New Year, New Me?

I've always been someone pretty comfortable in my skin.  I've never cared about my thick thighs or double chins.  I've never been skinny, but I never felt ashamed in a bathing suit.

However, chronic illness often makes you feel like you don't know your own body.

I haven't been able to ride my bike in fourteen months.  482 days.  I can't even explain how trapped I feel without my bicycle.  I can't explain the sense of feeling trapped by bus schedules and the limits of my body's ability to walk more than a mile.  I haven't been able to work out in more than a year.  I can't explain how out of shape, flabby and gross I feel.  Part of it is just feeling ill.  But my strong muscular body is turning to fat and I hate it.

I can't see properly anymore.  Sure, I can read, and I have vision well enough to get my license back.  But my vision is forever permanently altered in a way that I hate.  I need glasses for both up close and for far away now.  I feel trapped in my eyeballs.  It's sometimes reported that Monet put off his cataract surgery and he hated his vision after he finally had it.  I understand completely, Monet.  The water lilies look like shit now and I hate it.

My hair is curly now.  I had the straightest finest hair, the kind of hair you could leave the house without brushing.  It airdried quickly, usually before I even finished getting ready.  But like everyone, I wanted the type of hair I didn't have.  I spent my childhood longing to have curly hair like my mom and sister.  I'd spend hours in the bathroom with a curling iron, desperate to get my hair to have a little volume.  It never did anything.  Stylists would curl my hair only for the curls to fall usually as I was leaving the salon.  Over the last few years it has started to change  Losing my hair due to the shock of illness and surgery and low-dose chemotherapy and other medicines has completely changed the texture of my hair.  I chopped off six inches recently....got rid of the thin, scraggly dead bleached ends and suddenly my hair is bouncy and super wavy.  It's weird.  Having straight hair for the crucial awkward learning how to style days has left me completely unaware of how to deal with wavy hair.  When I try to style my hair for work, I feel like a teen trying to style her hair for the first day of 8th grade.

I've always known who I am.  But what do you do when you don't recognize yourself in the mirror?

So New Year, New Me seems better than ever this year.  I'd love to be someone else when I wake up tomorrow.  Truthfully, I love New Years.  A chance to reflect and move forward.  I've always a fan of taking stock and growing and moving forward. I have had a really bad couple of years.  I've had some people I loved pass away.  I thought I found love after so long thinking it would never come....I was wrong.  Every time I turn around my health is a new challenge.  I won't go into all of the hell my life has been.  It's a lonely world to be sick all the time.  The struggle has been real.  Sometimes, I wish I could wake up tomorrow and it could all be different.

Don't get me wrong, I love my life.  I've got a lot going for me.  But it's easy to wish for a cop out.  To wake up and make a resolution to be different, and for it to come true.  Wishes and hopes and dreams are important.  That's why I love New Years.  A new slate, a new chance.  There's something great about it.

So right now, I'm going to go to the balldrop and cry myself into the New Year.  "If nobody sees you cry, you can say it was raining outside"...and it is raining, so I'm all good there.  Because tonight, I'm going to be sad about how bad the end of 2018 has been.  And tomorrow?  Tomorrow I'm not sure...maybe next year will be better than the last.

Crohns and Colitis Awareness Week 2018

This week, December 1-7, 2018, is Crohns and Colitis Awareness Week.

Crohns and Ulcerative Colitis are both Inflammatory Bowel Diseases (IBD).  They are painful, medically incurable diseases that attack the digestive system, causing abdominal pain, persistent diarrhea, rectal bleeding, fever and fatigue.  IBD can be debilitating and sometimes leads to life-threatening complications.  In addition to the impact on the GI tract, IBD may also affect the joints, skin, bones, kidneys, liver and eyes.

As you probably know if you're reading this blog, I have Ulcerative Colitis. My colon hates itself, and also causes pretty severe extra-intestinal problems too - like my uveitis, which is the leading cause of blindness in the United States among the working age population.   I spent a good chunk of 2017 and 2018 legally blind.  And it is because of my colon!

These do not go away.  There is no cure.  There's treatment and there's dealing with symptoms, but for the rest of my life, I will have ulcerative colitis.  I do not get better, it will not go away.

This year for awareness week, I want to talk about some numbers.

For this year:

• 31 doctors appointments.
• 12 blood draws at Quest Diagnostics
• 3 infusions at Dent Infusion Center
• 58 self given injections
• 1 procedure (colonoscopy)
• 2 eye surgeries
• 60 prescriptions pick ups at CVS
• 6 prescriptions delivered by UPS to my office b/c they need refrigeration
• 1 new pair of glasses
• 2 new glasses prescriptions

Want to know what that cost?  $79,445.62.

I'm lucky to have health insurance.  But this year has cost me $6,724 out of pocket.
$560 a month.

$140 a week.

$20 a day just on my health.

This does not include the money taken out of my paycheck for my premiums.  It does not include things not covered under insurance like supplies, guaze, baby wipes, desitin ointment, etc.  Oh and syringes aren't included either.  Because I have medicine that I need to inject, but they don't cover the syringes so I pay for those over the counter.    I also don't know final costs, because I still have doctors appointments and prescriptions in December...my insurance renewed Dec 1st, so it's always a little scary to find out how much things will be on the new plan!

And it doesn't go away.  It's a chronic illness.  My colorectal surgery last year did not cure my colitis. We still don't have a medicine that works to treat my colon.  The medicine we have tried are not helping entirely.  They're reducing symptoms but not the actual inflammation.  Until we find a medicine that works, I'll still be in a flare.  It's a chronic problem.

I had major eye surgery in each eye.  It does not cure the uveitis.  My eyes are not "better" because of the surgery.  They removed my cloudy lens, pulled apart my stuck pupils and implanted a new lens.  The surgery was necessary because of the prednisone drops I have to use to save my eyeballs from the uveitis flares.  It was 100% a side effect of the medicine.  I have been in a uveitis flare since the surgery...there is still inflammation happening in my eyes, because of the inflammation in my colon.  It's a chronic problem.

I don't talk about a lot of the ins and outs of my disease...other than with a few people that I trust enough to tell them the nitty gritty gross details.  It's not pretty and it's not fun.  It's embarrassing in professional situations when your stomach doesn't cooperate.  It's embarrassing in intimate situations when your stomach doesn't cooperate.  It's embarrassing.

But through all of this, it's fine.  I don't share this to make people feel bad for me or sad for me.  I don't need your pity.  My life is not sad.  It can be hard and frustrating, but it's never sad.  I am not sad that I am sick.  I am sick and it will never go away.  I know people mean well, but I can tell when they cock their heads and ask how I'm feeling that they're pitying me.  My life is happy and full.  There's times that I spend the whole day in bed to recover from a busy week, but I've never felt my disease limits me.  I work my ass off to ensure that my problems with my ass don't actually affect my life all that much.  But it is my life every single day, just as it has been for the past 16 years. 5,840 days.   And I'll wake up tomorrow and do it all again on day 5,841.  How do I do it?  I'm not sure but I'm sure not gonna give up.