Toni’s Juvenile Rheumatoid Arthritis story
Nancy’s Rheumatoid Arthritis story
Kathleen’s Rheumatoid Arthritis story
Richard’s Rheumatoid Arthritis story
This is the Juvenile Arthritis onset story of Toni, in her own words.
My name is Toni. I live in Edmonton, Alberta, and I was diagnosed with juvenile rheumatoid arthritis at the age of 5. I used to be a happy, beautiful, healthy little girl. So full of life. I loved to sing and dance, run around, and play on the school playground with my friends.
I was in grade 1 when my symptoms started to show. My parents didn’t believe me, thought it was an act so I wouldn’t have to go to school. My left knee would not straighten or bend, and it hurt a lot to even step on it. So they left it, and the next day it switched to the other knee. And then back again. I would lie in bed for hours crying in pain, not knowing what I did. And my parents would get angry, telling me to stop faking.
Then I got a rash that went away in the tub, but was back as soon as I got out. So my parents took me to the hospital.
The doctors didn’t know what was wrong with me. I spent 5 months almost in the hospital, just doing tests. Cat scans, x-rays, bloodwork. You name it. And nothing. They had no idea. So they diagnosed me with some type of cancer. And I started treatment.
I lost my hair in clumps, and my self esteem was lowering every day, with every brush stroke. I didn’t know what was happening to me, and was very scared. I woke up one morning at home, unable to move, I couldn’t even lift my hand to my face. So my parents took me back to the doctors.
In the hospital, they bent and twisted my sore body, more than I felt, at the time, they needed to. The pain was excruciating. Every joint in my body, from head to toe, was hot, and inflamed. I felt broken. 5 years old… What’s happening to me?
I stayed in the hospital for 11 months. I slept, ate, and went to school there. My parents would take turns visiting me, with my 3 year old sister. My mother was pregnant at the time. And my father worked from 6 am to 6 pm, 6 days a week. I felt alone. And scared. Broken.
I spent so much time in my bed at the hospital, not wanting to leave my room, to explore the rooms of other sick patients, more so than myself, that the tendons in my ankles seized and shrunk, and I was unable to walk – even just put my foot flat on the floor.
I spent 2 years in a wheelchair once I was allowed to leave that awful place. I had no friends, I went back to school in grade 2 for 14 days, and was homeschooled the rest of the year. My teachers put me into a small cubicle, with my desk and my wheelchair, a pencil and my homework. And closed the door. I got no recess, and was only allowed to leave when I had to use the bathroom. The children teased me, and called me names. There was no sympathy for what I had been through, or how I was feeling. I felt alone.
Once a happy little girl, with a beautiful, bubbly personality, I became a sad, lonely, depressed little girl, with no friends, and no smile on my face. I thought of suicide. At 7 years old! I had no one.
My parents enrolled me in a therapy class at the Glenrose rehabilitation hospital in Edmonton, where I would do various exercises, and do them with other children, burdened by the same disease I was suffering from. I met some very wonderful people, and eventually, after about 5 months, I was slowly starting to walk again. I would be able to stand on my toes and take some steps at first; then I could walk a little further on my toes. Eventually I was able to put my foot flat on the ground and walk with a walker, for I could not balance myself yet. Then, full-fledged walking. I was proud of my accomplishment!
Eventually, I learned how to swim at the hospital. And they made a group for us, where we did arts and crafts, and each craft helped with our range of motion in our hands, and our strength. And swimming, we would play tag, and learn how to swim, and do exercises in the pool.
These children were the only friends I had. And after 2 years… I began to smile again. I laughed, and was bubbly and happy! But, I was still not me. I would sleep with casts on, called splints. That would keep my joints in one place, and lessen my chances of deformity. Uncomfortable, I would remove these splints every night, just to fall asleep. And now my toes are crooked, and need surgery. My fingers are bent and twisted. My legs are bowed, and my self esteem is low.
I look back on my childhood, and realize, I never really had one. Since I was 5 years old. I’ve had my bloodwork done every month, so often, I know how to take my blood myself. The whole process. I do stretches and exercises every day. Contrast baths, and I have taken over 30 different kinds of medication, from 1-8 pills a day, two needles every night, two syrup, to a 1500$ prescription every month.
I’m now 18, almost 19 years of age, and am still struggling with this crippling disease. I have never been the same. Rheumatoid Arthritis is a horrible illness, I would never wish upon anyone. I am a beautiful young WOMAN now that has been emotionally scarred by my childhood. I stay strong however. That’s the key. You must be determined to prove judgmental people wrong, but not hurt yourself at the same time. I have overcome many obstacles in my short life. Those obstacles have made me who I am today. Although I cannot do labour or play contact sports, I’m working and I’m going to school; I exercise every day, and eat well. My Rheumatoid Arthritis has been in remission for almost a year, and I have no one to thank but myself.
Don’t let this disease control your emotions, and self esteem like I once did. Show it who’s boss! And you’ll feel great! Stay positive, and enjoy your life. Life is too short to be miserable all the time. So do what you still can, and work towards doing what you used to be able to. Last month, I sat on my knees for the first time in a few years, and it feels great!
