patience really is a virtue.

this amazing woman… I’m speechless. This is what a hero looks like: no cape, no badge, no Gotham city bat signal. This woman has handled her journey with grace, dignity & resilience. I love you Brooke. You are a reason I will turn #purpleproject into a long term project. Xoxo.

Fierce and Flared

Did I blink and this was over? I officially have NO ostomy. I am speechless. It’s great, better than you could ever imagine. My life is back, my freedom is back, my family’s freedom is back and all of that is priceless.

As I lay in my hospital bed, for hopefully the last time for a long time, I can’t help but to think about how fast this all went. Do you want to know why I feel like it went so fast? Because I had a positive attitude towards all of it for the majority of the time. Am I perfect? No, far from it. Have I handled this situation with grace and positivity? I can tell you that I have given it my best effort, but there have been break downs and that is ok.  I went through a lot of things to fix those negative thoughts and actions. It was…

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before i got sick

the following is a collaborative piece that would simply not exist without the knowledge you have all given to me. i dedicate these words to all of the generous souls who have let me inside of their personal worlds. on the good days.. and on the worst days of their lives. this is my love letter to all of the people who have made an impact on my personal journey.

dont let my positivity fool you. i have had hardships and struggles in my life with disease. i will not lie; there are days i quit, knowing i can start over fresh the next day. but the things that have been taken away from me due to my disease, have in turn provided me in opportunity; ten fold. friends, networks of support, communities filled with IBD & autoimmune patients just. like. me. who knew?

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