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.

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Here's 2014!

Here’s 2014!

I don’t know how it’s New Years Eve, I’m still trying to figure out how Thanksgiving already past and where Christmas went.  For Fuck’s sake!!?!  How am I 27?!?  Yeah, you could say I don’t keep track of time very well.  It seems like I just got my divorce and the short kid was just running around in nothing but her diaper and pigtails.  I blinked and short kid was potty trained, I blinked again and I found my current job.  You guessed it, I blinked again and all of a sudden I’m settled down, in a long term relationship, paying my mortgage and trying to figure out how my kid is 6 already.  So it’s about to be 2014, and I’m stuck in like 2009.  W.T.F.

So New Years.  It’s the time of year where people make silly ass “resolutions”, (usually) unattainable goals that they set for themselves that will be abandoned after the first week of January.  I’m guilty of it in years past, I’ll admit that, but it seems like as the years go on, the more I wince in regards to New Years Resolutions.

Now that’s not saying that there aren’t things I’d like to improve with myself, within my life.  I just lost major interest in setting all my goals to begin on the 1st day of the year.  The main reason?  I learned that if you set too many, or a goal that is insanely too high for yourself, it’s so easy to abandon it.  I mean, why not?  I wanted to lose 41 lbs!  I can just start that later… I don’t need to quit smoking, I can start that neeeeext week.  You have the entire year, so why not put it off?  So if there is something I want to change, I start to change it right away, otherwise I’ll just put it off.

A lot has changed these last few years.  I accomplished a lot of the goals I set out for myself.  The one goal, or I guess resolution that I’m working on is *better health*.  I’ve been at it for a couple of months now, at least seriously anyway.  Trying to eat more whole foods and less processed crap.  More exercise, cut down/quit smoking, yada yada yada.  That’s about it for this year.  Health.  This January my health insurance through work kicks in ( I can finally afford it – and not get denied ), so I will be able to see my regular doctor, gyn, and GI when I need too.  Eye Exams and finally getting to the dental work I’ve put off will be getting done too.  This year, just like these last few months, is dedicated to taking care of myself, more importantly setting a good example for my daughter.

Whatever.  I’m going to go pour myself a glass of red wine then start dinner.  These steaks won’t grill themselves.  Happy New Years everyone, take it a little easier on yourselves this year and make sure you aren’t losing too much time making yourselves miserable.  Good night!

 

Oh Look, it’s 2013.

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It’s New Year’s Eve.  Again.  You know, I think I’m starting to get old, I didn’t even realize it was New Year’s Eve until I hopped on the Book of Face this morning.  Crap.  How the fuck is it already almost 2013?  I just now started writing “2012” the first time on my paperwork at the office.  Damn it all to hell, now it’s time to start over.

This year has just flown by, maybe it’s because I AM getting older, maybe it’s just because I’ve been busier this year than years past.  I don’t know, but it seems like just yesterday the leaves changed color, last week, we had the AC on.  I blinked and Christmas is over.  I remember being a kid, and the entire year seemed to crawl by.  Crap.  Maybe I am getting old.

So every year, at year’s end, we all tend to think about what we’re grateful for.  We think about what we could do better in the next year and make all of those stupid resolutions.  I’m no different, this year has taught me how strong I really am.  I’ve gone through some tough shit this year and grew because of it, I closed one chapter of my life and started on a brand new (scary as shit) one.  My co-worker said it best, since I started last year, I’ve done a 180 and you know what?  I like it.

When I started making changes in my life, I thought it’d be grueling, that I’d hate it.  I dreaded ever single step I took, but I found out that each step I took made me stronger.  I like how things are ending up, life needs a lot of work yet, but I’m headed in the right direction.  This next year?  I hope it’s more of the same steps.

So resolutions.  I should make some.  I usually never do but hey, what the hell.

1.  Learn how to balance being a Mom with being every-fucking-thing else.  In 2012, I focused on fixing my “mom-skills” and being a better mom.  It’s been awesome, and Noodle and I have grown ever so close.  When you’re a “Single-Mom” or when the father’s out of the picture (even if he is is calling again – long story), every decision you make revolves around your kids.  Hell.  Normal moms often are guilty of “Well, I really want a latte, but I’m sure that $2.94 can be used for something else, (insert random kid’s name here) really wants (insert random kid item here).” In 2013, I need to learn how to keep working on my relationship with my daughter, helping her thrive, but I also need to learn to take care of myself.  Balance, I do not have it.  Haha, so I’m going to focus on balance.

