Tacos Are Now On The Naughty List

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Wednesday started out innocent enough.  I dragged my lazy butt to work, worked the morning away, and then went out to a great Mexican joint down the street with two of my managers.  I’ve been there a few times, and every dish I had was fantastic.  I went low key, tacos (real tacos) with beans and rice.  All foods I’ve never had a problem with, and let me tell you, they were delicious.

Back to work I went, and in a couple of hours, my stomach started bothering me.  With having Crohns Disease, that’s not completely out of the norm, but I hadn’t eaten anything I couldn’t tolerate.  Whatever.

Once I got home, I decided to skip right over dinner and go lay down.  I was feeling pretty nauseated, but again, that’s not out of the norm lately.  I figured I’d go sleep it off.  Well, I slept… for an hour.  That oh-my-god-I-have-3-seconds-until-I-hurl feeling woke me up and I stumbled straight for the toilet.

I have never puked that hard in my entire life.  Not even that one night in my early twenties where I didn’t have to pay for patron shots and consumed enough to cost one of my paychecks if I did.  Never.  Puked.  That.  Hard.  The only time I had thrown up that hard was back in my teen years when I got myself a good ole case of food poisoning from an under-cooked burger.  Remembering how long that lasted, and the relief I got in the ER, I figured oh well.  I had the boyfriend call my GI (with Crohns, you can never be too careful, I figured worst case scenario, he couldn’t say I didn’t tell him I went to the ER) and then promptly drive my puking self all the way to the hospital.  I spent the ride in the backseat going “oh my god, where are we??!  Why are we not there yet?!!?”

The ER I frequent is staffed with some very wonderful doctors and some sweet nurses.  They’ve never questioned me when I have shown up… for any reason.  I’m pretty knowledgeable about my body and have a pretty extensive chart.  So I explain that I think I have food poisoning, and yes, I have Crohns.  Mr. ER doc doses me up with some Zofran so I can stop puking, and orders an x-ray to be safe.  I curl up in my ER bed watching the kid and boyfriend play Minecraft on the tablet.  Half an hour later the doc comes back.

“The X-ray showed a loop of intestine that may be blocked, I hate to do this, but I want you to have a catscan to make sure you don’t have an obstruction.  Especially with your history.”  I agreed but had to fight off the urge to roll my eyes.  I’ve had so many obstructions, I’ve lost count… this couldn’t possibly be one.  I was absolutely *fine* this morning, no pain, and plus, I usually don’t puke until the later stages… and I couldn’t have crossed my obstruction timeline in a third of the time.  :::Pukes::: More Zofran please!!!  Oh god, I have to drink contrast??!

Insert catscan here, insert horrible joke about glowing with radiation.  Insert nurses prediction on where said contrast was going to end up.

When I got back from the catscan, I sent the boyfriend and kid to sleep out on the couch in the waiting room (way better than the chairs they had in my little hole).  I figured I had food poisoning.  In another hour the Zofran would kick the crap out of whatever pukey little bug I had, and I’d be off to sleep at home.

No sooner than I settled back in my little bed, I had to grab the puke bag.  The nurse called it… all that contrast came right back up.  As I’m sitting there puking, the nurse runs in with the doctor.  Apparently I somehow do have an obstruction, and now they want to put in an NG tube.  I had already maxed out my Zofran, and seeing how I’d rather sit on the toilet for hours, rather than puke, I agreed.

The tube helped, and I was able to get some pain medication and sleep.  (Bonus: I accidentally pulled it out later… and I got to keep it out! Hell to the yeah!)  I stayed in the ER until morning since the hospital was full, but they finally got me a room… which is where I am now.  It’s Friday.

After speaking with the surgeon/a radiologist/my GI, I basically came out with one hodge-podge of a story.  Surgeon and radiologist see a stricture, a bad one at that… with little to no inflammation.  That explains my lack of symptoms… and skipping from cramping straight to puking my brains out.  GI doctor was angry I didn’t want to take one kind of my medication anymore, and we had to have the “quality of life” argument again.

[Something I’ve learned along this journey, is that quality of life is really, really important.  I would much rather have a couple of bad days here and there and *not* take a medication than take a medication that makes me lose my hair, lose my appetite and gives me the worst fatigue I’ve ever felt (and coming from someone who deals with fatigue on a daily basis, that is saying something).  I’d much rather spend time with my family than all my time sleeping.]

So long story short, barring some horrible incident when I’m finally allowed to eat again, I’ll be allowed to go home “sometime this weekend”.  I’m just hoping for before the massive snow storm that’s supposed to hit Saturday night.

