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
