Life and Living with Crohn's Disease

Life and Crohn's

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Crohn's Lyfe

Granted

Do me a favor: roll back your sleeves, turn your arm over (hair down, veins up), and take a minute to look at your forearm, from elbow to wrist.

arm 001

Run your finger gently across the skin. What do you notice?

I feel the tiny hairs nearly invisible to the eye. I feel the protrusion of veins as I pass my fingers across. The delicateness of the skin–it feel so vulnerable.

Look at your arm. What do you see?

I see layers: larger veins pulsing with blood; smaller veins that become less and less visible the farther they are in the depths of my arm. The connections between the channels, like a mini highway system. I see the muscles on the sides of my arms, but there are no muscles bulking here: rather there are tendons that fire as I wiggle my fingers. Doing so will always make me think of The Empire Strikes Back, when Luke gets his replacement arm and clenches his fist and you see the little mechanics firing.

robo arm

This picture is so complex, so strong, but so, so, vulnerable.The underside of my forearm might not immediately elicit the descriptor of “beautiful,” but it is: slender, delicate, elegant, soft, structured. And utterly breakable, particularly on someone so petite as I.  And, for me, it is one of the most important areas of my body. This seemingly inconsequential area has saved me time and time again. Though I have abused it many times over the years, still it remains relatively unblemished, save for a few scars here and there and a freckle or two. 

arm 004

Into this portion of my arm, I receive my Remicade infusion. Remicade is my liquid gold. I have a long history with this drug, and since April 2002 I have known life without it for a 5 month period which landed me in the hospital and 25 lbs thinner. I am one of the very lucky few who has been able to go back onto the drug without developing antibodies, and I don’t know where I would be without it.

arm 003

I remember the first time I got Remicade; 24 hours after my first treatment, I started to improve. 4 days after the drain that had been placed 5 months before stopped draining and could be removed. Remicade has literally enabled me to run marathons and go to horse shows after missing multiple days of school, getting my infusion, and being like new. Combined with taking care of myself, Remicade has given me my LYFE. It is the only Crohn’s medication that I am on that I will be able to stay on when Alex and I start trying to get pregnant (and while I am pregnant, should I be so lucky). My infusions are a standing 2 hour appointment with myself ever 7 weeks, something that was so crucial for me while I was still in school.

This arm gives blood samples for lab tests, momentum in runs, bases for planks, a surface for writing while standing or carrying plates, a way to carry my groceries, my handbag. How do I treat it? By jabbing a needle in there and forcing a foreign substance into the very channels it is trying so hard to protect.

Thank you, forearm. I may never tell you this enough, but I am so grateful for what you do and what you are.

Talk to me, Goose.

Pause and really look at your body. What seemingly insignificant part have you been taking for granted recently? What can this area tell you about yourself and how you live your life?

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16 Comments

  • Reply chasingchels

    My feet. I complain about how ugly they’ve become thanks to running and whine when they hurt/prevent me from getting out there, but honestly? When I think of everything they’ve carried me through in the last few years let alone my entire life, I should be thanking them every moment of every day. They let me run and keep up with the boys and my family and friends and dance and get from place to place. They deserve a lot more than I give them sometimes, and I need to keep that in mind.
    Thank you for this post today, darlin. It’s beautiful, heartfelt, and unique just like you! I’m glad that you’ve found a drug that makes crohns livable and will continue to do so for years. My mum has it, too, so I’ve seen in action. Not fun by any stretch of the imagination, so I’m very happy that you have something that works!

    December 2, 2013 at 8:25 pm
    • Reply SuzLyfe

      I didn’t know that your mom has Crohn’s! I really hope that she is doing well–what is she on?
      I love that you mentioned your feet. Especially for runners, feet are our bane and blessing. My “trouble spot” are my tendons, and they can fritz on me for absolutely no reason at all. But I have learned to turn them into moments of connection, too–I have Alex work on them for me, and it gives us a chance just to be and connect. Plus it’s cheaper than paying for a massage! But I think that learning to be thankful and to see the little things for how important they are (like the fact that even our toes can change the way our feet fall!) contributes to a self awareness that makes us stronger runners and people.
      Hope that you are feeling better!

