Mentality is Everything

Since I’m done with school for a couple weeks and killed this past academic year with my bare hands ;p I decided I’d write a little bit. I do kind of miss it; not writing as much as I used to. But, I can’t believe I have actually gotten through a WHOLE school year without getting sick or being hospitalized. I keep emphasizing to the people around me that “I’m done, I finished a year!” and they’re probably getting annoyed at this point like “okkkkeyyy we get it, you’re done” lol. But it is a huge deal for me. The past five years of my life (and throughout highschool), I’ve struggled with school. I could never figure out how to not get overwhelmed by a heavy work load and I never thought that I could actually do it. “You’re going to get sick” was in the back of my mind ALL the time. And when I saw all the time, I mean at pretty much every waking second. The struggle was real and this was probably the worst mindset a person could have. After having to withdraw twice from school, several hospitalizations/in home IV treatments per year I was pretty much at a loss when it came to my education. It didn’t help that the schools were not at all understanding especially Westfield State, I kind of wish I took more action with it but at the time I was so sick I didn’t even care. Regardless I decided I needed to do something with my mindset. I first started with encouraging myself (even if I didn’t believe myself I knew eventually I would) and finding a stress outlet, which was the gym. I think that’s truly when things began to change for me. Stress is hands down my #1 trigger to a flare up. It only takes me about two or three weeks of being stressed out to start noticing significant symptoms including- energy loss, bloody bm, canker sores in my mouth, severe joint pain, bloating, etc. Although these past final weeks of school have sent me into a little flare from the stress, I have changed my mindset to control my stress levels and it’s finally paying off. I have a 4.0 gpa to show for it!

The gym and living a healthy lifestyle has no doubt changed my life. Not only do I see myself physically looking healthier and stronger, my mentality is as strong as it’s ever been. It hasn’t been as easy as it sounds though. It’s taken me a few years to figure everything out and I’m still a work in progress (mentally and physically). Some people may call me a bit obsessed with the “fit lifestyle” but I just loFullSizeRender (7)ok at it as dedication. Yes I log my food, and yes I count calories/macros, but how else do you learn? It also allows me to make sure I’m getting the amount of food and nutrients I need to stay healthy. And not to mention keeps my brain occupied with something I really enjoy doing.  Being able to channel my stress, or anyone being able to do that in a healthy manner is one of the keys to happiness. I am now successfully able to block out negativity (which I was terrible at before) and it feels so damn good!

Not only is changing your diet/focusing on a healthy lifestyle and exercising is a good stress reliever but it can be beneficial to IBD itself. I’ve noticed that even when my body might not feel that great, my mind still does which is vital in living a somewhat normal life with Crohn’s. Your mind is everything.. Exercise also tends to calm down my digestive system and allows me to IMG_1613have normal bm! Craziness. I tend to not have the best appetite, so when I exercise it also keeps me hungry and my metabolism in check!  Another benefit of exercise is the benefit it has on your bones. Us Crohnies have most likely been on an obscene amount of steroids, which can long-term lead to breakdown of bones (osteoporosis), so this can be a great preventative method for IBD patients.

Well as this school year comes to a close I am a happier, more accomplished me 🙂 Not only am I closing a chapter but I am opening a new one and starting the nursing program at my school in the Fall. Life is only today, and you can accomplish anything if you really want it. Not to say there aren’t obstacles but take it day by day, moment by moment and you’d be surprised at how much you can achieve!

 

-xoMichelle

What The F&#*

Excuse my French, but today was that kinda day. The past few days I haven’t been feeling that well at all. Been going to the bathroom a lot and lost all fight in me for a second when I looked down in the toilet (after sprinting out of my microbiology lab) and saw blood… Like wtf. Can we catch a break sometimes?! Like longer than a month in the past ten years! Blood and mucus and literally running to the bathroom with every bite of food I’d eat. I tried to eat a lot of calories tonight even though it wasn’t the healthiest food choices I do not want to put myself in the position of losing a lot of weight. I’m hoping this will resolve itself without any medication but that’s usually not the case. I feel like this happens so often I mention it to friends or anyone and they just completely disregard it, and ignore it. It makes the battle even harder, I’m sure my Crohnie’s know what I’m talking about. Again, I never look for sympathy but it does make a difference, you might even make someone’s day better just a simple “feel better” or something. I know people around me get sick or annoyed when I talk about it a lot or say “I don’t feel good” a lot. But I don’t make this stuff up… I get sick of being sick. And the hardest part of it all is I take such good care of my body. Exercising, eating healthy, rest. And it doesn’t even matter.

