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.

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Perfect World

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I am honest to god getting tired of this hospital.  I am back at my “home base” for my Remicade infusion, this should be the first one at a higher dose.  I, of course, got stuck in traffic so per the usual I could be seen sprinting through the front entrance to avoid a lecture from the infusion nurses.  My “new” nurse (my regular one retired) asked me how I was feeling since I was here just last week.  OH MY GOD people, is there like some conspiracy theory against me?  Shush.

“I feel fine, thank you for asking.”

“You look like you’re not feeling good.”

“Nope, I’m fine.” 

“You running ragged?”

“Can we get the stabby part over?” 

I won’t even get started with the low blood pressure comments.  Between the infusion nurses and the nurses and aides from last week, I am starting to worry myself that there might be something wrong with me.  Christ, I’ve had “low” blood pressure all my life, and they’ve finally given me a complex.

My point being, if you haven’t figured it out yet, is that I’m burnt out on hospitals.  I’m burnt out on healthcare.  I’m burnt out on being sick.  I know the near future isn’t going to be much easier to deal with (ignore) either.

I’m so hellbent on being “normal” lately, that even though I feel like crap, and ALWAYS feel like I got run over by a semi after Remicade, I’m still going to head into work after the infusion finishes.  I’m going to feel like crap at work, I’m going to be blah, but god dammit I will be smiling and joking around, even if I cry on the way home.  I’ll go pick up my kid and we’ll discuss dinner.  We’ll cook something great and I’ll pretend that I’m okay with not eating it because I obviously would much rather have soup anyway.  These next two days, my sub conscious will sabotage me, I will forget to look up the lab right by my work, and I bet you anything that I will be late for my first weekly blood draw.

I know I’ve been complaining on here a lot, in particular regarding my Crohns.  I am sorry if anyone gets tired of reading it, but in the best way possible, the only way I know to say it: Kiss My Ass.  You see, in real life I’m trying to be normal.  I don’t like to complain about not feeling good, I don’t like to flaunt that.  I don’t like to be seen as weak or sickly or “oh that’s so sad” or be pitied.  This is my outlet for it.  This is where I get it out of my head, because trust me, if you don’t tell someone how you hurt, or if you don’t tell someone that your down because you’re not healthy, you’ll explode.

I don’t know.  I guess I’m just having a rough time.  I’m down because I don’t feel good again, I’m down because the disease is moving to different parts.  I’m down because of the meds I have to take and infusions I have to get.  I’m down because of all of it.

I’m really looking forward to warmer weather.  I’m sure running around the local forest preserve with the short one will improve my mood and up my spirits.  The short one is already making plans to take the dogs on walks through the woods and how we’re going to go visit Grandma and Grandpa up north.  My little one definitely keeps me on my toes, she won’t let me be down for long and will literally jump on my bed if I don’t want to do anything but mope.  I’m glad I have her, even if she wants to take a “gajillion” walks with the dogs “all over the country, no cars!” :0)

I hope things will start looking up soon.  I have things to do and places to go, and frankly this shit is getting old.

A Splash of Bitchiness

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It’s another glorious morning where I woke up earlier than I planned and could not get back to sleep.  It’s one of the most frustrating things for me, I feel constantly fatigued, yet I can’t seem to sleep enough or sleep through the time I wake during the week.  All of which leads to a solid hour of me being grumpy and refusing to do anything short of hovering over my coffee.

I think whether or not I’m a morning person depends on the seasons.  If it’s spring or summer, I don’t mind waking up at the crack of dawn.  “It’s nice out!  Everyone’s sleeping, so why not go read a book on the deck with a cup of coffee?”  Winter?  “Oh, everyone’s still asleep… I can wake up and stay inside… again.”  No thanks.  I’m just tired of the cold weather, I’m tired of being cooped up inside with a kid and two dogs who have been saving all their energy for MONTHS.  I think we’re all going to explode if the weather doesn’t improve here, hell, I’ve decided I’m going to move to somewhere south if it snows on my birthday this year.

