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Tuesday, January 10, 2012

the thing i gave my dr.

A glimpse into the life of a Cushie Queen…

I was always the girl with the self-confidence, the big heart, the smile on her face, the one who would hold your hand when the world turned their back on you, or when your world was flipped upside down… And then it happened to me.

I had always been tall, and pretty and always had this hump on the back of my neck. I was used to being a bigger girl, I prided myself on my size 14/16 and my curves. I tried to make it ok for anyone who was larger, trying to convince them that big was beautiful and we needed to embrace our inner beauty and let that shine through, when we felt our outsides didn’t match… I’m still trying.

Back in high school, I always had messed up periods. I’d be in so much pain that I would miss school, but the doctors weren’t worried. They would just sign off on my excuses for missing school. I also had really bad migraines that would keep me out of school. But, if the doctors weren’t worried, why should I be?

I was always an emotional rollercoaster, the doctors chalked it up to me being a teenage girl and, ‘it happens’. I started seeing a therapist, but that didn’t do much of anything… Until I was out of college. My sister and I would go head-to-head and it was a horrible relationship. My mom signed us up for sibling counseling, it didn’t work for us, but I liked the counselor so I stayed.

I managed to get through community college, alright. I ended up having an abortion, as well as losing 3 friends to suicide (within weeks of one another), but I managed. I had a 2.9 GPA and a smile on my face. When I started at ESU (end of 2004) things started to change. It was gradual at first. In about 2006/2007 I started to gain weight, I chalked it up to the “Freshman 15”. So, I did what any normal girl would do- diet and exercise.  I was constantly walking, hiking, swimming, going to the gym and eating healthy. Then I got myself involved in an abusive relationship and working for Children and Youth. I was now a social worker as well as dealing with this other thing. The weight started to come on and the headaches became much worse. I had gone to the ER a few times for the headaches, but nothing was done, I was just given an IV drip. I had gained about 60lbs in 2 months time between 2007-2008. It was really upsetting, I could no longer fit into my skinny jeans, my self-esteem started to sink and I was still dieting and exercising! I eventually got up the courage to leave my relationship in January of 2008. I moved back home and was less stressed. My body started to go back to normal, and I was able to fit into some smaller clothing, still not what I wanted though. My self-esteem was building back up and everyone noticed a happier, less hormonal me. So, chalk it up to the abuse… right?

