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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Valentine’s Day and Loving People

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Welp, another year has passed and its here again. Valentine’s Day. You know, the day where social media is overwhelmed with either singletons whining about how its a meaningless hallmark holiday or pictures of roses, chocolate or proclamations of love.

I used to be in the anti-valentine’s day club. You know, crazy freshly divorced lady. My biggest argument was that you shouldn’t need a single day to make you want to do things for significant other but should all the time.

I still believe that, but I guess you could say that the thought process is expanding.  Now, at 21 + 5 and on my 2nd Valentine’s Day with not-my-ex-husband, I’m adding to my old ideas.

Yes, you should be wonderful to your significant other every day.  You should. You shouldn’t need a reason to show your love. However, if you’re in a relationship where your partner treats you like you’re the got-damned Queen (or King) why is it so wrong to use a hallmark holiday to go one more step? Why not use it as an excuse to do something nice?

Its not. Simple as that. I think that by now we all know it’s a hallmark holiday but all of us know that it also sucks to be single on a holiday that seems to be aimed solely at couples. People who indulge in Valentine’s Day dont have horrible relationships where their partner is horrible to them on the other 364 days of the year. They are in a relationship where thier partner was thoughtful enough to indulge in a silly holiday. 

More importantly. Its not about just couples, at least not to me. Yes, the boyfriend and I celebrated and I got a sappy card and present. However I also spoiled my daughter with candy and a stuffed animal. We made Valentine’s Day cards for her grandparents and I took time to appreciate those who I love, those who love me.

So I guess I’m done being a hater. Vday is okay in my book, maybe its because Im in a long-term relationship.  Maybe its because I’m getting older. But maybe instead of focusing on who we dont have in our lives, we should focus on who we do.

Happy Valentine’s Day.

A-Pick-Me-Up

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Because... Duh!

Because… Duh!

 

Sometimes when you’re down on your luck, angry or hurting, only a good friend can cheer you up.  I’m lucky, I have a handful of very good friends, and a handful of ladies who I could consider my best friends.  Through out these past few years I’ve learned a lot about friends, and what a friendship is really made up of.  Some of these lessons were painful to learn, but the more painful the lesson, the more important and vital it was.

Today, I’ve been grumpy all day.  I haven’t been feeling good thanks to a long-lasting cold (my compromised immune system blows) and my Crohn’s acting up.  Just a plain awful mood.  I felt like laying in bed, but instead dragged my butt to work and did what I had to do and more.  By the time I got home I was ready to curl up into a ball and sleep.  Ryan told me I had received a card from someone and he left it on the Kitchen Table.  So I open it up and instantly smiled.  A thoughtful card and a handwritten message from a friend made my day.  I wouldn’t use that gay saying “turned that frown upside down” but I wasn’t near tears anymore.

Sometimes the simplest things can fix a bad mood, and a card from a friend after a hard day can cheer you up.  It was just an awesome reminder at the end of my day that I am very lucky to have such great friends.  It also reminded me to return the favor and pay it forward.

Over the years, friendships have died, exploded and spontaneously combusted and I’ve learned.  Real friends can live next-door or across the continent.  Real friends could see you every day or you may have never met in person.  Real friends won’t give up when you’re a shit-head and stand by you when the going gets tough.  I’ve learned that sometimes a skype or phone coffee date is more meaningful than weekly ritual ones.  I’ve learned that taking care of a friends teddy bear means more than a lot of people know.  I’ve learned that friendship isn’t defined by simple terms, but by how much you care about someone.

So to my friends, I love you guys.

The things I hate about you… and by you I mean Crohns.

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I feel a bit blah today.  I know why too, and I hate it.  Just like I did last time.  Prednisone.  The oh so wonderful steroid that helps so many of us Crohnies, kicks my ass.  Yes, it helps with the fistula and it helps push my disease closer to remission, but good god do the side effects suck.

I’m not sure what it is about this time, but the side effects have popped up in half the amount of time.  I’ve only been on a heavy dose of steroids for just over a week and I feel like I did three weeks into steroids last time.  My body aches, my joints sting, and my skin hurts, especially around my face and shoulders.  My brain is foggy too, which was a huge complaint of mine last time around.

The point of taking steroids this time is to get my body healthy enough for surgery, which I’m willing to do, but that doesn’t mean I’m not going to complain about it.  I feel hung over, even if I haven’t had a drink in longer than I can remember.  I feel blah.

It definitely doesn’t help that this week was very busy, especially the last half of the week.  We had two girls out, and I have been playing catch up on top of it after missing days for my hospital stay last week.  Combined with the extra hours I picked up to help out and these stupid drugs I’m on, I’m exhausted.

I got a lot done this week.  I feel like I’m caught up at work for the most part, and the house doesn’t look too shabby.  Bills are paid and errands have been run.  This week was hell, just like last week was, but at least it was productive.  This weekend looks much better though.  Ryan is going to be working a short day tomorrow, so that means lounging around the house until he gets off of work and then relaxing for the rest of the weekend, until my drive to clean and organize steps in anyway.

As always though, I’ve been doing a lot of thinking, as I always do when I get sick.  It seems like when you’re down and out with your health, your true support network shows through.  As always, I am reminded how lucky I am to have such wonderful people in my life, and how happy they make me.

