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.
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! 🙂
“Excuse me sir, if you don’t let me use your bathroom I am going to drop my drawers right here and use your floor.” Don’t tell me that as a Crohnie that thought has never crossed your mind or (if you have the balls) those words have never come out of your mouth in a public place. We struggle with this subject more than people could even imagine. But, thankfully, those important political people are finally taking their heads out of their healthy asses and listening. Which we are very thankful for (lol). If you aren’t familiar with it, a law was passed because of a 14 year old Illinois girl in 2005 who had Crohn’s disease and had gotten turned away from using a public restroom. She had that embarrassing moment we all are much too familiar of, a potty emergency where she didn’t quite make it to the potty. I can seriously sympathize with this, it has happened to me a number of times. This law is known as Ally’s Law. It states that a person with an eligible illness gets immediate access to an establishments restroom even if it isn’t labeled for the public. Although this isn’t passed in all states, they are working on it. It just takes a little research on your state’s website to find out if your state has the law.
In Massachusetts (where I live) Crohn’s and UC patients should have a “bathroom access” or “I can’t wait” identification card. It makes this whole process easier. You can receive one of these pretty easily. I received mine from the CCFA, which I became a member of and they automatically mailed me one. There are a few different foundations that provide them. I do know though, mine from the CCFA has my name and identification number so I can prove it’s actually me if someone is rude enough to question it. I have used it multiple times before whether it be to cut people in line (yes, that in fact has had to happened) or just to use an employee bathroom.
Being my strong stubborn self, I did get into a confrontation with a business owner once because of this. And I intend to get him in trouble. Over the years I have became much more knowledgeable about my disease and certain laws and such which has lead me to be very strong-headed about it. I was with my mom on the way to a mall by me when all of a sudden, I got the urge. As a Crohnie when you get that urge, there is NOTHING that is going to make it go away. My mom put her foot down on the pedal and got me as fast as she could to the closest store. It was a convenience store with a big white sign on the front door “NO PUBLIC RESTROOMS”. “Well this is great” I thought to myself, thank god we have this law now. I scurry into the store and asked very politely if I could use the restroom, I have Crohn’s disease and I need to use it now. He said “NO.” A very firm no. My mom followed in after me and she explained to him it is illegal now to turn down a person with a medical condition from using the bathroom. He simply said he didn’t care and no matter what I wasn’t using his bathroom. I was appalled. First of all how someone could be so rude. And panic set in. If anyone wants to talk about “anxiety” which on a side note, I don’t mean to offend people but people need to really reevaluate their “anxiety” and all the meds they take for it, its absurd coming from a person who could easily be on all the anxiety medicine in the world just for the pure fact I have to deal with this disease every day of my life, there are other healthier ways to deal with it. But anyways… my “anxiety” went through the roof and I ran next door to the pizza shop which also had a big white ‘NO PUBLIC RESTROOM” sign, but thankfully I could see the bathrooms so didn’t even ask I just ran! That potty emergency ended up working out, but others haven’t gone that way… If you know what I mean.
All jokes, sarcasm, and hostility aside, this isn’t an easy subject to address. But as Crohn’s disease patients we have no choice but to address it. It can be embarrassing and humiliating but I can promise you, YOU ARE NOT ALONE. We have all experienced it and more times than not if you quickly explain your situation people will be very understanding. The law is slowly and surely becoming in our favor and I highly suggest getting a “I can’t wait” card from the CCFA. Keep these things in mind when you have your next potty emergency and hopefully they can go a little smoother than we’ve experienced in the past! And don’t be afraid to SPEAK UP!! 🙂