new demons to battle

WOOF. what do you say when youre angry, sad, confused & have absolutely zero energy to hold any of the above emotions at all?

im glad i waited a few days to update, because there have definitely been some angry moments of reflection. superman juic

its no secret i havent been feeling well at all lately. i wake up in the middle of the night & start to blow chunks all over. im uncomfortable in any sleeping position. the pain in my body combined with the wounds i have going up in to my colon have put a huge dent in my sleep. im talking maybe an hr or 2 a night. it literally feels like my butt has teeth & it is chewing shards of glass.

after an exam on tuesday, the doctor got me going on 2 forms of chemotherapy that will hopefully aid in the healing of the significant issues ive been having with a fistula & a fissure. after hearing several sighs an “oh my gosh” and a “we need to repair that right now” i felt less than thrilled about what i may hear. he did tell me i need to have it repaired, but how much depended on how my body decides to respond to the remicade. in order to avoid complicated surgery, i need to start them both immediately to avoid further damage & hopefully stop it from spreading to the greater part of my colon. we will know within 6 weeks if they are working. i have a good feeling about this doctor; he was kind, he did his research about my case & expressed genuine concern to meeting my needs. i truly feel as if my journey to remission is so close.

in an effort to save the part above my rectum that has not been damaged yet, i started Remicade (today) again in addition to mercaptopurine (6-mp). i will know within 6 weeks if this fixes my fissure & fistula.

he did say we are taking a chance by starting remicade (infliximab) over again, since it has failed me once. but in the 3-4 years i was on it, it was probably the closest to remission i had experienced since i was diagnosed. to spare me some costs, were trying to avoid more genetic blood tests, since they are NOT covered by insurance & usually run upwards of $1000 each. i also risk the chance of having a severe reaction, after stopping it for so many years & developing anti-bodies to it.. but if i dont start NOW, i will lose part or most of my rectum and colon. (now you see why i advocate?) by the time we would receive the general genetic markers & anti-body tests, the damage may already progress, so.. were risking it. i need the medications & i need them now. i started the oral pill immediately on wednesday & had my first loading dose of the infusion today and will have another in 2 weeks.

for now, im on a liquid diet in an effort to try and not have any output, as to no irritate the area more than it is already. i am hungry, and weak and im tired. i came home from my infusion and i slept like a rock for a solid half hour.

im not sure i have more to say than that.. now its a waiting game.  im angry, i have no energy, i dont sleep; even sitting down it feels like im getting a rectal exam, but with a cactus instead fingers. i cant run – while my team has just begun practice last week, i can barely even move without losing an alarming amount of blood. ive been puking on & off for weeks & have at least 8 or 9 mouth ulcers. knowing i have 6 more weeks of waiting and feeling like this makes me mentally drained. i found myself at my desk on wednesday welling up in tears and i had not even been thinking about it. by the time i made it to the bathroom, i was sobbing. it hit me like a ton of bricks that i may lose part or all of my rectum for something that seemed so minute not long ago.

on a mission for remission!

 

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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

polar vortex flaring

days like today remind me why i treasure my good days, my great days.64917faabd5fe5a7059db2f1b0f2057a

i had a rough night last night & havent been feeling my greatest lately (scumbag lungs, fissure). im in a flare right now & its definitely affecting the rest of my body. ive been trying my best to do low impact exercises to keep up with my training plan, but even that seems to be too much lately.

i told a friend last night, most days, my positive attitude wins over my IBD, but there are some days you have to let it physically and emotionally defeat you, or youll never win your battle against it. i cried. i cried a lot last night and today. humility brings us back to a level where we know we can try to control our emotions/attitude as best we can, but we come to a point where we have to accept we cannot always control our bodies. and that is hard. i hate calling into work, but i know that i would be unable to physically do any job today. if can manage to get from point A on the couch today to point B being the bathroom, id be lucky. quite a shitty situation when you get the urge.

my fibro has been flaring badly the past week. my hands (thumbs & joints specifically) have been difficult to move lately. id chalk it up to cold weather, but its lasted too long & flaring doesnt help. ive been lucky enough to be blessed with a family doctor that knows me well & responds very quickly to my requests. the route wed had originally tried cost well over $200 with insurance, so we settled on a different med for the past few months, but it hasnt been working. today, he phoned in a topical pain solution and we tried the other drug again. $256 with insurance. tears, again.

im such its the lack of sleep, energy & exercise ive had this week, but im bummed/exhausted/fed up with my body. comically, im always the first one to say “oh, rub some dirt on it. youll be fine !” but to hell with the dirt today, ill cry instead. the dirt will be there tomorrow.