Fall Down, Get Back Up.

Days like this make you appreciate the good days. The frustration of feeling like crap all the time lately is really getting to me. Anxiety of not being able to go anywhere unless there is a bathroom within running distance -__- All of it that we deal with daily has just been magnified lately. Oh, and by the way some ofIMG_1006 you that follow my blog. I did end up getting kicked out of school even after going all the way to the top. At least the President of the school had some sympathy for me, thankfully he let us have some peace in all of this. I just want to give a quick shout out to the Director of Nursing and Dean of Health at STCC for making my life a living hell for two and a half weeks, threatening me via email/letter, along telling me to consider a new profession. (I’m still a little bitter) But anyways, I’m no longer attending nursing school this year, talk about a knife to the stomach. Literally, the stress sent me into a bigger flare than I was already in. But hey, that’s what this life is all about isn’t it. You fall down, you get back up. Everything happens for a reason.

Working my two part time jobs is about all I have in me to do. And yes, I feel like a piece of crap sometimes to the people around me. I feel we (us, Crohnies) often get labeled as “lazy” or “unmotivated” but what a lot of people don’t understand is the strength it takes to get through the day and still keep a smile on our face while doing it. Pain medication has almost become a daily thing now, which I hate, just so I can get through dinner with friends, getting out of the house, etc. But that shit (excuse my French) takes a lot out of you and also makes me pretty emotional.. More than your average girl on her period lol Speaking of periods, being in a flare and having your period at the same time is I think one of the worst things I’ve experienced. Thankfully I’m on birth control where I only have to experience this every three months hah God bless you ladies with complicated Crohn’s cases that get your period every month. I feel for you.

Since my colonoscopy my doctor has changed my whole medication regimen. I came off of the Entyvio and prednisone (thank the Lord). I am now on Uceris, Methotrexate, and Humira… Again. This is my second time on Methotrexate and my third time on Humira. I’ve never taken them together though so hopefully this is the lucky combination. I had a meeting today with my Humira Advocate and after she left I was thinking to myself: “Okay, I’ve had Crohn’s now for over 10 years and in the past 6 of those 10 I have never been in complete remission but I’ve been close to it for a total of maybe 6 months”. That’s kind of craziness. I have hope though that something will work, sooner than later.FullSizeRender (8)

With no cure, that’s all that gets us through this disease is hope. At this point my biggest hope is that these side effects don’t throw me over the edge and have to come off of the med like every other time. I’ve always said with Crohn’s, any other disease, or in a perfectly healthy person: life is quality, not quantity. Even though a lot of the time my quality of life is pretty shitty, the days that it’s good makes it that much better. You don’t know if you’ll be here tomorrow so do what makes you happy and feel good at that time and place. Don’t worry about what other people think, keep that smile on and do you.

-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 

“Hey, it’s me again!” -CD

Hey! 🙂 First of all, today marks almost exactly 13 months of me having this blog! I couldn’t be happier with the outcome of it so far. I’ve talked to people all over the world through this and have met some truly amazing people. This past year has been nothing but a roller coaster. It’s been calming down lately being on Entyvio, but side effects still prevail… You have to weigh though what you’re willing to go through to feel good, and compared to some of the stuff I’ve been through these side affects are pretty miniscule.

But on another note, Crohn’s never fails so remind you “Hey! I’m still here, don’t forget about me!” even when you’re at your healthiest. I’ve had a few days here and there with severe stomach pain and exhaustion. A lot of people think that just because you’re having a bout of feeling good, it means your cured. Well people, there is NO cure for Crohn’s disease! I know people who don’t experience it have a hard time grasping it but it drives me crazy when someone thinks I’m cured just because I’m feeling good right now. We just go into remission (sometimes clinical, sometimes you just know), and that could last weeks, months, and for the lucky ones even years. But it is so unpredictable it could come and bite you in the ass within seconds, minutes, or hours. Don’t get me wrong, overall I am still feeling pretty great, but I’m starting to think my body is programmed that after I feel good for a few weeks it just sends a little reminder, you’re still sick! Don’t forget! lol It’s really frigggen annoying. The other day I couldn’t eat anything without having severe abdominal pain I literally had to concentrate on breathing just to get through them. They’re almost worse than the really awful flares and hospital stays because they interrupt your workout, delicious dinner, class, or whatever you’re doing just to remind you you’re not completely normal. They interrupt your times of feeling so good you almost forget the disease is even there.

I haven’t been in remission in probably 10 years, and if you were to ask my doctor, looking at my latest colonoscopy, I’m still not “clinically” in remission, but I have very mild active disease. Now seeing it written down that sounds crazy I have been constantly battling this for ten years with few to no breaks from it. I’ve been diagnosed for about thirteen years, but I definitely had it several years before my PCP just had a stick up his ass and wouldn’t give me a referral to a specialist. But, like I’ve said before having this disease has made me into who I am. And like people say some things keep you humble, this disease is definitely one of them. Each little “hello, I’m still here” puts it all in perspective. It allows me to live everyday to the fullest because it literally could be your last.

