Chronic Illness Can Go Kick Rocks

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Today was a rough day, as they all have been for a couple of weeks now. My Crohns Disease seems to have left the Remission parking space it had occupied for almost a year.

Don’t get me wrong, I had a few “mini-flares” but nothing longer than just a couple of days. This weekend though, it progressively got worse and today I called one of my doctors. I was lucky to get in to get some IV fluids, potassium and steroids, and I’m hoping that will kick me back into remission. We shall see I guess.

It’s like my body just wanted to remind me that my Crohns is still around, I’ve been dealing primarily with my heart crap, I almost forgot about IBD. So there I was, getting back to normal life, and my intestines nope-ed right the hell out of normalcy.

Ah well, everything else in my life is going pretty nicely. If anything, I’ll just use this as an opportunity to appreciate what and who I do have in my little world. Nothing like a shot of reality to help out with that.

Here’s to another 30 years pushing forward! Happy Birthday to me! Last day of 29 will be spent reflecting. :)

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Caffeine Fueled Honesty

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Rebuilding self-esteem. It’s like running up hill, underwater, drunk, and if you’re unlucky, naked and with a target painted on your back. Once someone tears you down, it’s ever so hard to get back on the same playing field.. or anywhere even remotely near it. It’s like trying to quit smoking by snapping a rubber band on your wrist.

Before you realize what happened, you’re hiding bits and pieces of yourself that you’ve been taught are damaged, or annoying even. You’ll apologize for things that don’t need apologizing for. You’ll keep thoughts to yourself, because you’re so scared, almost terrified in fact, that if you let those thoughts out, you’ll scare people away.

All that’s left is this shell of a person, feeling frustrated, down, depressed, and hurt. It’s just this shell that dislikes so, so many things about itself, that it desperately wishes it could change. It wishes it could change it’s hair, it’s weight, it’s health, it’s mannerisms. It wishes it were different. Just a shell.

 

 

 

Over the last handful of years, I’ve had a hard time with myself. I “learned” that things that people once loved, were actually obnoxious, annoying and embarrassing. I had been told that I was too loud, that I should stop debating, stop arguing, and “not get so riled up about political issues”. I had it forced in my brain, that taking a down day (during a flare, or even an every day cold) was selfish. That laying on the couch was lazy, even as my insides spilled onto the floor. After a while, my brain believed it.

I embarrassed my friends and family when I became passionate about something. I picked on people too much, it was okay for people to pick on me, but fighting back was wrong. No one likes a girl who stands up for herself. That when I was sick, I inconvenienced others. That I shouldn’t complain, I should just deal with it, because it wasn’t as bad as I made it out to be. I learned that I made people miserable, especially on days when I couldn’t drag myself off of the couch. That I ruined my friends and family’s weekends when I didn’t want to something my body wouldn’t tolerate.

 

Time went on. I started to keep quiet. I stopped debating, I stopped arguing, I stopped discussing world events. I kept my opinions about my books, and the world around me inside my head, more and more. I withdrew. Things that I was once known for, quirks, even character flaws if you will, I started to apologize for. If I got sick, I was sorry. I was sorry for everyone who had to deal with me. If I got loud about something I cared about, I apologized and immediately felt embarrassment flush across my cheeks. I stopped teasing the people I cared about, I stopped showing my personality at home and out with friends. Oddly enough, the only people who really saw the real me, was my co-workers. I hid from everyone else. I even started hiding from myself, picking myself apart. Disliking who I had always been. I looked in the mirror and felt ashamed at not only my changed body from all of the medicines and years of disease, but I didn’t like myself anymore.

Complete honesty here folks, which I’ll admit I haven’t let on my blog for a long time. Just remembering how I used to feel.. I’m sitting here with tears streaming down my face.

I felt like a shell of a human being.

 

 

Then all of a sudden, I was alone. It was just me and my beautiful daughter. My daughter who looked up to me, my daughter who has the same mannerisms, and one hell of a similar personality. If I disliked myself, did I dislike her? What was I teaching her.

