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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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Tim

Tim

Real Profiles of Rheumatoid Arthritis
Photos © Tim

Name?

Tim

Age?

23

Location?

Coventry, United Kingdom

How long have you lived with RA?

16+ years.

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

Never let it get you down, I always find my mood and pain are somehow inter-related, so stiff upper lip as it were! Be pro-active and set yourself goals to work towards, discuss the right medications with for you with a specialist, see a nutritionist or get food allergy tests. For example 10 years ago I had things like ‘be able to open a soda bottle or car door’ now it’s things like ’2 years to train for a 32km run and about the same time to become a Jiu Jitsu instructor.’ Once one target is met, you can set a new target and although for some people the limit may be much more than mine, I would hope for someone that is freshly diagnosed with RA, they too might know that although it is hard work they can achieve a relatively normal life.

Do you use any mobility aids?

None!

How has living with RA helped to improve your life?

If I hadn’t have had a horrible debilitating auto-immune disease teach me to have mental and emotional strength, to cope with and be determined to get going when the going got tough, to stand up under massive strain and say “bring it on, I got plenty left!” I would never have got as far as I have now in life. Aside from that I probably have a much greater appreciation for little things in life that if I had never been ill I would have taken for granted. I also am probably far less judgemental and I try to think from other peoples perspectives before I get critical of them, you just never know what people are going through!

Do you have any visible signs of RA?

None!

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

Ask my mother, I more often than not have actually forgotten I am chronically, it’s only when someone out-performs me physically who shouldn’t that I remember. Then I use my injured pride as a driving force to achieve ever greater physical feats, I don’t recommend trying that one at home though and everyone else is probably much more mature about it than I am.

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

None!

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

Despite it all I live a vaguely normal life, I have an engineering degree in Aerospace Tech and hopefully soon a job with which to put my knowledge and skills to good use. Better for my health than a desk job I suspect! As a side result of having an auto-immune disease and meeting the goal of overcoming it, life is no longer fun if it isn’t challenging, so I am much into the outdoors and doing things like survival courses with field craft and camp craft, cross country cycling and hiking. If I am not putting stupid demands on my mind and body, then I am probably reading or playing video games, or having good times with friends and family!

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Rebecca

Rebecca

Real Profiles of Rheumatoid Arthritis
Photos © Rebecca

Name?

Rebecca

Age?

17

Location?

Brockville, Ontario, Canada

How long have you lived with RA?

Developed at around age 8 or 9. My first diagnosis was at age 9, second diagnosis following biopsy at 16… the doctor that gave me the first diagnosis lost his licence in an unrelated incident and so, when the swelling temporarily went down, the diagnosis was all but forgotten about and ignored for years.

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

Firstly, be persistent! With my diagnostic struggles, countless times having difficulty in school because even teachers couldn’t understand my limitations, struggling to get doctors to take me seriously… I have learned that nobody understands your body, limitations, needs, and abilities better than you. You need to be persistent in this, whether a doctor saying, “I don’t feel the need to run more tests” when you know you still need more answers and need to make them realize this, or saying “no” when your phys ed teacher tries to get you to do physical activity you know will harm you. You are in the drivers seat with your medical life, and you need to take responsibility for it. Never back down if you feel your health depends on it, and don’t accept answers that contradict what you know has to do with your body, even if it’s a doctor!

Do you use any mobility aids?

I am usually able to hobble around well enough on my own, but if not, I’ve got my crutches, or my mom and boyfriend to lean on.

How has living with RA helped to improve your life?

I’ve learned to never take anything, especially your health, for granted, because nothing is a given in life, even if it should be. With RA, also, I have found that a lot of things seem easier to deal with, and therefore give me a lot less stress, just because they seem insignificant in comparison to the battle that is sometimes a simple daily task. It’s a blessing in disguise, really, this ability to not give a damn about issues and therefore tackle them easier because I have this, “RA is worse, I’m getting through. This…? I could get through this while sitting on the toilet!”

Do you have any visible signs of RA?

I have scars from a biopsy on my right knee, as well as stretch marks on it from a specific flareup I had a few years back. They’re finally starting to fade! My right foot points inwards naturally because of deformation of the right knee, and my toes and fingers are starting to show subtle deformities. I usually have inflammation in my knees, fingers, wrists, jaw, and sometimes other joints, and my finger and toe nails are yellowing from my methotrexate. My hair is starting to thin from slight hair loss from mtx, but the only people who notice are those that know me very well.

