Giving up, or living with…?

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When you have a chronic illness, there are many stages you go through leading to acceptance. I know when I was first diagnosed, I was almost insane with happiness because I finally had an answer. There was finally a reason for all the sickness, all the weight loss, all the pain! I took my first type of medication with glee at the thought of getting better. From there, as I cycled through “remission” and “flares”, my attitude towards Crohns Disease changed many times.

A lot of the time, I took on a headstrong approach. I knew Crohns could very well put my butt in the hospital, but I was going to do what I wanted anyway. It was a take-charge-attitude. Nothing was going to get me down.

The other end of that spectrum, is more of a… careful approach. It took me years to get into this little “phase”. I spent so much time feeling almost invincible, pushing myself farther and farther, when in reality what my body needed was rest. These last few years I developed a stricture around my terminal ileum, which led to bowel obstruction after bowel obstruction. At first it was once a year, then twice a year, then all of a sudden, I was being admitted every other month. Which of course is what led to my surgery.

In the months leading up to my surgery, I started realizing that pushing my body so hard the previous years definitely took a toll. Now I’m not saying that you shouldn’t do what you want to do in life, just because of a chronic illness. However, you have to listen to your body and rest when you need to. There were many, many a time where I went with little sleep, or didn’t take a day to myself after a big event or trip. I didn’t pay as close attention to what I was eating as I should have, and I didn’t take care of myself.

The downfall of getting so sick, and thinking about all of the ways I hadn’t taken care of myself, is that I’ve more or less become a homebody. Don’t get me wrong, I’ve always enjoyed the quiet of my home, but I’ve retreated more of the last couple of years. I’m more often than not going to avoid places without easy bathroom access (which is pretty par for the course with anyone with active IBD), and after 2 years shy of a decade, the fatigue is so overwhelming that I get anxious about going to anything resembling an all day festival. By all means, I still *want* to go to festivals, markets, concerts and such.. but it’s almost like after years of “conditioning” it’s all to easy to just say no. It’s easy to just stay at home, where I can hurt in the comfort of my own bed, use my own bathroom, and have easy access to my medications.

Someone told me recently, that I had lost that “fight” I used to have, that it seemed like I had given up. When I heard that, to be completely honest, it broke my heart. I’ve been through a lot this past decade, not even just health related. The last thing I think when I look in the mirror at the bags under my eyes, the scars on my tummy, is that I’m looking at someone who has quit. When I look at myself in the mirror, I see someone who has fought the mother of all battles. I see someone who has been through hell and back, and has still managed to stand up every morning and face the day. I don’t think I’ve given up, I think I’ve just acclimated.

Sure, I need to work at my confidence, to get myself back out there. This time however, I will be taking care of myself, taking the down time I need, taking time for myself. I do want to get back out and “live life” instead of letting life pass me by, but I will do it on my own terms. I haven’t lost the fight, that fight that was so very much directed at not losing the life that healthy people lead, damn near destroyed the life I already had. The fight that I supposedly lost, isn’t missing, it’s just been redirected into getting well.  It’s been redirected into saving myself. Now I just need to learn to shift some of it back to other aspects of my life.

By no means though, have I given up. I just learned to live how I needed to, to get by, not just keeping myself out of the hospital, but keeping myself sane. Unfortunately, it’ll take a little while to learn how to shift from this stage to something more in the middle. It’s going to take time to learn how to live fully, while protecting what health I have.

I have not given up, I’ve just learned to fight in every way imaginable.

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Home Home Sweet Home

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I am home. My heart rate and pain stabilized this morning and all the doctors agreed I could do the rest of my healing at home.

I am so happy to just be with my family and to snuggle in my own bed it’s amazing. I don’t think I’ve ever given the short kid and boyfriend so many hugs in such rapid succession. I missed the short kid most of all, and she missed me too despite getting the hell spoiled out of her by her favorite daycare teacher and grandpa.

I’m so glad I’m home. I’ve got a handful of appointments to schedule and have to work out something with her daycare for while I’m off (that way she won’t lose her spot in summer camp) but it’ll all work out.

Happy healing!

Have a Personality : How to get a Rebellious Patient to Like You

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I am a huge pain in the ass when it comes to being a patient.  I am a control freak, so naturally, having a chronic illness takes away some of that control, add in the doctors who seem like they are just dictating the remaining happiness in my life… and there’s me.  I’m that patient that the nurses adore and the doctor’s loathe.

In order to get the feeling like I have some sort of control over everything, I have a habit of researching each and every drug I take or procedure I have.  I don’t take medications that I don’t deem safe, or I don’t want to (unless my life depends on it), and I most certainly don’t undergo procedures if a second (third, fourth or whatever) opinion deems it not yet needed.

I’m that patient that the nurses remember because I argue the shit out of anything I don’t agree with, or straight up refuse if I haven’t researched it.  I’m the one who you can usually find the nurses and aides stopping in to say hi, and tell stories about things I’ve done, doctor’s I’ve pissed off, or “remember that one time you went AMA and threatened to sneak down the stairs??”.

