Liebster Award!

I’m fairly new to the blogging world and still don’t know exactly how it all works but to my surprise I have gotten so much support from complete strangers. Having IBD is a lifelong journey and whether you have Crohn’s or UC we all sort of get each other. I thought I was alone a lot of my life but for once, I know I’m not. I was completely, pleasantly surprised and so thankful for being nominated for a Liebster Award! This award is for bloggers with less than 500 followers. I was nominated by a fellow IBD blogger and Crohnie, gutwrenchingtruthaboutcrohns!

When I read her posts they remind me of myself so much. She shares her stories along with giving a little bit of Crohnie advice, I’d like to call it. I love relating to her posts and she is ALWAYS a support on here which is the thing I am most thankful for. I just want to thank you so much!! I never would have thought this is how my blogging experience would be. I couldn’t be happier! 🙂

According to the Liebster award rules I have to answer the questions she gives me, so here it goes!

1. Who is the most influential person in your life and why?

The most influential person in my life is hands down my mom. She is an amazing person. Having been through a lot growing up and not having an easy run she has a good head on her shoulders. She appreciates life and never fails to see the positive in everything. Even if she doesn’t agree with something I do, she will yes make that known, but I can always count for her support no matter what. She raised me to be confident and secure with who I am no matter what others tell me. My mom is probably the nicest person you’d ever meet. She is selfless and takes in anyone. Also, if you ever need relationship advice, I hate to admit it… but she’s the one to go to!

2. If you are on a deserted island and you can only take 3 things what would they be?

I would take my dog (does that defy the rules? can you bring another living thing? lol), a boat, and a tent!

3. What do you like to do when you are not blogging?

When not blogging you can usually find me working out at the gym, having girls days with my mom, or playing with my dogs! In the summertime I live in my bathing suit and outside! I love to camp and go hiking. I couldn’t be luckier to have the same 7 best friends from high school and when I’m not doing any of the above I’m just your typical 21 year old girl hanging out and going out with her friends.

4. Where is your favorite place you have traveled too?

I haven’t traveled much other than around New England and a few other places. So I’m going to change this question (if that’s allowed!) to the place I know would be my favorite place if I had the opportunity to go. That would be Australia. I’d love love love to go there and I know hands down it’d be my favorite place to travel to!

5. What is your favorite inspirational quote?

“if it’s meant to be, it will find its way”. I actually have this tattooed on my body and I live by it everyday. My mom has always told me this and  I truly believe if something is meant to be it will be. Everything happens for a reason.

6.  Name one thing on your bucket list?

To swim with dolphins!!

7.  What is your favorite thing to cook or bake?

I love to cook! I’m not much of a baker but cooking is definitely a hobby of mine. My favorite thing to cook would probably be my own recipe of lazy chicken parm!

 

Another rule of this award nomination is nominating other bloggers for it as well! I’m not sure how to tell how many followers people have if they don’t have it listed but here are my nominations, who I thinks deserves it! I really have only followed IBD blogs so there is sort of a pattern, this is kind of like the Liebster award for IBD bloggers! haha

1. Fierced and Flared; I’ve been following her blog since day one on here. She is actually one of the reasons why I made one. Her story is inspirational and I look forward to reading every post she puts up. She not only blogs but she is an advocate for Crohn’s awareness and a great writer as well!

2. A Real Pain in the Ass; She isn’t from the U.S. but being a sort of newly diagnosed Crohnie, I find her blog really interesting to read. I can relate a lot to her experiences and beginning her journey with Crohn’s Disease.

3. Emma; Her blog My Beautiful Messy Life, sicker than the average girl is such a good read! I love reading her girly posts along with being a Crohnie. Her knack for fashion, makeup, etc. makes it the perfect blog for young women like me to read! Not only being an awesome writer she captures all the positive that can come from being sick. (And her most recent blog with smoothies.. they are to die for! Already made the Peanut butter power, YUM!)

4. Crohnie Man; His blog isn’t just about his journey and struggles but it is one of the most informational ones I’ve read yet. I look forward to him posting on his blog and the knowledge he has. It’s definitely one of my favorite blogs to read!

