Wednesday, April 17, 2013

Epiphany, Or Too Much Wine?

I've been a recreational runner for almost 20 years.  I didn't start until I was in college.  I was always in good shape, but usually opted for aerobics, step classes, and a Stairmaster, and I had a short love affair with the Reebok ice-skating slide thing.  I can't remember why I decided to try running, but I did, and I still love it (most of the time!).

To the contrary, I've been a rheumatology patient for only seven months.  Once the bloodwork was drawn, the diagnosis came quickly, albeit after 5 years of wrist pain and a resulting surgery.  Overnight, I transitioned from a girl who was training for a marathon to a girl who needed a pillbox.  (Note: I decided I will start referring to myself as a woman when I hit 40.)  That first appointment with my doctor was a lot of listening while trying to keep the directions for the meds straight; I realized later that I didn't ask a single question.

While I still feel like I am settling from the bounce of learning I have a chronic illness, one of my earliest frustrations was searching for information for runners with RA and not finding anything of substance: nothing about managing side effects while logging miles, nothing about being concerned whether or not hard efforts would cause my misbehaving immune system to rebel further, and, most importantly, no commiseration for those of us who consider ourselves to be athletes but felt like nothing of the sort.

This past Monday, April 15, 2013, I went for a run in a local park.  For reasons related to both RA and non-RA issues, my running has been sporadic since I found out about the RA this past September.  But the day was nice, I was feeling good, and I wanted to RUN.  It was short, only 2.5 miles, but it was enough to have what I thought was a landmark mental moment.  And the following text to my husband, Sean, ensued:


I'm still a little amused that apparently we had an entire conversation about this that I don't remember.  I even thought I came up with the name while running.  I'm not much of a drinker, and it doesn't take much for it to go to my head.   :-)

Then... I came home, showered, cleaned around the house for a bit and turned on the TV... and saw the images from Boston.  I was chilled as my mind immediately recapped all the times Sean and the kids have waited for me at finish lines, and I was stunned by the time on the finish line clock: 4:09.  That's the sort of runner I am right now.  About 9:45-10:00 min/mile.  That's the marathoner I was training to be for the Steamtown Marathon last year before I decided that the wrist pain was just too much.  Like Americans everywhere, I turned into a puddle of tears.  Not just for the victims, our country, our kids, our neighborhoods, our schools, but also for the running community.  Events will never be the same, organizers everywhere will have new considerations, and runners will always be wary.  Or, maybe not.  Maybe with time a sense of normalcy will return.  We can only hope.

I take my methotrexate on Tuesday nights before I go to bed, so Wednesdays are usually pretty crappy for me.  Like every Wednesday since September, I opened my eyes this morning to the oppressing, familiar nausea.  Like every Wednesday since September, Sean asked upon waking, "How are you feeling?"  Like every Wednesday since September, I got the kids fed, dressed and off to school.  The one thing I haven't done yet since September is to try to run on a Wednesday.  I've done some lazy, easy swims a few times, and while it never went well, I was just determined to do something in addition to concentrating on not puking.  Despite feeling like a mess, I felt a deep need to try to run today.  So I did.  It was only a labored, slow two miles, but I ran.  And while running, I decided that it didn't hurt to give this blog thing a try.  As I slowed to a walk approaching my driveway, I took a deep breath, happy to have done it, and grateful for that fresh, clear-lung feeling that seems to last all day.  On a less picturesque side note, I did end up puking a little later in the day after a dumb attempt at a bowl of Frosted Mini Wheats.  It was the first time I got physically sick from the meds, but at least I ran!  Next Wednesday I'll just stick with the usual chicken broth!

If you are a runner with rheumatoid arthritis or another autoimmune disease, I'd love to hear how you manage the side effects of the medications and the challenges of the illness while continuing to be active.

Thanks for reading!

