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Kayleigh-Payne

Kayleigh Payne

Real Profiles of Rheumatoid Arthritis
Photos © Kayleigh Payne

Name?

Kayleigh Payne

Age?

24

Location?

Westmeath, Ireland

How long have you lived with RA?

Almost 12 years.

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

GET THE RIGHT MEDICAL TEAM AROUND YOU!!! Shop around for the right consultant for you if needs be, I wish I had! I could have saved myself years of agony and severe damage. Also stay positive, its power is invincible. And meet other people with RA, whether in person or online, it has massively improved my outlook.

Do you use any mobility aids?

Sometimes a crutch, very often my husband!!!

How has living with RA helped to improve your life?

I am so empathetic of people with long term illnesses and I doubt I would be so compassionate if I had not felt the pain I have! Also, I am super strong because of it, I can get through anything!

Do you have any visible signs of RA?

It depends how inflamed I am. When I’m in a flare I have little to no mobility which is pretty obvious. I can have a limp at times.

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

Laughing!!! I am lucky to be surrounded by very funny amazing people who always make me giggle and help release those happy hormones.

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

I’m currently on methotrexate. I also use yoga to keep me mobile, and I’m part of a support group that focuses on “living well with arthritis”.

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

I am an eternal optimist. I have been through hell and still have severely bad days, but I let nothing hold me back – I have travelled the world, work full time, do a lot of charity work, and have gone back to do further education, and I also got married this year to a wonderful man and my best friend and plan on having a big family! You can do anything you want, RA or not, once you set your mind to it and make a proper plan.

I would also like to highlight my Young Arthritis Network facebook page for anyone who wants to get involved in the group.

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Gloria

Gloria

Real Profiles of Rheumatoid Arthritis
Photos © Gloria

Name?

Gloria

Age?

22

Location?

Bakersfield, California, United States

How long have you lived with RA?

I remember dealing with joint pain since I was about 8 years old. The pain, stiffness, and swelling progressed and turned worse about 3 and a half years ago and I was officially diagnosed by a Rheumatologist on January 6, 2011. I was diagnosed as having Seronegative Juvenile Rheumatoid Arthritis. My doctor warned me that if I did not get treated for RA immediately and suffer the side affects I would be unable to walk by age 30.

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

Educate yourself. Research all your medications and other possible treatments out there. Surround yourself with supportive people. Even though nobody will ever understand what you’re going through, it means a lot to have someone care about you and help you with the most simplest tasks. Most importantly take your medications no matter how harsh the side effects are. You don’t have to go through this alone. Family and friends will always lend a helping hand or ear, they are as important as medication. They are the ones that will help you find faith and hope. You mean something to someone whether your healthy or not.

Do you use any mobility aids?

I use a wheelchair when I have to walk for a long time, when shopping I take advantage of the electric scooters they provide. I use compression gloves, and a leg brace. I’m so thankful my family helps me around with everything they can at home. I’m looking for a nice purple cane for when I need it.

How has living with RA helped to improve your life?

I don’t take my body for granted anymore, if it tells me to slow down, I make sure to slow down. It has helped me learn that I am surrounded by the most extraordinary and loving people anyone can ever ask for. They will stick with me through everything and do the best to help me through my struggles.

Do you have any visible signs of RA?

The tips of my index and middle fingers on both hands are turning outwards. My toes on my left foot are also damaged. You can’t really notice it unless I’m flaring and not able to walk properly or move my fingers.

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

I enjoy spending time with my family and boyfriend. My two brothers always seem to distract me or accompany me while I’m stuck in bed not able to move. My Mom and Dad are just the best, they always have open arms, and ears for me, and have helped me be more positive about my situation. When I need a laugh, or an outing my boyfriend always tries to convince me to go out and distract myself. Everyone has showed me that when I’m down, it’s better to get out of bed no matter how difficult it is and be distracted.

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

I am currently on Enbrel (thinking of switching to Remicade), Methotrexate, Plaquenil, Nortriptyline, Vicodin, Ibuprofen, Methocarbamol, Ambien, Ergocarciferol, Meclizine, Folic Acid, B-complex, and Calcium.

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

I surround myself by positive people. Those who love me are always around. This disease is too stressfull and painful to be around negativity. I’m as stubborn as they come. Even if I have no use of my hands or legs , I’m still up trying my best to do things on my own.

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Sarah Krysl

Sarah Krysl

Real Profiles of Rheumatoid Arthritis
Photos © Sarah Krysl

Name?

Sarah Krysl

Age?

19

Location?

Hillsboro, Missouri, United States.

How long have you lived with RA?

