Wednesday, September 30, 2015

The Game of Perfection

My life is like a delicate game of Perfection. It takes me forever to get all the little pieces of my life in order and put in the right place, but once the pieces are all where they belong, life is worth living.  I want to be alive.  I want to see what each day brings and I'm basically happy.  All is right with my world.  Depression isn't as big of a deal.  I can handle pain and sickness better.  I don't worry so much and I'm less anxious about everything. But inevitably, in as quick as 30 seconds everything in my life explodes. All the pieces go flying and I have to scramble to get them back where they belong.  The more often my Perfection game explodes, the longer it takes me to find the pieces and put everything back together.  And the more I have to continually play this horrific game of Perfection the less I want to. It's not fun.  I'm forgetting where everything goes and why it matters so much because it's all just going to blow up again anyway. 

Sunday night my stomach started hurting in a gnawing, burning annoying kind of way.  It had been feeling that way for the previous few days off and on but Sunday night it just wouldn't stop.  Through the night it continued to wake me up and I had a few bouts of diarrhea which didn't necessarily hurt anything - but it definitely didn't help anything. Early Monday morning I placed a call to Dr GI and left a message for further instruction and I took a pain pill that, as you'll remember, Dr GI had just prescribed me for my most recent flare going on in my colon.  I was also taking the Entocort and Pentasa again.  Remember, the CT scan from July that showed the inflammation in the colon and with my current symptoms and all Dr GI decided it was a 'member.

About an hour and a half after took the pain pill the pain had not stopped or even eased up at all.  In fact, it was a little worse.  I felt horrible.  I still hadn't heard anything from the doctor so I knew it was time to call my husband.  I had to go to the ER.

Well in true ER visit form, it sucked.  I was at the ER, I was in pain, every single person that came in had to ask me a million and one questions fourteen times because no one ever reads the damn chart or talks to each other.  Then they did another CT scan test like I had just had done at the end of July when I was there.  They gave me some pain meds - nothing.  Still in pain.  They gave me a different pain med - it helped.  Not a lot, but it was something.  During all of this I spent at least four hours explaining to the various MDs, DOs, Hospitalists, Interns, Attendings, Nurses, Janitors, and general administration the essence of Crohn's disease, how it has affected me, my personal history with it, the various medications I have been on and what my GI was currently doing to treat the flare up in my colon that he said I was having based on the CT he looked at from July taken at the same ER that I was at currently. Frustration doesn't begin to cover the range of emotions I was feeling.

All my lab work came back fine.  My CT scan showed some inflammation in my colon. They didn't use contrast on this one like they one they did in July but whatever they saw they wanted to put me on IV steroids.  It took forever for me to convince them that they needed to contact my regular GI because I cannot take Prednisone anymore due to what happened when I was on it in 2009.  See THIS BLOG POST as I describe some of the side effects I was having from the Prednisone and after much discussion with Dr GI at that time, it was determined I shall never again have to be on Prednisone.  However, the current doctors at the ER didn't read the script.  No one was listening to me. 

After several hours of waiting, it was determined that I had to be transferred to a different hospital because my GI didn't have privileges at the hospital I was at. (even though they are all owned by the same Super Corporate America Company that thinks they know about how to run healthcare better) So I got to ride in an ambulance to the next hospital so I could be admitted for pain management and observation and more testing and torture.

Once I got to the second hospital, a slew of doctors and medical people came in.  One right after the other.  They were all literally hanging outside my door waiting for the next person to be done.  Every doctor had to come in and mash on my stomach and listen to my heart and lungs.  Breathe deep.  In and out.  Where does it hurt?  When did it start?  What does it feel like? Blah, blah blah.....   Eventually they decided to give me some pain and nausea meds and they put me on IV Prednisone. They slipped that in there before I knew what was happening.  The GI who was covering for my actual GI wouldn't come see me until the next day and then he would decide what to do.  I was assured this "one small dose" of steroids wouldn't hurt anything despite my not wanting steroids.

SIDEBAR:  I take a lot of medications.  I am strict about how I take those medications.  I don't like it when people fuck with my meds.  Every time I go to the hospital they fuck with my medication.  They give me my day meds at night and my night meds during the day.  They never give me enough of my medication for the acid reflux issue I have that feels like acid is burning a hole in my throat because the recommended dosage isn't what I take - I need more.  Even if I tell them they have everything mixed up and I take certain things at certain times and take more of certain meds than recommended because that is what works for me and my doctors all know this - NO ONE EVER LISTENS and they just do their own thing.  I was already irritable.  Now they are fucking with my meds and they had me on steroids.  Can you hear the Perfection pieces starting to pop?

