An Immune System, what’s that?

My body is no long familiar with what an immune system is, and quite frankly I’m not sure I am either hah! They say laughing is contagious and I’ll tell you, I wish lack of immune system made me more vulnerable to that instead of making the common cold seem like a never ending soap opera! That’s one thing I wouldn’t mind catching! Being treated with anti TNF inhibitors, immunomodulators, biologics, etc.. all of the fancy-shmancy medications we owe our life to come with a price to pay. Side effects are inevitable at some point in time living with a chronic illness. One of the most common is making us more susceptible to infections whether that be viral, bacterial, cancers (yep), and other immune sexinessdeficiencies or diseases. And there’s no way around this side effect because it really just means the medication is doing its job. They all act in different ways but for the most part they all are compromising or “working on” our immune system since Crohn’s disease is basically an abnormal immune reaction to the GI tract which causes inflammation and complications.

My body never “caught” things more often than the normal person before. The doctors kind of just put thoughts in my head to be extra careful. Being exposed to certain infectious diseases can be extremely dangerous to a person with a weakened immune system, and by that I mean life threatening. We, as patients, have a responsibility to be aware of this but it does make it easier when medical professionals and the ones we are closest to are aware to (and this is where vaccines come into place as well, another post on that controversy to come lol). I once kind of freaked out at the carelessness of Baystate hospital for putting me right next to someone with TB when I had a serious flare, a very bad kidney infection, and was on multiple medications that significantly lowered my immune system (yeah that happened). But other than that I’ve never really experienced anything significant.

That is until… I wasn’t responding to the usual dose of Humira which is an injection every other week so my doctor increased my dose to once a week. TADA! Crohn’s buh-bye! I feel great! Until I start experiencing allergies (or you may call them sensitivities) that I have never had before. Muscle soreness and much longer recovery time after the gym. Then… Here comes “cold and flu” season so my body decides it’s just going to catch everything under the sun! It has been about a month and a half and I have had little to no relief. Not only is this wearing on the body but on the mind as well. Doctor visits, urgent care visits, physical therapy, xrays, MRI’s, blood tests, sinus infection, laryngitis, tendinitis, I could go on and on of what the past two months have been.. This sounds pretty miserable right? Yep it is. But it’s the price I’m willing to pay. I no longer really have to worry about a bathroom nearby every time I eat (YEAH IT’S A MIRACLE), and stomach pain is few and far between. (We all have our bad days that catch us by surprise.. like the week of my period might as well just stay in bed for a week straight between cramps and the mini flare I get every single time.. but we’re not focusing on that here.. so, moving on..).

I decided to take things into my own hands and try different methods of controlling my symptoms so I can regain quality of life. I will be writing another strength.jpgpost to expand on this but for right now I’m just trying to raise awareness to the fact even though a person with a chronic illness may be in remission, it still affects their day to day life. It is all about balance and what a patient will endure or physically can endure to get relief from symptoms of their disease. I might consider my Crohn’s Disease to be in remission although my doctor hasn’t clinically declared this, my stomach symptoms are almost obsolete, but my quality of life just isn’t there yet. I’m working right now to change this because I truly believe I can (especially the mindset of it). I’ve been about ten years with no little to smileeeeno remission so sometimes you just man up and take one problem over the other. Just keep in mind, we might not complain to the world about these issues we face (only to the ones we love the most 😉 ) because it really is nothing compared to the pain and frustration of having a flare up of disease. As I say: throw a smile on despite the struggle of getting out of bed, life could be a lot worse, we have a lot to be thankful for, and its just another day in the life of a Crohnie!

 

-xoMichelle

You Are Enough

Hi everyone! Long time, no see.. or talk.. write? Idk haha. But a lot of things along with a lot of people have inspired me lately to revisit my blog. A lot has happened since I’ve last written and I have made many different mind shifts about life. About five months ago I made the decision I wanted to become a better “me”. This has been many years in the coming, and going to be many more years in the making. It started though one morning, I literally woke up, looked in the mirror, and thought to myself… “What are you doing with your life?” No, I don’t mean career wise or education. Everyone has a purpose in this life and I knew that was what I was missing all these years. I was a floundering 20-something year old girl who didn’t know who she was. I’m not going to say now I 100% do, but I am well on my way.