5. Stacey Dearest; I nominate her because I read her blog and she always has a positive outlook on her life with UC. She is the same age as me and to read and see another person staying so positive can is awesome. It’s hard this age trying to find yourself along with fighting IBD. I love that she shares some of her diet too because I am always looking for ways to watch mine! But, one of the biggest reasons I have nominated her is her blatant honesty sharing her worst times, and like I try to do, putting a comical twist on it haha. If you haven’t checked out her blog you definitely should, it’s an awesome read!

 

Here are your questions!

1. Since you’re all IBD patients, what has been your most affected aspect of life living with IBD and why?

2. If you could change one physical attribute of our world today what would it be?

3. What is your absolute favorite thing to eat?

4. If you could have any job in the world what would it be?

5. Who is you’re favorite actor/actress and why?

6. Who is the person you most look up to in life?

 

Award Rules:

1. Thank the blogger who nominated you.

2. Answer the questions you were given.

3. Nominate other blogs with less than 500 followers.

4. Post questions for your selected nominees to answer.

5. Tag and link the nominees and post a comment to let them know you have nominated them and appreciate their hard work.

 

A New Light on Life

My blog has been pretty consistent with my life with Crohn’s disease along with the complications and obstacles us Crohnies endure. I haven’t posted much lately but I’ve been doing a lot of thinking. Turning in a different direction, I’ve been thinking about how our struggles can relate to others and also how worse life could really be. Even though I have been sick majority if not my whole life, I couldn’t be more thankful for the live I live and the people in it. I was standing in line at the physical therapist with one person in front of me. He was rambling on about how this is a big year for him and his family, his daughters were turning 13, 18, and 21 and graduations and college and so on. But then he started talking about himself and his biggest accomplishment this year was his five year mark of being cancer free. I stood there and beyond my control a smile came on my face. I got the chills, he was so happy and I was silently so happy for him. It kind of hits close to home.

My mom was diagnosed with thyroid cancer almost four years ago. You usually hear of people her age being diagnosed with breast cancer, ovarian cancer, and awful sounding things like that. This wasn’t something you heard of everyday… Or at least we hadn’t, up until then. She broke the news to my brother, my dad, and me first of course. I was standing in my kitchen just me and her because my brother was away at college at the time. I could see on her face something was wrong. Every horrible thought raced through my mind before she even said a word. Her eyes welded up and I didn’t hear anything other than the word “cancer”. I got the biggest pit in my stomach. You never think anything like this is going to happen to you, or even worse the ones you love the most.

The reaction from most people was “Well, if you have to have cancer that’s the best kind of cancer to have”. The disgusting thing about this statement is these people weren’t making a joke, they were serious. I don’t care what kind of cancer you have, NONE of it is good, and unbeknownst to them we soon later met someone who was fighting the same thing and is now losing her battle. It’s scary thing to think about. Thankfully having my experiences of treatment in Boston, my mom decided to go that route as well. This could have been the factor that has now allowed her to be cancer free. She had her thyroid along with a whole ton of lymph nodes out. She barely has a scar. Her surgeon was great. As the next few years go by and she undergoes radioactive treatment we looked to the good of it all. We dealt with it and moved on. Although she is “cancer free”, cancer is never really “gone”. It’s still an everyday worry.

Having experienced this gave me a new light on life. Although her battle with thyroid cancer was pretty quick, it’s still an everyday struggle. She now lives with the complications of living without a thyroid. Gaining weight, hot flashes, calcium problems, and many other side affects. Constantly switching medications and visiting many different doctors she now has to deal medically with herself along with two sick kids (my brother has Crohn’s too). I don’t know how she does it. She is an amazing mom and can juggle a million things at once. She hasn’t had an easy run her life and you’d never know it. Many people now a days, I hate to say it, but are so selfish, she is the most selfless person I know and I couldn’t be more proud to have her as my mom. I hope I can be even a little bit like her when I’m older.

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These past four years has made me realize how much life we have to live.. Or how much we potentially don’t have to live. Overall, I have little worries and try to live each day to the fullest. Being sick, this is tough. But you might not be alive to see tomorrow. Money is money and it’s here to spend. I’m not saying I’m not careful or irresponsible but my point is our bodies are unpredictable and do crazy things and living life is why we’re here. We’re here to do amazing things, love each other, argue, be support systems, and just be crazy! I challenge you, go out this week and do something you’ve never done before. I don’t care if you’re sick, if you have cancer, if you’re completely healthy, or if you have a broken leg. You can do it, and it’ll be worth it. Go embarrass yourself, and have a good time doing it. Be carefree for once. These are the kind of things that have kept me sane. Laughing and being crazy from time to time which my mom has been trying to teach me all my life.. it does wonders because as sick as you are, having a healthy spirit and mind is the most important thing. Laughter is the best medicine.

