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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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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Kathryn

Kathryn

Real Profiles of Rheumatoid Arthritis
Photos © Kathryn

Name?

Kathryn

Age?

22

Location?

Boulder, Colorado, United States

How long have you lived with RA?

Only about 14 months. I developed symptoms in January 2011, and was formally diagnosed in August 2011.

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

Stay positive! Explore all your options and keep an open mind. Living with arthritis and chronic pain is tough, but allow yourself days to feel sad. Don’t let your medical team call all the shots – it’s your body and you definitely know it best. A good relationship with your doctor is key, so exercise your right to “shop” around for doctors, and find someone who really fits for you! Make sure you’re heard when you need to be; it’s okay to speak up! Don’t let your arthritis define who you are – work with your physical limitations, but don’t let them keep you from doing what you love.

Do you use any mobility aids?

I rely on my cane to help me walk, especially on the stairs, and I will sometimes wrap my swollen wrist in an Ace bandage to support it when I need to get some computer work done.

How has living with RA helped to improve your life?

Before my diagnosis, I struggled a lot with staying positive about my life. Now, I am incredibly positive most of the time! Life with arthritis can be pretty sad without constant positivity and a great attitude. I’m also learning a lot about how my body works and how I can work with it. I have a bunch of free time since I took a semester off of school, so I have used that time to learn a lot about autoimmune diseases and the best ways to take care of myself. After years of school and loads of stress, I’m finally learning to relax and do what’s best for me. I sleep in, take long naps, and read as many books as I’d like. I work from home, and develop to do lists that allow me some flexibility and time to relax. In middle and high school, I was a pretty decent artist, but dropped art in order to focus on my college studies. Now that I have time off, I’m getting back into my art and really loving it! I’ve also started collecting and planning some vegetarian and gluten free recipes; I hope to start my gluten free lifestyle soon!

My RA diagnosis has also made me a more compassionate person. I sympathize with other chronic pain sufferers, and am becoming active in a number of chronic pain circles.

Do you have any visible signs of RA?

I have rheumatoid nodules on my thumbs, a great deal of swelling in and around my right wrist and ankle, and swelling in my knees. My fingers are also frequently swollen. My gait is very visibly affected, as I rely heavily on my cane and tend to walk at a slow pace with stiff knees.

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

I have a wonderful support system in my family, friends, and especially my boyfriend DJ, who is my constant caretaker. I enjoy fresh flowers and try to have them in my home as often as possible, where they brighten up my day. I rely on my loved ones to help me through my rough days, but I’m not afraid to cry, rage, or just have a mopey day every once in awhile. Since my diagnosis, I have also started blogging as a way to express myself, release some stress, and cope with the day to day struggles I experience. I love reaching out to other RA and chronic pain sufferers and have made some great new friends through blogging (My blog is here.) When my wrists feel okay, I like to open the windows and sit in the sunlight to work with my sketchbook. As often as I can, I go out to visit my horse, Uno. I rescued him as an 8 month old, and he’s been mine ever since! He is such a sweetheart, and gives me extra cuddles when I’m feeling down.

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

I’m currently on a weekly injection of methotrexate as well as a weekly injection of Humira. I take Plaquenil twice daily and a folic acid supplement every day. My boyfriend and I make it a habit to go for short walks as often as possible, and I stretch and do a little yoga daily. I’ve recently started drinking a glass of 1/2 water and 1/2 organic tart cherry juice daily.

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

I hope to get back to school in the fall, and will complete my undergrad degree in Environmental Studies by next year. I’d like to get my masters degree in Environmental Public Policy. My ultimate goal is law school!

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Libby Schou-Kristensen

Libby Schou-Kristensen

Real Profiles of Rheumatoid Arthritis
Photos © Libby Schou-Kristensen

Name?

Libby Schou-Kristensen

Age?

52

Location?

Mtunzini, North Coast of Kwazulu-Natal, South Africa

How long have you lived with RA?

32 years.

