Charlotte’s Rheumatoid Arthritis story
Janette’s Rheumatoid Arthritis story
Shelley’s Rheumatoid Arthritis story
Here is Charlotte’s Rheumatoid Arthritis Story, in her own words.
I come from a long line of loved ones that have had the autoimmune disease Rheumatoid Arthritis. After many years of misdiagnosis, I now live this same reality and am determined to do anything and everything to make my mark in the fight against Rheumatoid Arthritis. I am now forty six years old. I was officially diagnosed with RA in November of 2008.
My first signs of this dreadful disease began surfacing in the early 1990’s but I ignored them and chalked up all weird sensations, weak wrists, pain in hips, etc. to overuse. In 1999, I began having strange occurrences with my eyes. They were often very dry, red and irritated. After several trips to the family doctor, prescriptions and different diagnosis throughout that fall. I finally went to our eye doctor. That day has always haunted me. He looked things over and then stepped back and said, “Is Rheumatoid Arthritis in your family history?”
I remember feeling dizzy and speechless but managing to mutter the words, “yes”. He went on to explain that he had only witnessed symptom’s like this in others with something called Sjogren’s syndrome and this goes hand in hand with the autoimmune disease RA. He gave me scripts that day, strongly encouraged me to see a doctor as soon as possible to be tested for RA and sent me on my way.
I cried for a week straight. I was tested immediately through our family doctor and I was “negative.” After seeing the pain on my husband’s face, my Mother’s agony, and going through the week of willing myself not have this disease that had been attacking my family for years, it was music to my ears and everything I wanted. “I did not have Rheumatoid Arthritis”. Everyone was happy, life was good and I shut that door and never looked back.
I had married my husband when I was twenty years old. We had two beautiful sons and a life to get on with. When my Father came that Christmas to visit and heard the news. He smiled widely and said, “You take after my side of the family”. My parents had been divorced since I was ten years old. My Father was now expressing his disgust for this disease also and I hung onto every word. I had feared nothing more through my childhood and young adult years than the thought of having RA. I had haunting memories of my Grandmother and harsh daily reality of what it was doing to my Mother. “I did not have RA; the test proved it and life was good”!! I had no idea that there were such things as false negatives or something called Seronegative back then.
When I was about five years old, the visits to Grandma’s and Grandpa’s house suddenly changed. Grandma and I were walking home from church one Sunday and she was quieter than usual and walked slower and with effort. At one point we stopped for what I thought was a rest. I did not know it at the time but later found out that my Grandmother had been diagnosed with RA the previous year. Not only was the autoimmune disease aggressively attacking her once strong body, but her eyes were now affected too. I could read very little but recognized all letters in the alphabet and could tell Grandma what the street signs read by spelling the word out to her. Grandma looked worried, tired and gently took my hand as she explained to me at five years old that we were lost. “Charlotte, spell for me what that word says on that sign. I cannot see it.” My grandmother eventually found our way back home after going in circles by me reading the signs to her.
It was then, that I first learned about Rheumatoid Arthritis and every trip thereafter, I could see and was aware of what it was doing to my Grandmother. We never went on walks after that. My visits were now spent mostly with Grandma sitting in her “Special chair” and the Grandkids taking turns sitting on the great big arm of her chair when interacting. We could no longer sit on her lap or throw our arms around her neck to hug her. Grandma hurt and now intimacy was when she reached out and held our hands as we sat on the arm of her chair. Her hands and feet were already showing the crippling effects but regardless my Grandma’s hand rubbing across my cheek or along my arm was special. By the time I was seven or eight years old my Grandmother never left that chair without assistance. She walked with a walker on her good days. Grandma had RA nodules all over her body and she could do nothing for herself. I remember her staring off into space sadly and putting on that very special smile when speaking to her directly. I know now, that the disease had not only taken my poor Grandmother’s body over but was also attacking that beautiful soul of hers that I so loved.
