(English) by First Name: A B C D E F G H I J K L M N O P Q R S T U V-Z

By Language: French   German   Greek   Italian   Polish   Romanian   Russian   Spanish   Turkish

Julie H: Sjogren's Syndrome, Polymyalgia Rheumatica, and Peripheral Neuropathy

Despite all of the above health issues, I try to keep a positive attitude.

Hi! My name is Julie and I am forty-nine years old.

In late 200, I started having problems in my right neck area. It began with a lump the size of a golf ball, then gradually became larger until it was the size of a softball. I went to my physician who then sent me to the ENT specialist.

The lump was quite painful and I was taking up to thirteen Tylenol a day. My ENT specialist told me I could either have surgery or live with it. I chose to live with pain, but as time went on, it became much worse. I finally told my ENT that I would undergo the surgery.

On June 29, 2002 my left submandibular gland was removed. A Baylor pathologist sent the report back and it showed I was in stage 4 of Sjogren's Syndrome. I learned there were many different opportunities for those in Stages 1-3, but Stage 4 there was very little to be done except take multiple drugs and get worse.

With my Sjogren's Syndrome I am very fatigued, have no tears in my eyes, I cannot produce saliva, sometimes forget simple words. Sometimes I cannot communicate my thoughts because I forget major words. I am in pain all of the time, have trouble sleeping, and if I do not take a muscle relaxer every night, I will not be able to turn my head the next day.

In 2003, I began having debilitating migraines. In the beginning I had over thirty per month. I was sent to my neurologist who placed me on several daily medications and then a medication for the actual migraine. Sometimes these are so bad that I cannot do anything but remain under my covers curled up in a ball. The medications have increased in dosage and seem to be helping!

Today in 2007, I have about eleven migraines per month. I have not had an extremely horrible migraine since January 2007.

In 2004, I learned I had growths on both of my ovaries that kept growing larger and larger. I then had to have a complete hysterectomy to remove all of the growths. There were four!

Also in 2004, I was diagnosed with polymyalgia rheumatica and was placed on more medication. This causes pain in my shoulders, hips and knees. Sometimes I cannot bend my knees nor can I walk well. This causes throbbing pain in my hips and shoulders. Without medication, I would not be able to walk at all.

In 2005, I had to have surgery on my right shoulder because of excruciating pain. I was diagnosed with frozen shoulder.

In 2006 I was diagnosed with peripheral neuropathy. Both my arms and legs feel like they are on fire underneath my skin. Sometimes my hands and feet go numb. My feet turn purple/blue as well. (I do not have Raynaud's Syndrome). It also feels like I am wearing long gloves, knee high socks and a tight hood around my head. Of course I am not wearing any of these things! I also started falling, not while I was doing anything in particular. I could just be standing and then fall. The falling has pretty much stopped, but I still have all of the other symptoms. I cannot take any medication for this because there is only one out there and I am allergic to it.

Three weeks ago I had to have surgery on my left shoulder due to excruciating pain. The doctor took out the arthritis, some shoulder bone and then manipulated my shoulder. I am still in pain and the physical therapy is killing me. I do all of my exercises at home, but I guess it will take some time to heal.

I work full time - four days on, three days off. I work weekends and evenings. I am the supervisor of a team of investigators that work in conjunction with the local police, FBI, DEA, hospital personnel and several other agencies. Therefore I must be on my toes at all times.

Despite all of the above health issues, I try to keep a positive attitude. I know depression can come easily if I let it, therefore I try not to allow a foothold to creep in.

I truly believe that each person can be the change they wish to see in the world! As a result I work hard in notifying and educating doctors and the public about these illnesses. The more people know, the more money and time may be spent on research.

Who knows there may be a cure just around the corner! One person can make a difference - BE that difference!

To Contact the Author

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill 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

Judith 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!

SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.