My first GI doctor was legitimately a bitch though.  She really was.  Her name started with a W, so she was immediately re-named Dr. Wench.  After having peri-anal surgery, she decided that I had Celiac Disease when I first started getting sick.  8 months, 80lbs, and almost dying- later, I had started ER-hopping because whenever I called Dr. Wench, I was told “You must have some gluten somewhere in your diet, otherwise you wouldn’t be sick”.  By chance, in the ER of my now “home-hospital” I ended up with my last GI doctor.  Boom, Crohns Disease.

That first doctor did a number on me, because of her (lack of care) lack of research and refusal to listen to my symptoms, I missed the first year of my daughter’s life.  From there on out, I treated each doctor the same.  They were the enemy, they weren’t looking out for my best interest (which admittedly, some don’t), and there you have it… I became *that* patient.

I was a horrible patient with my last GI, whom I periodically graced with my presence through out almost 7 years.  He was great, by the end of our “relationship” he would even give me drugs to research and listen to me if I refused drugs (even if he didn’t agree).  I ended up switching to Entyvio, so with his lack of knowledge of it (it’s a spanking new drug people), I switched to his counterpart.  He was free of me, and I was nervously awaiting meeting my new GI.

At this moment in time, I’m writing from my hospital bed.  I’ll put up another post about the why’s later on, but yesterday and today, with some interaction with my doctors and a surgeon who’s minions know me by face, name and cat scan, made me have that “Eureka!” moment.  I finally figured out what makes me like a doctor (and why I’ve liked 90% of my nurses), what that little bit of something I’m always looking for is.

Show Your Personality!

Once I met my GI, I instantly warmed to him.  He listened, he laughed at my half-assed “You don’t know what you signed up for Doc, I’m not a good patient” comments, and he took the time to listen.  Score one for GI.  I had only seen him once in office, but was much more content already, so when I had to come in to the ER this time around, I was VERY comfortable talking to him and telling him everything I felt, both physically as well as my fears as to what my disease was doing and to what meds I would end up on.  He listened, re-assured, and promised to come back the next day.

Well, when he came in yesterday, I was pain killer free, and he had asked me about something I said the day before when I was all full of dilaudid.  I cracked some joke about not having any clue, and painkillers being my friend through puke-fest 2015.  Without blinking he cracked a smile and made fun of me for being all doped up when he came in.  I laughed, the boyfriend laughed, and he laughed.  We finished our chat/game plan, and I settled in for the night with that feeling that I was about to realize something… but couldn’t put my finger on it.

The surgeon (who I’m just going to refer to as “my surgeon”, because he’s been bugging me for a year or so now, so we all know he’ll be the one cutting parts out of my innards) came in today, again, he’s usually in my little hospital room every day I’m here… ever… with everyone of his PAs rushing to catch up.  I think he’s caught himself a cold or something, but regardless, he came in, admitted he had a long day, and literally flopped down in the “guest chair” with one leg over the arm rest.  For the first time since I was introduced to him, I had an honest to god conversation with the man, (and his little minions) and we came to an agreement about surgery (again, another blog).

As he left, that Eureka! moment hit and I finally realized why all of a sudden I wasn’t being such a pain in the ass.  After years of fighting every step of the way, all of a sudden I was agreeable to their recommendations (I still researched them though) and I actually enjoyed my conversations with them… I felt comforted by their opinions and recommendations instead of wary.  Both of my main doctors (now), my GI and my Surgeon, managed to show some personality to me.  Granted, one was because I think he was so physically exhausted he couldn’t stand up much longer, but still.  I got to see that they were people.  They were people, just like me.  People who get tired and just want to sit, people who can’t resist a “you’re high” joke or even better “like a good little patient” joke (I’ve never seen a nurse have to gag to hold back laughter before) (also 20+ points for getting that one out, that was 7 years in the making). I finally have doctors who inform me of my options, give their recommendations but let me have a bit of control with what happens with my life.

I think with nurses, they have always been trained to play a comforting, almost maternal/paternal role – if not a friend-like role, and by stepping into those tall boots, they naturally let a little bit more of their personalities flow out.  Which would explain why I haven’t had too many issues with nurses over the years.  It just feels good to have doctors that I feel like I can email with concerns or questions and know they’ll answer.  Look at that people, all it took was a little humor and a long day to make me actually like my docs again.

I’m sure there will be road bumps, as I’m still not a like-able person on most days, but hey, I’m finally getting somewhere.

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.

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.

Rainy Day

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I do have something positive about this hospital stay. It’s crappy outside! Yes! For once I’m not missing beautiful weather. It makes me a tiny bit less anxious to get out of here.

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So I’m feeling a bit better today. I still have pain in my belly, but not enough to where I want the heavy painkillers. I’m able to walk around with out bending myself in half due to pain.

I can tell that I’m still not “healthy”, but I am most definitely happy to see some kind of improvement. I’m really hoping they will release me over the weekend. Fingers crossed anyway.