I was showing symptoms of RA around 16 and blew it off thinking it was just pain. Finally went to the doctor and was told I didn’t have it. Got a second opinion, and was diagnosed with Rheumatoid Arthritis at the age of 17. I have had Rheumatoid Arthritis for 2 years.

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

Take a deep breath…and relax. Start your research. Grab a close friend or family member. Start looking up what our disease is. What it all entails so you know how and when to do what you need to do. Don’t freak out when you google “images” of rheumatoid arthritis. Remember….BREATHE. Once you start understanding it all…start looking at it alone and get used to the fact that it is who you are. I am still learning things about RA that I have not yet found.

Do you use any mobility aids?

I work with therapy puddy once a day doing exercises. It loosens up my hands. I need to invest in a jar opener and a new can opener. Hands are soon to be in splints at night time. I play softball at the collegiate level which is a daily challenge. I have to wear a wrist brace to hold my joint together and for support.

How has living with RA helped to improve your life?

Living with RA has helped me become a better being all around. It makes you step back and look at life at a different perspective. You have to adapt to your life and live in the moment. You have to be thankful for the things you can do and try again tomorrow for the things you cannot do today. Just try again again and again. Never give up. I am living with an autoimmune disease and playing college softball. I feel as if I am an accomplished human. When I see someone in pain I am the first to jump up and help, I know what pain is. Not just pain, pain. But pain that you can’t even express. Being able to do the things you can do…it makes you thankful for the things you can do.

Do you have any visible signs of RA?

My fingers are cricked and don’t bend all the way close. My knuckles are bigger than the average person. Depending on the day, flare ups in my knees are noticeable.

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

I play the piano and when my hands feel like giving me a treat, they let my fingers run up and down that keyboard like no ones business. Because I play a college sport, I have to PUSH myself daily. I never give up or say “no, I don’t feel like it today.” I have to or I wouldn’t be able to do what I love EVERYDAY. Push yourself, and you’ll be happier.

Blogging does WONDERS. Follow people, join a group. Do something. Meet people who have the same problems as you. When you complain to mom or dad about how bad your hips are hurting, they don’t and will never understand the amount of agonizing pain you are truly in. Talk to someone who has been there and done that. They can help you cope and get rid of the flare. ADVICE IS THE KEY!!

Overall, do something you have lost the ability to do, and DO IT. ENJOY it and be THANKFUL for it. (Even if it’s only one day every other week.)

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

Methotrexate, Humira, Meloxicam, Sulfulzaline, FABB TAB, Prednisone.

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

I am a sophomore in college. I am a college athlete playing softball. I am a daughter, a sister, grand daughter, niece, cousin, a god mother, a friend, teammate, musician, and I am a fighter against Rheumatoid Arthritis. I will not let RA bring me down or take the game away from me. I will play until I cannot play anymore. RA cannot take something from you unless you let it. FIGHT THE GOOD FIGHT.

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Briana Edwards

Briana Edwards

Real Profiles of Rheumatoid Arthritis
Photos © Briana Edwards

Name?

Briana J Edwards

AKA: Gimp-opotomus, BamBri (usually joined with “get up Bambri!” said like Bambi’s dad in the Disney film…..my dad thinks he’s so clever), Lefty, and plenty more.

Age?

23

Location?

Atlanta, Georgia, United States.

How long have you lived with RA?

Probably for 2 years or more. At least that’s when I noticed that something just wasn’t right. I just got diagnosed in March of this year tho.

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

Finding a supportive group of people who honestly care about you has been very important for me. I also think it’s a good idea to talk to your family and try to have them understand why you need so much help and why you’re always so tired. Your family can be the one you were born into but it can also be the one you choose to be part of. I was lucky enough to be born into a very large family but I am also very grateful for my family of friends. Having so many people who really want to help makes it a lot easier to beat this stupid frustrating painful unfair RA.

Do you use any mobility aids?

So far I’ve only needed a knee brace since starting treatment. I used a walker for a few months before I was diagnosed. Well it’s more I’m too stubborn to use it when I need it.

How has living with RA helped to improve your life?

It forced me to move back home with my family which got me out of a bad relationship. It’s also made me realize just how strong my inner superhero is even if my RA-self is falling apart.

Do you have any visible signs of RA?

Slight deformities of my wrists and fingers. My elbows and knees no longer straighten so my posture is pretty bad.

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

Wow…umm. Mostly I try to cry it out. I’ve always been one to bottle up my emotions and be strong and not let things bother me but then I would tend to have major breakdowns. I’ve found that crying it out helps me. I still hide in the shower to do it tho. I’ve had enough pity. Not to mention when I cry then my mom cries and then I cry because I made her cry and it just becomes one big mess. I also like to get lost in a really good book. I like fantasy books because I’d rather be thinking about flying on a dragon than thinking “how long can I hold it before I struggle to get up and go bathroom?”

