standstill.

20140213-191509.jpgits been pretty quiet at #purpleproject lately.. i guess i feel as though silence is better than being dishonest. since we’re family, ill let you in on whats been going on (or lack there of) over here..

winter has been hard. what seems like “rest” and quiet for the last month or two.. have actually been quite the opposite.

my pain management since christmas has been at an all-time low. i feel like when my pain is out of control, i have no sense of control of my immune system. little to no energy is produced from my body and getting out of a seated position made me cry in my last flare.

in the first week of january, i experienced the worst fibro(arthritis?) flare up in my hands/body that i have ever had. its never been this bad. i wasnt able to hold a pencil in my right hand. i cried constantly. every nerve ending in my body hurt; i couldnt move any of the joints without coming to tears. i found myself on the floor many times. this lasted for about 3 weeks.

it was during the end of this flare i had an accident. after falling down a set of stairs & waiting a week too long to be checked out, i found i had separated my right shoulder when i hit the bottom. Boom.

i cannot explain to you the sense of helplessness i feel when i start to flare. prescriptions are not helping, other prescriptions are not covered by insurance or cost $256/bottle with insurance. im allergic to most pain meds. its not been a glamorous winter so far. there have been many sleepless nights as of late. some filled with physical pain, some filled with fevers, anxiety & nightmares. but most nights are filled with tears.

my entire right side was affected when i fell, but its been an interesting jan/feb using one hand during a flare. ill let you paint the picture.. ive had a pain in my ass for the past month that seems to only get worse with time (fistula/fissure).  i am in the middle of a not so great flare that has brought me to my knees physically & emotionally. i see my new GI the first week in march. funny how winter has crept up on us so fast, but 2 weeks seems so far away. im miserable. my quality of life is less than stellar living in pain. i dont like what im about to say: its time for injections.

after giving it one last ditch effort last year, i had hopes Humira would give my body a little more mercy than it has before. it seems though, to get worse every time, and will get worse with each time it is stopped. i made the decision with the supervision of a GI, that i would be done with Humira. no more allergic reactions, no more weird infections, no more lung issues. i was free. i cannot express the feeling of leaving a doctors office and hearing the words “youre on a drug hiatus, treat this as a vacation”. it was a terrifying & wonderful experience

i take the good days & i hug them tight. i give all of my energy and soul in to these days, because i know there will be bad ones. its hard to conserve my energy on the good days, because i want to live an honest, open life to the world and give everything i have on those days and more. on my good days, im superwoman living in jeans and a smile. i earn those days & refuse to let them go.

im taking gabapentin. im applying the voltaren 4x day. im praying often. and when im able, i. run. like. hell.

#despite

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a letter to my younger self

dear self,

you just turned 16. life is exciting. you have the world at your fingertips. you learn how to drive this year! there are so many things id like to tell you, answers that would have been useful & encouragement that you needed at certain periods of your life. have a seat & lets go through a few things:

dont go for the slidetackle. having your knee completely reconstructed the summer you turn 16 isnt ideal. having an unsupportive wobbly knee for the rest of your life isnt, either. this game will prove to be, essentially the last game you really ever play. though the rehab sucks, you get to work out with mr suda every day after school. listen. his advice proves to be meaningful during the next few years of your life.

have hope. you will have a brush with death in may of 2004. 3 days after your 17th birthday, on july 13th, 2004,  you will be diagnosed with Crohn’s Disease. you will have more questions than answers. summer is a blur & is spent with family trying to put the pieces together of a heavy diagnosis. much of the next few months you spend in the bathroom or on a couch dependent on other people. you will learn how much your brothers care for you. (when you get home from the hospital, dont try to carry a gallon of milk up the stairs, you fall.) that disgusting hospital spray? leave it there.

the next year is full of steroids, different concoctions of many pills & your best attempt at senior memories. then comes college; i wont give it all away.. some of that is pretty fun to find out on your own. some of it is not fun. 

hug tighter. the day before you move to college, a friend passes away. you will regret how you acted the last time you saw him.

life at 21 will be hard. trying to live as a functional college student just beginning to learn how your body attacks itself is hardno one will understand it, including you. despite hours full of IV Remicade each month, you’ll go in for a routine GI check up &  walk into your first surgery an hour later. that one doesnt end fun. you’ll sit on a donut for part of the semester. it will become a funny conversation piece. (youll still have issues for a loooong time). youll get a second diagnosis of IBD, this time Ulcerative Colitis. that hopeful self-injection they want you to take? no one tells you that youll need it the rest of your life. instead of sulking and seeking other ways to ignore the pain, accept it. life becomes SO much easier when you accept it. you wont be (as) bitter & your focus in life becomes crystal clear. you will be an advocate for yourself & share your story in front of Miller Park. ps – its windy that day, leave the cards at home.

you will gain relationships with lifelong friends & you will gain new family (sisters, a niece and a nephew – that part is not finished yet). loved ones will perish because sometimes, those who love us the most, stay for the shortest time here on earth. you will lose yourself in relationships, but somehow pick yourself back up. you will learn who your friends are & lose unsupportive links in the process.  your faith in God will be tested & many times, all you will be able to do is cry. keep praying – things get better. college is full of ups and down (you fail stats class), but you graduate. & even make the Dean’s list! milwaukee turns out to be the best decision youll ever make, ill let you see why.

at 23, you will be tested & make a choice that will impact many lives. you will relive it many, many times. in the end, you will win.

youll fall in and out of like in many different places, sometimes the same place twice. some of those that are let go prove to be blessings in disguise. in time, the wounds heal. trust me, things definitely work out ♥

life with an illness isnt easy and there are are many obstacles you will face. your first job, your first apartment.. you will work your ass off. youll be faced with a decision to make, which will likely be the hardest one you have had to make that will lead you to today.

if there is one piece of advice i could give to you it would be this: do it all over again. dont do anything different. its taken 26 years for me to love you this much. blessed is the life you live. you have hope, you have been given support and you have decided to do something bigger with your life.

love, me

ps – dont forget to smile.