Michelle Maria is an advocate for JRA and RA, an Ambassador for several RA support groups even starting her own on Facebook: CRY (Changed by RA Young). She has worked with the Arthritis Foundation and the American College of Rheumatology. She has been featured in many newspaper and magazine articles as well. She is also a JRA patient, and most importantly to me, a great, longtime friend. I recently had the opportunity to interview her for JRA awareness month. I hope you will enjoy her very open and honest answers, learn something from them, and pass on the information anywhere you can. Awareness only works, if we spread it around! I am also attaching some pictures Michelle was generous enough to share with me for this article.
1. How old were you when you were diagnosed with JRA?
I was diagnosed in 1975 at the age of 2 however I was symptomatic since birth.
2. What kind of symptoms brought you and your parent(s) to the doctor?
Fevers, blister-type rash, extreme fussiness, I could not turn my neck it had a stiffness to it. Water temperature sensitivity and swollen shoulders.
3. How do you feel JRA affected your childhood?
I felt guilty even as a child because I overheard arguments between my parents because they couldn't afford my medications at the time. I remember how my Mom would recycle cans, newspapers and anything else she could. Some days we went without food. I learned to 'hide' my pain from early on.
4. Did schoolmates, friends, family understand?
No. They can sympathize, sure, but they can never truly understand. There are very few people who I have allowed to see that side of RA, which I think turned out to be a double-edged sword. Once I started telling people, how sick I am; they started making decisions for me. They try to tell me what I could do verses letting me decide for myself. That hurts. As far as friendships go, I have lost many friendships because they don't understand how one day I can be fine and the other not so much. I have not had the best relationship with some of my family either; because they think when I have to cancel plans last minute because I'm not feeling well it's because I'm being disrespectful. Not true. I can't plan with RA....after some time, you learn who is there to support you and love you through it all, and who isn't there for the long haul. A very tough lesson to learn that never gets easier.
5. What kinds of medications were available to you then, and how did you react to them?
Oh gosh, I think I have taken EVERYTHING but I do remember LOTS of pills. Baby aspirin (32 a day) Gold Shots, Plaquneil, Feldene, Naproxen, Sulfa drugs, Imuran and Arava. I was sick constantly. I had a bleeding ulcer by the time I was 8. I had terrible skin reactions, sores around my nose and mouth. I also had extreme weight loss. The gold shots did help but I would get awful mouth sores that would last for months. Painful!
6. I know you have had to face several joint replacements. I know there are many physical issues to deal with, but what was it like emotionally for you?
For me, this never gets easier. It's like a slow death of a body part and I grieve each time with each replacement. I get angry, and then I learn to accept, once I accept it - I mentally prepare for the surgeries and get into that mindset that this too shall pass. No matter what, I know I have to do it but I still allow myself time to grieve. I don't like to be a burden to anyone and I don't like to show my vulnerable side either, it's hard to balance that. I'm a work in progress still. Moreso now that my body is showing more and more damage, and I'm getting to the point of which joint needs to be replaced first and WHO is going to help me - or better yet, do I have help.
7. What words would you give to a young person facing this today?
Don't let anyone tell you what you can and cannot do; you know your body and what it's capable of. Set goals and PRAISE yourself for each goal you meet. KEEP good company and be open to your family and friends. You are going to have good days and bad days just adjust your plans as needed. Don't hang on to anger or frustration. Talk to someone in a support group or find a creative outlet and do something you love to help ease your mind. Don't hold it in. Be you and just know no matter what; you are stronger than most people will ever realize. You need to acknowledge that.
8. You have been a real inspiration to others, advocating for JRA/RA, involved in support groups, even starting your own with CRY (Changed by RA Young). You have also told me that you yourself need support. What do you think is most important about support, online or in person, and what would you like to see more of?
I would like to see people working together verses against one another. After all, we all want and need the SAME things, don't we? I've been taking myself to the doctors on my own since I was 16 years old. Sure my Mom helps when I am recovering from surgeries but I truly wish my family was more involved. My family needs to realize that by changing my diet or sleeping better isn't going to CURE my RA and that these statements hurt emotionally when they are said. Overall, I'd LOVE to see more support groups not just for people afflicted with this disease but for families or friends of someone fighting this disease who need more information themselves. Sometimes the family or friends say or do things to hurt the people suffering unintentionally.
9. What kind of obstacles have you had to overcome, what words of wisdom would you like to pass on to others?
I have ALWAYS had the mindset that I would never let RA take over....but as I've learned RA has a mind of its own and it will get you in one way or another if you don't take simple steps to get through it. Eliminate stress, stress is a huge trigger. Know that you having this disease is not YOUR fault and don't allow someone to make you feel that way. CRY it out if you need to and know that it's OK to be ANGRY sometimes and no matter what each day will get better then the next. I have made it through two hip replacements, two hip revisions with bone grafting and a partial wrist fusion. These were not easy surgeries but I knew that with each day it would get better. Even if you have only have one person who you can talk to; talk to them and get it out. Don't hold it in. even if you prefer to seek counseling. Talk your emotions out whether it's by joining a support groups; Good groups that support one another even for the little accomplishments. Keep any negativity in check and don't allow anyone to make your illness seem less severe than theirs. This takes balance in knowing what to say and how to say it. Listen to your doctors; however DO YOUR OWN RESEARCH too. Just because a doctor wants to treat you with something and you don't think it's the best route-voice your concerns!!! It's YOUR body after all. We need to show how serious this disease is and STOP making light of it in commercials to stop these misconceptions, which is why I would love to see more people working together.
10. How instrumental has your family been to you in fighting this disease? Friends?
I have met some good friends online; some with family support and some without. I can relate more to those that don't have much help. I'm very sympathetic to them because I can relate. I have been dealing with a serious chronic condition on my own since I could drive myself to the appointments. It's lonely and isolating. I'd like to know that my family was helping me because they wanted to, however I feel as though it's more of their 'obligation' to help and that hurts. A lot. If you have a child that has a chronic illness such as JRA (JIA) please show your support to them by asking how they feel before their appointment and after. Keep up to date with the newest medications. Learn about the treatments. Organize a yearly team for the runs/walks in your area. Believe me, it will make the world of difference to them.
11. If you could wave the proverbial magic wand and change just ONE thing in your struggle against JRA, what would it be?
MORE awareness for this disease! There is still a HUGE misconception about arthritis; that it's only for old people, it’s not. 36 years later I still have to argue to park in handicapped parking because I don't 'look sick'. More awareness is needed and with more awareness comes more funding, with more funding there may be a CURE!!
12. What do you see in the future of JRA, what are your hopes? Fears?
While I know I'm lucky to have only had hip replacements; my body is showing more and more damage. I need my shoulders replaced and right ankle. My fear is becoming a permanent burden to my family. I worry DAILY about surgeries and the outcome of them. I worry that my medication will stop working again and I'll be in constant pain again. My greatest fear is that I will lose my independence and I don't want that to happen. It terrifies me.
Thank you for your honesty, Michelle. Your insights and the things you have learned along the way will be of great help to people just starting on the RA path. Thank you for your support, and know you always have my support and friendship.
Published On: July 17, 2012