A Fork in The Road

It was Thursday morning a week into nursing school, the sun was shining, and I got up bright and early to go study before class started. As I go through my notes my phone lights up with an email. It is from the director of nursing at STCC. The email is telling me she wants me to meet with her and the Dean of the Health Department to discuss my “situation” right now. Right off the bat this didn’t give me a very good feeling. I had contacted her earlier about any further steps I needed to take regarding my vaccinations. I am on medications for my Crohn’s that prevent me to receive live vaccines (which I’m sure many of you Crohnies are familiar with). Unfortunately when I got my titers done I had not converted over with almost all of my immunizations. I think the only thing I was immune to was Measles.

When I found out this information over the summer I contacted to school immediately and provided documentation for everything. They told me all I needed was a doctor’s note stating I cannot receive these immunizations. After I did this I didn’t hear from them so I assumed everything was fine. Well, needless to say they are now trying to kick me out of the program due to medications I’m on and not being able to receive my immunizations. They told me I am not health cleared because I have not received these shots. I do understand this is important and that they have to hold up to the contracts… Buttttt, what baffles me is anyone can refuse any vaccinations for religious reasons (they have forms for that to fill out) and still participate in the program and clinical. Discrimination? I think so.

When I was sat down with the Dean and director I was told I need to withdraw immediately to prevent losing money (by the way, this was the last day of the semester to withdraw without penalty, coincidence?). They did tell me I would have automatic readmission to the program but if I were to go back on all of these immune suppressing medications (I am on methotrexate, prednisone, and Uceris) I would then have to withdraw again. She proceeded to tell me, “I should really consider a new profession”. Rude. If this wasn’t a knife to my stomach I don’t know what would be. And also, am I the only sick person who wants to become a nurse? Like come on, let’s be realistic here this can’t be the first time this has happened.

I have worked so hard to get into this program, I lost it when they told me this. They let me sit there and cry in front of them while they just stared at me with blank faces. After leaving I thought about it more and was absolutely not withdrawing. This was not right and something about the whole situation had to be illegal. I called my mom and doctor and they were on it like flies on shit. They clearly did not know who they were messing with. To me it sounds like they just don’t want to be bothered filling out extra paper work and/or make special arrangements for me (find a place I can clinical at). Oh, and I didn’t even let them tell me I can’t attend lecture and labs. I was not going to fall behind while this gets figured out.

The past five years of my life I have struggled to stay in school due to health issues. I have had to withdraw twice due to hospitalizations and I’ve taken multiple semesters off because of it. When I finally am feeling good and am ready to go to school full time they just have to knock me down. I’m not an easy one to knock down though. My family and doctor have both worked really hard to keep my psyche in check because this disease is so wearing on the mind. When you’re not able to go to school or work you feel useless and like you’re not going anywhere in life. I’ve had this feeling many times during my life but it vanished when I got accepted into nursing school. I could finally see my future and what I was meant to do. This isn’t just school to me, this is the rest of my life. It is what I want to do for the rest of my life. Even if in the end I am not able to attend nursing school, they’re not going to get out of this one without a very big fight.

Life isn’t always fair, but in my head I keep saying over and over again: everything happens for a reason. And I truly believe that. Don’t just be a fighter against your disease, be a fighter in life.

-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

“Hey, it’s me again!” -CD

Hey! 🙂 First of all, today marks almost exactly 13 months of me having this blog! I couldn’t be happier with the outcome of it so far. I’ve talked to people all over the world through this and have met some truly amazing people. This past year has been nothing but a roller coaster. It’s been calming down lately being on Entyvio, but side effects still prevail… You have to weigh though what you’re willing to go through to feel good, and compared to some of the stuff I’ve been through these side affects are pretty miniscule.

But on another note, Crohn’s never fails so remind you “Hey! I’m still here, don’t forget about me!” even when you’re at your healthiest. I’ve had a few days here and there with severe stomach pain and exhaustion. A lot of people think that just because you’re having a bout of feeling good, it means your cured. Well people, there is NO cure for Crohn’s disease! I know people who don’t experience it have a hard time grasping it but it drives me crazy when someone thinks I’m cured just because I’m feeling good right now. We just go into remission (sometimes clinical, sometimes you just know), and that could last weeks, months, and for the lucky ones even years. But it is so unpredictable it could come and bite you in the ass within seconds, minutes, or hours. Don’t get me wrong, overall I am still feeling pretty great, but I’m starting to think my body is programmed that after I feel good for a few weeks it just sends a little reminder, you’re still sick! Don’t forget! lol It’s really frigggen annoying. The other day I couldn’t eat anything without having severe abdominal pain I literally had to concentrate on breathing just to get through them. They’re almost worse than the really awful flares and hospital stays because they interrupt your workout, delicious dinner, class, or whatever you’re doing just to remind you you’re not completely normal. They interrupt your times of feeling so good you almost forget the disease is even there.

