It has been a long time since I sat down and wrote a post that I ended up posting here. Perhaps all who followed me here and my journey have long since moved on. I don’t blame you, though I am curious as to why you followed to start with…. But now I am writing again. This post is unedited, so please forgive grammar and typographical errors. I was seeking sleep, and could not… So I’m writing about medications, about life, and more with the thought tying it together my Ulcerative Colitis, a form of Inflammatory Bowel Disease… the flow may be random, but hey that’s me, lol.
I just injected about $2,000 into my left thigh, in a week I’ll do it again but to my right, and every week will repeat. I’ve been doing this for a few months, before then I was doing it every other week for a few years. Every day I take pills as well, at my prescribed dose they cost around $1,000 a month… Lucky my insurance pays a good chunk of it, and the manufactures did cover a good portion of the remainder. However the pill is now generic, and no manufacture support to help cover the nearly $200 a month that is left over for me until I meet my out of pocket max. Luckily at my last GI visit we decided to try and tapper myself off, moving from max dose in September, to now at the lowest dose possible, and by the end of the month I am hoping to be off it. When I went on the injections we were able to get my dose lower for a time, but never fully off… this time I think I may make it. However even with my meds I am not fully in remission, my arthritis, nausea, gi pains rarely leave for long, but no noticeable bleeding for a few months, that is good, and my last colonoscopy, 3 years ago, looked so good they said come back in 5 rather than 2 years.
IBD has not ruined my life, has not controlled my life, and yet it has. What, that makes no sense I know, but it is true. I often try to prevent myself from letting my IBD control me. I force myself to do things I enjoy, I push myself, at times too much, to engage in the wonders of creation, to travel, to explore and more. But when flaring, I tend to hesitate to plan anything in the future, because of the what ifs regarding a potential flareup when I am doing something. I find myself financially in a mess as I deal with the medical, and then I get it straitened out and it falls back down. I got stuck in jobs that drain me, for fear of what ifs regarding insurance and paying for the specialists, medications and more that I need. I was burnt out from school and only finished my MDiv and not my MA in Counseling Ministries, the truth was part of my burnout was from the struggles I encountered due to my IBD and the stresses as a result… I wish I had finished my second degree.
IBD is complex, my current GI told me that part of why he likes treating IBD is that every case is unique, there is no cookie cutter solution, and he has to think. Yay… attention, focus, but boo no easy fix, no sure cut this works to get you feeling well. My case has always been complex, it has always been odd and engaging the fringes. Also some things that are part of my history may not be from the UC, but because in rare cases it could be, we attributed them to it and moved on. My previous rheumatologist before he moved told me in his years of treating patients the majority fit the book of “when the GI stuff is under control the arthritis is” but then there are a handful of us, lucky me, that that just doesn’t happen. I have had multiple GI’s confirm my diagnoses over the years, I have it, it is not fun, but even the description of the way and how my colon is inflamed and ulcerated when in active flare or near remission does not match the textbook definition. Yay, for being the odd ball… I tend to attribute most of what goes wrong with me to my IBD, even though I know at times it is just random normal stuff, but I am suppressing my immune system, I have parts of my immune system removed, so indirectly perhaps even normal viral and bacterial caused problems could be tied to it lol.
IBD also leads me to be depressed at times. It leads me to not engage in life and relationship. I’ve always had a hard time as a shy guy and extreme introvert with relationships. However after my hospitalizations, near death moments, and diagnoses, a part of me died. A part of me that had hope of a future with close friends, with significant other, family. At times people have broken through that death and become friends, but the death is there, and I have realized it more and more of late. I do not want to burden anyone with my illness, and so on top of all my other struggles with relationships, history of broken trust, shy, introverted, there is the I do not want to ever be a burden death spiral, that basically caused me to shut down and not be open, to not look…. I crave companionship, but I fear it more, I fear the pain and struggle I will bring to another. Some friends have at times helped me have a bit of hope that maybe I can be alive again, but now I’m in a place in life where I rarely encounter others to form such connection with. Who really wants to be with someone who at times carries spare clothes in his car for fear his body will not give him enough notice? Fear that is grounded in historical truth…
I’m changing things, and it is just chance it is this time of year. I am seeking to make some additional changes to my diet, along with seeking to find some form of exercise that I can reliably do with my joint, gi… issues (and my messed up knee). The diet changes are coming sooner, finding paths of including more and better nutrition, in ways that my body can hopefully handle it.
I’m embracing my photography, one of the few forms of art that brings me joy and that in my sharing of it has caused others joy. I’m exploring different aspects of it, trying new things, and putting my work out there. (If your interested in my artwork either to see some, to collaborate, or… let me know). I’m engaging in more academic engagement with my ministerial pursuits as well.
I am an ordained and trained minister, I have a strong sense of calling to live out the life and ministry of Christ in this world, to bring about healing and peace. I am gifted in certain aspects of ministry more than others, and I love to engage in them. I am called to multi congregational, I am called to share the peace of Christ and invite all into healthy and whole relationships with themselves, others, creation and the Holy One. This is expressed in part through the proclamation of the Living Word in various congregations, it is also through advocacy work on behalf of those who hunger and suffer other injustices. It may involve hospital chaplaincy work again. It means being “Pastor” to someone who I have never been their pastor officially… however it also means not being tied to a congregation, for I am meant to be with many. i struggle as well as I need spiritual healing and fulfillment, but theologically and spiritually many of the congregations I am unable to fully worship in as a member of congregation except when in active leading ministry, for when I sit in a sanctuary that has the idols of nationality in places set aside for the Holy, I break down, and am unable to engage in worship, except when it is not my “home” and I am sharing in guest ministry, but when it is my “home” I find myself often broken, wounded, by the idolatry, even if not meant, and the theological implications expressed by such idols.
Yea, there’s more running through my head, but I need to sleep. Yea I know this is not my normaly blog entry, but hey I’m out of practice.