Real Profiles of Rheumatoid Arthritis

Photos © Jolene Gatmaitan

Name?

Jolene Gatmaitan

Age?

24

Location?

Quezon City, Philippines

How long have you lived with RA?

Symptoms started when I was 11 years old, but I was officially diagnosed 2 years ago (2010). Almost 14 years.

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

Breathe. It’s not easy to take it all in, especially when you’re diagnosed at a young age. Surround yourself with family and friends, psychosocial support helps big time! Also, communicate with your doctors and other health personnels. Ask questions, options and always relay your concerns.

Do you use any mobility aids?

Both my wrists are involved so I have wrist splints worn during flares.

How has living with RA helped to improve your life?

I’m almost in my last year of medical school and it’s not easy taking care of other people when you can’t even take care of yourself. It’s not helping to read and learn of the future disease complications either! But, having this disease made me more compassionate and emphatic towards my patients because I have an idea how chronic pain feels like. I learned to appreciate my life more, as there are others who are suffering a great deal of pain– worse than what I have.

Do you have any visible signs of RA?

I have difficulty extending and flexing both my wrists, both starting to show ulnar deviation. My left index finger looks like a small sausage.

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

I spend time with my boyfriend, close friends and of course my family. They distract me from the pain. I also talk to God about having RA, it’s cathartic. Most times, I sleep, hoping the pain will be gone when I wake up.

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

I’m currently on Hydroxychloroquine, Methotrexate, Folic Acid and pain meds (Celecoxib, Etoricoxib). I was on Tocilizumab therapy 2 years ago for 6 doses. I have also tried Acupuncture and Yoga as forms of treatment. I had steroid injections on both my knees some months ago due to effusion I was not even aware of!

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

The pain sucks big time. But you’ll eventually learn how to deal with it. It’s all right to feel depressed. Just don’t forget that, like most things in life, “this too shall pass.”

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Real Profiles of Rheumatoid Arthritis

Photos © Wayney

Name?

Wayney

Age?

34

Location?

Myrtle Beach, South Carolina, United States

How long have you lived with RA?

27 yrs for JRA, osteoporosis 25 yrs, OA, FMS 10 yrs, facet joint arthritis, peripheral neuropathy 5 yrs.

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

Learn all you can because “Knowledge is Power!” I definitely believe this is one of the best ways to not only survive having Ra or a related condition, but to thrive. But, using reputable sources is the key to having knowledge. I was diagnosed at the age of 7 with JRA and my mother made the doctors include me in everything since it was my body and I had to live with the disease. My doctor was great. I was seen at a children’s hospital and was one of their cases that students were brought in to see. All too many times if the students couldn’t answer the doctor’s question, he’d turn to me and I’d answer it. That shocked some students. But, it was things I needed to learn about my body. About 10 yrs ago during a PT evaluation I shocked the PT. He asked if I had trouble lifting a gallon of milk or a lg bottle of laundry detergent etc. I said no, because I knew better than to stress my joints in that way. I either bought smaller sizes OR my husband split large containers into smaller ones. He asked about carrying heavy items, and I laughed. I said if I could help it, I didn’t carry heavy items. I’d slide them along the floor whenever possible. If that wasn’t possible, I could carry the items fairly easily…it was later that I paid the price. I could do many things before that I knew were not best for me to do. I learned that at an early age during PT/OT and from my pediatric rheumy how to live a great life in spite of RA.

Do you use any mobility aids?

Wheelchair, walker, forearm crutches, bilateral ankle foot orthosis (AFO) with brace and elevated heel to compensate for ankle contractures, grabber, shower chair. Without the AFOs, I can’t stand at all. I use my forearm crutches most of the time because they’re more convenient and easier to use getting in and out of vehicles. The trade off is that there is less support and stability with the forearm crutches. At times, I need more support and stability so I will switch to a walker. And if there is a lot of walking to do, I’ll use my wheelchair to keep my energy level up so I can enjoy the activity more. I have had stares and looks but since I’ve been using these items, NO ONE has given me any kind of problem about my use of a handicapped parking spot! Before, if I parked in a handicapped spot or if my husband did so for me and I was walking without any assistive devices, I’d get a lot of stares and some rude comments. Some guy once told me he was a police officer from a large city and it was people like me that he ticketed. He gave me such a hassle. His wife even bumped my husband with their vehicle so they could drive off after the man shoved my husband. Sadly, our local police couldn’t do much since we didn’t get their license number. So, it’s almost good to have something visible to keep the comments at bay!

