Ang and Several No-Good, Very Bad Years....

I suppose that most blog's of this sort start at the beginning of the story and then chronologically relate how they have come to the present day. I, however, am both contrary and non-linear and have decided to move back and forth between what has come before and what is happening now. For me, the most logical thing to establish for this blog is what exactly is wrong with me (mental and emotional deficiencies aside). I will skip aside the tests, the traumas and a delightful bout of C-Difficile, and instead explain what all of the testing has established: I have, at present, three known auto-immune diseases, with a potential for a fourth as testing progresses. I know, I know, you're jealous. I can feel it.

The first is relatively benign and I have had it for as long as I can remember. It is called Raynaud's Syndrome/Disease/Phenomenon and, for me, it is more a nuisance than anything else. I have cold (my friends and family often use the term "dead") hands and feet, and when I am out in the cold I find that my ears and nose soon follow. I am also less tolerant to cold temperatures than others in my life, but that might also have a lot to do with the fact that I am a giant wussy. (That's right Uncle Oscar, I could NEVER hack it in Timmins!) Honestly, I would never have even known it was a real thing except I had to see a rheumatologist (blood doctor) in my teens and he was so concerned I was tested for Lupus. (FYI, Lupus is actually one disease that I do not currently have. Ask Dr. Gregory House: "it's never Lupus.") 

The second condition, and my most problematic thus far, actually started off as being benign as well. I had some problems during my last years in Undergrad, had various lovely tests and was diagnosed with mild proctitis. (A special shout out goes to my roommate at the time, Nat: your patience, grace, understanding, absence when I requested it and back rubbing at the window following diastorous bouts with Oral Fleet, have never and will never be forgotten. Heart.) Over the next several years I noticed that I wasn't going to the bathroom very often, which created a feeling of pressure in my stomach as it gradually got distended (think "Save the Children" television ads). I was treated off and on for this and the resulting pancreatitis, but was otherwise able to finish school and even do a semester abroad. When I received the news about my mother's cancer diagnosis, I took a leave of absence from my job and flew home to be her primary caregiver. During this time, I noticed that my symptoms were getting worse, but I put them on the back burner as my mom's health quickly deteriorated. Shortly after my mom's passing, I, too, was admitted to the hospital for what I thought was a flare up of my proctitis. I was very, very wrong. It seemed that between the time my mom had been diagnosed and the time that I was admitted, my proctitis became full blown Ulcerative Colitis and my colon was horribly inflamed and diseased with bleeding ulcers. I will get back to the fun that the next few months were for me, my family and friends as well as the nursing staff at several hospitals. But, I wanted to make it clear that eventually my Colon was removed through a surgery that I was told was my only way of ever leaving the hospital. I had an ileostomy constructed using my small intestine and I left the hospital thinking that I would have it for the rest of my life. But, through a change in the pathology and in consultation with my doctorsssssss (several pluruals required), I decided to get a reversal. This essentially moves the external pouch to an internal one. The basic idea is that they use part of my small intestine to literally make a J (hence the name "J Pouch") to function sort of like a colon does. Many, many months later, I currently find myself between operations 2 & 3, with the J Pouch created while I wait for what is known as the "Take Down" -- the operation that will take down my Ileostomy and attach my innards sort of like a normal person's. I will go to the bathroom pretty normally, I will not have anything external to my body and I will no longer have to worry about the fine art of layering clothes if I choose not to (can I get a universal high five?!). So, that's my number two. 

My number three was a completely undesired surprise. Picture it sort of like kicking a sick, blind puppy repeatedly while he's already down on the floor. (Now, I am known affectionately as the bitch to my nearest and dearest, but I think even they would agree that I was sort of like the puppy in that analogy). After returning to normal life, approximately five months after my first surgery and the creation of the ileostomy, I saw several of my bff's for the first time in a while. I was cheerfully told that I looked a bit yellow. I thought they were kidding. They were not. After another round of tests, more doctor consultations, three disturbing acknowledgements that my case was not "typical", several medications and one doctor-populated diagnostic roundtable (picture House, MD) I was informed that I have what is known as Primary Sclerosing Cholangitis (PSC). It is a rare, but not entirely uncommon disease often associated with people who have Colitis. They do not, as yet, know why. Nor do they know why I was blessed with both. Just lucky I guess... 

