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

PrednisoneProbs

I’m still very new to this site and blog but I already love it. I live in Massachusetts so some of you may know it is 1:50am. I just cannot shake these prednisone side effects, one being insomnia to the MAX. And when I say max I mean I started at 30mg/day a week ago (I usually start at 60mg/day) and I have slept a total of maybe 12 hours this whole week. I got to bed this morning finally at 5:30am. This drug is my worst enemy but at the same time my miracle worker. I am currently on Stelara, which is extremely new to the digestive disease world. I get an injection that my mom (she’s a nurse) gives to me every 8 weeks. Well, these damn colonoscopies give me nothing but problems. Everytime I have a colonoscopy it throws me into a flare. I think between the prep and the irritation of the actual procedure it makes me extremely sick afterwards. I had my usual yearly colonoscopy to make sure my medication was working about a month ago and I was ecstatic at first because I was feeling great! Needless to say my doctor had a different view of my backside. I was still full of inflammation. Great!

Next step… Prednisone. Well I was not too thrilled with this. He tries to keep me off of it as much as possible but sometimes it’s the only thing that gives me that extra little boost. I have been preparing myself for the constant eating binges, gaining that bloat weight, and the famous moonface. About two years ago I was on it for 9 months and let me tell you, I am 5 foot even and 92 lbs.. It wasn’t too pretty. Although I noticed it mostly myself it takes a toll on your confidence. And this is not weight from eating or regular fat, it is all hormonal from the steroid. I was an avid gym goer and a very healthy eater. It took me about 6 months to loose the 20 lbs that I had gained. This drug is the epitome of frustration.ImageBut never have I had this insomnia issue with prednisone. I have tried taking sleeping aids, Nyquil, my nausea medicine (it makes me sleep for days), Benadryl, ANYTHING! Nothing is working and I think I am going crazy.

One other thing I was not prepared for is the toll Prednisone takes on your body as a whole. I was having a lot of back pain about two years ago and finally got a MRI this year after several trips to physical therapy to see what was wrong because the pain was getting unbearable. Turns out I have a herniated disk in my lower back (which is common for the athlete that I was my whole life), but along with that I have arthritis and bone degeneration in my back.. At 21 years old this isn’t something you want to hear. I wake up every morning feeing as though I have the muscles, joints, and bones as an 80 year old woman. I did recently have a cortisone shot in my back and going for my second one next week!

Although sometimes you have a pity party for yourself you realize it isn’t the end of the world. I force those sneakers on my feet still, throw my hair up, and walk confidently into the gym like I used to. I might not be able to run and do the stuff I did before but I sure as hell am not letting this stop me live my life to the fullest.

#prednisoneprobs