RA Guy on January 13th, 2011
A year and a half ago, during the great “health care reform” debate, I was startled by a little-discussed provision in the proposed legislation that was going to grant an extended period of exclusivity (i.e. protection from generic competition) to biotech firms. According to what I was reading in the press, the aim of these new laws was twofold: 1. ensure that the companies continue to innovate by ensuring that they are able to recoup their considerable research & development costs, and 2. protect consumers from the “inherent” unsafety of generic biologics.
“These Senators are asking the FDA to make a decision that would be very good indeed for the biopharmas – but would increase the future cost of health care. This kind of decision would likely also diminish innovation, as firms tasked their scientists to protect expiring patents, rather than to develop novel treatments.”
Wilmington, North Carolina, United States
How long have you lived with RA?
What advice would you give to someone who has just been diagnosed with RA?
First, find the best doctor you can! Find a doctor that will not judge how you feel based on your test results or the number of swollen joints they can count (or they can’t count) but one that will listen to what you have to say. This relationship, the patient doctor relationship will become one of the most important relationships on your new journey with RA. You want a doctor that is compassionate, knowledgeable and one that is available when you need them. Having a rheumatologist that truly listens when you are trying to explain how you are functioning or not with your RA is paramount. Together you can find a way down this new path, together you can make this journey much easier and together you can learn to manage your RA. You need a team player, a doctor that will go to bat for you if the need arises and one that also is willing to treat the possible pain you may experience with RA. A lot of doctors fail to treat the pain of RA. Find a doctor that will treat all aspects with pain management included. And most of all, RA can at times bring us on an emotional rollercoaster. That journey can be very turbulent at times. Never, ever forget that you can get help with this emotional roller coaster as well. RA can be an all encompassing disease that includes our emotional well being. Please reach out and get that help if you need it too!
Second, find a support group for yourself. Your support group can be a local one that meets weekly or if that isn’t available, find one online. It is very difficult for people that do not have RA to understand all the challenges that come with this systemic disease. Surround yourself with as much RA support as you need to walk this journey. We have all stumbled at one time or another and having others there to lift us up, to give us a helping hand, to give us hope is what makes living with RA easier. Chances are this “group” will become like a second family to you over time.
Third, forgive yourself. When I was first diagnosed with RA I always questioned why. You did nothing wrong. I chalk getting RA up to the luck of the draw. It is what it is. I just now have to figure out what to do manage it and how to keep doing those things I love to do. Try not to beat yourself up emotionally on the what if’s, try not to push yourself physically and do take care of yourself the best you possibly can. Eat well, sleep as you should and find those things that make you smile. For me, laughter truly is the best medicine and I believe that if we can find the humor in things, coping will be easier.
Do you use any mobility aids?
I use wrist splints a lot and find canes or walkers are pretty much too painful with my wrists. I have bought many of the RA friendly cooking tools out there and I am continually trying to modify everything I do to make it simpler for my RA body. I don’t own a wheelchair yet but on those bad flare days, one can find me driving the grocery store’s electric scooter. I suspect that eventually I may need a scooter and when and if that day comes…I have my happy scooter stickers ready! My motto is to keep going.
How has living with RA helped to improve your life?
RA has taken a lot from me physically but I have grown a lot emotionally from this disease. I appreciate the simple things in life and have taught myself to find new ways to do the old things I love to do and still refuse to give up. My process is akin to a forest fire. Once the fire has come and gone, leaving the ground damaged, a rebirth starts. The gentle rain comes, the sun shines once again and the seeds start to germinate again. My forest is now filled with beautiful flora and I tend to it carefully.
Do you have any visible signs of RA?
RA is pretty much everywhere. I have RA in my hands, wrists, elbows, neck, ribcage, hips, knees, ankles and let me not forget…the footsies too. It is quite visible in my fingers and wrists and one arm is shorter then the other. Although my hips and knees do have RA damage, so far they have managed to stay even unlike my arms.
Can you please describe some of your favorite coping strategies for living with RA?
I love to laugh. I really believe that laughter is the best medicine and I try to surround myself with positive people and positive things including uplifting people, music and comedies. I also find that when I am feeling a little bit better that doing creative things helps me personally. I love to write, take pictures, garden (well more like my hubby does the gardening while I direct), and I have two fur babies. I also have Fridates (we go out for desserts on Fridays) with my daughter if I am up for it. I started a blog recently entitled abcsofra.blogspot.com in the hopes of sharing my RA experiences. I also love to read other bloggers stories and I frequent several online RA communities regularly.
Can you please describe your current medical (traditional and alternative) treatments?
I have done the following medications: plaquenil, methotrexate, azulfidine, prednisone, Enbrel, Humira, Mobic, Celebrex, Ultram and multiple narcotic pain medications. Unfortunately I have had many allergic reactions over the years. I am currently taking low dose prednisone and ultram for my ra. I am also taking the following: Evening Primrose oil, Omega 3 fish oils, Chicken Cartelidge II, Vitamin D3, Calcium, Multiple Vitamin and Flaxseed Oil. We don’t eat red meat and I also try to eat an anti-inflammatory diet as much as possible. Fridates excluded.
