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Ann’s Rheumatoid Arthritis story
Roxies’s Rheumatoid Arthritis story
Doreen’s Rheumatoid Arthritis story
This is Ann’s Rheumatoid Arthritis story, in her own words.
I was diagnosed with Rheumatoid Arthritis at the age of 21 (1983). However, I do not remember ever walking downstairs in the morning without pain. Every morning, I would wake up and, when I put my feet on the floor, it took my breath away. My mother had what she called “arthritis” (probably RA, too) and would walk down the steps one at a time. I figured that this was “normal” and did the same thing. She never complained, so I never complained.
In college, I was appointed to a committee with the National Education Association which required me to fly to meetings in Washington, DC. One time, I noticed that my wrist was extremely painful and swollen. (My flares are never symmetrical.) I thought that it was broken. At the suggestion of some committee members, I took a cab to the ER. While there, they did not take an X-ray, but did take blood. The doctor told me that my white blood cell count was “off” and that they wanted to admit me.
Since I was convinced that the wrist was sprained or broken, and mad that they didn’t take an X-ray, I walked out and went back to my committee meetings. The doctors didn’t take that very well. When I came home to Erie, I went to see an orthopedic doctor for my wrist. He, too, drew blood. When I called for the results from a pay phone at my college, he said, “You have rheumatoid arthritis.” I ran to the library for the nursing students. A book described RA as the “most crippling” form of arthritis for which there is no cure. I think I cried the rest of the day. I saw the doctor in Erie once more. He said that the only thing I could do is take aspirin four times a day.
Luckily, my parents immediately called my dad’s cousin at the Cleveland Clinic. He is one of the top rheumatology/immunology specialists. (If you have to get a disease, keep it in the family.) My cousin, Lennie, took one look at my X-ray and asked, how long have you been in pain? My mother answered “just a few months.” He sent her out of the room and asked, “How long have you REALLY been in pain.” I told him that I couldn’t remember NOT being in pain. He said that the X-rays said as much. Although he put me on the usual anti-inflammatories (Feldene, Plaquenil, etc), within several months, the disease progressed so quickly that I could barely walk. I remember looking across my college campus (I was an education major) and thinking that I just couldn’t do this anymore! My hands, luckily, were not bad, only my thumb seemed to fall apart. Unfortunately, it was the thumb that I needed to write. Essay tests were TORTURE! Within two minutes, I was in so much pain that I couldn’t write.
As we quickly ran through the levels of drugs, Lennie placed me in the trials for methotrexate. I ended up choosing to go to a law school in Ohio just to be close to Cleveland Clinic. Eventually, we got the RA to the point where it was manageable. Never without pain, but manageable. When I met Scott, now my husband, I warned him of the prognosis for the disease. I may end up in a wheelchair, but I’ll be hell on wheels! 🙂 He is truly a brave, wonderful man! After working on this Hill for three years, we decided to start a family and move to Pittsburgh. While pregnant, the RA disappeared! I mean, really DISAPPEARED. So this is what normal people feel like in the morning! I felt like I was walking on air! No foot pain. How devastating when it came back after giving birth. 🙁 It took a long time, and new treatments, to get it back under control.
Over the years, I’ve found that we patients have to be very aggressive in seeking treatment. I had a doctor in Virginia, on an HMO, who balked at referring me to a rheumatologist. He asked, “What makes you think you have RA?” I said, “Well, the top specialists at Cleveland Clinic seemed to think I have it….” Every single doctor has commented on the drug list: “Gee, these drugs are pretty powerful, let’s reduce them…” and so on. Because I was lucky enough to have Lennie as my doctor for years, I knew what a great rheumatologist should be like. I have fired several along the way.
My late brother taught me that the patient is the boss, not the doctor. We hire and pay for them and they are supposed to work for us. I decided, after putting up with too much pain for a while in DC, that I was through with being a pushover. I’m polite, but I ask doctors to define terms and explain things until I understand. I really don’t care if they are in a hurry–I need answers. I had a great rheumatologist for a few years in Pittsburgh, but he died. I tried several others, but they were too conservative. My philosophy has been that I have a lot of years to go with this, and I don’t want to give an inch! The conservative philosophy is “Let’s give it a few months and see if it goes away.” I ended up back with Lennie in Cleveland. This year, he referred me to a doctor in Pittsburgh, whom he trained.
