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

 

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