Gloria

RA Guy Real Profiles of RA

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.

Megan G.

RA Guy Real Profiles of RA

Real Profiles of Rheumatoid Arthritis
Photos © Megan G.

Name?

Megan G.

Age?

36

Location?

Ottawa, Ontario, Canada.

How long have you lived with RA?

Diagnosed at 16, in 1991, so 20 years.

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

Listen to your doctor and listen to your gut feeling. Your doctor knows RA, and you know yourself. Advocate for yourself. If something isn’t working with your meds or a test result doesn’t make sense, ask and ask again. Take the meds your doctor prescribes, and then determine if they work for you. Life is too short to live in significant pain. Find support in your community or the Blogging community. You are not alone, and there are others out there offering support and understanding. Talk to your family and friends. Let them in. Help them understand your struggles and let them know when and how they can help. Ask for help. I’m still trying to improve in this area. Talk to your manager at work. My experience is that it has only been positive and helpful.

Do you use any mobility aids?

I occasionally use both working and resting wrist splints and I haveused a cane (a long time ago), but recently it is looking pretty attractive.

How has living with RA helped to improve your life?

Some days, I can’t see that it has improved my life. Other days, I know that I am a stronger person. I don’t take things lying down. I am a fighter. I am not afraid to ask questions of my doctors and treat them as equals. I am more empathetic. I am a better planner. I am less fearful of the unknown. I am more patient with myself and others. I am more humble. I know myself well.

Do you have any visible signs of RA?

A six inch scar on my left shoulder from my joint replacement from 2009. Soon to be scar on on my right shoulder to match. Two-one inch scars on my right knee from an arthroscopic synovectomy in 1999. Prednisone “hump” on the back of my neck. Ulnar drift in both hands.

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

I walk on the Trans Canada trail and listen to music. I sing at the top of my lungs when driving. I blog – which has been one of the biggest outlets for me recently. I talk issues over with my husband and or family and friends. My Yoga practice has helped, but I seem to be able to do less and less of it due to my shoulders.

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

Meds: Actemra – about to start, Prednisone, alternate day low dose. Diclofenac, daily. Actonel, monthly to prevent bone loss.

Pills: Multi-vitamin, daily. Vitamin D & E, daily.

Other Treatments: Massage therapy. Acupuncture (at times). Naturopathic Doctor, with some success.

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

I am married to a wonderfully supportive husband. He has been known to put my hair in a pony tail and help me get dressed when I can’t manage alone. I am a mom of two funny and beautiful children, ages 4 and 6. They have a world view that is very simple, showing me that life doesn’t need to be complicated. I have amazing parents. They are here for me, all the time, no questions. I blog about my RA life (Sticks & Stones) as a therapeutic and documentation exercise, and to connect with the online RA community.

Kevin Hewitt

RA Guy Real Profiles of RA

Real Profiles of Rheumatoid Arthritis
Photos © Kevin Hewitt

Name?

Kevin Hewitt

Age?

31

Location?

Clifton Park, New York, United States.

How long have you lived with RA?

Officially diagnosed in 2008.

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

Stay positive. It’s a lot to take in at the beginning. Arm yourself with information, not doubt. Find a good support system, believe me, it helps!

Do you use any mobility aids?

No.

How has living with RA helped to improve your life?

It has made me appreciate more of the little things in life. It may sound a little ironic, but it taught me to slow down and enjoy everything.

Do you have any visible signs of RA?

Just swelling at the moment.

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

The best thing for me is to laugh. My kids always put a smile on my face and make me laugh when I need it the most.

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

400mg Plaqunil daily, 200mg Celebrex daily, Rituxan infusions every 6 months, vitamin d 3000 I.U. daily.

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

I still work a full time job. It’s definitely a challenge, but with today’s economy and the bills relating to my RA, I have no choice to push myself until my Rheumy says I can’t do it anymore. My only advice I can give is to stay positive. Learn what you can and can’t do. Somedays you feel you can do everything, so do some. Some days you feel like you can’t do anything, so don’t. Listen to your body most of all.

Sarah Krysl

RA Guy Real Profiles of RA

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.

Briana Edwards

RA Guy Real Profiles of RA

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.