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.