I haven’t been in remission in probably 10 years, and if you were to ask my doctor, looking at my latest colonoscopy, I’m still not “clinically” in remission, but I have very mild active disease. Now seeing it written down that sounds crazy I have been constantly battling this for ten years with few to no breaks from it. I’ve been diagnosed for about thirteen years, but I definitely had it several years before my PCP just had a stick up his ass and wouldn’t give me a referral to a specialist. But, like I’ve said before having this disease has made me into who I am. And like people say some things keep you humble, this disease is definitely one of them. Each little “hello, I’m still here” puts it all in perspective. It allows me to live everyday to the fullest because it literally could be your last.

I can’t believe it’s already been a year I’ve had my blog. Thank you to everyone whose been following along and whose read some of it! And thank you to all f my fellow Crohnie’s who have supported me! 🙂

But, it’s time to watch the Bachelor 😀 I’ll catch ya all later!

-xoMichelle

WHHYYYYY

Okay, so my title was a little dramatic. But why not. And this isn’t a negative response, it’s actually a liberating one. Why do people think so much, why do people care so much what others think, why not just live your life how YOU want it. I think that is the only way to ultimate happiness. Recognizing this for me has been a big step. People are so afraid of disappointing others, they’re so afraid of what “might happen”. The only person in life you should be truly worry about disappointing in your life is yourself. It is inevitable you will disappoint important people to you, there is no way around it. But they will get over it. Freaking live your life and stop being so afraid. Go back to school at age 50, go for that interview you didn’t think you’d ever have a chance at, talk to that handsome/gorgeous intimidating guy/girl you see everyday at work or in the gym, stand up to that prick boss of yours. If you don’t do it, you will never know. And you know what’s worse than a potential rejection, the constant wonder of “what if”.

Don’t be afraid to fall in love, take a chance, risk everything, go for it. If it doesn’t work out at least you tried and you can move on without wondering. Work towards a goal, set your mind to something. Don’t let life make you it’s bitch, make life YOUR bitch. Do with it what you want and if someone doesn’t like that then they can go back into their little hole of content. We all want to be content with life, when we all should be striving for ultimate happiness. Of course, life isn’t all rainbows and butterflies but it’s what you make of it that matters.

I have recently noticed my whole life I have been looking for something or someone to make me happy. When my key to happiness was right in front of me, sounds corny (well it kind of is, but I like being corny sometimes), and I mean it wasn’t literally in front of me but it was me, myself. You can’t find happiness unless you find it in yourself first. I’ve read a lot of blogs and a lot of articles and a lot of all that stupid stuff on Facebook everyone reposts about how awesome it is finding love a boyfriend and yadda yadda and it all brought me to this conclusion. If I can’t be happy with myself, I won’t be happy with anyone I don’t care who it is no matter how much of that shit I read.

I’ve never had set priorities and goals in my life that I acted on and I often blamed it on my disease. Not that it hasn’t caused me a substantial amount of frustration and made me put my life on hold at some points. Obstacles are inevitable with such an unpredictable disease, in fact life in general you will always have them. I have always laughed about having Crohn’s and stayed positive about it but I have let it control some of my long term goals. I was afraid to go back to school and I was afraid I wouldn’t be able to get through nursing school without getting sick. I was ultimately afraid of success because there was a chance of failure. I wanted it, but I was too focused on the risk and not the potential reward. I have reached a point where I have real goals and I will reach them, even if it takes me longer than most. Yeah it’s nice to hear someone tell you they are proud of you, but an even better feeling is confidently being able to say “Yanno what, I’m really proud of myself”.

I have never been so happy with myself as an individual, ever. Yeah things go wrong but when they do me being happy with myself allows me to get over it and continue on. I’m not saying my life isn’t pretty frustrating right now because it is but I’ve accepted the fact even when it is there’s still no reason not to be happy about something. Right now the most important “goals” in my life are school and sounds mediocre but staying fit. This is one thing I know I can have control over and it is really an awesome feeling, especially doing this while battling a chronic illness. My quality of life right now, in this moment, is all that matters and I know I can optimize that by staying physically fit.

