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

Just another day in the life.

I’ve had so many drafts typed up over the past few months but just haven’t brought myself to post, I’ve been trying to get away with anything to do with IBD, which sometimes is just necessary to keep sanity. These last few weeks have been some of the worst. I never expected this to happen a few weeks before school starts. I was really trying to avoid it all but you know you have to call your doctor when you have to get ready for work, meaning blow dry your hair and do your makeup, while sitting on the toilet -__- It’s about that time again, the time where my body decides to go all out sick-mode. What I wanna know is why and when this medication stopped working. I was feeling good before! Like really good! I’ve managed to some-what keep myself busy despite the fact potty emergencies have been REAL. This time around though the pain is almost unbearable and pretty constant. I do a pretty good job at hiding it though, probably why most of the people around me don’t really understand what’s happening unless they’ve had serious GI issues. Even when I’m in a lot of pain I still get out, hang with my friends, and put a smile on. It’s honestly the only thing that keeps me sane. I also still go to the gym, which I’ve gotten a lot of crap for, but I have to do what I have to do to keep my mind in a good place. Even if that means laying on the mat and stretching for a half hour, or lifting 5 lb dumbbells, it’s what I need to do. I could easily lay in bed all day and feel bad for myself but I choose not to. Today’s mindset hasn’t been the best, I feel pretty defeated since I just had to schedule an “emergency” colonoscopy for tomorrow. But it is all about your mind set. I’m lucky (well not lucky) but one of my friends has had digestive problems and I can tell she empathizes with me, it’s nice. A breathe of fresh air when most people get aggravated at me bagging plans or not making any in the first place.

What sucks about this all is I start nursing school full-time in a few weeks and for those of you who have read my previous posts, I am on my last resort medication. I have nothing new left to try. My doctor in Boston has consulted with doctors all over the country about my case. It’s actually a pretty scary thought because we’re all (my doctor, my family, and me) left with the question “what now?”. But I try not to think about it too much. I have trust in my doctor that he will work as hard as he can to figure my stubborn case out. Of course I have started on a heavy dose of steroids (60 mg of prednisone). I have waved goodbye to sleep, and can’t wait to welcome on the new pounds… NOT. I don’t think I’ve ever felt this frustrated before. I finally have my path somewhat figured out for the next couple years (granted anything can happen) but I haven’t even been able to go for what I want to do because this damn disease loves to come and punch me in the gut (literally) right before something important is about the happen. But what’re ya gunna do, you deal with the hand you were given and make the best of it. There’s far worse things that could be happening in life. I’ve always said being a patient like this, going through all this, is the reason I want to become a nurse. Every little obstacle and emotion involved in it will make me a better nurse. It has actually made me a better person.

I’m glad I got to rant a little bit, it’s nice to be back on here since I spend a lot of my time and a lot of effort hiding symptoms, complaints, and what not. I’m not quite sure who enjoys reading my complaining and babbling but that’s alright haha. So since I’m writing now I’ll update everyone who follows my blog with how the next few days go. Hope everyone enjoys the last few weeks of summer! 🙂

-xoMichelle 

The struggle of “sick season”

Prednisone was beginning to be a miracle worker, per usual. I literally felt like super woman lol It was so so soooo nice to be in the gym full force and have energy to get up in the morning and last throughout the day. Today was just one giant step backward. That is, if this is my flare breaking through the prednisone or the dreaded viruses/bugs you see this time of the year. I know that it is inevitable to have days like this, but it was such a drastic change from how I was feeling. That is, after I weighed myself and totally freaked out at the number 93 that popped up in front of my feet. I even got off and back on to make sure it wasn’t just the scale. Nope, it was the truth. I’ve lost about 7lbs in just a few days.

I’ve consistently been on 40 mg of prednisone for about two weeks now. Side affects, oh the side affects. Just noticed my face getting puffy 😦 and my mood swings have been so frustrating to not only me but the people around me. It’s so strange how medication can affect your head. I am like a crazy person one minute and the next I’m in the best mood ever and I know exactly when it’s the medicine. I have tried to control it by recognizing when I get that crazy feeling (I know it sounds weird) and then taking a step backward whether that be just stop talking/doing what I’m doing or explaining to the person I am being crazy towards/around the dealio. It’s hard being on prednisone around people who don’t understand how big it’s affects are lol They don’t believe it can actually make you angry, emotional, super happy, or anything. It’s hard getting anyone to understand anything about the medications we take, how we feel, etc. But all we can do is try.