So, as of right now, I have been diagnosed with Raynauds, Ulcerative Colitis and PSC. Future tests will be examining the possibility of whether or not I also have Chronic Pancreatitis (And the hits just keep on coming...). But, I remain optimistic. Or as optimistic as someone who has been lucky enough to star in a cross between episodes of "It Could Happen To YOU!" and the forthcoming show "Your Genetics Suck."* I also take heart in the idea that I may soon be given a free set of steak knives when I reach some kind of new medical/health low (probably by someone who makes knives and thinks my life is pathetic. But, hey! free knives...)  

*This show is not real. Yet. I have great faith that Aaron Sorkin will read and fall in love with this blog and adapt my life story to the bigscreen starring the entire cast of the West Wing.        

Honest To Blog...*

I suppose that there’s a certain amount of symmetry in writing my first entry on the 23^rd of October. In addition to being the day that the Smurf’s first appeared in print (1958) and the first time that the UN General Assembly convened (1946), it is also my mother’s birthday. So many things we shared together; some out of necessity as all mothers and daughters do, but others out of a desire to truly participate in one another’s lives. This was a pattern that had ebbs and flows, as all relationships invariably involve, as we grew both together and apart, particularly during our dual ascension into the abyss: my tumultuous teen years versus her murderous menopause. But, I am gratified to say that when my mother did pass away, it was during a really great time in our relationship. The months leading up to her death were fraught with devastating news and incomprehensible realities, with timelines, medications and terrifying schedules. But, they were also a time for connections and laughter, for openness and clarity and for the certitude that we were (perhaps finally) starting to truly know one another.

And, unbeknownst to us at the time, there was also a deeper connection and an unforeseen symmetry to my mom’s illness and death; her cancer diagnosis proved to be the catalyst for my own health struggles with Ulcerative Colitis and Primary Sclerosing Cholangitis. But, unlike my mom, I can say almost three unbearable years later: I am still here. I am still fighting.** And both of these truths will still be true tomorrow.

I hope for this blog to be a place where my story can be a told. And by telling my story, I hope to be able to provide a forum for other’s who struggle with these diseases to share their experiences. Despite the serious nature of this first entry, I should warn you that my sense of humour has been warped by both circumstance and the company I keep** and will inevitably weave throughout my tale. I should probably apologize in advance, but I’m not really sorry because I really believe that sometimes the ability to hold onto laughter, even if inopportune and inappropriate, probably saved my life. To paraphrase something I read in a book once, “maybe if you’re given a handicap, you’re also given a few extra doses of humor to take the edge off.” Sometimes I feel like having a well-developed sense of humour is a pitiable weapon when compared to the medical and emotional battles being waged, but eventually I remind myself: I am still here. I am still fighting. I will continue to fight. And, if all else fails, I find that oxy contin helps level the playing field.

   

* That is a reference to the movie Juno. I will apologize in advance for this: I am a pop-culture junkie. I consider myself OCD, but I think that’s just a convenient way of labeling my behaviour when I become lost in the artistic accomplishments of others. Speaking from the perspective of someone who actually repels any type of creative expression, I really do find something extraordinary in artistic endeavour: music, film, television, novels… you name it, I’m a sucker for it. (And probably have an appropriate quote or lyric recitation to share with you in any given situation.)

** The fact that I am still here, and still fighting is undoubtedly a tribute to my colossally “too-good-for-me” friends and family. They know it, I know it. They sometimes like to rub it in. Again, assholes. Be that as it may, without them…[use of ellipsis is both for effect and because I do not have the vocabulary to properly articulate what my life would be like, (if it would even exist) without their continued support and encouragement (and, yes kids, calling me a dickhead and planning my future profile on “Intervention” continues to count as support in my book ]. So, thanks Team Crapbag. You rock my face off.