I really wish I was home right now, I’m pretty home sick after only a few days.  It has nothing to do with the care I get here, I drive 40 minutes past 4 other hospitals for a reason, I just miss my family and hate being reminded that I am indeed mortal.  I know that my little one is having a sleep over with one of her favorite people ever tonight (thanks Jess!) and is having a blast… but I still miss her.  After losing so much time being sick, I hate losing any time at all.

I’ll be finally switching to the new medication I’ve been rambling about (the name escapes me at the moment) and I did agree to go on the shall-not-be-named medication I hate, but at a low low LOW dose (I was on such a high dose last time, it was beyond what “high dose” is considered normal- hence the horrible symptoms.)  I’ll also be stuck weaning off of the prednisone again too.. because yup… during a morphine nap, a good ole bag of prednisone got hooked up to my IV.  Sneaky Sneaky.  Maybe they’ve caught on that I’ll try to refuse if I’m awake.  To think, I *just* got rid of the moon face too.  That’s a whole different blog though… one I don’t feel like mentally visiting right this second.

All I know is that I really, truly hate NG tubes, seeping IVs (my hand doubled in size overnight) and now apparently tacos.  Oh tacos.. you will be missed.

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Infusions and Awareness Week

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Mouse Juice Time

                       Mouse Juice Time

December 1-7th is Crohn’s and Colitis Awareness week.  It’s only fitting, I suppose, that I am in the hospital for a few hours to get my Remicade Infusion.  As you can see from my expression up there, I’m not having a good morning.  I’ve had a headache (no fever so the infusion will go on!) for 3 days, and I can tell it’s infusion time since my Crohns Disease is acting up.  It was a hot rush this morning to get out of the house, between getting the kid ready, and getting myself out of the bathroom, I was damn near in tears.  I barely managed to get the short kid off to school on time and then had to rush back to the house to use the bathroom.

I had already called in my height and weight for my infusion bag to get sent to pharmacy, but pulling into my driveway, I realized I asked them to mix it early.  I had thought my appointment was at 9am, however it was set for 10am.  All the rushing around, and getting anxious being stuck in the bathroom for nothing.  Sitting in traffic I about lost it.  I did lose it after having to stop at a gas station on my way in to use the restroom.

So here I am.  After 3 tries, my infusion nurse realized that my hands/crooks of my arms were not working for IV lines, so I now have a line in my inside forearm.  Whatever works I guess.  He noted that over the past few infusions, it’s harder and harder to get a line (regardless of how much I drink or eat before hand).  At least he’s willing to get creative.  However, being stabbed repeatedly isn’t my cup of tea after a rough morning.  ::Sigh::

I’ve been doing alright lately.  I took myself off of the 6mp a couple of months ago, I had noticed no difference in my symptoms, and the side effects were obnoxious.  Most notably was a loss of appetite (I like my food dammit) and hair-loss.  The hair-loss was one of the bigger reasons why I chopped my shoulder length hair off, that and my innate ability to not to do my hair (also known as lazy-ass syndrome).   I figured screw it.

After I took myself off of 6mp, the frequency of my Crohns symptoms actually decreased, and my hair stopped thinning so rapidly.  Finding out that my disease had spread to another part of my intestines prompted the idea that the Remicade wasn’t working anymore… which led to the super high dose of 6mp.  Welp, here I am.. still kicking on Remicade.  Hanging in the balance to see if it continues to work, or puts the new area in check without the 6mp.  I’ll argue my case later with my GI.  If Remicade ultimately fails, I’m still up for trying that new medication, but whatever.  Take it as it comes.

One of the things that really, really gets to me, is the fatigue.  I am constantly tired, getting off of the 6mp seemed to help that a bit, but I’m still exhausted by mid-day.  Hell, over the holiday weekend, I was exhausted a couple of hours after I woke up.  I think that’s the most frustrating part of it.  Even if I’m virtually symptom free for a couple of days, my joints hurt like a … well you know.. and I’m tired.  I can deal with pain and diets, but being tired for what seems like no reason just pisses me off.

This disease sucks, for a lot of reasons, but it’s tough to deal with because it’s a so-called invisible disease.  I don’t look quite so bad on the outside… hell, when I was at my sickest I kept getting compliments about how great I looked with the weight I had lost.  All other people know is that I’m always tired (some think I’m just too lazy to do things or just want to blow off plans) and that I use the bathroom a bit more.  It’s hard explaining to people that it’s more than a tummy ache… over and over again.