      December 3, 2013 at 2:48 pm
  • Reply Nippy Noodles #MIMM | SuzLyfe

    […] Remicade infusion on Monday started the week and the holiday season off to a marvelous start. Having just seen my […]

    December 10, 2013 at 9:17 pm
  • Reply Treat Yourself Tuesday: Finally, a Day OFF | SuzLyfe

    […] 1) First and foremost, REMICADE. GIVE ME YOUR DRRRUUUGGSSS. And a little reminder to be thankful. […]

    January 21, 2014 at 3:57 pm
  • Reply Pin It Party! | SuzLyfe

    […] Thankfulness for the Little Things […]

    January 30, 2014 at 5:11 am
  • Reply What is Black, White, Pink, and BA all over? #FFavorites #strangebutgood #recipefriday | SuzLyfe

    […] A gift that I will never take for granted. Also, all of the candy that I stole from it hahahahahaha […]

    May 2, 2014 at 6:38 am
  • Reply txa1265

    I love this post – it is sad that you have to deal with this so young, but wonderful that you have found a way to allow you to so fully live your life and enjoy so many things and hopefully even have children in your future.

    These little things that keep us going … for me it is Synthroid – just before we moved out to Corning NY from Mass my thyroid ‘died’ and was picked up in the final physical with my old doctor … and getting on the medication has changed my life. Now I am in the best shape of my life, and I like to say I’m younger than I’ve been in 15 years 🙂

    As for my thankfulness – while the runner part of me would say legs or feet, I have to go with heart. I’m the only one in my family who hasn’t had either a heart attack or open heart surgery, including my brother who nearly died last April with a severe heart attack (fortunately it happened at Spin class with a doctor next to him and nurse in the room). I’ve had full workups done and I am thankful for a heart that powers me through every day and lets me run 50-60 miles per week.

    May 2, 2014 at 11:37 am
    • Reply SuzLyfe

      Wow, so powerful. Thank you for this response, and there is so many feelings that it stirs up–my first comment is that it is always amazing to me how one seemingly little thing, one little number, one little gland, can transform us, for better or worse. So many people are so “sorry” that I have to have Remicade done, but I would be far more “sorry” if I didn’t have it. It, like Synthyroid, has enabled me to be who I am, and to look to a true future, rather than hanging on day-to-day. Those of us who have these chronic conditions see the world in a way that only others with chronic illnesses can understand. And then, when we fit that sweet spot, that way to take care of ourselves that enable us to live an incredible life, we start to let go of the fear, and we accomplish the seemingly impossible. I love your thankfulness for your heart. Ultimately, even as runners, we have days where our legs take a break, but our hearts beat on. Thank goodness your brother is ok. And you should be so proud of yourself (and your heart).

      May 2, 2014 at 2:04 pm
      • Reply txa1265

        Thanks for the great reply – I look at my thyroid condition as a learning lesson.

        I look at myself as being very lucky – I’m 48 and never had a broken bone nor more than an overnight stay in the hospital, and even then my last was in 1982! So my basic health has always been good – suddenly finding myself at the mercy of my thyroid was humbling and instructive.

        May 4, 2014 at 5:15 pm
        • Reply SuzLyfe

          I can imagine. Thank goodness they figured out what works for you, and that you have such a solid and thankful attitude. Definitely admirable.

          May 4, 2014 at 5:25 pm
  • Reply Candid Camera and 9 Loves--Friday Favorites | Suzlyfe

    […] 5) This little body of mine. It gives me everything that it has–Hell, triumph, and contentment. I love it for the lessons that it has taught me, and for the battles it has fought on my behalf. I try to take the best care of it I possibly can, and I always hope it will return the favor. It may be a lemon, but it is mine. […]

    June 6, 2014 at 6:21 am
  • Reply First #FlatsFriday and Five Friday Favorites | Suzlyfe

    […] a text that Alex was coming for lunch Wednesday, if that was cool? And he was like, um, duh. I have Remicade next week, and that is fine. You guys know me, I will get my work done (and believe me, I have). […]

    June 13, 2014 at 5:31 am
  • Reply Hug A Doctor And Coconut Bacon #ThinkingOutLoud - Suzlyfe

    […] had Remicade on Tuesday (and came home to find out that Alex hadn’t even gotten to eat during his shift), […]

    October 27, 2014 at 2:28 pm
  • Reply Suzlyfe's mommy, clare

    I just reread this post and, as it always has, it reinfused ( not meant as a pun, but it is one) me with hope and joy. Yes, that little arm and the liquid gold of Remicade, work so hard together, to take care of you.
    I will always remember that moment in the ER Scottish Rite when wonderful Dr. S looked at you and then at me and said that you needed Remicade. You did. I hope you always will have this liquid gold to keep you going susiestrong!

    February 3, 2015 at 10:53 am
    • Reply suzlyfe

      #suzstrong. I like it. Now let’s get you some of that goodness too, please (in whatever varietal you need)

      February 5, 2015 at 4:42 pm
  • Reply Suzlyfe's mommy, Clare

    “Suzstrong”–we have a winner

    February 5, 2015 at 7:01 pm
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