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

 

Pushing Myself to the Brink

So today was my first infusion of Entyvio. This may sound like a foreign medication to most, and well that’s because it is. It has only been FDA approved since May and then came out in June. I knew this day was going to come that I’d start on my last option (for now), but I just wasn’t sure when. Starting a new medication for me is not exactly a new thing. I have been on almost everything in the book as you all may know from my previous posts. This medicine is a lot like Tysabri (which is a bit more popular, used for CD, UC, and MS) except it doesn’t seem to have the side affects that Tysabri hentyvioas, especially the PML virus which is scary as hell, look it up. When my doctor told me that it was relatively low risk and an infusion once every six weeks I was in! I’m always excited to start on a new medication because it kind of gives me a new light on things, “maybe this will work” goes through my head every time. But this was a little bit different.

I am having so much more pain than normal. I’ve been on prednisone for a week now and usually I am eating the whole household and feeling like a million bucks. Not this time, something is different… I was keeling over with pain this past Sunday and had to resort to pain medication, which I hate to admit. I hate the thought of having to take pain medication, I can usually silently manage my pain and most of the time the people around me wouldn’t even know. Not lately, it’s been pretty unmanageable pain. And the worst part about it is I’m having flank pain too as they call it… Aka possible kidney stones. Wonderful.

I can literally feel my insides swelling. I’m not talking bloating I’m talking tissue swelling. It sounds gross but it’s pretty damn uncomfortable. I eat and I swell. It’s been off and on but also been making me a little nervous that something else is going on. Hopefully not but we’ll give it a little while for this prednisone to work some more and then figure it out.

This all makes me nervous because I am finally ready to grind down and go back to school full force this fall. I have my classes set-up and start next Tuesday towards applying to the nursing program this coming spring. This weekend is also my 22nd birthday and I was hoping to get out and have some fun! I probably will, becIMG_8188ause that’s what I do.. I push myself even when I don’t feel good. Sometimes probably a little too hard but oh well. Like I say “it’s my life, let me live it”. It’s actually KILLING me right now to be sitting in bed exhausted and in pain because I bought some new Nike sneakers and gym clothes today on my way home from my appointment and all I want do is try them out! Lately going to the gym has been the only thing mentally keeping me going. It’s my happy place to feel good about myself and blow off some steam. Even if that only means speed walking on the treadmill and lifting 5 lb. weights (when I’m having an off day physically). Actually I might do that later tonight. Hopefully I’ll be feeling a little bit better after a nap.

It’s frustrating having to be cooped up. I mean I don’t have to be but my body just reaches it’s limit sometimes and I have to take a step back. I’m not sure if lack of sleep because of prednisone or the new medication that did it to me today but I can barely function right now and these hot flashes (prednisone side affect) are god awful. Today I wanted to make it a fun day in Boston with my mom after my appointment but prednisonemy body was telling me otherwise. We headed to the Wrentham Outlets after I was done with the infusion and it lasted about an hour. I was so fatigued, nauseated, and swollen we had to leave. Not to mention my extremely crabby attitude and mood swings (also due to prednisone) didn’t exactly make for a fun time.

Now, this is all just a waiting game. Pushing through each day while I wait for my body to hopefully react in a positive way to Entyvio. I have another dose in two weeks, then four weeks, and from then on every six weeks. My doctor told me it could be up to three months to see how much it is potentially going to work. I’ve decided though, unless I am in the hospital I am not going to let it keep me from school this time. I will not withdraw this semester, actually even if I am in the hospital, I will do whatever I can to keep at it. I need to, for my own mental well-being.

Having an invisible disease is wearing on the mind. Very wearing. People assume because you look good and push yourself that you’re fine. I don’t blame them because how would they know unless they’ve experienced it? Sometimes though I just want to have them walk one day in one of our [Crohnie’s] shoes. It would probably change their life, actually not probably, it would change their life.

-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