No matter what you explain, or how many times you explain it, the social effects are… depressing.  I’ve had family get upset because I didn’t want to continue at the pumpkin patch (after having an accident).  I’ve had coworkers/bosses not realize that I am serious about going home after using up all of my extra undies and Imodium.  I’ve had friends get mad when I don’t want to go out, or cancel plans because they don’t *see* my sickness, or “come out, you’ll feel better once you get moving”.  The fact that I use up my spoons some days before I even make it into my clothes just pisses people off.  (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/)

It could be worse though, and has been worse.  Most days I’ve been managing to keep a positive outlook, some days though it just sucks.  Over the past handful of years Crohns and UC have gotten a lot more attention than before, and awareness is spreading.  Some days I’m thrilled that people are learning about IBD, some days I could give a fuck less.  Some days, even my online support network can’t even get me out of a funk.  Either way, the best thing to remember is that those of us with IBD are not alone.  It’s okay to feel crappy, it’s okay to say NO when you don’t feel up to something, and it’s okay to feel upset.

Days like today?  Where I used up all my spoons before I put my shoes on?  I’ll make it, you’ll make it, and things will get better.

Vanity, Disease and Pushing Through.

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No matter how hard I try, vanity breaks through each barrier I build. 

People with Crohns Disease, or other “invisible diseases” may not always look sick.  Sometimes we do, but sometimes we look “normal”.  Normal to other people anyways, I know I look pretty healthy to the outside world.  People who have known me for years might be able to see a difference, but to strangers?  To acquaintances?  Normal.  

To myself?  Even when I’ve been preparing for the effects of the disease, of the medications, eventually when I look in the mirror I’m shocked.  Over the past 7 years, I’ve been through 18 sizes and then back again.  Since my weight has fluctuated so much, I’ve also changed my style several times to accentuate what I did like about my body.  I’ve changed my hair, I’ve changed my clothes, I’ve changed everything… all in the quest to feel comfortable in my skin.  Regardless of what I do, how much I get my head in order, that moment still comes.  That moment where I look in the mirror and think “What. The. Fuck.” and have to fight the tears.  

Without fail, when I’m super sick, when I’m flaring, I tell myself that I won’t care about the effects of my medications, of prednisone, of 6mp, as long as I start to feel better.  I shake my fist at the social brainwashing and promise that I’ll love my body regardless of how it looks.  I tell myself that I won’t care as long as I’m not living in the bathroom or in too much pain to go to the park.  

Each and every time, with out fail, no matter how hard I shake my fist, I fail.  

Back in May I was hospitalized when my Crohns spread to a new part of my intestines.  I thought it was just another obstruction, when I learned that despite my infusions that my disease spread… I was devastated.  I had been so close to “remission” for more than a year.  I had a taste of normalcy.  Usually I refuse Prednisone at any cost, I hate the side effects, physical and otherwise.  However, knowing that my disease had kept on trucking through my innards, I said fuck it.  Prednisone it was.  Every Crohnie knows, prednisone will give you a hell of a fighting chance to get out of the hospital.  

Fast forward 3 months.  No more hospital for me but I still feel like crap.  Now I feel like crap and loathe what my body has done.  I’ve gained 30 lbs (which is about right for me on prednisone), I have “moon face”,  I have excessive body hair, I have thinning hair ( I think that’s more from the high levels of 6mp I’m on than Prednisone ) and the latest development?  I have a bald spot.  Yes.  I’m 28 years old and have thinning hair and a bald spot.  Granted, the bald spot is the size of a quarter, and trust me when I say that you wouldn’t notice it unless I pointed it out.  The point is is that *I* know it’s there.  Just like all the other changes my body has gone through in 3 months.  

I know I don’t look bad, I know I look alright, but I don’t look how I want to look.  My neighbor’s grandma thought my weight gain was because I was pregnant (hahahahahaha), my friends love my short hair.  I got lots of compliments on the new summer style.  My boyfriend isn’t even remotely phased… in fact, I think he’s enjoying a couple of areas that have accumulated some of the extra weight.  (insert eyeroll here) 

I don’t see a little extra weight… I see where the weight is sitting.  I see puffy arms, ankles and a new belly.  I see fat cheeks. I don’t see an awesome new hairstyle, I see thin hair and a bald spot… oh wait!  There’s the hair… on my face and my arms.  I definitely have a new appreciation for Nair.  I don’t see a new summer style, I see hiding behind my clothing.  I see loathing and tears.  I see the love lost for my body.  

Ugh.  That actually burns my brains to type out that I’m not happy with my body.  I don’t like admitting that.  I know that it’s temporary.  I know it is, I’ve gone through this cycle more times than I’d like to remember.  I know that just as soon as I get used to this slightly heavier body, my weight will stop dropping.  I know that my hair will come back, I know that the extra hair will go away.  I know my body will change… again.  

