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

 

Just another day in the life.

I’ve had so many drafts typed up over the past few months but just haven’t brought myself to post, I’ve been trying to get away with anything to do with IBD, which sometimes is just necessary to keep sanity. These last few weeks have been some of the worst. I never expected this to happen a few weeks before school starts. I was really trying to avoid it all but you know you have to call your doctor when you have to get ready for work, meaning blow dry your hair and do your makeup, while sitting on the toilet -__- It’s about that time again, the time where my body decides to go all out sick-mode. What I wanna know is why and when this medication stopped working. I was feeling good before! Like really good! I’ve managed to some-what keep myself busy despite the fact potty emergencies have been REAL. This time around though the pain is almost unbearable and pretty constant. I do a pretty good job at hiding it though, probably why most of the people around me don’t really understand what’s happening unless they’ve had serious GI issues. Even when I’m in a lot of pain I still get out, hang with my friends, and put a smile on. It’s honestly the only thing that keeps me sane. I also still go to the gym, which I’ve gotten a lot of crap for, but I have to do what I have to do to keep my mind in a good place. Even if that means laying on the mat and stretching for a half hour, or lifting 5 lb dumbbells, it’s what I need to do. I could easily lay in bed all day and feel bad for myself but I choose not to. Today’s mindset hasn’t been the best, I feel pretty defeated since I just had to schedule an “emergency” colonoscopy for tomorrow. But it is all about your mind set. I’m lucky (well not lucky) but one of my friends has had digestive problems and I can tell she empathizes with me, it’s nice. A breathe of fresh air when most people get aggravated at me bagging plans or not making any in the first place.

What sucks about this all is I start nursing school full-time in a few weeks and for those of you who have read my previous posts, I am on my last resort medication. I have nothing new left to try. My doctor in Boston has consulted with doctors all over the country about my case. It’s actually a pretty scary thought because we’re all (my doctor, my family, and me) left with the question “what now?”. But I try not to think about it too much. I have trust in my doctor that he will work as hard as he can to figure my stubborn case out. Of course I have started on a heavy dose of steroids (60 mg of prednisone). I have waved goodbye to sleep, and can’t wait to welcome on the new pounds… NOT. I don’t think I’ve ever felt this frustrated before. I finally have my path somewhat figured out for the next couple years (granted anything can happen) but I haven’t even been able to go for what I want to do because this damn disease loves to come and punch me in the gut (literally) right before something important is about the happen. But what’re ya gunna do, you deal with the hand you were given and make the best of it. There’s far worse things that could be happening in life. I’ve always said being a patient like this, going through all this, is the reason I want to become a nurse. Every little obstacle and emotion involved in it will make me a better nurse. It has actually made me a better person.

I’m glad I got to rant a little bit, it’s nice to be back on here since I spend a lot of my time and a lot of effort hiding symptoms, complaints, and what not. I’m not quite sure who enjoys reading my complaining and babbling but that’s alright haha. So since I’m writing now I’ll update everyone who follows my blog with how the next few days go. Hope everyone enjoys the last few weeks of summer! 🙂

-xoMichelle 

Making a Difference One Letter at a Time

Thinking about my options this week for my IV prednisone treatment I decided to voice opinion and be an advocate for every adult patient out there. I decided to write this letter to the president of Brigham and Women’s Hospital in Boston, MA where I seek treatment now. It might seem something so simple and silly as the color of the walls but it could make a huge difference. Yes, I am only one individual, but sometimes that’s all it takes is one individual to make a difference.

 

Dear Dr. Nabel,

 

My name is Michelle Strattner and I’m twenty-one years old. I suffer every day from a tough case of Crohn’s Disease and seek treatment at Brigham and Women’s Hospital. I have had several hospital stays in my lifetime in several different hospitals, the Brigham being one of them, and the most recent one. I’m writing this letter to voice my outlook on my first stay at Brigham and Women’s.

I am from Westfield, MA and sought treatment here in Springfield for the first part of my journey with Crohn’s. Having such a hard time finding something that worked for me I was forced to travel two hours away from my home to Boston Children’s hospital. My first time there I was pleasantly surprised by the comfort and joy in the air despite the fact that I was being transferred by ambulance from Baystate Hospital. I was greeted by a nurse who knew my name. As hard as it was and as much as I cried my eyes out my atmosphere was what made my life a little bit easier for those five days.

I was lucky enough to be treated by Dr. Scott Snapper who works at both BCH and The Brigham. But, I found him wanting to transfer me over to the adult world of medicine. Which in the back of my mind I knew was the right thing to do for my health. This was one of the hardest decisions I have made yet with my care.

One morning awaiting Dr. Snapper’s decision, we got the phone call. It was him telling me to pack a bag I’m being admitted to Brigham and Women’s hospital. This would be my first stay there. I was terrified, as any 20 year old girl would be. As soon as I sat down with the lady in the admitting office the tears started flowing and I learned I would be sharing a room with someone else. I realize this is how any normal hospital operates, but why be normal? I don’t understand this concept. I am so susceptible to infection and catching other ‘bugs’ because of my medications this is a danger to my health. This is a danger to everyone’s health. I was lucky enough to get my own room while I was there and I thank your staff for being so sensitive to my transition from Children’s.

But, transitioning to an adult hospital also means sitting in an off white room, staring at nothing. Just because I am an adult now doesn’t mean I don’t like colorful walls and a “cheery” environment. This isn’t just for kids. I am confident in saying that I was dreading my next stay (which may be this week) at Brigham and Women’s hospital. I am preparing myself to beg my doctor tomorrow to admit me to Children’s instead because I know my visit there will be in better spirits and also there will be a place for my mom to stay with me at BCH. Just because people are independent when they are an adult this doesn’t mean they don’t want a loved one staying with them. My mom was forced to sleep in the hospital bed with me because there was nowhere else for her to stay at The Brigham. Thankfully we are both small people. At Children’s they had a built in window bench that didn’t take up much room but it gave her a comfortable place to stay.

Being sick isn’t fun, why wouldn’t you want to give your patients the best experience while in the hospital? It’s easy as throwing a little bit of color and colorful pictures on your wall and making it an easier environment to cater to loved ones as well as patients. You’re hospital gives some of the best care in the country, wouldn’t you like to be able to say it provides a great experience too? I’m not asking for drastic measures, just for you to think about this. Think about how us patients feel, now getting depressed staring at the stock white walls on top of being ill. After reading this, I want you to take an hour out of your life to go into one of your hospital rooms and sit there for a little while and just look around. How does this atmosphere make you feel? Now imagine sitting there for days, weeks, or months. Where would your loved one stay? These concepts are not just for children. We are living beings and need these kinds of things no matter what age. We need that feeling of life most at these points in our lives. An 80 year old man on his last leg of life might live a little bit longer just because of the happiness colorful walls and a positive environment could bring. This might sound silly, but this concept is real. And from experience I am asking you to seriously consider this request.

 

Thank you for your time.

 

Sincerely,

Michelle Strattner