Blech.  By the way, if you’re not adding a tone of disdain and annoyance to this entry, you’re reading it wrong.

Moving on.  I’m feeling a bit better.  I can eat pretty much normally now even though I will now be avoiding the majority of raw veggies and anything with a lot of fatty content and such.  Must prevent more obstructions – if I’m going to be obstructed, it’ll be because my body hates me, not because I ate nothing but salad for 2 days.  Oy.  I’m glad to be up and running again, though I am putting extra effort into not thinking about my medications too much.  I’m still not pleased about going back on 6mp, but I don’t want to lose Remicade.  If I can milk it for all it’s worth, then I guess it’s worth a shot.  I’m making a solid attempt at keeping my stress levels down as well, although that’s proving quite hard with work.  Nothing like a 12 hour day to ratchet up that blood pressure!

I’ve spent the last few days basically reassessing my day to day activities.  I’m slowing making little changes here and there that I think could help my stress levels.  Just little things, like pulling out clothes the night before, pre-packing lunches and taking time to just breathe and calm my head down.  Diets changing of course, on top of removing the Not-Crohns-Friendly things, I’m eliminating a lot of other crap.  This winter I feel into a cycle of convenience, gone were a good chuck of “from scratch” meals and healthy snacks.  It is so much easier to just eat a meal out of a box and open a bag of chips.  I know that has a lot to do with me feeling like crap, so back to it we go.  (Which re-routes my thinking to – I can’t wait to plant the garden this year – to – GOD DAMNIT ITS STILL WINTER!!) So far though I’ve noticed my body responding better after just a few days, so I’m going to keep on trucking down this “no processed foods” road and see how it works.

 

In the real world though, I need to shower and get some chores done.  Not to mention my coffee cup is empty.  Have a great Saturday everyone.

Music is the way out.

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One thing I am extra proud of in my family is the amount of different music I expose my daughter too.  Today I just started listening to the new Against Me! album and I’m definitely digging it.  The first thing that pops into my mind is that I can’t wait to get home and let Noodle listen to it and hope that as she gets older the message gets through to her head.  I’m excited that she likes a broad spread of music, from anywhere from The Distillers (She loves that there is a chick punk rocker) to As I Lay Dying to The Fray to Break of Reality.  It may make her the odd kid as she’s growing up, but I would much rather her be a well rounded kid than a sheltered one.  

So I’m still in the hole (and by hole, I mean hospital) and of course, we’ve gone over the 24 hour mark, so I’m antsy as hell.  I’m ready to get up and run a marathon (or at least a few laps around the nurses station.  The one benefit of being stuck here is that I am getting an obnoxious amount of writing and knitting done.  Not to mention the amount of music I’m discovering is ridiculous.  At some point I’m going to have to block out the irritating aide and just slip in my headphones when she’s talking.   Hell, I think In This Moment will block her out just fine.  

Music and writing are my ways of safeguarding my sanity… not to mention reining in my temper as well.  If I manage to do some writing and get some tunes going in my head, I’m a much more tolerant person.  I could be listening to the most brutal metal I can find and as long as that’s playing I can keep my cool and calm.  It’s a nice coping technique I picked up in a coffee house when I was a teen.  The perk I see though, is that my Buddha not only experiences the music I play, but she gets to learn that there are different ways of coping with your bad days beyond just “being happy” or “smile!”.  If I can instill anything, whether it be music, writing, art, SOMETHING, I will feel like I did a good job as a parent.   Hell, I gladly bought her a new sparkle pink glitter journal just for that reason.  If writing helps her sort out her feelings more than talking does, than I’m okay with that.  

