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

 

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

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

 

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

“Hey, it’s me again!” -CD

Hey! 🙂 First of all, today marks almost exactly 13 months of me having this blog! I couldn’t be happier with the outcome of it so far. I’ve talked to people all over the world through this and have met some truly amazing people. This past year has been nothing but a roller coaster. It’s been calming down lately being on Entyvio, but side effects still prevail… You have to weigh though what you’re willing to go through to feel good, and compared to some of the stuff I’ve been through these side affects are pretty miniscule.

But on another note, Crohn’s never fails so remind you “Hey! I’m still here, don’t forget about me!” even when you’re at your healthiest. I’ve had a few days here and there with severe stomach pain and exhaustion. A lot of people think that just because you’re having a bout of feeling good, it means your cured. Well people, there is NO cure for Crohn’s disease! I know people who don’t experience it have a hard time grasping it but it drives me crazy when someone thinks I’m cured just because I’m feeling good right now. We just go into remission (sometimes clinical, sometimes you just know), and that could last weeks, months, and for the lucky ones even years. But it is so unpredictable it could come and bite you in the ass within seconds, minutes, or hours. Don’t get me wrong, overall I am still feeling pretty great, but I’m starting to think my body is programmed that after I feel good for a few weeks it just sends a little reminder, you’re still sick! Don’t forget! lol It’s really frigggen annoying. The other day I couldn’t eat anything without having severe abdominal pain I literally had to concentrate on breathing just to get through them. They’re almost worse than the really awful flares and hospital stays because they interrupt your workout, delicious dinner, class, or whatever you’re doing just to remind you you’re not completely normal. They interrupt your times of feeling so good you almost forget the disease is even there.

I haven’t been in remission in probably 10 years, and if you were to ask my doctor, looking at my latest colonoscopy, I’m still not “clinically” in remission, but I have very mild active disease. Now seeing it written down that sounds crazy I have been constantly battling this for ten years with few to no breaks from it. I’ve been diagnosed for about thirteen years, but I definitely had it several years before my PCP just had a stick up his ass and wouldn’t give me a referral to a specialist. But, like I’ve said before having this disease has made me into who I am. And like people say some things keep you humble, this disease is definitely one of them. Each little “hello, I’m still here” puts it all in perspective. It allows me to live everyday to the fullest because it literally could be your last.

I can’t believe it’s already been a year I’ve had my blog. Thank you to everyone whose been following along and whose read some of it! And thank you to all f my fellow Crohnie’s who have supported me! 🙂

But, it’s time to watch the Bachelor 😀 I’ll catch ya all later!

-xoMichelle

Buncha thanks!

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

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

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

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

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

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

-xoMichelle