This is Nancy’s onset of Rheumatoid Arthritis story, in her own words.
In 1979, I was living in the Midwest as an athletic and active 14 year old. Along with soccer, field hockey and tennis, I was a competitive swimmer and springboard diver. During one of my diving practices, I “hurt” my shoulder. They were sure it was damage to the tendons or ligaments—after being treated by a family friend for a “pulled shoulder”, it seemed to get better, but then the other shoulder acted up. It was assumed I was twisting the wrong way during my dives, so no more dives with any kind of twist. I was “fine”.
Then 2 years later, there was a move to Florida in the middle of HS and some family dynamics changing (a “slightly” traumatic time). I began having difficulty with stiffness in mornings and just constant aches and pains in symmetrical joints, mostly in hands, elbows and feet. During tennis season—my elbows and feet were terrible. My friends affectionately called me “Granny Nanny” because of the way I walked. However, my aches and swelling were written off as tendonitis from tennis, and treated with aspirin products per doctor. But my mom knew there was something more to it, and pursued many doctors to find out the reasons since I was just not myself. Today, she probably would be considered having Munchhausen by proxy. In hindsight, I am glad she was so persistent.
During that summer I was turning 17, after being misdiagnosed & treated for tendonitis and osteoarthritis, I went on a trip back to the Midwest with my dad to register at the University of Missouri. During our visit to St. Louis, my mom arranged through some friends for me to be seen by a rheumatologist for a day of tests and x-rays.
My dad had to go on a business excursion and my aunt was picking me up when I was done. By the end of the day, I was sitting by myself; the doctor came out to me in a private waiting room with a piece of paper stating I definitely had Rheumatoid Arthritis. He drew my lifeline on a sheet of paper. He told me in all seriousness, I would be in a wheelchair by the time I was 21; and under no circumstances, should I plan to go to any college north of Florida! Devastating?? ABSOLUTELY, I already registered at Mizzou — had my class schedule and my new school ID. Needless to say, I was a basket case as he left me with my correct diagnosis and my “lifeline.”
Back to Florida was a long drive. My dad tried his best to cheer me up and make “light” of the situation. When we were back home, I remember my mom taking out their insurance book and basically did “Doctor Roulette”—she just randomly picked a rheumatologist in Tampa associated with USF. Amazingly enough, this man changed our lives! He saw me within 6 weeks, and after running some of the same tests I had in St. Louis, (which unfortunately I am not sure exactly which ones, but I was probed & scoped and x-rayed from every angle)—he sat down with my mom and dad, looked all of us in the eye, and point blank asked me if I wanted to be in a wheelchair? Well duh–that was a stupid question! Then he asked my parents the same thing, and frankly said—“Then you won’t!!!” He explained part of dealing with the diagnosis and treatment is mental. He was honest and said it would be a rough road, but medical science is coming out with new things all the time, so hopefully by controlling the symptoms– we could control the damage and pain. The glass was finally half-full!
Honestly, 30 years later–many different protocols and 2 other autoimmune diseases later (Myasthenias Gravis I n 1991 & Non-Hodgkin’s Lymphoma in 2002), I believe if it had not been for Dr. G’s directness and optimism, I may be writing this from my wheelchair or not here at all to write it. The one thing I have always held onto, in the worst of times, is that God is in control, and the disease will not control me! It’s hard & humbling at times, especially when my husband or friends have to help me out of bed, or when I bump a joint and feel the aftershocks for hours. But mentally – it won’t take me down!!! I was fortunate to have a mother, who up until her dying day, made it her mission to make sure I got superior care, whether I was away at college or back home starting a career in teaching.
Today, I can’t look back and dwell on the “what if’s” and “what could have been.” As I move forward day by day, I still have those moments – I miss the way things used to be…. I know now I was also chosen as a warrior of this crazy misconceived disease. The past 8 years I have been on the “Cure Cancer” bandwagon, but now I know it’s time for me to step up to the RA plate, and work on helping us to find a pain-free / damage-free future for the children and adults affected by this disease. And so my journey continues…
This is Kathleen’s onset of Rheumatoid Arthritis story, in her own words.
I was diagnosed with RA on Jan 17, 2001 at the age of 35. I had probably had it for at least a year prior to being diagnosed. I was very active at the time, playing soccer in a women’s over-30 league and in a golf league with my husband, among other activities.
The first symptom that I had was waking up one Sunday morning with a huge discolored elbow and not being able to straighten my elbow. I had a soccer game that day and still played, telling everyone that I could not do throw-ins. When they asked why, I showed everyone my elbow. Comments ranged from “Are you sure you should play today?” to “You need to go see a doctor.”
I went to the doctor the next day and was told that since I am very active, I probably strained it without realizing. It was x-rayed and I was sent home to rest.
Approximately one month later, my left hand became very swollen, red and hot to the touch. Again, I went to the doctor and was asked what I did to it. When I said, “Nothing, that’s why I am here,” my hand was x-rayed and I was told that it was probably a spider bite and sent home with an antibiotic prescription.
