WEGO Health Activist Awards

20131217-192815.jpgWEGO Health Activist Awards

im a firm believer in…. standing up for what you believe in! behind every choice in your life should stand someone who has good moral, best interest for all parties involved & the ability to help support others by supporting the small goals towards one common goal. thats teamwork, right?

my support team doesnt just involve friends and family. my support group lives 25,000 miles away. my support group lives online through social media, through magazines we produce, through professional communities and national non-profits. many people make up my support team of IBD specialists – i say specialists in a unique way. we may not all be doctors, but we have something better than doctors will ever be able to tell us; personal experience. we have been operated on, tested on, criticized for not looking sick enough & criticized for the way we look when we are sick. something else doctors will never be able to tell us is how to deal with these things when they happen to us.

there are many people that have helped me on me journey to become who i am today. i am eternally grateful for the wisdom and advice they have given me throughout the years. it hasnt always been easy to hear, read and experience, but it has helped me cope. it has helped me come to terms with my diagnosis and live a better quality of life. most importantly, it has taught me to fight.. for myself, for others and for awareness.  many people look at social media like it is a negative thing, but i have had such an amazing experience connecting with others like myself, that i couldnt imagine a life without it. communicating with others who live with IBD and chronic disease, raising awareness to diseases like ours, finding funds to study and research towards a cure and… drumroll… advocate for others!!

im proud of who i have grown to be and that speaks volumes. ive fought like hell to be where i am today and have many people to thank for that.

i ask that you nominate your health activist heroes & the people who have helped mold you into a better person, advocate & patient. maybe you dont have a disease but you follow someone elses journey or blog through social media (instagram, twitter, facebook, website/blog)… i ask that you dig deep in your heart and thank them with a nomination like i have. take the time to browse around some of the blogs that may be related to mine & you will find some amazing, courageous and crazy, fun people who find ways to fight for others by providing them support and relief that things will be ok.

awards.wegohealth.com/   – nominate your favorite activist here!

http://instagram.com/jojocrabb https://www.facebook.com/jojocrabb  https://twitter.com/kjocrabb http://www.linkedin.com/pub/kelly-crabb/71/bb2/a44/

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all i want for christmas is a set of functioning bowels (IBD awareness week 2013)

not to much to ask, right?? i know.. i know i should be grateful for the bowels i still do have, but for how often they hardly work (or is it working too hard??) i would appreciate a fresh set of them.

today i was supposed to have my follow-up to see how my levels are doing since being off Humira. so far the only physical things ive noticed as far as withdrawal from the injection are muscle aches and very sore joints; i can unfortunately tell with how much pain i have been in lately (not localized to one area). its been a long week at work & stress is trying to sneak its way in to my body. i think ive done a pretty good job of finding ways to eliminate most of my stress in healthy ways. i think most of the biological withdrawal will be evident in the next few months to come as far as increased stomach pains & more frequent trips to the bathroom, but for now, i want need to remain off biologics & enjoy the time im able to have without them in my system. ive only been off of them for a little over a month. even in just this short period of time my immune system is better, the psoriasis caused by the injection is lessening (but still evident), i have had no flu-like symptoms and my overall spirit has been lifted since i dont feel weighed down by an injection every other week.

ive been researching the two types of chemotherapy my GI would like to try out.  6mp & Methotrexate – both very risky drugs. Humira turned out to be a scary drug for me, but did not know this when i first started. unknown risks of long-term side effects.. obviously, anytime you start a new medication, there are risks, but these arent your typical run-of-the-mill side effects. these medications used to treat IBD are scary. these 2 specific therapies are used to treat different types of cancer including leukemia – thus proving how potent they can be.  its first side effect listed is obviously well-known, vomiting. next comes nausea, hair loss, easy bruising/bleeding (which is a huge concern in IBD patients; which is why blood tests are so frequent from possible worsened anemia), dizziness/fainting & joint pain/swelling. long term side effects include liver & lung damage.  i even read that one of these drugs is/was used for abortions in the past (!). there are many things to consider when choosing these drugs and which will prove to have more of a positive effect on ones body than worsening one’s health. how will these drugs impact my life? as much as i dont feel well since my colonoscopy, at what length do we have to go to achieve maintenance for my symptoms?

so why chemotherapy? for many patients that need to remain on steroids in order to stay out of a terrible cyclic flare, or have a severe flare after stopping the use of steroids, Methotrexate & Mercaptopurine are a way to achieve the same results without chronic steroid use. since i fall into the category of chronic steroid use and my body has seen an extent of long-term damage from them, its time to try it. i guess ill have the next week to continue my research and try to remain neutral regarding what i find. most of the articles that pop up are so negative, so im thankful for some of the online communities im a part of to help find the positive & put it into perspective, how these meds have been successful for them. i dont know what my future has in store for me, but im determined that i will find something that will work for me. the unknown is a really scary thing to me; im not great with change. researching and finding only negative response and feedback sucks to be honest. having a disease with no cure sucks.

here is more information on why treating IBD with chemotherapy has been effective in many patients:

http://www.med.unc.edu/gi/specialties/ibd/images/treatment-of-crohns/Methotrexate.pdf (VERY helpful website)

http://www.healthline.com/health/crohns-disease/6-mp-remicade-methotrexate