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.
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!
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.