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

Reality 

I’ll admit, the past month or so life’s been hard. We preach all of this stuff about being positive and loving life no matter what.. and we’d love to think we love it 24/7 but that’s not reality I don’t care who you are. Yes we can be positive but there are going to be times life gets in the way. And about that I don’t care what anyone else says, the beauty of it all is that that is okay. We all have our ups and downs. But, I’m so sick of everyone preaching so much positive (sometimes including me). This might sound bad or hippocritical at first but stay with me here. Yeah the positives in life are great, we can stay postive when experiencing the bad but there comes a time (esp in a patient with a chronic illness) that we need to bring ourselves into reality. we wish we all had that mindset all the time.. that’d be awesome but what about real life, reality. “It’s not life if you’re not living it to the fullest” and living to the fullest to me is embracing it ALL. Good and bad. I’m not afraid to admit that I’ve not had the best mindset, I’ve fallen out of my routine, and have had more downs than ups lately. I think the strongest people are those who recognize and value the downs because then the ups are appreciated that much more. I’m not telling anyone to be negative but bring yourself into reality and if you have one bad day, one bad month, or even one bad year.. That is okay, you’re only human.. And you’re definitely not alone ❤️

-xoMichelle

It is World IBD Day!

Happy Thursday everyone! So today is World IBD Day, a day where we try to spread awareness for those who have been diagnosed with Irritable Bowl Disease. I thought since starting back up in writing and in honor of this day I’d retell my story for those who haven’t followed me in the past and share the struggles and successes I’ve had. Most people I’ve come in contact in my life with never even know I’m sick till either they get to know me really well, or I experience bad symptoms while with them (aka potty emergency or severe stomach pain). I’m very comfortable sharing this part of me but it’s never the first thing I necessarily want someone to know. A normal reaction from someone who hasn’t experienced IBD or lived with someone with it is: “well you look good! You don’t look sick!”. We know this, but if you had the same opportunity as my doctor does being able to look at my insides you’d think differently. Have you ever had a canker sore in your mouth? Or a blister on your foot? That’s simply a good way to describe what Crohn’s actually LOOKS like on the inside. It is painful and debilitating, but looking back I never thought I’d say this… it’s not all bad.

I was diagnosed with Crohn’s Disease in middle school. I was 13 years old and a very active person. I danced competitively for years and as sick as I was it never kept me from missing a practice or competition. Before my diagnosis I was very, very sick for a few years. It was like pulling teeth to try to get my pediatrician to send me to a specialist. Teachers, dance instructors were coming to my mom thinking I might be anorexic because I was so skinny and didn’t eat much. Finally when I had a colonoscopy, the truth came out. That was a very scary day. Being a young teenager I had no idea what to think. The one thing that scared me the most is that this is an UNCURABLE disease. I may have times of remission in my life, but it will never go away.

After  my diagnosis we now were faced with the decision of how we are going to treat it. Most people respond to the first, second, or third medication they try or if they get sick very fast end up having surgery. Well, neither of these cases were me. I tried medication after medication and steroids were really the only thing I’ve responded to. Some medications worked for a short period of time and others the side effects were too severe. I’ve lost count at this point but I know I’ve been on at least 20+ different medications over the years and at times taking 10 or 12 pills a day. As a teenager, this wasn’t an easy thing to cope with. I was in and out of the hospital, and consistently spending days on end on the couch. I hid it for a while but at times I felt like an outcast. I missed school all the time and finally my senior year of high school we had to make arrangements to go in every day late because mornings were AWFUL for me. Thankfully my mom, who has been my rock through it all, knew how important keeping a social life was for me and fought with the school so I could still participate in out of school activities regardless of the attendance policy. During that time I was also told by my doctor in Springfield we were out of options for treatment because my case was so hard to treat. We were forced to go out to Boston, which was probably the best thing we ever did. I can thank my doctors out there that all of my intestines are still intact!

But people don’t realize how wearing this is on a person’s mind, the depression it can cause and how unpredictable it really is. Our social life and even a career can be completely taken away at any given moment, the fears we have doing every day activities can be unbearable, it’s not easy. But, that is why I am writing this, it is why I do this. I want to open people’s eyes to how we live, what we need, and also what we can give from our journeys. I also want other IBD patients to know they aren’t alone in this all. It’s okay to reach out and ask for help coping with it all.

Like I said before, IBD isn’t always bad. I could go on and on and on and onnnn about all of the reasons this disease could have potentially ruined my life. I’ve been turned down from dreams I’ve wanted to accomplish, I’ve had accidents in public where I was completely humiliated, I’ve sat countless days in the hospital staring outside as the world continues on. Yeah sometimes we have bad days, we do feel bad for ourselves and that is completely normal. But, I’ve succeeded in surviving with this illness by identifying the good in it all. And I want more IBD survivors to be able to adapt this mindset. I’m a better person because of my diagnosis. I have learned to empathize instead of sympathize with people. I don’t take things for granted because I know they can be taken away in an instant. I also am world ibd dayno longer a judgmental person. I’m sorry but being completely honest after you have excuse my French, shit your pants at an age that it’s not normal lol, you lose the tendency to be judgmental. Over the years so much has changed with the way I live my life and I have Crohn’s to thank for that. Yes, I just said thank you to my disease. I embrace it and the qualities it has given me. I am a strong person because of it, I have to be. Yes we break sometimes but the strength it has given me outweighs all those times I’ve broke. I have many people around me I can thank for all of the support they have given me. You know who you are 🙂

It’s each small act of kindness that can truly change the world. So today, I challenge you to do something nice for someone else. We are all fighting different battles; you could be the reason someone no longer has to hide their struggle. And please in honor of World IBD Day share this post, wear something purple, and help me spread awareness for those who are fighting IBD!

-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!