Project Scleroderma | Rachel’s Story
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Rachel’s Story

Rachel Schultz is a 42-year-old wife and mother from Saratoga Springs, NY. She and her husband Jim have been married for 17 years and have a 22-year-old son and a 16-year-old daughter. Rachel is also the proud grandmother of a beautiful 2-year-old girl who she said, “I love to pieces.”

In June 2010, she was diagnosed with Raynaud’s Phenomenon, Limited Scleroderma and Sjogren’s syndrome. Raynaud’s Phenomenon is a disorder that affects blood vessels, most often in the fingers and toes. With Raynaud’s Phenomenon, the body’s reaction to cold or stress is stronger than normal. It causes blood vessels to narrow faster and tighter than normal. These episodes are often referred to as an “attack.” During an attack, the fingers and toes can change color, from white to blue to red. Due to the lack of blood flow, they can also feel cold or numb. As blood flow returns, fingers and toes can throb and tingle. Limited Scleroderma, sometimes referred to as “CREST Syndrome,” means that only limited areas of the skin have been thickened because of the disease. CREST stands for:

Calcinosis – calcium deposits under the skin and in tissues

Raynaud’s Phenomenon

Esophageal dysmotility – causes heartburn

Sclerodactyly – refers to thick skin on fingers

Telangiectasias – enlarged blood vessels that appear as red spots on the face and other areas

Sjogren’s (SHOW-grins) syndrome is a disorder of your immune system identified by its two most common symptoms — dry eyes and dry mouth. The mucous membranes and moisture-secreting glands of the eyes and mouth are usually affected first — resulting in decreased production of tears and saliva.

Rachel had always been very active and full of energy. Her nickname was “the Energizer Bunny.” Not only was she working, she was also in an online program to obtain her RN degree. But, all of that quickly changed as her symptoms began to present.

“I went from working three jobs and taking care of everything – my house, the bills, the children, our pets – and still having energy, to wanting to do absolutely nothing but sleep. I could not function. I felt as though I would wake up in the morning and had been run over by a freight train every night while I slept. My body ached all over, as if I had the flu, only it didn’t stop, no matter what I tried. My house literally fell apart. I couldn’t work, as I just couldn’t get myself out of bed in the mornings anymore. I went from being a highly functioning individual to someone not even recognizable.”

Like many Scleroderma patients, Rachel has battled not only the debilitating physical effects of this disease, but has also endured the stressful toll this disease can take on patients and their families. Because she had not yet been given any formal diagnosis, Rachel’s inability to function as a normal healthy person began to cause her marriage and family to suffer. To make matters worse, Rachel and her husband had to place their home on a short sale after it was broken into and their things were destroyed. Rachel said that this “about destroyed my marriage and our family.”

Of the specific changes in her health that led to her eventual diagnosis, Rachel said, “My initial symptoms were severe Raynaud’s attacks, horrible acid reflux, and tight hard skin with patches of dark and light skin. I was first referred to a dermatologist, who witnessed my Raynaud’s attack in his office, and was then referred to the rheumatologist I now see, who suspected right away that it was scleroderma.”

Although the family had an uphill battle from this point, her diagnosis seems to have actually played a critical role in helping them to rebuild. “Once I was finally diagnosed,” said Rachel, “my husband was able to overcome his resentful feelings towards me. Before my diagnosis, when I was unable to function and not work, he believed I was being lazy, that nothing was wrong with me, that I just didn’t want to work. He, like myself, had NO idea that I was in fact sick – very sick – and, that it was just the beginning of a full-time battle for my health. After being diagnosed, I offered him every option of dissolving our marriage. He did not want that at all. He and I had many things to discuss and plan for – we still do. Scleroderma is everything but predictable. But, we continue to work together and communicate with each other better, to continue to grow and stay together. I was also approved for my Social Security disability, which has helped us financially as well. We are still continuing to rebuild.” Going forward, Rachel said, “I would say my motto would be ‘there is a reason for everything.’ We may not ever understand why, but have to trust that there is a reason we face the things we do. I think remaining positive and moving forward is key to inner strength and peace of mind. I am grateful for everything I have or don’t have. As long as my family stays together and we work together, stay strong and remain focused on what is important, we will have a better future. We should not be afraid of change or taking chances, but embrace them. Always try to fix things before giving up or throwing them away.”

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1.Types of Scleroderma. (n.d.). Retrieved from http://www.hopkinsscleroderma.org/scleroderma/types-scleroderma/

2.What Is Raynaud’s Phenomenon? Fast Facts: An Easy-to-Read Series of Publications for the Public. (2014, November 1). Retrieved from http://www.niams.nih.gov/Health_Info/Raynauds_Phenomenon/raynauds_ff.asp

3.Sjogren’s syndrome. (n.d.). Retrieved from http://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/basics/definition/con-20020275

Christy
rachel@missmerkledesign.com
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