Laurie’s Rheumatoid Arthritis story
Debbie’s Rheumatoid Arthritis story
Alice’s Rheumatoid Arthritis story
This is Laurie’s onset of Rheumatoid Arthritis story, in her own words.
I am 54 years old. In the fall of 2001, I started experiencing low grade fevers every night and just getting tired. I was working full time nights as an RN in a hospital 3 nights a week. I went to see my primary doctor because I started having some heavy periods and right-sided pain. He thought I had an ovarian cyst. I went to my OB-GYN; he did an ultrasound and a laparoscopy but did not see a cyst, so back to watching. Summer 2002: I started with the night fevers again… back to the primary. I had a case of mononucleosis in the late 90’s, he felt maybe it was related to that, but more labs were inconclusive.
In February of 2003, my abdominal pain increased, and this time I had both ovaries with cysts, so we decided to do a total hysterectomy and take out the ovaries. I ended up being in the hospital for a week having blood transfusions because I had a lot of scar tissue from my previous C-sections. Five days at home and my abdomen blew up like a balloon with the suture line gaped open. I ended up back in the hospital for 10 days. They really can’t sew your belly back together again, so I was off work 4 months waiting for the wound to fill in by itself. During that time I started back in with the low grade night fevers, I saw an infectious disease doctor who put me on all sorts of antibiotics, and I kept telling him my hands were so stiff and achy. He thought it was because my body was just so worn down. I finally got back to work in August, still not the energizer bunny I had been.
Labor Day weekend, I woke up with my knee the size of a large grapefruit. Went to the ER, they x-rayed and drained it, put me on antibiotics thinking I had a bone infection. But they did also run tests for lupus and RA. The Rheumatoid factor came back mildly positive. I was referred to my rheumatologist, and at my first appointment I was started on methotrexate. By March of 2004 I was up to 20mgs of methotrexate and still hurting. We decided to add Humira to the mix. After 6 weeks I was feeling a lot better. I could even manage steps. I had a Caribbean cruise scheduled…I even managed to climb 5 flights of steps to the top of a Mayan ruin. I felt so good. But slowly the Humira faded. Over the next 6 years I have been on Orencia, Remicade, Enbrel, Enbrel together with Rituxan in a clinical trial, Simponi, and as of five months ago I am just back on Enbrel alone. It doesn’t help much, but it keeps me moving. I pray every day that researchers come up with a miracle cure.
In retrospect, I think I had signs of RA back in college in the 70’s. I remember two painful episodes lasting several days where I could not raise my arms to wash my hair. The nurse at the health clinic blamed it on my backpack. In the late 90’s my knees gave me a lot of trouble. I was very active working full time and was a band parent for my kid’s HS band. I ran the concession stand every weekend, stocked it during the week.
Looking back, I think I probably had RA in my knees then.
Since January I have come to think of my RA as an Octopus. The RA is the body, now I am having tentacle problems… Sjogren’s affecting my lungs, depression affecting my brain, cataracts in my eye, anemia and iron deficiency requiring IV infusions, and cardiac problems that doctors are “positive” are secondary to RA… I only have 3 empty tentacles… Hopefully, I can keep them issue free.
In the meantime, I am home on disability, having infusions, pain and cardiac testing. I am lucky to have my two grown sons to help me with heavy work around the house, as my husband is also disabled.
One bright spot has been the support I find online, especially with Kelly and the Warriors. It was an honor to meet Kelly and some of the Orlando area Warriors a few weeks ago, it’s nice to have someone who understands you for a change!
This is Debbie’s onset of Rheumatoid Arthritis story, in her own words.
I’ve been married for 27 years and I have three wonderful boys. We live in a small suburb of Philadelphia. About 10 years ago, while attending my son’s baseball game, I was bitten by a deer tick. They are very prevalent here. I had a huge welt, as well as the tell tale signs of a bulls mark on my neck. Thank goodness at the time I had long hair and I could cover it up. I went to the doctor explained to them that I had pulled a deer tick off of my neck about 4 days prior. At the time Lyme disease was not so much in the forefront aas it is today. She looked at the bulls eye mark and prescribed me with antibiotics. I also had blood work done to determine whether it was Lyme.