Approximately one month later, the same thing happened to my right hand. Again, I went to the doctor and was told that it could be a little carpal tunnel syndrome since I work with computers. I said, “Don’t you think these odd occurrences could be related? I have been here three times in three months and prior to that, had seen you twice in three years.” I was sent on my way with no further tests.
Several other small, odd occurrences happened over the next several months and then one day, I woke up with severe pain in my right hip. I went to work and by the end of the day, I had trouble walking. That night, it hurt soooo bad that even after several Tylenol; I could not sleep, nor find a position to lay in that my hip did not scream with pain.
Around 7 AM the next morning (Sat), my husband called the doctor and received the after-hours answering service and explained the situation. They paged a doctor who then called and scheduled an appointment with us for that morning at a different branch of the same physician’s group. We went there and saw a wonderful doctor who, when I explained what was happening, immediately stated that she was very concerned and wanted to do some blood work.
She said that what I was describing could be lupus, Rheumatoid Arthritis, Lyme disease etc. She examined me, drew blood and sent me to the emergency room to have my hip checked out to rule out sepsis because I had such acute pain. They drew blood in the ER and said I had an elevated sed rate and asked if I had been diagnosed with RA or lupus. I was given an anti-inflammatory shot in my hip, and a follow-up was scheduled to review my blood work results with my regular family physician for the following Tuesday, Jan. 17, 2001
The doctor walked in and with the bedside manner of a wet rag said, “So do you already know you have Rheumatoid Arthritis?” Tears ran down my face as I said “No – that is what I am here to find out.” I was scheduled to see a rheumatologist and prescribed a steroid pack to ease the pain until I had my appointment.
It turns out I have a negative Rheumatoid factor, so I don’t know how this doctor diagnosed me without even examining me further. Needless to say I don’t go to that practice anymore.
My first visit to the rheumatologist was awful. He was an older man with a very demeaning manner. I am very straightforward and I told him that I didn’t like how he was speaking to me. He got a little better after that, but didn’t like having to answer all of my questions that I had in my notebook that I brought with me. He put me on prednisone and Plaquenil, said I had “pandemic arthritis” which meant that it came in cycles and was not present all the time.
Well – soon after, it worsened and became present all the time. It was incredibly debilitating as all of you know, and he steadily increased my prednisone until I was taking 30 mgs per day. I went from being very active and weighing about 140 with a 21 % body fat to being a couch potato, weighing 175 in a matter of about 4 months. This eventually ballooned to 210. I was miserable.
To make a long story short, two rheumatologists later, I now have a great doctor, with a very caring manner and am doing much better. I get Orencia infusions every 4 weeks and also still take the Plaquenil and anywhere from 1-5 mg of prednisone per day. I have had synovectomies on both knees, have severe damage in my left wrist, and otherwise am doing pretty well. I can no longer run and play soccer and other organized sports like I used to play, but I do exercise daily and have learned to modify and find things that I can do. I walk almost every day and swim when I can. When my hands aren’t too bad, I also ride my bike. I have a 3 (almost 4) year old daughter and she keeps me active as well.
I try to stay positive and focus on what I can do instead of what I can’t do and that works for me.
A lot more has happened in the 9-10 years with this disease, but that’s how it came to be and where I am now. RA is a really tough disease to deal with because of the unpredictability and severe pain and fatigue that set in at times. I do get tired of hearing the comments of “Aren’t you young for that?” and “You must not have it that bad…you are so active,” etc. that people make. I do have it pretty bad but try not to portray it that way. My glass is half full and I mostly enjoy life with my husband and my almost 4 year old daughter, Grace.
This is the onset of Rheumatoid Arthritis story of Richard, in his own words.
Hi Fellow RA’ERS, here is my story, after almost five years of increasing joint pain and stiffness, that slowly but surely began to encroach every aspect of my daily life, adding to this as well, would be several visits to see my doctor. Quite unbelievably for me was my doctor’s inability to diagnose what these aches and pains were due to. Despite several routine blood tests, the eventual diagnosis was depression.
How absurd, but true my doctor diagnosed depression as the cause to my aches and pains. To cut what is a very long story quite short, five years of going back and forth to the doctor and being referred to a number of so called specialist, eventually I was referred to a consultant rheumatologist consultant, who carried out a number of tests ranging from bloods to x-rays and bone scans, then eventually diagnosed that I was suffering from Rheumatoid Arthritis.
Around about the same time I was also diagnosed with Crohn’s Disease and Ankylosing Spondylitis.
I have suffered from all three conditions for just over 13 years, and recently the R/A consultant retired and I was then referred to another R/A consultant who wanted to re-assess my rheumatic issues and treatment. After undergoing several new tests ranging from bloods to x-rays and an MRI scan of my lower back, I have been informed that I am not suffering from R/A as previously diagnosed, but I have what is defined as Enteropathic Arthritis associated with my Crohn’s Disease. Despite asking my current Rheumatologist how could I be diagnosed with R/A thirteen years ago, yet thirteen years later be told that I do not have R/A but another form of arthritis, the question cannot be answered.
Apparently it is not uncommon for misdiagnosis where arthritic conditions are involved. Anyone out there with a similar experience?