Its been over a month since ive blogged. The summer has been
so busy and gone so fast. I have to
start this post off on a negative note. Most of my Cleveland friends have
already heard that there was an armed robbery at a beloved Cleveland heights
restaurant. During this senseless act of violence the owner was shot and
killed. My little sister worked at the colony for years and considers her
co-workers a second family. This tragedy has affected her tremendously and my
heart breaks for all involved. When I first heard of the shooting my initial
reaction was sadness. Sadness for his family, the community, the restaurant,
the employees, but I also felt sad for humanity in general. I cannot begin to
fathom how a human could take another humans life for something as trivial as
money. I also felt sad that I couldn’t find the words to explain to my 19 year
old sister why people like this exist and commit such heartless crimes. As the
days went on and the cowards were arrested my sadness turned to a burning rage.
This happened minutes from where I grew up in a place that I went with my
family countless times. These “boys” decided that on a Monday afternoon they
were going to bite the very hand that fed them. I say that because one of those
involved was no other than a colony employee who was given nothing but chances
from the very man who was shot and killed. I know stuff like this happens
everyday all across America but for many reasons I felt very emotionally
connected to this incident. My faith in humanity was restored when a gofundme
account was created by a member of the community to support the employees who
no longer had income because of this crime. In less than 24 hours some $30,000+
was raised, with much more to come. I encourage all who haven’t seen it to check
it out and donate whatever possible, every little bit helps and I can vouch
that these employees are the real deal. This makes me so proud of the community
that I came from and will always call home no matter where my current address
is. I cant wait until the doors of the colony re open.
I have found a recent perspective in my life in the past
year. I really feel like I grew up a lot and learned not to sweat the small
things. Those who know me know that I am a super high stressed person who often
lets the small things bother her. With recent events in the last year I have to
just look at the big picture and realize that despite all my problems, they are
only touching the surface of what others go through.
June was an amazing month for me and it flew by in a flash.
We celebrated my birthday by going to see Wicked on broadway, something ive
wanted to do for the last 10 years. I also got an unexpected birthday present
when the Rangers made the Stanley cup finals! We spent many a nights screaming
at the TV watching the underdog rangers get there. I was fortunate enough to
get to take a trip out west to visit my cousins and my aunt. I absolutely adore
my California family and despite the fact that we only get to see each other
every 5 years or so, the second I got there it felt like I never left. My
cousin Bijan and his wife Panoo have the most adorable daughter Portia who I
could have packed in my suitcase and stolen she was so cute. The trip was a
much needed relaxation period away from the stress that the city brings. Its
such a different way of life out there . I spent my days going to vineyards,
feeding new born cows, playing with baby goats, enjoying nature and the company
of my family. I wish River could have been there to experience this trip with
me but were definitely going to plan a trip out there next year.
Medically speaking this summer had been pretty rough, but
ive done everything I can to not let it bring me down. Unfortunately, I did not
respond to the cimzia that we started in the beginning of May. This was
essentially the last drug in this class of drugs and with its failure brought a
lot of question marks about what would be next. At this point, another surgery
is one of the possibilities, however it is the exact thing we are trying to avoid.
Because of my prior surgery and the location of my disease, another surgery
would almost guarantee that I would have a colostomy bag for the rest of my
life. This is obviously a very bitter pill to swallow and I would like to avoid
it at all costs. The other option is basically a newly FDA approved medication
that is for patients who have essentially exhausted all other options. I fall
into this category but the issue was going to be getting it approved by
insurance. This drug is called entyvio and its very hard to get your hands on.
The Cleveland Clinic doesn’t offer it yet and although Mt. Sinai is able to
prescribe it to a select few patients the hospital itself doesn’t have the drug
and has to send patients to one of the few infusion centers in the city that is
cleared to administer it. I just found out that it was approved for it and I
have an infusion scheduled for this week. At this point I’m extremely
optimistic about this drug working because its structured much differently than
anything else ive taken. That being said, however, Im sleeping with one eye
open because at this point I realize how few my real options are. Because of
the severity of my case I was able to get in to see the “top dog” of crohn’s
doctors in NYC. This doctor is going to head the new gastro department at Mt,
Sinai and worked on numerous research including finding the gene that is linked
to crohns disease. He is kind of a big deal. Please cross your fingers, toes,
eyes, arms, legs, and anything else possible that this treatment works for me!
This weekend is my one year wedding anniversary and River
and I celebrated by renting a cabin in the catskill mountains for the long
fourth of july weekend. The cabin is just what we needed. I didn’t think it was
a real thing that people could get no cell phone service but that is just how
far in the middle of no where we were, and it was perfect! We did drive about a
half hour to get service one day because river needed to know the world cup
scores and for some reason we had a feeling lebron signed with the Cavs…whats
wrong with us! The weather at first was a bit questionable and cold, but as the
trip went on the sun came out and we were able to enjoy all that nature had to
offer. We did some swimming, hiking, star gazing, had a fire and just in
general relaxed. The dogs are going to sleep all week because of how much
running and swimming they did, ive never seen them happier.
River has officially sat for 3 of the 4 CPA exams with the
last one coming at the end of August, hes been busy at work but still finding
time to play on his firms kickball and softball teams. I have also been busy at
work with my buddy Jonah. Weve been loving the summer weather and spend most of
our days outside…what could be better?
Next month my mom and kyra are coming to visit and I cant
wait to show them the craziness that is my life. Hope everyone is having a
great summer! Don’t forget to tell those who are important to you how much you
love them…life is too short.
Good luck with your treatment.
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