It seems like it’s never going to end. Well I guess in reality it isn’t hah. I’ve definitely already accepted that but some days are much, much harder than others. It’s the unpredictable nature of the disease that’s the worst and I believe a hard concept for others to grasp. I mean I didn’t feel that great but I was still able to bust my butt yesterday at the gym and today walking to and from class was difficult. I either had severe lower abdominal pain or panic that I wasn’t close enough to the bathroom.

Actually something interesting happened the other day. In Anatomy Lab we were testing our hematocrit levels and my professor was describing how the buffer after separation (WBC’s and platelets) should be so small, to the naked eye it’s non-existent. Well, I saw mine.. Pretty damn clear too. This actually explains a lot. I could be having a huge flare and my blood work never shows much at all except for elevated WBCs. Woohoo thanks for the heads up A&P! -__-

Well getting words out and writing definitely helps turn my thought process around but I’m still frustrated as hell. Especially when I’d like to go out with my friends this weekend but I know if I push myself and even have one drink that’s a totally and completely horrible idea. Oh well, l guess life never gives us battles that we’re not strong enough to fight.

ibd

-xoMichelle

oooomffff, living the life.

bowels working ecard

Well I was trying to do my English work that was due at midnight but I cannot concentrate and I am having a horrible hot flash.

It all started a few weeks ago, not sure if it’s the season change or stress of school. I don’t think I’m stressed out about school  because I’m doing really good and like it but maybe subconsciously? By “it all started” I mean the exhaustion, countless bathroom trips, and severe stomach pain. I can see it slowly progressing each day. The other night I was up sitting on the toilet for hours and woke up in the morning with such severe stomach pain I had to take a pain pill to get out of bed and force myself to go to my anatomy lab this morning. Thank god I was done at 2:30. I came home and slept for about three hours. It really never ends does it.

Well, got off the phone with my doctor today. He sounded pretty disappointed, just as I was. This was really my last option available right now for treatment and it is clearly not working because I have constant pain. Even when prednisoneecardgoodI feel good, I still have pain. There is a treatment right around the corner but not sure exactly how far that corner is. I don’t know much about it other than it is approved for rheumatoid arthritis and in trials for Crohn’s. We’ll see. Before anything he wants to do a colonoscopy -____- But really before anything we can say good bye to this thin, proportionate face thank you to my 2934838753rd time on prednisone, which started yesterday. Already experiencing hot flashes, moodiness, and insomnia (as you can see it is 2am). And also awaiting my hip and knee replacements at age 30.

It’s constant frustration lately. I haven’t been having much fluctuation in my weight so yes in fact, I look good. Don’t, please, for your own good, ever say the three words “you look good” to a sick Crohnie. WE KNOW! This is in fact an invisible disease meaning unless you are my doctor with a camera up my butt you cannot see this illness. I haven’t been able to eat before 5pm most days without feeling terrible amounts of pain and several potty emergencies in the hour to follow (refer back to my post “Potty Emergencies 101” if you are confused as to what I am talking about…). I can’t even look at food lately. Never ask a Crohnie to finish their meal, or why they are not eating. I don’t care if it is a perfectly cooked filet mignon and a scoop of fluffy garlic mashed potatoes stomach achewith a side of perfectly seasoned mixed vegetables; it is nauseating. Also, don’t force a Crohnie to push themselves harder than they already have. We know what we can and can’t do and we are probably already past our limit of what we should be doing.

