Fear and Loathing – IBD/IST and New Friends/Relationships

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Hi. My name is Sarah. I like animals, crafts, and the outdoors. I like to read and write, and oh yeah! Before I forget! I also have a couple random chronic conditions that unfortunately occasionally put my butt in the hospital, and require paramedics. Don’t worry about that though! You can save up all of your bitterness for years down the road and throw it in my face when we argue! It’s all good.

Yeah, I’m not very good at meeting new people. Friends, Lovers, or otherwise. I’ve had the same group of friends (most of whom I consider my family) throughout the majority of my illnesses. It took me a long time to cultivate those friendships from hospital beds, and ambulance bays. I learned who my real friends were, and I also learned that my being ill, can destroy relationships quicker than a bullet to the gut.

I’ve learned that even the most caring people can’t take loving a friend with a chronic illness. Romantic relationships seem to take the hardest hit. Eventually there is just this large amount of bitterness, resentment almost, because I intentionally or unintentionally change plans and lifestyles. Over the last decade, I’ve watched relationships crumble, friends fade away, and family get frustrated. It’s not for everyone, and it takes an extremely strong person to stand by someone with a chronic disease.

Naturally, after all this time, I’ve become almost.. paranoid about telling people about my illnesses. I try to take care of it right up front, just to get it out of the way. That way some people just back out right then. Either way, it’s out in the open. However, if I’m actually sick, like most other people with chronic illnesses, I tend to hide it. I walk through the pain, I make excuses for when I cancel plans, I pay extra care to my make up and clothes. We are experts at hiding what’s going on inside of ourselves.

Of course, I meet someone when I’m sick. I meet someone when I’m headed down a rough road. So of course, I try to hide it, “I’m fine” and “I’m okay, I’m sure”. However, sometimes you just can’t hide it, no matter how hard you try. The truth is right out there, in their face. Right out in the open, obvious. You. Are. Sick.

Well, here I go, I guess it’s just another risk I have to.. no, want to take. I just have to learn to be honest, and up front. Hiding it from someone I care about isn’t fair, they won’t know what’s real, and what’s fake.

So, hello. My name is Sarah. I have a chronic illness called Crohns Disease, as well as Inappropriate Sinus Tachycardia. My life isn’t simple, but it’s one hell of a ride, welcome to it!

 

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It’s been a long month.

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It’s been a busy, busy month. As most of you know, I have some health problems. Apparently, in addition to Crohns, my heart apparently has some quirks too.

My heart itself is fine, it just decides to beat excessively fast than it should at inappropriate times. It’s called Inappropriate Sinus Tachycardia (which is part of SVT). It’s practically harmless, but insanely terrifying, especially if you don’t know what’s going on.. which I didn’t for the first few weeks it was happening. I’d be sitting down relaxing, or in the shower, and my heart rate would shoot towards 200.

So this month has been filled with appointments with cardiologists, kidney specialists, and an electrophysioligist. I had an heart study last week, with the hope to pinpoint and maybe to do an ablation if possible (before they thought it was IST).

For now I’m just going without medication. I had tried one, but it dropped my heart rate too low and I need to think on it. I have another appointment with my EP in 2 weeks to discuss. I guess I’m just happy knowing what’s going on, not as scary otherwise.

Beyond that, things have been pretty good. With all the crap going on, I was able to realize what was really important and what I actually wanted out of life. I’ve been spending a lot of time hanging out with Noodle as well as working on projects at home. Now that I have the heart stuff starting to get figured out, I’m going to focus on extra curricular stuff for Noodle and new social ground for myself. I do have to say, thinking you’re having a heart attack a few times, really helps you get over a break up. Haha.

Now it’s just time to weasel out some good swimming classes for the kid, and I’d like to find one of those beer & book clubs for myself. Wish me luck!

Christmas Time Lessons

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When I was in 5th grade, Christmas was looking pretty much like hell. My mother was dying of cancer, bills were abundant, and my parents were miserable.

My parents friends and co-workers got together and bought us presents, all of us, dressed someone up as Santa Claus and showed up at our house one night. That was looking like a really hard Christmas, and thanks to the goodness of our community, our last Christmas with my mom was great! I remember tearing through presents, while my mom sobbed with happiness. As I got older, every year I’ve reflected on it and felt blessed.

A month ago, my ex left. When he left, he took things I’m still discovering are gone. I came home to an empty house, with a beat up couch, the freezer, 2 plates and some glasses left. I was given one month to get a replacement for the couch and freezer on top of trying to figure out how to afford pots and pans, lamps, tables, plates, utensils.. the list goes on.  I had to figure out how to replace stuff I had taken for granted since my first apartment.. then pay my ex’s portion of the bills he flaked on. It honestly looked like Christmas was out of the question. My heart broke, not just because I was betrayed, but because it looked like I wouldn’t be able to give my daughter a decent home AND Christmas presents.

So after I cleaned up the mess he left the night I got back home, I put Ashley to bed and sat on my kitchen floor and tried to figure out what I was going to do.

In the month since, I’ve found out horrible things about my ex, heartbreaking things, it’s been rough facing them, but this whole time? My family, friends, even people I haven’t seen in years, even people I’ve never met in person have rallied around Noodle and I. From couches to tables, to plates and silverware, pots and pans to hand towels started arriving or being dropped off. Books and pens, more cards than I can count. So while I covered bills, people who care about us covered what I needed, provided support and an ear. More recently.. presents. Noodle has received presents from family I haven’t seen in forever, and dear friends, I’ve gotten a few too. Hand delivered, fed exed, and left on my doorstep. I had managed to use what little money I had saved to get stocking stuffers and a few small things, but friends chipped in so I could pick out a few more.

A month ago I felt lost. I was worried, in tears and scared. Almost two decades after family and friends took care of my family the first time, it happened again.

The best part of everything that has happened? In one month, I went from feeling so incredibly sad and alone, to knowing I’m far from alone. In one month I learned how much people care for Noodle and I. I was lucky enough to watch a community rally behind us and stand with us, not once but twice. I am lucky enough to know, that while things will be rough for a little while, I know that we’ll be okay. I know that I have friends, that we’re not alone. I went from dreading Christmas to looking forward to it.

I think I learned the best Christmas lesson, twice. The world may be a scary place, but there are a lot of good people left. Knowing this, is the best Christmas present I could ask for.

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.

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!

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.

Smiling.

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Birthdays usually don’t go as planned for me. Not to say that they’re horrible, but more like I seem to have child-like expectations and the day seems to miss it’s mark.

I have to say that this year I was more than pleasantly surprised. We really had no concrete plans, but I enjoyed almost every moment of it. Now, at the end of the weekend, sitting here with my cup of tea, I am happy.

Ry, the kids, and I went up to the lake house to see my Dad. I love it up there, from the quiet (my aversion to people) to nature, to spending time with my family… I almost hate coming back. We spent some time outside, the kids got to go on a walk on the shore to collect shells, and ate some delicious food. Between spending time with my family and getting some quiet moments, it was perfect. Ry and the kids picked out a matching bracelet and ring set made from spoons and we did an Easter egg hunt for the kids.

After all of that, we made the trek home. While we were up north though, Zach and Ryan built me a tea case. From cutting, sanding to assembling.. it was all them.

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I absolutely adore it! I love handmade gifts, and the fact that both of them worked together on it makes me tear up. I love it.

So here I am, end of the day, kid in bed and tea in hand. It was a good birthday thanks to my family.