I’m tired of having only negative things to say when I post to RheumaBlog. After all, there are lots of positive things that happen in my life every day; it’s not all doom and gloom. But the fact is that I wake up each morning stiff as a corpse. The first hour of each day aches, literally; the dose of painkiller that I took before retiring the night before has worn off completely. The new, first-thing-in-the-morning dose takes about an hour to work. My creaky joints loosen up some. Even then, the pain isn’t gone. The drug dulls it and sends it into the background, but it’s still there, mocking me, reminding me each time I move that I have rheumatoid arthritis and its co-morbidity, trochanteric bursitis, and that the many therapeutic drugs I take to keep it under control don’t seem to work very well.
Real Profiles of Rheumatoid ArthritisPhotos © Rachel Marie
Grand Rapids, Michigan, United States
How long have you lived with RA?
I was diagnosed at the age of 7; so almost 20 years now!
What advice would you give to someone who has just been diagnosed with RA?
I am a “take charge” kind of girl; so take a deep breath; look at yourself in the mirror and realize that you look exactly the same as you did an hour ago, a day ago, a week ago, before you were diagnosed. Make some phone calls; talk to doctors, talk to patients; it’ll help you get some perspective on what to expect.
Do you use any mobility aids?
I do not.
How has living with RA helped to improve your life?
I have met so many great people whom I never would have met. Having RA has pushed me out of my comfort zone to attend functions, or to get up and speak in front of strangers to help spread awareness.
Do you have any visible signs of RA?
I don’t have a huge range of motion in my neck; I can’t straighten all of my fingers all of the way. Is fatigue a sign? I’d say yes; I get told I look tired a lot.
Can you please describe some of your favorite coping strategies for living with RA?
I have some of the greatest friends and family! Sometimes having a good cry can work wonders. Other times taking a night to myself, to realize how lucky I am to be where I am helps me feel better the next day.
Can you please describe your current medical (traditional and alternative) treatments?
I take Celebrex and Folic Acid everyday. I take 8 tablets of Methotrexate one day a week, every 7 weeks I have a 2 hour infusion of Remicade.
Is there anything else about yourself that you would like to share?
Getting involved with the Arthritis Foundation has changed my life.I have learned so much about the disease and it has helped me feel like I am contributing to find a cure. I always try to speak with parents of kids who have been recently diagnosed; my parents always made decisions with me, never for me. Feeling like I had some sort of a say made me feel better when I felt I couldn’t control my own body.
Physiotherapists have been banned from touching their patients in a cost-cutting move described as “barmy” by experts.
Physiotherapists have been banned from touching their patients in a cost-cutting move described as “barmy” by experts.
Patients referred to physiotherapists for treatment in Nottingham will no longer receive hands-on treatment – but will be directed to websites where they can learn exercises for themselves.
Patients in Rushcliffe are given “advice and guidance” and directed to websites and information leaflets where they can learn exercises for themselves.
Phil Gray, chief executive of the Chartered Society of Physiotherapy, said: “They seem to have invented a new form of physiotherapy that no one has heard of – do-not-touch physiotherapy,”
“Physiotherapists can’t actually physically touch you at all under this system. It is deeply unscientific.”
(April 7, 2012) – Show Us Your Hands! is pleased to announce that its inflammatory arthritis community collage has grown to more than one thousand photos. This interactive collage includes the hands of individuals who live with many different types of inflammatory arthritis, and can be viewed online at showusyourhands.org/interactive-collage/. To commemorate this milestone, Show Us Your Hands! plans to release a new 1000 Hands Poster this coming May as part of Arthritis Awareness Month.
The one-thousandth photo was submitted by Kathy Winkelmann of Rochester Hills, Michigan. Kathy was diagnosed with rheumatoid arthritis in December 2011. “I’m just learning how to come to terms with it and not let it take over my life,” she says. Kathy will receive a complimentary copy of the upcoming 1000 Hands Poster, in recognition of the fact her hand was officially the one-thousandth photo that was submitted to the community collage.
The interactive collage debuted in December 2011. People of all ages from around the world are represented in this community project, and new photos continue to be added to on a regular basis. This community collage project serves not only as symbol of the wonderfully supportive inflammatory arthritis community that continues to grow and connect online, but also acts as a reminder that people who live with these diseases should be proud of, and not ashamed of, their inflammatory arthritis hands.
“When I first came up with the idea for this collage, I thought it would include, at most, one or two hundred photos. I’m so excited to see that the collage has expanded to more than a thousand photos in such a short period of time,” says Rheumatoid Arthritis Guy, creator and one of the founding directors of Show Us Your Hands! “I can’t wait to see how much more our proud community of hands will continue to grow into the future!”
