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!
I'm new to finding your blog. I'm also a 24 year old girl with Still's Disease. I was diagnosed last August. I have it mostly under control with my medication, but I fear everyday that a flare will come. I pray for the positive outlook you have. I have read all of your posts, and it is so great knowing someone out there knows exactly how I feel. Some things you wrote I think about all the time. I hope the Humira works well for you, and I look forward to your continuing posts!
ReplyDeleteThank you for writing this blog and for being so honest about your disease, Lindsey. I'm 27 and got diagnosed with AOSD half a year ago. Right now I'm off medications for three weeks and feeling pretty good so far (fingers crossed..). It's so comforting to hear from other people, especially women at my age, about having the struggles and sorrows, but also perks and successes, like myself. Your blog also encouraged me to focus even more on healthy eating. It really seems to be worth a try. I wish you the best and hope to read from you soon!
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