Never Stop Living

Well well wellllll. Here we are again. The dreaded sleepless nights due to this awful drug prednisone. Although you feel like a million bucks on it (besides gaining 10 lbs. in a week) these side affects are brutal. My stomach hasn’t quite responded as fast as it usually does with the prednisone but side effects are still raging. I swear I am going to need hip replacements at age 30 and that is no joke. I’m on this stuff three times a year at least. At least this time it isn’t via IV or a hospital visit, although I shouldn’t say that too fast hah.

With everything in this world that is happening it actually makes me look at it in a positive way. My brother put it perfectly, this world is a ticking time bomb. You never know when your time is up. You could get in a car accident, or drop dead tomorrow by an unknown cause. I feel good on prednisone and living in the moment is all I can do. Right now I chose quality over quantity. My options are limited and I start my last available medication (unless something better comes out) either at the end of this week or next week. It was actually quite scary hearing my nurse on the phone tell me it’s my last option for now. I’ll take all the time I can get feeling good because for all I know it might not work, or like I said I could drop dead tomorrow. This might be looking at it in a negative way but I’m really not. smileeeOf course I want and am praying for this treatment to work! But for God’s sake live in the moment! I might have more health issues to deal with when I’m older, I’ve already accepted that, but you can’t live life to the fullest being so concerned with the future. Because after all, you might not be here. It might sound a little harsh but it’s thinking this way that has put that spark of life back in me that’s been dwindling down to nothing but a dull ember. Yes, Crohn’s disease is horrible and I wouldn’t wish it upon the person I hated the most but life could always be worse and why not live it how you want RIGHT NOW. Some people will never have that option. You are lucky to be in the ‘now’ and there’s nothing better than the present, living in it. Put a smile on and count your blessings!

 

WARNING: rant in progress…

I’m sure you’ve all heard about the ALS ice bucket challenge to raise awareness of ALS. It’s been blowing up the media and it really frankly pisses me off the people who are shitting on it and saying people are doing it for attention and all that. I think anyone with any kind of illness, chronic or not, would agree with me. I don’t care what it going viral for the internet or if no money is being raised (by the way donations have gone out of control of ALS woo!) but if something like this was done for Crohn’s I would be absolutely ecstatic, I would probably cry of happiness. Awareness when you have a disease is the one thing you want. You want someone to at least try to understand what you are going through. No one fully understands until they are the one going through it but I have had people say “oh yeah you have a bad case of diarrhea all the time” and its frustrating because this affects every aspect of my life even though “I look good”. This actually is one of the reasons I initially started this blog. To help people better understand what we IBD patients go through. That was just a rant though about the latest rage on social media. So shut your mouth and mind your own business. If you don’t want to support a cause keep it to yourself because the negativity is definitely not needed, grumpy pants people.

Anyways, a friend with stomach issues brought this hilarious article to my attention and I really felt the need to share it with my fellow Crohnies. http://www.healthline.com/health/crohns-disease/would-get. I think every point in this post applies to me, even the jury duty one haha. Nothing worse than interrupting a court room because you urgently have to poo and then trying to explain yourself!

Like I keep saying over and over. Laugh it off, we poop a lot. Although it’s much, much more than that, shit happens (ha) and some people might not understand but you don’t need those people in your life. Find your number 12 if you haven’t already (in the link above), live in the moment, be happy, and don’t let anyone tell you otherwise. SMILE! 🙂

meee

-xoMichelle

HA! The Embarrassment Of It All

Tonight I realized how much knowledge I actually have for Crohn’s disease and gastro issues. I was very surprised with myself. Lately, I’m assuming it’s from writing this blog, I have had a lot of people approach me for advice and just to talk if they are going through these types of issues. It makes me feel so good when I can help someone and lead them in the right direction. I guess though that is why I started this blog. If that’s all I accomplish with only a few people it’s all worth it. If I had someone to relate to and talk to when I was going through my diagnosis, high school, embarrassing situations, and so on I think I would have handled stuff differently. I’m so open about having Crohn’s Disease, which some people are shocked at. When talking to people about their issues I can tell some people are hesitant when I ask their symptoms to tell me they go to the bathroom a lot and its mostly diarrhea… Not exactly the first thing you tell people. But hey, its life and we all poop! And us Crohnies, we poop a lot! lol Usually I’ll share an embarrassing story Imageand crack a joke to make them realize it’s okay to tell me. And once you say it the weight of the potential embarrassment is off of your shoulders and the person opens up a lot more.