For a few years, I managed pretty well. I had pain, but could still be active. I took karate for ten years and got my blackbelt. Deep down, I resented the fact that it took me so much more pain and energy to do what others could do without sweating. However, the disease progressed. Finally, every metatarsal joint in both feet were dislocated and overlapping. In the last three years, I have had six reconstructive surgeries in three years, and a total of eight months on crutches. Since I have a desk job, I could just prop my boot (with pins sticking out of the toes) on my desk and keep working. My feet are better than they were before, but still pretty painful. I like to think of my feet as a work in progress. The disease has now spread to my hands and, as a result, I am trying Actemra. I’ll keep my fingers crossed -figuratively, of course.
This is Roxie’s Rheumatoid Arthritis story, in her own words.
Age 32, June 1983, end of the school year. I was a bus driver for our local school. My summer was very interesting all the kids from the neighborhood would come hang with ME and my two children we would pull weeds from the flower beds and just play around, always in my bare feet. My feet started to hurt really bad. All summer long, my fingers hurt. I thought it was the weed pulling.
September. Time to go back to school and start my driving the bus again. Until Rheumatoid Arthritis hit me, I was sure I could handle it. I was sure it was just being barefooted all summer – until it hit my fingers and knees.
I was devastated to say the least one morning in September shortly after school had started. I woke up with stiff fingers, knees swollen, and could not walk. I yelled for my husband to come quick, “I can’t walk Jimmy something is wrong with ME!” Well it was RA & I knew it. My Aunt suffered from it. So I wasn’t in the dark about it I had seen what it done to my aunt. I called my mom and she come to my house. She made me appointment with a doctor. They, of course, sent me to a rheumy.
Blood work was done. End of story was full blown RA. My life as I knew it was over, so I thought. Depression set in extreme pain meds after meds and nothing worked. I was ready to die. I mean literally ready to die. All our dreams my dreams with my husband to open our own Body Shop down the toilet. I was going to help out in the shop but “Arthur” (RA) had other plans.
It took two years of being bedridden and four doctors later to get me up and walking again. Thank GOD for an understanding loving husband. I am now 60 years old and we are still together fighting the good fight of faith that we will survive this dreadful disease together.
My Jimmy has fibromyalgia. Was diagnosed in 2002 so we are fighting together for sure now. We are a good team. Because we share pain together and understand each other’s pain. Hope this isn’t too long. I could say a lot more but it’s a lot to type when you have deformed fingers…I must say I am doing pretty good 27 years later. It’s been a long journey, lonely at times but I am a survivor, strong-willed I won’t give into it. Arthur hasn’t won yet.
This is Doreen’s Rheumatoid Arthritis story, in her own words.
My name is Doreen and I am a 45 year old female. I have always been a very active person but not an athletic type. One Saturday morning in August of 2009, I woke up with a sore knee. This was not unusual for me because I have always had “weak knees” that would flare up now and again. I was told it was because as a child I had Rheumatic Fever and it had affected my knee joints and caused them to be weak.
However, this time was different. By Saturday night I could not walk and my knee had swollen beyond recognition. Sunday morning my husband took me to the Emergency Room. They did an x-ray, blood test, gave me crutches and pain meds and sent me home. I was told to call the orthopedist the next day. I got an appointment (4 days later) and was told there was nothing wrong. I asked for an MRI because I knew something was wrong. When the results of the MRI came back, I was told it was just synovitis and it would go away.
Two weeks later, I still could not walk and was in excruciating pain. I called my GP and he saw me right away. He ran several blood tests and could only determine there was inflammation in my system. He referred me to a rheumatologist. After a 1 month wait to get an appointment, I arrived at a rheumatology office. The doctor was certain it was Lyme disease. More blood tests and waiting. The test was negative; he referred me to a different orthopedic doctor, which would be another 1 month wait for an appointment.
By now it was the end of October and my knee was still swollen beyond recognition and I was still on crutches, even worse the knee was locked. One morning when I arrived at work, I knew something wasn’t right; my lower leg was a strange color. I called my GP and he sent me to the Emergency Room and had an ultrasound done. Result: a blood clot. They figure it was from extensive long term swelling and non-movement of the knee. I was put on Coumadin and shots of Lovenox.