The next day after even more doctors came in and asked all the same questions again and again and mashed on my stomach again and again no one really said anything to me.  I mean, I literally had one head doctor lady who didn't seem to know anything, two other doctor people telling the head doctor lady about me and two med students standing there doing nothing.  They were all talking about me but no one was talking to me. I asked questions and the only thing anyone ever said was they wanted to wait and talk to my GI doctor - who wasn't even my GI - it was the stand in doctor and he still hadn't come to see me yet.   The general consensus though was that my Crohn's was flaring and needed treatment.  OK.  I knew that.  I was in a bad flare.  I got it.  I've done that before - I can handle it.  All this made sense. Until the nurse happened to offhandedly mention a few hours later that I needed to start my colonoscopy prep at 5pm that night because I was scheduled for a colonoscopy at some unknown time the next day.

I hadn't eaten for two days and counting.  I was in pain.  I wasn't even having that much diarrhea because of the lack of anything in my system.  I did NOT want a colonoscopy. I could not endure the prep - and they were discussing enemas.  OH HELL NO!  Dr GI just did a colonoscopy in January.  The CT scans proved it was my Crohn's flaring.  I didn't need a colonoscopy.  And why the hell didn't anyone actually come and tell me that was the plan?  Anyone like one of those eight million doctors that came and mashed on my stomach and listened to me breathe?  I have to have special considerations when I have a colonoscopy.  I cannot take pain meds while I'm prepping because I will most definitely shit all over myself.  I was in the hospital to get said pain meds because my pain was that bad but now I couldn't take them?  Why were they doing this?   Why wouldn't anyone talk to ME?  I wasn't consulted through any of these decisions.  I demanded to see the GI and I wasn't nice about it.  I was already not getting my meds normally so my anxiety was reaching a level that was dangerous.  I could feel it.  I was seething. 

Stand in Dr GI finally came in and sat down and we talked.  Enemas were immediately taken off the table.  I would be given the proper sedation I needed and I could only do half the prep because I didn't need all of it.  He knew I was pissed.  It didn't matter.  I was having a colonoscopy the next day.  I was so exhausted it was hard to continue the level of upsetness that I had reached.  Anxiety took over from there and I just began to panic.  I was awake all night because I was afraid if I slept I would shit all over myself because of the prep.  I hadn't slept the night before either because of the pain and being in the hospital sucks.  And the night before that I didn't sleep much because I was at home dealing with the pain.  I was beyond exhausted and beyond anxious.

The colonoscopy was done the next morning.  It showed nothing.  No Crohn's.  What?  The doctors wanted me to have another CT scan with contrast.  The kind you drink that is like a laxative.  Like the laxatives I had just endured the night before for the colonoscopy prep.  Like I needed anything else to make me poop.  I was hurting.  I couldn't have the pain meds and more laxatives.  I reached a point where I just couldn't do anything else.  I was done.  I quit.  I mentally checked out. 

Here was my thinking:  If they did more tests they weren't going to show anything anyway.  There is no Crohn's.  No reason to be on the steroids (which I later found out was 40 mg of Prednisone they were injecting into my IV at least twice a day but I think it was really three times a day)  I was NOT going home on Prednisone.  I didn't need to be on anything for Crohn's because they couldn't find it - again.  No reason for the pain I was having.  No reason to go through more tests.  No reason to be in the hospital.  No reason to live.  No reason.  I have played this "I feel horrible and I'm having pain and diarrhea and all the other symptoms of Crohn's disease without having Crohn's disease" for years now.  Not weeks, not months but YEARS!  Years of my life wasted on being sick with no cause.  Every last piece of the Perfection game had popped.  The pieces were everywhere.  All I could do was cry.  I just cried.  Hysterically.  For hours.  The gang of doctors and students came in my room to try to talk to me finally, but it was too late.  What happened was not one of my finer moments.  This picture sums it up.  I'm pretty sure at least one of the student doctors is still rethinking their career choice.