Listening to that man in the physical therapist office ramble on and talk about his kids and how excited he was, is really amazing. It’s exactly what I’m talking about here. I could tell he just had that zest for life. He was a cancer survivor and there’s nothing more rewarding than that. I might be sick, and there might not be a cure so yeah it’ll be a life long battle. But I’m here to live the crap out of this life, pun intended 😉 And you should too!

 

-xoMichelle

 

p.s. I was nominated for a blogging award my a fellow IBD blogger and my next post tomorrow will tell you more about that and show my appreciation! Thank you thank you thank you!!! ❤

 

And so it starts…

Well, down to 10mg of prednisone and the Stelara is officially out of my system. I’ve never in my life has this little medicine in my body. I guess which is good to kind of cleanse my system of it all but it’s also bad news bears. Today I was posted up in bed and on my couch sipping on chicken noodle soup and hot chocolate. Granted it’s freezing out so at least I kept warm (hah). But needless to say I’m feeling like crap and my insides are bleeding and a mess. I mean you wouldn’t know because “I look great!” Especially from the weight I’ve put on from this extended dose of prednisone. I registered at the hospital for the fecal transplant trial today and made my appointments. I’m due to get it on April 10th. I’m extremely nervous the colonoscopy is going to make me sick and not allow for the transplant to work. I’m hoping for the best but expecting the worse. This timeline kind of sucks for being sick though. The St. Patrick’s day parade near me is next Saturday and if I’m feeling this bad now I can’t even imagine how I’ll be feeling then and I do have plans to go to it with my girlfriends.

I haven’t had this lack of interest and motivation in a while. Some may call it depressed but I don’t like that word.. It’s a toxic word. I’m just under the weather not only physically but mentally as well. And I know it’s from not feeling good because the past week has been pretty exciting regarding my future and growing my dad’s business as a family business. I’ll expand more on that at some other point, when my mood is a little more chipper. You just get to the point where you don’t really care and just try to get through the day and onto the next. Actually now that I put it that way it sounds kind of pathetic. But that’s the life of a Crohnie from time to time. You have to expect these types of days. They’re unavoidable.

To make this situation worse I’m stuck here in my apartment pretty damn lonesome. Why, you ask? Okay maybe you didn’t ask but I was going to tell you anyways. The pup is at home with my parents. I left her there because my neighbor downstairs complained she barked too much when I wasn’t home. Even though they have to be lying because I take her everywhere with me or leave her at my parents when I’m gone for an extended period of time. So that’s a crock of bs. But anyways, I decided to leave her at home for a few days. And screw them downstairs I’m lonely so she’s coming back tomorrow. I’m just in a bad mood. I was feeling so good for a while. I definitely took advantage of that which was good. But, now I’m back to square one. Yeah, I have something treatment wise to look forward to but it’s not that promising. At least for the long term.

So, that’s all she wrote. Literally. Don’t have much to say tonight just wanted to get out my frustrations of being sick and update all my followers on how I’m doing… which is not good. Boooo. I’m starving and I can’t eat. Throwing myself a pity party then going to bed. Because we are allowed to do that once in a while. Goodnight my fellow Crohnies.

-xo Michelle

Potty Emergencies 101

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“Excuse me sir, if you don’t let me use your bathroom I am going to drop my drawers right here and use your floor.” Don’t tell me that as a Crohnie that thought has never crossed your mind or (if you have the balls) those words have never come out of your mouth in a public place. We struggle with this subject more than people could even imagine. But, thankfully, those important political people are finally taking their heads out of their healthy asses and listening. Which we are very thankful for (lol). If you aren’t familiar with it, a law was passed because of a 14 year old Illinois girl in 2005 who had Crohn’s disease and had gotten turned away from using a public restroom. She had that embarrassing moment we all are much too familiar of, a potty emergency where she didn’t quite make it to the potty. I can seriously sympathize with this, it has happened to me a number of times. This law is known as Ally’s Law. It states that a person with an eligible illness gets immediate access to an establishments restroom even if it isn’t labeled for the public. Although this isn’t passed in all states, they are working on it. It just takes a little research on your state’s website to find out if your state has the law.

