“Traditionally, the experience of serious illness has been approached in two ways: (1) a gloomy perspective of resignation, self-denial, and helplessness, or (2) a Pollyanna approach that denies altogether that there has been a real trauma. Both of these perspectives distort and disguise the reality of chronic illness.
The first perspective views the chronically ill person as a failure. This is the patient who does not respond to the ‘miracle’ of modern medicine, and somehow the lack of recovery is often perceived as the patient’s fault. This attitude of blame accounts for some of the worst psychological abuses of patients by health practitioners and caretakers, an attitude typified by the too-frequently heard statement, ‘Stop complaining. You simply must adjust.’ Unfortunately, the sick person may also adopt this punishing attitude toward himself or herself. Sadly, the word ‘adjust’ too often means ‘resign,’ ‘settle for less than a desirable existence,’ and ‘surrender.’ At its worst, ‘adjust’ is just another way of saying ‘You are now a nonperson without the right to experience strong passions, desires, or fierce and unyielding hope.’ All the anger and blame inherent in this attitude is misdirected: the patient rather than the disease becomes the target.
The Pollyanna approach is typified by — and fueled by — personal stories or testimonials of complete recovery from extreme illness or disabling conditions. These stories tug at the heartstrings and catch the fancy of all who read them. Besides creating false hope by overplaying the likelihood of complete recovery, these stories consistently underplay the sadness and feelings of worthlessness that are part of the legacy of any physical or emotional trauma.
Sometimes, it is useful in social situations to present yourself as a Pollyanna. When meeting new people and situations, it may be an advantage for you to let others think you have mastered your disease. The anxiety of other people is reduced by not having to confront illness. The danger is that this Pollyanna image may create a barrier between you and the people who can offer real help.
The resignation viewpoint holds little hope; the Pollyanna viewpoint holds little reality.”
I remember dealing with joint pain since I was about 8 years old. The pain, stiffness, and swelling progressed and turned worse about 3 and a half years ago and I was officially diagnosed by a Rheumatologist on January 6, 2011. I was diagnosed as having Seronegative Juvenile Rheumatoid Arthritis. My doctor warned me that if I did not get treated for RA immediately and suffer the side affects I would be unable to walk by age 30.
What advice would you give to someone who has just been diagnosed with RA?
Educate yourself. Research all your medications and other possible treatments out there. Surround yourself with supportive people. Even though nobody will ever understand what you’re going through, it means a lot to have someone care about you and help you with the most simplest tasks. Most importantly take your medications no matter how harsh the side effects are. You don’t have to go through this alone. Family and friends will always lend a helping hand or ear, they are as important as medication. They are the ones that will help you find faith and hope. You mean something to someone whether your healthy or not.
Do you use any mobility aids?
I use a wheelchair when I have to walk for a long time, when shopping I take advantage of the electric scooters they provide. I use compression gloves, and a leg brace. I’m so thankful my family helps me around with everything they can at home. I’m looking for a nice purple cane for when I need it.
How has living with RA helped to improve your life?
I don’t take my body for granted anymore, if it tells me to slow down, I make sure to slow down. It has helped me learn that I am surrounded by the most extraordinary and loving people anyone can ever ask for. They will stick with me through everything and do the best to help me through my struggles.
Do you have any visible signs of RA?
The tips of my index and middle fingers on both hands are turning outwards. My toes on my left foot are also damaged. You can’t really notice it unless I’m flaring and not able to walk properly or move my fingers.
Can you please describe some of your favorite coping strategies for living with RA?
I enjoy spending time with my family and boyfriend. My two brothers always seem to distract me or accompany me while I’m stuck in bed not able to move. My Mom and Dad are just the best, they always have open arms, and ears for me, and have helped me be more positive about my situation. When I need a laugh, or an outing my boyfriend always tries to convince me to go out and distract myself. Everyone has showed me that when I’m down, it’s better to get out of bed no matter how difficult it is and be distracted.
Can you please describe your current medical (traditional and alternative) treatments?
I am currently on Enbrel (thinking of switching to Remicade), Methotrexate, Plaquenil, Nortriptyline, Vicodin, Ibuprofen, Methocarbamol, Ambien, Ergocarciferol, Meclizine, Folic Acid, B-complex, and Calcium.
Is there anything else about yourself that you would like to share?
I surround myself by positive people. Those who love me are always around. This disease is too stressfull and painful to be around negativity. I’m as stubborn as they come. Even if I have no use of my hands or legs , I’m still up trying my best to do things on my own.
After more than a month, I finally made it back to the swimming pool this morning!
When I got sick a little over a month ago, with a bout of laryngitis that lasted almost two weeks, I knew exactly how everything was going to play out. First, I was going to stop going to the swimming pool in order to nurse my cold. While doing so was absolutely necessary, this would be a double whammy; my rheumatoid arthritis activity would increase both because of 1. my viral infection and 2. my lack of exercise (which has proven to be oh so helpful during the past year.)
So as my rheumatoid arthritis worsened over the past few weeks, I wasn’t really surprised at all. Throw in cold and drizzly weather than lingered for weeks after the official end of winter, and it was just the perfect mix for increased pain. And as the inflammation increased in every joint, the muscles and tendons started in on the fun as well. As my shoulders were particularly affected, the pain and inflammation quickly spread into my neck and shoulders, leading to a complete contracture of all of my back muscles.
(Which, if there is anything more painful than having rheumatoid arthritis active in every joint, it would be having your all of your back muscles try to continually shrink into something the size of a softball, all while rheumatoid arthritis is active in every joint.)
