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

Ah HA!

The school year is over and I have graduated my Master’s degree program! Yipee! I am now officially on the job hunt… it’s the worst!  Haha But seriously, the worst. Now, here comes the obligatory “bad blogger” statement, yet again. I haven’t forgotten about MMSD!! In fact, I started writing two blog posts since my post in April but haven’t been able to finish either.  I will do my best to do that here. The first section/post addresses a question I found on Reddit!

When/do you tell people about your autoimmune disease?

Inspired by r/autoimmunity where I saw this question…

Honestly, this is a question I have wondered about myself as well! Because of Me, Myself and Still’s Disease I definitely have felt more empowered to talk about my still’s.  …But, in my opinion, I don’t wish to start my relationships with acquaintances, friends, or friends with potential (wink wink) by leading off with, “I have a rare not-well-known autoimmune disease called Still’s Disease”. Seems a bit weighty for a study group conversation at the campus Starbucks, agreed?!

Now, that’s not to say that the conversation of my still’s hasn’t come up in unexpected places in unexpected ways because occasionally, the topic just seems to bubble to the surface! One day in class I felt the first (most outer) joint on my left middle finger (weird, right?!) beginning to hurt and within half an hour, one side of the joint was bright red and bulging out… yeah, no bueno! Needless to say, my girl friend asked me what was up. I recall saying something nonchalant like,  “I have arthritis.” Those of us with still’s or autoimmune diseases know, there’s plenty more where that came from! Haha At least that comment is manageable and gives people a frame of reference for a future conversation.

For a few years after I was diagnosed I cried almost every time I got into a deep enough discussion with someone about my still’s. Explaining the wrench that still’s had seemed to throw into my life when I was just 17 years old was a lot to relive for me… which leads me right into the second post I felt I had to address on MMSD…

The Pity Party

Certainly I try and live my life with as much positivity as possible but I’m human and one day last month I just had a… flare, if you will.  It was the Friday before Memorial Day weekend and I went to my community pharmacy to pick up my Humira refill; only to be told that there was no refill, as the system showed no call-in. With no pens left for the upcoming week, this event made me think about how dependent I am on my medication.

After figuring things out with the pharmacy, I drove home and thought long and hard for the first time in a long time about where I was and where I am with my disease. I called my boyfriend and, thank goodness, got his voicemail where I left a short but teary message about how I still wonder… why me?!

Here we are! Someone call the fire department ;P

Certainly this is a common question for many people when tragic and unexpected situations come about. As far as the great, miraculous and mysterious human body goes, I’m certain many things are inexplicable even when they are explainable. I don’t know why God allowed/allows me to have still’s disease. Thankfully though, I have a strong faith and supportive family and friends. I believe that everything happens for a reason. You may not know who or how you’ve touched people but I believe that everyone makes an impact.

Now, off that pedestal and back to the drive home, I knew I needed to just “cry it out” as I tell my friends.  Getting Marvin’s voicemail was just what I needed but I’m going to sidestep for a second… when he called back he said something so sweet and genuine that I have to share with yall… He said, “Honestly, it (the voicemail) made me smile… because I’m someone you want to confide in. I want to be invited to all your pity parties.” *Gush gush gush* Isn’t he the cutest?!

Anyways, I’m not saying it’s easy, because it isn’t. After all the tears, I reminded myself that nothing would be accomplished by feeling sorry for myself (although I also say feel free from time to time to “cry it out”. It’s a healthy cathartic release, I think! Haha) Again, I digress. I saw this very piece of wood the other day and it’s been on my mind ever since…

It is true! We cannot continue on if we focus on the past… but! I would make a footnote to this saying/quote/phrase and that is; Even though the next chapter cannot be written if you are still reading the last, chapter 15 is undeniably built upon the first 14 chapters. It is your choice whether you choose to reread the previous ones or acknowledge their presence and move forward. I choose chapter 15 :)

Alright, I’ve exceeded my prophetic moment quota for this post, it must be time for me to close out! Hahaha Hope y'all are having a wonderful summer thus far!

¡Año nuevo!

It’s 2013!

… and I’m definitely a few months behind. Haha

Rodeo (February 2013)

1^st off! Thanks to all my readers who have stuck with me despite my spotty blogging. Since my last post, I traveled home for Christmas and spring break, completed and started a semester, took a small vacation to visit my boyfriend (who graduated from Army basic! Yay!) and am on track to graduate with my master’s degree this May!! Woot woot!

