask me to take her to the hospital. I told her she was in a hospital but she explained that the convalescent hospital was not where she wanted to die. She fought courageously for life to the very end of it. Her faith and her determination to survive to see her twin great-grand daughters grow up gave her courage to cope and hope through this long drawn out process of dying of a rare disease that her family and friends did not understand.
None of her family was with her at her appointed time. She seemingly had cried wolf too many times, and who is ever prepared to deal with the death of a loved one, anyway? While in the same hospital in which she had given birth to me forty-nine years prior, she died in September 1997, in the company of Princess Diana and Mother Theresa. The cause of death was respiratory failure due to congestive heart failure due to scleroderma.
At our last parting I recall the weather was becoming stormy and it was looking like it would rain. Mom was concerned that I was going to be out in it as I had ridden my bicycle to the hospital to be with her. The ride home required me to drive over a busy bridge. She said, "Now you be careful riding that bicycle!" I marveled at her ability to be concerned with my welfare as she lay dying.
She struggled valiantly to survive the disease and she told me that dying was the hardest thing she ever had to do. I am happy that she is no longer suffering. I know she would be as pleased and encouraged as I am to see all the new research happening and to know that there is hope on the horizon.
Now (in the year 2003) and in the future better treatment will be available and I pray that a cure will be found one day. At this time there are many support groups and web sites with so much educational information. Inspiration and camaraderie is available. I am grateful to all the scleroderma organizations and doctors for the groundwork and advancements made to date. It is wonderful!
New email address needed 08-01-06 S LE
Old Email Prefix: catsgrandma
Story submitted 5-12-03
Story posted 6-30-03
ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
Carpal Tunnel Syndrome
Causes of Scleroderma
Congestive Heart Failure
Depression and Anxiety
Difficulty Swallowing (Dysphagia)
Hope on the Horizon
Mouth Furrowed (Microstomia)
Progressive Systemic Sclerosis
Scleroderma Survivor's Stories
Reading Voices of Scleroderma Books: Diana Kramer.
Sharing Scleroderma Awareness Bracelets: Deb Martin, Brenda Miller, Vickie Risner.
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