Christmas with a Flare

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Yup, I predicted it.  My Crohns Disease is fully flaring.  What is it with the holidays and this disease kicking my ass (pun intended)!?  I had started feeling better, then on Christmas eve, I started with some severe cramping.  It had been happening on and off for weeks, so I didn’t think a whole lot about it.  I just made sure that I ate really soft foods, and took it easy.

Christmas day was really rough.  I had to have gone to the bathroom upwards of 20 times.  Anything I ate or drank went straight through me, but the pain was manageable and my parents are familiar with this mess, so I wasn’t bothered by using their bathroom.  On the way home from their house, the pain ramped up again, but I was determined to not end up in the hospital on freaking Christmas.

Got everything in the house, the kiddo in bed, and laid down for some sleep myself.  I actually managed to get some zzz’s, but at some point my daughter woke me up (she woke up at 12pm thinking it was morning).  When I got up to get her back tucked in, my bowels started moving and the pain was unbearable.  I laid in bed for a couple of hours, trying not to cry nor wake up the boyfriend when I clenched up due to the pain.  Eventually I gave up and moved to the couch.

It was horrible.  I had been so determined to have a normal set of holidays, and it all spiraled out of control.  I sent the boyfriend to work, but seeing as how the pain was bad enough that I couldn’t walk, I called off of my work.  I tried to call my GI doctor’s office for the better part of 4 hours, turns out my GI wasn’t in, neither was my normal nurse.  I ended up playing phone tag with her until the evening, where she finally told me to go in for pain management.

So the day after Christmas, I ended up going into the ER and got some fluids (I hadn’t been able to drink since the day before) and some IV pain medication.  They let me sleep for a little while, and gave me a small script for pain meds for at home.

To be completely honest, I’m pretty scared and emotional about this whole ordeal.  Sure, I’ve had obstructions over the years, and that pesky fistula, but this level of pain and diarrhea?  Not since I first got sick 7 years ago.  The pain meds help take the edge off, but they make me incredibly nauseous.  I mean, if I move I have to fight back the gagging.  So I have two choices… extreme debilitating pain, nausea, or diarrhea or extreme nausea.  Peachy.

I just hate this.  I’ve been useless since Thursday night.  Despite the IV yesterday, I’m dehydrated again, so I barely even get up to go to the bathroom.  Either it’s too painful to walk, or I’m too dizzy and nauseated.  I don’t know how to make it through work like this, which panics me too.  I lost a good handful of days to Noodle’s back to back ear infections, and I don’t want to get in trouble for missing more days… even though I can’t help it.  I don’t know.

I’m glad I made it through Christmas, and what a good Christmas it was.  My daughter told me “Mom, this was the best Christmas ever.” and that made it worth it.  However, I would have much rather gone to work yesterday with my new pens and post-its, and counted down the minutes to get out of there instead of being stuck immobile on my couch, fighting tears from the pain.

This disease genuinely sucks sometimes

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

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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.

Ouch and Lucky Kid

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Holy crap. My body just can’t take a break lately, it just keeps beating itself up. 2 plus weeks ago I had strep which was after a Crohns flare. This week? What I thought was a back ache was actually a kidney infection.

What the hell body?! Get your act together, we have lots of plans!

It definitely frustrated me, but the one thing I got out of it was extra snuggles with my short one. Kid snuggles definitely make me feel better.

Today I was definitely jealous of the short one.  The summer camp she is attending this year does two field trips a week. Today they went to the local plant nursery and then for a picnic in the park.  So while I was sitting in my office with the window wide open, trying to get some of the beautiful weather to come in I realized I’d much rather be picking out plants than there. Sigh. Being an adult blows sometimes.

I’m definitely glad I found a school/camp that she loves so much, and the amount of hands on learning is more than I ever remember as a kid. She has so much fun with it too. She was so excited for her field trips this week she set out her clothes the night before and proudly displayed her camp shirt.

Glad my little Buddha is happy.

Chronic Pain and Chronic Bitching

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Okay, so as most of you know I’m having a difficult time with my Crohn’s Disease these past few weeks.  So difficult in that which my body decided to plunk itself in the hospital with an obstruction.  I’m back at home now with a high dose of prednisone and am trucking along with a Crohn’s flare.

Sometimes it’s a little much to deal with, especially when you’re like me and don’t voice pain as much as you really should.  Sure people know when I don’t feel good, but beyond Twitter and The Boyfriend, I really don’t whine much.  I try not to.  I think what it comes down to is that when you’re in an immense amount of pain every day, you just kind of deal with it.  You tend to think that people don’t want to hear about your pain, since you’re in it every day.

So you just begin to live with it and bottle it up inside.