After the nurse and several other doctors - even a resident doctor that had nothing to do with me or my case - offered me an Ativan and some time to "calm down and make a rational decision when I wasn't so upset", it was settled that I would go ahead and have the CT scan with the contrast and it would be later that day.  Except it wasn't.  After waiting and anticipating for six hours I was told that two techs in the CT department went home sick and I wouldn't be able to have the test that day after all.  I was allowed to finally go home and follow up with my own GI.  They realized the CT scan was pointless, I guess, and I was supposed to continue the Crohn's meds I was taking before I went to the hospital.  No changes. Let's pretend like nothing just happened.  I went home.  I was still in pain.  I was probably in more pain because now every piece of my Perfection game was out of it's perfect little place and some of them weren't just out they were lost.  And lying in a hospital bed for three days caused my Fibromyalgia to rear it's ugly head.

I called Dr. GI the next morning.  After review of what took place at the hospital I do not have active Crohn's.  I was supposed to continue the Pentasa but not the Entocort.  Did I mention I received at least six doses that I know of for sure of 40 mg of Prednisone via IV in the hospital that I was now stopping cold turkey?  I'll be ok - no one seems to be concerned about that.  (FYI: I'm still NOT ok)

So what now?  I honestly don't know.  I don't know what I am going to do.  See, those pieces of the Perfection game, they are all popped out.  There are some that are gone forever.  I lost them at the hospital.  I lost the ones that were hope, meaning, faith, fighting and caring.  I don't care what happens to me anymore.  I don't want to fight anymore.  I've said before that I was done and then somehow found some inner strength to get through.  But now, now is different.  I'm really done. There is no more inner strength to draw from.  I don't care anymore.  I'm done with medicine for problems I don't have.  I'm done trying to get people to listen to me.  I'm done fighting to convince people that there is something wrong when clearly, there isn't, or it would've been discovered and treated by now.   All this fighting I have done for all these years has not been worth it.  I haven't won anything.  I haven't been given a break.  My family has gone through hell.  My body has gone through hell. I am emotionally in hell.  No one would expect me to endure abuse this long.  Why do I have to continue to suffer?  With no reason, no cause, no relief, no cure?  I'm tired now and I just want to go home. 


Thursday, September 17, 2015

Being a Sick Person

I've not been feeling well lately (I know, big surprise) so after an ER visit, a CT scan and a trip to Dr. GI, it was confirmed that my Crohn's is flaring in my colon again.  I'm back on Entocort and Pentasa and Dr. GI said if I'm not better in a month we'll have to talk about an anti-TNF drug like Humira or Remicade.

I've felt horrible for so long but it's always been "nothing" because all the tests showed "nothing" being wrong.  Now all my tests are showing stuff wrong and it's becoming real (to others) that yes, I am an actual sick person.  It's not in my head.  I'm not making it up.  I'm not crazy!  The way I feel is finally justified. And that's how I felt for the first few moments.  But now reality has set in and I am kinda freaking out.  I'm sick. I have something wrong with me for real - a disease.  I have to take a lot of medications and they have big scary names and even worse side effects.  My body is going to get worse before it gets better.  I could have complications.  I could need surgery again.  I'm scared.

Sometimes I spend so much time trying to be the perfect Crohn's warrior.  The activist who has it all together.  I've been there, done that and made it through and so can you!  However, I'm back there again and I don't know how to process the feelings of being a sick person who is actually a verified sick person with real tests and proof.  I fought for so long for someone to actually listen to me.  Pooping as much as I do isn't normal.  The pain I have isn't normal.  And I was right.  So now what?

Sunday, August 23, 2015

Team Challenge

Hey let's all help out my friend, Christine, with her Team Challenge 2015 Rock 'n Roll Las Vegas charity event to help benefit Crohn's and Colitis!  Here's her link.  THANKS EVERYONE and THANKS CHRISTINE!! 

Saturday, August 15, 2015

Pushing for Fall

I'm pushing for Fall.  I like the weather better in Fall.  The air is crisper, the foliage is prettier, sweatshirts can be worn, and it means that cold weather is just around the corner.  I'm totally over summer.  I hate the heat.  I hate to sweat - especially because I wear glasses and that just sucks.  Besides, school has started so that means it should be cold.  That's my thinking anyway.  So that's that.  I changed the blog to be Fall-ish.  Enjoy.

Wednesday, August 5, 2015


My sixteen year old daughter had to show me how to use the computer I've had for over six months now, but have yet to figure out how to open the Paint program and save a picture.  I used to be the one floating around an office showing everyone how to use their computers, finding the shortcuts and fixing software issues. I used to be the knowledgeable one.

I don't understand music anymore.  It all seems to be repetitive and annoying noise.  There are about seven words total in songs now and they say them over, and over, and over, and over to a beat that you can never quite get out of your head. And somehow, it goes double platinum in a week.  I used to love music.

