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