How did I start, you ask? Well, I started with meditation. Pretty simple, but very powerful. I know I’ve mentioned this whole thing  before but I never really stuck with it over a long period of time. By that I mean, I make time pretty much every single day whether its 5 minutes or 45 minutes to sit down and meditate. Thanks to my brother I discovered this amazing thing to escape the world and free my mind I guess you could say. It has brought me leaps and bounds. Not only have I seen improvements in my stomach because it is such a stress reliever but (I know it sounds corny) it has opened my eyes to the beauty of life. I’m slowly getting out of my own way, accomplishing more things in life I want to accomplish. Excuses are no longer becoming even an option in my life. I’m no longer so quick to judge people or things. And every time I get a chance to help someone out, I take that opportunity. But, this is a process and it takes commitment.

It’s been hard; it’s not easy to change habits or a mindset, and frankly people are deathly afraid of it. I was at first, and it’s still scary. But, taking action is the first step. If you have followed me in the past you can see through my blog different changes I have already made. But I’ve dedicated more to bettering myself now more than ever. I watch motivational videos (shoutout to Alexi Panos, I love her, check her out she’s awesome), I think daily about what I’m thankful for, and I even wrote in bright red lipstick across the mirror I get ready in front of every morning “I am enough”. It might sound crazy, but it works. You are enough, you just have to truly believe it.

I’m not trying to “preach” this stuff to anyone, but I just want to put it out there how it has positively  affected me. I wrote this blog to share my story and help others battling Crohn’s Disease. This is an invisible disease (unless you were to turn us inside out lol) and it is VERY wearing on the mind. Between losing jobs, not being able to complete education, to being scared to go certain places you don’t know where the bathroom is, Crohn’s is an everyday constant battle… They say health is something taken for granted until it is diminished. As Crohnies we’ve all been in states of pretty diminished health and poor quality of life. But, beginning to love myself for me I’ve been able to enjoy every day for what it is and not take other things for granted either.

It’s taken me a while not to be affected by the people around me who say I do nothing or that I sleep all the time or it’s annoying how often I “don’t feel good” and I’m proud to say now, it really has no affect on me at all. Frankly, I don’t care what anyone else thinks, they don’t live in my body. It doesn’t matter what job you have, what car you drive, or how many times you’ve succeeded or failed. Everyone is fighting their own battles in life, as long as you’re moving forward, that’s the best you can do. I know everything I do is enough and I’m not living for anyone else but myself. And you shouldn’t either!

The days (take today for example) where I woke up keeled over in pain for the few hours that I was, I no longer feel bad about taking time for myself and laying on the couch being a “lazy bum”. I don’t feel bad for myself on these days, because yeah it could be a lot worse. Instead now I find ways to still try to enjoy this time. Put a funny movie on to have a laugh, cuddle my dogs, or sit outside and listen to the birds if it’s a nice day. And also, I keep the thought in my head: when I do feel good there’s absolutely no stopping me. I’m finally going for the things I want in life and I don’t just keep my eyes on my goals; I make sure I am also enjoying each moment as best as I can. That I believe is the most important lesson in life to be learned because we might not be here tomorrow. This lesson has definitely stemmed from my growth of self-awareness. Butttt  I don’t want to drag this on too long, even though it was long over-due so I’ll leave ya with that. It’s good to be back sharing my thoughts and hopefully inspiring one or two along the way! I will be back soon! And remember kids, its about the journey, not the destination, so enjoy the hell out of the ride! 😉

-xoMichelle

p.s. if any wordpress users know how to change their picture on here, that’d be completely awesome if you could share 🙂 I need a little update on this thing!

