Oh happy day :)

Today has been a day for the books. I honestly never thought I’d ever see this day happening. I’m so excited to announce to my blogger friends, fellow Crohnies, and anyone who follows my blog that I am officially in clinical remission!!! WHUUUUT! (Side effects from my last blog are starting to get sorted out and somewhat under control btw!) This is amazing. 16 years have gone by with little to no relief. I’ve worked so hard to keep a healthy mind dealing with all of the frustrations that comes along with being chronically ill and honestly sometimes I wasn’t too good at it. But, days like this make it worth those struggles.

I had my routine doctor appointment and was seriously astounded by my colonoscopy notes. I’ve never seen my doctor so happy. I can owe my life to these doctors out in Boston. Especially the one who pushed for me to go there in the first place, Dr. Essers. And the one who continued and still continues to follow my case and do literally everything he can to get me healthy, Dr. Snapper. These guys are the definition of what a doctor should be. Not only have they shared my frustrations with treatment failures but they’ve been by my hospital beds in the midst of my mental breakdowns. Dr. Snapper was by my side through my very difficult transition into adult medicine, which was one of my hardest times mentally dealing with the disease. They spend time with me, discuss my case with other doctors around the country, and give me the absolute best treatment they can offer. Dr. Snapper’s PA, Beth-Anne, is also just as amazing. She answers my emails off hours, she’s always there for me.

These people are truly incredible. They don’t just treat me, they fight for me. After countless of semesters having to withdraw because of hospitalizations I came to one of my biggest defeats yet: getting kicked out of nursing school because of my illness and knocked out immune system. But I wasn’t alone, Beth-Anne was there to fight for me. She called the school, she wrote a letter. What medical professionals take the time to do these kinds of things? I’m SO lucky to have them on my side. Any time I see them I’m not greeted with a handshake and hello but a hug, huge smile, and “it’s so nice to see you Michelle!”. I can’t ever get out of the office without getting a hug from the infusion nurse, Jane, and update her on any new boyfriends I have haha! (it’s always one of her first questions). These people are not only just my medical team but they’re family to me.

Nothing puts life quite into perspective like being chronically ill. Yes, I know there is no cure to Crohn’s Disease, and it could flare on me at any time. But these are the times that I don’t take for granted, how could you? I feel good! Writing this is almost bringing me to tears. I truly have such a good support system and I couldn’t do it without any of you. Friends from home, friends I’ve made from this blog, my family. I couldn’t do it without my PCP doctor Lao (who takes care of most of my side effects and is totally sick of me by now hah!), my local Walmart pharmacy who knows me by name haha. And last but not least my mom whose spent more hours than I can even count on the phone fighting with insurance companies to approve my $16,000 monthly cost of medications and has never let me go to a doctor appointment alone two hours away in Boston. She has slept next to me in hospital beds and hasn’t left my side. Also, never fails to laugh with me and make light of being chronically sick… AKA she is the person who keeps me sane through it all.

A lot is wrong with the world we live in… But don’t lose hope in humanity. There’s still good people out there. When it comes down to it life isn’t about politics, money, things, or even beliefs. To me, life is about the experiences I go through, the love I’m surrounded with, the bad days that make me appreciate the good ones, and that’s it. None of us are guaranteed tomorrow. For these reasons never forget to show gratitude and thank those people in your life. Because I know, without them I’m not quite sure if I’d even be alive to see this day. The day I’ve been waiting for for over 16 years, and I couldn’t be happier to share it with all of you!

-xoMichelle

 

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

Celebrate Your Wins!

opportunity

I told my self August was going to be my month. I told myself I am giving myself till the last day, my birthday, to take some huge steps forward. I kind of put in my head nothing was going to stop me and my fear of it all was just going to fuel me, for real this time. As you all know I’ve tried to go down many paths and majority of those roads I’ve taken have become dead ends due to having Crohn’s Disease and the unpredictable and unavoidable complications it can produce.

