Patient Stories

Julie’s Story

Julie's Story

My journey begins in October 1967, the year I was born. I was a child of two college students who wanted nothing but the best for me. Their love for me allowed me to be put up for adoption. Twenty-eight days later, I had a permanent home.

My life with CIDP began in December of 1995, at the age of 28. I was living in San Antonio Texas and flew home for Thanksgiving. As I was walking through the airport when my dad (a Dr. of Pediatric Radiology) noticed that my gait was off. I attributed it to being a “post pregnancy” thing. I did tell my dad that my hips were sore. He advised me to go see my primary doctor and get a referral to go see an orthopedic doctor. My doctor ran some tests and asked me to stand on my toes. I could not do that. I used to dance through college age. I did not realize I had lost functioning. I left the Dr.’s office with my referral. The next day I got a call saying that I had a 1:00 appointment with a neurologist. At this point, I remember that I was in a panic. I had hip pain and was going to an orthopedic doctor, not a neurologist.

I arrived at the neurologist office to find out that my blood test for muscle inflammation came back elevated. The neurologist wanted to conduct tests of his own. I began to refer to these tests as the “push me, pull me” tests. I had EMG’s done, a spinal tap, and a muscle biopsy done. The Dr. had narrowed his search to Multiple Sclerosis, Muscular Atrophy, Multiple Myeloma, or Chronic Guillain- Barre. After Christmas of 1995, we got the results of all the testing. I had the Chronic Guillain- Barre Syndrome. The Dr. said to look at the bright side, the Chronic GBS is treatable. Yeah, easy for him to say; he was not the one dealing with the devastating news.

After the initial diagnosis, I was very depressed, angry, scared, and mad. Why me? That is what we all have said at one point or another. Lucky? No way! I had my pity party. I was scared. I cried and I screamed. I am a young mother with two children, what am I going to do? At that point, my husband and I “took the bull by the horns” and we began our research.

Julie's Story

Treatment also began. I was sent to another doctor. I saw a hematologist/oncologist. I began my marathon rounds of plasma pheresis. I went every day for 28 days in a row. I remember being so cold when the plasma was being removed. The tool for measuring the effectiveness was me. How did I feel? It was at this point that I began to learn to listen to my body, and began to work on being in touch with how I was feeling. I also began massive amounts of steroids. It was recommended that I eliminate all of the stress, so I stopped working full time as a special education teacher.

In my research of investigating, I was able to locate the GBS Foundation. I gathered information about this disease. I got in contact with Dr. Richard J. Barohn, who was on the medical board, and made a visit to Dallas, where he was practicing. Dr. Barohn was a great doctor. He confirmed and agreed that the Chronic GBS was what I was dealing with. The second opinion from a doctor familiar with the disease helped me come to terms with the situation.

I continued on my journey as a patient who has a rare disorder. The next several years were spent battling this monster. I had flare ups that would cause me to go backwards. Each time I recovered, I never made it back to where I once was. I soon found out that this monster would flare its temper and would strike back the next time with more vengeance. This would be my life. I soon adapted to this pattern, slowly losing functioning in my arms and legs. I still stayed in touch with the Foundation. I looked forward to seeing the newest updates in treatments and progress. I made copies of the Foundation letters and took them to my doctor’s offices. I became the expert of my disease. I became the educator of those around me.

Nine years into this disease, now named CIDP (Chronic Inflammatory Demyelinating Polyneuropathy), I faced a bigger battle. In October 2004, my husband, Phillip, was diagnosed with Pancreatic Cancer. How lucky we are…We sat together in the Hematology Oncology office, dripping together. I was getting IVIG and my husband chemo drugs. I knew my disease would not kill me, but as I sat by cancer patients and my husband, I knew they were not as lucky as I was.

I became the care provider for my dying husband, my 15 year old daughter and 10 year old son. In August of 2005, 10 months after the initial diagnosis, my husband lost his battle with cancer and died.

Dealing with a tremendous amount of stress, I continued to push on. At this point in my life, I began to get worse. I developed drop foot in both feet. The functioning in my hands deteriorated. I began to use ankle foot orthotics on both feet. As an adult, my choices were limited for “age appropriate” looking AFO’s. I began to embrace the face that I looked different. I chose to make the best of the situation and I began buying crazy knee socks. I switched neurologists and began my infusions there. Along this journey, I met another individual who had this disease. We became drip buddies. We made it a point to have a “girls day” on infusions days. We would order lunch for delivery. We brought chick flicks and made popcorn. Instead of being depressing, we made it a fun day.

Children are great. Their innocence is wonderful. They will ask, “What is wrong?” After answering questions and dealing with insensitivity I began to say to people, “I have been blessed with a Chronic Inflamatory Disease that affects 1.5 in a million.” I soon discovered that this was the best phrase for people. They either ask for more information, or they are speechless and don’t say anything else.

In April of 2012, I had a major setback. I slipped in my house and severely broke my left ankle. I needed to have surgery. I am now the proud owner of an L shaped plate and about 9 screws. I experienced life in a wheelchair and did not like the experience. My drive became to be as mobile as I possibly could.

The Foundation helped me feel like I was not alone on this journey that I had been experiencing. Over the years, I had read about the symposium in Fort Worth, Texas. This symposium was a life changing experience for me. I felt like I was with family. Everyone understood. They got it. I realized at the symposium that many people were unaware of the daily living aids that were available. I began a new mission: to help others with my disease discover modification and tools that exists to help with daily functioning. I left the symposium with such a drive that I knew I needed to be a liaison so that I could help others.

I have learned to advocate for myself and want to help others advocate for themselves. In March of 2013, I tried a new device for drop foot. It is a neuroelectric stimulation system. I passed the screening and this electronic system would work for me. I soon found out that the system was not covered by insurance. I knew that this system would keep me active and help me keep my leg muscles functioning. I began searching for an alternative funding. $8,000 a leg was way out of my budget. I discovered DARS (the Department of Assistive Rehabilitation Services). I met with a caseworker and 10 months later I was fully funded for bi-lateral Bioness.

Today I work full time as a special education teacher, completing 19 years of teaching. I have maintained my health and I still have IVIG infusions every 2 weeks. I hope to continue to help others on their journey. If you look at where I have been and then the things I have endured, my life is truly a blessing!