Joni S

Joni S.

Real Profiles of Rheumatoid Arthritis
Photos © Joni S.

Name?

Joni S.

Age?

35

Location?

Guangzhou, China

How long have you lived with RA?

Over 17 years.

What advice would you give to someone who has just been diagnosed with RA?

Never give up hope! You may have to change the way you do things but they can still be done! Continue to do light exercise and keep moving. With RA if you don’t use it you sometimes lose it.

Do you use any mobility aids?

No.

How has living with RA helped to improve your life?

I’ve always felt a sense of urgency to find a way to do the things I want…now! I understand that my RA will probably only get worse so I try to really live life! I probably also have more compassion for other people and a greater amount of patience. I appreciate the little things and tell people how much they mean to me.

Do you have any visible signs of RA?

Yes. The joints in my right hand are quite deformed and it is very noticeable. Both wrists have nodules. My left arm no longer straightens all the way because of the deformity of my elbow. I walk with a limp on bad days.

Can you please describe some of your favorite coping strategies for living with RA?

I enjoy meditation and believe it helps tremendously in coping with the pain.

Can you please describe your current medical (traditional and alternative) treatments?

I currently live and work in China and I’m on TCM (Traditional Chinese Medicine). I love it! In the past I have been on Methotrexate, Enbrel, Daypro, and other NSAIDs. Currently the TCM is working well for me.

Is there anything else about yourself that you would like to share?

This is the first time I’ve ever shared my experience in a forum such as this. I’m more of a “get on with it” type of person and don’t like to dwell too much on my illness. In finding this website I’ve found great comfort in hearing about other people’s stories. I sometimes feel alone in this journey, though I have a great support system. It is encouraging to hear from others who will never give up the fight.

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The Healing Power Of Friends And Family

I’m almost a month away from my extended visit in the United States, and just a week away from wrapping up my time in Texas. I’ve done a *lot* during the past few weeks (much more than I expected), and while my rheumatoid arthritis has in general been treating me well, I still continue to have occasional dips in the road. This past Saturday in fact–the day of the 40th birthday part of one of my best friends (all the way back from my junior high years!), I had my most severe flare yet of this trip. On that day I ended up having to skip the midday picnic at Zilker Park here in Austin, but luckily the flare broke right around 5:00pm, just an hour and a half before the main festivities started.

And while I’ve attributed part of my recent uptick to the warmer weather, I think I’m at the point where the hot weather might actually be causing some issues. Just the night before, as I sat on the patio of a bar on Rainey Street chatting with my friends close to midnight, I couldn’t believe how hot it was!

I also realized just this past week that I’m also going into my fourth month of methotrexate, which might be another reason why I’ve been doing a little better than usual. (I’m still slightly amazed at how well I’ve been able to handle this medicine this second time around; it’s definitely been a night-and-day change, for the better, since the last time I was on MTX, and I attribute this to my rheumatologist’s suggestion to split my weekly dose into three smaller doses during a 24-hour period.)

Medicines or weather aside, however, I am certain that there is an aspect of this visit that is helping me in more ways than I could imagine: this has been being able to spend some quality time with friends and family whom I have not seen in years. From my mom and dad to high school and college friends, godparents, aunts, uncles, cousins, nieces, nephews, family friends, and my one surviving grandparent, it’s been a pleasure to catch up with all of these great people in my life. (And just like I’m less than halfway through my trip, I’m correspondingly just part way through the list of people who I plan on seeing.)

One thing that has pleasantly surprised me is the number of genuine inquiries about my health that I’ve received over the past month. I know that one of the common complaints from those of us who live with chronic illness is that others often don’t understand what we go through, or that they think we’re living with “just arthritis” (a statement that I do not use myself, as I believe that it undermines the severity of osteoarthritis), but this could not be further from the truth from what I’ve been personally experiencing. More so, I’ve seen a strong willingness from so many others to learn a little more about my disease, and to discuss the challenges that I–and others who live with this and similar diseases– encounter on a daily basis.