2.  Trust.  In this next year, I want to learn how to trust people again.  2012 had me working on forgiveness.  I spent all year trying to let go of grudges, and accept some of the blame for my problems.  I forgave people that royally fucked me over, and people that walked out of my life.  I stood up and took the blame where it was due.  I forgave others and I forgave myself.  Now I need to work on my trust so I can work on relationships with people who are close to me.  I’ve already started that and grown closer with my parents, but now, I need to learn how to open my heart to my friends.  So trust it is.

3.  Enjoy the Small Things.  So on this Let’s-Change-My-Whole-Life trip I went on this year, I became pre-occupied with my To-Do list.  Which is no different than any other year.  I’d accomplish one thing (whether mental, relationship-wise, work, or house) and immediately focus on how much more I had to do to accomplish the next obstacle.  I spent a lot of this year worrying.  I want to spend more of next year enjoying the small things I took for granted last year.  Iced coffee by my garden, quiet moments to journal, nights out to dance.  You name it.  I’m starting early.  This morning I got up and started getting overwhelmed by my to-do list.  After Ryan went to work, instead of instantly getting moving, I sat down at my desk and enjoyed my coffee.  Now writing.  The laundry waiting to be folded can wait a little bit.  Mornings with just me and Noodle are only once a week, and she’s occupied with that horrendous furby thing so I have time alone.  (Btw, I didn’t think furbys could get any more creepy… I was wrong, 10 years later and they now practically give me nightmares.) So.  Yeah.  I will enjoy the small things.

 

So it’s about to be a new year, 2013.  I’m excited.  I just know though, that I’ll blink and it’ll be New Years Eve again.  So here’s to my best effort.  I hope everyone has a safe new years.  I’m staying in tonight, so those out there, if you drink please don’t drive, be safe, and I’ll see everyone next year.  Happy Holidays.

A New Shade, a Clean Slate, a Glass of Wine. Wait, What?

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So it’s the New Year.  2012.  We (meaning the boy and I) brought it in in a rather tame way.  We stayed up and painted my house, okay, well I painted a little bit.  Oh!  I taped too!  You know like trim?  So yeah, mostly, we just stayed up talking, him painting and me pretending to not check out his ass every time it hung out of his pants.

I think it’s fitting, I do.  Well, his pants on his ass?  Yes, but not what I’m talking about.  Starting the new year with a clean slate.  Or in this case, a clean, re-organized, re-arranged, freshly painted house.  Starting the new year with the boyfriend, working to make it that way.  Starting the new year with one of the people who made last year so fantastic despite the sickness and court.

I am simply amazed.  (No, I’m not bragging.. honestly just writing about it.)  I haven’t been with someone who is willing to do all that this man does.  Helps me paint almost my entire house in 2 days, cleans, is currently cooking us dinner, and has stood by and held my hand during every infusion so far and most of the bad days.  I think I lucked out folks.  Finally after many failed relationships and a fucked up marriage, I may have got one of the good ones… bonus round?  I don’t have to hold him against his will.  Much.

Besides the boy, this year started out on a good foot in numerous ways.  I am still working at the job I love, with people I only want to moderately throat-stab.  I still have my good running car and am done with the dui court dates (no community service, just one more class to go to).  I have my family who loves me and supports me, and I have my little Noodle who is excelling in preschool and life (with a bit of turbulence) despite her scum bag dad disappearing early last summer.  I have my wonderful, now, beautiful house which is all mine (and it’ll take prying it from my cold, bony-ass fingers to get it from me).  Plus my Crohns is finally going into remission.

For this year?  Sure, bet your left ass cheek I have goals… all of which I’ve started on.

-I want to raise my credit score… I made some stupid credit mistakes (only one left to fix) and have to deal with Tim dragging my credit through the mud.  So I started paying my debt this last check.  :)  I want to improve it enough so I can finance something for myself and build it some more.

-I want to really buckle down on this house.  The wood floors are done and painting is now done.  Next on the list, re-hab the whole bathroom, some extra painting and working on my yard/patio.  Back to the original plan of making a good chunk of profit when I finally sell this house (assuming the economy doesn’t crash, or the world ends or Britney Spears finally quits the drugs and gets her kids back again. What?)

-I want to work on the relationships I already have.  The boyfriend, my family, friends and of course with my little Noodle.  My Noodle is my world and I’m the only parent she has… and you know what?  I’m a pretty damned good parent, doing this on my own.  )

-Last but not least I want to get a handle on my life/health.  I’ve improved my diet and can’t wait for spring to hit the forest preserves again.  I am loving my body despite what this disease and all the associated medications have done to it.

Last year ended on a great note for me, I have wonderful people by my side and as the trend continues, life is on the up and up.  So here’s to the New Year!

[oh btw.  love you all and thanks for reading]