Fall Down, Get Back Up.

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 ofIMG_1006 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.FullSizeRender (8)

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.

-xoMichelle

 

Just another day in the 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! 🙂

-xoMichelle 

Mentality is Everything

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 loFullSizeRender (7)ok 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 IMG_1613have 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!

 

-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

Buncha thanks!

Well considering it’s been a long time since I’ve written I have a lot to tell you all, assuming you were all wondering what’s been going on in this glamorous life of mine 😉 I just downloaded the WordPress app on my phone since I had gotten a new one and some of the comments people have left since I’ve been on last have definitely made me want to be more active again on this. I miss my fellow Crohnies on here!

Let’s start with the totally awesome news! My doctor did a colonoscopy and my disease was still active but much more mild. Because of this I am still doing the Entyvio infusions once every eight weeks. (side note: anyone on Entyvio- a fairly new drug- experience sever fatigue the 24 hours after infusion?) And just a fun fact, it was my first colonoscopy EVER that didn’t send me into a flare! Woohoo! That was back in December. Since then, I have gotten even better. My exhaustion is slowly going away. If you’re a Crohnie you know this could possibly be the biggest miracle ever because some people in remission still have that lag, especially if you’re on an immunosuppressant . I am back to working out at least four days a week and eating pretty healthy. I also started taking krill oil and a probiotic (the really expensive good quality ones you have to keep in the fridge, I don’t recommend taking the cheaper Walmart shelf ones). I really think these two things have helped aid in me feeling so good. I have gotten past my rebellious “I took so many pills for the first fifteen years of my life I refuse to take anymore!” stage lol. I realize how much these supplements help me. I do not take a multivitamin though, and I have my own personal reasons for that… Which I actually am probably going to write another blog on in the future. But anyways, it’s so nice to experience having energy. This sounds pathetic but I really never realized in my 22 years of life what it felt like to get through a day without being fatigued. It’s great!

Onto another topic, I have so many people to thank in my life lately. One being my mom, as you all know she’s my best friend and been my rock my whole life. But people have really stepped up to the plate per say in being a friend and being more active in my life. And I have tried my hardest to return the favor. I’m not going to name names because you know who you are if you’re reading this. I’ve had some of the same friends for a while now, girls and guys, and as you get older you appreciate those relationships more. You also learn who to trust and who will be there for you. I’ve done that this year and I’m very lucky to have some of these people in my life. So thank you!

I’ve also kept in contact with my old doctor from Boston Children’s which I think I’ve mentioned before. And even though he’s now across the country, he deserves the recognition. He helped me through some of my hardest times a few years back when my disease was at its worst. He dealt with several hospitalizations, arguing with Springfield doctors with the egos the size of Texas, me crying my eyes out laying in the hospital bed, along with all the frustration. I am so lucky to not only have been treated by him but developed such a good patient-doctor relationship with him. I truly appreciate everything you’ve done for me Dr. Essers! (If you are reading this that is haha).

Another person I owe a big one to is my current doctor. He’s probably the only reason I still have all of my intestines and I’m not pooping into a bag. He’s worked so hard on my case, tried so many different medications, consulted with people across the country for me (per my mom’s request at the mayo clinic lol smh). He’s also been a huge help with my transition from pediatrics to adult medicine. I’ve also developed an amazing relationship with him as well. I’ve been so lucky with the doctor’s I’ve had, and honestly I owe my life to them. They aren’t only phenomenal doctors but amazing people!

I just felt the need to thank these people. Without them I wouldn’t be half the person I am today! I will be back soon to write but in the mean time all my New Englanders stay safe with this crazy weather coming our way!

-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

Potty Emergencies 101

Image

“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 Imagefrom 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!! 🙂

-xo Michelle