Growing up, going through the death of my mother, and of course though the turbulent teenage years, everyone told me that I needed to “talk through it”.  That if I could just open up to people I would be able to be “happier”.  No matter what was going on, I was force-fed this bullshit lie that I must talk, that I must interact and pour myself out to other people via verbal word.  So I tried, and I failed… and I learned to wrap up all of my feelings inside of my head since obviously people expected me to be happy.  It wasn’t until I got mad one night in my pre-teen years, that I sat down to write in my journal and I just let it all out.  All of it.  I wrote whatever I wanted to, instead of what I thought I should be writing about.  I wrote about everything.  That night, I discovered that that was the way I cope.  Up until about a couple years ago, I still didn’t know how to open up to people well… hell, sometimes I still prefer to keep my words in my mouth and flowing through my fingers.  Writing in journals/blogs/letters gave me an outlet to reach people through.  I had a hard time telling someone how I feel, I could just write them a note.  It helped, it still helps, I just wish someone had told me that was okay earlier.  

Speaking of though, I’m going to go write in my journal… the literal one.  

 

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Here's 2014!

Here’s 2014!

I don’t know how it’s New Years Eve, I’m still trying to figure out how Thanksgiving already past and where Christmas went.  For Fuck’s sake!!?!  How am I 27?!?  Yeah, you could say I don’t keep track of time very well.  It seems like I just got my divorce and the short kid was just running around in nothing but her diaper and pigtails.  I blinked and short kid was potty trained, I blinked again and I found my current job.  You guessed it, I blinked again and all of a sudden I’m settled down, in a long term relationship, paying my mortgage and trying to figure out how my kid is 6 already.  So it’s about to be 2014, and I’m stuck in like 2009.  W.T.F.

So New Years.  It’s the time of year where people make silly ass “resolutions”, (usually) unattainable goals that they set for themselves that will be abandoned after the first week of January.  I’m guilty of it in years past, I’ll admit that, but it seems like as the years go on, the more I wince in regards to New Years Resolutions.

Now that’s not saying that there aren’t things I’d like to improve with myself, within my life.  I just lost major interest in setting all my goals to begin on the 1st day of the year.  The main reason?  I learned that if you set too many, or a goal that is insanely too high for yourself, it’s so easy to abandon it.  I mean, why not?  I wanted to lose 41 lbs!  I can just start that later… I don’t need to quit smoking, I can start that neeeeext week.  You have the entire year, so why not put it off?  So if there is something I want to change, I start to change it right away, otherwise I’ll just put it off.

A lot has changed these last few years.  I accomplished a lot of the goals I set out for myself.  The one goal, or I guess resolution that I’m working on is *better health*.  I’ve been at it for a couple of months now, at least seriously anyway.  Trying to eat more whole foods and less processed crap.  More exercise, cut down/quit smoking, yada yada yada.  That’s about it for this year.  Health.  This January my health insurance through work kicks in ( I can finally afford it – and not get denied ), so I will be able to see my regular doctor, gyn, and GI when I need too.  Eye Exams and finally getting to the dental work I’ve put off will be getting done too.  This year, just like these last few months, is dedicated to taking care of myself, more importantly setting a good example for my daughter.

Whatever.  I’m going to go pour myself a glass of red wine then start dinner.  These steaks won’t grill themselves.  Happy New Years everyone, take it a little easier on yourselves this year and make sure you aren’t losing too much time making yourselves miserable.  Good night!

 

Living with Crohns Disease – Intestines for Sale

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I think one of the biggest things I hate about living with Crohns is the future.  When you have a chronic illness, sometimes it can flare up, for no fucking reason and kick your ass (figuratively and literally).  I hate not-knowing.  Especially lately.  When I was in a full-flare, not-knowing wasn’t bad.  The only thing I couldn’t predict was feeling better.  So when I had a random day, out of the norm, it was fabulous.  Now though, I’m practically in remission.  The normal symptoms of my disease are practically non-existent, except for the fistula.

Yes, I still have it.  It connects a loop of my intestine to my bladder and it makes for  a bad day.  I was planning on surgery but a multitude of things made the decision for me to put it off.  (And unfortunately followers, this decision is not up for debate.)  So basically as the decision goes, I am trying to stay as healthy as possible for as long as possible until I have to have surgery.  It’s a horrible plan, but at that point in time it was either choose to have the surgery and fuck everything else up, or put it off so life is more stable for a major surgery.