One day I was out with my friends, and I made some horrible joke and someone I didn’t even know laughed. I opened up a little bit more. I started to meet people for coffee and drinks, people I’ve known for years and years, and new people. People who liked my quirks, as well as my friends in the chronic illness community. I started to realize that maybe, just maybe, the old me is in there somewhere. Maybe, she’s not that bad?

 

Over the last handful of months, through the holidays and then through my heart-scare, I started focusing on myself. I started to try and re-learn to be.. well.. me. I’m not perfect, in fact, I have enough flaws to cover my entire county. However, what I’m slowly learning is that the most beautiful things are flawed. Eternally so, and that family and friends will love you despite those flaws. I’ve been working on my self-esteem, and my self-worth a lot, and in the process have been learning a lot about myself.

I’m not there yet. I’m not back, I’m still a few blocks away from the old me. I realized this, again, last night when I started apologizing for crap that had no need for a “I’m sorry”, much less an explanation. I’m still guilty of shutting my opinions up in my head. Most importantly, I’m still working on being open about being ill. I get scared that my friends will leave when I get sick again (although in reality, no one left who was worth spit in the first place). I get scared that new friends, will not understand, that they’ll bail when I come clean. For months now, I’ve been forcing myself to be open with everyone I meet, that I potentially could see a friendship with, about being sick. I’m learning to tell my family when I need help, or when I’m having a hard time. It’s a learning curve, all of it, but I’ll get there because it’s worth it. No one should have to feel like a shell of themselves, no one should doubt themselves that much, and no one should have to feel the kind of emptiness. Cheesy as it may be, but everyone is different, we all have different battles we’re fighting, and we all have different quirks and personalities. What I wished I had learned a long time ago is..

.. if someone doesn’t like who you are, if a person doesn’t support you, from family to friends and everything else.. kick their asses out on the curb.

 

‘Cause nobody got time for that shit.

 

Haha.

 

Once Upon a Time..

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Once upon a time, I felt healthy. Once upon a time, I felt like I could conquer the world. Once upon a time, I felt like I could do anything.

At one time, a compliment was just that. Now, “You look good today” just makes me wince. I just want to say: “Well, I don’t feel good.” or “I guess I did a good job hiding behind my makeup.” At one time, a compliment was just nice, now I wonder if people won’t take me seriously when I say I’m not feeling well because I look “fine” or I “don’t look sick”.

In the past, I would look forward to each day. I would wake up early, stay up late. I could go all day and do whatever I wanted. In the past, I ran my own life, now I “count my spoons” and hope I can make it through the day without becoming exhausted to the point of tears. Now, I look forward to when my daughter goes to bed, so I can finally stop.

When I was healthy, I didn’t have to have blood draws on a regular basis. I went to the doctor only when the flu got me down. When I was healthy, I never had surgeries, and only stayed over night in a hospital when my daughter was born. Now I’m a regular on almost every floor and I can tell you what vein and what angle.

Now that things have changed, I’ve learned how much stronger I a.m than I was before. I can face life with a different outlook than most people I know. I know the fear of dying, I know the feeling of constant pain. I’ve faced my disease head on and while I’ll never win, I learned to keep fighting. Now that things have changed, I know that the lessons I’ve learned, help me to appreciate life all the more. I know I’m a strong role model for my daughter. I know that if I’ve made it this far, I can do anything.

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.

Stress: It’ll Make or Break You. (Hint: Make isn’t fun either.)

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There’s always another curve-ball it seems like. It’s always one thing after another, or at least that’s what it seems like this week. Sometimes, it’s hard to keep a brave face on, to keep the smile going.  It feels like I’ve been asking for a break from the Universe for years now, but that’s how it goes.

After my surgery, I was positive that things would get a bit easier.  I mean, hell, I wouldn’t be admitted for sleepovers at my favorite hospital every month.. so that would be a bonus? While that’s absolutely true, I haven’t had more than a couple bad days with my Crohn’s Disease since, life just throws one more thing at me after another.

So surgery happened, and then the headaches/migraines started. MRIs (and the different variations of that I had done) showed nothing. The doctor ran all the neurological tests, and nothing. Tried some pills, and after a month and change, I occasionally get a day where I only get a headache for part of it.

