The Important Things

I apologize in advance for the length of this post. Even though I try to keep MMSD posts short, this week (and past month and a half, really) has been particularly jam-packed.  I’ve entitled this blog post because of a few things that have reminded me how precious and important life is.

First and foremost, I lost my grandfather on August 5th. My family and I have been particularly devastated because it felt sudden. He was only 73 years old. With respect to my Grandpa and Grandma, I won’t disclose the details of his passing here, but I will say that it was health related. Because of my own disease, I often think about how my current health and decisions related to my health will affect my life later on. (For example, my feeling towards certain still’s treatment/medications… but that’s a story for another day!) Life is but a vapor.  I will forever remember my Grandpa’s reserved yet playful demeanor, his gap-toothed grin, his ability to play a piano song he memorized in high school, and how he and my grandma taught my sister and I how to play bridge. He was a wonderful husband, father and grandfather and we deeply feel his passing. 

"Shot" served me well

As I’ve said in MMSD before, despite terrible tragedy, life goes on.  Obviously, I don’t mean that in an insensitive way. I mean it in the “take this as a reminder” that our health should be one of the most important things in our lives because our very life depends on it. My family went on our annual vacation to Colorado where the fresh mountain air, beautiful scenery and numerous healthy activities revved me up to recommit to a healthy lifestyle. Not that I have fallen off the bandwagon… well, I did go to a kickboxing class at the YMCA and hurt for two days straight! Hahaha I’m way past due to kick butt in the gym again now that I have no serious gym membership (… which is a total excuse. Ugh!)  Anyways, It’s nice to recommit every now and again. My favorite activity included a 2 hour advanced horse ride! I’m a pretty ok rider, if I say so myself! I can trot, canter, and gallop! My legs and back were definitely sore all that day and the next… me being sore sounds like it’s beginning to be a trend *shakes head*

Lastly, I’ve been dying to tell yall! I got a job! Not just any job either. I’m going to be working on Disney Cruise Lines as a Bilingual Youth Activities Counselor! (Have you ever wondered about the Spanish post titles?!) You can guarantee there have already been numerous Disney songs played and plenty yet to be played! My favorite is Under the Sea… but I have been told that people would prefer if we (the cruise ship and I) stay OVER the sea. Hahaha It has been an incredibly long process, almost two months worth of interviews, references, verifications and the final clearance, a medical exam. I definitely have been concerned about if and how my still’s will play a role in my hiring. I went anxiously into the exam, claimed still’s disease and was simply asked “how’s your still’s going?” Naturally, I responded that it has been going great!

As you may have noticed, I have been doing very well for a while now! I have completely weaned myself off of indocin and prednisone and am only taking the once weekly Humira injection! I saw Dr. H last week and she seemed very excited for me, both with regards to my health progress and to my new job. She did have to write a letter to DCL stating that my still’s is “stable at this time” and she did not see any complications with concern to my still’s.  With concern to my medication on the ship, Dr. H set me up with enough Humira for several months and prednisone and indocin just in case.  (Crew cabins have a small refrigerator and there will be a doctor on board… so maybe I can keep my pens in there?). This job is definitely going to be an experience of a lifetime and, of course, I intend to keep up with MMSD, keeping y’all up to date on the latest (maybe I’ll be better about blogging on the sea than on land! Haha).

I hope y’all are having as Magical a day as I am!

P.S. MMSD has been getting more and more attention world-wide! I feel so very blessed and excited to see that people in every continent (save for Antarctica) are reading Me, Myself, and Still’s Disease. (Notice the new Translate MMSD tab!!) I hope you all continue to find my posts relatable and informative about one still’s patient’s attempt to live a healthy life.

P.P.S. Because I think it’s totally awesome to know where in the world my readers come from, maybe you do too! I’ve been keeping a list but just in case I’ve missed one of you wonderful readers, please leave me a comment with your country! :)

Pakistan, Netherlands, Ukraine, U.S., France, Germany, U.K., Canada, Russia, Australia, China, Ireland, U.A.E., Cyprus, Indonesia, Iceland, Uzbekistan, Poland, Bermuda, Philippines, Macedonia, Sweden, Czech Republic, South Korea, Belgium, Kazakhstan, Norway, Malaysia, Italy, Colombia, Nigeria, Romania, Singapore, Brazil, Albania, Slovenia, Latvia, Malta, Panama, Mexico, Slovakia, Vietnam, Thailand, Ecuador