I’ve also been surrounded by people who ask me if there is anything they can do do to help, which has made me realize (not that I don’t receive this same help and consideration back home–I do) how nice it is just to be asked that question, even if I don’t need any help at that exact moment.

People may not always have a clear understanding about rheumatoid arthritis…but I really do believe that more often than not, they really do care, and are ready to help. It’s nice to be reminded of this, and it’s made my extended visit much less stressful and much more enjoyable.

In the weeks leading up to this trip, I more than once spoke to my physical therapist about how concerned I was that I would not have access to some of the regular treatments–including physical therapy–that I’ve grown accustomed to while I was here in the states. It’s funny, looking back, because she would immediately tell me that spending time with friends and family was going to do me a lot of good, and that even without my regular sessions of PT, she knew that I was going to be okay. I’m happy to share that she was right…more than I could have ever imagined!

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy

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Bloom Where You Are Planted: How Does That Make You Feel?

by Steph

For 2 consecutive therapy sessions with my psychologist, i turned up with acute flares in both wrists and knee respectively. When she saw the wrist splints and the knee support when i entered the consultation room, she asked me on both occasions, what the matter was. I told her as a matter-of-factly, that it was my RA flaring. Then she she asked me both times, something that no one else has ever asked me in my entire life.

“How does that make you feel?”

And that question made me think. It made me think a lot.

Read More: http://superfluousity.wordpress.com/2012/06/15/how-does-that-make-you-feel/

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Learning How Much I Can Do, Even As I Respect My Limits

“Argue for your limitations, and sure enough, they’re yours.” –Richard Bach

Earlier this week, I spent three days in New York City. And while I shared many fun photos on Facebook during my visit, I never really mentioned that the main purpose of this trip was business-related. When this trip was originally in its planning phase just a few weeks ago, I was in full preparation mode for my (then) upcoming international flight from South America to the United States. I was also dealing with so much pain and stiffness, that even the most simple movements were difficult to pull off.

For someone who has grown perfectly content with exploring the world through an Internet connection while laying on his back in bed most of the day, the thought of actual physical travel seemed a little overwhelming, even when I tried to focus on the excitement and happiness that surrounded this extended vacation in my home country (and my “escape” from winter in the Southern Hemisphere).

As I walked through the underground concourse at Penn Station Tuesday afternoon, I couldn’t help but feeling a sense of pride in what I had just accomplished. Yes, everyone involved in the project that I had just presented over the course of four hours was really happy with the final results…but that wasn’t what was forefront in my mind, as I marveled at the frenzied movements that surrounded me. What was really making me feel good was that I had actually flown to New York City on my own, traversed the city on my own (it’s a good thing I’m familiar with the city, having lived here during my college days), and sat upright for half a day as I presented to not only individuals who were in the room with me, but also to some people who were being teleconferenced in from around the world.

Just up to a month ago, I thought that committing to such a trip was madness. After all, up until that point, all of my efforts had been conducted while I laid on my bed with my laptop computer propped up on my chest, exactly as I am at this moment that I am typing the words of this blog post. (And exactly as I’ve been during almost all of the blog posts I’ve ever written in the past.) And while signs of my rheumatoid arthritis were definitely visible to others in the room, although I’m sure not everyone was aware of exactly what it was I was dealing with, in many regards the half-day meeting was just business as usual (even though, midway through, my left leg got a major cramp which required me to step away to the side of the room for a few minutes…but even that didn’t really seem to raise any eyebrows).

The night before I left for this recent visit to NYC, I took a long stroll down memory lane. Not only was my scenario quite familiar: bags packed by the door of the bedroom while I was at my parent’s house, ready to take the early morning flight to La Guardia Airport (as I had done so many times before two decades ago, when I was an undergraduate student at Columbia), but I was also dealing with unresolved feelings from my last visit to the city, many years ago. I still remember the excitement leading up to that week that I spent in midtown, as I planned to introduce my partner to the city that had played such a significant role in my life when I was an architecture student. I also remember the complete shock of having to spend almost the entire week in bed at the hotel (it must have been something I caught on the plane, or so I thought), as I struggled to figure out what was happening to my body.

