You Are Enough

Hi everyone! Long time, no see.. or talk.. write? Idk haha. But a lot of things along with a lot of people have inspired me lately to revisit my blog. A lot has happened since I’ve last written and I have made many different mind shifts about life. About five months ago I made the decision I wanted to become a better “me”. This has been many years in the coming, and going to be many more years in the making. It started though one morning, I literally woke up, looked in the mirror, and thought to myself… “What are you doing with your life?” No, I don’t mean career wise or education. Everyone has a purpose in this life and I knew that was what I was missing all these years. I was a floundering 20-something year old girl who didn’t know who she was. I’m not going to say now I 100% do, but I am well on my way.

How did I start, you ask? Well, I started with meditation. Pretty simple, but very powerful. I know I’ve mentioned this whole thing  before but I never really stuck with it over a long period of time. By that I mean, I make time pretty much every single day whether its 5 minutes or 45 minutes to sit down and meditate. Thanks to my brother I discovered this amazing thing to escape the world and free my mind I guess you could say. It has brought me leaps and bounds. Not only have I seen improvements in my stomach because it is such a stress reliever but (I know it sounds corny) it has opened my eyes to the beauty of life. I’m slowly getting out of my own way, accomplishing more things in life I want to accomplish. Excuses are no longer becoming even an option in my life. I’m no longer so quick to judge people or things. And every time I get a chance to help someone out, I take that opportunity. But, this is a process and it takes commitment.

It’s been hard; it’s not easy to change habits or a mindset, and frankly people are deathly afraid of it. I was at first, and it’s still scary. But, taking action is the first step. If you have followed me in the past you can see through my blog different changes I have already made. But I’ve dedicated more to bettering myself now more than ever. I watch motivational videos (shoutout to Alexi Panos, I love her, check her out she’s awesome), I think daily about what I’m thankful for, and I even wrote in bright red lipstick across the mirror I get ready in front of every morning “I am enough”. It might sound crazy, but it works. You are enough, you just have to truly believe it.

I’m not trying to “preach” this stuff to anyone, but I just want to put it out there how it has positively  affected me. I wrote this blog to share my story and help others battling Crohn’s Disease. This is an invisible disease (unless you were to turn us inside out lol) and it is VERY wearing on the mind. Between losing jobs, not being able to complete education, to being scared to go certain places you don’t know where the bathroom is, Crohn’s is an everyday constant battle… They say health is something taken for granted until it is diminished. As Crohnies we’ve all been in states of pretty diminished health and poor quality of life. But, beginning to love myself for me I’ve been able to enjoy every day for what it is and not take other things for granted either.

It’s taken me a while not to be affected by the people around me who say I do nothing or that I sleep all the time or it’s annoying how often I “don’t feel good” and I’m proud to say now, it really has no affect on me at all. Frankly, I don’t care what anyone else thinks, they don’t live in my body. It doesn’t matter what job you have, what car you drive, or how many times you’ve succeeded or failed. Everyone is fighting their own battles in life, as long as you’re moving forward, that’s the best you can do. I know everything I do is enough and I’m not living for anyone else but myself. And you shouldn’t either!

The days (take today for example) where I woke up keeled over in pain for the few hours that I was, I no longer feel bad about taking time for myself and laying on the couch being a “lazy bum”. I don’t feel bad for myself on these days, because yeah it could be a lot worse. Instead now I find ways to still try to enjoy this time. Put a funny movie on to have a laugh, cuddle my dogs, or sit outside and listen to the birds if it’s a nice day. And also, I keep the thought in my head: when I do feel good there’s absolutely no stopping me. I’m finally going for the things I want in life and I don’t just keep my eyes on my goals; I make sure I am also enjoying each moment as best as I can. That I believe is the most important lesson in life to be learned because we might not be here tomorrow. This lesson has definitely stemmed from my growth of self-awareness. Butttt  I don’t want to drag this on too long, even though it was long over-due so I’ll leave ya with that. It’s good to be back sharing my thoughts and hopefully inspiring one or two along the way! I will be back soon! And remember kids, its about the journey, not the destination, so enjoy the hell out of the ride! 😉

-xoMichelle

p.s. if any wordpress users know how to change their picture on here, that’d be completely awesome if you could share 🙂 I need a little update on this thing!

 

oooomffff, living the life.

bowels working ecard

Well I was trying to do my English work that was due at midnight but I cannot concentrate and I am having a horrible hot flash.

