Friday, 15 Dec 2017

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What's it like to have RA - from those who do and don't

I was talking with a long-time patient and friend the other day and she asked, “What do you think it’s like to have RA?” and “How would you describe it to someone you just met?”

She’s had RA for nearly 20 years (since age 17 yrs.). During that time she’s had 4 children, 3 jobs, 2 husbands and a parakeet. Her bright smile, beguiling personality and firm sense of reality makes her an exceptional person. But she also uses her “disease” and communication skills to be a great patient and an effective patient educator.

Whenever I get a request for a patient who can share his/her “story” (TV, video, educational programs, doctors training), she’s one of several I volunteer. She is great on camera; meaning she quickly immerses you into her world, she makes you feel and understand as she tells her story. She can cry or laugh about the injustices and challenges of having chronic arthritis. I have great regard for people like her who can speak volumes (on a disease) by telling their “story”.

Back to the question, “what’s it like to have RA”?

I pondered this for quite a while. Although I don’t have RA, I think I can answer the question since I’ve heard the story, seen those it affectsand wrestled with the beast called RA at least 15,000 times in the last 32 years. The next paragraph is me trying to put my self, body and mind into one living with RA.

“What’s it like to have RA”?

RA is a parasite for which there is no cure. It’s an unwanted and undeserved squatter in my life and an invisible ball and chain. Some days the ball weighs me down so I cannot get out of bed. And when the weight is not so horrible, the rattling chain will always there to remind me what holds me back. No one but me sees and drags that ball or hears and feels that chain. I’ve tried to ignore it, even prayed for it to stop. It was the unrelenting bother led me to doctors, most of whom offered little hope or insight. I’m now tied to doctors and drugs that either do nothing help a little or, if I’m lucky, help a lot - 3 options over which I have no control. Three outcomes which seem to be dealt by specialists who supposedly know the most. Hence, my life is either lucky or aseries of random, unsuccessful outcomes. The disease, the body changes, the complications, or the side-effect ridden drugs often win out over the promise of a great response or cure. I’ve had some good times and bad times with my RA, but life, family and work go on, without allowances. Just when it seems I’ve got it figured out, RA reminds me I don’t and won’t. To find patients or doctors who can talk intelligently about RA is a welcomed relief. However, I prefer that those around me not know about me and my RA. I hope they don’t notice the changes in my hands or shoes or that I cannot wear my usual jewelry or that I prefer the elevator or that my purse is full of pills that I’d rather not explain. Having RA is an unwanted marriage for which there is no divorce or vacation.

Do you think RA affects your patients in this manner? I’ve asked several of my patients to read what I’ve written (above) and for them to answer the same question.  Here are their answers:

Melissa: I was diagnosed with RA 30 years ago (age 25) when there were three drugs available. I was told by a doc that the disease was "stunningly aggressive" (not comforting words). I'm no longer able to work long hours at, or travel for, an employer (which limits my income). I now earn 10% of my prior pay. I loved tennis, golf, bowling, and flag football. I'm unable to walk for exercise because of the damage to my feet. I do enjoy swimming and have joined a club. So once my new shoulder replacements have aged to four months I can pick it up again. My knee replacements are 13 and 15 years old and are doing quite well. And I'm looking forward to meeting my new hips someday – funny huh? I had big goals for myself and I've met very few of them. I try so hard not to feel sorry for myself and mostly I accomplish that. But I do get angry. I want to wear cute short dresses that show off my great legs, and high heeled sandals with my pretty feet. But the pretty legs and feet disappeared years ago (not funny). I can't fix this. No one can. I am losing the hope I have for growing old gracefully. But I have learned to be more patient and understanding with others who are going through a difficult time, who are visibly handicapped. It's a struggle to do that for myself. Lastly, when I arrive at the appointment feeling either: decent, angry, sad, or in pain. You do a great job of getting us to laugh, open up, or get the tears out while keeping it all about the RA. Doctors need to be ready for that.

Mary: I can manage the pain, the exhaustion, and side effects of the meds. The hard part is grief. I grieve for me, the adventurer that decided what she wanted and boldly went after it, no matter what. I trusted myself to handle whatever came. Now everything is limited by fear, diplomatically labelled “caution and preparation”. How many steps will I have to take if I go there? Will I be able to get enough sleep if I do that? Will there be someone to carry my things to the car? I worked hard to become the me I wanted to be, and I had become that. Now I’m gone.

Patricia: Due to disabling factors, the unpredictability of the disease results in a lifetime of disappointments. I miss the days when I could painlessly bound out of bed and embrace the day filled with blissful energy.

Rusty: Your version (of RA) is an interesting and accurate description of the incurable disease, the challenging diagnostic journey to seek cure, its mental and physical toll on the body. What it omits is the monetary impact. For me, having RA (I call it my romance with "old Arthur") for over 35 years has forced me to deal with the debilitating realities of almost constant pain (some body part always hurts, and since it moves around constantly, you never know where it will strike next). It has made me very pain tolerant, and I strive to not give in to it. Exercise, determination, and staying busy are coping enablers. Some days it is a struggle to walk to my car, yet I possibly could climb on my bicycle for a 20-mile ride or get in the swimming pool for water aerobics and feel better after doing it. RA has made me thankful for the Doctors responsible for the great care I have received, and I am in awe of the incredible support I get from my wife, family, church, employer, coworkers, and friends. They can see the effects of a flare in my eyes, demeanor, and my body movements, especially when I am forced to use my cane. My treatment has progressed from gold salt injections (which came with searing pain that brought tears to my eyes), through NSAIDs and DMARDs, and now biologics, prednisone and methotrexate. Despite my struggle with Arthur, the primary causes of minimal work absences have been caused by hospital-stay treatment of infections, which is a constant fear, or surgical repair and replacement of damaged joints. I am rarely sick with colds and flu. My relationship with Arthur has made me tough, caring, considerate, tolerant, determined to succeed, but as I age, more conservative in my life decisions. I am not ashamed that I have RA...I often use the phrase "I have RA, what's your problem?" No-one deserves the living hell RA induces, and no one should get rich on scary medicines that only minimize or mask damage to our bodies (or have serious complication tradeoffs) while most of us sufferers continue to "smolder" and slide downhill. I know you have research ongoing to expose the mysteries of this disease, and I am thankful for that. Although my past and present charitable contribution at work goes 100% to the Arthritis Foundation, I'm not fully sure that I understand what this organization is doing to help.