In Massachusetts (where I live) Crohn’s and UC patients should have a “bathroom access” or “I can’t wait” identification card. It makes this whole process easier. You can receive one of these pretty easily. I received mine from the CCFA, which I became a member of and they automatically mailed me one. There are a few different foundations that provide them. I do know though, mine Imagefrom the CCFA has my name and identification number so I can prove it’s actually me if someone is rude enough to question it. I have used it multiple times before whether it be to cut people in line (yes, that in fact has had to happened) or just to use an employee bathroom.

Being my strong stubborn self, I did get into a confrontation with a business owner once because of this. And I intend to get him in trouble. Over the years I have became much more knowledgeable about my disease and certain laws and such which has lead me to be very strong-headed about it. I was with my mom on the way to a mall by me when all of a sudden, I got the urge. As a Crohnie when you get that urge, there is NOTHING that is going to make it go away. My mom put her foot down on the pedal and got me as fast as she could to the closest store. It was a convenience store with a big white sign on the front door “NO PUBLIC RESTROOMS”. “Well this is great” I thought to myself, thank god we have this law now. I scurry into the store and asked very politely if I could use the restroom, I have Crohn’s disease and I need to use it now. He said “NO.” A very firm no. My mom followed in after me and she explained to him it is illegal now to turn down a person with a medical condition from using the bathroom. He simply said he didn’t care and no matter what I wasn’t using his bathroom. I was appalled. First of all how someone could be so rude. And panic set in. If anyone wants to talk about “anxiety” which on a side note, I don’t mean to offend people but people need to really reevaluate their “anxiety” and all the meds they take for it, its absurd coming from a person who could easily be on all the anxiety medicine in the world just for the pure fact I have to deal with this disease every day of my life, there are other healthier ways to deal with it. But anyways… my “anxiety” went through the roof and I ran next door to the pizza shop which also had a big white ‘NO PUBLIC RESTROOM” sign, but thankfully I could see the bathrooms so didn’t even ask I just ran! That potty emergency ended up working out, but others haven’t gone that way… If you know what I mean.

All jokes, sarcasm, and hostility aside, this isn’t an easy subject to address. But as Crohn’s disease patients we have no choice but to address it. It can be embarrassing and humiliating but I can promise you, YOU ARE NOT ALONE. We have all experienced it and more times than not if you quickly explain your situation people will be very understanding. The law is slowly and surely becoming in our favor and I highly suggest getting a “I can’t wait” card from the CCFA. Keep these things in mind when you have your next potty emergency and hopefully they can go a little smoother than we’ve experienced in the past! And don’t be afraid to SPEAK UP!! 🙂

-xo Michelle

I’m Famous! Or Atleast My Dr Says So..

Being the topic of my doctor’s, as well as all the other top GI doctors in Boston’s, “complicated patients conference” I’d like to call it I didn’t know how I should feel about that.. (But it does pretty much mean I’m famous 😀 ). I guess in some ways I was relieved for him to actually admit I have a complicated case after failing more meds and treatments than I could count on my fingers and toes. I met a doctor fromImage Ireland working at The Brigham and she was really good. I know my doctor struggles and he tells me sometimes he doesn’t even know what to do or why something is happening but it was nice to feel as if someone else was concerned and genuinely interested. As you all know I’ve been feeling good. Well, that is about to end. In order to be entered into the clinical study I have to have a Harvey Bradshaw score of at least 5. Which in short means, I have to be pretty damn sick. They measure this by your symptoms and the severity of them. My HB score right now is zero meaning I am in clinical remission. My doctor decided to rapidly wean my prednisone dose. This is bittersweet for me. This in fact means, I will get my skinny face back… But, I will also get back my overly skinny body, exhaustion, fatigue, potty emergencies, nausea, and just plain ole feel like crap. I am not looking forward to this to say the least. But, like I say it could always be worse. And if trying a new treatment that may potentially make me feel good means feeling like crap for a little while well, then I’m down. Gotta give a little to get a little.