~Lori







8 comments:

  1. Keep up the good work, Lori!!!

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  2. Thanks for sharing! I don't think I was fully aware of the issues you were dealing with when you dropped out of the marathon last year. It sounds like you are getting to a good place with your attitude and running. You should add the option to let readers follow you. It will make it easier for people to find your site again.

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    1. Thanks, I'll have to try to figure out how to do that. I thought it was at the bottom of the page. So new at this. :)

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  3. aww, lori! I'm writing this on a wednesday, so hoping that you are hanging in there!
    you are an inspiration. and now you can inspire another group : those with ra
    btw, i think that you need to drink more wine:)
    also worth noting, sean replies to your txts much more quickly than bill does to mine;)

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  4. stephanie fullerJuly 31, 2013 at 1:30 PM

    I started running 15 months ago and Saturday I plan to hit mile 200!!! My RA keeps me down at times but I have really great coaches that have helped me along my journey. Hang in there learn your body and when to push you'll find that happy place!

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  5. The only symptoms of RA that I had for years were my legs and/or feet randomly giving out on me and not being able to keep running. I'd usually quit, thinking I had a bad technique or didn't stretch or warm-up and cool down enough. When the pain would go away, I'd restart. The last time I did, I managed to make it to week 10 of a 13 week walk/run program before my calves said no more. Again, I blamed myself. It wasn't until my knees and hands started acting up that I went to the doctor. I was just diagnosed this past summer. I've been told I probably won't be able to run anymore, so seeing your blog gives me hope. I was just wondering though, did your RA also affect your legs, feet, and knees more? If so, how did you get to the point where you could run again?

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    1. You know, it's funny...I had such bad wrist and hand pain for soooo long, before RA was ever on my radar, that I really didn't pay much attention to anything that was happening anywhere else. I was dx last September (so almost a year ago), and I had spent the whole summer training for an October marathon. It finally got to the point where my wrists hurt so badly that all I could think about during my long runs was that pain. But, there were other symptoms that popped up that I thought were really weird at the time, like my toes hurting really badly and my ankles getting really sore and swollen despite not having tripped over anything. I chalked it up to the high mileage I was putting in, but I thought it was strange because they were odd aches, and it's not like I just started running those lengths overnight. I was dx right after I made the decision not to do the marathon, and when that stuff all subsided I just assumed it was because I wasn't running anymore. It wasn't until I went off the Enbrel and my toes and knees started really hurting again (even though I wasn't running due to a disc issue) that I realized that the pain I had last summer was most likely due to RA, I just didn't know it. I've been back on Enbrel for a month now, and, like the first round of it, I've been lucky to notice good changes fairly quickly. No toe pain, and the knees are getting a lot better. Before I went back on it, my knees were getting awful again, though. Lucky for me, my rheum is a runner, and she said to keep running! It's not always easy, sometimes it's really painful, but once I get past the first mile or so, things start to loosen up and I find it really helps with the stiffness. Even though it hurts sometimes, running (for me at least) doesn't make it hurt any worse than sitting still does. I just have this paralyzing fear that if I stop running I never will be able to again. :(I'm adjusting my expectations for myself, though. Right now, until it gets under better control, I'm aiming for my local Arthritis Foundation's Jingle Bell 5K. If the Enbrel works wonders (fingers crossed!) I would really like to do a spring half marathon. I think what Stephanie said is right: for people like us who still have relatively new dx, we just have to find that "just right" place. It's been tough for me to take a step back, because last year at this time I was running about 40-45 miles a week. I bet you can do it!!!! Even if you just stick with a run/walk, that's still really, really great given the crappy hand of cards you're holding!!! Thanks so much for reading and weighing in. I really appreciate it. Be well. xoxo

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  6. Thanks so much for that! Yeah, I spent most of my summer randomly crying about running being taken from me. But I'll work on trying to find that right place. In the meantime, I'm starting two-mile walks again and I find that the most challenging thing is just pushing past the stiffness. Your blog gives me motivation to keep pushing forward. I really appreciate your blog and look forward to reading more!

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