Author Topic: Sjogren's Article on Debora  (Read 4178 times)

Pooh

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Sjogren's Article on Debora
« on: May 14, 2008, 03:00:38 PM »
Debora e-mailed me and ask that I post her article.  It's a very nice write up and I think all of you will like the positive natural of it. 

Pooh



Diagnosis comes seven years, six doctors later


By REBECCA HOWES
The Union Democrat


 Imagine being told by health professionals that your symptoms are all in your mind.
 Debbie Shoemaker of Sonora didn’t have to imagine it. She lived it.
 “One doctor, who I no longer see, told me that my symptoms were a sign of getting older,” Shoemaker, 48, said. “He told me to, ‘suck it up and get used to it.’ ”
 Called everything from lazy to crazy by peers and some medical professionals, Shoemaker, on one of her numerous trips to the doctor, was once told by a physician’s aide that her symptoms, swollen joints, muscle aches and a rash on her hands and feet, were most likely syphilis.
 “I was humiliated,” Shoemaker said. “I told them they could do the test. There was no way I had it.”
 The test  for the sexually transmitted disease came back negative.
 It would take seven years and six doctors to properly diagnose Shoemaker.
 The severe joint pain, chronic fatigue, dry mouth, dry eyes and brain fog she experienced actually had a name — Sjogren’s syndrome.
 Pronounced “show-grins,” Sjogren’s syndrome is an autoimmune disease in which white blood cells attack moisture-producing glands. The most common symptoms are dry eyes and dry mouth.
 “She was an answer to my prayers,” Shoemaker said of Dr. Yasmeen Khalid, the rheumatologist in private practice in Madera who diagnosed her on her first visit three years ago.
   “You could tell by looking in her eyes and her mouth that she had Sjogren’s,” Khalid said. “I’ve seen a lot of cases. It is very common.”
   Sjogren’s, which strikes as many as 4 million Americans, can also cause dryness of other organs, including the kidneys, gastrointestinal tract, blood vessels, lung, liver, pancreas and the central nervous system.
   The average age for onset of the disease is the late 40s, and Sjogren’s is more prevalent in women than men.
   “We don’t know why it affects more women. It could be hormonal. We just don’t know,” Khalid said.
   Fifty percent of the time, the syndrome occurs alone, while the other half of the time it occurs in the presence of another connective-tissue disease, such as rheumatoid arthritis, systematic lupus, systematic sclerosis
or polymyositis-dermatomyositis. Shoemaker was
diagnosed with rheumatoid arthritis in her early 30s.
 Regardless whether Sjogren’s strikes alone or in the presence of another disease, it’s systemic, which means it affects the entire body.
 In Shoemaker’s case, Sjogren’s has amplified her rheumatoid arthritis symptoms and has significantly affected her quality of life.
 Becoming pregnant at 39, Shoemaker, who was undiagnosed at the time, refers to her 9-year-old daughter, Breanna, a fourth-grader at Curtis Creek Elementary School, as her “miracle baby.”   
 Breanna weighed less than 4 pounds at birth as a result of Shoemaker’s body’s inability to produce sufficient amniotic fluid in the womb.
 “She actually lost weight the last two months I carried her. She wasn’t getting enough nutrients,” she said. “It was a miracle she survived.”
 Before her disease progressed, mother and daughter would go camping, fishing and hiking for days at a time.
 “I’m angry because I can’t be the mom I used to be — the mom I want to be,” she said. “When I get tired, I’m done.”
 If she overexerts herself, she can be out of commission for three days to a week, if not longer.
 “My being sick scares her,” she said of Breanna. “I explain to her that Sjogren’s isn’t going to kill me. It’s something you live with, not die from.”
 The disease may not kill her, but it has taken away her freedom.
 Unable to work for the past four years, she relies on disability benefits to pay the bills.
 A self-described people person, Shoemaker used to work the front desk at the Fallon Hotel in Columbia and misses the interaction she had with co-workers and guests, she said.
 “I loved to work,” Shoemaker said. “I miss being productive and being around people.”
  She never knows when a flare-up might happen, so being away from home, even for a day, isn’t an option.
 Keeping her own teeth, it would turn out, was not an option either.
 Shoemaker developed dental caries, which cause decay and cavities in teeth, as a result of the disease, because there wasn’t any saliva to protect her mouth, Khalid explained.
 Spending thousands of dollars on fillings and crowns, only to have them come out less than a year later, Shoemaker gave up her 10-year battle to save her teeth and got dentures last year.
 There was something else Shoemaker couldn’t save — her marriage.
 “I went from being Susie Homemaker — to my house being a disaster,” she said.
 Barely able to get out of bed because of chronic pain and joint inflammation, it took all of Shoemaker’s energy to get her daughter up and ready for school.
 The seven-year marriage began to dissolve under the pressure of Shoemaker’s illness, and eventually she and her husband, Kelly, separated. Their divorce became final last year.
 “We are both mourning the loss of our relationship,” Shoemaker said.
 She and Kelly are on good terms and try to spend time together with their daughter, she said.
 Shoemaker is now on a prescription regimen that includes three pills a day and a weekly injection in her leg but can include as many as eight medications, depending on her symptoms.
 She could let anger and sadness consume her because of the disease, but that isn’t Shoemaker’s style.
 Her faith in God runs deep and allows her to look at her situation in a positive light, she said.
 “I have to look at the things I can still do. I want to enjoy life,” she said. “God is going to get all of us through this.”
 