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

Seek honesty and hope — I was diagnosed at age 20 and the grave way my Rheumatologist approached the disease frightened me. It would take me weeks to recover mentally from one visit and I always came away from his rooms in floods of tears. We fear the unknown so I would advise that you speak to someone who can be honest about the nature of the disease but who can also give you the hope that you need. With early diagnosis and correct treatment you will have more hope than I did 30 years ago because the treatment of RA has improved enormously with many more options today.

Take responsibility for your own health — Only you know the details of your lifestyle – your stress levels, what you eat and drink etc. Your Immune System has failed and that is a good starting point. Direct whatever energy you have to learning how to strengthen your Immune System. It is tempting to ‘give up’ when you have pain. I encourage you to not lose sight of your general health. You may not be able to change the past but you can change what you put in your mouth today! In your own mind try and assess what went wrong and then gear your lifestyle around regaining what you have lost. RA has taught me to be a fighter – in the good sense of the word, of course!

Live in the present — An ongoing condition is difficult to deal with and I spent the first 7 years looking back and longing for my ‘old’ life. Victory came for me when I began to accept that my life had changed and I started living in the present rather than the past. In hindsight I can see clearly that the past 30 years have equipped me for God’s purpose for my life today. Nothing in life is wasted if we will look for the good in every circumstance and allow it to change us and grow us as people. No-one likes to suffer but when you read all the RA testimonies you will realize that fruit grows in the valleys and not on the mountaintops!

Do you use any mobility aids?

Currently: My best mobility aid is my husband’s hand when we walk! I use a pool noodle to help me exercise in the pool. In the past: After hip surgeries I used gutter crutches (pressure is on the forearm and not the hands) and I have used a raised loo seat. For a 6 month period I had no right hip joint and was wheelchair bound.

How has living with RA helped to improve your life?

I became a Christian at the time of my diagnosis and it was the best decision of my life. RA brought me to the point where I understood my need of God. For 20 years my life had revolved around my physical body. I had neglected my spirit and soul. As humans we are firstly spiritual beings who possess a soul (our mind, will and emotions) and we live in a body. When I asked Jesus Christ to be my Saviour a miracle happened – I became alive spiritually to God. I have a real relationship with God, Jesus and the Holy Spirit. For this reason alone RA has been my greatest blessing.

Do you have any visible signs of RA?

I have scars from 13 surgeries – bilateral knee synovectomies, wrist & knuckle replacements, left shoulder replacement, 8 hip surgeries (1 on the left and 7 on the right), I have an uneven gait which my Pilates instructor is working on – he says that he is getting me ready for the catwalk! Most of my toes have fused naturally and my two thumbs have dropped. For 20 years I have been unable to lift my left arm due to weak muscles but I am making great progress and have started to swim unaided for the first time in 32 years. My left arm does not straighten properly (I think it is because of muscle weakness)

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

Physically: I eliminate frustration in my home as much as possible. We buy furniture that is easy for me to sit in. A high bed is essential and a raised loo seat for times of knee & hip pain. I cannot use a broom so I have bought an automated sweeper that charges at a plugpoint. I use dusters with handles, scrubbing brush on the end of a broom handle, I am blessed to have a dishwasher, I use long-handled tongs almost every day – to pick up cat bowls, reach into cupboards, to clean up after puppies! I use large plastic containers to keep smaller items in on the lower shelves of my kitchen cupboards (like tupperware). It is easier to keep tidy and when I want something I just pull out the whole container. An electric toothbrush helps sore hands and gives a professional clean. I stand my hairdryer handle in a heavy vase if drying my hair is too painful. This frees my hands to use the brush. A TV in the bedroom is a great distraction when tired and sore. We buy cutlery with thick handles for easy grip. I drive an automatic car. I use a foot spa regularly. I hang most of the washing on hangers and small items like socks & undies I hang on a round plastic hanger with pegs before I take it out to the washline. I tumbledry washing that does not need ironing and fold immediately. A taller teapot is easier to pour when full than a shorter one. My coffee and tea cannisters have easy flip lids.