 

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

 

WHHYYYYY

Okay, so my title was a little dramatic. But why not. And this isn’t a negative response, it’s actually a liberating one. Why do people think so much, why do people care so much what others think, why not just live your life how YOU want it. I think that is the only way to ultimate happiness. Recognizing this for me has been a big step. People are so afraid of disappointing others, they’re so afraid of what “might happen”. The only person in life you should be truly worry about disappointing in your life is yourself. It is inevitable you will disappoint important people to you, there is no way around it. But they will get over it. Freaking live your life and stop being so afraid. Go back to school at age 50, go for that interview you didn’t think you’d ever have a chance at, talk to that handsome/gorgeous intimidating guy/girl you see everyday at work or in the gym, stand up to that prick boss of yours. If you don’t do it, you will never know. And you know what’s worse than a potential rejection, the constant wonder of “what if”.

Don’t be afraid to fall in love, take a chance, risk everything, go for it. If it doesn’t work out at least you tried and you can move on without wondering. Work towards a goal, set your mind to something. Don’t let life make you it’s bitch, make life YOUR bitch. Do with it what you want and if someone doesn’t like that then they can go back into their little hole of content. We all want to be content with life, when we all should be striving for ultimate happiness. Of course, life isn’t all rainbows and butterflies but it’s what you make of it that matters.

I have recently noticed my whole life I have been looking for something or someone to make me happy. When my key to happiness was right in front of me, sounds corny (well it kind of is, but I like being corny sometimes), and I mean it wasn’t literally in front of me but it was me, myself. You can’t find happiness unless you find it in yourself first. I’ve read a lot of blogs and a lot of articles and a lot of all that stupid stuff on Facebook everyone reposts about how awesome it is finding love a boyfriend and yadda yadda and it all brought me to this conclusion. If I can’t be happy with myself, I won’t be happy with anyone I don’t care who it is no matter how much of that shit I read.

I’ve never had set priorities and goals in my life that I acted on and I often blamed it on my disease. Not that it hasn’t caused me a substantial amount of frustration and made me put my life on hold at some points. Obstacles are inevitable with such an unpredictable disease, in fact life in general you will always have them. I have always laughed about having Crohn’s and stayed positive about it but I have let it control some of my long term goals. I was afraid to go back to school and I was afraid I wouldn’t be able to get through nursing school without getting sick. I was ultimately afraid of success because there was a chance of failure. I wanted it, but I was too focused on the risk and not the potential reward. I have reached a point where I have real goals and I will reach them, even if it takes me longer than most. Yeah it’s nice to hear someone tell you they are proud of you, but an even better feeling is confidently being able to say “Yanno what, I’m really proud of myself”.

I have never been so happy with myself as an individual, ever. Yeah things go wrong but when they do me being happy with myself allows me to get over it and continue on. I’m not saying my life isn’t pretty frustrating right now because it is but I’ve accepted the fact even when it is there’s still no reason not to be happy about something. Right now the most important “goals” in my life are school and sounds mediocre but staying fit. This is one thing I know I can have control over and it is really an awesome feeling, especially doing this while battling a chronic illness. My quality of life right now, in this moment, is all that matters and I know I can optimize that by staying physically fit.

But anyways back to WHYYYY (lol). I just don’t understand it anymore. Life is one big leap of faith. There’s no need to complicate life. If you want to say something, say it! If you want to do something, damnit, do it! Stop hesitating. Don’t do something if you don’t want to. Be a little selfish sometimes. Put your trust in someone, they might surprise you. Hell, you might surprise yourself! But also on a side note, never forget the little things in life. Do something nice for someone else, compliment someone, make someone smile. We feed off of each other’s energy, and don’t you feel good when you’re the reason someone might be a tad bit happier today? Just let go and stop being so concerned with what bad might happen, because you never know it might just end up being the best thing that has ever happened to you.