But I’m happy to share that this cycle is finally coming to an end. I’m once again standing in the corner of the swimming pool for an hour each morning, doing gentle range of motion and stretching/flexibility exercises. All of my joints, and my back, are happy campers. And to make it even better, the warm spring weather has finally arrived!
A lot of people have asked me how I am able to swim without making my rheumatoid arthritis worse. The fact of the matter is that I don’t actually swim, in the traditional sense. (Although I do occasionally dog paddle a few laps.) Instead, I stand at the deep end of the pool, and do gentle water exercises at my own pace. These exercises focus on warm-up, flexibility, range of motion, aerobics, and strength training. While I’ve invented some of my own variations, many of the exercises that I perform in the pool can be found in the following book:
Water Exercises for Rheumatoid Arthritis: The Effective Way to Reduce Pain and Inflammation While Increasing Flexibility and Mobility
Rheumatoid arthritis is an autoimmune disease affecting 2 million people. Symptoms differ from person to person but the most common symptoms of rheumatoid arthritis are inflamed joints, pain, stiffness of the joints, and a feeling of the joints being on fire.
Water Exercises for Rheumatoid Arthritis explains how water exercise helps relieve the pains and restrictions caused by rheumatoid arthritis. The book will explain how exercises, in general, and water exercise, in particular, are excellent ways to maintain flexibility and mobility and reduce the pain and swelling caused by rheumatoid arthritis.
Disclaimer: Review copy. I received one or more of the products or services mentioned above for free. I only recommend products or services that I personally use, and believe will be beneficial for readers of this blog.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
“When you have been diagnosed with a chronic illness it can be scary. One of the first things that many of us do is take to the ‘net to find out as much as we can about living with our illness. There are many, many (did I mention many?) message boards, twitter streams and blogs that are written by folks sharing their stories. Some are coping so very well and share their strategies. Others, not so much. Unfortunately, the not-so-much contingency is MUCH larger than the positive stories.”
During every extended flare, there comes a point where I just know that the worst has passed, and that better days are around the corner. This doesn’t mean that I’m suddenly pain free, or that my joints aren’t creaky and stiff. What it usually does mean is that I’m tired of the pain, and that I’m feeling emotionally overwhelmed. I feel like I’m once again being pushed closer to that edge, into that downward spiral where things will only get exponentially worse. Instead of accepting this as the inevitable outcome, however, I’ve learned–from experience–that the best reaction is to do the complete opposite. The best thing to do, at least in my case, is to start projecting wellness into my life…every moment that I can.
And the results are so good, that the only thing that I am left doubting is why I didn’t do so sooner. (But, I’ve also learned, there are periods when I need to let my rheumatoid arthritis run it’s course, before I step in and try to turn things around.)
I think know that this change took place last week, just as I was beginning to have some of my worst days of this recent extended flare. This past Tuesday, I went back to swimming pool (after not doing so for more than a month due to first a two-week cold, and then my flare) and was slightly disappointed when I was told that the new registration started not on that day, but a week later. But a funny thing happened…as I walked away, I felt little better, just knowing that I would soon be back in the water doing some gentle movements and stretches. I wasn’t exercising yet, but my body definitely got the message, and seemed to be happy.
And then came World Arthritis Day, and my personal challenge which I shared with my readers to reclaim one thing. As I read all of the comments that different people left, I was fascinated even more with the thought of turning the tide; that is, bringing things back into our lives as opposed to having arthritis take them away. And I mean this from a point of realism…I know that RA brings a lot of challenges and obstacles into daily life, but I’ve always said that my “can do” list will always be longer than my “can’t do” list. (It’s interesting, how the exact thing that seems to take something away can also be the exact same thing that seems to add something new.)
Towards the end of the week, as I’ve previously written, I went to the dentist’s office for a filling. Earlier today I went in for a dental cleaning. And while this is not nearly as enjoyable as something such as a spa experience, for me there is a lot to be gained from the knowledge that I am indeed taking care of my body. And like I wrote above, my body definitely hears this message. (As does my rheumatoid arthritis, which by this point is beginning to feel less in control.)
This past weekend, evidence of this turnaround was noticeable for everyone to see. I woke up Saturday, feeling a little achy…but less achy than usual. I noticed that the muscle contractures along my back, which had been there for more than two weeks, were gone. I went to visit a friend (my physical therapist, in fact) who was in the hospital, recovering from surgery. I went shopping to the local market, and purchased some fresh vegetables. I came home, and spent a few days cooking in the kitchen. That evening I went to sleep feeling good, and wondering what the next day would bring.
And when I woke up Sunday, feeling even better despite the fact that I had done much more than usual during the previous day (often referred to as “doing to much”), I cautiously wondered how long it would last…and before I knew it, Sunday evening arrived and I realized that it had in fact lasted all day. While living with rheumatoid arthritis, there is always something magical about have consecutive days of low to minimal pain. During the day, I took the dogs for a walk…and took one of my longest naps in a long time. (There is something even more magical about waking up, pain free, from an afternoon nap. Usually fatigue drags me to sleep, and the pain slaps me awake.)
And today? Well, I’ll keep it simple: Day 3! It’s 2:30 in the afternoon, and just around this time I’d usually be going into my second flare of the day. I’m also cooking (something usually unheard of on a weekday), as I’ve got a huge pot of homemade spaghetti sauce stewing away.
And tomorrow, I finally get to go back to the swimming pool!
[Someone kindly reminded me to not stop taking my medicines, now that I’m feeling better. I didn’t have the heart to tell her that I actually have not taken any medicines during the past seven months.]
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!