A friend of mine was DXed with Fibromyalgia not too long ago, and her and I have always been able to talk about our health issues together.  She was telling me about how her body hurts and when she was done, she said “you know, I don’t really talk about it with people much.  I’m afraid they’ll think I’m just whining.”  That really hit the nail on the head.   When some one complains about something long enough, you start to get annoyed.  It turns into whining.  So those of us with pain, immense pain and horrible symptoms eventually just shut our mouths.

A few months ago I made it a point to start saying when I really felt sick.  Like oh my god I’m dying sick.  Yet it’s hard to stick with.  For instance, today I was having major problems.  Immediately after my break at work, Crohn’s decided that it was time for me to live in the bathroom.  So I ran past my appointment and locked myself in.  My stomach felt like it was being ripped out for HOURS.  Yet when a coworker asked if I was okay, I just said “Oh, just my tummy hurting.  No worries.”  I had told her my stomach hurt bad yesterday, I didn’t want to continue on about it.

The downfall of bottling it up though can cost you someone else’s feelings.  When you spend your entire day pretending that your body isn’t on fire, and being quiet about it, you start losing the ability to be sympathetic for others.  I have to remind myself that even though   *I* can deal with pain and being sick quite well (hey, 5 years experience, haha) other’s can’t.  So while I can suffer through work with pneumonia, a cold will put others on their asses.  Hell, when The Boyfriend had the stomach flu yesterday, I had to remind myself he’s not used to.  That he felt like crap, that I wasn’t the only one.

Internalizing pain, stress and whatever else doesn’t help anyone.  The question is though, if you have a Chronic Illness or Chronic Pain, and you are honest about it, when is enough enough?  When is it whining?  When do people stop believing you?  Ah, the life of a patient.

 

 

 

I feel like Roadkill [I’m a wuss when I’m sick]

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I am sick.  Like regular sick, not Crohns-sick thank god.  Wait.  When I’m Crohns-sick at least I know how to function.  When I have a good-ole-fashioned cold I turn into a whiny, crying, wuuuuuuss.  Oh my god.  I’m annoying myself.  Please excuse me while I kick myself in the face.

So Monday, on the way home from work I noticed that my throat was sore.  By the time I went to bed that night I had a headache, runny nose and body ache to add to it.  I was miserable the next morning too.  I made it half way through a cup of coffee before I realized that I wasn’t okay enough to go to work.  So at 5:30am I text my boss and let him know I needed a sick day.  I spent the day in bed or on the couch, going in between chills and sweats but sleeping as much as I could.  I went to bed determined that I’d feel better.

This morning I woke up and despite a fever, I convinced myself I could go into work.  I knew the girls in my small office were probably swamped the day before, and would cry if I didn’t come in today.  – I work in a office of 4 people, including myself, 6 if you include our GM and Logistics Manager. The brunt of the Customer Service falls on 3 of us, so when one of us is sick, the others feel the brunt of the work… and it’s painful. – So I took a double dose of DayQuil and put on my big girl panties and head in.  I start work at 7am, and by 9am, my energy reserve died and my motivation to make it through the work day failed.  I ended up in tears in the bathroom.  I told my co-workers and my GM that I needed to go home.  I ended up leaving at noon and coming home to crash.

Leaving was hard, I hate calling off and feel horrible when I have to leave early.  I hate having the other girls take on my work, even though sometimes they only have time to do my install paperwork and phone calls.  I feel guilty when I call off, even if I’m the only one who does.  It’s even harder knowing that I’m going to take a hit in the paycheck.  Sure I have sick-days, but I also have a daughter in school who will get sick eventually and don’t forget the days I need off for my Remicade Infusions.  So ouch, there goes more money.

However, in the past year, and at the example of my co-workers and urging of my family I have learned that I need to take days for myself.  Last year, I took days off for my daughter only, and even then she went to school sick when she shouldn’t.  I feel horrible for that, and I regret sending her to school when she was sick even though her fever was low enough to pass.  I was on my own and needed the money, but the days I took off were for her, or the couple days I had appointments or infusions.  I pushed myself and my daughter way further than our bodies were meant to go.  The result?  Noodle went to school sick and spent days sick instead of her typical day and a half.  Me?  I was sick for WEEKS.  A cold that in my immune suppressed body should have lasted 5 or so days, lasted 3 weeks.  So in my quest to save money and make it to work, I actually ended up taking MORE time off, and when I was at work my work suffered.  Not only did my work suffer, but my family suffered.

So this cold-season, I’m changing things a bit.  I’m taking the day in bed if I’m sick enough to need it, and I’m letting Noodle stay in bed if she needs it.  As Ryan says, if you get it early, you can beat it quick.  We need to take better care of our bodies, so we can do better with the rest of our lives.  So here’s to feeling better tomorrow and a good sleep tonight.

 

I am going to scream if I’m still sick tomorrow.