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Annnnd that’s a wrap on my corny, inspirational, venting sesh. Take it for what you want 😉

-xoMichelle

A New Light on Life

My blog has been pretty consistent with my life with Crohn’s disease along with the complications and obstacles us Crohnies endure. I haven’t posted much lately but I’ve been doing a lot of thinking. Turning in a different direction, I’ve been thinking about how our struggles can relate to others and also how worse life could really be. Even though I have been sick majority if not my whole life, I couldn’t be more thankful for the live I live and the people in it. I was standing in line at the physical therapist with one person in front of me. He was rambling on about how this is a big year for him and his family, his daughters were turning 13, 18, and 21 and graduations and college and so on. But then he started talking about himself and his biggest accomplishment this year was his five year mark of being cancer free. I stood there and beyond my control a smile came on my face. I got the chills, he was so happy and I was silently so happy for him. It kind of hits close to home.

My mom was diagnosed with thyroid cancer almost four years ago. You usually hear of people her age being diagnosed with breast cancer, ovarian cancer, and awful sounding things like that. This wasn’t something you heard of everyday… Or at least we hadn’t, up until then. She broke the news to my brother, my dad, and me first of course. I was standing in my kitchen just me and her because my brother was away at college at the time. I could see on her face something was wrong. Every horrible thought raced through my mind before she even said a word. Her eyes welded up and I didn’t hear anything other than the word “cancer”. I got the biggest pit in my stomach. You never think anything like this is going to happen to you, or even worse the ones you love the most.

The reaction from most people was “Well, if you have to have cancer that’s the best kind of cancer to have”. The disgusting thing about this statement is these people weren’t making a joke, they were serious. I don’t care what kind of cancer you have, NONE of it is good, and unbeknownst to them we soon later met someone who was fighting the same thing and is now losing her battle. It’s scary thing to think about. Thankfully having my experiences of treatment in Boston, my mom decided to go that route as well. This could have been the factor that has now allowed her to be cancer free. She had her thyroid along with a whole ton of lymph nodes out. She barely has a scar. Her surgeon was great. As the next few years go by and she undergoes radioactive treatment we looked to the good of it all. We dealt with it and moved on. Although she is “cancer free”, cancer is never really “gone”. It’s still an everyday worry.

Having experienced this gave me a new light on life. Although her battle with thyroid cancer was pretty quick, it’s still an everyday struggle. She now lives with the complications of living without a thyroid. Gaining weight, hot flashes, calcium problems, and many other side affects. Constantly switching medications and visiting many different doctors she now has to deal medically with herself along with two sick kids (my brother has Crohn’s too). I don’t know how she does it. She is an amazing mom and can juggle a million things at once. She hasn’t had an easy run her life and you’d never know it. Many people now a days, I hate to say it, but are so selfish, she is the most selfless person I know and I couldn’t be more proud to have her as my mom. I hope I can be even a little bit like her when I’m older.

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These past four years has made me realize how much life we have to live.. Or how much we potentially don’t have to live. Overall, I have little worries and try to live each day to the fullest. Being sick, this is tough. But you might not be alive to see tomorrow. Money is money and it’s here to spend. I’m not saying I’m not careful or irresponsible but my point is our bodies are unpredictable and do crazy things and living life is why we’re here. We’re here to do amazing things, love each other, argue, be support systems, and just be crazy! I challenge you, go out this week and do something you’ve never done before. I don’t care if you’re sick, if you have cancer, if you’re completely healthy, or if you have a broken leg. You can do it, and it’ll be worth it. Go embarrass yourself, and have a good time doing it. Be carefree for once. These are the kind of things that have kept me sane. Laughing and being crazy from time to time which my mom has been trying to teach me all my life.. it does wonders because as sick as you are, having a healthy spirit and mind is the most important thing. Laughter is the best medicine.

Listening to that man in the physical therapist office ramble on and talk about his kids and how excited he was, is really amazing. It’s exactly what I’m talking about here. I could tell he just had that zest for life. He was a cancer survivor and there’s nothing more rewarding than that. I might be sick, and there might not be a cure so yeah it’ll be a life long battle. But I’m here to live the crap out of this life, pun intended 😉 And you should too!

 

-xoMichelle

 

p.s. I was nominated for a blogging award my a fellow IBD blogger and my next post tomorrow will tell you more about that and show my appreciation! Thank you thank you thank you!!! ❤