Less than a month after that last visit to New York City, I was officially diagnosed with rheumatoid arthritis, ending a multiple year journey of trying to explain the aches, pains, and knees which functioned only on an intermittent basis.

New Year City and walking have always gone hand-in-hand for me, I’ve written previously how I used to just wander around the city aimlessly looking up at the buildings around me, and hours later–when my feet (back then) finally got tired–I would just go into the closest subway stop and make my way back to Morningside Heights. My recent three day visit was a complete success…not only because my professional engagement went better than I could have ever imagined…but also because during each day of my visit, I made a point to once again walk around the city, with my crutches in tow.

On Monday, I walked through the entire High Line, an abandoned elevated train track which has since been turned into an outdoor park. On Tuesday, even as my back started to cramp up from the cold drizzly weather, I walked around the tip of Manhattan and through the World Trade Center Memorials. And during the last few hours of my stay on Wednesday morning, while the sun finally began to make it’s first re-appearance in the previous few days, I walked through Central Park.

And just like that, I once again learned that even as I continue to respect my continually-fluctuating limits, I’m still able to do much more that I previously thought possible…and learning this lesson, firsthand, is priceless for my mind, body, and soul.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

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Kimberly Cooper

Kimberly Cooper

Real Profiles of Rheumatoid Arthritis
Photos © Kimberly Cooper

Name?

Kimberly Cooper

Age?

26

Location?

Fort Myers, Florida, United States

How long have you lived with RA?

I was diagnosed in March 2002 when I was 16, but spent about 1.5 years misdiagnosed as having Osteoarthritis.

What advice would you give to someone who has just been diagnosed with RA?

Don’t let the anger get to you. When I was first diagnosed I found myself in a mixture of confusion, anger and self loathing. I was angry at all the things I couldn’t do, and at people for being able to do simple things like walking and writing with ease.

Do you use any mobility aids?

I have a cane that I have to use, specifically with an ergonomic handle to ease on making my hand sore from lots of use.

How has living with RA helped to improve your life?

Having RA made me grow up and mature emotionally and mentally. While other high school kids were concerned about typical high school drama, I had to re-evaluate my entire life. It was a struggle, but I came out better for it, and with a greater respect for the joys that life has to offer!

Do you have any visible signs of RA?

My right elbow has completely fused, and as a result of the constant inflammation from when I was misdiagnosed, it caused either dislocation or mini-fractures that have warped my tibia and fibia (my friends call it my T-Rex arm). I hope to have a joint replacement and reconstructive surgery over this summer. I have large scars on my left foot because my left ankle had fused in a terrible position, so I had a surgery that essentially broke the joint and put pins in to ensure fusion so that my foot sits flat, called an Arthodesis. My surgeon also had to do an Midfoot Osteotomy to make my toes lie flat. 

Can you please describe some of your favorite coping strategies for living with RA?

I talk to my loved ones about my pain level and any troubles I’m having, so that they are informed and can assist me when needed. I also stop myself when I’m feeling self-loathing or pitying myself, and instead find ways to show myself that I’m still useful. I also temper my pride, because I know that I can be bull-headed and it causes me pain and distress when I refuse to accept help.

Can you please describe your current medical (traditional and alternative) treatments?

I am currently on Methotrexate for my RA, and I’ve altered my diet because I found that too much red meat added to my inflammation.

Is there anything else about yourself that you would like to share?

I love to knit, which I find helps keep my wrists mobile, and through the support and encouragement of a great teacher in High School, I have had the dream of being a teacher since age 17. I have had some medical roadblocks, but I’ve finally gotten back into college to be a high school teacher!

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