For me, I’m the first to admit that I’m an overachiever and
a perfectionist. “Good enough” has never
and will never be “good enough” for me.
I never liked the status quo. I
like to challenge myself, challenge the limits of what is possible and keep on
striving for improvement. This
translates to all areas of my life from lupus life to how I approach doctor
appointments and even how I ended up deciding to tackle a half marathon.
My malcontent with the status quo is what led to me pursuing
and finding another immunologist. If I
listened to my one specialist, I would still be suffering silently with no
answers and nowhere close to finding answers.
He wanted to keep taking on the “wait and see approach.” I could no longer deal with that so I decided
to go on a quest for some answers. This
new dr is actually incredible and she’s just so bouncy and full of life. We were actually laughing in my
appointment. Laughing at my
misfortune, but I’ll take it! You’re
either going to laugh or you’ll be crying and I’m much more team laughter.
She actually wants to take on the challenge that is my case
and wants to find some answers. She
believes I have another disease to add to my ever growing list. That’ll mean another abbreviation, another
fight, another treatment protocol, another whole set of worries and concerns
yet this will also mean some answers.
Reasons to why I keep on ending up in this constant state of infections,
why fungal infections keep on playing in and wreaking havoc on my GI system,
why my immunoglobulin levels are so incredibly low, and why I don’t respond to
medications like I “should.”
At this point I’m stuck.
Do I hope I have another illness as that could bring about some much
desired answers? Do I really want
another incurable illness? Do I want to
best case have monthly IVs forever? Do I
want to keep having to worry about any infection or illness sending me to the
hospital? I’m trapped on this Ferris
wheel of doom and there's no way off. I'm in a lose/lose situation. I
have no idea what I want or what I hope for anymore.
Sometimes I almost find myself hoping I have this illness as
then maybe starting treatment for this will help my constant state of
infections that I’ve been really struggling with. I’m tired of struggling, I’m tired of all the
puking and barf buckets. I’m tired of
everything making me nauseous even with anti-nausea meds. I’m tired of the fact that I’ve learned to
master the art of car puking and puking on my runs.
Yes I’m tired of all this crap, but at the same time I’m not
ready to give up or accept this as my new reality. Most people would accept this and try to move
on, but that’s not me. I’m going to keep fighting, keep seeking answers and
keep doing what makes me happiest. If
that means that I’ll master the art of run puking then I’ll do it. I have half marathons to run and if lupus won’t
stop me than neither will this.
My current discontent with this status quo-dom has also led
to me wanting to become a voice and an advocate for change especially when it
comes to the lupus world. In the past 50
years, only one drug was approved just for lupus. That drug has failed for me and most likely
induced a cancerous precursor (hello another abbreviation and my dear friend,
M-GUS) so every day I pop pills that were designed to treat organ transplants
and cancers. These drugs come with awful
side effects, but then again that’s the cost of staying alive. That is unacceptable. I will use my story and use my running of
halfs to spread awareness for lupus and raise money for research.
No comments:
Post a Comment