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

When my dog was still alive (she passed earlier this year), I would cuddle her. She could always sense when I was in pain, and would even lick the joints that were bothering me the most. It always comforted me. I always felt like she somehow understood. Now, I run an RA blog. It helps, knowing I’ve made many people more aware of my condition. The feeling that I have done something good gives me a lot of comfort. Other than that, I will sing as loud as I can (unless my jaw hurts too much), watch movies, hang out, vent to my boyfriend, whatever.

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

I have been given many steroid injections and oral steroids, but none worked. Now I inject methotrexate weekly, though I plan on coming off of it because it isn’t helping and the side effects are too overwhelming for me to cope with. I smoke medicinal cannabis to help with the pain and to help eat when my jaw is acting up, and I do yoga with my friend, Becky, to try and keep a little active.

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

RA is a disease that you need to take control with. I find doing things that benefit the cause helps. I, personally, blog (if you are interested, feel free to check out my RA blog www.arthritisy.tumblr.com or my RA-anecdotes blog www.those-ra-moments.tumblr.com) to help spread awareness for the disease and get my feelings about it out. I find it helps, and every time I see, “I never knew RA was like that! Thank you for informing me” or “I have started donating to an arthritis charity in my area after seeing your blog,” it makes me feel so warm and good inside!

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Amanda-Gibson

Amanda Gibson

Real Profiles of Rheumatoid Arthritis
Photos © Amanda Gibson

Name?

Amanda Gibson

Age?

25

Location?

Lauderdale, Minnesota, United States

How long have you lived with RA?

I was diagnosed 15 years ago, but the onset of symptoms was much younger. It could have been as early as age 2.

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

It can seem overwhelming, and you might want to focus on the things you’re “losing” from your life. Try not to do that! Instead, take delight in the things you CAN do. Any day that you can tie your shoes or cook your food or open a soda bottle are days that you should feel like a superhero!

Do you use any mobility aids?

I don’t have any currently, but I’ve been looking into getting a cane to help with flare-ups. I’ve been falling down a lot more.

How has living with RA helped to improve your life?

As I said above, I try to take delight in the small things. It keeps me positive and upbeat. It makes me fight harder to keep the freedoms I have.

Do you have any visible signs of RA?

I have swan-necking in my hands, and my feet are hammertoed. I have scars from two different surgeries – a right wrist row carpectomy and a total joint replacement in my jaw.

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

When I feel down, I don’t keep it in. I turn to my friends and loved ones for comfort. They know that it’s hard on me, and they definitely try to keep me from despairing too much.

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

I take Enbrel and Methotrexate, as well as Advil for the pain and stiffness. I try to walk as much as possible. Swimming and massages are great too! I’ve also started float tanking, where you lie in super-salinized water. It feels amazing!

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

I’m a total nerd/geek/whatever you want to call me. If you ever want to talk about anything, find me on Twitter at @geeklygibby. You can also read my blog at http://ramandag.wordpress.com.

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Nikki-Kelliher

Nikki Kelliher

Real Profiles of Rheumatoid Arthritis
Photos © Nikki Kelliher

Name?

Nikki Kelliher

Age?

21

Location?

Vienna, Virginia, United States

How long have you lived with RA?

12 years. I was diagnosed when I was 9 years old, my parents orginally thought I had lyme disease.

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

Besides the obvious start treatment right away I would say, don’t let the label scare you – you’re still the same you that you were before you were diagnosed with a disease!

Do you use any mobility aids?

No, I do not.

How has living with RA helped to improve your life?

I’ve learned not to take my health for granted, my “good” days are great days. I also believe it’s made me stronger, I’ve gotten so good at dealing with the pain that petty things don’t bother me as they would someone without RA.

Do you have any visible signs of RA?

My lovely fat fingers that can’t wear my favorite rings on most days, I make up for it with crazy nail polishes though. Also, I have a bunion along with the swollen joints in my feet so I limp pretty much ALL the time.

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

I love reading message boards, and of course RA Guy! It’s really helpful to be able to talk with other people who know what I’m going through since unfortunately it’s hard to find with my family and friends. My family and friends are all supportive of me but, as much as they would like to, they just don’t understand.

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

I am currently taking naproxen and methotrexate

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

I absolutely love the outdoors, I am a total beach bum and if I had it my way I’d quit my office job and run a shop on the boardwalk in ocean city. Every weekend I go down to my familys river house and wind down with some boating and fishing, it doesn’t get much better than than that to me. My wonderful boyfriend is extremely supportive of me and patient with me on my really bad days, I am very thankful for him and my parents. Nothing annoys me more than “ohhh, you’re too young to have arthritis!” – I wish people were more educated about RA.

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