Everyone tells me I look like my mom but have the persona of my father. And I love that. My love of books and words comes from my dad. He showed me how reading can create a new world for yourself within different pages, and to look deeper into the illustrations of my picture books to find hidden things that the artist put there that you might not notice on first glance. I still find myself looking deeper when I go through my old children’s stories, looking for what the little piggies have in their hands, or what King Bedgood has in his tub (OH who knows what to do?!). And I love looking deeper into the words, and deeper into things that happen into my life. There’s always a hidden message, or a message that you might not see clearly if you aren’t looking in the right place.

When I was in the hospital, my dad was there almost every day, sitting in the uncomfortable chair, trying to work, trying to keep it together, praying, and trying to answer questions that were neither of us knew the answer to.  Why was this happening? Our family doesn’t have any history of major illnesses. Sure, life may have been a bit challenging at times, actually I’d been through a lot growing up. But being sick, really sick, wasn’t something we went through. Why was this happening to me? Why couldn’t we fix it? What’s the hidden message?

I’m still not sure what the message is. My hope is that my story and my journey through this disease will lead me on a path that will allow me to help and inspire other people to enjoy their lives and live with joy and thankfulness. To show that there is hope and beauty in the breakdown. Maybe it was to bring me and my family closer to God. These just aren’t questions that have obvious answers. And we might not find out why for a long time, if ever.

Anyway, when I was in the hospital on my birthday, after my blood transfusion and when we were waiting to find out what happens next, my dad wrote a post for me for World IBD Day because I wasn’t feeling up for it that day. I want to share it with you now though. Happy Father’s Day Dad! You’re the best. I’m proud to be your daughter.

Today, May 19, I celebrate World IBD day. Maybe celebrate is not the correct word for those afflicted, maybe honor is a more appropriate word selection. It has only been in the last couple of months that I became aware of World IBD day being on May 19^th, a date that for the past 26 years I had celebrated as the birth date of my daughter. Today we sit together in the hospital. She has been here since Friday having been readmitted for Prednisone IV treatment in an attempt to put her Ulcerative Colitis into a manageable state. This is our second trip here in the last two weeks. The first weekend was unsuccessful. Her response to oral prednisone had not been what we had hoped either, so they admitted her for IV to see if that would work better. The first trip resulted in the discovery of giardia, a nasty ass intestinal parasite, which required additional medication in the form of flagyl, an equally nasty ass antibiotic originally designed to make alcoholics violently ill should they choose to drink again.

 

Her treatment plans seem to change almost daily. Right now we are on course for remicade after she is released in the morning. Remicade had been the plan as of last Thursday afternoon, but then twenty minutes later the doctor called and said she wanted her back in the hospital under the guise that the giardia may have been inhibiting the pred from working the way it should. This morning they tell us that the real purpose was just to get her stable enough to be able to handle the remicade. Her initial approval for remciade was denied due to an “inconclusive TB test”, which came as a surprise as she had not been given a TB test. We later found out that they did it from her blood. An additional, traditional test was done over this weekend and it also came back as inconclusive due to the fact that her body is unable to establish a baseline due to the improper behavior of her immune system.

 

This shit is no joke. While we sit here and I write this she is delivered flowers from co-workers. The flowers are purple roses and I doubt very much the senders know of the significance of purple to the IBD community. I know I didn’t.

 

So anyway, she has been in the front car of this rollercoaster train ride of treatment plans – remicade/pred iv/imuran etc. , blah blah blah, and I have been pulled along in the back car. I asked her if she was going to post today for World IBD day and she wasn’t sure, so I asked if she wanted me to do a guest post. Maybe offer a different perspective in hopes of spreading more awareness in honor of today, and in celebration of her and her birthday. Everything I have written above seems a bit scattered so maybe its better to leave you with the following that I wrote this morning.

 

My daughter is sick

she has a chronic disease

and today is her birthday

For her birthday she is getting

Remicade and I want to

sing its” praises like Eddie

Murphy does for lemonade

but it is too soon

she may not even get it

her doctor has changed

course many times before

and then there’s the issue

with TB and the inane

practice of having to

be dismissed and re-admitted

to receive treatment

something you never see on

House or Gray’s Anatomy

Yesterday she was given new

blood and has spent a third

of her bir-month in the hospital

and most of the rest bedridden

UC – Ulcerative Colitis

say it out loud because it is

real and real scary

I have moments when I am

alone and fighting

tears every day

but I am not

alone nor is she

this is our disease

not just her

and I and her

mother and her

family and her

friends old and

newly discovered

from sharing their stories

of flare ups and hope

pain loss inspiration purpose

trust faith courage

all the variations of strength

helping one another while

the medicine tries to catch up

there is no cure

her body

attacks itself

bleeding is constant when she moves

her bowels enflamed

her diet strictly limited

to reduce potential

causes of flare ups

which remain uncertain

every morning I am guilty

of having regular and

normal shit

which I take for granted

or used to

catching myself in denial

rationalizing, searching

for answers whose

only question is why

WE don’t get sick

WE come from superior genes

is this karmic retaliation

is this God’s way

to bring me closer

to bring us closer

I’ve taken to more prayer

but fear I am not

very good at it

my mother is expert level

praying the Novena which seems

like a chain letter

or the Pope’s facebook post

but still I want to try it

try anything

I’ve always thought it

selfish to ask for favors

in prayer other than

blessings or thanks

forgiveness

so now I am

selfish as I pray

pray that Morrison was wrong

start a petition

solicitors welcome

and its selfish to even thin God

would use her to reach e

yet here I am

still wanting to know

yet knowing I can not

fighting back

hard against the tears

emotional overload

keep backing it up

you haven’t earned it

save it for the joy

so I hold off

as if there is some

glory in being last

to break down

 

I remember when she was first born being asked by someone with an unfavorable view of the world how I could bring a child into all of the horrible things the world has to offer, and my answer was that this may be the child that grows up to change the things that you see as terrible – she could cure aids or cancer or develop an economic structure that is fair to a greater number of people. Now, when treatments fail to work, I wonder if something will be found that will work for her that be beneficial for other’s as well. Not that I want her on anything experimental, but you keep looking for silver linings. And I will settle for any treatment that works even just for her at this point – selfish again. The point here is that those behind the world IBD day are pushing for awareness. It’s a tough push as so much is misunderstood, and generally dismissed, about these diseases as many just presume it is IBS and do not realize the extent of the suffering. People ask me with real concern how my daughter is doing and it is tough to give an understandable answer as she presents as fairly normal most of the time,  but if they were to see her stools they would be horrified. There’s a long way to go but I hope in some way this can help spread the word.

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