Libby Schou-Kristensen

Libby Schou-Kristensen

RA Guy Real Profiles of RA 5 Comments

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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.

Stacie Casey

Stacie Casey

RA Guy Real Profiles of RA 1 Comment

Real Profile Casey Stacie

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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.

Rosemary King

Rosemary King

RA Guy Real Profiles of RA 2 Comments

Real Profile Rosemary King

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Name?

Rosemary King

Age?

24

Location?

Norwich, England

How long have you lived with RA?

I was diagnosed at the age of 21, three years December 2011.

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

The first time I was told I had RA was a major shock to me, I thought I was too young and I knew so little about it. Find out as much info as possible and ask lots of questions.

Do you use any mobility aids?

I mainly use the jar opener things and grip aids.

How has living with RA helped to improve your life?

This question really made me think, I’ve had a tough time with RA, I guess its made me change my life style a bit, I eat a lot healthier now then I used to, I don’t drink or smoke.

Do you have any visible signs of RA?

The main visible signs of my RA are my hands, they are constantly in flare mode and are getting more deformed as the years go by. My knees, shoulders and ankles also flare up often.

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

I watch a lot of comedy and lighten situations with a joke, I detach myself from things sometimes, music helps me to zone out of life.

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

I often look at my medications and remember back to a time when I didn’t even take pain killers for a headache, I had a pretty high pain threshold until the RA, now it’s different. Currently I’m on biologics- Rituximab (on infliximab before), also take methotrexate, alendronic acid, folic acid, prednisolone, sulfasalazine, lansoprazole and domperidone.

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

RA has changed every aspect of my life, I found it really difficult to cope in the early days before the diagnosis, I was so ill, a physical and emotional wreck, I didn’t know what was wrong with me, I was in so much pain and lost so much weight, I went down to 6 and a half stone and was totally unable to cope. What made it worse was that I was in my final year of an arts degree, miles away from home, trying to look after myself whilst having to cope with the stress of a tonne of work, deadlines and putting together an exhibition. Those days were hell for me and when I think back I’m amazed I managed to finish university and get my degree, I was so close to giving up but what kept me going was my amazing boyfriend, the love and support of my fantastic parents and the expert care of the Rheumatology Team at the norfolk and norwich hospital. I love England and I love the NHS, it is the best care in the world and means I don’t have to worry about the cost of my RA. The drugs although many, allow me to work full time and give me hope for the future, my goal is to go freelance with my photography and be able to work for myself.

Kacee Nicole Andujar

Kacee Nicole Andujar

RA Guy Real Profiles of RA 3 Comments

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Photos © Kacee Nicole Andujar

Name?

Kacee Nicole Andujar

Age?

12

Location?

Hendersonville, Tennessee, United States

How long have you lived with RA?

Since I was 16 months old.

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

Never give up!

Do you use any mobility aids?

Not anymore, when I was small I had to use shoe supports and knee braces.

How has living with RA helped to improve your life?

It has made me stronger, more determined to reach my goals.

Do you have any visible signs of RA?

I have one thumb that is longer than the other. One foot is bigger than the other. One leg is slightly longer than the other. Still some signs of swelling in my knees they are larger than a normal childs.

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

I like to draw, read or anything to take my mind off my aches and pains. Sometimes, I just curl up with my mom.

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

I have no medical treatments at this time, as a child my body would not process the drugs so I could not take anything. Hot baths help a lot.

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

I want to grow up and be a singer, maybe you will see me on “American Idol” at some point.

Rachel Marie

Rachel Marie

RA Guy Real Profiles of RA 3 Comments

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Photos © Rachel Marie

Name?

Rachel Marie

Age?

26

Location?

Grand Rapids, Michigan, United States

How long have you lived with RA?

I was diagnosed at the age of 7; so almost 20 years now!

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

I am a “take charge” kind of girl; so take a deep breath; look at yourself in the mirror and realize that you look exactly the same as you did an hour ago, a day ago, a week ago, before you were diagnosed. Make some phone calls; talk to doctors, talk to patients; it’ll help you get some perspective on what to expect.

Do you use any mobility aids?

I do not.

How has living with RA helped to improve your life?

I have met so many great people whom I never would have met.  Having RA has pushed me out of my comfort zone to attend functions, or to get up and speak in front of strangers to help spread awareness.

Do you have any visible signs of RA?

I don’t have a huge range of motion in my neck; I can’t straighten all of my fingers all of the way. Is fatigue a sign? I’d say yes; I get told I look tired a lot.

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

I have some of the greatest friends and family! Sometimes having a good cry can work wonders. Other times taking a night to myself, to realize how lucky I am to be where I am helps me feel better the next day.

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

I take Celebrex and Folic Acid everyday. I take 8 tablets of Methotrexate one day a week, every 7 weeks I have a 2 hour infusion of Remicade.

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

Getting involved with the Arthritis Foundation has changed my life.I have learned so much about the disease and it has helped me feel like I am contributing to find a cure. I always try to speak with parents of kids who have been recently diagnosed; my parents always made decisions with me, never for me. Feeling like I had some sort of a say made me feel better when I felt I couldn’t control my own body.