Although my rapid weight loss I’m not sure if this is my Crohn’s acting up more or a bug/virus. My mom was sick last night and today and I started feeling terrible today. I still have no appetite, to the point where I need to force myself to eat. I know it’s not the healthiest thing (which drives me crazy because eating good and being fit/healthy is so important to me) but when I can’t eat I try to drink a lot of my calories whether it be 550 calorie drinks from Starbucks, juices, or even soda. I am at the point where anything I can tolerate I need to eat. If I lose anymore weight I could be looking at a hospital stay. One thing I’ve been good at this time around is staying hydrated. I cooked a bunch of food tonight thinking I’d eat more if it was already made (it works most of the time) but healthy food just rips up my stomach, ugh. It’s so frustrating. I needed to eat something desperately tonight. I had to resort to McDonald’s chicken nuggets and French fries. I still to this day have no idea how or why that is the only food I can eat when I’m really flaring up but if you have Crohn’s or colitis you know you will do or eat anything you can to keep weight on. Because losing too much weight usually, as I said earlier, results in a hospital stay.

Well I had to take a pain pill because of my stomach pain tonight -___- And it made me feel pretty weak, Weak enough to not want to keep typing lol but my stomach pain is better and I’m a little hungry so I’m gunna try to eat something. Apologies that this post was pretty damn boring but sometimes I just needa write for myself. Sweet dreams everybody 🙂 Happy Tuesday.

-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

Pushing Myself to the Brink

So today was my first infusion of Entyvio. This may sound like a foreign medication to most, and well that’s because it is. It has only been FDA approved since May and then came out in June. I knew this day was going to come that I’d start on my last option (for now), but I just wasn’t sure when. Starting a new medication for me is not exactly a new thing. I have been on almost everything in the book as you all may know from my previous posts. This medicine is a lot like Tysabri (which is a bit more popular, used for CD, UC, and MS) except it doesn’t seem to have the side affects that Tysabri hentyvioas, especially the PML virus which is scary as hell, look it up. When my doctor told me that it was relatively low risk and an infusion once every six weeks I was in! I’m always excited to start on a new medication because it kind of gives me a new light on things, “maybe this will work” goes through my head every time. But this was a little bit different.

I am having so much more pain than normal. I’ve been on prednisone for a week now and usually I am eating the whole household and feeling like a million bucks. Not this time, something is different… I was keeling over with pain this past Sunday and had to resort to pain medication, which I hate to admit. I hate the thought of having to take pain medication, I can usually silently manage my pain and most of the time the people around me wouldn’t even know. Not lately, it’s been pretty unmanageable pain. And the worst part about it is I’m having flank pain too as they call it… Aka possible kidney stones. Wonderful.

I can literally feel my insides swelling. I’m not talking bloating I’m talking tissue swelling. It sounds gross but it’s pretty damn uncomfortable. I eat and I swell. It’s been off and on but also been making me a little nervous that something else is going on. Hopefully not but we’ll give it a little while for this prednisone to work some more and then figure it out.

This all makes me nervous because I am finally ready to grind down and go back to school full force this fall. I have my classes set-up and start next Tuesday towards applying to the nursing program this coming spring. This weekend is also my 22nd birthday and I was hoping to get out and have some fun! I probably will, becIMG_8188ause that’s what I do.. I push myself even when I don’t feel good. Sometimes probably a little too hard but oh well. Like I say “it’s my life, let me live it”. It’s actually KILLING me right now to be sitting in bed exhausted and in pain because I bought some new Nike sneakers and gym clothes today on my way home from my appointment and all I want do is try them out! Lately going to the gym has been the only thing mentally keeping me going. It’s my happy place to feel good about myself and blow off some steam. Even if that only means speed walking on the treadmill and lifting 5 lb. weights (when I’m having an off day physically). Actually I might do that later tonight. Hopefully I’ll be feeling a little bit better after a nap.

It’s frustrating having to be cooped up. I mean I don’t have to be but my body just reaches it’s limit sometimes and I have to take a step back. I’m not sure if lack of sleep because of prednisone or the new medication that did it to me today but I can barely function right now and these hot flashes (prednisone side affect) are god awful. Today I wanted to make it a fun day in Boston with my mom after my appointment but prednisonemy body was telling me otherwise. We headed to the Wrentham Outlets after I was done with the infusion and it lasted about an hour. I was so fatigued, nauseated, and swollen we had to leave. Not to mention my extremely crabby attitude and mood swings (also due to prednisone) didn’t exactly make for a fun time.

Now, this is all just a waiting game. Pushing through each day while I wait for my body to hopefully react in a positive way to Entyvio. I have another dose in two weeks, then four weeks, and from then on every six weeks. My doctor told me it could be up to three months to see how much it is potentially going to work. I’ve decided though, unless I am in the hospital I am not going to let it keep me from school this time. I will not withdraw this semester, actually even if I am in the hospital, I will do whatever I can to keep at it. I need to, for my own mental well-being.

Having an invisible disease is wearing on the mind. Very wearing. People assume because you look good and push yourself that you’re fine. I don’t blame them because how would they know unless they’ve experienced it? Sometimes though I just want to have them walk one day in one of our [Crohnie’s] shoes. It would probably change their life, actually not probably, it would change their life.

