Strawberry Ale

Standard

Saturday night, day one of a much needed three day weekend.  Monday, I am off work… initially it was out of necessity.  It’s Columbus Day (aka: lets-celebrate-genocide-day), so the kid doesn’t have school… and on the major school holidays, daycare is closed.  So I requested the day off, because being myself, I don’t have many other options for childcare.

Either way, as the days counted down to this weekend, work got more and more stressful.  Each day that inched by, the more depressed I got.  The more anxious, the more upset.  It’s just been… hellish, especially after working late nights for god knows how long.  Friday, I lost it.  I finally found out what burnt out feels like, I thought I had experienced it before, but quite honestly I hadn’t.  Every little thing was setting me off into tears, I felt like I was on the borderline of an anxiety attack all day.  (Hello, new prescription.)  It was one of those days where I had to go outside, and solidly convince myself that deep down I *do* like my job, and that while my paycheck is no longer 100% needed, I like having that income.

It was bound to happen.  I knew it was coming, and quite frankly, I’m surprised it came with tears instead of screaming and storming out.  Friday straight up blew.  However though, when I’m stressed I tend to say what I mean, instead of sugar coating it, so I got some of my thoughts off my chest.  Despite the tears, at the end of the day, I actually felt better.  On the drive home, I thought about what I wanted out of life, out of work and out of my home.  I put some priorities in order, and let me just tell you this: my family comes first.  Hearing my boyfriends views on it, and knowing I have his support regardless of what I do with work helps.

Cue: Weight off my shoulders.

So, this weekend, I’m taking for my family.  This Monday is a Noodle+Me day.  I’m enjoying every minute of it.  I know that I have some work I really should get to, especially with corporate coming in next week.  This weekend though?  I’m not doing it.  I’m not checking emails, faxes, lates or anything.  I need this, and I need time.

Today wasn’t quite fun filled with the morning dentist appointment, but watching scary movies with the short one this afternoon was nice.  Right now, I’m relaxing with a Strawberry Ale (mighty tasty I might add) and writing.. while fending off complaints from the child that she lost her charger for her tablet.  Tomorrow?  I don’t know what’s going on, but I know I’m spending my morning in bed until I feel ready to get up… and the day?  Relaxing.  Monday?  I think a bike ride with the kid, and lunch out.

Moral of the last week (year)… family and self comes first.

Advertisements

“You’d rather whine and cry about your Crohns…”

Standard

As pretty much anyone who reads this blog knows, I have Crohns Disease. I have been diagnosed for 6 years, sick for 7 (got sick the day after my daughter was born). There is a brief description of it, but if you do a quick google search for “Crohns Disease Forums” or “Crohns Disease Blogs”, you’ll find some more. Crohns Disease is one of many considered an “Invisible Illness”, part of the IBD family along side Ulcerative Colitis. A lot of the time, someone with Crohns looks pretty healthy, accompanied by “you’re so thin, you look great”! That’s because Crohns Disease is internal, you won’t see any gaping flesh wounds or casts around an apendage. It’s all our insides trying beat us up.

It’s thought to be an auto-immune disease. Frankly, our immune system decides that it hates our literal guts and starts attacking. The outcome is severe inflammation which leads to ulcers, fistulas, bleeding, malnutrition, severe pain and a host of numerous other symptoms, some are life threatening. There is no cure as of now, so those of us with IBD are stuck on long term medications, most of which have some very un-friendly side effects. The problem is, is that because there is no cure, the best we can hope for is “remission”. Remission doesn’t mean that the disease has gone away, but that there are no current symptoms. Some people are lucky and find a drug that works for decades, many of us aren’t so much. So that leaves us with chronic pain and symptoms that aren’t so easy to talk about.

I use my writing as a way to vent about what I have to deal with, it’s one of the only ways I can think of. I figure, if I open my mouth and tell people what I (and other people) deal with living with a life long disease, it’ll give someone who needs someone to relate to a hand. Maybe if I open my mouth and share my story, or tell people when I’m having a bad day, maybe it will give someone else the courage to stand up and say “Hey! I feel really sick! I need support!”.

It really is hard though, for many reasons. I know one of the biggest reasons is that I don’t want to sound like a complainer. 90% of the time, I’m in pain, and in the bare minimum, I’m uncomfortable, yet to most who ask me I’ll tell you I’m fine. If you feel like crap every day, and say so, who is really going to believe you? Who is going to want to listen to you complain day in and day out, regardless of whether or not that’s your daily life? So I shut my mouth. It took *years* for me to start telling people that I don’t feel good. Even now, 7 years after getting sick, I still only tell people I’m having a rough day if I’m feeling *really* bad. Even then it’s confined to the internet or to a close few friends or my coworkers. When you’re sick a lot of the time, your worst fear is becoming a burden on your family or stressing them out. I used to be terrified of that, I did. I still don’t tell my own Dad when I’m feeling really sick or yucky, just because I don’t want to worry him. I don’t want to inconvenience my family, so I keep my mouth shut and deal with it. The only times I’ve asked for help is with the handful of hospitalizations, where I had my Dad watch my daughter, so she wouldn’t have to stay with me. Even then I felt horrible, even though I know I shouldn’t and that my family (at least my parents anyway) will always be there for me.

The downfall? If we don’t open up to each other, to our friends and family, we isolate ourselves. We end up suffering in silence and alone. If we don’t say something, anything about how we’re feeling, no one will know what we’re going through. How can one gain support if we keep our mouths shut? It’s the most horrible thing to be in pain and feel like your left all alone to deal with it, day in and day out. No one should have to deal with it, regardless of the condition.

