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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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!

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!

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.

Slice and Dice 2015

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I had my first bowel resection yesterday. Let me tell you, that’s not on the things to do for fun list.. nope. I haven’t had anxiety attacks like that in a long, long time. The day before, lab and the iv team were having a hard time getting blood and keeping me from blowing ivs. I ended up with one on the inside of my dominant wrist. The iv team guy was completely honest with me, he didn’t think it would hold and thought I needed a picc line. At that point I had been stabbed numerous times and my anxiety had gone into full-fuck-you mode.

My surgery was scheduled for 10:30am. Lab came in to try and draw blood and got absolutely none. After the 3rd attempt or so I started to lose it. Had to ask for anti-anxiety medicine. Shortly before surgery, the guy from the iv team blew in to start a mid-line. He was afraid that surgery would blow my last iv and not be able to start another. 4 tries and he got it, but it was pretty gruesome. I’d post a picture, but I don’t want to freak people out. Anyway, it’s much better now that I’m not having an anxiety attack every time someone has to draw blood.

Surgery itself went fine. They removed a small portion of my small intestine and part of my colon. They also were able to detach part of my colon that had decided to cling onto my bladder. No bladder reconstruction needed!

To be completely honest though, the pain is a lot more than I expected. I have a pain pump that I’m just now getting used to using so I can at least get a little comfortable. It’s taken me a little bit to feel comfortable dosing myself, especially due to this one nurse..

Backtrack: there is a nurse on this floor that I’ve been referring to as the Know-It-All-Nurse. She’s the one who originally made me feel uncomfortable here. I’m not much one for pain medication, I don’t take it unless I truly need it. So Know-It-All refused me a shower before surgery because of my continuous drip of prednisone. (I literally had to have my doctor add a note in my chart to unhook me if I ask) So, by cleaning up the best I could, I started to get some pretty bad pain. 8/10 pain. I asked for a half dose of my dilaudid. First thing out of her mouth was a comment about how I should cut down on it.

Excuse me? 1. I wouldn’t be in pain if I could have taken a shower the normal way. 2. I have major surgery tomorrow, and you’re worried about a half dose? And 3. I NEVER ASK FOR PAIN MEDS IF I DON’T NEED THEM.

So whatever. Back to present tense. All day I’ve had my surgeon, the surgical PAs, and my GI telling me to press the hell out of the button on the pain pump. Basically that since I already have inflammation on top of just having major surgery, it’s going to take a lot to make me comfortable. I was having anxiety attacks all morning over pretty much anything because the pain was so bad. I finally got a hang of using it and am halfway comfortable.

In walks Know-It-All-Nurse. She has already been condescending about my not wanting to wear the compression boots because I am up walking and getting blood thinner shots. It took her all of 2 seconds to say “Well it looks like you’re using your pain pump a lot.” Duuude. I’ve never had a nurse talk to me in such a condescending tone. No shit I’m using it a lot. I’m supposed to. I’m already back on the verge of panic and all it took was her showing up. Now I’m such a bundle of nerves that I don’t even want to ask for my anti anxiety medication, I don’t even want to deal with her.

Seriously, the rest of the staff here have been phenomenal but this has been the most nerve-frying, painful stay I’ve had here. This nurse is making it 10 times worse. I’m almost tempted to ask for a different nurse.

Arrgh.

When I feel better…

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Anyone with a chronic illness can vouch for me here. Sometimes, more often than not, you’ll make plans or put something off until you feel “better”.

There’s always the argument that you can’t just waste your life waiting, which is promptly followed by put your health first! I end up doing a little bit of both and it’s just left me frustrated.

I can’t tell you how many things I’ve missed out on because I didn’t feel well and wanted to put myself first. I also can’t count how many times I’ve made myself even sicker by doing something so I didn’t let life pass me by. No matter what you choose, part of you always gets the short end of the stick.

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Well, hopefully things start to change here soon. I’m back in the hospital with another obstruction. I feel bad because this time Ashley got upset at school about it, however she’s now in sleepover heaven and “never wants to leave” haha, but still. I miss my monkey, I wish I was at home, but this time things might go a little differently.