I was thirteen years old when my Mother was diagnosed with the same ugly disease. I was escorted to the hospital by family members and remember walking into the hospital room and seeing her. Nobody had to say a word. I knew. There laid my thirty-three year old Mother and her hands and fingers on both hands in casts with steel rods protruding and holding her digits into place Her feet were in casts of some sorts. It is a blur. I was horrified and feeling emotional pain that was far bigger than my thirteen years. What I do remember is running out of the room and crying the words out, “I hate Rheumatoid Arthritis.”
Today all I have left are the memories. A childhood made up of the distinct timelines of before Mother’s and Grandmothers diseases took over. The memories of before are of two vibrant, strong young women. Grandma worked back when most women did not. They played with their children and grandchildren, lived life, worked and moved freely.
Then there are those memories of after. They both were very ill throughout the disease and crippled physically and emotionally. Steroids, aspirins, ibuprofen, and gold shots were the only medications available. Both Ladies died of complications due to RA. I was fifteen when Grandma died. I spent that summer going over daily and helping. On several occasions I heard her cries of frustration. She felt like an imposition to my Grandfather. She begged him to put her in a nursing home and go on with his life. Her spirit was shattered. She often spoke of dying and being tired and not wanting to live like that anymore. She died the very last day of August that summer in 1979. I remember feeling like she had willed herself to die right before my very eyes. At my Mother’s death bed in September 2006, as my Mother’s liver shut down and we had five days to say Good bye. A doctor told my husband that the drugs that Mother had taken for the RA throughout the years unfortunately cause damage to persons liver and organs. Ironically, both women were sixty two years old when they died. Once again, all the more reason for me to deplore RA. Right?!!
My mother would have been sixty-three a month after her death. I took nine days off from work that year to get through her first birthday without her. October twenty-fifth came and I stayed busy. I painted my living room and found things to do because I was still in deep mourning and longed for the phone calls, hurt for my sons and, my husband and was angry. I had since learned that my Mother’s two siblings also had aggressive RA. One of my uncles was doing wonderfully on a new biologic drug and the other was not. He had tried everything and the disease was winning. By November of 2006 I could not move my arm after remodeling my living room. Overuse, I was attributing the pain in my arm and shoulder to all of the stressful events that were happening. My sister in law lay dying of Leukemia in a hospital and lost her battle in December. After all, I had lost Mom and Anne in two and a half months. My husband’s job of twenty five years was ending. The factory was closing and they were shutting the doors eventually. That was it. The stress was taking a toll and everything would get better soon.
My husband lost his job in October of 2007. By then, I was experiencing pain frequently in shoulders and arms and sick all of the time with respiratory infections. I would no more gain strength back and within a week or two later. I was sick again. Still, I would not give in to the thought of me having the dreadful disease that had ravaged my family and caused a lifetime of pain and agony for everyone. In November of 2008 I had had enough. My family had noticed the physical differences and the emotional battering that was I going through. My brother in law shocked me one day when he stopped by. “Have you had enough Char? When is it going to be enough? When will you go to a doctor to get the help you need?” I stared blankly and then burst into tears. If my brother in law noticed when visiting, what was I putting my poor husband, sons, granddaughters and the rest of my loved ones through? My husband had found a new job the month before and arrived home late one night. I could not sleep and had no movement in my neck. I sat down with him and cried. It was the first time I remember saying, “I have RA and am going to be tested again”. The rest is history. By this time, I was positive and the results came back quickly. My doctor whom I love apologized for not finding it nine years before. Or, not looking into things differently. I take full responsibility for that. Like, Grandma willing herself to die, I willed myself to not have Rheumatoid Arthritis.
Am I a different person because of the RA? Of course I am. I love deeper, talk sweeter and have more patience than ever before in my life. More important, it was not planned but my will to fight this disease like it has never been fought before was automatic. My children and grandchildren will never see my spirit broken. I am determined to take advantage of all of the new treatments and breakthroughs that are out there unlike, my Grandmother and Mother who did not have these opportunities. I want the kids to be able to fight this monster with a vengeance if need be. I am going to be the new face of RA. This journey has been one of great sadness and joy. I am in a much better position than my poor loved ones were in when battling this disease. I am winning and have no plans of ever giving up. We need to find a cure and that is why I am here. I know that My Grandmother and Mother are looking down proudly and if I close my eyes and sit in silence, their cheers are heard. RA will not win this war!!
