Just another day in the life.

I’ve had so many drafts typed up over the past few months but just haven’t brought myself to post, I’ve been trying to get away with anything to do with IBD, which sometimes is just necessary to keep sanity. These last few weeks have been some of the worst. I never expected this to happen a few weeks before school starts. I was really trying to avoid it all but you know you have to call your doctor when you have to get ready for work, meaning blow dry your hair and do your makeup, while sitting on the toilet -__- It’s about that time again, the time where my body decides to go all out sick-mode. What I wanna know is why and when this medication stopped working. I was feeling good before! Like really good! I’ve managed to some-what keep myself busy despite the fact potty emergencies have been REAL. This time around though the pain is almost unbearable and pretty constant. I do a pretty good job at hiding it though, probably why most of the people around me don’t really understand what’s happening unless they’ve had serious GI issues. Even when I’m in a lot of pain I still get out, hang with my friends, and put a smile on. It’s honestly the only thing that keeps me sane. I also still go to the gym, which I’ve gotten a lot of crap for, but I have to do what I have to do to keep my mind in a good place. Even if that means laying on the mat and stretching for a half hour, or lifting 5 lb dumbbells, it’s what I need to do. I could easily lay in bed all day and feel bad for myself but I choose not to. Today’s mindset hasn’t been the best, I feel pretty defeated since I just had to schedule an “emergency” colonoscopy for tomorrow. But it is all about your mind set. I’m lucky (well not lucky) but one of my friends has had digestive problems and I can tell she empathizes with me, it’s nice. A breathe of fresh air when most people get aggravated at me bagging plans or not making any in the first place.

What sucks about this all is I start nursing school full-time in a few weeks and for those of you who have read my previous posts, I am on my last resort medication. I have nothing new left to try. My doctor in Boston has consulted with doctors all over the country about my case. It’s actually a pretty scary thought because we’re all (my doctor, my family, and me) left with the question “what now?”. But I try not to think about it too much. I have trust in my doctor that he will work as hard as he can to figure my stubborn case out. Of course I have started on a heavy dose of steroids (60 mg of prednisone). I have waved goodbye to sleep, and can’t wait to welcome on the new pounds… NOT. I don’t think I’ve ever felt this frustrated before. I finally have my path somewhat figured out for the next couple years (granted anything can happen) but I haven’t even been able to go for what I want to do because this damn disease loves to come and punch me in the gut (literally) right before something important is about the happen. But what’re ya gunna do, you deal with the hand you were given and make the best of it. There’s far worse things that could be happening in life. I’ve always said being a patient like this, going through all this, is the reason I want to become a nurse. Every little obstacle and emotion involved in it will make me a better nurse. It has actually made me a better person.

I’m glad I got to rant a little bit, it’s nice to be back on here since I spend a lot of my time and a lot of effort hiding symptoms, complaints, and what not. I’m not quite sure who enjoys reading my complaining and babbling but that’s alright haha. So since I’m writing now I’ll update everyone who follows my blog with how the next few days go. Hope everyone enjoys the last few weeks of summer! 🙂

-xoMichelle 

4 thoughts on “Just another day in the life.

  1. I think the most important thing is not to give up hope! I know that your doctor is doing his best to find ways to treat you- but always stay hopeful that a solution will happen regardless if things look bleak! I can relate in the fact that I have exhausted a lot of my options for medical treatment, but the best thing I have done for myself is self advocate and educate myself as much as possible on the disease process, treatments, alternative treatments, and talking to people about what works and what doesn’t work bc everyone is different!

    But another important thing is to take time away for yourself and have “me” time and do fun things not related to crohns or colitis. That’s a huge thing for sanity as I am sure you are Aware!

    I also wanted to give you a virtual high 5 on not letting this disease stop you from having fun and you going out there and living life regardless! It’s not an easy task to do, and I often fall victim to the couch lol- I am ok with that, but I need to take a page from your book as well!

    Keep staying positive as it’s essential to the healing process! Wishing you health and happiness and good luck during your schooling!

  2. Hii!
    I stumbled upon your blog tonight and started reading through a couple of your posts. I am 24 and was diagnosed with Crohn’s when I was 16. My brother and sister also have Crohn’s, so I have had to deal with it a lot. I personally have been very fortunate and haven’t ever had to deal with continual bad flare ups, but my brother and sister are a different story. He had to have surgery almost two years ago to get a section of his intestines removed and has been on remicade ever since. I am also on remicade and both of us are currently in remission. Have you tried remicade or humera? (sorry if you posted about that already, i haven’t gotten a chance to read through them yet.)

    Another thing I wanted to throw out there is maybe Acupuncture or some sort of alternative medicine (in addition to what you’re already doing). I am actually going to school for acupuncture and oriental medicine right now and have heard about it being very successful in the treatment of Crohn’s and diseases like it. It’s so awful when treatments for Crohn’s aren’t successful and really lead you to a dead end. Especially when it leads to high doses of prednisone (i swore i would never go on it again after the first time i was put through that -_- ughh!) I honestly can’t imagine what it’s like and I give you so much credit for continuing to have hope! and for going to school for nursing, that’s so great! But really if you can try acupuncture i think it could be really helpful with controlling your flareups!

    I hope and pray you will find something that works for you! If you ever need someone to talk to about anything you’re going through with your crohn’s, I would be happy to listen 🙂

    • Thank you so much! I really appreciate your kind words 🙂 I have been on both Remicade and humira. I have a post from way back on the medications I’ve tried. I’ve exhausted all my options. And I actually tried many alternative treatments and therapies including acupuncture. They unfortunately didn’t do much. I have found though that meditating, as crazy as it sounds, helps me a lot because stress is my number one trigger. and ah yes prednisone is the worst!! I hope you and your siblings are doing well still (since I’m commenting so late, I just discovered these comments I have such a hard time navigating this haha) Thank you again!

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