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?

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Home Sweet Home – Where you do your own laundry

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Woke up before 7am this morning, which is honestly sleeping in a bit for me.  Immediately noticed that the dog (who smells like butt) had been sleeping on my favorite blanket all night.  While I was groggily throwing the blanket into my washing machine, I realized… at least at the hospital I don’t have to change bed clothes or wash their gowns.  Laundry is for the birds man.

I am home, I was discharged late Friday.  I came home and promptly fell asleep on my couch curled up with my own blanket, pillow and my kid.  It feels good to be home.  I’m feeling a good deal better (if Prednisone is good for nothing else…) and am enjoying being outside of that small little hospital room.  I have about 6 new prescriptions, which I am doing my best not to forget, and I have to make an appointment with my GI’s office to go in to discuss Cimzia and my insurance.  For now though?  I’m just enjoying being home.

There’s something disheartening about being stuck in a hospital room.  Especially when you reach the point that you *know* that all the meds coming through your IV come in pill form and your off of pain medication.  I’m not a fan of vitals at 3am nor am I a fan of a newly graduated dietitian telling me how to eat, when I’ve been doing this for 7 years next month.  Don’t get me wrong, everyone I came in contact with was very sweet, it just gets to me when I start feeling better and I have to reign in my tongue a bit to make sure I don’t smart off.  When I’m doing the “Oh my god what’s wrong with me now” thing, that’s one thing, but other than that?  I want to go home.  At least no one charges me anything to go home and not eat and sleep on my own couch.

See, there I go again.  Haha.

Anyway, I have some things to do and a breakfast to figure out.  I hope everyone is having a great weekend!

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.