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.

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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.  

 

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.

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.

Home sweet home. Now where is my sleep?I

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I am home.  I am glad to be home but I feel completely exhausted.  I got around 6 hours of sleep last night, almost interrupted and it feels like I haven’t slept since yesterday.  I was hoping that I had an appetite this morning, but nothing.  I thought about making some oatmeal or something easy to digest and just dealing with it… but the wave of nausea that came after that thought changed my mind.  I’ll try again later on and hopefully manage something so I can get some energy.  At lea st I know the obstruction is still clear though, I can keep down liquids and no pain directly from them.

I’m glad to be out of the hospital though, I was discharged yesterday afternoon after meeting with my surgeons and my GI.  Surgery is a no go for now, both surgeons feel like if I can continue to keep a handle on my disease barring a hospitalization here and there to help with a minor obstruction, that it’s not necessary to slice and dice now.  My GI (reluctantly) agreed and he and I discussed new medications and altering my normal ones.  The conversation wasn’t the most enjoyable, but it needed to be had, which I knew even before this last obstruction.

So since there is a new area of inflammation and the regular area doesn’t seem to be improving anymore, it looks like Remicade (my infusion I get every 8 weeks) is starting to not work.  Both of the GIs think that my body is building antibodies to the medication, just like it did for Humira.  So we added Entocort back to my med list, mostly because Prednisone had so many nasty effects for me and had started to do some damage, I didn’t seem to have such a hard time with Entocort.  In addition to that, I’ll also start taking 6mp again.  I’m not thrilled about that, mostly because again, side effects as well as the higher risk of Lymphoma (in additional to the small risk that Remicade carries).  That and the weekly blood draws to monitor me.  Ugh.  I’m not pleased but honestly Remicade had been working great (short of the fistula) and we don’t want to let that go.  The goal is to use Remicade as long as possible and to use the Entocort to bump me as close to “remission” as possible.  Then, eventually, when I absolutely need it, I’ll have a resection.

So I guess let’s hope for the best, and in the meantime, I’m going to go lay back down.  Crohns sucks.

Day 2 – It’s 5am – Get out of my room

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Yup, I’m still here, I was roaming around outside of my hospital room today though.  Always nice, I even ran into a couple of my nurses from the previous stays.  I don’t know whether or not to be flattered that I was remembered or not, but oh well.

Things are going alright, the aides and nurses left me alone most of last night so I got almost a full night of sleep (with out pain medication!!) and am feeling much better.  The powers that be let me have some clear liquids yesterday, which trust me, I really appreciated.  The aide that brought me my tea laughed and said I was the happiest patient in the hospital.  Haha, what can I say, I’m easily pleased.

I have been up for quite a bit though, it seems like all the people who didn’t stop by overnight decided to come in at the same time this morning… 5am.  I had a Surgical PA, two aides, my Nurse, and of course someone had to come in and draw my blood.  I shit you not, everyone was in here with in 10 minutes.  I had had grand dreams of sleeping until after the sun came up, but… nope.  After the blood draw I just gave up and ordered a tea.

One of the two surgeons I am seeing stopped in, I happen to like him despite is poor bedside manner.  He is very straight forward and very easily agitated.  He’s not sure what the plan is for me, he thinks I should try eating soon and we can go from there.  However he agreed that someone should have stopped in and gave me an update last night.  So he’s off to check with the other surgeon and my GI to see what’s going on.  *Shrugs* I’m just happy I have one pro-active doctor, usually they avoid me… which I give them good reason to. :)

So as for my Crohns Disease goes, we knew I had a patch of inflammation and a fistula that runs from my bladder to my intestine.  I am getting Remicade infusions every 8 weeks and have been working to control the other symptoms of my disease through diet and exercise.  I did very well, had very little symptoms for almost a year (minus the symptoms from the fistula), I was >< this close to remission.  I had a bad time with the fistula once (when I was a bit late for a Remicade appt), and then just recently I started “flaring” again.  I put quotations around “flaring” because honestly, beyond the obstructions and the fistula (the cause of the obstructions) I haven’t had what I call – normal symptoms – of a flare since I began Remicade almost 3 years ago.  Out of nowhere, a handful of weeks again I started running to the bathroom multiple times a day.  The stomach pains came back and the fatigue worsened, and I got nervous.  I made an appointment with my GI, but before the appointment came I had my Remicade infusion and the flare went away.  My appointment went well, and I went back to normal life.  A couple of weeks after that the flare came back… and an obstruction.

When I got here I had an x-ray and a cat-scan done, and while they did show an obstruction, it also showed another patch of inflammation.  My disease managed to spread to another part of my intestines.  My GI brought up that it’s possible that either A. the dose of Remicade is now too small, or B. my body has built antibodies against it, just like it did with Humira.  So I need to talk to him about solutions to that, either adding meds or changing meds, I haven’t burnt through all the biologics yet but there isn’t many left that he thinks will work.  He mentioned 6mp again, but I had too many side effects and steroids made me nuts.  So we’ll see.  Blah.  I think that’s the part that gets me down the most.  In the 7 years I’ve been sick, 6 years diagnosed, I haven’t gone into a full remission yet, and it’s disheartening that I still might not get that chance.

Ugh, I don’t know.  The good part?  My favorite nurse just started shift, she’s back out there hunting down information and doctors for me.  (she was the one who convinced everyone to let me have tea) So wish me luck!