Mentally/Emotionally: I struggle with loneliness as I am alone every day of the week. It helps me to structure my day as I like routine: housework, breakfast, exercise, tea break, computer for emails, lunch, rest (1-2hrs, read often), laptop to do writing, watch tv during breaks, prepare dinner. We have a collection of funny dvd’s and loads of Andre Rieu dvd’s which always lift my spirits.

Spiritually: I have an ipod with Christian music and cycle on my stationary exercise bicycle for 3 songs. I use the time to worship God and I am not so aware of my legs going round and the time factor! I have e-sword on my laptop with many different versions of the Bible as well as a good collection of health and Christian books. I write ‘Dear Neighbour’ letters for two publications. Writing has given me tremendous purpose in life and fulfilment. Focussing on your spirit and soul puts the body in perspective. You see the ‘bigger picture’. The body after all is temporal.

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

I have been on methotrexate since 1986, currently on 7 x 2.5mg tablets once a week, folic acid on 5 days of the week, coxflam (flexocam 15mg is the generic) 1 tablet daily, 2.5mg cortisone daily (trying to cut down).

Pilates (not group, personal trainer using a Reformer bed) and Biokinetics every second week as we have to travel an hour. Icepacks (Cryogel) always in freezer – wrap in thin dishtowel and apply for 20 minutes three times a day to inflamed joints. It increases circulation to the joints. Electric Heat pad/ microwave wheatbag for sore muscles or just for comfort when sore. Daily pool exercises (Sept –April) using pool noodle and Poolates (pilates principles in the pool!) I use 1,2 & 4 kg weights three times a week, a high density foam balance board (my balance was very poor) and a Pilates ball for squats against the wall. I supplement daily: multivitamin/multimineral, omega 3, Caltrate plus (calcium), 500mg powdered vitamin c, glucoasimine (2 x 500g daily). Vitamin B Complex when tired or stressed.

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

RA has taught me to be reflective about my life. Without reflection one year just rolls into the next and life becomes a blur. Taking the time to assess my life from every aspect – health, marriage, spiritual growth, relationships – has brought a greater awareness and thankfulness to God for my life. For the past 5 years I have adopted the American tradition of Thanksgiving and it has become a highlight of my year. I have discovered that when you have a better understanding of what is happening in your own life that you are better able to help others. For the past 15 years I have become more outward looking and my greatest joy comes from being able to help someone else. It began with the writing of my book, Seeing the Unseen, in 2009 and my DVD/CD 10 Life Lessons the following year. I have two more books ‘cooking’ and this year I added an RA blog called RA God’s Way to my website www.soulbooks.co.za.

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Stacie Casey

Stacie Casey

Real Profiles of Rheumatoid Arthritis
Photos © Stacie Casey

Name?

Stacie Casey

Age?

41

Location?

Prague, Oklahoma, United States

How long have you lived with RA?

I have lived with RA since I was diagnosed at the age of 22, so that is 19 years. Although, I think I had it several years before my diagnosis.

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

Take care of yourself! Often times others have no understanding of what is happening in our bodies and we have to be proactive with our health! Learn about your disease and find the best support you can. Keep moving as best you can and enjoy the good days.

Do you use any mobility aids?

I have used wrist splints in the past, but I’m able to go without them currently.

How has living with RA helped to improve your life?

I have developed a better sense of empathy for others. I have become more in tune with my body. I realize that I will soon have to give up teaching due to the degeneration in my spine, but I am super motivated to finish college! I graduate in May from grad school!

Do you have any visible signs of RA?

Yes, both hands have visible nodules in several knuckles. My right wrist is frozen and has very little range of motion. I have trouble with writing sometimes.

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

My family is very good to help me with anything I need, and I have found a great online community of people who are wonderful. My dog plays a big part too. When I am hurting or fatigued, it seems like he knows and he stays close.

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

I am currently taking Plaquenil, Methotrexate, Tramadol, and Folic Acid. The Methotrexate has been a life saver for me.

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

I would like to share my online hobby of t-shirt design! I design for Zazzle and Cafepress.

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