However, as I learned today during a fight with a family member, it really does backfire. Sometimes, even when you just tell your family, and only when you need to, when you post online, just to get some kind of feeling that someone cares… it still will bite you in the ass. (haha, pun intended)

So today, while fighting about something completely unrelated, my own family member told me all about “what I’m putting my family through” because of my Crohns. Mostly because I opted out of a major life changing surgery (on the advice of a surgeon I’ve seen). “You’d rather whine about your Crohns, about how hard your life is…. (insert insults about me never finishing college – accounting is not my thing – and working in the stone industry) … Stop whining about how hard your Crohns is when you don’t have the nerve to get the surgery that you need (or don’t need, but she never asked about that). You’d rather put your family through the stress of scrambling to take care of your daughter.”
So let me go on the defense here. While we’re fighting about life choices she *MADE*, I get shit thrown in my face about a disease I have no choice about? I get shit because I made an educated decision with the help of my SURGEON to not have surgery yet? Put my family through the stress of scrambling to take care of my daughter? Excuse me? I’ve been hospitalized 5 times in 7 years, not too bad. Once when I first got diagnosed, and the last time being for the new inflammation… which has absolutely nothing to do with the surgery I had discussed 2 years ago with my surgeon (again, she would know if she asked). Yes, I most likely inconvenienced my family, but you know what? That’s what family is there for. To take care of each other, especially when one is sick. This family member wouldn’t know about that, since she stepped in for a sleep over 3 times since I’ve been sick. That’s besides the point though.

That attempt to shame me for something I have no choice over is why we keep our mouths shut. I don’t say a whole lot about how I’m feeling, I’m most active online for awareness, and yet I’m still “whining” about how hard my Crohns is? I’m (not) sorry that I told someone about the multiple obstructions I’ve had, or the fistula I had, maybe I shouldn’t have (definitely should have) told someone that I’m in a lot of pain and not in the mood to go out the bar. I certainly should never (most definitely) have said “Hey family, I’m hospitalized because my disease has stopped responding to medication and I have to try a new drug.” I should have never said “Dad, I’m scared..” because obviously said family member thinks that’s whining.

THAT is exactly why I open my mouth. Why I post on my blog about my IBD, why I spread awareness in anyway I can! The shame that she attempted to pin on me for something completely out of my control and most definitely not my choice. No one with a Chronic Illness, whether it be IBD, Lupus, MS, Fibro or anything should have to feel alone, none of us should have to feel like we have to suffer in silence.

So you know what my fellow IBDers, my spoonies, and my friends. I’m going to go all high school on you for a second. FUCK the HATERS. Tell someone, tell someone you’re sick. Tell someone you hurt! Tell someone if you need support! You need it! You most definitely DESERVE IT. Anyone who ever tries to tell you that you complain too much, or whine, or are inconveniencing them, don’t deserve your time much less your love. No one has the right to shame you for how you feel or any medical decision you make regarding *your* disease. Stand up! SAY SOMETHING! No one will know unless we open our mouths.

We don’t have to suffer alone, and those who think we should, aren’t worth the breath they use to speak.  Like my 7 year old says “Mama, I love you no matter what, even if your sick or if your grumpy.”

 

Sidenote:  I wasn’t originally going to post direct quotes from the fight I had, but the more and more I thought about it, the more and more I wanted to write this blog.  What my family member said to me is the very embodiment of why many of us don’t complain when we feel bad or sick.  I want people out there to know that yes some people are shitty, but not everyone, and we all deserve support.  So please pass around, and more importantly, be there for each other.  We’ve got to be honest about our lives, and our pain, and in the meantime, in the face of people like I had to deal with earlier, we’ve got to be here to support each other.

It’s been one year. (Written Earlier)

Standard

Right at this moment, I’m at Highland Park Hospital.  It’s that time again, time for my Remicade infusion.  I come in every 8 weeks for a few hours, get my medication and I’m out!  It’s pretty boring, and I usually have to take off of work to do it, but it helps.  My Crohns Disease has been flaring for the past few weeks, but nothing too major, so I am still pretty grateful for my infusions.

So here I sit, frolicking around the internet while the boyfriend watches Pineapple Express on his phone.  I lost interest as soon as he said the title, so in go my earphones and on goes the music.  So as I was mindlessly searching the internet for something I didn’t already know, I realized something.  One year ago, I was here too.  Except one year ago, I was admitted and here for a week for a bowel obstruction.  I had been facing surgery and was pretty scared, that and bowel obstructions just generally suck… you know, excruciating pain and puking and all that nonsense.  So it’s been almost exactly a year, I’ve managed to keep my ass out of an admission for a whole year (minus a few overnights).  I’m pretty proud of this… I’m taking it as a big giant Fuck You Crohns Disease!  

It’s pretty baffling to think that I’ve been living with Crohns Disease for 4 years already.  Some days it seems like it was just yesterday that I first started showing symptoms,  other days it seems like this has been my life for as long as I can remember… those are the days that I forget what feeling perfectly healthy feels like.  After four years though, I’ve learned that it is something I can live with.  It’s not the end of the world.  Yes, it sucks, yes I feel like I got the short end of the genetic stick, but life goes on.  Through the past four years I’ve learned that life is what you make of it.  Simple as that.

I’m luckier than some though, while my Crohns is not in remission anymore, my symptoms are still not quite severe and I can still function with a little bit of effort.  While my disease could progress much farther and it is working on it, I have a wonderful doctor and very supportive family.  When I need help, all I have to do is ask, when I need a should to cry on, I have one.  I am lucky, and today is one of those days I am thanking my lucky stars.