Robin B’s Rheumatoid Arthritis story
Dimity’s Rheumatoid Arthritis story
Abbee’s Rheumatoid Arthritis story
This is Robin B’s onset of Rheumatoid disease story, in her own words.
I am a 62 year old empty-nester, and was just diagnosed with RA. I’m fortunate to live in New York City, and am being treated at NYU Langone Medical Center, not only a wonderful medical facility, but one that understands the need for patients to be able to access their medical records. Coincidentally, my son is a second-year medical student there; maybe he’ll go in for rheumatology?
Thinking back, I probably first felt the morning tweaks of pain in my toes and fingers about ten or fifteen years ago. I thought it was/is osteoarthritis, and have not really had too much of an issue with more severe joint pain until this year. During the last decade, I did have surgery on my left ankle for a break, and meniscus surgery on my right knee; both times, the doctor advised me that once you have surgery on a joint you are more liable to develop arthritis. Both of my parents had arthritis too.
I own and run my own company, manufacturing a greeting card/bookmark combination called In My Book (www.inmybook.com). During a trade show in March of this year (Public Library Association Conference in Philadelphia), I found that while setting up and tending my 10 x 10 booth, I was no longer able to kneel or reach under the tables for more brochures & samples. Likewise, I had trouble hanging my backdrop & accent lighting. I’ve always been the kind of person to stand on a chair or ladder, scoot around on the floor and do anything else that is required of me, even though I’m getting up there in years. But this felt different.
In the few weeks that followed the conference, I started to have trouble sleeping on my side as I usually do. My hips hurt. I flipped from one side to another and really could only get (relatively) comfortable on my back. I also was having more trouble climbing stairs, which was particularly exacerbated when carrying packages. My husband and I spend most weekends at our place upstate, about a three-hour drive away. I began to have trouble getting out of the car and walking down the stairs to our house after these drives.
So in late March, after the conference, I made an appointment with a rheumatologist at NYU. She saw me in May, took a history, blood tests and did an exam. The doctor suspected Polymyalgia rheumatica. A week later when she telephoned with blood test results, I found out that my anti-CCP labs were 141, even though I did not have the Rheumatoid factor. My research (along with my son’s) pretty much convinced me that the level was indicative of RA. Bummer.
So between May and mid-August, I stewed over the fact that I had developed a chronic progressive illness, and yet it was not formally diagnosed. I wanted sympathy and support. I read and tried to absorb all the information I could find on RA. When I saw my doctor last week, she finally diagnosed me with RA (early, mild) and put me on 400 mg of Plaquenil/day. The suspicion had become a reality. I’ve signed up for emails from the medical records department and noticed that my C reactive protein climbed from 4.6 in May to 5.6 in August, so clearly the inflammation is building. In September, I was prescribed methotrexate (by injection), which seems to be more effective than the Plaquenil in my case.
So, I’m at the beginning of what I hope will be (but probably won’t be) a non-eventful journey. Thank you Kelly and fellow RA Warriors for keeping me company on the road.
This is Dimity’s onset of Rheumatoid disease story, in her own words.
In November 2010, I travelled from Sydney, Australia to Whistler, BC with a group of friends for the trip of a lifetime. I was 20 years old and ready to work, ski and play across Canada and America. About 2 weeks in, I woke up for work and couldn’t straighten my elbows. After about 10 excruciating minutes I’d managed to get both arms down to my side and sit up. I figured I was a bit stiff because I’d slept in the same position the whole night. I hopped down from my top bunk and nearly fell over. My feet were so swollen it was a tight squeeze into my 1 size too big shoes. The altitude maybe? My hands were swollen too. Trying to button a shirt, brush my hair and teeth took forever. And you wanted juice that day Dee? Don’t be ridiculous. Lucky I had woken up early!
After a few days of this routine I decided to head to the doctor. I was given a prescription for diuretic for fluid retention and sent on my way. After another week, there was no change and my wrists were really starting to hurt like they had been injured. I had slipped in the snow and landed on my wrists so maybe it was a fracture? The same doctor sent me for an X-ray, which came up clear. She then suggested Paracetamol, chicken soup and three days off work because being away from family at Christmas time must be “very stressful.”