Shortly after being bit by the tick I had strange feelings in my hands, knees, neck and feet. I am not saying that the tick brought on these symptoms this is when I was more aware of them. For the next ten years I would go back to my doctor and say, “I do not feel right, I am tired, my body aches, I have fevers, and my joints hurt. For ten years my family doctor prescribed antibiotics, and sent me to get blood work done. For ten years, the lab came back that I did not have Lyme. I felt better after taking the antibiotics but that “good” feeling would not last long.
At the very last time I made an appointment with the same family doctor, I was surprised to find that he was not there, he was on vacation. There was a doctor filling in for him. I told this new doctor all the symptoms I was having. He again prescribed antibiotics and sent me to get blood work. I told him as I left the office that this has to be Lyme this time, I just do not feel right. Little did I know he was also asking for more than just the Lyme test.
I received a call from him a few days later and he told me that it wasn’t Lyme. I was crushed. Does this man think I was crazy, when I told him I had all these symptoms? No, it’s not Lyme, you have a very high Rheumatoid factor. You need to see a rheumatologist. I had no idea what this was. Didn’t know a single person who had this. I was shocked. I asked him hurriedly, is this something that will change, should I wait to call the rheumatologist? No, he says, you need to call today.
In the world of the internet, before I even called and made an appointment, I Googled Rheumatoid Arthritis. I found RA Warrior and read as much as I could. I asked to see my blood test results and continue to read about it for the next three months. I read books from the library, I read articles on the internet. When I went for my very first rheumatologist appointment I thought I was prepared. I had Googled and read for three months. But what I wasn’t prepared for was the rheumatologist himself. I didn’t prepare myself for him. He was rude, impatient; he even left the room to take a call on my first visit. Honestly I was scared. I forgot all that I read; I forgot to ask the questions I wanted to ask. I was scared.
He asked me rudely, “How do you feel?” Well, today I said, I felt kind of good. It was a better day. He said: “Why are you here then?”
“Well, I have not felt good the past ten years and my blood work showed I have Rheumatoid arthritis.” That day he ordered more blood work and I was told to come back in two weeks.
I walked out of that door knowing I needed to find a new doctor. I went to him three more times. He prescribed Plaquenil to be taken twice a day. After three months taking it, I told him I was getting a sore throat everyday and I suspected it to be the Plaquenil. “Impossible,” he tells me. He has been in practice for a long time and he has only come across one other person that this happened to. “Impossible,” he says. I knew that day, that would be the last time I would see him. Plus, I had Googled that as well. Yes it is an allergic reaction to Plaquenil.
I am currently seeing a new rheumatologist with whom it took 4 months to get an appointment. I brought all my blood work to my first appointment. After he walked through the door I knew I made the right decision. He looked at my blood work and confirmed without a doubt I have Rheumatoid Arthritis, but what the other doctor didn’t tell me, was that I also tested positive for Sjogren’s Syndrome. This accounts for so many of the symptoms I was having. The new doctor again has ordered blood work and x-rays. I am currently not taking any medicine right now and I feel every joint in my body. I will see him in two days; I need to choose between methotrexate and Leflunomide.
I am scared for the future, but realize I am not in this alone. I am thankful that I found RA Warrior and listen to the stories of others.
This is Alice’s onset of Rheumatoid Arthritis story, in her own words.
I was born four months premature, spent a long time in a humidi-crib. The doctors could see I had several issues upfront but were unsure how to diagnose. Later it was found to be Rheumatoid Arthritis, Ehlers-Danlos Syndrome, and now Marfan’s syndrome. My skin was very weak due to collagen problems with Ehlers-Danlos, my eye was squinted due to the onset of Marfan’s and my joints would swell and be difficult to move due to the RA. But, as I grew up I just didn’t stop moving; I had a brother and his friends to “keep up with.”