It all started a few weeks ago, not sure if it’s the season change or stress of school. I don’t think I’m stressed out about school  because I’m doing really good and like it but maybe subconsciously? By “it all started” I mean the exhaustion, countless bathroom trips, and severe stomach pain. I can see it slowly progressing each day. The other night I was up sitting on the toilet for hours and woke up in the morning with such severe stomach pain I had to take a pain pill to get out of bed and force myself to go to my anatomy lab this morning. Thank god I was done at 2:30. I came home and slept for about three hours. It really never ends does it.

Well, got off the phone with my doctor today. He sounded pretty disappointed, just as I was. This was really my last option available right now for treatment and it is clearly not working because I have constant pain. Even when prednisoneecardgoodI feel good, I still have pain. There is a treatment right around the corner but not sure exactly how far that corner is. I don’t know much about it other than it is approved for rheumatoid arthritis and in trials for Crohn’s. We’ll see. Before anything he wants to do a colonoscopy -____- But really before anything we can say good bye to this thin, proportionate face thank you to my 2934838753rd time on prednisone, which started yesterday. Already experiencing hot flashes, moodiness, and insomnia (as you can see it is 2am). And also awaiting my hip and knee replacements at age 30.

It’s constant frustration lately. I haven’t been having much fluctuation in my weight so yes in fact, I look good. Don’t, please, for your own good, ever say the three words “you look good” to a sick Crohnie. WE KNOW! This is in fact an invisible disease meaning unless you are my doctor with a camera up my butt you cannot see this illness. I haven’t been able to eat before 5pm most days without feeling terrible amounts of pain and several potty emergencies in the hour to follow (refer back to my post “Potty Emergencies 101” if you are confused as to what I am talking about…). I can’t even look at food lately. Never ask a Crohnie to finish their meal, or why they are not eating. I don’t care if it is a perfectly cooked filet mignon and a scoop of fluffy garlic mashed potatoes stomach achewith a side of perfectly seasoned mixed vegetables; it is nauseating. Also, don’t force a Crohnie to push themselves harder than they already have. We know what we can and can’t do and we are probably already past our limit of what we should be doing.

I do a lot of nothing lately. Not by choice, but because of this annoyingly life-consuming disease I’ve been blessed with, and the essence behind this whole blog of course. Sometimes I feel like I need to give everyone I meet a detailed medical pamphlet with every little thing drawn out about Crohn’s disease for them to remotely understand. I mean you will never fully understand unless you go through it, as with most situations in life.  But with Crohn’s a stomach ache is not just a stomach ache, “I’m tired” isn’t just “I’m tired”, and in most cases “I don’t feel good” is just a nice way of saying I feel like someone is ripping out my intestines and setting them on fire so try to be at least a little sympathetic or leave me the hell alone.

Crohn’s is indeed a huge pain in the ass, but it isn’t all shitty all the time.. ahah well some of the time. The moral of the story is you don’t know how strong you really are until being strong is the only choice you have. Yeah, it sucks but it could be alllloooot worse. All this talk about different potential cures on Facebook and social media I read all the time is great and all but, I tend to focus on the now, who knows we might not be here tomorrow. So hell, throw a smile on and in between your bouts of excruciating pain and embarrassing potty emergencies find a reason to smile. Laughter is the best medicine. And if you can’t laugh eventually about the weird, awkward situations you will encounter as a Crohnie because they are a lot more frequent than one would think, you’ll go crazy. So I threw in a few pretty funny ecards I found to hopefully get the rest of you Crohnies laughing hopefully at least a little bit!

doing nothing ecard

…said no healthy person ever lol

English can wait till tomorrow. Turning my AC back on because these hot flashes are worse than trying to put makeup on in the dead of summer. Sweet dreams errrrybody.

-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

I’m backkkk, sort of.

