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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Strawberry Ale

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Saturday night, day one of a much needed three day weekend.  Monday, I am off work… initially it was out of necessity.  It’s Columbus Day (aka: lets-celebrate-genocide-day), so the kid doesn’t have school… and on the major school holidays, daycare is closed.  So I requested the day off, because being myself, I don’t have many other options for childcare.

Either way, as the days counted down to this weekend, work got more and more stressful.  Each day that inched by, the more depressed I got.  The more anxious, the more upset.  It’s just been… hellish, especially after working late nights for god knows how long.  Friday, I lost it.  I finally found out what burnt out feels like, I thought I had experienced it before, but quite honestly I hadn’t.  Every little thing was setting me off into tears, I felt like I was on the borderline of an anxiety attack all day.  (Hello, new prescription.)  It was one of those days where I had to go outside, and solidly convince myself that deep down I *do* like my job, and that while my paycheck is no longer 100% needed, I like having that income.

It was bound to happen.  I knew it was coming, and quite frankly, I’m surprised it came with tears instead of screaming and storming out.  Friday straight up blew.  However though, when I’m stressed I tend to say what I mean, instead of sugar coating it, so I got some of my thoughts off my chest.  Despite the tears, at the end of the day, I actually felt better.  On the drive home, I thought about what I wanted out of life, out of work and out of my home.  I put some priorities in order, and let me just tell you this: my family comes first.  Hearing my boyfriends views on it, and knowing I have his support regardless of what I do with work helps.

Cue: Weight off my shoulders.

So, this weekend, I’m taking for my family.  This Monday is a Noodle+Me day.  I’m enjoying every minute of it.  I know that I have some work I really should get to, especially with corporate coming in next week.  This weekend though?  I’m not doing it.  I’m not checking emails, faxes, lates or anything.  I need this, and I need time.

Today wasn’t quite fun filled with the morning dentist appointment, but watching scary movies with the short one this afternoon was nice.  Right now, I’m relaxing with a Strawberry Ale (mighty tasty I might add) and writing.. while fending off complaints from the child that she lost her charger for her tablet.  Tomorrow?  I don’t know what’s going on, but I know I’m spending my morning in bed until I feel ready to get up… and the day?  Relaxing.  Monday?  I think a bike ride with the kid, and lunch out.

Moral of the last week (year)… family and self comes first.

Chasing it down.

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I feel like I lost something along the way, like it fell out of my pocket while I was walking down the street one day.  It feels like I lost it at home, in the morning rush, while I was trying to get my child off to school so I could head to work.  I feel like I lost it at the office, in between the screaming customers and cranky coworkers.  I feel like I lost it while trying to balance the work I’ve brought home, with the work I already had set up for me there.

My creativity is missing, have you seen it?  My fingers used to itch with ideas to put on paper, with stories streaming through my head.  I used to have to STOP what I was doing, multiple times through out the day, just to write an idea down.  I could sit down with my cup of coffee and write and write, whether it was with my journal and pen or computer.

Somewhere this past year, I lost it.  That doesn’t mean that I haven’t occasionally sat down by the computer, grabbed my notebooks, and… tried.  It just doesn’t come.  If I sit there long enough, the only feelings, the only things that come is stress from the job, and the feeling of failing at home (the result of working long hours and bringing work home with me).

My fingers don’t itch, my journal is sparsely filled with meaningless entries, and my blog is stagnant.  Don’t even get me started on my drawings or my knitting.  Lately, it feels like there is nothing left in my brain but stress.  There’s this underlying wave of anxiety lately, if I give myself a moment, it threatens to drown me.  I get up in the morning, get my kiddo to school, work 9 hours (often without a lunch, which was a big journal writing time for me), get the kid from school and head home with another 2-4 hours of work.  I manage to fix dinner, throw in some activities for the family on the weekend, and bam!  The end of the day is there, I head to my room to conjure up something to put through my pen and just end up with the same anxiety.  Unfortunately you can only write so much about one topic before you start pissing yourself off.  (Yes, that was a full admission that *all* writing I do is for myself.)

Things seem to be slowly calming down at work, I’m slowly (read: the difference is in literal minutes) working less at home.  I’m slowly starting to feel the real draw back to my ideas, but now it’s pushed by the irritation, the HATRED of how I’ve sold my mind short.  I think of all that I could put through my pen, I think of all the time I could spend with my daughter (my true muse) instead of hovering over my paperwork, and then stressing over everything else.  I think of how much I just want to STOP.

