Friday, August 24, 2012

dis-ABLE-d

pic 1) my new tee shirts!! i love them sooo much. huge logo on front, website down the side with logo and name on the back...oh yea, and they even have the trademark symbol now!! yahooooo!! thank you to forte creative for being amazing designers and an amazing company! pic 2) my 'display' at my parents house this weekend and...pic 3)...rudy mc.booty and i sell sell sellin away. pic 4) my favorite...opportunities like these will make all my pain worth it.
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this past weekend i set up shop at my house to sell tumor hater tee's and oh my goodness! so exciting how many shirts have sold. over 40 shirts you guys. in only 2 weeks! it really is incredible to watch this non profit, this dream, come together. yes, the website isn't up yet and i am learning things as i go... but i'm going. i'm doing it. i am so so excited to do more but only time will get me there and i am literally just soaking in every moment of these beginning stages.
now unable to work and "disabled", this life is showing me just how 'able' i am...in areas that only require passion to get there. i feared the label of 'disabled' but really, its just a word. i will decide what i do with my life, not that silly word. yes, i may be limited in certain areas. but i also am finding that where your passions are, we have the potential to be limitless.
some say that (with over a thousand tumors) i have over a thousand reasons to be angry, and i see what they are saying. but i must fight against that mindset and instead see that i have over a thousand reasons to embrace the hurting. love the weak and have compassion on those that feel like they cant go on. tumor hater inc is going to make that possible. tumor hater was developed upon my pain and tumors and it is now the reason i have hope every morning.
people tell me how positive they think i am. and as much as id like to just be like 'yea your right, i've got it all together. this tumor-ey pain filled life is a piece of cake', i've said it before, my attitude of course, is not always hunky dory positive. i'm like a crazy roller coaster of emotions all the time. just ask my poor poor boyfriend. i've never cried this much in my life and these passed 9 months i have probably gone through more changes than when i was in my mothers womb. these changes are keeping me on my toes. i cant keep up with my life. but something that remains, something that doesn't change is the Lord. He is always good, and since He is always good, i know my tumors can be used for something good. and in order to see that 'good', i must not make my tumors and my pain about me. i must look to see my life in the perspective that God has on it. oh it is hard. its hard to set myself aside and look at my life from an outsiders perspective. its hard to resist getting on the floor flailing around in tears. throwing fists up to God yelling "WHY?!" oh i've been there before and there is NOTHING wrong with crying. but i refuse to let my tumors win. i refuse to be depressed. and not only do i have the will to live but i greatly desire to reach my fullest potential, and i'm not going to get there by throwing pity parties. so as long as i'm here. as long as this is my life... i am going to need to make the best of it. sure i will have bad days, its just all about re-gaining the perspective that gets you back on your feet again.

"God gives beauty for ashes
strength for fear
gladness for mourning
peace for despair"

part of one of my all time favorite songs EVER.

i believe God inspired tumor hater within me so i could inspire others.
he changed my heart towards this battle, this pain, this fear.
join me.
turn your pain into something beautiful. 

Friday, August 10, 2012

terminated...

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pic 1) so for times that i hurt way too bad to get around but i don't want my pain to limit my social life, i got a wheel chair to help me out. though it has no head rest, it is better than walking! pic 2) i have a problem with taking pills, they terrify me. addiction terrifies me. but, i sort of have to take pills now to have a day where im not staying in bed. so im trying out an extended release morphine pill. only on day two but so far so good. pic 3) a friend set up this fundraising account for me through this indiegogo website, super sweet. he didn't even tell me about it either until after he was done. i am super thankful for his heart, and for all of those that have donated. i made a video for it too! a youtube video...it feels funny to see me on there. but check it out! for those of you who know me from years ago, you will be able to hear the difference in my voice now. ugh, i hate my voice so bad. i MISS my vocal cords. 

here's just a bit of an update...

on july 31st i was supposed to be headed back into my job. ready and able to work. unfortunatly tumors suck.

