Carving Your Path

Over the years of having this blog I haven’t been very consistent with posting but I have been consistent with writing. The challenge for me is deciding what to post and what to keep to myself. But then my mind goes back to when I first started this and why I continued. I started writing for myself as an outlet, but I continued because of the amount of feedback I was given and the amount of people I have helped. I’ve been extremely open while writing this blog. I talk about the real things and the ugly things no one wants to. But I now realize this is why it has helped people.

Something happens when you become physically the healthiest you have in your entire life. It’s not something easily explained. It’s almost like the disease was never there, it never existed… Until it appears again. When I say this I don’t mean the disease itself but the impacts it makes on your life. These can be some of the most frustrating moments in your life. There is no cure for Crohn’s Disease. Symptoms may disappear at times, but it always remains with you. Some how, some way. You face challenges you otherwise wouldn’t. You just have to decide whether this builds you up or breaks you down.

As some of you may know, I have had a lot of obstacles to overcome with my school and career path. I’ve always felt I was meant to work in the medical field. I’ve been holding on to this for years. For those of you who aren’t familiar with what had happened in the past… I was accepted into nursing school and was kicked out because I had negative titers for some immunizations (I never converted when I received my vaccines as a child so I am now not immune to these diseases). We fought and fought with the school but lost the battle. Now that I am healthy and on less medications I wanted to revisit this possibility. I wasn’t ready to completely shut this door. I’m following the proper protocol, with an infectious disease doctor. But my last visit with him wasn’t too promising. Administering some vaccines could be deemed as malpractice. I have my follow up appointment tomorrow. My doctor redid my titers to see if anything has miraculously changed. We’re praying for a miracle but I also need to prepare myself for this door in my life to close.

These are the types of things I am talking about. Now, everyone goes through bad times, and is faced with challenges, but it can be difficult coming to terms with this while living with a chronic illness. This is especially true for the newly diagnosed or patients who have been in remission before. You are never prepared for this. Even, after more than ten years of being diagnosed I am still not prepared. This disease has never ruled my life, it is one-hundred percent a part of me, but it isn’t who I am. I haven’t let it dictate me succeeding or failing. Although it has made me carve new paths along the way, I have to look at this as new opportunity. I don’t give myself any other choice.

This though, is one of the hardest challenges I’ve been faced with. I never thought I’d have to overcome things (because of Crohn’s Disease) while in remission. The frustration is being healthy finally and still not being able to do the things you want to do. Like I said I have been holding onto this career path for years. Closing these doors can be hard but the only way to move on is by finding another one to open. I feel defeated at moments, which you will, but you have to rise up and out of it somehow. Having awareness that you are going face these types of obstacles because of your illness will make a huge impact on how you react and your ability to find the good in it.

Life comes at us hard sometimes, and there are an unlimited amount of ways we can react.  Ultimately though, the choice is ours to carve our own path no matter the circumstance.

-xoMichelle

 

Prep time! :D

Today’s the day… the day of the dreaded prep. I’m going in for my yearly colonoscopy tomorrow to check and see if my medication is working. It’s always this time of year it seems to come: summertime and the weathers nice. But hey it’s just another day in the life. I’ve been feeling okay lately. Just okay. I’ve been a little more tired than usual, which isn’t necessarily a bad thing because with the steroids I was staying up night after night, the insomnia was REAL. Also, my appetite hasn’t been there but I’m not entirely upset about that either since I packed on the pounds during my last 9 month stretch on and off of the roids (Prednisone and Uceris). A lower appetite also means this prep won’t be as miserable as usual. I have pain here and there, very localized though, I can almost put a pin on it. It’s my usual pain, like a knife in the stomach kind. You have to catch your breathe a little bit from it. But, it’s definitely less frequent than normal *thumbs up!* 😀

So after my recent off of Uceris, as you know, I’ve had good days and bad. I seem to be having a lot of IBS symptoms unrelated to Crohn’s. I’ve had to use several courses of antibiotics to treat these over the last 6 months or so. When my taper from steroids starts I almost prepare myself for the days on days of fatigue, countless and very urgent bathroom trips a day, and unbearable stomach pain. But knock on wood, this time like I said I am doing okay! I’ve been completely off Uceris for about a week and a half now, which doesn’t seem very long but it is. It’s nice to see my body coming back and my face going back to its normal size ha! No more moon face woohoo! Just crossing my fingers my insides show some good news as well.

