Days like this make you appreciate the good days. The frustration of feeling like crap all the time lately is really getting to me. Anxiety of not being able to go anywhere unless there is a bathroom within running distance -__- All of it that we deal with daily has just been magnified lately. Oh, and by the way some of you that follow my blog. I did end up getting kicked out of school even after going all the way to the top. At least the President of the school had some sympathy for me, thankfully he let us have some peace in all of this. I just want to give a quick shout out to the Director of Nursing and Dean of Health at STCC for making my life a living hell for two and a half weeks, threatening me via email/letter, along telling me to consider a new profession. (I’m still a little bitter) But anyways, I’m no longer attending nursing school this year, talk about a knife to the stomach. Literally, the stress sent me into a bigger flare than I was already in. But hey, that’s what this life is all about isn’t it. You fall down, you get back up. Everything happens for a reason.
Working my two part time jobs is about all I have in me to do. And yes, I feel like a piece of crap sometimes to the people around me. I feel we (us, Crohnies) often get labeled as “lazy” or “unmotivated” but what a lot of people don’t understand is the strength it takes to get through the day and still keep a smile on our face while doing it. Pain medication has almost become a daily thing now, which I hate, just so I can get through dinner with friends, getting out of the house, etc. But that shit (excuse my French) takes a lot out of you and also makes me pretty emotional.. More than your average girl on her period lol Speaking of periods, being in a flare and having your period at the same time is I think one of the worst things I’ve experienced. Thankfully I’m on birth control where I only have to experience this every three months hah God bless you ladies with complicated Crohn’s cases that get your period every month. I feel for you.
Since my colonoscopy my doctor has changed my whole medication regimen. I came off of the Entyvio and prednisone (thank the Lord). I am now on Uceris, Methotrexate, and Humira… Again. This is my second time on Methotrexate and my third time on Humira. I’ve never taken them together though so hopefully this is the lucky combination. I had a meeting today with my Humira Advocate and after she left I was thinking to myself: “Okay, I’ve had Crohn’s now for over 10 years and in the past 6 of those 10 I have never been in complete remission but I’ve been close to it for a total of maybe 6 months”. That’s kind of craziness. I have hope though that something will work, sooner than later.
With no cure, that’s all that gets us through this disease is hope. At this point my biggest hope is that these side effects don’t throw me over the edge and have to come off of the med like every other time. I’ve always said with Crohn’s, any other disease, or in a perfectly healthy person: life is quality, not quantity. Even though a lot of the time my quality of life is pretty shitty, the days that it’s good makes it that much better. You don’t know if you’ll be here tomorrow so do what makes you happy and feel good at that time and place. Don’t worry about what other people think, keep that smile on and do you.
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. And if they think lawyers won’t be called and extreme measures won’t be taken, well they have another thing coming.
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.
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! 🙂
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 look 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 have 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!
I haven’t written in a while, probably because I’ve for the most part felt pretty good. Until probably a week ago. Had a few drinks, a handful of popcorn, less sleep than normal, stress from school, and while I was at it might as well have just have swallowed a few razor blades -__- lol and that was not a joke. I do my best to hide when I feel like absolute dog poo, but sometimes you just needa let it out (no pun intended). Besides my mom this is the only place I really let it out. No one really can comprehend the fact that one day you might be able to climb mount Everest and be on top of the world and the next you are on your death bed begging your nurse to feed you some jello. But us Crohnie’s have pretty much accepted that’s how life works for us. The hard part about it all is finding someone who can actually deal with that, or care enough to try to deal with it. It’s not a life anyone wished for but i’s the only life we have. Honestly, I wouldn’t trade it for anything because it has taught me how to live each day like it’s my last, and that isn’t just a cliché statement. I wouldn’t be the person I am today if I was never diagnosed with this stupid disease 10 years ago. Yeah, it’s stupid but I’m just thankful my life experiences have helped others along the way. Sometimes you’re going to get discouraged and that’s with anything in life. But when it’s with you’re health it’s a little bit harder. It’s beyond your control and sometimes you just need a shoulder to lean on. It’s actually really hard because most people around you, in your life probably think you’re perfectly fine but it’s those “commmmon michelle you can take that shot” or the “don’t be a pussy you can do it” (excuse my French) but that stuff will push you over. Be strong enough not to give into it. I’m kind of a hypocrite saying this but just take it from a veteran Crohnie. don’t give in.
I guess the take home message in this short blurb is make sure you have someone next to you that understands, or at least will be there for you.. even when you poo your pants :p
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.
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!