I do a lot of nothing lately. Not by choice, but because of this annoyingly life-consuming disease I’ve been blessed with, and the essence behind this whole blog of course. Sometimes I feel like I need to give everyone I meet a detailed medical pamphlet with every little thing drawn out about Crohn’s disease for them to remotely understand. I mean you will never fully understand unless you go through it, as with most situations in life.  But with Crohn’s a stomach ache is not just a stomach ache, “I’m tired” isn’t just “I’m tired”, and in most cases “I don’t feel good” is just a nice way of saying I feel like someone is ripping out my intestines and setting them on fire so try to be at least a little sympathetic or leave me the hell alone.

Crohn’s is indeed a huge pain in the ass, but it isn’t all shitty all the time.. ahah well some of the time. The moral of the story is you don’t know how strong you really are until being strong is the only choice you have. Yeah, it sucks but it could be alllloooot worse. All this talk about different potential cures on Facebook and social media I read all the time is great and all but, I tend to focus on the now, who knows we might not be here tomorrow. So hell, throw a smile on and in between your bouts of excruciating pain and embarrassing potty emergencies find a reason to smile. Laughter is the best medicine. And if you can’t laugh eventually about the weird, awkward situations you will encounter as a Crohnie because they are a lot more frequent than one would think, you’ll go crazy. So I threw in a few pretty funny ecards I found to hopefully get the rest of you Crohnies laughing hopefully at least a little bit!

doing nothing ecard

…said no healthy person ever lol

English can wait till tomorrow. Turning my AC back on because these hot flashes are worse than trying to put makeup on in the dead of summer. Sweet dreams errrrybody.

-xoMichelle

Who Said One Can’t Make A Difference?

One of my previous posts I wrote a letter to the President of Brigham and Women’s hospital about my stay. I had thought about it for a while and figured the first step in making a change or difference is letting them hear your voice. Basically, in short, I told her how awful it was staying in that small, cramped, white room for four days. Obviously, no hospital stay is roses and rainbows but I’ve had my fair share and this was definitely the worst of them all. My transition into the adult world was to say the least, a hurricane of emotions. Well, my letter must have made some impression because I got a call last week from the Brigham! We have been playing telephone tag for a little while now so I haven’t been able to actually talk to them but I made an impression! It’s crazy to think I did that. They’re actually listening! I never labeled myself as one to be proactive about that kind of thing, but this was different and so I went for it. It was a simple letter. I made a difference!

This just makes me think, imagine if everyone who had experiences like this voiced their opinion and was proactive about it. How much better could we make the world. It sounds corny, but it’s true. People do listen to you, they do pay attention. All it takes is for you to speak up. As cliché as it is but you miss 100% of the chances you don’t take. So go for it! Who cares what they say, if they don’t respond at least you tried. And even if you don’t get a response someone probably read or listened and now you have placed your thoughts in someone else’s mind to think about. All it takes is one person, one letter, one call. And more often than not, you will get a response.

They told me they’d take about a half hour of my time to ask me some questions. I don’t know what kind of questions they’re going to ask me when I talk to them, but I’m preparing myself for anything. I’m absolutely ecstatic they read my letter! I’ve been trying to come up with every possible question they might ask me.  I will write as soon as I here back from them and let you all know how my letter made a difference.

Next time you have a concern or certain experience that makes you think, bad or good, let them hear your voice! You never know whose listening!

Make-A-Difference

What is Your Relationship Status?