I think the most important thing with this disease is to talk about it. I mean of course not the first thing I say to someone is “Hi, I’m Michelle, I have Crohn’s disease and I poop a lot.. Nice to meet you!” Butttt I do think it is important to talk about the psychological part of this whole life journey rather than just the physical part. A lot of this disease is in your head, not literally but we go through a lot and it takes a toll on us mentally and emotionally. As you might see a pattern, I think laughter is the best medicine. And another pattern you might see if you follow my blog is the jokes I make and how I reiterate the fact they help me get through hard days. And it’s not just a positive attitude. A positive attitude will only get you so far with something like this.

A sense of humor can turn those tears of frustration and home sickness while lying in that hospital bed into a small smile, even if just for a second (and yes, I’ve been there). I thank to god that I have someone who sometimes might have a little too much of a sense of humor about it (if that’s even possible! hah). You can turn a horrible experience with blood work or IVs being stuck a thousand times into a funny experience after the fact. Laugh about it. Don’t dwell on the pain. Yeah, sure, it’s not going to make all of that go away and it’ll still hurt at first but it will help you through even more than just a positive attitude. And as you start adding up these experiences through your journey you will have more to laugh about in the future!

Embarrassment is just a feeling our society has created. Everyone has experienced it in our lives. But, it is all in how you handle it. I’ve learnt over the years each embarrassing moment you experience makes you grow as a person. Each time you get stronger and stronger. As your average 21 year old girl I read Cosmo Magazine a lot. I love reading the embarrassing stories but even more I love reading the little blurbs on how the girl or guy could have brushed off the embarrassing moment. Real people telling them how they would have reacted if they were on the other end watching someone embarrass themselves. Every time I get embarrassed I think of this. We don’t tend to be embarrassed or humiliated but all you can do is brush it off, make a joke about it, LAUGH it off! Again, embarrassment is only brought on by you letting what people think and their opinion affect you. Society can be a toxic thing. You will become a happier person not letting these things embarrass you. Not only being a Crohnie, but with life in general. Image

Next time you get embarrassed, think of reading this post. Reevaluate the situation and laugh it off. Don’t let society dig you a hole to crawl into. Stand on the ground and be confident even when you’re at your most vulnerable. Sure it’s easier said than done but practice makes perfect. And if you do this, before you know it you will have even more confidence come your next encounter of embarrassment. No doubt it will always be there but handling it this way will give you a new light on the subject.

After tackling embarrassment and learning to laugh at different experiences whether painful or absurd you are on your way to being an enlightened Crohnie! When talking to people who seek me for advice or just a similar ear to vent too I always make this an important point. Your health and treatment is important but without a stable, solid, sane mind you’re health with be vulnerable to spiral out of control.

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xo’s&laughs -michelle 😀

p.s. I decided to no longer go through with the fecal transplant trial in Boston. Only 20 people are in the trial and I’m not comfortable with it being the first one of it’s kind. I am a pure guinea pig to get the FDA to approve another trial they will be able to do after this one is over and I’m not ready to be sick for three months just because of that. I started back on Stelara and am weaning down on the steroids. I got my second cortisone shot in my back today and you might have as well shot me in the lower back/butt because I am in so much pain AH! My first one wasn’t nearly as bad! But anyways, I will keep you all updated! Thanks for continuing to read! 🙂 OH! and my mom got a new golden retriever puppy! Check out how cute she is! Her name is Bella 🙂

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