Well I’ve been M.I.A. for a while now. I apologize for that. My life has been anything but exciting and I have had a lot of other stuff on my mind, i.e. school, work, what I’m going to do with my future… I will tell you, I have never been happier to see this box and syringe in my life. ImageOkay, now I’m just sounding like a druggie (lol). consuming. But this is probably one of the most confident decisions I’ve made so far. I think I told you all I didn’t go through with the fecal transplant trial, there just wasn’t enough information for me… Hense, the word “trial”. Well before when I was on Stelara which is also sort of an experimental medication for Crohn’s, although is approved by the FDA, I felt amazing. And when I say amazing, I had so much energy, ate like a pig, and was loving life. It was great. So, after my washout period awaiting the trial, I thought back to when I was feeling good and wondered why in God’s name did I ever stop taking that wonderful drug. The answer was: the results of my colonoscopy and my doctor’s better judgement of what my insides appeared to look like compared to my outsides (typical). So yada yadaaaa he made me come off of this. Same old; on to the next one. After my decision to not undergo the trial I basically demanded to be put back on Stelara. Although I put 100% trust in my doctor, I know my body better than anyone else I don’t care how much education you’ve had. I’ve learned so much over the years and with this disease you NEED to know your body. And for all of you newly diagnosed, you will know exactly what I’m talking about a few years from now. Trust me. I’m kind of babbling on, sorry. But anyways, a month into Stelara I’m definitely feeling better but I still get that urge to go to the bathroom and there’s a few other things I’d actually like all you Crohnies opinions on. Here’s a few questions for all y’allllll…

Sometimes I just get wicked hot and feverish. It’s not a hot flash (believe me I’ve experienced those while on prednisone) but it’s more like sweaty and I feel like I have a fever. But, to make it clear I never show a fever. I’ve had people tell me it’s because of being on an immunosuppressant but I’m not sure.. Do any of you experience this?

Also, I work really hard on my body and staying fit. I eat very healthy 95% of the time yet I cannot seem to get rid of my bloat in my stomach. People tell me I’m crazy and I do not look bloated but I can feel it and sometimes I do look 5 months pregnant, scary I know. It mostly comes about when I’m not feeling too well. I’ve taken gas-x and all of those gas relieving OTC meds but I don’t think it’s that. I drink plenty of fluids too. I’ve heard though that Crohn’s patients tend to have a little “pouch” or their abdomen area appear to be swollen. It’s frustrating because I know it’s not “weight” and I just want to know what it is! GAHH. So I guess my question is have any of you heard of this or experienced this? Any suggestions or anything would be helpful!

Despite all that. As my friends and peers have been looking forward to this time in their life, I have been dreading it. College graduation time. The reason why is because my damn stomach has let me barely make it through each semester at a time. Granted these past few years have been the absolute hardest trying to control my disease but I look back and wish I had just pushed myself through it all. That’s kind of a stupid thought because at the time, sitting in the hospital bed every few months it was kind of beyond my control. And it’s not about having the “college experience”. It’s about the future, and what it has to hold for me. At this point… It’s not too much. I especially dread it when people ask what I’m going to school for or any of those “what my future holds” kind of things. I never know what to say and am frankly kind of embarrassed. I’m not complaining, I guess I’m just wishing I could be wearing a cap and gown these few weekends like all of my friends are.

Looking at the other end of it all I am actually really excited because I’m finally going back to school in the fall. Hoping this Stelara works and I have no more surprise hospitalizations coming up. I am very impatient when it comes to this stuff. I want to get it done now and make a life for myself. Not rushing my life away by any means, but I just know what I want for my future. Not only job wise, but just my expectations for life, happiness, and everything in general. I keep trying to tell myself it’s going to happen soon enough, and I know it will. I will figure it out. I truly believe and I know I’ve told you guys a thousand times over everything happens for a reason. I’ve been trying to live like it’s my last day. Cliché and a little corny, I know, but it’s so true. You never know. You could get in a car accident or be handed something life changing, or for all we know the world could end. Ha, at the rate we’re going robots are going to take over with all this damn technology. Don’t you just wish sometimes you could go back to the time when you actually had to, god forbid, call someone and TALK to them on the phone instead of just text or email. It’s gotten kind of ridiculous in my opinion. I get kind of side tracked in these, oops.

Well despite all of the wondering, stressing, and overthinking my life is Imagepretty good. I can’t really complain. I’m feeling better than I was before and things are looking up. And this weather!!!! It needs to be summer now and then I’ll be happy as a clam 🙂

Side note: I can’t believe people actually come on here and read about my fascinating life (sarcasm) haha. I mean I like to think I’m pretty cool but thanks for planting the thought deeper in my mind 😉 bahah

Hope you all have a good night, I’m done babbling on for now. It was nice to get on here and write a little bit again. Sweet dreams!

