Check this link out

Usually don't post twice in a day but this is hilarious and I just stumbled upon it.

Everything you never wanted to know about Crohn's Disease

The part about the steriods had me laughing so much I cried.  Because I can remember what a nasty, horrible, crazy bitch I was on them.  And then a half hour later I'd be running around the house singing songs and vacuuming.  Yes, that shit is like crack. 

The other good part was the one where he talks about having a conversation while you have a sudden burst of stomach pain and you have to pretend you are still listening to them but really you can only think about the pain.  That probably happens to me once a week.  

Long cartoon but hilarious and honest.  Check it out.

Is it Monday yet?

Thanksgiving today.  Lots of drinking last night.

Oy.

I was supposed to go to the Eagles game today and indulge in deep fried turkey and miller lites whilst tailgating all day.  I was supposed to go with my brother and bunch of people but I didn't make it down there.  I'm mad because I've been watching the news coverage of all those maniacs tailgating with their turkeys and it's hilarious.  I haven't talked to my brother yet but it looks like it was a great time down at the stadium today.

Ultimately I knew I wouldn't be able to go down as early as 2 with my brother and everyone else but I was hoping I could get a ride down at 5 and at least enjoy a slight buzz before going into the game.  After the festivities that happened last night and the delicious Thanksgiving dinner my mom made, it was pretty much determined that I'd be spending the day at home.

Sure, I could have passed on eating Thanksgiving dinner or opted not to stuff myself and indulge in both Apple AND Coconut Custard Pie, but I did.  And now I'm home, paying for it.  So that was my dilemma today.  Stay home and eat Thanksgiving Dinner or go to the Eagles game.  I chose the food.  I think it was worth it.  

Even if I had gone to the game, I've been feeling so shitty lately that I probably would not have enjoyed it.  I'm sure my brother would have had no problem leaving if I had needed to, but I'd rather avoid those situations when I feel it's a likelihood.

I get my Remicade on Monday.  I cannot wait.  I really picked the perfect week to quit my job because I feel like absolute shit.  I spent all day Tuesday in bed sleeping on and off.  I actually fell asleep for the night around 9 on Tuesday and didn't wake up til 11 am the next morning.  I've been sleeping on and off all day today.  Honestly if I didn't woken up by my stomach issues every 20 minutes I'd probably be able to sleep through the entire day.  

My good friend sent me a text to remind me of all the things to be thankful for today.  An Eagles victory, the Terps beating the Spartans, and the Philadelphia Phillies being World Champions.  (That didn't happen today but it counts).  And since my sister says she isn't referenced enough in my blog (which she probably read once) I'm thankful for my sister calming me down this week.  And my brother in law for buying me the most ridiculous flowers that I have been taking care of like they are my children.

Hey, I'm unemployed.  I have nothing else to do.

Bills, bills, bills

I am extremely frustrated right now, as I just got off the phone with a bill collector who really had no tact whatsoever.  I understand the woman is just doing her job but if you want to get money from people who owe hundreds of dollars to a HOSPITAL, they are probably dealing with illness and insurance companies, and I think you should show a little compassion.  I know, she's a bill collector.  Why would I expect compassion?

Bottom line is when you are receiving a treatment that costs thousands of dollars every two months and you are in and out of the hospital, there's a lot of paperwork that gets tossed around.  Way too much, actually.  It's hard to remember that every 6 months you have to reapply for pre-approval for this medicine and that treatment.  It's amazing, actually, how hard it is to get approval for Remicade and keep up with the paperwork.  But if I go to the ER and get admitted to the hospital, I never see those bills.  You don't need pre-approval or messy paperwork for a week long hospital stay.  But for me to spend 4 hours in an out-patient office SIX times a year, I need to jump through ridiculous loopholes and insurance bullshit.  It's something that's keeping me healthy, for the most part, but it's damn hard to keep up with.  They aren't sending you reminders in the mail for pre-approval.  No, they are just slapping you in the face with a bill when the time comes.  

Back to my original point.  During the time I was switching from my mom's health insurance to my own plan, there was a period where even though I was still with the same company, I hadn't applied 4 weeks before my infusion for approval.  So yea, I got a NICE hefty bill for my therapy.  I set up a payment a while back but lost track of things.  Basically because I was in DC for a while and I have about 5 other smaller, miscellaneous medical bills I'm keeping track of.  I know, it's my own damn fault.  But it's still frustrating.  

In other news, my first day of unemployment.  It was going great up until I got that nice reminder about how much damn money I owe.  Now I'm off to take a nice long walk because I'm really not feeling great today.  No running for me.

This disease sucks.

I had my appointment at Penn today with my GI to discuss my progress, or lack thereof.  First of all, it was extremely depressing because there was a man in the waiting room with me who passed out after taking two steps and couldn't even take a bottle of water to his face.  From what I could overhear, he was very ill and drugged up.  I think he had just had some kind of procedure; colonoscopy or small bowel follow through.  Whatever it was, it was sad seeing his wife visibly shaken and frantic.  But it made me think about how blessed I am to have the quality of life I do, even if it isn't the greatest.