The day arrived to meet with the new orthopedic doctor. It was now early November. He looked at the first MRI that was done in August and determined I had a torn meniscus. Surgery was scheduled and I was thrilled to have a diagnosis. My excitement was short lived. After surgery, extensive therapy to unlock the knee, and 3 aspirations of the knee, the swelling refused to go away. It was now March of 2010, the orthopedic surgeon decided there was something more going on and he suspected Rheumatoid Arthritis.
He referred me to yet another rheumatologist. I was thinking here we go again. While waiting for the appointment, my symptoms grew from just my knee being swollen and painful, to my hands, feet, shoulders and elbows. I was beginning to think I was a hypochondriac because every day I would wake up with something else hurting and not being able to do daily routine activities. I couldn’t climb stairs, blow dry my hair, dress myself, carry groceries, lift my arms, or open jars. Picking up a coffee cup was some days impossible. I am an Executive Director of a very large Museum and need to be able to perform various tasks throughout the day. I was now being forced to ride a motorized scooter in order to go through the gallery because walking the 80,000 sq. ft. building was impossible.
May 2010 finally arrived and it was time for my appointment with the new specialist. Once again, my husband and I took another day off of work to go to yet another appointment. Neither of us had much hope of an answer at this point, but we were both wrong and surprised. My new doctor, after reviewing all of the information and test results, gave us hope at finally understanding what was happening to me and assuring me that I wasn’t crazy. The diagnosis was Rheumatoid Arthritis.
It is now July 2010, almost a year later, and many tests later. I was recently prescribed Plaquenil and prednisone. Within days I was able to walk, brush my hair and many other daily activities that I have been unable to accomplish for months. Most days I feel pretty good and can perform most daily tasks at home and at work. I realize I have a long way to go in understanding RA and dealing with this painful disease but at least now I know what it is.
The most difficult part of this journey has been the unknown. There are so many physicians that think you are faking the pain; you are a complainer or someone who is seeking pain pills. I am glad I have a very understanding husband and a supportive family. I also had a GP who was as determined as I was to find out what was causing all of the symptoms.
After reading information regarding RA, I found some interesting facts that apply to me. My father was of Native American decent. His mother had arthritis. I do not know what type; I was young when she passed away. Two of his brothers have been diagnosed with arthritis. I do not know at this time what kind, we are not that close, but I plan on finding out.
Thank you for the chance to share my story.
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Ann, your foot looks just like my right foot (except decades older)after the reconstructive surgeries, and I consider the big toe slant to be a bad outcome, since my left foot, that had the very same bone & synovia removal and pins, etc., is perfectly straight. Did you have bunion surgery as well? The doc fused my toes and the upward slant on that one is set at too much of an angle, creating other walking problems. I’m calling a moratorium on surgeries that aren’t life-threatening, because I’m 77 with other health problems, but it would have been nice to have them both straight!
Roxie, Have you considered joint implants in your hands? I had them done around the time I turned 60, and they held up for many years under the constant abuse of being a working musician. Cosmetically, I wouldn’t have them done, but if I were younger, I might again, to make them more functional. I can type, even with them deformed, because there’s hardly any synovia left to get painful inflammation in. My feet I had reconstructed in my late 60’s and even though hardly perfect, at least I can walk, which I couldn’t when they were all dislocated. Best of luck.
Oh, Ann, I meant MINE look decades older–how silly of me. So sorry.
Doreen, it’s hard to understand how so many doctors could have been so dense about recognizing and diagnosing RA! Sorry you had to go through that frustrating process. Glad you are getting good care now.
I appreciate all those who shared their story and there were so many things I could relate to or are starting to see rear it’s ugly head. And while I hung on every word there was one thing that really jumped out at me. I have often wondered if there was a link to my Native American ancestors which were Eastern Band Cherokee and it may be next to impossible to find out since most were on the reservation several hours away. I did meet some of them when I was a young girl but even though my greatgrandmother lived to be 90 she has been passed for more than 30 years. Several of my cousins have or had RAD as did my sister. Does anyone know if there is any research on this.