I Skyped my parents straight away and they got my aunt who is a doctor to call me. She said I obviously had carpel tunnel and to go to a different doctor and ask for blood tests. I set off to the hospital. I went through a series of 3 doctors who had no idea what was going on – one even left me in the middle of my appointment to go have a chat with another doctor who he had been camping with in summer. By now I was feeling very scared, alone and the medical bills were starting to rise. I called my aunt again. She couldn’t believe what I told her. She gave me a list of the blood tests I needed, about 12 in total and told me to march back there and demand I got them. I was given to a doctor I shall name Doctor J. She was amazing. As I sat down, she walked in with my file and repeated everything my aunt had just said. She sent me off for tests and told me the results would be back in about 2 days. I nearly died when I paid the bill for that visit.
The tests came back clear. She said it was probably time to see a specialist in Vancouver. I burst into tears. With all the bills piling up, 2 and a half months of my trip gone with one day on the hill, and everyone giving me their two cents from “it’s just a virus” to “think positive and it will go away,” I was feeling more scared and alone then I had in my entire life. Doctor J. hugged me and said that I needed to look after me first and that it was OK to go home so I could have the support of my family and find out what was wrong.
Within 5 days I was home. The day after I arrived, I saw my aunt who said for certain it was carpel tunnel, but sent me to see a hand surgeon and a rheumatologist. With more extensive blood work I was finally diagnosed with seronegative Rheumatoid Arthritis. My blood doesn’t contain the Rheumatoid factor – no wonder the doctors had such a hard time figuring it out!
It’s been almost two years now since my first symptoms appeared, although some times it feels like yesterday. I’ve been on every drug combination from MTX to infusions and prednisone, but nothing really seems to be working. It’s hard too because I’m very sensitive to most of the drugs. From vomiting to dizziness, all the 1 in a million side effects get me. When I was on MXT my hair started to fall out – not something a 22 year old me was really expecting.
Some days it’s pretty hard to stay positive. As every RA warrior knows, it can be very tiring explaining to people why you’re not working, or why I cant drive or why I haven’t seen them in months. If I hear one more “but you look fantastic,” I’ll go insane! This site however has given me hope and guidance in some of my darker moments. I’ve learnt to count the small steps as major achievements – I can make a fist now and brush my own hair!
My family and friends keep me positive – especially my mother who is on sites, forums, reading books, talking to everyone she knows. She has more knowledge of RA than I do, no joke! She has been with me through every doctor’s appointment and always been there to let me vent my frustration. My dad makes sure I keep laughing and interested in life. He always has an adorable puppy photo to send me on my down days. He’s also been very generous with the foot and hand rubs, which are heaven.
This is Abbee’s onset of Rheumatoid disease story, in her own words.
One night late September 2011 pain in my feet woke me for no reason. I got out of bed and had no idea why I could barely walk out of the room. The pain eased in a few minutes. I decided I had planter fasciitis; my older sister has this condition. Due to poor health insurance, I researched online, and decided I knew what to do. My feet were my enemies, demanding that I learn everything possible about the best and most cost effective heating pads available. I hate to shop. I turned into a heating pad expert. By 4pm I would crave the heating pad, almost like a drug. October came with cold temperature, and my hands, wrists, shoulders, knees, and hips hurt. I am a private practice psychotherapist; once I lost my concentration in therapy sessions I had to go to the doctor.
I am 57yrs., 5’4″ and weighed 135lbs. I’ve been vegetarian since adolescence, rarely even got a cold. I love tennis, kayaking, hiking, running, exercise videos, x-country skiing, horseback riding, etc., and all that has stopped. This is so very new. I’m grateful I can walk my dogs. They are too! When I went the doctor the first time, I was upset, my blood pressure was high, I didn’t know how to explain myself. She looked at me like I was mentally unstable, said I should take anti-inflammatories, and come back if the pain persists. As I was walking out of her office, I noticed my feet were sore, she must have spent almost 10 minutes with me so I walked funny toward the door. She clearly looked at me as if I was faking. Seems like a clear symptom to me now, but no, I’m “anxious and have excruciating fatigue.” She did question osteoarthritis?
I changed PCP’s. I got tested for Lyme disease before I saw the new PCP, because I did have a tick bite during October. It was negative. After talking to a new PCP 2x I was referred to a rheumy (doctor), because my Rheumatoid factor was slightly high. She gave me Tramadol, which works well to keep me functioning. I am psychologically addicted, and I pray I can find ways to cope with the pain, continue to function without taking a stronger pain medication.
