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

 

“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