Often, keeping up with them would lead me into all kinds of strife. I would end up in hospital at least 1-2 times a year due to falling over and spitting my knee/arm/leg open. I would need stitches. The doctors would often ask, why do you think you’re clumsy? Is someone hurting you? I would just say I don’t know and no.
I would wake up most nights screaming in agony over the leg pain or arm pain and the doctors said “It’s just growing pain. You just have it worse than others.” I thought this was a bit strange since if this is what happens when your “growing up,”’ who would ever want to – it’s so painful!!
I was terrible in sport teams, I couldn’t keep up with the other kids. My legs would always hurt very fast and because I was so premature I ended up with lung issues – they both collapsed several times and are weaker than most peoples. So, I would sit on the side lines always feeling like some kind of freak as I was different to everyone else. I would be called lazy and stupid. Because of this, I always pushed myself as hard as I could. After sports sometimes I would come home have a hot shower and cry due to the pain. Again, it was just called “growing pain” and “deal with it.” My mum would always give me hot water bottles and calming tea and pain killers. It’d help but never totally dulled the pain.
Working at the library, my hands would swell and be very painful due to the repetitive book circulation. I worked in a very busy library where you could easily handle thousands of books per hour checking them in/out and filing them away to be shelved. Shelving also when I would bend down and up/squat by knees and feet would ache and swell.
Like school, I would come home every night and have a very long hot shower or bath and sit down for a few hours often crying in pain. I was given a permanent 25 hour position at the library. Over a year, I ended up having quite a lot of sick-leave due to pain and generally getting ill often due to public work and spread of disease. I often had counseling from my workplace due to the absence. Basically, if I didn’t do something about it (stop being in pain) I would get fired.
I was often put on ‘return to work plans’ where when I would get a huge flare up/pain which back then the doctors called a injury/sprain since they had no idea what was wrong with me. These “return to work plans” were degrading. I openly had people call me lazy or give me tasks I was not meant to do while being “injured” and I would do them because I was petrified and felt like a failure. It would hurt, I would get swelling and I would go home and sit and cry for hours about it. One time I had my arm in a sling after an operation and needed help with something, no one would help when I asked and the customer was waiting – so I did the task that I shouldn’t have done. I knew if I didn’t do it and the customer complained I would get in trouble, but if I did do it I would get in trouble. So either way was trouble. So I picked up the bunch of books and carried them up a bunch of stairs. My legs gave out and my arm trembled and I fell. My stitches came undone and I bled on my white shirt.
I sat there, embarrassed and defeated. I was apparently “lazy” and I felt it. I felt useless. I picked myself up but wondered about what on earth was wrong with my body? Why was it so painful? Why was this happening? Why am I not “normal”?
Several months later, events eventually led to the RA diagnosis. The Rheumy I have now said, “You can always remember that moment or course of events that made your RA switch ON, boy did it switch into overdrive!”
I was working at the desk and I was getting a bunch of books from behind the counter that were in a box. I picked them up correctly but the moment my back felt the pressure it started to hurt and it was one of the worst pains I had felt in my life. I was due for a holiday to visit my mother so I just grit my teeth and boarded the plane a few days later barely able to walk.
I returned to work a week after we got back, taking lots of painkillers. Then one day at work it got quite serious. That morning I remember rolling my ankle on the way to walk. It got hotter as I went along and went up to my knee which went from a normal knee to a “basketball knee.” Literally though my pants you could see this huge ball of swelling where my knee was.
I rung a number where nurses talk to you. They said to “call an ambulance.” This is a bit hard when you’re in the middle of work! So, I called a taxi to not make a scene. I was already being called a lot of names by people at work due to having time off, being slow, moving in pain’ I didn’t want “drama” to be added. So, I jumped in the taxi. This made it a bunch worse as when I lifted myself into and out of the car the knee buckled and I went down onto the floor. By the time I made it to the hospital my mouth was bleeding due to the insane pain my knee had I didn’t want to scream so I bit my lips.