  Contact Rebecca Howes at 588-4531 or rhowes@ uniondemocrat.com

lynnmarie219

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Re: Sjogren's Article on Debora
« Reply #1 on: May 14, 2008, 04:36:45 PM »
Great article!!!

Thanks Debora for helping get the word out!!


Thanks for posting this here for us Pooh! 

Patze

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Re: Sjogren's Article on Debora
« Reply #2 on: May 14, 2008, 05:36:37 PM »
All right Debora!!!!  Wahoo!!  Good article! ;D :D ;D

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Cheryl

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Re: Sjogren's Article on Debora
« Reply #3 on: May 14, 2008, 06:19:38 PM »
Debora,
   You were brave and unselfish to expose yourself this way.   By doing so, you also educated readers about the disease, and we thank you!
Cheryl
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ccfbarb

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Re: Sjogren's Article on Debora
« Reply #4 on: May 14, 2008, 06:26:21 PM »
Debora....Great Article!  It expresses how so many of us feel...undiagnosed, symptoms ignored and discounted.  Thanks for getting the word out!

Debora

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Re: Sjogren's Article on Debora
« Reply #5 on: May 15, 2008, 01:58:37 PM »
Thanks everyone for your replies.  It did take guts to talk about the dx of syphalis, but then I thought that doctors need to realize their bedside manner (and ignorance) is awful!

It will be interesting to see if anyone sends letters to the editors.  I just hope I've helped people who are going thru the same thing!

Take Care
Debora

eyeamdry

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Re: Sjogren's Article on Debora
« Reply #6 on: May 15, 2008, 02:15:58 PM »
Debora, your time and thoughtful interview will go a long way to helping others who may have Sjogrens or Sjogren-like symptoms and their doctors have "no idea."   The general public are also educated through articles like this and make it a bit easier on those of us who get this weird disease!  Lucy

Khalyal

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Re: Sjogren's Article on Debora
« Reply #7 on: May 17, 2008, 10:35:01 AM »
Debora, thanks so much for sharing ...it seems like it's normal for people with this disease to go for years without an accurate diagnosis!

Khaly

nisha

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Re: Sjogren's Article on Debora
« Reply #8 on: May 17, 2008, 02:23:04 PM »
Terrific article, Debora.  Well thought out and covers so much of what we go through.  I'm sorry about your marriage - it is hard for a relationship to survive chronic illness.  Seems it either makes it stronger or destroys it.

nisha

YICKelly

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Re: Sjogren's Article on Debora
« Reply #9 on: May 17, 2008, 04:54:05 PM »
Way to GO Debora!!!  Good read and sure to open a few people's eyes.  Let's hope more than a few.

Debora

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Re: Sjogren's Article on Debora
« Reply #10 on: May 18, 2008, 05:12:01 PM »
Hi Everyone

I had a very good response today at church.  Alot of people told me they read the article and said it was an excellent!  After they would mention the article they would say "But you don't look sick", and then they would say "I bet you hear that alot"!  They all said it was very interesting and full of information.  No one had heard of it and now are aware of it! 

Take Care
Debora