Real Profiles of Rheumatoid ArthritisPhotos © Holly Dennett
How long have you lived with RA?
I think I had been living with RA a lot longer then I think I have, I was diagnosed when I was 18, but I simply went to the doctors for a fat joint on my little finger which I had for a few years and wasn’t going down. I used to get really really bad ‘growing pains’ in my legs when I was a child. I also have Raynaud’s phenomenon, and possible lupus. Which mean I have very cold hands and feet which I was told can come with RA.
What advice would you give to someone who has just been diagnosed with RA?
At the moment I’m unsure because I still feel I need some advice myself to be honest. I would say be honest and realistic with your body and don’t push it too much. I have a bad habit of if I’m ill with a flare up or any illness the minute I am feeling better I try to go back to normal like nothing has happened and I don’t give my body enough time to fully recover and end up worse in the long run. Now I have learnt that I have to be slightly more sensible with my resting and looking after myself. For example if I know I’m going clubbing on a Saturday and will be drinking and wearing high heels then Sunday all I have to do on Sunday to purely rest my body with my legs up, otherwise it’s a down wards spiral of tiredness, sleeping then even more stiffness and pain than normal.
Do you use any mobility aids?
I need to change my car into an automatic as I can’t drive a manual anymore due to the pain in my knees from changing gear. But normally No, but when I have a flair up I do need a walking stick or something to help me walk.
How has living with RA helped to improve your life?
That’s a very hard question, I personally can’t think of anything that it has helped me with; it does slow me down and irritates me on a daily basis. However I don’t take my walking and life for granted anymore and I appreciate ‘good days’ so much, because I know tomorrow I might be a ‘bad day’ and I won’t not be able to walk or get out of bed. I also have found out who my real friends are, I know who is truly there for me when I need it most.
Do you have any visible signs of RA?
I have swelling on my fingers which can be red and people say I ‘carry myself’ when I walk, due to stiffness and pain. When I’m in a flare up it is very visible because I am unable to walk at all or move ‘normally’ as it affects most of my body, feet, knees, hips and back etc..
Can you please describe some of your favorite coping strategies for living with RA?
Well this is interesting because recently I haven’t had any problem with coping with it emotionally until a few months ago when I started my current huge flare. Normally when I have a flare I do get very depressed, the only thing that does get me though it is that I know when I’m out of the flare I do automatically feel back to myself again. For the past few months I have found it harder to stay so positive, as my RA is gradually getting worse. I am a student nurse which I am finding it very hard to learn about the condition from a nurses few instead of a patients few. I do find shopping helps a lot!!!!!!!! (it is not the best form of coping for my bank balance) For me personally if I feel good on the outside with buying nice clothes, doing my hair, painting my nails, it covers up and takes me away from the feelings, the pain and the stiffness that is going on inside my body and makes me feel better about my inside self. I try and write everything down, write a dairy most days so I can let all my feeling out because they build up inside and then I explode. Also never stress over anything because as soon as I do, that causes a flare up and then things will get worse, so I try and stay as relaxed as possible.
Can you please describe your current medical (traditional and alternative) treatments?
I’m taking hydroxychloroquine and a large dose of vitmin D, which is helping me at the moment. I was on regular prednisolone and ibuprofen for pain, but a few weeks ago it caused a hole in my stomach wall, so I am unable to take them anymore. So now I’m on other medications for the hole in my stomach.
I also don’t eat Dairy or eggs any more, for a year I was able to control my RA with my diet which was really good. I now know instantly that I have eaten dairy, in about 30 mins or so I can feel the inflammation building under my knees. However at the moment I need the medication as well as my symptoms have been getting worse.
Is there anything else about yourself that you would like to share?
Only that I do try to live my life to the full when I’m on a ‘good day’ because you never know when it is going to be a ‘bad day’. I still wear my mega high heels, even though they are going to make my knees hurt. But in my few there might be a time in my life later on that I might not be able to walk at all. I would like to talk to any one of a similar age and get some advice with coping emotionally or anything. My Facebook page is www.facebook.com/holly.dennett.
“Suffering from chronic pain or illness—or, as is often the case, both—can feel like a full-time job. One reason for this is that we must constantly assess and evaluate if we’re managing our health and our relationships as skillfully as possible. This ongoing decision making makes up a major part of the workload in this full-time job—a position we certainly never applied for!
Here are five tough choices we continually face. There aren’t easy answers to the issues they raise: that’s why they’re tough choices.”
Toni Bernhard is the author of the award-winning How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers. Her new book, How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow, will be published in September 2013.