I can’t believe it’s already been a year I’ve had my blog. Thank you to everyone whose been following along and whose read some of it! And thank you to all f my fellow Crohnie’s who have supported me! 🙂

But, it’s time to watch the Bachelor 😀 I’ll catch ya all later!

-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

 

 

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

 

 

 

Independence Finally!!!

Hey strangers! Need to get back on top of writing, I miss it! Talk about a busy week and a lot more to tell you all! I moved into my own place!! I love it so so so much!

I signed my lease last Tuesday and a week later I’m all settled. I worked a lot this past weekend and have barely had time to sit down and relax, which thankfully I have a few days off to do so. The apartment has all refinished hardwood Got my keys!floors and so many windows. Also, not to mention two huge closets in the bedroom for all of my clothes 🙂 The landlord let me paint the walls, which I was ecstatic about, so me and my mom got to work during a big snow storm last week and got almost the whole thing painted! We finished the kitchen and bathroom yesterday and my living room furniture was delivered today. I couldn’t have done any of this without her. She is literally amazing, I don’t know how she does it! Despite living like a caveman with no furniture and no internet/TV for a week it was so worth it. Now I’m all cozy with my pup (Zoey, one of the little white ones) sitting on my couch watching TV. I’m so happy here. It’s safe and the perfect situation.

I finally feel like I’m going somewhere in my life. I know it sounds crazy, but being as sick as I’ve been my whole life there are constant obstacles to overcome and many times I can’t finish things or have had to quit a job due to just being sick. And frankly, it sucks. It sucks a lot. Like I’ve said earlier school has been a serious struggle for me. Something about the stress of it being a huge trigger to my stomach. Having had to withdraw twice because of hospitalizations it got extremely frustrating. Not only just feeling like a disappointment to myself at times, when people around me don’t know my situation and I say “no I don’t go to school” orMy little dining area :)“I took a couple semesters off” they look at me and I know what their thinking, “well you’re going nowhere”. I’m an extremely ambitious person and I want to do a lot in my life, and a lot of people don’t know this because to the outside world it looks like I’m not doing much. I work in a Frozen Yogurt shop as a supervisor and for a local vodka company. This doesn’t exactly sound like I’m making the best living. But, I love my life right now and feeling good is my main priority. I won’t let this disease stop me. And as foolish as it may sound to you, getting my own apartment, taking my finances into my own hands and gaining some more independence is my way of taking lead.

Well, on another note… still on this damn prednisone, down to 20mg though! Face still as my mom calls it- looks like a “lil chubbet”. Thanks mom, at least you’re honest hah! Gotta love her 🙂 But amazing as it is, I am feeling GREAT! I don’t think I’ve ever felt so good in my life and I think that’s why I am so happy. I seriously appreciate life so much when I feel good. It’s kind of weird though because usually if I go any lower than 40mg on prednisone I start getting sick again. That has been the pattern my whole life. I’ve been off of 40mg for almost two weeks now. And I’m still in the washout period of the Stelara which means it is still in my system. I had a talk with my mom about this because it is getting close to the fecal transplant clinical trial. I am actually rethinking it. I’ve been emailing back and forth with my doctor in Boston tonight about it. I think the Stelara is actually working. Woah, yes this is a huge change in plan. I’m very worried that because I am feeling so good with my history of getting thrown into a flare after colonoscopies (which I will have two in a month) I will become sick from that and the fecal transplant won’t work. My doctor pointed out that he thinks the fecal transplant won’t hurt because I can always go back on the Stelara. Which he is right but that raises another issue… Insurance. If I go off of the medication because it doesn’t work it is going to be extremely hard to get them to cover it again. As if it wasn’t hard enough the first time *sigh*. Hours of my mom fighting with them on the phone. I mean, the medication does cost $12,000 for one shot, which is absolutely absurd. This is a huge risk. It’s awful the reasoning behind it but insurance is only getting worse. And thankfully, my mom gets really good insurance coverage from her work. I’m nervous also because I’ve heard the getting the fecal transplant once has been beneficial to colitis patients, but with Crohn’s it usually takes multiple treatments, and this clinical trial is only approved for one treatment. So, my ongoing question is still there of is it worth it. I guess we will only know if I do it or not. I will let you all know what my final decision is!

To close this post onzoie! a positive note, us Crohnies know the struggle. And yes, the struggle is real. Keeping a positive attitude is my main focus of this whole blog. We can tend to get negative and wonder why we’ve been handed this awful disease. Don’t let those thoughts consume your life. This battle was given to you to fight because you’re strong enough to fight it. You’re strong enough to pull through the hard times and show everyone what you’re made of. I’m slowly but surely accomplishing things in my life, and you can too! It might take us a little longer but we can do it. And we will do it.

I’ll be sure to be writing more often!

Kisses!-Michelle