Chronic Illness Can Go Kick Rocks

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Today was a rough day, as they all have been for a couple of weeks now. My Crohns Disease seems to have left the Remission parking space it had occupied for almost a year.

Don’t get me wrong, I had a few “mini-flares” but nothing longer than just a couple of days. This weekend though, it progressively got worse and today I called one of my doctors. I was lucky to get in to get some IV fluids, potassium and steroids, and I’m hoping that will kick me back into remission. We shall see I guess.

It’s like my body just wanted to remind me that my Crohns is still around, I’ve been dealing primarily with my heart crap, I almost forgot about IBD. So there I was, getting back to normal life, and my intestines nope-ed right the hell out of normalcy.

Ah well, everything else in my life is going pretty nicely. If anything, I’ll just use this as an opportunity to appreciate what and who I do have in my little world. Nothing like a shot of reality to help out with that.

Here’s to another 30 years pushing forward! Happy Birthday to me! Last day of 29 will be spent reflecting. :)

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Resolution: Stand Up to Medical Bullies

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I am not an easy patient.  Far from it.  I insist on researching each medication doctors want to put me on, I refuse surgery if I don’t see it as needed, and I refuse to let up or give up.  I am pretty much a nightmare to hospitalize, and even worse in ERs if I’m not treated right.  I question each diagnosis, each lab report, and each cat scan finding.  Hospital nurses usually love me, mostly because I knock the pompous doctors down a notch… and involve them in the most horrendous jokes you can even fathom.  Nurses in offices?  Usually don’t like me too much, as I don’t take orders well if I don’t agree with them.

I’ve been “chronically ill” for 7 years now, it’ll be 8 in April.  6 of those years I’ve been diagnosed as having Crohns Disease.  I know my disease fairly well, I know my body even better.  I can tell you if the pain I’m having is inflammation, an abscess, or an obstruction.  I can tell you if an internal fistula is open, or if it’s healing.  I can tell you pretty much anything about my disease, I can also tell you almost everything about the medications I’m on.

However, over the past couple of years, I’ve become… mentally beaten down.  Wary.  Tired?  I’m not sure.  All of a sudden, instead of questioning everything, I started rolling over.  Instead of chewing out surgeons, I cried and sent them out of the room.  Medication I didn’t agree with?  I took it for months before I stood my ground and threw the pills out.  I’m letting others control a major portion of my life with out forcing them to listen to what I have to say about it.  Just the other day, I rolled over when a nurse pulled an ego-trip and lectured me.  I rolled over and took it… for a while.

This most recent Crohns flare, is just that.  I have a new pocket of inflammation that has been acting up on and off since May.  I was hospitalized for it then with a partial obstruction and pain… the following catscan found it.  Christmas Eve, the pain got really bad.  Christmas Day I was living in the bathroom… Christmas night I stayed up in fetal position because the pain kept me from sleeping.

I called my nurse, and got one I normally don’t deal with.  She was very nice and suggested I go to the ER for some pain relief.  I agreed as I didn’t have any pain medication at home.  I hopped into the ER, the ER doctor (one I’ve seen several times) confirmed that it wasn’t an obstruction and gave me a couple of doses of pain killers and fluids.  Wrote me a script and let me go home.  The next business day I called my nurse back, I needed to make an appointment and ask for something for nausea and pain.

My normal nurse was back.  She went through my medications and started lecturing me about going off of one of them.  I informed her if she answered messages, she would have had a say… but she kept going.  “Well maybe if you stayed on xyz, you wouldn’t be sick.”  I shut my mouth even though I just wanted to yell “I was still sick on xyz, except for then I was losing my hair, dealing with fatigue and insomnia (more than usual) and lack of appetite!”.  I kept my mouth shut.

She kept going on and on.  I cut her off to ask for something for pain.  She refused to give me anything (apparently about half of all GI offices don’t write narcotic scripts), not even drugs previously prescribed by her office.  I asked her who I should call for pain medication, and she told me to go to the ER.  “Umm, I went on Friday.  I can’t go in every day, I have to work too you know.”  She didn’t know.  She had no idea.  She didn’t even look in my chart.  I asked her again who to call, and she wouldn’t refer to me anyone.  “If the pain is that bad, go back to the ER.”  I got off the phone in tears.  All I knew is that I had a bad Crohns flare, with little medicine left and no relief in site.

I made some calls, and someone called my doctor’s fill in for me.  He knew right away that I had already been in the ER, and after small discussion wrote me 3 prescriptions…. and instructions on what to do if the pain got worse, obstruction, blah blah blah.  So to sum that up, a doctor I’ve never seen… who looked at my chart once, trusted me and respected me more than a nurse I’ve been working with for 6 years.

On Monday, my doctor comes back, and I am to call him to discuss my options.  However, I know the nurse has already filled my chart with crap about me quitting one medication.  I was dreading talking to him, I had cowed and taken two different medications this year that I didn’t agree with.  I didn’t want to be bullied into it again.

It finally dawned on me.  I was letting doctors bully me.  I had let a surgeon make me cry.  I had let a nurse make me cry.  I had taken the wonderful care from the wonderful ER doctor’s and nurses, only to be made to feel uninformed and dangerous by one nurse who hadn’t even looked at my chart.  I had agreed to take medications I had notes against in all charts across all networks.  I had stopped standing up for myself and my body.

So that’s where my New Year’s Resolution comes from.  I am going to stand up to my doctors, I am going to tell that nurse off.  I am NOT going to be talked down to because I don’t like taking 2 medications out of god knows how many.  I am NOT going to be bullied because I don’t agree with a certain course of action.  I am in charge of my body and the decisions that swirl around it.  This disease is part of MY life, for the REST OF MY LIFE.  I have to own it, be informed, and make informed decisions.

Having a Chronic Illness is not easy, it’s actually quite terrifying at times.  It’s easy to get down when you’re feeling sick, it’s easy to feel defeated.  It’s heartbreaking to look at the rest of your time on this earth thinking “so this is how it’s going to be?”  We as patients, we as people need to take control and steer our own lives, which includes or illnesses.  If your doctor doesn’t agree, there’s always another doctor, with another opinion.

In 2015, I will not be bullied.

“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.