How has living with RA helped to improve your life?

I’m more compassionate. I am also more knowledgeable about health issues. At times my family and friends come to me for information because they know I have the resources to help them. I’ve learned the value of being a human being not a human doing.

Do you have any visible signs of RA?

My hands are visibly affected. Two fingers on my left hand curl toward the palm and I have less mobility in them. I have swan necking and hyperextension in almost all of the other fingers. My gait is very visibly affected. I walk very stiff-legged and slowly. In fact, it’s almost a waddle when I use my crutches! If I am not wearing my AFOs, my feet are very visibly affected. My toes are permanently bent. I can either put the toes of my right foot on the floor, or my heel on the floor but I cannot do both. In fact, because of how my toes are all curled under, when I put my toes on the floor, the tips of them touch the floor rather than the bottom of them. I have horrible posture due to back pain.

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

I read, check in with an online support group, talk to my Mom (who has polymyositis, RA, and OA) talk to my best friend of 24 yrs, who also has RA and scleroderma. (Sadly, I practically dx’d her RA!) I used to do a lot of reading of info on RA but being in a nursing home w/o Internet access for 2 yrs after spending almost a year in 3 separate hospitals has me behind on doing that and I just haven’t gotten back into it in the 3 weeks I’ve been home. I journal. Distraction is a great help. I watch funny movies. Spending time with people who understand is a huge help. My family and friends have low expectations for me when it comes to doing anything that is physically tiring. My faith also helps.

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

I’m on: Arava (RA), Calcium(osteoporosis), Folic Acid(prevent hair loss with Arava), Methadone(pain), Mucinex(chronic sinus problems), Neurontin(nerve pain), Prednisone(inflammation), Provigil(chronic sleepiness as well as sedation from medications), Robaxin(muscle spasms), Salagen(Sjogren’s Syndrome), VesiCare(bladder problems), and a Vitamin (which is less meds than I was on 4 yrs ago!)

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

I know I would not have gotten through the last 3 yrs without my faith. The doctors and nurses were afraid I was not going to make it. I was in a state they can’t explain. I spoke to people, appropriately answering things, but they could tell I wasn’t conscious of what I was doing and saying. I remember very little of that period. To me it was as if I was asleep the whole time. A few times I was having odd dreams that I thought were real. They told me I might never walk. And that it would take 2-3 YEARS of daily intensive therapy to stand. I had a delay of 14 months before beginning therapy once I got to the nursing home. But, once I began PT on Jan. 5th, 2011, (for an hour a day three days/week), I was able to stand on March 29th, 2011. I took my first steps on Apr. 18th, 2011. I can definitely say that while it was not easy, it also was not intensive. I know that at my sickest, people around the world were praying for me. And two people sent prayers to the Wailing Wall in Jerusalem. I fully think I made it because of the prayers of all of those people. It wasn’t long after the prayers were sent to Jerusalem that I really began to improve. I believe that prayer is what kept me alive and got me to the point of walking. I feel God has a reason why I’ve been through all of this.

Wayney blogs at: http://wayneyp.blogspot.com/.

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Real Profiles of Rheumatoid Arthritis

Photos © Lindsey Thies

Name?

Lindsey Thies

Age?

29

Location?

Norwalk, Connecticut, United States

How long have you lived with RA?

I was diagnosed after 10 years of symptoms at the age of 20. So 19 years total.

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

Be your own advocate and learn all you can. Also don’t let the doctors bully you, you are their boss!

Do you use any mobility aids?

None at this point.

How has living with RA helped to improve your life?

My disease has given me compassion, and that fighting spirit to make my dreams come true no matter what.

Do you have any visible signs of RA?

My hands and feet are a disaster, plus the visible signs of taking prednisone for too long.

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

Two years after diagnoses I got a puppy and she brought me out of my funk. Also Facebook support groups really helped me. Also don’t be to proud to seek professional help when you need it, when I started college I had a hard time coping with all the new responsibilities and RA.

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

Well I have been trying to get pregnant for 2 years now, so I can only take prednisone and plaquenil. I really have to work on reducing my stress which always benefits my RA.

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

My dream was to get my college education and have a great job. I started college 4 years after being diagnosed with RA. I am currently about to graduate and have a job working as a product developer for Pepperidge farms. Also while in college I studied abroad in Guangzhou, China for 6 months, by myself!! The point is I thought my life was over when I got my diagnoses and it turns out it had just begun!!

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