Real Profiles of Rheumatoid ArthritisPhotos © Gloria
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.
Topics: Young with RA