I’m anxious for tomorrow to be over with, I usually go under full anesthesia for the colonoscopy and this time I’m not. My doctor only performs them under partial sedation and the last time I had partial… it was a nightmare. Probably one of the most painful things I’ve endured besides kidney stones. I was sick on the couch for a week afterwards. I’m hoping I’m more healed on the inside so the recovery will be easier. After this procedure we’ll see if this run on Humira (my third time in about five years) is working. I went from an injection every two weeks to once a week a few months ago and it seems to be helping more. This is frustrating though because no matter how I feel if I still have inflammation or signs of active disease then I have to visit other options. I think this just stems from the everyday struggles of living with a chronic illness. We don’t know what completely “normal” or “healthy” ever really feels like, and the reality of it is most of us won’t ever know. But, my doctor tells me I have two more options we can talk about. Thankfully the world of medicine is ever expanding and if those don’t work I will most likely qualify for some sort of trial, or some other treatment will hit the market. That’s the thought, or hope.

Tomorrow I will be participating in research by donating samples of blood, hair, nails, and tissue to help Crohn’s research. Even if it won’t directly benefit me, it might save someone else’s life in the future. So please keep helping me raise awareness and money! Some of us desperately need it! And to those doctors and medical workers who are constantly pushing for new treatments, my family and friends who are a constant support, and all of the people who share social media posts and donate money, I owe you all my whole life. I wouldn’t be here without all of you.

 

-xoMichelle

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!

 

A Fork in The Road

It was Thursday morning a week into nursing school, the sun was shining, and I got up bright and early to go study before class started. As I go through my notes my phone lights up with an email. It is from the director of nursing at STCC. The email is telling me she wants me to meet with her and the Dean of the Health Department to discuss my “situation” right now. Right off the bat this didn’t give me a very good feeling. I had contacted her earlier about any further steps I needed to take regarding my vaccinations. I am on medications for my Crohn’s that prevent me to receive live vaccines (which I’m sure many of you Crohnies are familiar with). Unfortunately when I got my titers done I had not converted over with almost all of my immunizations. I think the only thing I was immune to was Measles.

When I found out this information over the summer I contacted to school immediately and provided documentation for everything. They told me all I needed was a doctor’s note stating I cannot receive these immunizations. After I did this I didn’t hear from them so I assumed everything was fine. Well, needless to say they are now trying to kick me out of the program due to medications I’m on and not being able to receive my immunizations. They told me I am not health cleared because I have not received these shots. I do understand this is important and that they have to hold up to the contracts… Buttttt, what baffles me is anyone can refuse any vaccinations for religious reasons (they have forms for that to fill out) and still participate in the program and clinical. Discrimination? I think so.

When I was sat down with the Dean and director I was told I need to withdraw immediately to prevent losing money (by the way, this was the last day of the semester to withdraw without penalty, coincidence?). They did tell me I would have automatic readmission to the program but if I were to go back on all of these immune suppressing medications (I am on methotrexate, prednisone, and Uceris) I would then have to withdraw again. She proceeded to tell me, “I should really consider a new profession”. Rude. If this wasn’t a knife to my stomach I don’t know what would be. And also, am I the only sick person who wants to become a nurse? Like come on, let’s be realistic here this can’t be the first time this has happened.

I have worked so hard to get into this program, I lost it when they told me this. They let me sit there and cry in front of them while they just stared at me with blank faces. After leaving I thought about it more and was absolutely not withdrawing. This was not right and something about the whole situation had to be illegal. I called my mom and doctor and they were on it like flies on shit. They clearly did not know who they were messing with. To me it sounds like they just don’t want to be bothered filling out extra paper work and/or make special arrangements for me (find a place I can clinical at). Oh, and I didn’t even let them tell me I can’t attend lecture and labs. I was not going to fall behind while this gets figured out.

The past five years of my life I have struggled to stay in school due to health issues. I have had to withdraw twice due to hospitalizations and I’ve taken multiple semesters off because of it. When I finally am feeling good and am ready to go to school full time they just have to knock me down. I’m not an easy one to knock down though. My family and doctor have both worked really hard to keep my psyche in check because this disease is so wearing on the mind. When you’re not able to go to school or work you feel useless and like you’re not going anywhere in life. I’ve had this feeling many times during my life but it vanished when I got accepted into nursing school. I could finally see my future and what I was meant to do. This isn’t just school to me, this is the rest of my life. It is what I want to do for the rest of my life. Even if in the end I am not able to attend nursing school, they’re not going to get out of this one without a very big fight.