It’s been a rough week, but somehow I am still moving forward.
Even though the list of things that aren’t working quite like I might want them to continues to grow (my hips are locking up, my eyes constantly burn, my left knee is grinding, my hands are increasingly being pulled out of shape, my thigh muscles are a mess, and the list goes on and on), I find myself turning to what has helped me so much during previous crisis moments: focus on what is going right in my life. And just as easily, I find myself building another mental list; a list that motivates me to keep moving forward, no matter what is happening to my body.
For example, I have lost five pounds in the past two weeks. I continue to do fifteen minutes of gentle stretching and range-of-motion exercises, exercises that have already shown great results when it comes to problems in my shoulders, upper arms, and back. I am surrounded by supportive and caring people, both in my real life and in my online activities. I, along with a great team of directors, are in the midst of strategic planning for Show Us Your Hands!…and given the opportunity and the time, I could continue to add an infinite number of items to this list of things that are going right.
That said, dealing with a flare of this nature is still very challenging; so much so that even though I have no doubt that I will continue to get through each new day, I am feeling worn down. Like those of us who live with this know all too well, there is a certain point where no amount of rest will fully re-charge our batteries…we just have to learn to continue to make the best with what we’re given at any moment in time, whether is comes to the amount of energy we have or how much we are (or are not) able to move our bodies.
Yesterday afternoon, I started feeling somewhat startled. Over the past couple of years I’m never had much of an issue when it comes to connecting to the inspiration that resides within me. Now that I continue to face challenges that are both known (in what they are) and unknown (in their severity), I’m starting to find the exact opposite to be true…and while I know I need to allow myself the opportunity to experience this wide range of emotions, I also know that I cannot allow myself to enter into a backward slide towards the darkness, and towards the depression.
I found myself returning to my trusty three-point plan; a plan whose power belies its simplicity.
1. Accept everything exactly as it is right now.
2. Figure out where I want to be, and what I want to change.
3. Do *everything* possible within my control to get there.
And yesterday, at least, step three meant finding an outside story of support and inspiration that I could use to re-build some of those internal feeling that were starting to slip away.
One friend recommended Flying Without Wings: Personal Reflections on Being Disabled by Arnold Beisser. (Unfortunately this book is only available in print format, which means it will be some time before I can get my hands on it.) Another friend recommended Strong at the Broken Places: Voices of Illness, a Chorus of Hope by Richard M. Cohen. My search soon led me to another book by Mr. Cohen, Blindsided: Lifting a Life Above Illness: A Reluctant Memoir. I decided I would start there. (As an added bonus, this book is available in audio format!)
One of the most frequently received comments that I receive from readers of this blog is this: “When I read your words it feels like I am reading my own thoughts.” As I started listening to “Blindsided” yesterday afternoon, while sitting in the back of a taxi on my way to physical therapy, I could not help from thinking the exact same thing.
“I am not just a collection of muscles and nerves, the wiring that has short-circuited my dreams. Who I am, my very identity rests in my head. It is from that fortress, my command post, that my being takes shape. Citizens of sickness, those who suffer from their own assaults on body and spirit, know disappointment. Ours is a common siege. The battle to control our heads is every bit as important as combating the attacks on our bodies.
The psychological war with illness is fought on two fronts, on the battlefield of the mind and in the depths of the heart. Emotional strength must be learned. I am a better person for that struggle. Attitude is a weapon of choice, endlessly worked. The positive impulse must struggle to survive in a troubled mind. I skirmish with myself, in an effort to shield my eyes from the harsh sight of the diminished person I believe I see looking from the mirror.
Self-pity is poison. There is no time. I need a future and refuse to become a victim. Too often we become oblivious to our own prisons, taking the bars and high walls for granted. Sometimes we construct them ourselves, and the barbed wire goes up even higher. Too many of the limitations placed on us are an extension of our own timidity.”
In light of a disconcerting trend that I have noticed over the past few months, where some individuals feel the need to attack others (including myself) for choosing coping methods that are different from the ones they themselves use–an attitude that was clearly demonstrated in a message that I shared on my Facebook page last night–I found the next paragraph to be particularly poignant.
“…this book is not about sickness, but about the search for emotional health. This is not the answer, but only an answer. Coping is a personal art. There is no element of science in coping, no formula or objective standard for measuring proficiency. Coping is measured against only how you want to live and what you think works.”
Here’s hoping for the best of success for each and every one of us, when it comes to coping with the challenges that chronic illnesses introduces into our lives. Here’s hoping that we all continue to learn and grow, not only as individuals, but also as the wonderfully supportive community that we are.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
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Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
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