Our Indianapolis Arthritis Walk Vice Chair, Kate Nicholson, got engaged to Brian Johnson about a month ago. In this blog post, she interviews Brian about finding out she has fibromyalgia, how he sees their future, and why he supports the Arthritis Foundation.
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| Kate & Brian Volunteering at the JBR |
Kate: Do you remember on our first date when I told you I had fibromyalgia? What did you think when I told you? What expectations/thoughts did you have as a result of that in our early dating time?
Brian: I remember the night clearly and remember the exact moment as we walked down the Canal. I recall asking a lot of questions. At the time I had heard of fibromyalgia, but did not know the specifics of the condition so I just started asking questions and listened a lot. It was evident to me that you had the condition under control and you were very proactive in not letting it control your life. The fact that you had volunteered for several fibro studies told me that you were interested in not letting your condition define you. If anything it showed me that your ambition matched my own and you were going to live and enjoy your life regardless of fibro.
Now, was I scared a little? Of course, and I think I even brought that up to you that night. But it occurred to me that if I was scared about it, then how must you feel in broaching the subject on a first date? My only expectation was that I wanted you to be honest with me about fibro and you totally were from the beginning.
Kate: Now that we are planning the rest of our lives together, and I've been diagnosed with two more arthritic conditions, what do you worry about?
Brian: Now that I've been with you for nearly a year I have much less worry. We've had some great conversations and it's my belief that your dogged determination will win out over any diagnosed condition. I've envisioned you saying, "Arthritis and fibro be damned, I've got stuff to do. So give me another option, Doctor, or I'll find one myself." It's that determined attitude that keeps any past worries I ever had at bay.
Not to say that you won't want or need to hold my hand for support now and again, but I feel like we draw strength from each other and will ultimately find a way to do everything we want to do in life including having a family, finishing school, traveling, and whatever else suits our fancy.
Kate: Let's talk about the practical side of chronic conditions. Can you describe for the readers, from your perspective, the ways that you see me taking care of myself and the things you do to help me?
Brian: I see you taking a lot of different approaches to the various conditions you deal with daily. There are medications, but you know the medications forwards and backwards enough to be able to discuss with your doctor about dosage and how different doses may help in the event of a flare-up. You trust your doctors, but don't rely on them to be the only authority in the room. And, you're not afraid to fire them if they give up. On my side I have a list of your meds just in case. I'm no expert, but I have the information should I need it!
I also see you making an effort to stay active with regular walks as well as getting a yoga session as often as your schedule allows. You are also willing to try new things like the TENS Unit, massage, physical therapy, or the new pain patches. You have the same mentality when it comes to your diet. You eat good food. Not to say that you don't indulge, but more often than not you make choices that will benefit your conditions and then find a way to make them darn tasty! I'm also open to trying new foods and recipes, so we can be healthy together.
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Kate and Brian after Brian’s first marathon at Disney World in January 2011 |
Finally, you get the rest that your body needs to do what you need to do. Again, not to say you sacrifice or are always in bed by 9 pm, but you know what it takes and endeavor to give your body what it needs. I see that you are preparing yourself to have so many options that something is going to work or a combination of things are going to work when things flare-up.
On my side of things, I support you as much as I can and don't become a barrier myself. If you need extra sleep, then I keep quiet so you can rest. If you need an easy weekend, then I don't complain that I wanted to go out. There will be plenty of weekends to go out in the future!
I also help out on the exercise component by going on walks and helping us stay active. Since I am a long distance runner, I can at least begin to understand the muscular pain and tightness that comes with fibromyalgia. We have a roller that we both use on sore muscles and we even relax and let the other person "roll" the other's leg muscles. I really enjoy these sessions because we get to chat for a good hour without interruption. How many couples just sit next to each other and talk for an hour plus straight without any TV, Computer, Blackberry, iPhone, iPod, Facebook, Twitter or Xbox?
The most important thing as a partner/spouse/significant other is to try and understand what your loved one is going thru every minute of every day and not be a barrier to them yourself.
Kate: Your last sentence really stood out to me. You really have been amazingly supportive. What other words of advice do you have for people who have a significant other who is surviving arthritic conditions?
Brian: Besides not being a barrier or burden to the person who has arthritis...I know I said that already, but I thought it was worth saying again. My advice is, "Read up!" or "Get knowledgable!" Go online, talk to YOUR doctor, find some information and be informed. The arthritis we are talking about is NOT the same that Grandpa had at the age of 80. This is NOT just "the aches and pains of getting older." It's a chronic medical condition.
DO NOT become the "know it all," trying to tell your loved one the best way to treat their arthritis. The information you find is so you can be prepared for what comes next, and be understanding of what your loved one is going through. As a guy, we sometimes want to try and fix the problem instead of just being there for support. This isn't the time. Go fix a lamp instead and take out the garbage while you're at it.
Kate: Ha! I know you meant to be funny, but I can't tell you how much I appreciate that you take out the trash! Let's chat about the Arthritis Foundation for a minute. We've attended Bone Bash. You volunteered with me at Jingle Bell Run (and ran it!), and now you're working with me for the Arthritis Walk in June. Why do you think it's important for families to attend these events?
Brian: From a personal perspective, it's important because I'm not the only person on this planet and I could be diagnosed with arthritis tomorrow. I'd hate to decide that something was important AFTER I needed help for my own cause. In three words, "pay it forward."
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| Kate & Brian at the 2010 Indianapolis Bone Bash |
On another note, it's events like Bone Bash, The Arthritis Walk, and the Jingle Bell Run that raise money for arthritis research. Because of that research, aspirin is no longer the primary treatment for arthritis. If we can raise a little money and be able to manage arthritis, I say we raise a little more and see if we can make arthritis even less than a minor inconvenience.
Finally, you're my family. If this is important to you, then my place is beside you or where ever you need me to be, whether it's running a 5K, dressing up in a Bone Bash costume, handing out fliers or tweeting to my friends. I'm there for you because that's what family members do for each other. You'd do the same for me. (Insert Friends theme song here.)
Kate: I'm pretty certain I'm the luckiest girl in the world to have you by my side. Any other comments or thoughts for our readers?
Brian: Only one more thing to add. On the worst day when your loved one who has arthritis is their most irritable, you've lost all patience and you want to hang it all just remember that you don't have arthritis for the rest of your life. And if you do have arthritis, then thank your lucky stars that you have someone who understands what you're going through every minute of every day.