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

10mg Prednisone, Methotrexate, Plaquenil, and Folic Acid. I go to physical therapy twice a week. I see my chiropractor at least once a week and I get a therapeutic massage at least once a month. Chiropractic care and massage therapy have been wonderful tools to help me.

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

I have nine siblings. They drive me crazy but I love them all. I am still learning how to define this new me but so far I kind of like being the left-handed, quick-witted, adorably quirky misfit that also just happens to be living with RA.

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Alyssa Hollingsworth

Alyssa Hollingsworth

Real Profiles of Rheumatoid Arthritis
Photos © Alyssa Hollingsworth

Name?

Alyssa Hollingsworth

Age?

20

Location?

Rome, Georgia, United States.

How long have you lived with RA?

I started showing symptoms for RA when I was 17, but it took about six months for a diagnosis. I was misdiagnosed with fibromyalgia by the nearest pediatric Rheumatologist (who was a two hour drive away, and never stayed in the room with me longer than fifteen minutes). I was unable to see an adult Rheumatologist until turning 18. But once I got in with a good doctor, I was diagnosed correctly and started on treatment.

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

First off: Take a deep breath. Pour yourself some tea/soda/coffee, cup it in your hands, drink slowly and don’t you dare worry about one thing until you’ve finished your cup. Take five minutes to sit still and quiet.

If you have an overactive imagination and a good friend or family member, begin the research of the RA by asking your friend/family member to do the google search for (or with) you. When I was first diagnosed, my mom did the intense research and then told me what I needed to know. Since just seeing some of the pictures made me sweat and cry, this was a good way to hear bad news in a gentler way. As I got used to the idea of it, I began to do more of the research independently.

Do you use any mobility aids?

Right now I always have a stretchy medical bandage thing for finger physical therapy, and I’ve spent time in and out of braces. I need to invest in a good bottle opener.

How has living with RA helped to improve your life?

I think living with an autoimmune disease can be a gift, because it forces me to live consciously.

Recently I had to have surgeries on my fingers (see below). Before my second surgery, I found myself just laying my hand flat on my desk and staring at it. For those two or three weeks before I thought I’d lose the ability to ever straighten that finger, straightening it was a blessing—it became a miracle. RA makes me appreciate what I have.

Do you have any visible signs of RA?

Pre-this summer, I had significant swelling in my pinky and pointer fingers on my left hand and on my middle finger on my right hand. A few months ago, my joints began to collapse with no warning. I’ve had fusion surgery on my pointer-left, which has left my finger scarred and frozen (won’t bend anymore). I had surgery my right-middle, but unexpectedly the doctor was able to save the joint. This means more scarring and a lot of physical therapy, but at least it still bends. The pinky’s still swollen until later this fall, when I expect I’ll be having a third surgery.

I also have Raynaud’s Syndrome, which means cold and blue feet.

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

Before the collapse of my joints, I would do small, quiet things that brought me joy at least once a week. For me, that was going to a local coffee shop with a favorite book, buying fresh bread, or hanging out in a book store.

After the collapse of my joints, I’ve found I need an extra push. So I am beginning to do small impossibilities in increasing doses. I try to do one small impossible thing a day (like taking the time to eat a salad or stretch), one bigger impossible thing a week (giving myself the HUMIRA shot or going to a dance class), and one really impossible thing a year (travel abroad or write a book). Since I started doing these things, consciously, I’ve found I feel more in control and confident.

Blogging has also done wonders for me. As a young adult trying to deal with this when my peers were all caught up in the latest fads and gossip, I often felt very alone. Blogging allowed me to express what I felt—the good and the bad. It is also a huge encouragement going forward, as I’m able to look back at some of my entries and remind myself of my optimism (or sometimes remind myself that this pit isn’t the only one I’ve been in). Recently I discovered that by being honest on my blog, I also opened the door for others to be honest in their struggles. It’s a great way to create a community and to get support.

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

HUMIRA, Methotrexate, Plaquenil, Prednisone, plus tons of vitamins.

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

I’m in my third year as a college student, getting my undergraduate degree in English/Creative Writing. I work part time during the semester and full time at breaks. I travel a lot, and have gone into third world countries to do aid work. I’ve written three full manuscripts (novels), and hope to one day be a published author. All this to say—RA might try to take our hands, our joints, but it can’t stop us from doing what we love (unless we let it). C.S. Lewis said, “You do not have a soul. You are a soul. You have a body.” I cling to this whenever I feel myself slipping. I am who I am, and RA can’t cripple that.

If you interested in learning more, here’s my blog: http://midenianscholar.livejournal.com/

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