I finally start getting used to the headaches, and learn how to “head them off” when they start, and start altering my lifestyle to maybe get rid of them all together. Stress makes everything worse, so why not lower stress in addition to exercise (hello weight gain from new headache medicine) and eating better. Things are looking up!

Until my car takes a big giant shit on that plan. My transmission hates me, so after it started slipping gears, I took it to my mechanic, who despite my insistence that I just had one done, blew $150 and gave my transmission a flush. That didn’t work, so I took it to a well-known transmission joint. They kept it for a week, changed out the valve body and a couple of other things.. and nada. So I took it back again, and for the tune of $1500 to $1800, they are fixing it. They said it would be a week… that was more than two weeks ago.

We rented a car for the first week and a half, but after running dangerously short on money (and hello beginning of the month, also known as *ding* your mortgage is due) we returned it.. after being told, oh, it’ll be done by Monday at the latest. Well, that was this past Monday.

While all of this is going on, Ryan’s job runs out of work. So when we need the money the most, we’re relying on my income and side jobs. It kind of works out, I was able to drive his truck to work this week a bit, but of course the side jobs come out of the woodwork on days I have to work.. so I was out of luck. Thankfully Ryan’s brother lent me his car, which was a life saver. Lets just say I was having an anxiety attack before he offered.

It doesn’t help that the guy snaps on me whenever I call for an update (because they have YET to call me to let me know what’s going on). So after a long day at work, where my office is SEVERELY understaffed temporarily (of course, while all of this is going on.. seriously, I must have some bad karma or something) and I’m running at stressed-the-fuck-out, I get to call this guy, and get snapped on, when I’m just looking for an update on when my life might get easier.

Then add into that, my daughter’s school is nothing but a pain. School starts on Tuesday, and of course, they have yet to send out ANYTHING about transportation or, I don’t know, school supplies or even her teacher. I’ve been trying to arrange a bus to pick her up from daycare, and it’s a major pain in the ass. Meet and Greet is on Monday (and I have no idea who her teacher is) and I promise this right now, if I go in, and they don’t have transportation set up, I will have a melt down.

All of this is going on, and it takes a toll on you. Ryan and I have been fighting like cats and dogs over the stupidest shit, just because we’re both so stressed out. It’s hard to remember that the other person didn’t cause this. Then, I find myself snapping on Noodle over stuff I normally let slide.. and then apologizing to her and beating myself up over it for days. It’s not easy, and I’m just waiting for a call that something else has gone wrong.

I’m trying to focus on the good things.  Like we both *do* have incomes, and mine is stable. Noodle got to go to the summer camp at her daycare, so instead of dealing with me being stressed out, she got to go mini golfing, to the water park and beach and to a festival. While I beat myself up about this being a stressful summer, I have to remind myself, Noodle’s had a pretty good one! I have to remember, I have my house, which thankfully didn’t incur any damage in that tornado that plowed through town last week. As of now, my car is being fixed, even if it’s a major inconvenience at the moment, in the years past, we didn’t have cars, or relied on one. Of course, even though my body isn’t completely okay, my Crohn’s is damn near in remission for the first time in just under a decade.

I’ve got to remind myself, while things are stressful right now, I’m damned lucky to be sitting at home, writing, with a cup of tea, a sleeping child, and my dogs (and asshole cat) lounging on the couch. They could be a lot worse, they have been a lot worse. We are lucky.

Random Ramblings Again

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It’s been so busy here, it’s unbelievable.  Here it is, already the middle of June and I am still feeling like it’s the beginning of spring.  Of course before I even register that it’s pretty much summer, school will be starting and summer will be over.

I went back to work about 3 weeks after getting out of the hospital.  Those 3 weeks at home weren’t exactly bliss.  What I was hoping for was 3 comfortable weeks to get back on my feet and spend some time with my kiddo.  What was it really?  It was filled with both my daughter and I getting a cold (which we both still have coughs from) and what I shall term the never ending headache.  (I’ll get to the headache later)

Honestly?  Those weeks I learned how inpatient I really am.  I do not like the whole “time to heal” bullshit, it’s basically admitting that I need help and downtime.  While being at home itself didn’t bother me, I didn’t like that my body couldn’t keep up with what I wanted to do around my house.  It was damn hard to sit there and know that chores needed to be done, but I could only do one thing before I wore myself out.