when people ask me how i am feeling and healing up, i don't exactly know the best way to answer them. yes, my incision is healing from where they removed the 'creeper' in march. but there are so many things that are worse than ever before. there was also quite a significant amount of nerve damage from the surgery that i struggle with daily. my right shoulder is challenging me to deal with a new feeling of pain. it feels like a burning hot needle sliding around in the muscles in my shoulder. its a WIERD feeling. very unpleasant. i also have another new pain. its in the front right side of my neck when i talk. physical therapist is telling my that my only working vocal cord (the right one) has grown so weak from the tumors that are on it that it's basically using all the muscles in the front of my neck for power. so now most of the time when i am talking, my neck is spasming. it even sometimes spasms in the back of the neck?! praying the right vocal cord last years and years longer...or else...i will eventually need a tracheotomy to help me breath and speak. what joy, huh?!
not to be totally depressing but, my pain continued:
i also still cant lean forward without a ton of pain. getting shoes out of my closet, getting dressed, bending down, reaching forward, out to the side. standing at the kitchen counter to cook...cant do it. and this doesnt just cause neck and shoulder pain, my whole body is getting worse. my spine, my hips, my sciatic nerves, my feet, my arms. its really every where. the most annoying of all my pain is that i cant even sit comfortably in a chair any more. i need head support, to be reclined and even better, have some sort of foot rest. it seems the tumors that are on every level of my spine are being compressed too much when in the standing but most significantly the seated possition. making laying down the most 'comfortable'.

well, clearly this is not an adequate body to be of benefit at my job. although my surgeon wrote a note on june 8th that i could return to work july 31st...my body just isn't making that possible, and our employee health nurse didn't even approve me to come back anyways.

so, i have applied for disability and i hope that i hear back soon because i haven't worked since february! so please, cross those fingers, and legs, and arms, and toes...and of course PRAY that i get approved the first time around. and THEN i will be able to be on the Oregon Health plan for medical insurance and i could also start receiving financial help for the cost of living.

today is the official day that my job is terminated . (i cant help but think of arnold schwarzenegger when saying that). 'i've been TERMINATED'. sort of a sucky feeling. but i know that i know that i know God has allowed this all to happen and i am in His hands.

sorry for the boring post. i just wanted to update you guys on my "recovery" and my job situation. there will be more to come on my feelings behind 'disabled'.


Friday, August 3, 2012

defining me

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this is something that i have been contemplating for a long time. never been too sure just how to go about expressing these thoughts though. so please bare with me as i try not to struggle through explaining this new (to me) concept.

while being consoled, has anyone ever said "yes, but dont let this define you". well, ive heard that time and time again. and my response was usually "i know...i wont." and i stood strong in believing that was a good standard to live by. i didnt want to be taken down by something. i wanted to be strong and not allow my tumors to make me weak. but they did. but what i was not realizing is that they also gave me my greatest strength. if i completely step back and take a look at the effects that my tumors have caused me in a very broad perspective, i will see challenges, pain, tears and anger; but i also see strength, perspective, courage and humility. why when considering how something defines us must we focus on the negative aspect of it?

replace the word "tumors" with whatever you are going through. who says that your word has to define you in a negative way? look at who it has brought you to be today. look at the perspective it has given you that youd never be able to have with out it.

my tumors don't come along with a life sentence of sorrow unless i choose to allow that. sure i struggle. but i refuse to allow my pain to be in vain, so i choose to make them into more than just my struggle. my tumors have brought out my greatest strength, compassions, my heart and everything that i dream to become. because of my tumors i am strong. because of my tumors i have courage. because of my tumors i can feel Gods hands holding me up. literally only walking by his grace. which translates into every aspect of my life, i am what i am only by his permission.


'Kelly Anne Sullivan' defined is 'black eyed warrior woman with grace'. my tumors, my sisters death, and other life challenges has made this definition true. so yes, the hard stuff in my life has defined me. but NOT into a sorrow filled, angry, pessimist. instead they have defined me into this black eyed warrior woman with grace.