But anyways back to WHYYYY (lol). I just don’t understand it anymore. Life is one big leap of faith. There’s no need to complicate life. If you want to say something, say it! If you want to do something, damnit, do it! Stop hesitating. Don’t do something if you don’t want to. Be a little selfish sometimes. Put your trust in someone, they might surprise you. Hell, you might surprise yourself! But also on a side note, never forget the little things in life. Do something nice for someone else, compliment someone, make someone smile. We feed off of each other’s energy, and don’t you feel good when you’re the reason someone might be a tad bit happier today? Just let go and stop being so concerned with what bad might happen, because you never know it might just end up being the best thing that has ever happened to you.

life

Annnnd that’s a wrap on my corny, inspirational, venting sesh. Take it for what you want 😉

-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

A Step In The Right Direction

Hey you guys! 🙂 Haven’t written in while. I have ALOT to update you all on. My life is taking a turn for the good and frankly I don’t know what I did to deserve such a perfect situation coming my way, I will write about my great news later in this post because I can’t hold it in anymore. Health wise I’ve been feeling phenomenal. I could use a little liposuction on my face, per usual of a semi-long dose of prednisone, but other than that I’m feeling great. Unlike the common complaint of a Crohnie, laxatives have been in my daily med regiment, and I mean twice daily. HELP! I am certainly not complaining, but looking 15 weeks pregnant due to being bound up isn’t the most attractive or comfortable thing. Miralax has been in almost every drink I consume (thank god it is tasteless) and Dulcolax every other night. Apple juice, apple juice, apple juice is all I drink. I feel like I am constantly prepping for a colonoscopy! I guess I am normally a constipated person when I’m not sick. Who woulda known. Here I am again, sitting here talking about poo. This is a normal conversation for me though. I never used to be able to do this, but like I said everyone poops, and if you’re grossed out right now stop reading. POOOP. I said it and I’ll say it over and over again. Now I am just comfortable enough to blurt it out the public via the internet. But the other night I went out for a drink and apps with my friend, lets just say I was on the toilet for hours that night in severe abdominal pain due to constipation. Never eat a lot when you’re bound up… Or you will regret it. I could’ve used a morphine button all night. I thought I was experiencing a blockage, but I wasn’t… Just a little, okay ALOT of hard poo. It was Terrible, with a capital T.

Well aside all that shit-talk, guess what?! I’m taking a huge step in the right direction in my life. I put in an application for an apartment! My own place! And he will rent to me! I find out tomorrow or Tuesday when I move in. Some people might call me crazy, spending the money and all that on a place down the street from my house, but it’s my life, and it’s what I want to do. A lot of people don’t know my story. I’ve never had the opportunity to live on my own, go away to school, or any of that because of my stomach. Having Crohn’s Disease is a constant battle of ups and downs. You never know what is going to happen. You could be perfectly fine one day and undergoing emergency surgery the next. And yes, that happens a lot to a lot of people with this disease. It keeps you out of work, school, and functioning in everyday life. Finding and keeping a sense of independence is hard with this disease. So, this is huge for me. After a few years of work and saving money, I am finally in a financially okay place to afford an apartment of my own. Yes, I might be surviving on spaghetti and Ragu, but that’s life. I want to grow up and have independence. What time is better than the present? None. I’m taking a leap of faith and doing it. Thankfully I have such a supportive mom that she is guiding me in the right direction. I’ve been looking around at different places here and there over the past couple years, but this couldn’t be a better fit for me! I can bring a dog with me, which is HUGE. That was a deal breaker at most places. The apartment complex is really safe and the landlord does an awesome job keeping it up. So, I find out tomorrow or Tuesday when I will be moving in! I’m so excited! I can’t wait to tell you guys more about it! It makes me a little nervous being on my own if I ever get sick, which will happen at some point I’m guessing. But, I am right down the street from my family which is great. And, I will deal with that when the time comes.

Well, still taking the Trazadone to sleep because of the prednisone, and I can feel it kicking in. I know that because I will start thinking and talking nonsense and I can’t really see straight hah. Man, does it work though. I wake up at a decent hour fully rested and ready to go. Gotta let it work though!

Sweet Dreams 🙂

-Michelle