I’m lucky to have a job that I love and that accommodates me with my odd health schedule.  I may want to torch the place half the time, and bury my coworkers in the back building, but hey, who doesn’t?  I’m lucky to have coworkers who give a shit about how I feel and my overall health… even people I don’t work closely with every day have shown concern.  From truck drivers to stores, every day someone new pops up and asks how I’m feeling and how I’m doing back at work.

Of course I’m extremely lucky to have my parents.  My dad took Noodle for a couple of nights while I was in the hospital last week and spoiled her.  My sister apparently took her to the zoo, but I wouldn’t know first hand, I heard from my Dad.  I’m glad that I have such a lovely family who looks out for my kiddo and takes care of her so I can rest and heal.  My friends have played a huge role, from my “cafe-mom” friends to Katie and Ingrid (Girls I grew up with).  My neighbors even brought over a meal when I got home and have cut me some slack for my crap-mood.  Yet again, I’m reminded that family is not just blood.  Some times people who aren’t even related to you, step up more than blood does.

I am more than grateful for Ryan too.  When we first got together, I was concerned about how he’d react to my Crohns Disease.  I mean it sucks, some days I hurt too much to eat, or am feeling run down enough to just want to lay in bed.  (Granted, I’m still more active than half the people I know haha).  I worried what he’d think about my having to get Remicade Infusions, or when I’d end up in the hospital again (we actually started dating right after my last obstruction ~ cute note ~ he had offered to bring me a bag of books while I was in the hospital, it’s what peaked my interest to begin with. :)).  I was concerned that he wouldn’t be happy with a girl who was sick, and who will be sick until there is a cure found.

At this point though, I’m extremely glad I met him.  He has been by my side every step of the way.   He comes to damn near every doctor’s appointment, and has only missed one infusion (due to work).  He spoils me when I feel sick, and picks up the slack when I’m down.  When I realized it was time to go to the hospital, he came with, helped me with Noodle (ie: getting my Dad to come get her, packed up her and my stuff, and took care of her for the first 8 hours we were there.)  He listened to me bawl because of the pain, then again because of the heavy drugs (I don’t know, I’m a crier on pain meds).  He listened to the pros and cons brought to us by the surgeons, and he met my doctors.

Most importantly, he sat there and held my hand, only leaving when I made him.  I don’t know what I was so worried about.  Crohns Disease hasn’t made me a worse girlfriend, just like with being a mother, it just made me a little more unique.  Luckily for me, I found a man who loves me for who I am, even if my body is a bit off.  It’s nice to know that I am not going through this alone, that Noodle is not going through this alone.  Not only do we have the support of our family and friends but Ryan.  We’re very lucky.

So worn down I feel today, but all in all I’m not in a horrible mood.  I’m am looking forward to spending time with my kid and the boyfriend this weekend, and just enjoying snuggling in in the morning.  My Crohns may be kicking my ass right now, but that’s not going to stop me from baking cookies with the kid, having a sci-fi marathon with the boyfriend, and enjoying my weekend.  So for now, I’m going to drink this last bit of coffee and wait for dinner to finish.  It smells awesome, and I’m sure since Noodle and Ryan cooked it, I’ll eat every bite.

I hope everyone has a great weekend and enjoys this first couple of days with the Autumn chill and rain.  Happy Friday.

Back in the game.

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I had coffee with one of my good friends last night.  Her and I have been friends for years, we’ve known each other since we were kids back in the old neighborhood.  After I moved out we lost contact for a few years until I moved into an apartment with my ex-husband in Lindenhurst.  One day when I was doing laundry, I bumped into her on the stairs.  The girl I had known from the neighborhood lived in the same building with me.  I was shocked, mostly because it wasn’t a huge building, it only had 12 units in it…. and was one of many buildings.  What were the chances that we ended up in the same place?

She was there for it all.  She was there when I was pregnant with my daughter, her family brought me a gift after we came home from the hospital.  She was there when I was sick that year with undiagnosed Crohns.  She was there to see the fights with my ex-husband, her family was there to call the police for me when he beat me up.  She was there to face him when he blew up.  She was there when I put him in jail for domestic abuse.  She was there when I had to get my bruises photographed while my husband was in a cop car.  And she was there when he was arraigned the next morning.

She was there when I started a new life, when I bought my house, divorced my husband, worked through becoming a single mom.  She played a big part in my life.

Then life got busy.  She moved, I started two jobs, and life went on and we lost touch for a little while.

Then her ass finally joined facebook and we started talking again.  She came over for coffee (like old times) last night, hung out with me, my daughter, and it was like we never missed any time at all.  It was nice talking to someone who knows my past, who is completely on my side, and isn’t only friends with me when it benefits her.  It was nice hearing her family wanted to say hi, and hearing the stories about them and her boyfriend.  It was nice telling her all the stuff Noodle has been doing, and about Ryan.  It was hilarious getting riled up about the same shit we used to.  Before I knew it, 4 hours had passed.

There are plans to continue hanging out.  Continue.

I am happy.

Good friends are hard to come by, and the ones that are there can pick up where we left off with out a blink.  I’m lucky to have her and my other friends in my life, everyone has had such a positive impact on me and my daughter, and I’m grateful for every last one of them.  :)