Even though I am only 21 years old I’ve still had my fair share of dates, flings, and relationships in my life so far. Having Crohn’s Disease has been a huge part of me dealing with this aspect of my life. This post isn’t just for those of you who have Crohn’s it is also for those who have a significant other with this invisible disease. I want to help each side of the relationship better understand dealing with this, specifically through my experiences. First of all, Crohnies, you need to know what you deserve and the type of person who can deal with this. Not everyone can deal with someone who is sick, and you have to realize this is okay because there are people out there who can. We just have to sift through all the fish in the sea. I can almost compare this to dating someone who already has a kid, it is a package deal.
holding hands
I’ve had boyfriends who didn’t know exactly how to deal with this. Which isn’t there fault, they don’t have the disease. At the time I probably should have been a little more understanding but then I think about it and I did exactly what I should have. I need physical, mental, and emotional support from someone (which any relationship should have) and I wasn’t getting it. For instance, I was admitted to the hospital for a kidney infection, kidney stones, and a Crohn’s flare up and was on watch for emergency surgery. At the time I had a boyfriend of only a couple months. He simply didn’t realize how serious it was so wasn’t there for me, and I took it hard. Clearly the relationship didn’t work but I think that it was the best for the both of us. I had to deal with the truth and be honest with myself as hard as it was.
The embarrassment of having to go to the bathroom countless times a day or the pain that comes along with it can be overwhelming to you when trying to meet someone new. It is probably the most embarrassing situation we can find ourselves in. I suggest breaking the ice ASAP. This is so important for a relationship you think is going to go somewhere. It is going to be an uncomfortable situation but figure out a way that is the most comfortable for you whether it be a joke, serious conversation, or being straight out blunt about it. You will know with the response you get how this person is going to deal with it. We have days and weeks of exhaustion, joint/body pains, abdominal pain, diarrhea, and bleeding, along with a lot of other things. A lot of people think we are “lazy” because we are exhausted a lot of the time when sick. They need to understand our bodies are drained and it’s even frustrating for us. We have countless doctor’s appointments, are always getting stuck for our blood, getting tests done, hospital stays, and even surgeries. Someone with patience is key. Sometimes we don’t even have enough patience to deal with it ourselves never mind worrying about someone else.
I think overtime I have kind of been through a lot of guys on dates for the simple reason of I have this disease. It is hard to tell someone and at times I thought it was easier to just stop talking to them so I would push them away. But now, I’m coming to the age and point in my life I’m looking for a serious long-term relationship. And actually, it is the perfect timing for this because the past year or so I’ve learned how important it is to be open about having Crohn’s. I’ve had some great experiences with people dealing with me, it isn’t always bad. When I was in the hospital at one of my many stays, me and my ex were on good terms and friendly with each other, and even though we had gone our separate ways he was still there for me. I was in the emergency room for about twelve hours and he was right by my side. This is what we need, Crohnies. We need someone who is a caring person and more importantly who shows concern.
Everyone deserves someone who will walk through the rain for them. Meaning, they will do anything for you. In our situation though it is more of someone walking through a monsoon for us. Being sick I think I have learned to be extra sensitive about things in life and also very observant. I put my all into relationships and the last thing I want is someone who doesn’t accept me for who I am or doesn’t seem to care. I’ve adapted the attitude that if you can’t handle it or aren’t giving me the support I need you can walk right out that door, because I don’t need someone in my life like that. I look at thinking like this as a positive thing. I don’t want to settle. That is really what it comes down to.
Relationships have a lot of different aspects to them. One being the physical part of it. Some people put more emphasis and believe sex is more important than others. But, having Crohn’s Disease, this can be an obstacle. It is hard thing for some a lot people to understand. Pain, discomfort, exhaustion all play a part. Understanding from your partner is vital. They need to know the reasons and an explanation which is our responsibility to give.
To me, being comfortable with someone is huge as it should be in any relationship between two people. As for having Crohn’s Disease, in a nutshell, I want to be comfortable enough with someone that I can fart in front of them. If I have to go to the bathroom when were out, or have a potty emergency while driving I want them to be able to put the gas pedal to the floor and get me to the bathroom! I don’t want to have to hide that, and you shouldn’t either. I want to be able to laugh with someone about the embarrassments I’ve had in the past. Of course this might be tough or uncomfortable at first but as the relationship grows if you allow yourself to be open about it, it will be 1,000,000 times easier. Allow that person to be your best friend. Because if they truly want to be with you for you, they will deal with it. They will voice their concern and help you get through the hard times. One experience I will never forget was probably the most embarrassing thing yet. I had a boyfriend who I was really comfortable with but we had never had the conversation of my stomach and the humiliating things that come along with it. I was over his house and he was in the shower, I got the sudden urge… I had to #2. I didn’t know what to do because he was in the bathroom and I freaked out. I grabbed my keys to leave, but it was too late. I yelled at his mom asking where the other bathroom was downstairs, but it was again too late. I had in fact, yes, pooed my pants. I instantly started crying. Thankfully I had my emergency kit in my car (extra pair of pants, underwear, wipes, toilet paper, wash cloth, soap, and then some). I cleaned myself up and bolted for the door. I left in tears and a pit in my stomach without even saying bye. I thought it was over, I was so embarrassed I wouldn’t answer his calls or texts. I couldn’t even imagine what he was thinking. I was gross, disgusting, all of the above. I got home and ran up to my bathroom to take a bath and continued to cry my eyes out. I was 18 years old, who does that at 18 years old? Someone with Crohn’s disease, that’s who. I was unbelievably surprised by him showing up at my door. He had contacted my mom asking what he should do he felt awful and came over. I knew he didn’t know exactly what happened but he obviously had an idea. But in the end, he was there for me, and that was all that mattered. He just held me and told me it was okay. That day I knew there were people out there that could deal with someone having this awful disease.
All in all, don’t settle. If your significant other is complaining about starting a life with you along with the obstacles having Crohn’s Disease gives then either make them more aware of what you need or get out of that relationship. Stress is a huge trigger for flare ups. Dealing with the disease is enough stress as it is, we don’t need someone to add to that. You will find someone that can in fact make dealing with this easier. I promise you, there is a person for everyone. And as I have inked on my body “If it’s meant to be, it will find its way”. Don’t give up on finding that special someone. Let someone come into your life and help you fight this battle.
happy couple

