Real Profiles of Rheumatoid ArthritisPhotos © Jose
José AKA SKRDad AKA Uncle Hoe and Dad (the last two being the 2 favorite names I have ever been called)
Scottsdale, Arizona, United States
How long have you lived with RA?
5 years and counting… Not that I am counting. Heh…
What advice would you give to someone who has just been diagnosed with RA?
Educate yourself on your condition. Do your homework on this. It is essential that you understand what you are in for, that you know the monster you will battle for the rest of your life. There are many different colors and flavors of RA. There are many treatment options and you need to be able to make educated choices. You also need a good support system. Your medical team, family, friends… It’ll take support from all. Twitter is a good place to find supportive people who know what you are going through. Other places are blogs and Online Discussion Boards.
Do you use any mobility aids?
I have a cane. I’ve used it mostly when I was rehabbing from knee surgery. I had both knees scoped to clean up what 30+ years of competitive soccer had done to the meniscus. That’s what led to my diagnosis… Anyway, I rarely use the cane but it has come in handy during particularly bad flares. I also bought myself a hiking stick, my kids love hiking on our vacations and I thought it might come in handy. It is made for serious hikers and it cushions impact. I have not had a chance to test it out, neither hiking nor flaring… I do have a Handicap Tag for my car. My Rheumy recommended it and I reluctantly agreed to applying for it. It has saved me many times. There are days when parking up front allows me to be mobile enough to do whatever shopping is needed. Had I parked way out from the store, it would have taken everything I had just to get in the door. A couple of weekends ago, I took my family to Comic Con International. I was able to find parking because of it and so the family joke now is that the Silver Lining for my RA is decent parking. Heh…
How has living with RA helped to improve your life?
That’s an easy one. It has helped me raise my kids aware of Life. Life isn’t always easy, but I truly believe that it is what we make of it. I always preached to my kids that we aren’t victims… that things don’t happen to us, that we make things happen… RA gave me the opportunity to lead by example. It gave me the opportunity to be a better me…
My very devout Catholic mother told me when I was diagnosed, that this was my chance. God was giving me the chance to show who I am. To become a better me… She told me that RA would either make me Bitter or Better… She then took a long look in my eyes and said “I don’t see Bitter in there…” And so I strive for better every day of my life…
Do you have any visible signs of RA?
My right hand has some deviation. My fingers don’t all point in the same direction anymore. But unless I show you and point it out, it isn’t all that noticeable. I just refer to it as my Quasimodo hand.
Can you please describe some of your favorite coping strategies for living with RA?
Emotionally? I’m not sure. I’ve never had a problem accepting my RA as part of my new “normal”. I do find that I am more emotional. My emotions seem amplified most days. I’ve been told that it’s not unusual but I am not sure if it’s RA related or not. I could just be getting old. Heh…
Physically… When I feel worst, I just continue my life as usual. I keep moving forward. I find that I can’t stop. If I am home, I do laundry. I keep myself distracted with a good audio book or podcast on my ipod, and I keep moving. It’s almost a compulsion. Weird?…
Can you please describe your current medical (traditional and alternative) treatments?
I am on Plaquenil, Arava, Meloxicam, Omeprazole and Simponi. Simponi is the newest and it is a self-administered shot. I was told it was a Pen and I was shown how to use it. Then there was a recall on the Pen and I was sent a syringe. That is something I am just now, after 5 doses getting used to. Doesn’t hurt exactly, but I find sticking a needle into my own thigh a bit disconcerting…
I have also changed my diet. I have completely taken Gluten out of my diet. It turns out I am allergic to it, so one of my dr’s thought it was a bad idea that I stress out my system eating it. I agreed, so it’s out. We (my wife, kids and I. They decided we are a team in this) have added lots of fruits and vegetables to our diet and cut back in all processed foods. Also, we have cut back on red meat. I only have it once a month or so. This was a recommendation from one of my dr’s as well… These changed were much easier than I had originally feared. They have also had a positive impact on how I feel and my energy levels as well…
Is there anything else about yourself that you would like to share?
The only thing I have given up in my life so far has been playing competitive soccer. It’s something that I was probably getting close to doing anyway. I was not liking the fact that I had reached a stage where I was no longer the best player on the field. Now I have an excuse. Heh… But seriously, I believe it is very important that I not let RA dictate who I am, what I do. Yes, it restricts me to some degree, some days more then others. But other then that, I refuse to let it define me. I still coach my son’s teams. I chaperone my daughters’ band trips. I am on the Booster’s Board for both my daughters’ bands. I am active in my son’s school’s PTO. I work full time… In other words, I live life to its fullest. I want my kids to remember ME for who I am and what I did. I want RA to be a footnote. “Oh yeah, and he happens to have RA”… To what extent I am and will achieve this remains to be seen. But Life is the Great Adventure and there are never any guarantees. You get one turn on this ride. Enjoy it…
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