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.

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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.

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!

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.

Is it Summer yet?

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I am home from the hospital, and currently relaxing on the couch with my two mutts, little one all tucked in for the night. I missed her quite a bit, even though I was only technically in the hospital for 3 days… she on the other hand, thoroughly enjoyed her vacation from Mommy.  Usually if I have to go into the hospital she either goes with my Dad (where she is spoiled rotten) or she goes to one of her old teacher’s houses (a friend of mine who works at her daycare… who also spoils her rotten I’m convinced). When I got home I warned my friend, we’re chopped liver when she’s around, and to have fun prying her out of your house. Sure enough, she was a bit upset that her fun was over, but I got a super big hug and a kiss when she walked in the door.

Oddly enough, this little hospitalization timed itself perfectly as the munchkin’s got a bit of a head-cold and wouldn’t have been able to go to daycare anyway (spring break up here in the mid-west. So we got to spend the day lounging together and relaxing, with both of us asking each other how we’re feeling and if we the other needed anything.  Honestly, it was quite cute.  I don’t know what I’d do without my little minion, she’s one of a handful of things that keeps me moving, even when I don’t feel well or am down in the dumps.  Between her, the boyfriend, and all the pets, I get cuddles whenever I want and love, more than I can handle.

Sometimes though, it’s hard not to get down in the dumps. Especially in the winter, well, I guess now “Spring”. Lately in the mid-west, Spring has been colder than usual, so if you’re someone like me who gets the so-called “Winter Blues”, this time of year is wretched. Where we’ll get one warm day and then snow.  For instance, we already broke 70 degrees, and then it snowed about a week later. I’m definitely counting down until it starts to warm up. Hopefully my mood will improve on it’s own then.

Definitely looking forward to late Spring and Summer this year. We have a lot planned, from trips to the lake house, to farmer’s markets and such. The last few years were really busy, last summer especially with my working insane amounts of hours, both in the office and out. I feel like I missed out on a year, so I’m making sure that doesn’t happen again. The Short One has already been able to go roller skating outside and to ride her bike (she’s still doing great on it, although she still takes the occasional spill – the boyfriend taught her last summer) so pretty much anytime it’s warm enough to unzip your jacket just a tiiiiny bit, she’s asking to go outside. We can’t wait.

I know I’m probably looking at some health issues this summer, but hopefully we’ll be able to plan them out (surgery?) since Grandpa wants to take her if I do go in so they can do something fun together. To be completely honest though? I’m just looking forward to the kids all playing in the backyard and relaxing on the deck. Come on Summer! Get here already!

Welcome to Puke-Fest 2015

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Yes yes, as the previous post stated, my butt is back in the hospital for yet another obstruction with my Crohns Disease.  2nd one this year and it’s only March, so obviously something isn’t right with my body right now.  I actually saw this one coming, so I had a bit of time to prepare and plan, unlike the one in January. That one I had absolutely no clue what was going on, I actually thought I had food poisoning, when usually I can tell you exactly where the catscan will find inflammation.  Oh well.

Anyway, Monday night, I felt pretty bloated and had some major cramping.  I knew right away to lay off the food and wait for the nausea.  I’m not one to get nauseous easily (unless I just got an Entyvio infusion apparently), so nausea is usually my “Get-Your-Ass-To-The-Hospital” sign for obstructions.  Tuesday morning I was super nauseated and looked like I was 6 months pregnant instead of my normal 4, shut up, I like cupcakes.  I forced myself to take a shower, as I know I wouldn’t be able to take one for a bit and it was blantantly obvious I was headed to the ER.  I took the monkey to school, called my doctor and went into work to help out while I waited for a call back.  My work is the halfway point to my hospital of choice, plus I felt bad that I was leaving them with a mess to clean up.

