For 7 months I lived my dreams, I returned to Florida to do
what I love. I made new friends and got
to volunteer at my favorite place in the world.
I conquered more half marathons and other distance runs. I went to places on my bucket list and made
my first ever trip to Disneyland and Hawaii.
Of course it wasn’t all rainbows and butterflies and I still was
battling recurrent infections and lupus issues.
There were days where I was absolutely miserable and so done with my FL
life, but overall the positives greatly outweighed the negatives.
Then the lupus issues continued to get worse and soon it
became things I could no longer avoid.
My photosensitivity started to include light bulbs making me sick and
causing fevers and rashes and general feeling of sickness. The pain levels skyrocketed and we ended up
playing the increase the steroid game again.
My raynaud’s phenomenon issues also got much worse too. Of course there’s other issues, but those are
the big ones that stick out right now.
This made me once again make the difficult decision that my
FL dreams had to come to an end. My
lupus dr told me my body needed a break and I couldn’t even argue with him. There’s not much we can do for lupus as chemo
really isn’t an option until I have kidney disease and for now my kidneys are
doing okay. It’s so hard feeling like
your back is up against the wall and realizing there’s not much you can do. That once again due to issues outside of your
control, you’re faced to relegate to life as a professional sick person.
I’ve been in this situation before and I knew what was
coming. I knew the emotions and
struggles waiting for me once I returned home.
I made a plan and thought that would make things easier. I had time to have a final day at work, a
final week of adventures and a chance to pack my apt.
None of this made it easier and if anything it made it even
harder. I knew I was about to hit rock bottom, break and
shatter into a million tiny pieces. I
knew I was going to be left trying to find hope in a situation that is seemingly
hopeless. I knew that once again I’m
going to be clinging onto super glue trying to glue my life or some semblance
of a life back together.
In a week, I’ve lost the life I built for myself, my job, my
apartment, my independence and living near my friends and those friends that
have become like family. I’ve done my
best to prepare myself as once again I journey full time into the world of
specialists not agreeing and trying to pick what is the right course of action
and treatment for me.
Nothing can actually prepare you for the emotional fallout
or the darkness of the days I’ll have in store. I am full of guilt and feelings of inadequacy. This isn’t fair for me neither is it fair
that I by nature of my glitchy body put others through this.
Life is going to get a million times harder before it gets
better. I hope that there are brighter
days up ahead, but I’ve also accepted there’s going to be lots of
darkness. I’m just doing my best to
prepare myself and my body for this impact and I also know that it won’t be
enough.