-xoMichelle

 

 

Never Stop Living

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

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

 

WARNING: rant in progress…

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

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

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

meee

-xoMichelle

A Little Complaining Does the Mind Good

You might ask why I am up right now.. this early, it’s 6:15am here in Mass. Well, it is because my joints and bones have been yelling for help the past 2 hours. Actually, not just yelling they are full out screaming. The pain I am in right now is agonizing, I don’t know how I’m really even thinking. Although my knees and hips are in the worst pain it’s all the way from my knuckles to my toes. It is more of an annoyance though because there is not a medication or anything that will make it go away. Rubbing and massaging my knees and legs helps, but it’s hard to have the patience to do it myself. I feel like an old woman, and if you are a Crohnie you know exactly what I’m talking about. It is probably my own fault though (in combination with getting ready for the clinical trial having to make myself sick basically) because I haven’t been taking my glucosamine and chondroitin, man that stuff is a miracle worker. I was on a good stretch of taking it but then sometimes popping huge horse pills every day can get just old. Until you soon remember the reason you started taking them in the first place that is..

I have been wondering, this is for my fellow IBD patients… I know joint pain is very, very common with IBD but do any of you get bone pain? When I say bone pain I’m talking a severe aching pain coming from inside of your bones. Yes it is as bad as it sounds. When I was on Tacrolimus I would get this agonizing bone pain and my doctor never had an explanation for (along with them not knowing a lot about a lot of the other side affects we have). I would be up all night long tossing and turning, face cringing, and sometimes even tears completely out of my control pouring out. I am not exaggerating on this one either.. It’d get so bad I’d make my boyfriend (at the time) stay up and rub my legs for hours (where can I find another one of those?! :p) My doctor then one day told me he read something about that medication causing bone marrow to swell and it would get worse with weight bearing. Which was exactly my case. This kind of made me cringe, I didn’t even know bone marrow could swell. But then again, pretty much anything in your body can. But I’ve been off of this medication for quite some time and I occasionally still get this awful bone pain, like right now as we speak. My doctor told me once it might be fibromyalgia… And I laughed in his face, not literally but I wanted to. I know that is just a label for people having pain that the doctors don’t know how to explain, he basically even told me that. Anyways, I’m starting to think it’s just the Crohn’s itself causing it. Any thoughts? 

This actually probably isn’t early for all of you other people out there who have work and are morning people, but not me. Not that I’ve ever been pregnant before but I could probably compare it to morning sickness.. It sucks. Most of the time I can’t eat till noon or later. thankfully this prednisone has kept my appetite. But some more complaints just because I’m pretty damn frustrated right now. I got this stupid itchy rash (assuming from the prednisone, I get it at least once every time I’m on it) so I stopped taking it for a couple days. Shhhh, my mom’s going to kill me. Consequently I started having bloody poo. Yeah disgusting. But this is probably the worst side affect I get. When it happens my stomach/abdomen area is in an awful amount of pain. As you could imagine, having canker-like sores all over your insides that are bleeding. Ouch. Well I decided to take 20mg of prednisone last night, rather than my usual 10mg, to kind of kick myself out of it. When I came off of it for a couple days it was pretty bad, not sickness wise, but the withdrawal side affects I’d like to call them, if that makes sense to you. It’s like my body is going through a withdrawal. Now, I know your not supposed to come right off of prednisone, but 10mg was a safe dose to do this from (just so you all know). I started getting acne like a 14 year old boy going through puberty… Not fun.. Or attractive. Hoping this 20mg will help a girl out and clear my skin up.

This post has been kind of boring but I felt the need to complain a little bit. Get it all out. Annnd I just had a hot flash.. Yeah prednisone does that to me. It’s amazing how fast the steroids actually work. This is kind of random but I’ve been thinking about how much my disease has evolved and changed over the years. Six years ago when I was in high school I had pretty much all different symptoms than I do now. It’s like an episode of NCIS where they think they have the killer the whole time but then realize it’s the wrong person. They have to solve the mystery all over again. I never had the pin point and all over pain in my stomach like I do now. I also never had as much nausea as I do now. It was more stomach aches, the sweats (I never showed a fever unless I was deathly ill because of all of the immune suppressants I was on), and lack of appetite. My joint pain wasn’t nearly as bad, but then again that probably gets worse with age.

Well, I’m getting pretty tired. Oh, I almost forgot! I have my first appointment to fill out paperwork, get blood work, and learn how the trial is going to work on Friday in Boston! I scheduled my fecal transplant for next week! Counting down the days to potentially feeling good, but not looking forward to that fun colonoscopy prep! *sarcasm* It will be one of two in a very short period of time. I hate those things. I’ll let you all know how it goes though! I’m going to try to get some more sleep and get my mind off of my aching limbs.

-xoMichelle