2016 Year of the Patient: Julie Chubb
Julie Chubb - Part 1
My name is Julie Chubb and I was born in Burlington, Iowa. I am 46 years old and I am 4’7” inches tall. I was born on November 14, 1969 and my parents are James A. Chubb and Jackie A. Chubb. I also have one brother, Jerry A. Chubb who is very supportive of my health situation. Growing up, I was always sick with different elements like colds, flu, mumps (chicken pox). I have had several surgeries growing up like: fluid on both wrists, tubes in my right ear, my tonsils out, parotid gland taken out, myelogram on my back (allergic to the dye), 4 back surgeries, right knee replaced and surgery for a broken femur. I have been in the hospital several times at the University of Iowa Hospital, Burlington Medical Center and Great River Medical Center. When I started school, I was teased about being short and I was held back in third grade because of my absences a lot. I was so ashamed of being held back that I was very distraught. I was withdrawn and would not talk to anyone.
I realize now, looking back that being held back was a good for me academically. It made me stronger mentally and emotionally. In 1996, I was diagnosed with Systematic Lupus and Fibromyalgia….
During each summer of Middle School, I had four back surgeries at the University of Iowa Hospital. On the first surgery, I had a Harington Rod put in and eleven vertebra were fused and I was in a full body cast and went to school with my sciatic nerve pinching and causing pain. The second surgery was the next summer. I was in traction for two weeks to stretch my pelvis and I had to wear a Plaster Body Spica Cast and could not stand for three months. At twelve years old, I was taken to a local nursing home in Burlington. I heard people yelling and I knew I had to get out of the nursing home. I asked my mom to come home and it caused a few issues with my parents. At home, I had a hospital bed and a reclining wheel chair. I had to lay flat to go to the bathroom and to eat. My mom went back to work and a very wonderful neighbor and my neighbor’s daughter took care of me. I eventually got my right plaster cast leg taken off and I went back to school with my full body plaster cast and my left leg. The fourth surgery was the next summer because I had a stress fracture and then I had a plaster body cast. The only good thing about having so many back surgeries is because it got me out of gym class from sixth grade through High School. During the High School years, I had a virus and I ended up at the University of Iowa Hospital in ICU with a bad virus my freshman year. Yes, I was sick sometimes but, I didn’t think anything of it. I graduated in 1989 from Burlington High School.
My life turned upside down after graduation. My parents got divorced and my brother got into a car accident where a pipe impaled through him and he survived. I started college at Southeastern Community College in West Burlington, Iowa. I was tired all the time and at night my hands and arms would be numb. I really didn't think to much of it.
I graduated in 1992 with my Associate Degree. I started college at Iowa Wesleyan College in Mount Pleasant, Iowa. I stayed at the dorm but I preferred to go home on weekends. I was always tired but preferred to be by myself or with my roommate. I had the best roommate in the world and she was very supportive. I wanted to be an elementary teacher but had setbacks and decided teaching was not for me. I always tired, sick and just couldn't handle the stress with the kids. I did get my Bachelors degree in Elementary Educational on. I tried to get a job and I sent a lot of resumes but settled with working in a day care center. I felt tired, knees hurt and always sick.
I went to the University of Iowa Hospital and Clinics to see Dr. Volgelesang. Dr. Vogelgesang had me do blood tests, urine tests and an examination. Dr. Volgelesang noticed my lupus rash on my face and gave me a 2 creams. I was given a shampoo to help my hair. For the pain on my joints and I was given Predisone 10mg and 200mg of Plaquenil. My tests came back with a positive ANA, white blood cell count was low and my kidney and thyroid tests were not normal. Dr. Vogelgesang said that I had Fibromyalgia and a Connective Tissue Disease - SLE Lupus.
I was given a medical shampoo, medication for rash, Predisone, Plaquenil, Folic Acid, Paxil and Amitriptyline. After I started getting better, I tried to get a job but it took awhile. I applied for Disability and found a part time job. I started working with the mentally disabled in the home and community. My bosses work with me to be successful at my job. The work is very rewarding but can be frustrating at times even though I love my job.
Since I work in mental health, I understood taking to a professional could help me. I decided to get some counselling to discuss my feelings. During this time I fractured both of my knees and ankles but I still went to work. I had to wear white, plastic boots on both ankles and was told that I had vascular necrosis and osteoporosis. I was told from from a local doctor that I may eventually be in a wheelchair. I finally got off of Predisone after five years and I was put on Methotrexate - 15 mg. I had a knee replacement on my right knee and then I broke my femur.
My doctor said that my SLE Lupus is quiet and the Fibromyalgia is acting up. My osteoporosis is still an issue after my latest Dex scan and I continue to do blood work every month. I continue to go to work and do what I can to stay happy and healthy.
As of March 2, 2016, I am currently taking 150mg of Hydroxychloroquine and 17mg of Methotrexate for the SLE Lupus on Fridays. I use a CPAC at night for sleep apnea. I experience brain fog which is annoying. I continue to use a cane when I walk for stability and I use my handicapped sticker when needed. I am currently involved in my church. I pray and sing in the choir, usher and attend Book Club when I can but, several years ago, I had to give up teaching Vacation Bible School and Sunday school because of my knees and ankles. Due to deformed fingers, I have a hard time writing, picking things up off the floor and I can't pick up trays of food. I volunteer in different organizations like: Burlington Business Women's Organization, Partner's for People with Disabilities (we provide activities for people with disabilities, Handicapped Boy Scouts (assistants at meetings and special events) and on the Auxiliary Board for a local Mental Health Provider in town. I also, do two fundraisers a month for Lupus Walk and Partner's for Persons with Disabilities at my favorite restaurant, Sarduccis. I enjoy volunteering because I may get to a point where I may have to quit my job someday.
I still work 15 hours a week with two Consumer Choice Option clients who hired me to work with them. I also have seven clients that I write budgets for the Consumer Choice Option. My clients have the ability to keep me from feeling sorry for myself and to encourage me to keep fighting this disease. A good day for me is getting up every morning, going to work with minimal pain and lots of relaxation. A bad day for me is being tired, having stress, lots of pain and having people looking at you saying that you are not sick. I do have a relative that yells at me because I am sick. She hates that I take naps, don't get up early and always calls me lazy when I want to relax. For relaxation, I go to my happy place and imagine the good things that make me happy. I also go to water exercise twice a week go to land exercise for relaxation with my client.
I don't know what is in store for me but, I have to trust God and all my doctor's that they will help me be physically, mentally and emotionally. As for today and tomorrow I will pray to God that I can walk, work, go to meetings and live life to the fullest. By having positive friends and family, I have been about to travel, do new things like go to Chicago and keep me feeling sorry for myself.. My dad was diagnosed with Chronic Lymphatic Leukemia Cancer and no medicine or chemotherapy worked. He knows that he is going to die and is handling it beautifully. Right now, my dad is my hero and I hope that when I get called home from God that I handle it like my dad. I hope that someday, the researchers find a cure and find new drugs not just for me but to everyone in the world as well as our future people in the world. I hope this helps someone in the world who reads this because you are not alone.