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!

 

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

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

Being Healthy With Unhealthy Insides

  fit

I’ve been doing a fair bit of research on this new concept health gurus have put out regarding “clean eating”, gluten free diets, and those different lifestyles. Although I have always been an athlete and active person I haven’t paid a lot of attention to my diet until I took a exercise science and nutrition course. I then realized, it is a very important part of being healthy and fit. Although I wasn’t able to finish the nutrition class I learned a lot and became very interested in health and fitness, I even thought about majoring in nutrition.

Having Crohn’s disease doctors and nutritionists always said I had to stay away from certain things, follow a gluten free diet, and so on. I never thought my diet actually affected me and my insides that dramatically. That was kind of ignorant for me to think because I have a digestive disease lol. So this past year I’ve read a lot and tried some different things that I’ll share with you all. I realized I can be healthy, but I have to tweak my diet so my stomach doesn’t flare up. Now, this of course is different for everyone because unlike most diseases Crohn’s varies SO much from person to person.

First, I tried “eating clean”. This meant, everything I ate was fresh and no processed food or extra sugars. I ate only fresh fruit, fresh veggies, natural peanut butter, and things like that. Nuts, seeds, whole grains, and homemade everything. NO extra added sugar what so ever, the only sugar I ate was the naturally occurring sugars in food. Well, this was a recipe for disaster (no pun intended). All of the fresh food made my stomach burst into tears. The pain, it was unbearable. Although I didn’t show other signs of a flare this definitely irritated me to no end. Now even though it pains me to think (not literally), the processed food for some reason sets better with me.

A funny story that brings me to actually (I get side tracked pretty easily). When I was younger the only thing I could eat in a big flare up was McDonalds chicken nuggets. Nothing else. Gross, I know. My doctor questioned it but as with Crohn’s I would rapidly lose a large amount of weight and anything to keep the weight on he would say “go for it”. I’m not sure if anyone else has experienced something like this before, but it is even odd to me. I can’t say anymore that McDonald’s does me good, but my symptoms have also changed substantially as I’ve gotten older (another mystery of Crohn’s disease). Now, during flare-ups because I have so much pain and bleeding I rely on Powerade and packaged soup.

But anyways, I stopped “eating clean” and now I just eat healthy, or my kind of healthy.. I don’t obsess over my diet but I make healthier choices. When making healthier choices and feeling the results, grabbing for that cookie isn’t as tempting. But, if I want smoothiethat cookie, or a bowl of ice cream bring it on!

Another rage now a days is cutting out carbs. I would never and I could never cut out carbs completely. They say a healthy way of getting carbs is by eating whole grains, nuts, seeds, and all that stuff that is absolutely TERRIBLE for us Crohnies. Like I said, I tried this… and I paid for it with days of pain getting up to an 8 or 9 at times. So now I just stick to getting carbs and sugars through fresh fruit (mostly without the skin due to it being harder to digest) and tortillas and things like that. But, if I want a big fat bagel, I will have one. I think that is the most important thing in eating healthy. You can’t obsess over it and if you want something every now and again, have it! Also, an easier way of eating my greens instead of a salad, or even some cooked veggies are hard to digest, I put spinach or kale in smoothies. This sounds bad but its actually delicious!

Another tip for Crohnies: when you’re having a bad day stomach wise a good option is fasting. Not completely but usually I’ll pack my fridge with fresh or frozen fruit and do a day or two of JUST smoothies or if you have a juicer that works too! On these days I make sure I drink plenty of water and 3-4 cups of green tea (which is a great detoxifier too!) A liquid only diet is something doctors would do way back when (and some doctors still recommend it) to give your insides a break. On these days that I do this I usually don’t go to the gym. I sometimes will actually get in the routine of this once or twice a week even when I’m feeling good. It gives my body an extra boost and motivates me when I get off track and have been eating badly.

I have a secret too. Food is huge with keeping you “regular” if you know what I mean. And I’m talking everyone, not just people with digestive issues. My dad has sworn by the cereal Total. I didn’t believe him until about two weeks ago when I tried it. When I’m not completely flaring, I am mostly constipated (one extreme to the other lol). I had a HUGE issue with this. I was taking laxatives daily, and tried just about anything. Well, I stopped being stubborn and listened to my dad and WOW, worked like a charm! One bowl a day is all I needed and if I don’t have that one bowl a day, I look 5 months pregnant with all of the gas and poo stuck up there, no exaggeration. It’s not just the fiber either. I’ve tried taking fiber, eating more fiber. It’s the type of fiber and combination of things in it. It is also awesome for getting all of your vitamins! No need to take a multivitamin (which are overrated if you have a balanced diet and aren’t deficient in anything).

Another part of being healthy is getting regular exercise. I’ve shared converworkoutsations with people who would love to go and workout but their joints are just too bad. I can sympathize greatly with this but if you have this problem go back and read my post on my joint pain and what I take for it, it works wonders! I try to get to the gym ATLEAST 2 or 3 times a week. It boosts my mood, especially if I haven’t been feeling good and it also keeps my physique even if I only have the energy to walk on the treadmill for a half hour. Since my back injury I’m pretty much back full force but I have noticed exercising my core takes a toll on my stomach. It sounded dumb to me at first but if my stomach muscles are sore from a lot of ab workouts I tend to have intestinal pain and tenderness a couple days after (not just my abdominal muscles, I can feel the difference). I don’t know if any of you have but I thought it was a little weird seeing as this hasn’t happened to me in the past.

I take pride in my body and even though I like my carbs and sweets (sometimes, I don’t have a huge sweet tooth) I think it’s important to realize what you’re putting in your body, especially with a digestive disease. Food fuels your body and most of the time if you eat like crap you’ll feel like crap. Most of us Crohnies can’t change our lifestyle like people with normal digestive tracts but we can tweak elements of our diet. By just changing small little things you will notice a huge difference in your overall health and even in your disease. I try to still cut down on my intake of unnatural sugars because I know our bodies aren’t meant to have those kinds of sugars. An example, I cut out a lot of sugary drinks and juices and now I mostly only drink fresh tea (hot or iced) and water with lemon or other fruit. If I want to sweeten things I add honey, fruit, or stevia. I feel so much better and refreshed. Also, when I don’t drink those sugary drinks my stomach doesn’t act up as much when I eat.

Putting it positively, having Crohn’s disease is a journey and you have to make the best of it. Eating is a huge way of controlling symptoms, shaping your body, and improving your well-being. Eating healthier and exercising normally has made me feel more alive and energetic even on days I struggle through. But, another important thing for your health that a lot of people are deprived of is sleep and it’s time to get those important seven to eight hours of sleep for me! Getting the right amount of sleep (7 to 10 hours) is vital. It goes hand-in-hand with a good diet and daily exercise. Stay healthy my friends! 😉

 yay

-xo Michelle

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