Rosemary King

Rosemary King

Real Profiles of Rheumatoid Arthritis
Photos © Rosemary King

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.

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Kacee Nicole Andujar

Kacee Nicole Andujar

Real Profiles of Rheumatoid Arthritis
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.

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Rachel Marie

Rachel Marie

Real Profiles of Rheumatoid Arthritis
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.

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Charlotte Stacey

Charlotte Stacey

Real Profiles of Rheumatoid Arthritis
Photos © Charlotte Stacey

Name?

Charlotte Stacey

Age?

17 years old

Location?

Bath, United Kingdom

How long have you lived with RA?

Diagnosed July 26th 2011.

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

Learn as much as possible about your condition, talk to others with it, remember you’re not alone! Keep positive and listen to the specialists but don’t forget you know your body better than anyone else.

Do you use any mobility aids?

I have night splints and working splints, but I don’t really use them that often, I also have finger splints which I use everyday.. Oh and my mum!

How has living with RA helped to improve your life?

It’s allowed me to realise the true values of life! It’s shown me that I have the most supportive family and friends and as cliché as it sounds, it does make you stronger. You don’t know how much pain you’re going to be in one day from the next, so you must live each day as it comes and do everything you wish. Also on a ‘good day’ you feel on top of the world, life really does become more precious.

Do you have any visible signs of RA?

Not really, sometimes rashes and the swelling during flare ups. Oh how we all love sausage fingers and the occasional limp if my knee or hip are playing up!

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

Let it out, I used to hold it all in because I thought it was weak if I didn’t, who was I kidding? Moan, cry, scream! Being sarcastic and using humour to get through it is also a really good way! It’s also really good to have someone you can trust to talk to when you’re having a rough time. If not Twitter is such a good place to rant, I prefer moaning on twitter as it means less moaning in real life!

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

Methotrexate injection (with folic acid), Enbrel, Prednisolone, Naproxen, Paracetemol and Tramadol. Hydrotherapy and Physiotherapy.

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

When I was suffering from RA but hadn’t yet been diagnosed, I put the pain down to other things and carried on with life as normal. I got through my GCSE’s with good grades, even though I was barely able to hold a pen, I took part in my sports classes like before and I still attended my boxing sessions 3 times a week and riding lessons on the weekend. I even managed to uphold my social life. Obviously as time progressed my RA got more severe and this all stopped, however it just goes to show how powerful the mind really is if you don’t know what’s really going on. Although I can’t do half as much as I used to, I count myself lucky and keep positive.

Charlotte blogs at Charlotte’s Life With JIA.

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Kim

Kim

Real Profiles of Rheumatoid Arthritis
Photos © Kim

Name?

Kim

Age?

46

Location?

West Hartford, Connecticut, United States – for now!

How long have you lived with RA?

Almost 4 years, my RA came on very suddenly, in May 2008, after an international move and a minor lower back injury. My health had been phenomenal until that point.

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

My advice would be to have as much physical fun as you can, while you can. Travel extensively while you can. Do your research, and learn about the science of RA. Teach your friends and family about the realities of RA. Get very familiar with your insurance coverage, and start saving money for a rainy day! And give up wheat!

Do you use any mobility aids?

My husband is invaluable- he does SO MUCH to help me! Ankle braces, wrist braces, wide toe-box shoes, electric blankets, stair rails, elevators instead of stairs neck wraps, daily hot baths, and even warm scarves help tremendously.

How has living with RA helped to improve your life?

Nope, not in the least! Well, it has made me more focused, more organized, more determined, and more stable in some ways. But it has dramatically curtailed my life full of adventures!

Do you have any visible signs of RA?

My body has changed quite a bit with my RA, almost thickening up. I’ve got nodules on my feet, ankles, and wrists. I had dramatic hair loss from the first 2 rounds of meds, vision loss, hearing loss, and my eyes go fire engine RED during a big flare-I have a limp that is getting very hard to hide!

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

LAUGHTER- I get it whenever I can! I sleep and rest whenever I can, and have learned to plan out my time in advance so that I can recover from my daily life. Reading other peoples blogs for the first 2 years helped tremendously- to see that I wasn’t alone, and that there are many forms of hope in spite of RA. Writing helps to release confusion, anger, sorrow and pain. Gardening has gotten me through some of the worst times, and just being outside on a regular basis gives me balance and strength. My wonderful dogs have helped more than I could ever describe.

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

Currently I am on the antibiotic protocol- Minocycline. I get weekly PT treatments, and use anti inflammatory daily. My diet is wheat free, mostly plant based, and I take a wide range of supplements. A recent emergency room visit left me with 5 prescriptions for pain pills, but I avoid them like the plague-In the past 3 years, I have tried MTX, Plaquinil, Prednisone, and was scheduled for Remicaide infusions 3 times, but got pneumonia 2x, that knocked the Remicaide option out for me- My Rheumy has consented to try the antibiotic protocol for 6 months, andif it doesn’t then we might try Orencia. So far, every form of treatment seems to help for a couple weeks, gets my hopes up for remission, and then the RA rears its ugly head again…each time a little bit stronger than before.

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

I’ve been extraordinarily lucky in my life, and have managed to fit 4 lifetimes into my 45 years- Despite this endless pain of RA, I am curious about what form my life will take in the next 2 years, 5 years, 10 years. Whatever happens, I tend to remain happy, curious and eager to experience life to its fullest, on the good days, and the bad.

Kim blogs at RA Redhead.

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