Richard: Sure, RA is a horrible disease, but it’s not the end of the world. I suspected arthritis at age 30. I knew it at age 34, just as I was starting a new business that required a lot of outdoor work in a mountainous area. There were days that I couldn’t mask the pain or hide the limp. That always brought unwelcome sympathy. After all, I was young, in shape and otherwise healthy with a wife and 3 young kids that needed an able provider. So I tried to deny and hide the disease. I would always go up and down stairs when no one was looking. I got up extra early so no one could see me walk like a very old man to the hot shower. I tried dangerous and ineffective “remedies” that did not work. Then in 2000 I found a Dr. and he introduced me to Enbrel. I was lucky because almost immediately I got my life back! I now take a shot once a month or so. The pain is still present but it’s minor. I’ve found that diet also makes a huge difference. Three months ago, I went on a 50 mile hiking trip through Yosemite, Zion National Park and rim-to-rim in the Grand Canyon. It hurt a little but I made it! My advice to others with RA is to never give up. Find a Rheumatologist that is well educated on all the latest developments in arthritis research. The answer to your prayers may be right around the corner.

Lisa: It depends on the stage you are in. When my RA was acute and my symptoms were excruciatingly painful and the damage swift. I used to compare it to looking a house lit up at night. I was the house and with every loss of function and every new painful development it was like watching those lights turn off one by one, room by room until there was only one burning dimly in the basement. It only took me three short years to go from rock climbing to a power wheel chair and that stage of the disease was frightening and painful and you feel hopeless and as if your life plan is being stolen from you. Once I was able to start controlling the disease and I had my joint replacements, etc., the disease became more hopeful and the lights in the house started to turn back on. I feel that one of the things Dr.’s needs to remember is that hope is what your patients are clinging to so you can’t take that away from them. It is a precious commodity. The next stage of the disease as you improve and start getting it under control. RA is like my second job, juggling medications, appointments, sleep, diet it’s a lot like you described in your article. It doesn’t quit and you don’t get vacations but you grow used to it and after time it is manageable. Life is not “normal” but there is a new “my normal”. Today I am closer to remission than I have ever been before and I feel that ‘Living with RA’ is also like a backhanded gift of sorts like inheriting a live-in boot camp sergeant. Yes, it is exhausting and draining emotionally and physically and some days I wish I could just turn it off. But I have learned more lessons in my life about endurance, and determination, and my own capacity to overcome hard things from RA than any other aspect of my life. It has been brutally difficult at times and yet living with RA is like being tutored from the school of hard knocks and being able to say I passed, I made the grade and I’m strong enough to fight another day.

Chiffon: RA is the dark cloud that descends when it wants. That heavy sinking weight that brings with it the pain and fatigue like a sack of flour on your whole being. It has forced me to watch the slow degradation of my once pretty hands (and feet). I no longer wear rings or bracelets that point out the bony protrusions. I wear bigger shoes with heavy socks and pre- medicate before a strenuous activity so RA won’t be the blame if I stop. And yes, it’s kept hidden unless I’m asked why my bones look funny. It also took my femininity away and made me harder, and hard to live with. I have been forced to live with this disease, despite how it conjures forth anger for taking away my strength, shrinking my once strong muscles that could open that stuck door, lift that kettlebell and sadly make a heck of a punch in a defensive fist if needed. It’s a thief. It drags like a wet mop behind you, ruins your mood from fatigue, takes away wishes. The side effects can lead to other diseases, hovering nearby like a grim reaper ready when you are not looking, as if RA alone is not enough. Grim is always waiting because he knows the long term consequences and side effects. He also knows when you will finally wear out from the fight or the treatment stops. Lastly, 20 years ago there were really no choices to slow it or control it. I feared a wheelchair loomed in my future to which I sadly, changed my course in life out of fear of its possibility. But, I, like many prayed to any deity I saw, silently for relief. Even Buddha in a foreign country to take it away too. I am not a Buddhist, but there is nothing to lose when you already lost. Having it especially in early days with little options, it made me angry, and that fueled my workouts, crying silently but hammering away literally till the joints would bleed. I chose not to be defeated by it; the chronic pain, visual deformities, or potential for other side effects. Damn you RA I say. Damn you and your friend the reaper. Thieves are not wanted here.

Disclosures: 
The author has no conflicts of interest to disclose related to this subject
Dr. Cush is the Director of Clinical Rheumatology at the Baylor Research Institute and a Professor of Medicine and Rheumatology at Baylor University Medical Center in Dallas, TX. He is the Executive Editor of RheumNow.com and Co-Editor of the online textbook RheumaKnowledgy.com. Dr. Cush's research and interests include novel drug development, rheumatoid arthritis, spondyloarthritis, drug safety, pregnancy and Still's disease/autoinflammatory syndromes. He has published over 140 articles and 2 books in rheumatology.
He can be followed on twitter: @RheumNow.

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