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

 

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

Pushing Myself to the Brink

So today was my first infusion of Entyvio. This may sound like a foreign medication to most, and well that’s because it is. It has only been FDA approved since May and then came out in June. I knew this day was going to come that I’d start on my last option (for now), but I just wasn’t sure when. Starting a new medication for me is not exactly a new thing. I have been on almost everything in the book as you all may know from my previous posts. This medicine is a lot like Tysabri (which is a bit more popular, used for CD, UC, and MS) except it doesn’t seem to have the side affects that Tysabri hentyvioas, especially the PML virus which is scary as hell, look it up. When my doctor told me that it was relatively low risk and an infusion once every six weeks I was in! I’m always excited to start on a new medication because it kind of gives me a new light on things, “maybe this will work” goes through my head every time. But this was a little bit different.

I am having so much more pain than normal. I’ve been on prednisone for a week now and usually I am eating the whole household and feeling like a million bucks. Not this time, something is different… I was keeling over with pain this past Sunday and had to resort to pain medication, which I hate to admit. I hate the thought of having to take pain medication, I can usually silently manage my pain and most of the time the people around me wouldn’t even know. Not lately, it’s been pretty unmanageable pain. And the worst part about it is I’m having flank pain too as they call it… Aka possible kidney stones. Wonderful.

I can literally feel my insides swelling. I’m not talking bloating I’m talking tissue swelling. It sounds gross but it’s pretty damn uncomfortable. I eat and I swell. It’s been off and on but also been making me a little nervous that something else is going on. Hopefully not but we’ll give it a little while for this prednisone to work some more and then figure it out.

This all makes me nervous because I am finally ready to grind down and go back to school full force this fall. I have my classes set-up and start next Tuesday towards applying to the nursing program this coming spring. This weekend is also my 22nd birthday and I was hoping to get out and have some fun! I probably will, becIMG_8188ause that’s what I do.. I push myself even when I don’t feel good. Sometimes probably a little too hard but oh well. Like I say “it’s my life, let me live it”. It’s actually KILLING me right now to be sitting in bed exhausted and in pain because I bought some new Nike sneakers and gym clothes today on my way home from my appointment and all I want do is try them out! Lately going to the gym has been the only thing mentally keeping me going. It’s my happy place to feel good about myself and blow off some steam. Even if that only means speed walking on the treadmill and lifting 5 lb. weights (when I’m having an off day physically). Actually I might do that later tonight. Hopefully I’ll be feeling a little bit better after a nap.

It’s frustrating having to be cooped up. I mean I don’t have to be but my body just reaches it’s limit sometimes and I have to take a step back. I’m not sure if lack of sleep because of prednisone or the new medication that did it to me today but I can barely function right now and these hot flashes (prednisone side affect) are god awful. Today I wanted to make it a fun day in Boston with my mom after my appointment but prednisonemy body was telling me otherwise. We headed to the Wrentham Outlets after I was done with the infusion and it lasted about an hour. I was so fatigued, nauseated, and swollen we had to leave. Not to mention my extremely crabby attitude and mood swings (also due to prednisone) didn’t exactly make for a fun time.

Now, this is all just a waiting game. Pushing through each day while I wait for my body to hopefully react in a positive way to Entyvio. I have another dose in two weeks, then four weeks, and from then on every six weeks. My doctor told me it could be up to three months to see how much it is potentially going to work. I’ve decided though, unless I am in the hospital I am not going to let it keep me from school this time. I will not withdraw this semester, actually even if I am in the hospital, I will do whatever I can to keep at it. I need to, for my own mental well-being.

Having an invisible disease is wearing on the mind. Very wearing. People assume because you look good and push yourself that you’re fine. I don’t blame them because how would they know unless they’ve experienced it? Sometimes though I just want to have them walk one day in one of our [Crohnie’s] shoes. It would probably change their life, actually not probably, it would change their life.

-xoMichelle

 

 

Being Healthy With Unhealthy Insides

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I’ve been doing a fair bit of research on this new concept health gurus have put out regarding “clean eating”, gluten free diets, and those different lifestyles. Although I have always been an athlete and active person I haven’t paid a lot of attention to my diet until I took a exercise science and nutrition course. I then realized, it is a very important part of being healthy and fit. Although I wasn’t able to finish the nutrition class I learned a lot and became very interested in health and fitness, I even thought about majoring in nutrition.

Having Crohn’s disease doctors and nutritionists always said I had to stay away from certain things, follow a gluten free diet, and so on. I never thought my diet actually affected me and my insides that dramatically. That was kind of ignorant for me to think because I have a digestive disease lol. So this past year I’ve read a lot and tried some different things that I’ll share with you all. I realized I can be healthy, but I have to tweak my diet so my stomach doesn’t flare up. Now, this of course is different for everyone because unlike most diseases Crohn’s varies SO much from person to person.

First, I tried “eating clean”. This meant, everything I ate was fresh and no processed food or extra sugars. I ate only fresh fruit, fresh veggies, natural peanut butter, and things like that. Nuts, seeds, whole grains, and homemade everything. NO extra added sugar what so ever, the only sugar I ate was the naturally occurring sugars in food. Well, this was a recipe for disaster (no pun intended). All of the fresh food made my stomach burst into tears. The pain, it was unbearable. Although I didn’t show other signs of a flare this definitely irritated me to no end. Now even though it pains me to think (not literally), the processed food for some reason sets better with me.