Well, 2008-2010 I was in an out of another relationship. I was always stressed, and noticing things I hadn’t before. My stomach was rounder. My face was really rounding out and I was stopping to look like me. So I’d go tanning, exercise more, diet more and dye my hair… still… something wasn’t right. My weight would fluxuate… and I would be a chubby monkey one day, and the next I was back to looking like me. What the heck was going on!? It wasn’t until 2010 that I started to really get scared. I walked out of Walmart one day and couldn’t remember where I parked, but that happens to everyone, right? So, another night, me and the boyfriend we IN walmart and I couldn’t remember where we were.
“Where are we?”
“How did we get here?”
“You drove us”
“How? My car broke down”
“You bought a new one last week. Babe, are you ok?”
Needless to say he drove us home that night. But that wasn’t the first time I had forgotten where we were. We went to a concert and I sat at a stop sign waiting for it to turn red, we both laughed, but neither of us knew how bad it was. Then the black outs started. I’d forget where we were. I’d forget what I was doing, I’d snap for no reason… and then in June I fell down the steps and broke my foot… not quite sure how I fell. The hospital said it was a sprain, it wasn’t diagnosed a break until a few weeks later. Then in July I had severe pain in my legs, and my foot drs secretary blamed it on a Charlie horse. After a week someone finally listened to me and in July they took the cast off… Guess who has blood clots in her leg? Awesome. So then I’m told if I have chest pain to go to the ER. I have chronic chest pain, so… the next day, after I shaved and gave myself a pedicure (have to be pretty in the hospital), off to the ER we went. I was admitted for 55 days because I had blood clots in my lungs. So, after a week of bad food, good friends visiting and making friends with the nurses, I was cleared to go home… I couldn’t go back to work though, MY dr was on vacation. So I’m on cumadin and getting terrible headaches. I get rushed to the doctors because they wanted to make sure I wasn’t bleeding in my brain. Ok, so off we go for an MRI… guess what I have?
“well, you’re not bleeding in your brain”
“that’s a good thing, right?”
“it is but, we found  a brain tumor. It’s about the size of a quarter on your pituitary gland and you also have brain atrophy”
I’m just ready to get it all over with, but I have to have more tests and meet with a neurologist. I met with the neurologist and he gave me a list of tests I had to schedule. Well, that night he called and said I had an appointment with a neurosurgeon the NEXT DAY because my tumor was too close to my optic nerve and it was scaring him. Great. Just what I need. To miss more work!
So, off we go. Mom, dad, me and uncle mike off to see the surgeon. We meet with him. I did a pretty good job at holding myself together, until he said he wanted to shave my head. SERIOUSLY?! I stopped listening and ended up sobbing. Was this really happening to me? He says there’s a few tests to run and I may not need a full blown crainiotomy. So we wait… and wait… and wait… and then? You need to have the surgery. But go to the beach tomorrow…
He sent me to the beach since my summer sucked and was stolen from me. So we went and my cousins met me for lunch. And held me as I cried. Do I really have to do this?
And then he called us on that Sunday. We were late and he wanted to make sure we were still coming. Oh, we went. And I befriended all of the staff and tried to make it a good time. I had visitors in and out and then it was surgery day. August 4, 2010… I went in scared, I came out and made people laugh. “Hi annie! (My sister) Did you update my facebook?” then I fell back asleep, but everyone loved it… August 5, I woke up unable to see out of my right eye. Everyone started freaking out, but I tried to hold it together, plus I was so doped up that I couldn’t really function. It’s been scary, losing my sight. But I’m surviving. What other choice do I have?
So, I was released. Went home. Had visiting nurses come and go, had friends come and go (and remain gone), did the physical therapy thing, went on dates… hey, I’m sick not dead. And then I went back to work. My first surgeon said he had gotten it all and cleared me to go back. BIG MISTAKE. I went  back to more stress, people treating me like I was dead or diseased (which I am but you can’t catch it) and getting mad at me for walking with my cane. Seriously? I had a brain bleed before going back to work and the weight had shed a little… but of course I have a stressful job so bring on the cortisol!! I ended up meeting with a second surgeon because my first one was recommending radiation and my eye specialist said NO. He sent us to TJH and I met an awesome surgeon. He met with a tumor board who decided I needed a second surgery. He also said there was no need to rush the first one, or go through my skull and I’d probably be seeing right now.  Wow. Great.
April 12, 2011 I had my second surgery. Of course I had complications from that, why wouldn’t I? But I’ve been healing alright. I also had Lindic Radiation on July 28th. I was told that it takes anywhere from 6-12 months to see any changes. My MRI in October showed that I still have tumor, still wrapped around my carotid artery, but it’s shrinking. Gotta take the good with the bad I guess.
And then I started on Ketocanazole and I’ve seen a difference. My wonderful Endo wanted to put me on it because he’s worried about my heart, the weight isn’t coming off. It’s also difficult to exercise because I have no energy, I’m tired all the time and my muscles are weak. I’d go on a diet, but, I don’t eat anything. I’m never hungry.
As for the hormones, I’ve developed PTSD, and severe anxiety disorder. The panic attacks are less and sometimes I’m not as anxious as I was, probably because I’ve had so long to get used to all of this.

Are there days I feel like I’m on top of the world? Yes. Are there days I forget I’m blind? Yes. Are there days I forget my body has limitations now? Yes. Are there days where I feel like a supermodel? Yes.


Then there are days I want to slit my wrists. There are days I hate everyone. There are days I don’t want to speak to anyone because I hate the fact that I can’t concentrate, or I can’t see them or I can’t follow a conversation or I stutter or I feel like a fat slob. There are days I want to break every single mirror I see because I’m a hideous monster. There are days I can’t feel my legs or arms. There are days that I can’t get out of bed because the pain is so bad, and the headaches don’t allow me to do much. There are days I hate my life.

But I smile. And I press on. I try and stay as positive as I can, because being sad all the time doesn’t fit me, which is why some days I’ll choose to be angry because I hate to be sad.

I’d really like to be starting the healing process now, but until this tumor is gone… I’m still playing the waiting game. I want to go hiking, walking, swimming, dancing… I want to READ a book without forgetting what I have read or getting a headache. I want the pain to stop. I want to not hate people. I want to work. I want to go back to school. I want to continue to make a difference. I want to be happy, all the time. I want a cure. And I want to stop being so sad and angry all the time. I want to be better.

This is the snapshot of my life since it all began.  There’s a lot more I deal with and it’s more of a struggle than I let on. But that’s what hero’s do… we don’t let you see us struggle. Maybe calling myself a hero is a little vain but, that’s what my friends call me. Their hero, their inspiration.

*i actually had to stop writing and change the way i was doing things bc i got so damn emotional. reliving this thing kinda... broke my heart? idk. made me deal with things i didnt want to deal with. i looked at pictures of who i was. what my plans were and how everything has changed. i want to add more to this blutb, but i ran out of time... one of these days*

moms surgery is tomorrow 915am we have to be there. fingers crossed!

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