Life isn’t always fair, but in my head I keep saying over and over again: everything happens for a reason. And I truly believe that. Don’t just be a fighter against your disease, be a fighter in life.

-xoMichelle

WHHYYYYY

Okay, so my title was a little dramatic. But why not. And this isn’t a negative response, it’s actually a liberating one. Why do people think so much, why do people care so much what others think, why not just live your life how YOU want it. I think that is the only way to ultimate happiness. Recognizing this for me has been a big step. People are so afraid of disappointing others, they’re so afraid of what “might happen”. The only person in life you should be truly worry about disappointing in your life is yourself. It is inevitable you will disappoint important people to you, there is no way around it. But they will get over it. Freaking live your life and stop being so afraid. Go back to school at age 50, go for that interview you didn’t think you’d ever have a chance at, talk to that handsome/gorgeous intimidating guy/girl you see everyday at work or in the gym, stand up to that prick boss of yours. If you don’t do it, you will never know. And you know what’s worse than a potential rejection, the constant wonder of “what if”.

Don’t be afraid to fall in love, take a chance, risk everything, go for it. If it doesn’t work out at least you tried and you can move on without wondering. Work towards a goal, set your mind to something. Don’t let life make you it’s bitch, make life YOUR bitch. Do with it what you want and if someone doesn’t like that then they can go back into their little hole of content. We all want to be content with life, when we all should be striving for ultimate happiness. Of course, life isn’t all rainbows and butterflies but it’s what you make of it that matters.

I have recently noticed my whole life I have been looking for something or someone to make me happy. When my key to happiness was right in front of me, sounds corny (well it kind of is, but I like being corny sometimes), and I mean it wasn’t literally in front of me but it was me, myself. You can’t find happiness unless you find it in yourself first. I’ve read a lot of blogs and a lot of articles and a lot of all that stupid stuff on Facebook everyone reposts about how awesome it is finding love a boyfriend and yadda yadda and it all brought me to this conclusion. If I can’t be happy with myself, I won’t be happy with anyone I don’t care who it is no matter how much of that shit I read.

I’ve never had set priorities and goals in my life that I acted on and I often blamed it on my disease. Not that it hasn’t caused me a substantial amount of frustration and made me put my life on hold at some points. Obstacles are inevitable with such an unpredictable disease, in fact life in general you will always have them. I have always laughed about having Crohn’s and stayed positive about it but I have let it control some of my long term goals. I was afraid to go back to school and I was afraid I wouldn’t be able to get through nursing school without getting sick. I was ultimately afraid of success because there was a chance of failure. I wanted it, but I was too focused on the risk and not the potential reward. I have reached a point where I have real goals and I will reach them, even if it takes me longer than most. Yeah it’s nice to hear someone tell you they are proud of you, but an even better feeling is confidently being able to say “Yanno what, I’m really proud of myself”.

I have never been so happy with myself as an individual, ever. Yeah things go wrong but when they do me being happy with myself allows me to get over it and continue on. I’m not saying my life isn’t pretty frustrating right now because it is but I’ve accepted the fact even when it is there’s still no reason not to be happy about something. Right now the most important “goals” in my life are school and sounds mediocre but staying fit. This is one thing I know I can have control over and it is really an awesome feeling, especially doing this while battling a chronic illness. My quality of life right now, in this moment, is all that matters and I know I can optimize that by staying physically fit.

But anyways back to WHYYYY (lol). I just don’t understand it anymore. Life is one big leap of faith. There’s no need to complicate life. If you want to say something, say it! If you want to do something, damnit, do it! Stop hesitating. Don’t do something if you don’t want to. Be a little selfish sometimes. Put your trust in someone, they might surprise you. Hell, you might surprise yourself! But also on a side note, never forget the little things in life. Do something nice for someone else, compliment someone, make someone smile. We feed off of each other’s energy, and don’t you feel good when you’re the reason someone might be a tad bit happier today? Just let go and stop being so concerned with what bad might happen, because you never know it might just end up being the best thing that has ever happened to you.

life

Annnnd that’s a wrap on my corny, inspirational, venting sesh. Take it for what you want 😉

-xoMichelle

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