Today is average, I have plans to make hamburgers with a garlic bacon aioli spread and I couldn't be more stoked to dig my fingers into some of that raw ground beef, shape it, cook it, entice all of my senses, and then eat it. Bleeding, pain, cramping be damned - food is my passion and I love finding ways to create meals that meet both my dietary needs and desire for a varied diet in flavor and texture.
But I am feeling dark and sad and tired of being told I'm twisted, or too twisted for social acceptance, and need to rant a bit.
Yesterday, the general consensus of my case being a crap shoot was yet again verified. I met with one of the top GI's in the area, a GI who has had an extensive focus in crohn's and IBD, a GI with ample experience, and I was told she did not feel comfortable taking me on as a patient due to the extensiveness of the disease and lack of options.
I am tired of being shuffled around, tired of no one being able to help, and tired of people not being capable of bluntly stating the truth. I'm not the most tactful individual, I find beating around the bush utterly useless, and wish dr's would quit treating me as if I'm new to it all. It was 9 years Monday. 9 years of failures, minimal successes, no remission, not even minimal disease activity. 9 years of "what am I to do with you" before my life changes and I find myself moving on to a new doctor.
I don't have space in my life for humble or hesitant physicians, I want to find another with a damn God complex who is willing to prioritize their passion for medicine and IBD above any other aspect in their life - including love, including family, including serving others - I want their passion and desire for self-fulfillment to come first and I want to capitalize off that passion. Apparently, this is a twisted desire because we live in the age where love is everything, bodies are supposed to heal themselves, unicorns roam free and frequently, and we don't use one another. A world without disease that is ruled by love is all fine and lovely and a wonderful aspiration - but it's not life's reality and is utter bullshit.
Despite my generally positive approach to each day, it's only possible because I see and have a need to acknowledge the darkness and pitfalls of the current course of treatment/ the disease/ life in general before I can focus on the positive. A need to acknowledge the bleeding, the lack of improvement, the eventual surgery, the constant infections, bruising, and that every Tuesday I will face a day of headaches, nausea, fatigue following my injection. Facing all the dark, scary, messed up crap I will deal with and continue to deal with so the rest of my life can remain in tact. I do not get a break from the daily efforts because then I will lose those couple good days I do get to enjoy.
I spend my free time researching a disease not dancing in a club. I am passionate about food and cooking, not clothes and drinking. I write because I can manipulate a world that way - I can embrace how I see it rather then trying to avoid offending one of the constant optimists in my life by speaking about something that rips their head from the clouds until they can shove it under some sand. The mistake seems to be assuming that my ability to address and acknowledge the painful, difficult or challenging aspects in life means I am unhappy. Instead, it is in these complexities - the darkness and twisted nature of life where I am happy.
I am sad mostly just because all that doesn't seem acceptable by others and bothers them more then it bothers me as far as I can tell.
Grateful for this thread for when those daily things are just well... need a place to go. Hoping everyone's day is successful, unpredictable bellies and all.