It was nice on one front though, I was able to take my time getting the short one ready for school in the mornings.  Eating breakfast was leisurely and filled with chatter.  I was able to get her home right after school, so afternoons were spent outside or hanging out together indoors.  I’ve only been back at work for just under a month, and I already desperately miss that extra time.

Noodle is perfectly content with going back to full-time daycare now.  Her daycare morphs into a summer camp every year (and is still cheaper than most daycares around here).  They go to the beach and water park on alternating weeks, and take field trips to go mini-golfing and to different parks around the area.  She’s already been to the beach once, to a joint with bowling and one of the many bouncy-house-filled-trampoline-places that have become ever so popular.  Summer camp is always so fun for her, while I feel guilty for missing out on time with her because I’m at work, she’s off having a blast!

Like I said though, I’m back to work.  It hasn’t been as easy as I thought it would.  It’s still taking some time for my brain to catch up on my tasks (which involve dimensions and math at the moment), but I’m getting there.  I never really got off of my sleep schedule, so that wasn’t/isn’t a huge issue.  The toughest part has been dealing with my apparently numerous health issues while trying to act like nothing is wrong at work.

I had an issue for a couple of weeks with one of my incisions, it kept opening up and was infected for a short bit.  Trying to take care of that, while wearing pants (it was right where the waist band sits) and talking to coworkers and customers wasn’t exactly my idea of fun.  That and the headache… or headaches… or whatever (again, I’ll get to that), it’s damn near impossible some days.

I feel bad because I know I’ve been snippy towards my coworkers, and I’ve made it a point to apologize and try to keep them in the loop with everything.  It’s still not their fault, but sometimes the pain and fatigue is a little much, and they’re in the wrong place.  They are basically like an extended part of my family at this point, so hopefully they take my apologies to heart and understand how rough it’s been.

So.. the headaches.  In a previous post I mentioned the first headache I got in the hospital.  The one that couldn’t be eased even with morphine, dilaudid, and ativan.  The one that made me think I was going to die?  Well.. apparently that’s part of my life for now.

Shortly after I got out of the hospital, I coughed (remember I got sick?) and BAM! my head exploded.  I dropped to my knees just holding my head.  4 hours later and I could function a bit like a human being.. but it left me with a low-to-mid grade headache that never went away.  So following the floor doctor’s instructions, I made an appointment with a Neurologist.  So for the better part of a month, if not more, I’ve had a headache every day.  Some days are worse, some days are tolerable.  Some days I am relatively normal?  Some days I just cry.

I went in to see my new doctor on Monday.  Very, very nice lady, who asked me a bajillion and one questions and preformed a neurological exam.  She’s not entirely convinced that the headaches are migraines for a few reasons, the biggest being that when I have a headache, light and sound don’t hurt me.  Just motion.  She’s trying to figure out what kind of headaches they could be.

However, since the first one I ever had was in the hospital after major surgery, she wants to rule out a blood clot or something along those lines.  I had a MRI while I was in the hospital, which was clear for massive clots and tumors, but she wants me to have an MRV and MRA, which are similar but look at the arteries and veins in your brain.  That appointment is on Monday.  In the meantime, I’m on a headache preventative and I have some pain pills as back up.  I know I have to give the medicine time, but seeing as how I had vision changes which bloomed into a huge headache (luckily it popped in my mind that the vision changes I was having might be what’s called an aura… and took a pain pill before the headache hit… so I took the edge off) yesterday, that hasn’t left yet (although it’s a bit better this afternoon), I’m nervous.

To be completely honest, I am just scared that I’m going to end up with another chronic condition.  What if I end up having these headaches long term on top of my Crohn’s Disease?  I know that I’ll buckle down and make it through, just like I always have, but it’s terrifying to me to have to face something else.  I went into surgery with high hopes of an improved quality of life, come out and end up with headaches… and now what seems like Crohns symptoms.

