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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8 thoughts on “standstill.

  1. You are amazing Kelly. I was not aware of all that you go through. Thank you for sharing. I know that you are not trying to be inspiring but you are. I hope for and pray for some relief for you.

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  2. Hi Kelly! After reading this post, my heart aches for you. I can’t believe how much listening to your pain reminds me of mine. It has been a while since I’ve flared like that because I am now living with an Ileostomy. Have you discussed the possibility of the surgery with your doctors? I was in the hospital when they put me on Humira, after all the other needs stopped working… so the surgery was my last option. But I often wonder if I would have elected the surgery to beat the pain. Now that I’ve lived with an Ileostomy, it’s easy to that I definitely would… but back then it would have sounded a lot scarier.

    My thoughts are with you Kelly and if you ever have questions, please feel free to reach out to me on my blog: http://www.lifelemonsandlemonade.com

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  3. Thanks for sharing! Have u tried other biologics: Remicade or Cimiza? Maybe those would work better for you as compared to Humira. Cimiza is also an injection, Remicaide is an infusion. Its something to discuss with your doctor on your next visit. I think there is also a new experimental biologic out there as well.

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    • i originally tried remicade before humira and was told i am too high risk to go back on without having an adverse reaction. while i LOVED being on remicade, and we had pretty lengthy romance and even danced near remission, sadly we parted ways after about 5 years. i have heard of the new biologic you are talking about though!

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  4. Have you ever considered publishing an e-book or
    guest authoring on other websites? I have a blog based upon on the
    same ideas you discuss and would love to have you share some stories/information.
    I know my subscribers would enjoy your work. If you’re even remotely
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