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Nan: Mixed Connective Tissue Disease and Fibromyalgia

I became aggressive after about the fifth diagnosis of fibromyalgia and demanded medical treatment.

Berry Tree by Shelley Ensz I have always been an active person, raising four children alone after a fifteen-year marriage dissolved. I prided myself on being listed as the seventh woman in the state of Ohio to become a cement finisher apprentice with the Local 886 out of Toledo, Ohio. With a love of horses since childhood, I gave riding lessons in Western, English, and Huntseat. During these early years, I began to draw again and designed a line of greeting cards called Use Caution Concepts.

I resigned from the cement finishing program when my health and children's issues began to creep in. We moved to a smaller community south of Toledo in early 1992.

Not long after having my fourth child, I began to experience symptoms similar to those of multiple sclerosis (MS). I spent many years in and out of different medical centers trying to find out the cause. I was told many times to talk with a psychiatrist. I always agreed, yet the psychiatrists kept sending me back to the medical doctors. I had developed different types of skin growths that the local pathology group could not diagnose after a week of study.

I had been raised with a father who was a radiologist. Thank goodness for his keen insight and wisdom. He knew there was something going on, so he never let me give up. Raised around medical professionals, I had a different approach to doctors than most.

I became aggressive after about the fifth diagnosis of fibromyalgia and demanded medical treatment.

One other odd thing with this mixed connective tissue disease (MCTD) is that I had a strange growth removed by my primary doctor at Ohio State University (OSU). It showed positive for only connective tissue! I have had blood tests often come back showing high titers, an electro protein immunoglobulinemia spike, and a mild-to-moderate-range Epstein-Barr.

Finally, after several years of struggle, one wonderful doctor at OSU got gutsy and gave me the MCTD diagnosis. This past summer I had some female surgery, and the chart read, "Blunt force and sharp force needed to remove." My gynecologist said, "It was the MCTD that made removal difficult." There are new diagnoses now on my basic medical forms.

I have applied for disability in Ohio and have been denied several times. I cannot work; the drug labels alone advise that one should not drive. I am very limited in what I can do. One day may be good but then the next three are bad.

I need my gallbladder out, but I have postponed that because my blood pressure has to get stabilized first. I just underwent a cardio stress test and am relieved to know my heart is okay at this time.

I want to thank you for letting me share part of my story. I have some suggestions for those who are not only saddled with chronic illness, but may also have problems finding proper caregivers.

1. Be aggressive.

2. Find at least two primary doctors who will work together for you.

3. Build a team of doctors who will understand the complexity of your illness.

4. Keep a list of all necessary telephone numbers well within reach and on your person. I also suggest giving the list to each doctor.

5. Build a file. Each time there is a new or different test, get the results, and give copies to each doctor, and keep a copy for yourself, too!

6. Each doctor needs your prescription list.

7. Get all your prescriptions from the same pharmacy.

8. Build a relationship with at least one of the people who fill your prescriptions.

9. Make sure you wear a medical bracelet if your doctors feel it necessary.

10. File for disability if your doctor says you are disabled. Do it fast! The process of applying and review can take years. Who knows where you will be by then.

11. Continue to love and enjoy your family and friends. They are going through this with you.

Bright blessings to you all!

To Contact the Author

Nan
New email address needed 09-26-06 SLE
Old Email Prefix: ladymaat8
Story posted 2-22-02
Story edited VH1: JTD 9-9-03

Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
LINKS
Difficult Diagnosis
Fibromyalgia
Mixed Connective Tissue Disease (MCTD)
Multiple Sclerosis (MS)
Voices of Scleroderma Volume 1

This Story is Featured in Voices of Scleroderma Volume 1

Voices of Scleroderma Volume 1 The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!

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!

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In Loving Memory

Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
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