I don’t know.  I guess this time around I’m having a particularly hard time with the changes my body is driving through.  I know it’ll get better, or at least change again, but it’s tough.  I’ve decided to treat myself a bit these next couple of weeks.  Instead of my usual bout of refusing to acknowledge that my body has changed, even temporarily, I’m going to just embrace it. Maybe pick up a few new clothes, new shoes (yes, my feet have swollen a bit) and tomorrow I’m going to go get my haircut by a friend, something a little shorter to hide the spot and thinning.  I think that maybe instead of ignoring my body changing, I’m going to accept it, even if I don’t like it.  

Regardless, writing this all down, admitting it to the internet and my friends has made me feel a little bit better.  Being honest with people and letting my fingers do the talking has helped.  I’m having a hard time, I’m feeling like crap, and I am self conscious.  I’m not happy with how I’ve ended up looking, and that’s okay, and I’m telling people instead of hiding it.  

 

Positively Negative

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What’s the saying?  If you think positive thoughts, positive things will happen or some shit like that?  Let me just start out by saying… that’s crap.  At least when it comes to anything that could possibly involve other human beings.

I am stressed out.  What’s new?  Things at home are actually really good, it’s mostly my work that’s starting to get to me.  With the exception of one night (and tonight) that I ended up having chest pains, I have been working 60 hours a week for a bit now.  When you look at my salary broken up among those hours, it’s… well painful to say the least.  Add that to the time I’ve lost enjoying the summer with my daughter to paperwork and phone calls?  Covering someone else in the office?  Helping out?  Yeah…. no.  The boyfriend and I had to have the come to Jesus talk, discuss what’s right for our family as well as my own well being… and I need to figure out some changes.

It’s just super frustrating.  I start out each work day in a positive (albeit sleepy) mood, but without fail, some person has to fuck up my day.  I swear, I’m not meant to work with the general public.  I’m not sure how I survived all those years in sales without being convicted of homicide.  I highly dislike being in a position where someone else can fuck up my shit.  I know, “but Sarah, you don’t have to let them” … that’s horse crap and you know it.  This is why being self employed always appealed to me, but how do you start your own business when some other company takes up your time? 

That, and well… what business could I start that has nothing to do with other humans?

Right.

At this point I feel like I should apologize for doing nothing but bitching in this post.  Whatever.  I’m burnt out and stressed out, and ready to walk.  Blogging is my outlet, so tough shit.

Just some how got to keep trucking, with out throwing myself away.  Just have to find my balance between work and home and more importantly how to say no (in all aspects of life) and speak up if I feel I should. 

Time for some tea and to listen to these thunderstorms.  Got a long week ahead of me, including seeing my pops and Remicade, which is perfect timing since I’m running to the bathroom more times than I’d like and my joints are on FIRE.

Here’s to Monday being a bitchface, and here’s to the next day.

Cheers.

Prednisone Blahs and Crohns Pain

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I think I jinxed myself earlier.  I had been talking with my Dad and told him I was feeling alright when he asked.  As the day has worn on I’m starting to feel pretty crappy (no pun intended).

That’s me right now, I’m sitting in my car on lunch. What you can’t see in the photo is how bloated I am, and my face doesn’t look quite as swollen as it feels.  I have what I call a prednisone fog/headache going and just generally feel achey. 

If I could do anything right now, I’d go home and curl up for a nap until Ashley gets off of school.

I guess I shouldn’t complain (too bad) because I did have some moderately low pain days, but it’s always short lived.  Add the prednisone side effects and I am miserable.

I did talk to my GI nurse earlier today though.  They finally got the blood test back.  My body did develop antibodies against Remicade, so I have an appointment to go over Cimzia next week.  You know, I’m actually pretty down about it.  Remicade worked really well for about 2 years, switching to injections again isn’t something I’m looking forward to.  Not only that but the battle with insurance has just begun.  Add that to the almost $20,000 I’ve racked up in hospital stays this year (pretty expensive sleepover if you ask me).  Le sigh.

Oh well.  Gotta keep moving forward.  What choice do I have?