Now, I know you’re most likely not coming to Me, Myself and Still’s Disease to hear entirely about my non-Still’s life! Well, you’re in luck.  Lots of changes for me health-wise and it’s time to tell you about them!

Since the last time I wrote I’ve been in and out of visiting with a couple different doctors before I finally was able to see Dr. H after her maternity leave. And although there have been minor changes here and there, this is the current plan of attack:

·     Once –weekly Humira 

Daily

·      3mg prednisone (Dr. H says indefinitely but I have other plans)

·      Calcium +vitamin D supplement (Since the pred is hard on my bones, plus can’t hurt to have some extra calcium and vitamin D!)

·      Zyrtec (pesky seasonal tree allergies)

·      Advair

Synergy 360!

I have been feeling extremely well as of late! As I always say, still’s is absolutely unpredictable. Granted I have always felt much better when I workout on a regular basis and this year, I’ve really made the lifestyle change. I try to eat mainly whole, unprocessed foods and workout 4-5 days a week with a variety of cardio exercise to include Zumba, running and a circuit training workout on a crazy looking piece of equipment! While I have not lost any weight, I have gained muscle and am more toned!

I have also successfully made it into the month of April with no flare!!  *knocks on wood* That’s not to say that I still don’t have days where a few of my fingers or my back or wrists or knees are a bit stiff. Generally though, I consider myself very lucky blessed that I haven’t had any major issues. After all, it was this time last year when all of the symptoms that I dealt with at the beginning of my diagnosis came rushing back.

Still, in the spirit of Easter (Come on yall, it was just a couple days ago! haha)I would like to say that I feel very blessed. I am grateful for the body that God gave me even when I know it’s not perfect. I am grateful for family and friends that support me when I don’t feel 100%. I am grateful that I have access to healthcare that enables me to live my life more comfortably. Finally, I am grateful that I, Lindsey Claire, have ultimate control over my thoughts and emotions, not my disease.

Cascarón fun for Easter!

… Now, back to studying for my comprehensive exam this Friday… Wish me luck!

P.S. Cascarónes are the best!!

What Can I Say?!

With the start of my school semester and the subsequent classes and papers, it’s been easy to put off blogging. Haha (That being said, I have all As right now. Woot woot!!) Plus when Humira was taking care of all my still’s symptoms, there didn’t seem to be much to talk about. The operative word being WAS.

Yup, something has been developing over the past several weeks. The medication seems to be wearing off earlier and earlier. I’m due for my bi-weekly Humira injection tomorrow but I’ve been having a flare since Saturday. My right thumb and left pinky swelled up, my jaw, wrists, forearms, right hip, both ankles and hands in general have been painfully stiff and tender.

Admittedly, I don't think I'll ever get use to a surprise flare like this. It always feels like a huge blow to my confidence in my health. Sure, I would like to say that it’s due in part to the weather change but my gut tells me that, for reasons I can’t explain, Humira isn’t working.  For the last two injections, my right thumb (reaching all the way down to my wrist) has been giving me trouble a couple days before my Thursday injection date. Weird right?!

Since Dr. H is out on maternity leave, I definitely felt a bit lost when a physician’s assistant returned my call yesterday. Nonetheless, I am in the process of scheduling my next appointment, which was due to happen at the end of this month/beginning of next month anyways.  Who knows! Next time yall hear from me again, maybe I’ll be on a completely different medication! Ha!

This is just another reminder that still’s disease can be unpredictable and loves throwing you a good curve ball.  Also, it reminds me that saying why I’m having trouble walking, sitting, writing, typing, eating and/or moving really is much more complicated than being relegated to use the words, “I’m sick”. I know that I’m not contagious and I know there aren’t any visible signs (unless I have that lovely rash) but it’s the quickest and easiest way to say I’m not well.

Oh, I forgot to tell you! I'm a redhead now!

A couple of other quick updates…

1.     I’ve been going to Zumba for the past few weeks and loving it!! If you remember, over the summer Dance Central was my good cardio friend!

2.     I’m always trying to find the positive/humor in my situation. Here’s a couple tweets from last night:

Being forced to walk like a zombie would've come in handy two weeks ago... ‪#arthritisankle

I am Igor. I also just came up with my own theme song, Hobble... with an extra dash of "Hobbledy hobble, ho-ho-hobble, hobbin'" ‪#musicgold

3.     Finally, my boyfriend has been the best about my still’s! He helps me carry and open things when I can’t, he wants to know all about what's going on and, most importantly, he makes me laugh by hobbling with me when I’m walking like a zombie/Igor :)

Have a wonderful week readers!