Is there anything else about yourself that you would like to share?
There is a quote I try to live by: “Keep your heart open to dreams. For as long as there’s a dream, there is hope, and as long as there is hope, there is joy in living.” Anonymous
I have decided to write a bucket list to keep my heart open to my dreams. The first three items are done: visit Disney World, do a blog and write a children’s book. I am now trying to figure out how to accomplish the fourth one…stand at the top of the Eiffel Tower.
Every 6 weeks Jordan, 9, has to have Remicade infusions for juvenile *autoimmune* arthritis & uveitis. She was diagnosed a month before she turned 3. ***There is no cure for these diseases.*** Remission is possible but highly unlikely for J. She has been on Enbrel & Humira but failed both. Current meds include Remicade, methotrexate injections, leucovorin, zofran & naproxen. Despite everything she has been through she is a very happy and positive girl.
Warrior for JRA
My name is Jordan and I have JRA. I am 8 years old, I have been fighting since I was 2. This stuff makes me different.
Earlier today, I started my day by reading the following words on the Facebook page for Toni Bernhard’s book “How To Be Sick”:
I awoke to an email from a woman who finds comfort in the same words I do from Zen teacher Charlotte Joko Beck in Chapter 3 of the book: “Our life is always all right. There’s nothing wrong with it. Even if we have horrendous problems, it’s just our life.”
These words really stuck with me throughout my day. I think it’s true that when you live with chronic illness, it’s all too easy to spend a lot of time thinking about what’s wrong with your life. I myself have fallen into this thought pattern in the past. But over the past couple of months, I have made it a personal goal to focus on what is right with my life. Like I’ve said in the past, no matter how much rheumatoid arthritis seems to take away, the list of what I can do will always be longer that the list of what I cannot to. All too often, it’s just a matter of perspective.
For the many years (almost a decade) in which I worked as a User Experience Designer/Information Architect for some of the leading companies whose web brands are no doubt familiar to most people, I absolutely loved the design work that I was doing, but deep down inside I was sort of bored with the fact that my efforts were being applied to “just another” online retail site.
As with many people stuck in the corporate grind, I longed for my work to have more meaning. Only yesterday did I realize that, thanks to my rheumatoid arthritis, I have indeed accomplished this goal. This Rheumatoid Arthritis Guy website has not only allowed me to connect with others and receive the support I need, but it has also been a creative outlet that allows me to write and design, even on my roughest days. And most importantly, it has meaning…not only for myself, but also for others.
Earlier this year I left my job as a college professor at a local university, partly due to the progression of my rheumatoid arthritis. (Even special accommodations weren’t enough to keep me going.) A part of me was absolutely devastated at the time. I love teaching. I loved being able to motivate my students to do things they had previously not even thought about. But I didn’t like the increased physical pain that came as a result of forcing myself to go to campus on a daily basis.
So I decided that I would focus on subject tutoring and test preparation, as this would allow me to work from the comfort of my own home. Just this past week I realized that not only am I once again teaching, but that I am working with really smart student who are especially motivated to learn even more, in hopes of attending college in the United States. I’m happy that I can play a pivotal role in this process. I originally wasn’t happy with the path that RA forced me to take…but now that I’m here, I wouldn’t change a thing. Honestly.
This evening, I finished my day by reading The Life and Adventures of Cateepoo’s (must-read) post The Best Thing That Can Happen To Me Is Happening Right Now. About a month ago, I landed on Cathy’s blog during a particularly challenging flare (I often go to her page for inspiration, when I’m running short of it myself), and came across these words. As I understood their meaning, and repeated this thought to myself over and over, my flare suddenly went from being “unbearable” to being “bearable”. And I got though things.
These two thoughts that I found online today were particularly appropriate bookends to my day, especially considering that I experienced a pretty severe flare during the afternoon. Even though I had little to no control over most of my body, and the pain was once again off the charts, I found myself completely calm. I was completely present, aware of what was going on, and I knew that my ability to communicate with the outside world was limited (sometimes I don’t even have the strength to talk), but I was okay. I looked at my flare directly, as I had never been able to do before.
And during this time, while I laid there connecting with my mind, I thought to myself: “It feels like I am never going to be able to move again.” (Even though I know that it’s going to pass, the truth of the matter is that it really does feel like I am never going to be able to move again.) I finally saw this thought for the trigger that it is; the switch that I often subconsciously turn on when my flares are at their worst, and which commonly results in increased feelings of fear and anxiety.
Today, everything was different from what has always happened in the past. I accepted the fact that it did really feel like I was never going to move again, but I found comfort in the knowledge that I would once again be moving soon.
Even though it sometimes feels like everything is closing in on us, and that things will never get better, we have to keep moving forward. This is the only way though the constant challenges that come our way as a result of living with rheumatoid arthritis. We can’t go back. We can’t get stuck. We can only move forward…if not physically, then mentally.
No matter what’s wrong, there is still a lot that is right with our lives.
This is MY life, and it’s the best thing that can happen to me right now.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!