For those of you who don't know, I am administered an IV drug called Remicade every 8 weeks which, for the most part, has kept me in remission for three years.  I cannot express to you how much this drug changed my life.  It allowed me to travel, finish school, work, etc.  It healed my fistula which made my life MISERY for years.  But like many who take Remicade, my body has obviously built up antibodies that have reduced its effectiveness over the past couple of months.  This issue is what I discussed today at my appointment.

I have a couple of options.  There are other Anti-TNF drugs similar to Remicade that I can switch to.  TNF is a substance in our bodies that regulates inflammation.  When Remicade comes in contact with TNF in Crohn's patients, it neutralizes the molecule so that the inflammation process doesn't continue.  Kind of confusing, I know.

One of the drug options is Humira, an injection I can give to myself at home (woohoo) every couple of weeks.  Essentially it does the same thing as Remicade but the hope is that my body will respond better to a different type of Anti-TNF drug.  I can't imagine being able to inject myself every couple of weeks rather then spend 4 hours in the hospital.  Don't get me wrong, 4 hours is nothing.  But it's the fact that my whole day is ruined when I get my infusion.  I have to take the day off of work and then I'm pretty much useless the rest of the day because of all the Benadryl they give me.

The other drug my doctor mentioned was Tysabri which I had honestly never heard of before he mentioned it.  Like Remicade, it is an infusion I would have to be administered in the hospital.  It is not an Anti-TNF.  From the minimal information he gave me about Tysabri, it scared me.  It was first approved for the treatment of Multiple Sclerosis and was only recently approved for Crohn's.  To hear that I would be treated with a medicine used for MS was kind of just freaky.  I know many of these diseases are malfunctions in our body's inflammatory process, but it is still scary to think of being treated with the same medicine as people with other, more serious ailments.  Like every medicine out there, my Dr. mentioned that 1 in 3,000 people develop a severe viral infection in the brain from this medication that leaves one either paralyzed or dead.  Scary to hear at first but all of these drugs have horrible potential side effects that may not be realized until years later.  It's all a gamble, I suppose.

The last option, which is what I've decided to go with, is to try Remicade one more time at 6 weeks instead of 8.  Because I am not extremely ill, I do not feel comfortable totally abandoning something that has worked for so long.  I am not ready to give up on Remicade yet and considering my life isn't complete misery and I am relatively healthy in comparison to previous flare ups, I'm willing to give it another shot.  I did feel slight improvement after my last dose, so hopefully one more will get me back on track.  In addition to the Remicade, I'll be taking some suppositories (YAY!) to help control some of the inflammation at the lower end.  Lovely, right?

Well I better get to the pharmacy to drop off this wonderful new script.  Should be a ball.

Did I mention this disease sucks?

"Just Eat"

It's been a week or so since I last posted, mainly because I've been out every night having a grand old time.

For some reason there was a lot going out this past week.  Lots of people going out who I normally don't see all the time.  Because I knew I would inevitably end up drinking, I didn't really eat much last week.  Now you may ask why I would do such a thing to myself.  Ultimately I'd rather go out at the end of the night (or middle of the day, oops) and drink with my friends then eat food which would have tied me to my house all night.  Isn't it ironic that I can knock back ten beers at the end of the night and feel okay the next day but if I consume food, I'm stuck inside tied to the bathroom.  Now before you worry, it's not like I don't eat at all.  I just eat enough to get me by.  I feel as long as I am not losing weight or feeling worse then usual, there is no foul.

My family, on the other hand, becomes quite concerned.  I know it isn't normal behavior but this is my life and this is how I choose to handle my illness sometimes.  The bottom line is, I'm 24, and I have a whole lot of living to do.  I constantly hear "Just Eat" at home.  My mom stocks the fridge with all my favorite foods.  It's a nice gesture and I know she is looking out for my best interest.  She is a Crohn's Sufferer, too.  But as if having Mint Chocolate Chip Ice Cream and Lebanon Bologne in the house is going to force me to eat.  Yes, sometimes it does.  But really it becomes quite annoying when EVERYONE around me is telling me to eat.  I want to invite them all to watch me eat a hoagie and sit with me for 5 hours afterwards.  Maybe they'd get the point then.  

In other news, I'm going to see my GI on Tuesday.  He called last week and was a little concerned so he moved my appointment up to discuss how we can fix what's going on.  Hopefully we can.  There has been talk of switching from Remicade to Humira which scares the crap out of me.  But that's a topic I will discuss after Tuesday when I find out more information.

Until then...

Awake

Ugh. 1:54 a.m.  I just want to sleep.

I barely ate anything today because I was running errands and actually needed to be away from the house.  Not eating worked all day and I had no problems.  

So why, now, am I waking up every freaking half hour.  I just want to sleep.