I’m going to be all over the map on this post because my heads been all over the map lately. Tonight’s got me thinkin’. Thinking back to my relationship post. Trying to have that mindset now. But there’s something different everyday for me. Yesterday it was my back, today I was really feeling my kidney stones.. How the hell is someone going to deal with me haha. Really though, god bless them! Hopefully I’ll find it someday. But, it’s hard enough to even get a date around here with a decent guy. It’s so frustrating! Never mind I have to try to explain myself and why I don’t go to school and just work at a froyo shop and a local vodka company. Sick girl probs at their finest. It’s hard to separate other reasoning why someone doesn’t want to be with you or why something doesn’t work out from just the fact I’m sick. I’ve had people who couldn’t deal with it and now it’s the first thing that I jump to when something doesn’t work out. I don’t know why but that’s what I do. Right now my face is about twice the size it normally is (hence “moonface”) and meeting new guys is terrifying because I think everyone can notice, even though they really probably don’t. I just relate everything back to it which I shouldn’t do but everything else just sounds like an invalid excuse to me. Dumb.

But besides that whole issue, I’m pretty nervous to get sick again.. It’s hard to keep up with work and now that I have my own place I have no choice I need the money. At least I’ll be some what prepared. But on the other side of it, it’s hard when you know you’re going to get sick. The anticipation is there and it’s just digging at me. I feel like all of this is completely pointless because in as little as a few days I could be barely able to function. I definitely am going to take advantage of every day I feel good right now though. I think it’s hard for other people to understand when I say “I’m going to get sick”. One of the blogs I follow put it perfectly when she said we don’t get sick like you get sick, with a cold or with the flu for a week, it’s not like that. We get sick where day to day activities are almost impossible to complete for extended periods of time. We do a damn good job at hiding it too because Crohn’s is also known as an invisible disease. This phrase, “invisible disease” is evil. The kind of evil you never want to run into. You can be the most beautiful person on the outside, and physically suffering on the inside. We are often mistaken as hypochondriacs or “fakers”. Noone truly understands the disease because they can’t see how sick we are by just looking at us. We can throw a pretty outfit andImage a nice smile on and no one would ever know. So much is still out there we don’t know about this disease. There’s still so much more to solve. 

I’ve stocked up my fridge with powerade and homemade soup in order to get ready for when it’s time for my HB score to reach a 5. Yes, I’m excited for the trial but in the same breath I can say I’m not ready to get sick. I’m not ready to give up this energy and this good feeling I’ve been feeling. It’s just another day in the life of a Crohnie. I might be getting more and more “famous” in the IBD medical world due to my complicated case, but I’m still your average tweny-one year old girl just trying to carve her path in life and find someone along the way to hold her hand while she does it.

 

-xo Michelle

 

From the outside looking in. The things I wish you remembered…or knew.

I couldn’t relate more to this post. I think about every one of these thoughts every day of my life. Noone truly understands unless they experience it, or live with someone experiencing it.. and sometimes not even living with that person does how we really feel justice. This is simply, perfectly put.

gut-wrenching truth about crohns

girls looking in

I read many blogs lately in regards to people with chronic illness and things people say ignorantly, to say it bluntly. Yes, even friends say ignorant things sometimes. In many cases, we (with chronic illness) may not share the gritty details with our friends at all. Or we may share some things with a few, or we may share it all with a select few. In my case, I share EVERYTHING with one of my best friends from college who was also my roommate and took me to the ER many times. The other person I share EVERYTHING with is my mom. The rest of people I know, get the not so embarrassing details. Nonetheless, people forget that chronic illness is an ongoing thing and don’t realize what it’s like to be us.

Here are a few things I wish my friends and family remembered about living with a chronic…

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Talk About A Pain In the Ass

Pun completely intended in that title. But, me being a Crohn’s patient you’re probably thinking something different than what I’m really talking about (lol). I mean I guess I should have said a pain right above my butt but you get the jist of it. In previous posts I have talked about a herniated disk in the lowest part of my back. I’ve had a cortisone shot before and it wasn’t the most pleasant experience. Although, it was probably the coolest thing I’ve seen in a while. I mean the whole process of it.

