Tuesday, April 12, 2011

My Brother's Tattoo In Honor Of Spondylitis

March 10th, 2011 started out terribly, but ended on the best note.

In the morning I went to the hospital for my most recently monthly Orencia infusion.  I'm usually there for about 3 hours: 45 minutes to get the IV set up, 45 minutes to get an IV dose of Benadryl (a precautionary measure because of my reaction to Remicade last year), 40 minutes of Orencia, and 30 minutes of Saline at the end. However, on this day it took over an hour and a half to get the IV in. Apparently I have the world's worst veins; I swear I can actually see the nurses scatter when I sit down for my treatment. Let me tell ya, it really makes a girl feel confident ;)

Although the infusion itself was pretty comfortable, I began having a coughing fit, chest pain, and suddenly felt like I had the flu as soon as it was over. While on an immunosuppresant drug like Orencia, anything in the chest can be dangerous, so I got an EKG to rule out all the scariest reasons for chest pain. As soon as I got the "OK" from my doctor, I was good to go. The ordeal took nearly 6 hours, but I was glad to have another dose in my system.

I'm not typically up for much more than a long nap after "infusion day", but I had some amazing plans that night! I headed to Brooklyn to meet my big brother Josh. I wrote last month about my brother's amazing gesture - deciding to tattoo the words "Stand Tall" (the slogan for the Spondylitis Association of America) on his arm to show his constant support of my health.  It blew me away and I assured him that, even if he changed his mind, the idea alone already meant the world to me. That night we ventured to Brooklyn Tattoo together (a place that had gotten rave revues). We were kind of like ducks out of water and it took a while to figure out the placement of the words.  Eventually it came down to a literal coin flip and we decided it looked best diagonally on his forearm. I could tell he was nervous and that the process was painful, but also just how sure he was of his decision. I told him how brave he was being to which he replied, "This coming from the girl who spent her day in the hospital? I'm just really glad I can do this for you." 

Doesn't it look amazing?


I don't know if Josh realizes yet just how deeply this impacted me. I will always be able to look to those words as tangible gesture of his friendship, empathy, love, and undying support. It means the world to me and so does he. I'm pretty sure I have the best big brother out there...don't you think?
Love,
Maya

14 comments:

  1. Hi Maya! Liza checking in here. Just read this entry -- so beautiful! I've been up late (many nights) trying to figure out which tattoo I want to honor the Mb4M journey and the continued quest to dodge cancer. This is so beautiful, and it looks great on Josh!

    PS reading this while one of your old classmates sits across from me (Randall Phyall). You got a new blog fan :)

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  2. josh-you are AMAZING.

    also, maya never forget how lucky you are to have the wonderful support of your parents, john, his family, and your entire extended family. not all of us are that blessed, but i am so happy you are!

    xoxo

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  3. How sweet! What an amazing brother!

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  4. I have been off of the blog reading radar for a little while. What is the infusion purpose. Would you email me and give me the details? Or maybe explain in a comment on my blog? Thanks

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  5. that is so amazing. well done, josh.

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  6. Wonderful and touching, Maya and Josh. Bravo!!!

    Ruth

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  7. incredible! you are very lucky to have such a wonderful relationship with your brother. way to go, josh!!

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  8. your brother is just about amazing as you! a relationship like that... very cool!

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  9. This is really beautiful and makes me cry.

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  10. You have an amazing brother! I bet he would do even more than that to see you healing. ~ Peter, HealingWell.com

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  11. Thank you to everyone for your thoughts about my awesome brother. I count my blessing every single day...

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  12. That tattoo is amazing. And for the record, I think you have very pretty veins :)

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  13. I'm planning to do this in honor of my twin brothers chronic illness when I turn 18! I'm not sure what to get just yet... He has chronic migraines and I want something that reminds me of our childhood or like our relationship.

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