The Battle Begins

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So it looks like I’m being discharged shortly, I can’t wait to go home.  I’m feeling a bit better and can keep food down with minimum pain, and I am most certainly looking forward to stopping at Panera and grabbing a bread bowl with cheesy broccoli soup on my way back to the house.  As always, despite my bitching, all of the nurses, aides and doctors were wonderful here.  They were even wonderful the couple times I lost my shit because I was in pain/tired/or just a bitch.  Just another reason why I keep coming here for treatment despite it being 45 minutes from home.  Anyway, I am escaping!  Leaving!  Running home!  I can’t wait to see my kiddo and all the furry minions at the house.  :)

One part I’m not looking forward is getting my medications.  I am no longer going to be getting my Remicade infusions, I am being switched to Cimzia, which is an inject-able.  It’s not necessarily as strong as Remicade according to my GI doctor, but I’ve already built up a resistance to Humira and Remicade so I’m running out of options.  The nurse I have is looking into where I need to get the prescription from, and my GI already started the battle for it with my insurance.  Cimzia before insurance, is approximately $3,000 before insurance for 1- 200mg dose… and I need 2 doses for the first month.  My healthcare also will not cover it the drug with out “strong documentation” that all other drugs have failed me.  *sighs*  I always hate this part of it.  The last time this battle played out (beyond the one with Entocort, which I won pretty quickly) was when I went on Humira.  It took months to get my health insurance to approve it, and by the time they did?  Humira stopped working for me.   Yeah.  So I’m thrilled.  Beyond that I’m staying on my prescription for 6mp as well as taking favorite of all drugs : Prednisone (are you guys ready for mood-swings and moon-face???),  I can’t wait.

I don’t know.  I’m doing my best to not be stressed out about it.  Just focusing on getting home, getting relaxed and finishing getting well.  I want to be in top shape for my kiddo’s 7th birthday in a couple of weeks.  Wish me luck, and Crohns be damned.

Grown Up Stuff: Because I have nothing else to do.

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Another dreary day here in the hospital.  Looks like it’s pretty damn depressing outside too, which frankly makes me feel a little bit better.  I always hate being locked away here when it’s gorgeous and sunny outside.  Here in the Midwest it sure seems like Spring/Summer are never going to arrive.  It’s the middle of may and we’ve only broke 70 degrees a handful of days, it’s not snowing which is a definite bonus, but not quite nice out either.  I’m pretty sure that it’s going to be a very mild summer.

Anyway, I am feeling quite a bit better.  I’m still moving a bit slow and am severely fatigued, but I’m willing to bet that that’s more due to the lack of food… the last solid food I ate was 6 days ago.  I’ve been able to have some liquids for the past two days, but the nurses are still working on getting a “general/soft diet” approved for me.  Wish me luck, my appetite is coming back and I’m starving!!  I certainly don’t feel like roadkill like I did earlier this week though, and I reluctantly have to give credit to the drug cocktail they have me on (no pain killers for more than a day!!) as much as I don’t like it.

So normally I refuse Prednisone as long as I can.  I hate that damned drugs and pretty much anyone with an autoimmune disease does.  It’s just a horrible, horrible drug… but it works.  It’s the quickest way to get out of a flare (which is perfect for me right now since it seems like it’s the new section of inflammation that’s actually causing me so many issues) and I need to be back at a functioning level as quickly as possible.  So back when I was still in the ER, they started the IV bag before I even had a chance to ask what it was, so back on Prednisone I go.  I’m looking forward to getting better… but adding moon-face, skin problems, skin pain and joint pain/swelling to the mix?  Oh, and I can’t forget my favorite side effect… Mood Swings!  Booyah.  In people who already have “mental issues” (I have an anxiety disorder) it brings it out a bit more.  *Sighs*  Oh well, I’ll just count down the days until I can get off of it.

Besides Prednisone, it looks like we’re almost 100% sure that I’m going to stop taking Remicade.  My GIs want to switch me to Cimzia, I’m not looking forward to having to fight tooth and nail to get my insurance to cover that, but like I said before, my doctors have already started that fight for me.  From what I understand, I’ll also be upping the dose for my 6mp as well and most likely be coming home with every Crohnie’s favorite antibiotics (just guess).  (Side-note: since Remicade/6mp are both classified as Chemotherapy Drugs now, I have to have a special nurse come and give me my meds… pretty freaking weird if you ask me.)  So hopefully with all of that (and I’m assuming I can discontinue the Entocort, since that was just us trying to avoid Prednisone) I can start getting back on track.

Whatever.  All I know is that I’m super antsy and the longer I stay here, the lower my mood slumps.  I’m missing my kiddo pretty bad too (even though it’s only been a day and a half since I last saw her), she’ll be coming up here for dinner tonight after school, so I’m excited for that.  Hopefully I can go home soon, I miss the boyfriend and the animals too.  *Sighs*  Back to surfing the internet, it’s almost time for me to harass the nurses for food again.  I already balanced my checkbook and paid all my bills… I ran out of stuff to do so I did the adult stuff that was on my list.  Blah.