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

 

 

Never Stop Living

Well well wellllll. Here we are again. The dreaded sleepless nights due to this awful drug prednisone. Although you feel like a million bucks on it (besides gaining 10 lbs. in a week) these side affects are brutal. My stomach hasn’t quite responded as fast as it usually does with the prednisone but side effects are still raging. I swear I am going to need hip replacements at age 30 and that is no joke. I’m on this stuff three times a year at least. At least this time it isn’t via IV or a hospital visit, although I shouldn’t say that too fast hah.

With everything in this world that is happening it actually makes me look at it in a positive way. My brother put it perfectly, this world is a ticking time bomb. You never know when your time is up. You could get in a car accident, or drop dead tomorrow by an unknown cause. I feel good on prednisone and living in the moment is all I can do. Right now I chose quality over quantity. My options are limited and I start my last available medication (unless something better comes out) either at the end of this week or next week. It was actually quite scary hearing my nurse on the phone tell me it’s my last option for now. I’ll take all the time I can get feeling good because for all I know it might not work, or like I said I could drop dead tomorrow. This might be looking at it in a negative way but I’m really not. smileeeOf course I want and am praying for this treatment to work! But for God’s sake live in the moment! I might have more health issues to deal with when I’m older, I’ve already accepted that, but you can’t live life to the fullest being so concerned with the future. Because after all, you might not be here. It might sound a little harsh but it’s thinking this way that has put that spark of life back in me that’s been dwindling down to nothing but a dull ember. Yes, Crohn’s disease is horrible and I wouldn’t wish it upon the person I hated the most but life could always be worse and why not live it how you want RIGHT NOW. Some people will never have that option. You are lucky to be in the ‘now’ and there’s nothing better than the present, living in it. Put a smile on and count your blessings!

 

WARNING: rant in progress…

I’m sure you’ve all heard about the ALS ice bucket challenge to raise awareness of ALS. It’s been blowing up the media and it really frankly pisses me off the people who are shitting on it and saying people are doing it for attention and all that. I think anyone with any kind of illness, chronic or not, would agree with me. I don’t care what it going viral for the internet or if no money is being raised (by the way donations have gone out of control of ALS woo!) but if something like this was done for Crohn’s I would be absolutely ecstatic, I would probably cry of happiness. Awareness when you have a disease is the one thing you want. You want someone to at least try to understand what you are going through. No one fully understands until they are the one going through it but I have had people say “oh yeah you have a bad case of diarrhea all the time” and its frustrating because this affects every aspect of my life even though “I look good”. This actually is one of the reasons I initially started this blog. To help people better understand what we IBD patients go through. That was just a rant though about the latest rage on social media. So shut your mouth and mind your own business. If you don’t want to support a cause keep it to yourself because the negativity is definitely not needed, grumpy pants people.

Anyways, a friend with stomach issues brought this hilarious article to my attention and I really felt the need to share it with my fellow Crohnies. http://www.healthline.com/health/crohns-disease/would-get. I think every point in this post applies to me, even the jury duty one haha. Nothing worse than interrupting a court room because you urgently have to poo and then trying to explain yourself!

Like I keep saying over and over. Laugh it off, we poop a lot. Although it’s much, much more than that, shit happens (ha) and some people might not understand but you don’t need those people in your life. Find your number 12 if you haven’t already (in the link above), live in the moment, be happy, and don’t let anyone tell you otherwise. SMILE! 🙂

meee

-xoMichelle

Fall, Popcorn, and Stress.

Summer is changing into Fall soon. I love Fall, mainly because of the cute clothes, but I also hate Fall… Mainly because seasons changing means Crohn’s flare up in the Strattner household. This is the weirdest thing you’ve probably ever heard of, I know, but I experience a flare-up basically every time the season changes. Sometimes worse than others but yes that means four times a year, bleh. My brother seems to be the same way and when my Grandpa was alive he also experienced this. Needless to say, I’m feelin’ it and it doesn’t feel good. I suppose though my doctor was right when he told me Stelara wasn’t working for me. But hey, I look good right! haha That’s actually the worst compliment a sick Crohnie can get I think.

I haven’t noticed weight loss but the past couple days I’ve been either on the toilet or sleeping. I’ve been pushing myself going out but it’s just getting worse. Finally I guess I should let my doctor know. My next treatment option is my last one for the time being unless something else better comes out soon. I have been on Tysabri before and I responded well but my side affects were unbearable. This drug I would be trying is along the same lines but has a lot less risk than Tysabri. I forget exactly what it’s called but it too is an infusion once a month I would go to Boston to receive. Hopefully I can start this sooner than later considering I’m finally ready to grind down and start classes this Fall towards nursing school.

So, yes, I’m guilty… Guilty of eating a few handfuls of popcorn the other night.. And yes I am paying for it. The pain I experienced the other day was agonizing. Stupid move on my part of course but who doesn’t love popcorn, it is literally like my favorite snack well until I start keeling over that is. I remember the week I found out I couldn’t eat popcorn. I was at the Eastern States Exposition (The Big E) a long time ago with my mom and we bought a HUGE bag of kettle corn, and I mean it was huuuuge. Well I finished that bag in about three days and I think I saw the light. I thought I was dying for two weeks after that. Not only spending hours on end sitting on the bowl but assuming the fetal position every other hour in stupid amounts of pain. It was great (sarcasm at it’s finest). My favorite snack right down the drain, no pun intended. From then on I stayed far, far away from popcorn, corn on the cob, and anything of that sort. I kind of felt for those with food allergies in a way, like peanuts, because peanut butter is great. Popcorn is too, ugh.

One thing I don’t give enough credit to that causes a flare-up for me is stress. I think stress is actually my number one trigger. Thankfully I have a good support system between my family and friends. This time of year you’d usually think starting school in a couple weeks would be causing me the most stress but it’s actually not that. I’m really excited to go back to school and get my butt in gear. My biggest stressor is, well, life right now. I know that sounds general but one specific thing lately hasn’t been working out and you know when you want something to work out more than anything but it just doesn’t no matter how hard you try. Yeah, it sucks. It’s been causing me so much stress even though I try not to let it. It’s definitely been taking a toll. It’s weird to think that something in your mind can affect you so much physically. It’s really eating at me, literally eating at my insides lol. Laying around and all that from not feeling good isn’t exactly helping me either. All I can say about that is: Men, ya can’t live with ’em, ya can’t live without ’em. haha Just gotta sit back and let life happen sometimes. Other than that little glich, life is pretty good right now. Feeling like poo isn’t that great but as I say it could always be worse. Count your blessings friends.

A quote I’ve recently found that really caught my attention and I absolutely loved:

“When life gives you a hundred reason’s to cry,

show life you have a thousand reasons to smile”

Sweet dreams! -Michelle xo