Anyway, on with my rambling.  So for the past few days, after months of being symptom free, I haven’t been feeling too well.  Fistula symptoms, upset stomach, diarrhea and nausea.  I’ve been taking it easy, sticking to teas and easy to digest foods instead of my coffee and grease.  Doesn’t seem to be too much change, but I’m still wary.  Having had two obstructions in the past, anytime symptoms mimic the early signs of obstruction I get worried.  So I’m taking it easy and hoping for the best yet still preparing for the dash to the hospital just in case.

Sometimes Crohns Disease seems to suck the life right out of me and not in the way you’d think.  On my bad days, I still strive to do everything I normally would do as well as things I want to do.  It’s the mental aspect that is different.  It turns my normally hectic mind into something more anxious and scary, almost more chaotic and full of worry.  I don’t want to end up sick, I hate being in the hospital, but at the same time, I long for all of this to be over with.

Normalcy.  It’s something I strive to have, but Crohns Disease messes it up.

Missing in Action: One GI Joe – One Uncomfortable Surgeon

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Everyone knows I’m a horrible patient.  I’ve chased away more GI doctors, surgeons and doctor’s assistants than I can count.  My step-ma says it’s typical for a Crohns patient, that most doctors know we all almost have a personality disorder, but alas.  I just dislike doctors and hospitals.

It’s a damn shame that I have to spend so much time in them.

After the last bowel obstruction, my GI finally managed to convince me to have surgery.  It only took 5 years and 2 obstructions, I should give him an award.  Unfortunately for the rest of the hospital and to the delight of my step ma (a doctor there) I chased away the surgeon that was assigned to me while I was admitted.  Then signed out AMA.  Like usual.

However, I did finally go in for my surgical consult.  Step-ma found me a surgeon that according to her and my GI (the only doctor I haven’t chased away.. not for lack of trying) that I will “mesh with”… ie: not destroy.  He seems alright, however it made my day when I managed to make him uncomfortable.  After he described the surgery I said “You know um, hey.  I kinda lost this gi joe figurine like 3 years ago… when you’re like all… in my intestines and what not… and if you find him… please bring him back.  I miss him.”  It was like I kicked his puppy.  Or first born child.  Either way after a good 20 second blank stare and a blush, he laughed.  Which means he’s okay in my book.  So far.

So here’s the deal.  Crohns has destroyed at least a 2 ft section of my small intestine.  For some reason, even though the disease has jumped around quite a bit over the years, it’s always hit this section the worst.  Said section developed a fistula that attached itself to my bladder.  So what I need done is a resection, I’ll lose those two feet and possibly a small portion of my colon, and they’ll remove the fistula and repair my bladder.  Yeah.  I’m 26 years old and I’m having bladder reconstructive surgery.  Oh joy.

Since I no longer have an obstruction, just swelling, it becomes an elective surgery.  The surgeon wants it before the year ends, and I want it before the holidays.  Nothing like major surgery before Christmas.  So I’m aiming for the beginning of December.  I’ll be out of work for at least a week, most likely two, but after that, with any lucky, my Crohns will be in remission for a long time.  Complete remission.  Something I haven’t even had thanks to this damned fistula.

Am I happy about surgery?  Hell no!  It’s something I’ve literally been avoiding for 5 years.  It took major convincing to get me to go on Remicade, even Humira.  Whenever surgery was brought up I just walked out of the office/checked myself out of the hospital.  However, after 5 years of this, I’m tired.  I’m tired of the constant pain, the stomach issues, the 3 year long UTI.  I’m tired of hospitalizations every other month and steroids.  I’m tired of being sick.  Surgery gives me the chance to be healthy, at least for a little while.  So even though I’m terrified, I’m going to hop in the saddle and go for it.

You fuckers better come visit me in the hospital.