I think of how much I just want to walk away.  How much I want to just say “screw your fucking (insert inane purchase at any retail/CS job I’ve worked), I’m done.” and go home and write.  How much I want to listen to my daughter’s make believe stories and spin whole tales about each character… for the pure point of telling a great bedtime story.  I think about the years I’ll spend working, and if they’ll be limited by my disease, I think about whether or not I’m spending what limited working years I have working in a stressful environment.  If I’m sacrificing my “healthy years” (those of you who personally know me, just started laughing) slaving away behind work orders and phones instead of with my family and my art.  I start wondering what’s worth it, and what’s not.  I start wondering what I really want, and what just gets me by.

Then.  THEN.  I think about how much I enjoy my industry (even if I don’t enjoy my job anymore).  I think about the great example I’m setting for my daughter about work ethic when I show up to work every day, even when other’s would call off.  I think about my co-workers, who sometimes drive me up a wall, but whom I consider my friends.  I think about the joy I find when doing my job correctly, and getting out and finishing at 5.  I think about how much easier things are with my extra paycheck (yes, I’m *finally* not the breadwinner in my family), and how much quicker I can accomplish my material goals.  I think about how much easier it is to get yelled at by a customer then it is to try and crank out material and get published.

I ran away this weekend, my daughter and I came up north, to a part of wisconsin I’d like to live eventually.  My parents will eventually retire here, and this is one of the only places I feel like I’m able to let my mind wander.  After work on friday, I packed the car and we drove up here in the dark.  I needed a weekend away to clear my head, despite planning to come up here much more this year, I haven’t made it.    So this weekend it is.

Last night, while laying in bed, I realized that something has to change.  Now I’m not saying I am going to up and quit my job (despite the rallying cries to do so), but something… anything has to change.  I need to learn how to say no, how to go home at a reasonable time and instead of working at my own desk, how to walk away from my to-do list and pay attention to myself and to my family.  I need to learn to let my words and emotions flow through my fingers like they used to.  I need to stop fearing that I’ll offend someone with my writing, that I’ll upset someone at the office or in my personal life.  I need to stop censoring my thoughts and written word and maybe… just maybe my creativity will come back.  I need to learn balance, how to do the job I (used to) love (and learn to love it again), and how to nurture my family and my own pleasures.

Last night, and today, I’ve realized what I want and it’s not the feeling I get out of the way things are now.  I have to make a change, and I’m the only one who can do it.  It’s my life and I’m the one leading it… I need to get my priorities in order and enjoy it.

Life is a lot shorter than we’ve been lead to believe.

Depression: This and That

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It’s been a long couple of weeks, it really has been.  It seems like it’s all come crashing down on my shoulders today, I’m not sure why today, but here I am.  I am in a deep funk.  I’ve been telling myself for the past few days that I just need to make it to Friday.  Friday, the beginning of the weekend… I was sure that when I walked out of work tonight, I’d feel much better (at least mood wise anyway).  Well, that was a lie.  Maybe it has to do with all the stress from work over the past couple of (hell) weeks, maybe it was the crushing realization that I’m going to have to work tomorrow morning anyway.  Either way, getting in my car after work and heading to pick up the short one from camp, I had the sudden urge just to bawl.

I’m not talking about a couple of cute, mascara streaked tears running down my face.  I felt like I wanted to scream and rail against the world, like if I went all crazy girl in my car, I’d feel all better and the world would keep turning.  Well, unfortunately for my head, I didn’t.  I drove to pick up the short one, no tears in sight, and diligently turned in the check for her childcare.  I packed her up in the car and stopped for a quick treat at the 7-eleven (Friday tradition anyone?) and headed home.  I sat out in the backyard writing, watching my child run around with her “peg leg” (a walking stick the boyfriend made her, which magically morphs into whatever play thing she wants at the moment.  Thank god for imagination!), smacking random things that she deemed a monster.  I sat there and smiled.  The boyfriend came home, we talked about our days while I drank my iced coffee.  You know what?  I still want to bawl.

I know a big portion of it is just the prednisone prescription.  I have mild depression and anxiety normally, but for some reason the prednisone really brings it out.  It’s pretty common from what I understand if you’re on it long term, and I dealt with it before so I knew it was coming.  A big portion of this funk is because I feel like crap.  My Crohns is far from controlled right now, and the physical side effects from prednisone are popping up.  Along with the stomach cramping and my “normal” fatigue, I have joint pain, what I call “skin pain” and I feel like I haven’t slept.  I’m not even going to talk about the “moon face” I’m rocking now.  It was confirmed by a coworker yesterday.  As anyone with a chronic illness knows, (especially someone in a flare or with consistently active disease) after a while, the pain and discomfort just wear you down.