Autoimmune diseases occur when a body’s immune system mistakenly attacks healthy tissue. In the case of inflammatory arthritis a person’s joints are frequently attacked, resulting in chronic pain and debilitating inflammation. The most common inflammatory arthritis diseases are Ankylosing Spondylitis, Juvenile Idiopathic Arthritis, Mixed Connective Tissue Disease, Psoriatic Arthritis, Reactive Arthritis, Rheumatoid Arthritis, Scleroderma, Sjogren’s Syndrome, Still’s Disease, and Systemic Lupus Erythematosus.
Show Us Your Hands! is an international awareness movement which serves to unite and inspire the inflammatory arthritis community. For more information, please visit www.showusyourhands.org. Show Us Your Hands! can also be found on Facebook and Twitter.
I used to think that accepting the reality of my rheumatoid arthritis meant that I would be giving in to this disease.
As long as I grabbed on to the life that I wanted (thus avoiding what was obviously becoming the life that I had), I figured that I would be okay. For a while this actually seemed to work, and I thought I was happy. But as my RA continued to progress, I became more miserable, and less able to cope with what was happening to both my body and my mind.
The idea of failure has such a negative connotation, that I think most of us rarely want to admit that it plays any role in our lives. I think that sometimes it’s easy to forget that we often get to the place we need to be, as a result of having visited in the past many places that were not good for us. For me, this has definitely been the case when it comes to my ability to cope with my illness, and I have no shame in admitting as much.
You see, for me the mistake was–even though I didn’t see it at the time–basing all of my coping mechanisms on one false premise, which was the thought that the pain would actually, one day, go away. Everything I did, and everything I thought, fell under the hope that just as quickly as this disease entered my life, it would just as quickly exit. And if today wasn’t the day, then tomorrow definitely would be.
And looking back, what I did, for years on end, was to inevitably set myself up for failure, each and every day. When I woke up, and the pain was still there, I would feel like I had lost yet another battle…and it got to the point where I started to wonder that if each new day was immediately going to be chalked up as a loss, what was the point of living this type of life?
My biggest breakthrough into the world of acceptance came on a day, around a year and a half ago, that I still remember quite clearly. I was in one of my worst extended flares to date. I could barely stand up, much less move. I had started resorting to peeing in a cup. I was using what little physical strength and energy I had to go see my rheumatologist, or to go to the local clinic for yet another anti-inflammatory injection. And as I got through each and every minute, there was one thought that permanently remained in my head:
Things have to get better tomorrow.
(Once again, setting myself up for failure.)
One day, though, something clicked. Instead of constantly telling myself that things had to get better the following day, I found myself asking: what if they don’t? And instead of feeling frightened out of my wits by such a possibility, I told myself that I needed to start preparing myself–physically and emotionally–should this be the case.
And this was the exact moment when I entered into my own Alice-in-Wonderland-like wormhole, and passed from the land of denial into the world of reality.
I’ve stayed here ever since, and it’s been absolutely wonderful. It hasn’t slowed the progression of my disease, but it has allowed me to cope better than I previously ever could. A while back I shared on a Facebook status that for me, a positive attitude doesn’t mean that I hope the pain will go away; instead it means that I hope that I will be able to cope with the pain even better. My life, and my outlook, have improved drastically since I adopted this philosophy.
I have not lost hope, and I have not given in to my disease. What I have done, however, is base my thoughts and my actions upon a premise that does not set me up for failure with each new day. I no longer wonder if the pain will be gone when I wake up in the morning. I *know* it will be there, and I’m okay with this. Most importantly, I’m prepared for this. (And on those rare days when I wake up not feeling pain, I appreciate it for the beautiful–albeit temporary–gift that this is.)
Many people write to me, to say that they wish they were able to cope with living with chronic illness as well as I seem to be able to do, and that they want to be able to have the same positive attitude that I express in many of my posts. But, they go on to share, their lives seem to be full of so many different failures, that they don’t know what to do. They don’t know how to keep moving forward.
I write these words today to share the following: were in not for the fact that I experienced so many failures myself, when it came to coping with the continual daily challenges of living with chronic pain and disability, I don’t think I would have ever been able to find the comfortable and peaceful spot where I currently am; a place that is still marked by pain and disability, but that is also full of reality, happiness, acceptance, and hope.
Each time I receive one of these messages, like those that I describe above, I secretly smile to myself. I smile, not because I know that someone out there is struggling, but because I know that soon there will be one more person who passes through this wormhole, into this “alternate” reality of acceptance that I have only recently discovered myself: a world where our diseases no longer hold us back, but only continue to push us forward, into a brighter and better future!
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
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