Here is Janette’s Rheumatoid Arthritis story, in her own words.
My daughter was born 4/4/85, I enjoyed 8 weeks of paid leave to be with her, bonding with her free of stress and work. It was rare in those days to have a paid leave of absence, as a regional director of a cosmetic company; they allowed me 6 weeks and then two weeks of phone work before I came back full time. It was a wonderful time with my new baby and I decided my mother would care for her until I found suitable childcare.
On my first week back to work I developed a horrible eye pain. The redness was in one eye and it was limited to one quadrant of the white part of my eye. I made an appointment to see an ophthalmologist. He diagnosed it as an eye infection; the meds he gave me didn’t help. This so-called infection gave me violent pain in the eye, I became photophobic, having to wear sunglasses all the time, uncontrollable tears streaming down my face, even at night. The pain felt like daggers piercing through my eye and going into my brain. I visited the next tier of optic specialist, probably 8 in all. One doctor gave me a drop called Blephlimide, this drop helped, it had steroids in it. I had to use it 3 times as much as told but it gave me some relief.
The inflammation/pain in the eye started to move, it moved in quadrants, left upper to right upper than included lower right etc… My boss recommended me seeing someone at the Eye Clinic at the University of Miami. I made an appointment and had to wait a month to get in to see one of the students/doctors. With Blephlamide drops in hand and using bottles of Tylenol I waited till that day. When I filled out the paperwork I was a healthy 25 year-old with one problem, eye pain.
After reviewing my paperwork, my new doctor walked in looked at my eye and asked me if my hands hurt. What the heck, I thought these doctors were the best, I come into this specialty clinic with hopes of finding out what is wrong with my eye that by this time I could barely see through it in the daytime and they are asking about my hands! He then added that I have arthritis in my eye and within a few months the pain will spread to the rest of my body.
He was right, a few months later I was ready for a wheel chair, then I found prednisone. It was 1985. No DMARDs, Biologics just the basics: gold, Naproxen, et al… 25 years later I found this site and no longer feel alone. It was a very lonely painful journey, thank you Kelly and all of your bloggers for being here.
This is Shelley’s Rheumatoid Arthritis story in her own words.
My RA started at the age of 14 months. I had been walking awhile when all of a sudden one day I started crying & could not stand or walk anymore. I would cry a lot of the time & my mom noticed my left leg was real swollen & red. When she touched it I cried more. She took me to doctor after doctor. It was 1956 and Polio was the thing crippling children. Some doctors said I probably had Polio & they all said I would never walk again. She would not accept the doctors views on this.
One day we had just moved to Oklahoma & somebody told her about a new doctor in Tulsa who just graduated. She was an orthopedic surgeon named Dr. M. P. (God rest her soul – she recently went to be with God after so many years helping people). By the time I went to see her, my left elbow was hurting too. She told my mom somehow that I had Juvenile Rheumatoid Arthritis & that I needed surgery to repair the ligament that had torn in my leg due to the RA. She did surgery & repaired my torn ligament. She said it looked like somebody had taken my ligament & just pulled it apart. The RA had made it weak so it had torn it in half.
After she fixed me, I could walk again. I was started on drugs, could not tell you what. I remember some small pills that were a light blue green color. I don’t remember much about those years. I remember all the pain & suffering. I remember all the doctor visits to see Dr. P. She always gave me yellow paper to write on & small red pencils to write with. I remember a lot of times I went in & they stuck a huge needle in my left leg to deaden it to the bone, then they stuck in another needle to drain the fluid off my knee. Then I got in trouble for not telling my mom that my knee was swollen that bad. When all the other kids were outside playing, I was stuck in the house & put in pure hot water in the bath tub to soak my joints. I was real red from the hot bath tub then I was stuck on the couch with a heating pad stuck on my left elbow & my left knee. Those were my 2 problem areas.
