Doing What You Love vs. Doing What You Can

Doing What You Love vs. Doing What You Can

I got back from my road trip to Denver August 21, completely exhausted and drained yet glad I went on the trip. During the four days I was gone I kept thinking about the choices and sacrifices that I make in my life because of my RA. As I’ve often said before, I’m determined to not let RA stop me from doing the things I love and want to do. However the reality is that sometimes it can get in the way. Or it makes doing those things a lot harder than if I didn’t have arthritis.

Driving 14 hours to Denver and then having to drive many more hours within Colorado, stressed out trying to navigate unfamiliar roads, definitely caused me additional physical and emotional discomfort and pain. My body was sore and stiff from sitting in the car that long and the repetitive motion of pushing my swollen foot up and down on the gas pedal (no cruise control) irritated my already inflamed ankle. It wasn’t impossible though and I did it. But was it worth it? I think so. I got to see the beautiful Rocky Mountains for the first time. I saw a fantastic band (Irish alternative/indie group My Bloody Valentine) perform an awesomely loud, epic show at the intimate Ogden Theatre. I had a lot of laughs with my friend and traveling companion, Suzy. I experienced some excellent live jazz music at a cool, grimy little hole-in-the-wall, El Chapultepec, that’s been around for 80 years. I also sang karaoke with friends in Omaha at 1:00 AM and then had “girl talk” until 3:00 AM while drinking wine around a backyard bonfire (that refused to light) under a gorgeous, brilliantly lit full moon. And I did a lot more stuff, too. I hope this isn’t sounding like a bragging list, because that’s not my intention at all. Sometimes I just have to remind myself that doing these sorts of things are worth it. That the extra pain and swelling and stiffness and worry is worth it. What else am I going to do, lie around in bed shut up in the house never doing anything? I don’t think so. I already feel like I have a lot of regrets that I haven’t done enough in life, experienced enough, largely due to living with this disease. It’s something that I struggle with constantly, and maybe that’s why I keep pushing myself to keep doing as much as I can. Or to not let opportunities pass me by.

But is it “wrong” or abnormal or unhealthy to have this constant drive and fear that RA is going to make me miss out on life? Am I the only one who gets incredibly anxious about this sort of thing? I’m guessing I’m not alone here, but I admit that I often feel alone with this added worry. And I sometimes wonder if having RA makes me attempt unrealistic things or go after unrealistic goals because I have the disease. I don’t think so, really, but it does seem a little suspicious that a lot of my career and personal interests involve physical demands that are often too much to handle while having RA.

Example: I’m currently training to be a wedding DJ. While I love music and interacting with people and I think this would be a fun and flexible job, the reality is that it will require long hours spent on my feet as well as lifting and moving heavy equipment. It’s probably a dumb idea for me to pursue this. But I want to! So, today I signed up to attend my first wedding next weekend to observe the professional DJ and see what it’s like to work at a real wedding. Maybe I can make it work out if I ice and wrap my ankles and take extra pain medications? I want to give it a try at least.

Working as a professional photographer is another career goal of mine. Actually, being a wedding DJ isn’t really a career goal, but just a fun way to make some extra and much-needed money. Photography is something that I’d like to do as a profession — photojournalism, specifically. But again, this job requires a lot of hours spent on your feet while lugging heavy equipment. I’ve photographed a few weddings in the past and the physical toll of that just about killed my poor feet, hands, and wrists. I’ve also done a lot of work photographing events for non-profits in the Twin Cities area. This also required a lot of time spent on my feet holding and lifting heavy camera equipment. But should I give up my photography dreams and goals? I don’t want to.

I also admit that I’m probably one of the worst procrastinators and decision-makers in the world, and I’ve been this way for a very long time. I’m not sure if getting RA at age 18 made this worse or if I would be indecisive anyway without having the disease. Who knows. What I’d like to know is: How do you make smart choices in life? And how do you decide what’s okay to sacrifice while living with RA? If anybody has any good answers to this, please let me know.

Right now I’m in a quandary about if I should hop on a plane to Europe in the next couple months. It’s probably a reckless, foolish idea. But I want to do it. Hmm.

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Comments

View Comments (4)
  • Cat E Gob
    3 years ago

    I have 3 auto ammiumunne diseases,I left my ex to make more for my self 10 years ago to become a portrait photographer i started out doing well and i was getting knocked down hard now and then and thought i should see a Dr ,I found out i had RA i knew i was told i had Fibro but now this and i found out i have ciliac,My fatigue is so bad from all three its hard to do any thing ,but i push my self and i went for three days to photography my cousins wedding knowing it would make me sick and i would do it again ,I was down for two weeks ,One thing i had to give up on and it was hard to do is being that portrait photographer,i still do some but i will never make a living out of it ,that saddens me,

  • Cathy
    4 years ago

    I always worry before a trip or journey comes up. Can I or Cant I do it?? But I go ahead and Plan or do the trip/journey….We just recently went on a 7 day cruise and I had lots of fun, went and walked the islands ect…I did ask for a ride when I got tired and when enough was enough I stopped….Unfortuntely once I returned home I caught a virus that kicked me hard…The trip was great and Ill do it again and again…

  • Janet Lemay
    5 years ago

    Angela! Go do & push! As much as the old “check with your Dr first” thing rears up, I still say go! It’s hard to go- I know…. My trip to Europe in June was exhausting, often blurry- painful!!! But I was living like a Queen in Paris!!! Dinner river cruise on the Seine, up the Eiffel, oh the Moulin Rouge til 3am & ice cream before the sun came up…… I deal with the aspects of Am I making this RA thing get worse?? Playing tennis, jumping huge rocks & roots on my mountain bike- falling, crashing even….. Like you, I refuse to curl up in a warm corner & watch others. So mix you up a cocktail of wisdom & adventure, if it taste good go for it! Drink the juice!!!!

  • Tryin2live
    5 years ago

    I think you should jump on that plane and GO to Europe! I was dx in 2004 with RA and my 25yr old daughter was just dx with MCTD (a mix of many immune dz). She was told she had Lupus,Fibro,Scleroderma, a severe case of Raynauds, and others not mentioned. We live in Ohio and she recently went to a week end long festival completely by herself in Chicago! She took a Megabus, bus lines she mapped outin Chicago and booked herself in a hostel for 3 nights! She has always lived at home and would never had done things like this before her diagnosses. Her new life philosophy is, I want to do ALL the things I can while I still can! No Regrets! So…I SAY…JUST DO IT!

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