So yeah, obstruction. Part 3 in 2015. Totally lame, it’s mostly caused by scar tissue at this point. After last month I went home and stuck to a low fiber or soft diet to make things easier on my insides. Both doctors (surgeon and gi) wanted to give Entyvio a chance to work before the big slice and dice.

So the second week out, I had what I think was a partial obstruction just from moving from soups to other foods. It passed though, although I figured out over the last weekend that I was on borrowed time. My stomach stayed acting up after eating fried eggs out of all things. By Tuesday, I knew I was pretty much screwed when lunch kicked my ass.

I had an MRI yesterday, while the good news is is that my fistula closed, the bad news is is that the scar tissue is so bad, nothing bigger than an eraser head on a pencil can get through.. on a good day. So I give.. surgery it is.

I’m tired of Crohns running my life. I was okay with having a couple of bad days a month but not being able to eat anything? To end up in the hospital more times in one 4 months than I do in a year? It’s impacting everything, my daughter (sadly, she’s almost used to it, which is almost worse, but she’s very helpful and sweet.), my relationship with Ry, my work, and quality of life. Enough is enough, slice and dice it is.. and bonus, I won’t lose time out of summer. I always hate being in the hospital when it’s warm out.

It’s really easy to get down on yourself when you’re sick. It can really make you feel like a burden on those around you, I know I really rely on a lot of people when I’m stuck in here. Jess really helps out with Noodle, which I’m eternally grateful for, Nood absolutely adores her. Given a chance I think she could spend forever there haha. I rely on my online friends to talk me out of the inevitable funk I fall into in the hospital. I rely on Ryan for pretty much everything else. Then of course my co-workers suffer. I feel like people will start to resent me but I’m thankful for the support net I have, however small. I don’t know what I’d do with out everyone.

Hopefully this surgery will really improve life, both my gi and surgeon think so. It should be just a basic bowel resection, and I’m meeting with my surgeon tomorrow to nail down whether it’s going to be next week or the week after. I’m going on steroids for a couple of days for sure, but we need to meet and talk about the pros and cons to waiting for steroids to work a bit or just jumping into it.

I’m just looking forward to getting some kind of normalcy back in my life. Wish me luck.

If it ain’t broke, don’t fix it, surgically remove it.

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Crohn’s is a dirty, dirty, low-blow throwing bitch.  Even worse, my mind is my own worst enemy sometimes when it comes to my treatment.  I have such a hard time accepting the different stages of treatment.  Hell, just page back through the entries, you’ll see the mental dilemmas I went through when I was considering going onto Humira.  (Like that even worked, totally lame!)

Now look at me!  I’ve been getting infusions of Remicade since last year, been on (and took myself off of) 6MP, and am still living on Prednisone.  Add in dozens of antibiotics, muscle relaxers, corticosteroids, and assorted other crap, and I’m pretty sure if my genes didn’t dictate that I am to have cancer, ONE of these meds will have caused it.

Next up on the Crohns To Do List?  Surgery.  I’ve narrowed down S-Day to the first week of December, if my surgeon’s schedule allows (I’ll find out tomorrow, unless my subconscious sabotages me again).   Like I said, I’m still on Prednisone, I’m on my last week of tiering off.  So only a couple of weeks of hell left.  My current mental problem?  Now that I’m starting to feel normal again (starting being the keyword, minus the steroid side effects of course) it’s harder and harder to accept that I need surgery.  When my days are damn near normal, it’s hard to think that I’ll be going under the knife in about a month.

Now now, I realize that I have to be remotely healthy to have surgery, (since it’s not an emergency situation and to get the best possible chance at a quick recovery) but damn, the better I feel, the harder it is to convince myself I need to have part of my intestines removed.  I’ve been putting off surgery for a long time now, feeling somewhat human makes that easier.

On the flipside of that note, I also realize that this fistula isn’t going to heal on it’s own.  Obviously.  I am coming to terms with the fact that I NEED surgery.  That I need to get this taken care of, and once I do that, I’ll actually have a true chance at remission.  I know that if I put this off, eventually I’ll end up with an obstruction that puts me in the hospital for a much more complicated surgery.

 

So time to buck up and deal.

 

And take my stupid pills.

 

Stupid Prednisone.