Well, although there were a few disappointments this month (you know, life happens) the few good things that have happened completely over shadowed them. The month started out with my car breaking piece by piece. I’ve never been approved for loans or anything on my own, my parents always had to cosign or sign for me. I have never owned anything myself.. Mostly due to not being able to hold down a good job to make enough income. But, I’ve been working hard for the vodka company and getting enough hours to help me out. I’ve also been working hard to build up my credit and it definitely paid off. I was able to sign a lease for a brand new 2016 Toyota Corolla Sport August 2nd! As soon as the sales woman, who was awesome btw, told me I was approved I wanted to jump out of the chair 😀

That week I decided to finally give a potential mentor in the real estate world a call. Needless to say, I can’t wait to work with her. She isn’t only awesome at what she does, she’s a suuuper nice person. The next step I took was signing with a Real Estate company in my town, Real Living. I had my first little session tonight after signing all the papers with the manager and I can’t wait to get going! This is a job that does take a lot of persistence, time, and discipline but I honestly think it’s the perfect job for me. Having the freedom being a real estate agent gives me, I don’t have the fear of being fired or missing work because I’m sick. I can work from home if need be. I couldn’t be more excited for my future! Oh, I also got approved for my second piece of investment property! Time to flip a house!! Woohoo!

I’m not telling you all of this to brag, at all, I’m very far from where I want to be but simply because sometimes you just have to celebrate your wins in life. Actually, you should do it all the time. As many failures as I have I’ve never really looked at them as failures, it was kind of a normal thing for me (in the least depressing way possible lol), I’d just say to myself “on to the next” and picked up and moved on. Now that I’m really working towards something I really love, I’m humbled but excited.

Never be afraid to share your successes with family, friends, and even the rest of the world! Not only will it keep you on your path to success but it may even fuel someone else to pursue something they love as well. And always try to find the opportunities and possibilities in your failures, because I promise you they are there! It is though, time to get back to work 🙂 Happy Tuesday friends!

-xoMichelle

 

Prep time! :D

Today’s the day… the day of the dreaded prep. I’m going in for my yearly colonoscopy tomorrow to check and see if my medication is working. It’s always this time of year it seems to come: summertime and the weathers nice. But hey it’s just another day in the life. I’ve been feeling okay lately. Just okay. I’ve been a little more tired than usual, which isn’t necessarily a bad thing because with the steroids I was staying up night after night, the insomnia was REAL. Also, my appetite hasn’t been there but I’m not entirely upset about that either since I packed on the pounds during my last 9 month stretch on and off of the roids (Prednisone and Uceris). A lower appetite also means this prep won’t be as miserable as usual. I have pain here and there, very localized though, I can almost put a pin on it. It’s my usual pain, like a knife in the stomach kind. You have to catch your breathe a little bit from it. But, it’s definitely less frequent than normal *thumbs up!* 😀

So after my recent off of Uceris, as you know, I’ve had good days and bad. I seem to be having a lot of IBS symptoms unrelated to Crohn’s. I’ve had to use several courses of antibiotics to treat these over the last 6 months or so. When my taper from steroids starts I almost prepare myself for the days on days of fatigue, countless and very urgent bathroom trips a day, and unbearable stomach pain. But knock on wood, this time like I said I am doing okay! I’ve been completely off Uceris for about a week and a half now, which doesn’t seem very long but it is. It’s nice to see my body coming back and my face going back to its normal size ha! No more moon face woohoo! Just crossing my fingers my insides show some good news as well.

I’m anxious for tomorrow to be over with, I usually go under full anesthesia for the colonoscopy and this time I’m not. My doctor only performs them under partial sedation and the last time I had partial… it was a nightmare. Probably one of the most painful things I’ve endured besides kidney stones. I was sick on the couch for a week afterwards. I’m hoping I’m more healed on the inside so the recovery will be easier. After this procedure we’ll see if this run on Humira (my third time in about five years) is working. I went from an injection every two weeks to once a week a few months ago and it seems to be helping more. This is frustrating though because no matter how I feel if I still have inflammation or signs of active disease then I have to visit other options. I think this just stems from the everyday struggles of living with a chronic illness. We don’t know what completely “normal” or “healthy” ever really feels like, and the reality of it is most of us won’t ever know. But, my doctor tells me I have two more options we can talk about. Thankfully the world of medicine is ever expanding and if those don’t work I will most likely qualify for some sort of trial, or some other treatment will hit the market. That’s the thought, or hope.

Tomorrow I will be participating in research by donating samples of blood, hair, nails, and tissue to help Crohn’s research. Even if it won’t directly benefit me, it might save someone else’s life in the future. So please keep helping me raise awareness and money! Some of us desperately need it! And to those doctors and medical workers who are constantly pushing for new treatments, my family and friends who are a constant support, and all of the people who share social media posts and donate money, I owe you all my whole life. I wouldn’t be here without all of you.

 

-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

 

A Fork in The Road

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.

-xoMichelle