I get called into the office, and of course as always, ma dukes is right by my side 🙂 I walked into what looked like an x-ray room with a big white table in the middle of the room and an x-ray machine with a monitor to the side of it. The nurse was very nice and quite comical when she asked me to lay on the table and then just completely whipped my pants off my butt. Yes, without even asking. Why do I always have such interesting experiences at the doctors, I don’t know. But anyways laying on the table, bare ass out the doctor came in. At first I was kind of confused as to why she whipped my yoga pants down considering I was getting a cortisone shot in my back… lol. But, it was the lowest part of my back and then soon realized they have to do the injection lower than the actual herniated disk. Thankfully, he wasn’t going right into my spine but rather in between the very top part of my butt crack, OUCH! Well, here we go. I’m face down on the table and he brings out the needle. Having being poked and protted so many times I have this weird thing about having to watch the needles go in whether its a shot, blood work, or an IV. I know, I’m weird. But being face down I couldn’t even see the needle which was my first problem. But, I just looked forward and saw my mom’s face and let’s just say that told me it all, which was my second problem. The doctor first gave me an injection of Novocain and boy did that kill. He waited a little while and gave me a second shot of it. Then set up the x-ray machine right next to my back. I felt pressure as I thought he was taking the Novocain needle out… Well, he was walking around the room and I was still feeling pressure. The conversation went like this…

Me: “Uhm, I still feel pressure, why.. is the needle still in me?”

Then, my mom with widened eyes and a shocked nervous smile just looked at me.

Doctor (with his thick Russian accent and as calm as can be): “Yeah, don’t move. It’s still in there.”

Me: “Mom, seriously is it? Can you see it?”

Mom: “Yeahhhh it’s still in there alright!”

Well I look over and there is a picture hanging on the wall in which I can see the reflection of the HUGE needle just sticking out of my back. Something you’d see in a horror film.

Sorry I’ve been blabbering on, the cool part is just about to happen. The doctor screws on the syringe with cortisone in it and starts to push it in. I feel pressure but that’s about it. Then look onto the monitor screen and see the cortisone flowing up through my spine. It was the coolest thing I’ve ever seen. Even cooler than flipping upside down after drinking barium and watching it flow through your digestive track Crohnies (ha!). If you’ve ever had an upper GI you’ll know what I’m talking about.

Well, the cortisone got me to about 40% after doing pretty much no physical activity besides several visits to PT. This wasn’t exactly what I had expected but my doctor did warn me it might not work that well. I then, as you all know, had a Crohn’s flare. And for me what that means is more steroids… A few weeks after my cortisone shot I had consulted with my doctor again to get another one, which would have been my last one I could have within the year. But because of my flare I had an intense course of IV prednisone and to my surprise my doctor told me this should help my back long term even better than another cortisone shot. So, I cancelled my appointment. As my treatment went on with the IV steroids I saw a huge improvement in my back. I was even back to the gym! I know I’ve mentioned this before but I wanted to share the whole story and what perfect time other than when it’s acting up again! (sarcasm) I went to the gym earlier today and apparently worked out too hard because the back pain started up again. It started up so bad I had to take a half of a pain pill. I am thinking about scheduling an appointment for another cortisone shot but that also means time off from work and the gym. We’ll see how I feel the next week or so before I jump at that.

Also, an update on how I’m feeling. I was getting sick of this moon face from the prednisone so I figured I’d be a little bit of a rebel and weaned myself a little further than I was supposed to down on the prednisone. Of course symptoms started coming back and I had to go back up to 20mg. They’ve stopped now that I’ve stuck to the doctors orders though. Lately I have been so exhausted. This feeling is all too familiar to us Crohnies. I haven’t felt it in a while though and maybe was taking too much advantage of it or I don’t know. But I’m going back to sleeping almost 16 hours a day and having a hard time functioning normally through the day. I have to push my way through it and chose my battles wisely. If I want to go to the gym at some point during the day I have to take an extra nap at some point too. Days I work, I haven’t been able to go to the gym. I have an appointment with my GI doctor in Boston tomorrow though so I’ll talk more about it with him but I don’t think there will be a solution unfortunately. Just going to stick to my green tea and extra sleep for now. Speaking of sleep, I have to get up at a decent time tomorrow so I’m going to call it a night while this pain pill is still working and not being a pain in the ass!

Sweet dreams my fellow followers and Crohnies!

xo Michelle.