Yeah, I have symptoms that remind me a bit of when I first got sick.  Odd stomach pains, running to the bathroom, etc.  I hoping it’s really just an oddity, a side effect of surgery.. maybe it’ll go away soon?  I’m giving it a little time to see, but then I’ll be calling my GI.  I really, truly hope that this isn’t the disease coming back already.

The whole headache/Crohns debacle just really gets to me.  Like I said, I let my hopes get really high for this surgery.  I’ve been sick (with good days at some points) for 8 years now, I allowed myself to hope that I’d get a break after surgery.  Coming out of the whole ordeal with a whole new health problem is… well.. it’s hard.

Honestly this is where I’m thankful for the people around me.  For Ry, who’s literally been by my side through all of this, from all the hospital visits to surgery, and now with head/neck massages when I want to crack my own skull in two.  I’m thankful for my daughter, who understands that sometimes mommy has to take it slow, and through living with me, has learned a compassion that most kids her age don’t get.  Sometimes her hugs and kisses (and HUGE art projects… excuse me, weather machine.. ahem) are just what I need to keep trucking.  Hell, I’m thankful for my coworkers who visited me at the hospital, and have been making sure I take care of myself at work.  All the way to my neighbors who have helped out all they can.

I did manage to feel pretty good for Noodle’s birthday WEEK though, so that’s a major bonus!  Yes, I said week.  The kid lucked out this year due to everyone’s schedules kind of colliding.  She got one Saturday at Grandma and Grandpas, her birthday at home, and a party with the neighbors the next Saturday.  I think my kid is actually sick of cake at this point.  She got a lot of great gifts too, I’m super glad she had fun, because she deserves it!

Which reminds me!  I got her last report card, and my kid got good marks in everything (except for handwriting… it’s messy).  She tested well in math and is super ahead in reading (that’s my gal!!).  I am definitely proud of my little monkey and how far she came these past two years.  We went from her not wanting to read, claiming she couldn’t, and flat out refusing to read out loud, to reading everything I give her, quickly too.  Definitely a proud mama here.

I think that’s enough for tonight though, I had a bunch of thoughts bouncing around in my head.. as you can see my writing is just all over the place.  However, if you  haven’t noticed, I’m not much one for proofreading, and sometimes I just have to get it out.

I’m off to bed.  Goodnight!

Split Second of Terror

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Saturday started off very well. Surgeons moved me to normal food, which I tolerated perfectly. My doctors took away the iv drugs and fluids and we had the midline pulled. I felt great.

I got up to run to the bathroom, sat down to do my business and my head exploded. It took everything I had to finish cleaning myself up and get myself to the call button.

I had never experienced pain like that before and after a few minutes the doctors had gathered around since my heart rate shot up to 190. They were concerned about a blood clot in my brain. Hearing them ask for a crash cart just in case.. I could barely hold it together. I thought about the kids, about my parents and Ryan. Was this dying?

I cried all the way down to cat scan and then though MRI and an EKG. I got back to my bed. Was given more drugs and slept. Both scans appear clean.

Made it all night without pain medication, I was so excited! Maybe it was a fluke, I’m okay! Woke up for vitals and bam! Headache! It’s not as bad as the last one, so maybe we can figure it out.

It’s just so disheartening. After all these years, I finally get surgery for my Crohns Disease. It goes well, so I start looking at the things I wanted to do this summer but usually don’t because my health. So close. So close to normalcy.. and something else has to happen.

Let me tell you something though, when you’re laying on a bed, listening to doctors freak out about blood clots, sending you too another hospital, etc, your mind turns off and thinks. You think about if “this is it”, you’ll think of your family, of the things you had been promising yourself you’d change for the better. You block all of them out as the aide hands you your teddy bear and you think about all the stuff you have taken for granted.

Obviously I’m still here, still kicking, but that little scare put everything into a new perspective. It’s a scary new perspective, but it’s essentially a clean slate that I get to start as soon as I get out of here.

Living is not the same as living life.