After a while of no calls from my doctor, I decided fuck it.  I felt like hell, I had given them the heads up they always ask for, I was going to just head in.  I was nauseated still, but didn’t feel too out of sorts that I couldn’t drive so off I went.  I literally made it 5 minutes away and BAM!  Puking.  I pulled off onto a side street and spewed everywhere.  After a few minutes of people driving by and gawking I realized the puking wasn’t going to let up and I had to call 911.  (Also, don’t pull over to puke in million-dollar-house-neighborhoods – they get offended…) I had a hard time telling dispatch where I was and out of the 6 or 7 cars I waived down, only one stopped to help.  Once I had the address to them, the lady stayed and waited with me until the ambulance got there.  After almost puking on a firefighter, I was packed away with 3 of the nicest EMTs I have ever encountered and off to the ER.

On the way there they couldn’t start an IV, so Zofran (an anti-nausea drug) wasn’t an option, so I did my best, and one of them talked me through the heaves.  To be completely honest though, I started to get scared.  My blood pressure severely dropped (which considering my normal is 90+/50..) and I couldn’t hold myself up or stop shaking.  Once my vision blurred, I about lost it and told everyone I was scared.  Once I got to the ER, the nurses failed at an IV and I had to wait for the IV team to show up (they blew 3 more non-existent veins) and the nurses stayed by my side because I was still scared.

Let me tell you something, in the 8 years I’ve been sick, 7 years diagnosed, I have never been that scared.  I’ve had pretty much everything go wrong with me, but having my blood pressure drop like that and losing control of my body did it.  I know my way around obstructions, and this one was not normal.  The EMTs even stayed until I was stable (which oh my god, how nice, I’m so buying them sandwiches and dropping them at the station next week).

I guess from what I understand one portion of my intestine in front of the blockage was so dilated that basically my body started to panic.  I know that’s not the medical term for it, but I was pretty much high-as-a-kite when they tried to explain it to me.  All I know is that I was scared, and I do not like being scared.

So all in all, beyond the thing on the way here, it’s been a pretty run of the mill obstruction.  I guess the stricture that keeps causing them is getting really really bad, to where at this point, modifying my diet isn’t really helping much, and it’s not really a question of if I need surgery, but when (hey naysayers, I’m glad I held out this long… the fistula is healed as of now, so no bladder surgery for me you asshats).

After talking with both of my remaining GIs (one of whom I love), and my surgeon, it’s basically been agreed upon that I’m going to see if I can make it through another few infusions (Entyvio takes approximately 10 weeks to work ~ 50% rate of remission) to give the drug a chance to actually get what little inflammation I have left to get the hell out.  Then we’ll schedule the resection.  The surgeon and I also agreed if I get too uncomfortable at home, or end up back here, that surgery will happen (I about demanded it during puke fest) and I let him know I will not leave until the stricture has been snipped out.

Now I’m not one for surgery, especially for things that have the option of healing on their own (ie: the fistula – which again naysayers, even the surgeons agreed with me on that one).  However, this stricture (narrowing of the bowel – ie: scar tissue) is getting so bad, the hole so small that almost nothing can get through.  Which limits my diet severely (mainly to overly processed crap that I HATE eating, and I’m not allowed anything from my garden, which makes me want to cry to just think of it) and severely impacts my quality of life.  I’m basically getting tired of not only being sick all the time, but now losing things that I enjoy (like my garden).  So it’s time I suppose, now it’s just up to my body to see if we can put it off and pre-plan it for during the summer when Ashley doesn’t have school, or if it’ll be immediate with another ER trip.  I don’t know.

All I know, is that I’m tired of this, and I want to get better.  If I’m going to suffer through the side effects of Entyvio (which STILL SUCK btw), I want the rest of my non-infusion time, to be enjoyable… not stuck in a hospital bed.

Le Sigh.  As for now?  I just ate my first solid meal, if I can not puke, and there’s no more pain, I can go heal at home, so I’m crossing my fingers.  I miss my kiddo (although apparently I’m chopped liver since she’s had sleepovers at her favorite teachers house) and my pets.  I want my own bed, my cuddles from my family and a full nights sleep without being woken up for vitals.