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Okay, okay, okay, okay, okay, okay…OKAY! I’m okay. I want you all to know that. I went a little off the deep end yesterday.
Had you read what I posted to Facebook and Twitter Thursday, you may think otherwise but I can assure you I’m on the right path. Does the possibility remain that my health could get worse before it gets better? Yes. Do I plan on laying back and not putting up a fight? No.
Before I share yesterday’s post for context, I’ll point out this is my first post on my website/blog in while and I realize it’s really got nothing to do with sports, which is what my blog has always been focused around. Subscribers can expect to see more posts related to this topic and new visitors can expect to be directed here again in the future rather than reading a long-ish post on Facebook.
Here’s yesterday’s post:
Please read…
I can easily say this is the lowest point I’ve been at with my #colitis.
I’m extremely grateful to those in my life that I live and work with every day though. I hope if you’re one of those people, you know that.
I’m desperate for the drugs to start working, the real drugs, not the bullshit band-aids that are the steroids and other supplementary meds which by the way have caused me numerous side effects.
If you know of my recent struggles you’ll know I’m open to admitting I have mental/psychological issues because of the far reaching effects of the colitis. Not easy for anyone to admit at the best of times but I’ve seen the ill effects of holding that stuff in.
I already told one person today I feel pitiful.
I’m down. Way down. But I love the idea of life too much to ever give up. I know I’ve asked for prayers and good vibes and really…it’s impossible to quantify how much impact those have but please feel free. I also accept spoons (#spoontheory).
I and many like me are desperate for a cure. I know I’m not the only one suffering from #IBD or a chronic illness in general and I know many have it much worse..as bad as my situation is.
I’ll get through it. I’m going to keep telling myself that because it’s true. I’m 6 feet over, not under. Some days though — today — I question everything.
“That which does not kill us makes us stronger.” -Friedrich Nietzsche
Please help find a cure by visiting http://www.crohnsandcolitis.ca.
Just because today I’m saying I’m okay doesn’t mean anything from that post was false or untrue or an exaggeration. I stand by what I said 100 per cent. I am at the lowest point I’ve ever been. I am near what I would call rock bottom, knowing full well that physically and mentally, it could get worse before it gets better. Thursday and today were the first two days I’ve actually missed full days of work exclusively because of my colitis and its far reaching affects.
I felt like I owed this update — 24 hours later — to everyone because so many have followed me for so long, whether it was when I was writing every day about hockey or because I post news articles I write for work, or for my recent attempts at bringing awareness to IBD (Crohn’s and colitis).
It is of utmost importance to me going forward to be selfish in the respect that I won’t hold back posting about mental health and obviously what IBD and colitis are all about. It is an invisible disease without a cure. There is no fix for what I and many others have, just band-aids. Unfortunately getting to a goosfraba or OM state is a lot easier said than done sometimes, as much as it’s recommended and encouraged. So that said, I will continue to post about my issues with the hope that someone out there having similar problems will see my positivity or my story that isn’t too much different from their own. Hopefully that person will be inspired in some form to keep their head up and not let a disease control their life.
I am fully aware there are a lot of people in this world, even in my own life, that have to deal with worse than I do. Yes, as bad as my raw deal is, others suffer more. I feel for those people. I am with those people. I am a support for those people as much as people are a support for me. That’s what I can offer those people. I can’t promise I’ll selflessly promote awareness about every disease on this planet, but I can pay it forward by being a compassionate human being who can relate to going through the daily pain of chronic illness. That is how I have and will give back.
If you are ever stuck on how to help me because you have no idea what I’m deaing with, I’ll tell you right now that offering up an ear or two just to listen to me goes so much further than most people think.
I’m paused at the moment not exactly sure how to continue. I know there’s so much I want to say but this is where I’d remind everyone perhaps that I want you to ask me about my disease. I want to spread the word. I want people to know about something not a lot of people know a lot about because without telling my story and without others like me telling their’s, a cure will surely never be discovered. I know I’m going to leave stuff out of this post but please ask me anything you ever want to know.
I didn’t know this until today. This is why many others on remicade refer to it as mouse juice.
I recently found out I lost close to 20 pounds in a six week span. I went from 145 to 125 after having my third infusion of Remicade (Infliximab) and that was certainly a jolt to my depression. I’ve always been a pretty slim kid, a runner for a decade in school, playing soccer, hockey, lacrosse and lord knows what other sports. So it was never a big deal my size but now that I’ve lost weight when I want to gain it, but physically can’t, I struggle with how to deal with this. I haven’t eaten a lot in that span, because any food amounting to more than a small meal for a normal person, and I have issues that cause me some distress. I obviously can’t gain weight if I don’t eat and let’s be honest, taking Vitamin D and B12 tablets just isn’t going to solve this issue by themselves. So now I’m skinny as hell. I hate looking at myself without a shirt on.
You could honestly find a meatier rack of ribs at Montana’s Cookhouse.
I’ve struggled extra hard since May. Yes I had an accident. Yes a car was involved. It was however not what people commonly refer to as a car accident though. That was one of the harshest realities I’ve faced with my colitis and it’s affected my brain ever since. I have the fear of god in me every time I know I have to leave the house and yes I travel everywhere with a roadside emergency kit. Imagine having to live like that…every single damn day. I wake up, bathroom. I shower and get dressed, bathroom, for hours before I can leave for work. I arrive, bathroom. I have to go the scene of a fire, bathroom. I leave the scene of the fire, where’s the nearest grocery store or gas station? I eat something, bathroom. Time to head home, bathroom. Bed time, bathroom. It’s bloody awful, thankfully for me for the last four or five years, not literally bloody. If that’s TMI, for you, well, sorry not sorry.
Then there are all the drugs (remicade, prednisone, lomotil, pantoprozol, iron infusions and those are just the ones I’m on) and conversations with doctors and nurses and case managers and drug coordinators. I had a blood test this week, another next week. I have an infusion next week. I have to do a stool test this weekend (happy happy joy joy). In October, I’ll have my second colonoscopy since May (also hurrah…not). A big plus though that I cannot not mention is the quality of care I’ve received since moving to Alberta. Second to none hands down in all the years I’ve had this stupid affliction.
I went golfing last Saturday and those four hours of frustrating joy meant not eating all day. I didn’t get home until 4:30.
This morning I came up with a potential resolution for 2016. This plan can only be initiated if the drugs start to work though. I’m not going to share the details because then I’ll be getting my hopes up on it and last time I got my hopes up for something too quickly (the remicade), I became depressed because it wasn’t having the desired affect. Hopefully it still does but that’s not the point. The point is if they do begin to work, I have something exciting to share with you all a few months from now. First, I need to prove to myself I can gain some weight and I can get some fitness back.
Here is how I’ll close. Today it came closer than ever to full circle for me in terms of realizing how great of an employer I have in the Jim Pattison Broadcast Group. Obviously I also know my family has my back and I have friends that support me. I will not give up on the notion that better days lie ahead for me and while it sucks to play the waiting game and wonder if anything really is ever going to change, I know I don’t have a choice. During that time I have to be all my body will let me be, physically, mentally, socially and even spiritually.
Hell, I also have to prepare myself for the day (which will come sooner than I think) my daughter understands better what is going on with her Daddy. I have to be strong for her. I have to be strong for my fiancee. I have to be strong for myself because if it’s going to get worse, it won’t be because of anything I do.
So I’m okay. I’m not great. I’m not good. I’m chronically ill. I’ve been sick every day for the last eight years. And I’ve cried many times over the last several weeks and months. I’m tired, but I am okay and I know it will get better.
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Vancan Outta The Blue 