At the hospital they drained my knee and said not to worry, but head back to work in a few weeks. So, I did. But, after a few months it didn’t help at all. I ended up on sick leave again and in hospital by October. Then, a wheelchair. I got more tests and operations finding nothing but 137 CRP. My knees got worse and I again saw a knee doctor. They looked at the knee more closely and said: “Hmmm, this is not a meniscal tear, this is degradation of the meniscus in your knee. You should see a rheumatologist.” Finally, someone was getting somewhere!!
The only problem was, the referral for the rheumatologist I was given could take up to a year to get an appointment. So, I waited a few more months…
Stuck in a wheelchair, needing to be fed, needing help to use the toilet and get on/off it, needing help bathing and getting around was degrading. I was screaming in pain nonstop. I was given very high dosages of painkillers like Endone. But it didn’t work. Morphine did – but I needed a lot of it. After a while and many hospital visits the hospital got fed up with seeing me like this. They rung the rheumatologist and said “You have to get her in now we can’t deal with this here.”
FINALLY on Monday I had an appointment to see a rheumatologist!
The woman lady asked why I was in the wheelchair. I just kind of hung my head in this shame I was feeling I could barely speak. She asked me to “hop on the bed” I just broke down and cried I felt like I was a three year old again. I begged for my mother. I knew getting out of the chair and onto the bed was going to hurt… a lot.
But, being stubborn I just bit my lip and did it. Screaming all the while.
The doctor looked me over and said “Yeah you have arthritis we will need to give you steroids and you will have to stay in hospital til you can walk again yourself.”
I didn’t want steroids. Nor, did I want more hospital time. By this time I was very underweight and unhealthy. Before I went to bed in hospital I was given 25mg of Prednisolone. That next morning the pain wasn’t as bad… and I could WALK. The first thing I did was go to the toilet by myself. I could dress myself for the first time in months.
They didn’t want to settle on RA since I was negative with the R-Factor. So, it was a very big battle to get benefits for disability from the government, but we eventually did as a few months later the doctors settled for RA. You can still have it without having the factor in your blood work but you need to pass other tests. The RA was classified as severe and may improve some but I doubt I could work more than a day a week. My world just fell out from under my feet.
Here I was thinking I will be back to work soon, just need right mix of medications – so was my boss. A few months later I was fired and given a redundancy payment.
Then a miracle happened. I called Simponi. To qualify I had to be on 20mg of MTX for 6 months and prove that it wasn’t helping, same with the steroids and sulfasalazine.
The first day of the self injection medication Simponi I could feel a difference. Two weeks later I could walk with a walking stick for a bit of the time!
I have recently moved to be closer to my mother for the extra support. I know that the Simponi is working well, I can’t fully use my body yet without a lot of pain, but it gets better every day. It’s nice to be able to brush my own hair or put my own clothes on most of the time. I still can’t put my own shoes on though!
The hardest part of having RA I find is the “looks” and what you know people are thinking. I wish there was a way to put people in my shoes to know what it’s like to be in constant agony and to just have to grin and bear it – I do this a lot because I don’t want people to then pity me.
Getting out of bed is brutal, getting into the shower is sometimes terrible especially keeping up with personal hygiene like leg shaving or washing hair. Then going out sometimes is hard because walking hurts a lot but not as bad as before so I do it to try and lose the steroid weight.
I just wish people would just accept me for who I am now and try and understand. That’s why I am glad for your website to help educate people. I am very grateful for my partner who does accept me fully understands the disease. He helps with the dishes and cleaning, he helps me do everything when I cannot. He tries to educate our family and friends.
I can now walk for 20-30 min unaided. It does tire me out and it uses up most of my daily energy but thanks to Simponi a lot is possible! My new Rheumy is wonderful she chats about everything and you can get to know her so that you feel comfortable to really tell her how your feeling. She is like a great counselor plus a rheumatologist! She is thinking because my CRP and disease count are becoming more normal I can get off the steroids which is my main goal.
You can hear more from Alice on her blog, Speed Demon with RA.