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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A Little Complaining Does the Mind Good

You might ask why I am up right now.. this early, it’s 6:15am here in Mass. Well, it is because my joints and bones have been yelling for help the past 2 hours. Actually, not just yelling they are full out screaming. The pain I am in right now is agonizing, I don’t know how I’m really even thinking. Although my knees and hips are in the worst pain it’s all the way from my knuckles to my toes. It is more of an annoyance though because there is not a medication or anything that will make it go away. Rubbing and massaging my knees and legs helps, but it’s hard to have the patience to do it myself. I feel like an old woman, and if you are a Crohnie you know exactly what I’m talking about. It is probably my own fault though (in combination with getting ready for the clinical trial having to make myself sick basically) because I haven’t been taking my glucosamine and chondroitin, man that stuff is a miracle worker. I was on a good stretch of taking it but then sometimes popping huge horse pills every day can get just old. Until you soon remember the reason you started taking them in the first place that is..

I have been wondering, this is for my fellow IBD patients… I know joint pain is very, very common with IBD but do any of you get bone pain? When I say bone pain I’m talking a severe aching pain coming from inside of your bones. Yes it is as bad as it sounds. When I was on Tacrolimus I would get this agonizing bone pain and my doctor never had an explanation for (along with them not knowing a lot about a lot of the other side affects we have). I would be up all night long tossing and turning, face cringing, and sometimes even tears completely out of my control pouring out. I am not exaggerating on this one either.. It’d get so bad I’d make my boyfriend (at the time) stay up and rub my legs for hours (where can I find another one of those?! :p) My doctor then one day told me he read something about that medication causing bone marrow to swell and it would get worse with weight bearing. Which was exactly my case. This kind of made me cringe, I didn’t even know bone marrow could swell. But then again, pretty much anything in your body can. But I’ve been off of this medication for quite some time and I occasionally still get this awful bone pain, like right now as we speak. My doctor told me once it might be fibromyalgia… And I laughed in his face, not literally but I wanted to. I know that is just a label for people having pain that the doctors don’t know how to explain, he basically even told me that. Anyways, I’m starting to think it’s just the Crohn’s itself causing it. Any thoughts? 

This actually probably isn’t early for all of you other people out there who have work and are morning people, but not me. Not that I’ve ever been pregnant before but I could probably compare it to morning sickness.. It sucks. Most of the time I can’t eat till noon or later. thankfully this prednisone has kept my appetite. But some more complaints just because I’m pretty damn frustrated right now. I got this stupid itchy rash (assuming from the prednisone, I get it at least once every time I’m on it) so I stopped taking it for a couple days. Shhhh, my mom’s going to kill me. Consequently I started having bloody poo. Yeah disgusting. But this is probably the worst side affect I get. When it happens my stomach/abdomen area is in an awful amount of pain. As you could imagine, having canker-like sores all over your insides that are bleeding. Ouch. Well I decided to take 20mg of prednisone last night, rather than my usual 10mg, to kind of kick myself out of it. When I came off of it for a couple days it was pretty bad, not sickness wise, but the withdrawal side affects I’d like to call them, if that makes sense to you. It’s like my body is going through a withdrawal. Now, I know your not supposed to come right off of prednisone, but 10mg was a safe dose to do this from (just so you all know). I started getting acne like a 14 year old boy going through puberty… Not fun.. Or attractive. Hoping this 20mg will help a girl out and clear my skin up.

This post has been kind of boring but I felt the need to complain a little bit. Get it all out. Annnd I just had a hot flash.. Yeah prednisone does that to me. It’s amazing how fast the steroids actually work. This is kind of random but I’ve been thinking about how much my disease has evolved and changed over the years. Six years ago when I was in high school I had pretty much all different symptoms than I do now. It’s like an episode of NCIS where they think they have the killer the whole time but then realize it’s the wrong person. They have to solve the mystery all over again. I never had the pin point and all over pain in my stomach like I do now. I also never had as much nausea as I do now. It was more stomach aches, the sweats (I never showed a fever unless I was deathly ill because of all of the immune suppressants I was on), and lack of appetite. My joint pain wasn’t nearly as bad, but then again that probably gets worse with age.

Well, I’m getting pretty tired. Oh, I almost forgot! I have my first appointment to fill out paperwork, get blood work, and learn how the trial is going to work on Friday in Boston! I scheduled my fecal transplant for next week! Counting down the days to potentially feeling good, but not looking forward to that fun colonoscopy prep! *sarcasm* It will be one of two in a very short period of time. I hate those things. I’ll let you all know how it goes though! I’m going to try to get some more sleep and get my mind off of my aching limbs.

-xoMichelle