For whatever reason, work has just been hell lately.  I mean, it’s enough to wear my healthy counter parts down, and dealing with it on top of pain and fatigue is just ruining whatever small happy moods I do have with a quickness.  Usually I can deal with work stress pretty well, but with already being at the mental-crying-like-a-grounded-teenager point due to pain… it takes very little to set me over the edge.  Thankfully my co-workers are understanding (to a point), but shit man, I’d rather not have to run outside to get my emotions under control.  Crying at work is not fun for anyone, and when I cry, I make it all awkward for all who witness it.

There’s a lot going on in my personal life.  Some financial stuff, ranging from the new hospital bills, to the increased summer tuition for childcare (no child support here remember), to trying to stay afloat with no extra income coming in to make up for the gap.  Along with finances comes the regular stuff.  I have to turn in supplies for summer camp and register the kid for 2nd grade (I already missed the deadline… thank god pretty much everyone does.) and the boyfriends kids money stuffs too.  It’s just a lot, and while doable, is very overwhelming when I’m already not at the top of my game.  Then of course just every day stuff, you know, keeping up with chores (thank god for the helpful boyfriend) and the garden and getting repairs on my car completed.  I about cried when I realized I have to do laundry this weekend.  That’s how stressed out I am.

I know a lot of it is prednisone related because I *know* that most of this stuff doesn’t bother me on a normal day.  Which having that thought just irritates me even more!  I am so incredibly overwhelmed I want to just make some coffee and pour my head out to someone, but I’m feeling quite alone at the moment.  The boyfriend has to listen to me rant and rave everyday, so I don’t want to unload on him anymore than I already do.  My parents have a lot to deal with the other children, so I don’t want to unload on them either.  They are super stressed out, why add to it and then add guilt to my list of woe-is-me’s.  I don’t have a whole lot of friends who do the coffee date anymore, and the ones who do (which I love dearly) are too far to do in-person-coffee dates.  (Luckily I have one via phone tomorrow).  Regardless, between putting on the happy-fun-lets-do-a-bunch-of-fun-stuff mom face and the lack of people to talk to… it’s hard to get my brain out of this funk.

 

I don’t know.  I have to work tomorrow, then the kid and I are out to roam around for some one on one time.  I’m hoping that that and the good weather will cheer me up.  In the mean time?  Whiskey and cokes on my porch after the kiddo falls asleep.  I’ll count not having to watch frozen again as a victory and count my blessings.

 

Happy night all.  Hope your moods are better than mine.

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.

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.  

 

Hidden

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Having a hidden illness…. it sucks man. No one can see it and a lot of us suffer in silence.  The chronic part takes it to an extreme level.  In 5 more months, I will be going on my 7th year with Crohns Disease.  7 years is a long time, pretty much a couple of months after my diagnosis I felt like I shouldn’t be complaining anymore.  After I started treatment, I started gaining weight and no longer looked the “sick” part.  7 years is a long time to feel sick, long time to complain, so I just shut up.  It becomes tiring to explain over and over again that even though you can’t see what’s wrong, that I do in fact have a horrible disease.  The really shitty part? (Pun intended) This stupid disease will be with me for the rest of my years.

It is hard to voice pain with all of that.  The “you look fine” and the “oh its just a stomach ache” really beats you down after a while.  You just… keep quiet.

I’m really down as of the past few days. A good portion of that is due to my disease.  It’s almost Remicade time, and my symptoms are pretty bad.  On top of pain that makes it hard to walk, my joint pain has spread from my knees and hips to my shoulders.  The fatigue is extreme this time around and eating is again my enemy.  I know that (knock on wood) I will improve a bit after infusion, but it is getting old. 

What can I do?  Call off work?  I’m most definitely sick enough, but if I called off every time I wanted to cry due to pain…. I’d be unemployed.  Do I mope?  I try really hard not too.  Everyone tells me I’m a strong person, and besides, this is my life now.  Do I complain?  7 years is a long time, people get tired of listening to something they can’t understand. 

It’s just difficult sometimes is all..  I am frustrated and depressed.  I’m just tired.