A funny story that brings me to actually (I get side tracked pretty easily). When I was younger the only thing I could eat in a big flare up was McDonalds chicken nuggets. Nothing else. Gross, I know. My doctor questioned it but as with Crohn’s I would rapidly lose a large amount of weight and anything to keep the weight on he would say “go for it”. I’m not sure if anyone else has experienced something like this before, but it is even odd to me. I can’t say anymore that McDonald’s does me good, but my symptoms have also changed substantially as I’ve gotten older (another mystery of Crohn’s disease). Now, during flare-ups because I have so much pain and bleeding I rely on Powerade and packaged soup.

But anyways, I stopped “eating clean” and now I just eat healthy, or my kind of healthy.. I don’t obsess over my diet but I make healthier choices. When making healthier choices and feeling the results, grabbing for that cookie isn’t as tempting. But, if I want smoothiethat cookie, or a bowl of ice cream bring it on!

Another rage now a days is cutting out carbs. I would never and I could never cut out carbs completely. They say a healthy way of getting carbs is by eating whole grains, nuts, seeds, and all that stuff that is absolutely TERRIBLE for us Crohnies. Like I said, I tried this… and I paid for it with days of pain getting up to an 8 or 9 at times. So now I just stick to getting carbs and sugars through fresh fruit (mostly without the skin due to it being harder to digest) and tortillas and things like that. But, if I want a big fat bagel, I will have one. I think that is the most important thing in eating healthy. You can’t obsess over it and if you want something every now and again, have it! Also, an easier way of eating my greens instead of a salad, or even some cooked veggies are hard to digest, I put spinach or kale in smoothies. This sounds bad but its actually delicious!

Another tip for Crohnies: when you’re having a bad day stomach wise a good option is fasting. Not completely but usually I’ll pack my fridge with fresh or frozen fruit and do a day or two of JUST smoothies or if you have a juicer that works too! On these days I make sure I drink plenty of water and 3-4 cups of green tea (which is a great detoxifier too!) A liquid only diet is something doctors would do way back when (and some doctors still recommend it) to give your insides a break. On these days that I do this I usually don’t go to the gym. I sometimes will actually get in the routine of this once or twice a week even when I’m feeling good. It gives my body an extra boost and motivates me when I get off track and have been eating badly.

I have a secret too. Food is huge with keeping you “regular” if you know what I mean. And I’m talking everyone, not just people with digestive issues. My dad has sworn by the cereal Total. I didn’t believe him until about two weeks ago when I tried it. When I’m not completely flaring, I am mostly constipated (one extreme to the other lol). I had a HUGE issue with this. I was taking laxatives daily, and tried just about anything. Well, I stopped being stubborn and listened to my dad and WOW, worked like a charm! One bowl a day is all I needed and if I don’t have that one bowl a day, I look 5 months pregnant with all of the gas and poo stuck up there, no exaggeration. It’s not just the fiber either. I’ve tried taking fiber, eating more fiber. It’s the type of fiber and combination of things in it. It is also awesome for getting all of your vitamins! No need to take a multivitamin (which are overrated if you have a balanced diet and aren’t deficient in anything).

Another part of being healthy is getting regular exercise. I’ve shared converworkoutsations with people who would love to go and workout but their joints are just too bad. I can sympathize greatly with this but if you have this problem go back and read my post on my joint pain and what I take for it, it works wonders! I try to get to the gym ATLEAST 2 or 3 times a week. It boosts my mood, especially if I haven’t been feeling good and it also keeps my physique even if I only have the energy to walk on the treadmill for a half hour. Since my back injury I’m pretty much back full force but I have noticed exercising my core takes a toll on my stomach. It sounded dumb to me at first but if my stomach muscles are sore from a lot of ab workouts I tend to have intestinal pain and tenderness a couple days after (not just my abdominal muscles, I can feel the difference). I don’t know if any of you have but I thought it was a little weird seeing as this hasn’t happened to me in the past.

I take pride in my body and even though I like my carbs and sweets (sometimes, I don’t have a huge sweet tooth) I think it’s important to realize what you’re putting in your body, especially with a digestive disease. Food fuels your body and most of the time if you eat like crap you’ll feel like crap. Most of us Crohnies can’t change our lifestyle like people with normal digestive tracts but we can tweak elements of our diet. By just changing small little things you will notice a huge difference in your overall health and even in your disease. I try to still cut down on my intake of unnatural sugars because I know our bodies aren’t meant to have those kinds of sugars. An example, I cut out a lot of sugary drinks and juices and now I mostly only drink fresh tea (hot or iced) and water with lemon or other fruit. If I want to sweeten things I add honey, fruit, or stevia. I feel so much better and refreshed. Also, when I don’t drink those sugary drinks my stomach doesn’t act up as much when I eat.

Putting it positively, having Crohn’s disease is a journey and you have to make the best of it. Eating is a huge way of controlling symptoms, shaping your body, and improving your well-being. Eating healthier and exercising normally has made me feel more alive and energetic even on days I struggle through. But, another important thing for your health that a lot of people are deprived of is sleep and it’s time to get those important seven to eight hours of sleep for me! Getting the right amount of sleep (7 to 10 hours) is vital. It goes hand-in-hand with a good diet and daily exercise. Stay healthy my friends! 😉

 yay

-xo Michelle