Over 2,200+ pages in 22 languages!
 
Patient & Caregiver Stories Main Menu
(English) Stories 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
All Stories by Date Posted: 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008
Stories by Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms
Stories 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.

Apricot Hibiscus by Sherrill Knaggs, ISN Artist 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
Julie
Email: jlhnnh@yahoo.com
Story edited 09-20-07 JTD
Story posted 10-17-07 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Thompson Devlin
LINKS
Sjogren's Syndrome
Sjogren's Stories
Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Sclero Forums
Symptoms of Scleroderma
Types of Scleroderma
What is Scleroderma?
ISN Artist: Sherrill Knaggs (In Loving Memory)
Sherrill Knaggs 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 Rose ThompsonJudith 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 !
New Personal Stories
Alana: Scleroderma (Peru) I cannot open my mouth completely, I have lost strength in my hands, I have breathing problems, my face looks different, my skin is really tight and I have lost my appetite...
(Español/Spanish) Alana: Paciente Nuevo con Esclerodermia (Peru) Le dije que ya no podía abrir la boca completamente, he perdido la fuerza de las manos, tengo problemas respiratorios, mi rosto está diferente, mi piel está dura y he perdido casi el apetito...
Kristy C: Generalized Morphea The only place where I do not have any morphea is my face, which I am very thankful for...
(Update) Raymond: Surviving Son of Scleroderma Patient On October 19th, the Herbert family lost another member of the family to scleroderma. My uncle Edmond has passed on...
Sharon H: Scleroderma/Morphea It has been thirty-two years living with this and it has progressively gotten much worse and has spread...
Teena: En Coup De Sabre My mother and I went to Johns Hopkins Hospital. They did what was called 'Grand Rounds' where about fifty doctors were looking at me taking pictures and videotaping me...
More New Stories: November 2008
Submit Your Patient, Caregiver or Survivor Story in:
Arabic  | Dutch  | English  | Español  | Deutsche (German)
Italiano  | Polski  | Russian  | Spanish  | Turkish  | Other Languages
We will edit your story, create original artwork to decorate it, prepare it for the web, and post it on this site. Just fill out our simple Story Submission Form for your story, updates, or email address changes.
Keep on Surfing!
Go to {nextpage}
Contact ISN. We are a full-service nonprofit agency.
Email: isn@sclero.org or
Post in Sclero Forums!
International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702
USA
Toll Free Hotline in U.S.
1-800-564-7099
Direct Line
1-952-831-3091 (U.S.)
(We are also known as the Scleroderma from A to Z web site.)
© Copyright 1998-2008 International Scleroderma Network
All Rights Reserved