I remember all the kids making fun of me because my knee looked funny & I could not run like everybody else. In gym the only kids I could beat in while running around the playground was the “fat girl” in school. They laughed at me because I could not run. The last big flair was when I was 11 years old & they stuck the two huge needles in my knee. RA finally went into remission for a few years with just pain here & there, nothing too bad. I thought it was gone like the doctor said, I would outgrow it someday. I had about 11 years of thinking that I was OK.
In 1979 at the age of 23 I had my son. He did not like to sleep at night. So I was stupid & was off work for 8 weeks enjoying being a mom. I kept the house spotless & took care of him. I did not get much sleep, because he slept all day while I cooked & cleaned, then I was up all night trying to get him to sleep. I was not smart enough to sleep when he slept. I went back to work & started the birth control pills. Then it hit me bad all of a sudden – I hurt all over. I could barely move. My brother-in-law even said I would never dance again. They put me in the hospital & ran all kinds of tests for 3 days. I was put in touch with a rheumatologist. He said I had the RA again. So I started drugs again & after about 5 years I finally got better but was on drugs. Most of the time nobody knew anything was wrong with me, I kept it well hidden, and nobody saw the crooked arm or the big swollen knee or knew the pain I was in. I held down a full time job, cooked from scratch & took care of my son & husband, the yard, the bills, the cat, everything. I was managing to lead a pretty normal life thanks to the meds I took.
Then in 1992 we moved into my dream house with a pool. I had the stress of being off work trying to get our old house ready for renters & the new house put together, plus taking care of everything else like usual. It hit me real hard again. The drugs did not work & I was in a lot of pain. I was having trouble standing & walking again. I went back to Dr. & took drug after drug until I finally got some relief. I went in there every 6 months & the drugs Arava & Voltarin kept it at bay so I was pretty normal again for a person with RA.
Then in 2002 it started getting worse. They added more drugs to what I was taking. I tried every drug they make for the RA except the Biologics. Either it did not help or I had bad side effects to the drugs such as severe nausea or my throat trying to close down where I could not swallow or the bad painful sores in my mouth & on my tongue. I was allergic to most of the drugs I tried. The RA just kept getting worse and worse. I was able to do less & less. The pain was getting bad. In Jan. 2009 they added Prednisone & giving myself an injection of Methotrexate weekly since I could not tolerate the MTX pills. I hated doing the shots. I was getting worse all the time. The MTX did seem to help but then a year later I had severe nausea for 3 days after the shot. Every time I took the shot. So I quit taking it. Now not only is my left elbow stuck at 90 degrees, my right hip is real painful & stuck to where I can¹t hardly move it or open my legs. It’s hard to go to work & hard to bathe. I have to sit on a bath bench to bathe now. The RA has made both my knees bone to bone. My right hip is the same. I need both knees & my right hip done as joint replacement. Sometimes I get up & my right wrist & my hand & fingers are stuck nearly shut & hurt real bad.
I sit here a work all day long in severe pain even taking all the drugs I take. They say I need to add Biologics to my drugs. So far I have not added them due to fear of what they will do later. Plus the cost involved. My insurance does not cover injectables so I have to pay for them. My insurance will help with Remicade, but I am afraid to get on it. The cost is still high with insurance. I can¹t walk anymore unless I use crutches or a walker. I can¹t hardly even use a walker now. I am in my wheel chair most of the time. The pain is unbearable most days. You would think after nearly 54 years of me fighting this RA they would find a cure for RA that would not have such bad side effects or not cost a fortune to take it. Due to the RA I can no longer take care of my cat, my house, or my pool, or even wash my car by hand. If I can sit in my wheel chair I can cook & clean my tile floor in my kitchen sitting in my wheel chair. I¹m fixing to turn 55 & I get around worse than my 77 year old parents. I can¹t even go shopping anymore without help. My husband is now stuck taking care of all the house duties & laundry. He also helps me bathe. I pray someday soon they will have a cure for this awful, misunderstood disease. I¹m really sick of fighting it!