Bleh. Frustration, complaining, whatever you wanna call it.

Image

Today was a weird day. I was in kind of a depressed mood all day. I started my IV infusions of prednisone this morning. It was probably my worst day yet feeling wise. I was severely run down and my face was the color of the snow outside. I’m also starting to get sick and tired of being sick and tired. I had gained a few pounds but this morning I was back down to 90 lbs. I want to be able to be back at the gym and be able to do more than one thing a day. I went to dinner tonight with some of my girlfriends and our moms. This is a Thursday night tradition for us and has been for about 7 years. Going to dinner broke up my day a little and made me in a better mood seeing I was around people. But even being out for the couple hours I was, I came home and was exhausted. It’s crazy how little I can do. I feel pretty well when I’m home but that’s because I just lay on the couch and rest. As some people call it being “lazy” but sometimes that’s how life with Crohn’s is. I hate complaining, usually only my mom hears my complaints, but my frustration is just growing, and hey this is my outlet right. I’m as positive as I can be but sometimes you just have these days.

As I lay here hooked up to my IV, I can’t help but think why was I chosen to deal with this. Everyone has their problems in life, and deals with them differently. I wouldn’t wish this disease upon anyone. I’m envious of the people surrounding me being able to finish college on time and lead normal lives and hold down a job. I know I will have my time and my life will figure itself out but right now it just sucks. There’s really no other way to describe it.

I always try to put at least one positive thought in each of my blog posts. This effort has actually been helping me a lot. I guess I can say I am thankful this disease has made me as strong as it has. It could always be worse. I’m a strong person, but I couldn’t get through this alone. No way in hell could I get through this alone. It is something that eats you from the inside out. First meeting me you would never know I have Crohn’s. I look like any other twenty-one year old girl out there. And sometimes that is the hardest part. I have a love-hate relationship with this “invisible” disease. Obviously I don’t want that to be the first thing people find out about me. But sometimes it is too easy to hide. Or at least most of my life I’ve done a damn good job doing so. Not anymore though, I’m done hiding it. Take it or leave it, it’s me.

Writing this blog I’ve already had people coming to me for advice or help, and for people to look to me for that is amazing. Maybe this is why I was given this disease. To help other people get through their hard times. Crohn’s Disease isn’t who I am but I wouldn’t be who I am today if I wasn’t fighting this battle. And yes, it is a long, hard battle. But that’s life. Whattya gunna do.