-xo Michelle

 

 

 

HA! The Embarrassment Of It All

Tonight I realized how much knowledge I actually have for Crohn’s disease and gastro issues. I was very surprised with myself. Lately, I’m assuming it’s from writing this blog, I have had a lot of people approach me for advice and just to talk if they are going through these types of issues. It makes me feel so good when I can help someone and lead them in the right direction. I guess though that is why I started this blog. If that’s all I accomplish with only a few people it’s all worth it. If I had someone to relate to and talk to when I was going through my diagnosis, high school, embarrassing situations, and so on I think I would have handled stuff differently. I’m so open about having Crohn’s Disease, which some people are shocked at. When talking to people about their issues I can tell some people are hesitant when I ask their symptoms to tell me they go to the bathroom a lot and its mostly diarrhea… Not exactly the first thing you tell people. But hey, its life and we all poop! And us Crohnies, we poop a lot! lol Usually I’ll share an embarrassing story Imageand crack a joke to make them realize it’s okay to tell me. And once you say it the weight of the potential embarrassment is off of your shoulders and the person opens up a lot more.

I think the most important thing with this disease is to talk about it. I mean of course not the first thing I say to someone is “Hi, I’m Michelle, I have Crohn’s disease and I poop a lot.. Nice to meet you!” Butttt I do think it is important to talk about the psychological part of this whole life journey rather than just the physical part. A lot of this disease is in your head, not literally but we go through a lot and it takes a toll on us mentally and emotionally. As you might see a pattern, I think laughter is the best medicine. And another pattern you might see if you follow my blog is the jokes I make and how I reiterate the fact they help me get through hard days. And it’s not just a positive attitude. A positive attitude will only get you so far with something like this.

A sense of humor can turn those tears of frustration and home sickness while lying in that hospital bed into a small smile, even if just for a second (and yes, I’ve been there). I thank to god that I have someone who sometimes might have a little too much of a sense of humor about it (if that’s even possible! hah). You can turn a horrible experience with blood work or IVs being stuck a thousand times into a funny experience after the fact. Laugh about it. Don’t dwell on the pain. Yeah, sure, it’s not going to make all of that go away and it’ll still hurt at first but it will help you through even more than just a positive attitude. And as you start adding up these experiences through your journey you will have more to laugh about in the future!

Embarrassment is just a feeling our society has created. Everyone has experienced it in our lives. But, it is all in how you handle it. I’ve learnt over the years each embarrassing moment you experience makes you grow as a person. Each time you get stronger and stronger. As your average 21 year old girl I read Cosmo Magazine a lot. I love reading the embarrassing stories but even more I love reading the little blurbs on how the girl or guy could have brushed off the embarrassing moment. Real people telling them how they would have reacted if they were on the other end watching someone embarrass themselves. Every time I get embarrassed I think of this. We don’t tend to be embarrassed or humiliated but all you can do is brush it off, make a joke about it, LAUGH it off! Again, embarrassment is only brought on by you letting what people think and their opinion affect you. Society can be a toxic thing. You will become a happier person not letting these things embarrass you. Not only being a Crohnie, but with life in general. Image

Next time you get embarrassed, think of reading this post. Reevaluate the situation and laugh it off. Don’t let society dig you a hole to crawl into. Stand on the ground and be confident even when you’re at your most vulnerable. Sure it’s easier said than done but practice makes perfect. And if you do this, before you know it you will have even more confidence come your next encounter of embarrassment. No doubt it will always be there but handling it this way will give you a new light on the subject.

After tackling embarrassment and learning to laugh at different experiences whether painful or absurd you are on your way to being an enlightened Crohnie! When talking to people who seek me for advice or just a similar ear to vent too I always make this an important point. Your health and treatment is important but without a stable, solid, sane mind you’re health with be vulnerable to spiral out of control.

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xo’s&laughs -michelle 😀

p.s. I decided to no longer go through with the fecal transplant trial in Boston. Only 20 people are in the trial and I’m not comfortable with it being the first one of it’s kind. I am a pure guinea pig to get the FDA to approve another trial they will be able to do after this one is over and I’m not ready to be sick for three months just because of that. I started back on Stelara and am weaning down on the steroids. I got my second cortisone shot in my back today and you might have as well shot me in the lower back/butt because I am in so much pain AH! My first one wasn’t nearly as bad! But anyways, I will keep you all updated! Thanks for continuing to read! 🙂 OH! and my mom got a new golden retriever puppy! Check out how cute she is! Her name is Bella 🙂

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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