While I waited 3 months for my first rheumatologist appt. I went to a Michigan Medical Marijuana Compassion Club meeting which is a large group of people dealing with pain, care takers, lawyers and all that goes with the medical marijuana community. I was not one of the disabled people (yet) in the meeting, and I felt welcomed. I had learned the research being done for managing RA pain with medical marijuana comes from Spain, Italy and Israel (strong correlation between certain CBC and slowing RA symptoms over time). In most states that have legalized medical marijuana, “arthritis” is one disease almost always acceptable when getting a patient card. I learned how to become a medical marijuana patient in Michigan legally, and have a wonderful caretaker who is dedicated to keeping my pain manageable. I do not like smoking marijuana, thus I can take only two or three hits at the most. I do this on the weekends only to do house and yard work. My caretaker says if I smoked more I would not get as intoxicated. (He has not taken any money from me for the 10 months I’ve worked with him.) He now makes tincture, which is common for RA patients, which takes all pain away for 2 hours. I take that when I am home. I cannot use tincture at work as my practice is in Indiana where marijuana is illegal. In the future my caretaker can teach me to juice certain parts of the plant for the benefit of correct CBC’s. Since the drink is not heated, the THC is not intoxicating which is best for me. I imagine that will be more expensive, but my caretaker said he and his wife will teach me to grow the plant myself which is legal, and teach me how to juice it.
I finally get to the rheumy (doctor) who saw the high Rheumatoid factor, and convinced me I had a virus that will go away with no medication in one year. He did prescribe Plaquenil and the anti-inflammatory just in case I had RA. I got tested for the virus, and Rheumatoid factor again. I saw the rheumy (doctor) 8 weeks later, he read my chart for 4 minutes, and told me I do not have a virus, my Rheumatoid factor almost doubled in 90 days, looked at my hands and said I have RA. I told him I was concerned about the cold and he said, “You can get very feminine silky long underwear,” and talked about that way too long. I’m checking the married box or renting a man to go with in the future! (I’m gay.) The doctor, an older guy, said he wanted to see me in 6 weeks without prescribing blood work. I said I did not see a reason for returning so soon since I was continuing the Plaquenil, and scheduled in 3 months. He insisted I was “swollen” even though I had lost 10 lbs because of the medications, I thought I looked smaller??? BTW, I only get two doctor office visits a year that go toward the $5000.00 deductible, any additional visits are out of pocket. I am not able to afford this disease financially. My savings will come to an end, and I’m very worried. I have to work more because of the medical expenses, I own a business and I’m noticing I cannot work as hard like I use too. I take that one day at a time.
I see people at the compassion club who have no health insurance, are not on Medicaid or Medicare so do not go to a doctor. The marijuana allows them to suffer less, and their illness gets worse. I’m frightened that will be me if I cannot manage the medical people more effectively, and keep up with the insurance I do have. I try to save, and my savings will come to an end. I don’t have a partner or a supportive family. Sooner or later I might get Medicaid, but I don’t want to lose my house. I sense I need the better medication. I’m looking at what sort of help is out there for Enbrel. The older doctor said he would get me Enbrel when I need it, my sister said stay with him, but what will I have to tolerate to get that? I need to think about it, maybe I over reacted and he wasn’t weird? I don’t like “silky long underwear.” Oh my.
I made an appointment for a second opinion even though it comes straight out of my pocket. I have to find a doctor that I feel comfortable with, that will understand I cannot go to doctor appointments just to “talk” every six weeks. Since my blood tests have been part of my story, I would rather pay for blood work than see the doctor so often. My PCP is irritated because I am not cooperating. I do have a low-grade chronic sore throat, but I read that can happen with RA, and realize she cannot do anything. I still don’t need to see him so often. I’m running out of money like so many “RAwarriors”! I have an appt. in a few weeks for the second opinion and, I finally talked my PCP into ordering a RF test I can take with me to the new doctor. I purposely had the test done during a flare. Those are brutal and scary.
Thank you for being there for me, (and my adorable two shelter dogs who love me unconditionally). I will find my way through this part of my journey. I am grateful I found all the support and valuable information on the website.
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