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

 

 

My Transition: Becoming an Adult

When I was in highschool my case of Crohn’s disease was so difficult I was not able to be treated in the Springfield area anymore (where I live), the medicine was just not advanced enough even though I had a very good doctor. I had consulted with different doctors in the Boston area before but it never became so real until I was transferred from Baystate Hospital to Boston Children’s Hospital my freshman year of college by ambulance. I was sick with kidney stones, a kidney infection, and a flare in my Crohn’s. There in Boston at the hospital I met my new doctor for the second time, Dr. Essers. The relationship with him from that day on was amazing. I was so happy I came to Boston even though I was two hours away from home. They set me up with a social worker to help me decide how to move forward with school because I had to withdraw from my first semester of college. It felt as though everyone was on my side and there to make me feel comfortable despite what I was going through. The rooms were spacious, the walls were bright colors, and every nurse and person working always had a smile on their face. They made sure my mom was comfortable and had a place for her to sleep. We were just taken back by the bedside manner and genuine people that surrounded us. After that day BCH became somewhat of my second home. I fit in and no one even looked at me strangely as I walked through the halls dragging my IV pole behind me. They encouraged me to get up and move around.  I can now say my experiences at BCH were the best experiences I’ve ever had. After two years of care there one of the saddest days so far on my journey with Crohn’s Disease was when my doctor told me he was moving to Washington State. I was speechless. He lead me through my hardest times with my disease and even if he didn’t have an answer to my problems he was willing to try anything. The relief he gave us throughout my care at BCH was unbelievable. I knew in the back of my head he would set me up with another great doctor and that he did.

Thankfully my new doctor worked at Boston Children’s as well as Brigham and Women’s. He is one of the best doctors in the country and was also into research, which was what I needed with my difficult case. I stayed with him at Boston Children’s until I had a big decision to make after failing almost every treatment they offered. He wanted to start me on Stelara. This is a medicine very new to the IBD world and is only offered at Brigham and Women’s hospital. The smart decision was to transfer my care to The Brigham. So we did exactly that. It was very different for us and after that day everything changed.

It was a cold day at the end of January, I can remember it like it was yesterday. My mom got off the phone with my doctor in Boston and told me to pack a bag, he wants to admit me to the hospital. After our two hour drive to Boston and several bathroom pit stops along the way we made it. We didn’t have to wait long but as usual I had to fill out paper work. I sat down with the lady in the admitting office and she went over everything with me. I learned I’d be in a room with another person.. As I heard this the tears started coming. I couldn’t imagine being in a room with someone else as sick as I was then. I was having several bloody stools a day and the embarrassment of stool samples left in the bathroom with another person in the room was horrifying. My mom called my doctor to explain the situation and turns out he wanted to check me for C-Dif (a very contagious infection) so I did need a room by myself. That was a relief but this was the hardest transition I’ve had yet with my disease. The pediatric and adult treatment were worlds apart. From medical methods to bed side manner there was nothing you could compare.

I laid in the dark white hospital room and cried my eyes out, all I wanted to do was go home. Then doctors and nurses would come in to ask me questions or check on me and I noticed they were ignoring my mom by just talking to me. I know this is a crucial part of taking over my own care as an adult but we were always a team. My mom and I did everything together pertaining to my care. Two sets of ears helped us through my struggle and better understand everything. Right then and there I felt alone. They no longer wanted to hear from her and it was all on me now. If you’re around my age (21) you know what I am talking about. As awful as this all may sound I had an amazing and intelligent doctor helping me through the process each step of the way. The team working with me at Brigham and Women’s Hospital was great. It was where I needed to be. At the end of my first stay there my transition was complete and I had finally accepted it. I knew they were some of the smartest people in the country and had the most advanced medicine for IBD.

I still keep in touch with Dr. Essers to this day, as I hope I always will. I was sad to see him go but I’m so thankful he set me up with such a great doctor. I continue to receive the best care I can possibly get. Transitioning into the adult medical world takes an emotional and physical toll on you. It is hard getting past all of the changes into realizing it is just another step in the right direction. But I promise you it will be one of the best transitions you will make for your health. IBD is an ugly disease with no cure. If you have a doctor you don’t like or who isn’t giving you the care and attention you need, you need take control of your care and go see someone else. You might think it is going to hurt their feelings but in the end that doesn’t matter. You’re health should be your main priority and you cannot let a doctors ego get in the way of that. A good doctor will be willing to help you get the care you need even if it means losing you as a patient, and a good doctor will work with others to better your health. Adult medicine is also very different from pediatric medicine. There are a lot more trials and different methods they use. My mom is still always by my side but I now make more decisions and am learning each and every day the importance of being able to do this on my own. I am looking forward to the future of the developing medicine Boston will have to offer me. I am now confident in saying my transition into the adult medical world was one of the best decisions I’ve made so far, and yes I made this decision on my own, as the twenty one year old that I am.