I read through the Entertainment news and I do not recognize over half of the people's names.  And it isn't like once I read the article it jogs my memory and then I figure it out.  I literally have no clue who these people are, what they do, where they came from, or why they are so important to the general public.  As far as I can tell it's just a bunch of rich people with rich people problems that I will never be able to relate to.  It must be tough being a bazillionaire!

People fight with their words over Twitter and Facebook. They don't even have real conversations anymore. On the rare occasion they do, it's never even actually in person.  I stopped using Facebook altogether recently.  I don't want to see my friends and family that way anymore.  If I want to see my friends and family then I am going to get in my car and go see my friends and family.  Or pick up a telephone and actually speak to them.  Life is a lot less dramatic not being tied to the computer for hours looking at statuses and pictures that somehow inevitably made me sad or upset for one reason or another.  Why was I ever volunteering to put every one of my thoughts and actions out there for the world anyway?  No one really cared. I don't need accolades just because I made chicken for dinner.  I hated all the normal healthy people anyway.  It just reinforced my limitations.  (I do miss funny cat pictures.)

I think all this technology is crazy.  My daughter barely looks up from her phone no matter what she's doing.  Her ear buds are rarely out of her ears - even when she sleeps.  The poor girl has no concept of what having an actual conversation with real talking is all about. She has even taken to texting me answers when I ask her questions.  My daughter has something like 20,000 followers on Twitter - which I hate.  She has at least 1,000 "friends" on Facebook that she never even talks to.  She SnapChats - I don't even know what that is exactly.  She's in full teenager mode now and I'm over here unable to use my own computer, trying desperately to navigate Instagram and Pinterest just so I can find a new healthy recipe to try for dinner.

Maybe I'm a bad mother.  You would think it would be easy to just tell my kid to unplug, but really, it's not. This is the world now.  This is how we are being programmed to function. These are teenagers today.  My daughter doesn't even get school off because of bad winter weather.  I used to get snow days.  Stay home, sleep late, go outside and play in the snow and worry about school the next day - or the next if the weather was really bad.  It was great.  If the weather is bad now, she has to get up, log on to her computer and have class that way.

But this really isn't a post about how I don't like what's going on in the world and how I hate the fact that my daughter isn't a nine year old appeased by Littlest Pet Shop toys anymore.  It's a post about change.  I've changed.  My tastes have changed.  My outlook has changed.  I don't know when it happened, but it has.  I feel as if I am looking at the world completely differently now.  Through older, more experienced eyes. 

Next month I will be 40 years old.  I remember when my mother turned 40.  I remember dreaming about what things would be like when I turned 40.  I have to say - it's not at all like expected.  I never thought I would be interested in things like better financial management, GMO friendly foods, and historical documentaries.  I also never thought I would be so sick and unable to work at only 40.  It was more of a fear considering my father died when he was only 42.  I feel I've grown though.  I came from a place where I thought I already knew everything I'd ever need to know.  Now, I'm in a place where I am certain I don't know anything.  Especially since I am trying to raise a teenager.  And for the first time in my life I feel like an adult.

I hate it.

Wednesday, July 15, 2015

Summertime Insomnia

I'm so tired. I sporadically sleep.  Maybe an hour or two at a time.  Two if I'm lucky.  Every night it's the same thing.  I go to bed and want to sleep.  I'm tired.  I desire sleep.  I've even started taking short walks and doing other mild exercises during the day to wear myself out so I have to sleep.  I've been in contact with my doctor and had my meds changed several times to accommodate better sleep.  Still, nothing.  Maybe a good night here or there but by and large I'm not sleeping.  There is nothing on my mind.  It's not racing.  There are no thoughts - other than staring at the alarm clock wondering when I'll sleep.  I've even resorted to turning the TV off at night and sleeping in a pitch dark room.  I'm so afraid of the dark it's almost paralyzing so I've always used a TV as a night light.  But now I'm to the point where I welcome the unknown monsters in the dark if it means they will kill me and I'll be able to sleep.  I've completely lost my mind to insomnia.

As I type this I'm listening to Loki sacked out on the couch snoring his heart out twitching his little paws deep in puppy dreams.  I'm jealous.  I'm so tired.  I'm afraid to nap during the day for fear I won't sleep at night - yet I'm not sleeping at night anyway.

That's all for now.  My brain can't handle much more.  Love to all!

Thursday, April 30, 2015

Psychology 101

I've always been interested in psychology.  I've taken numerous classes about it.  I love reading about abnormal psychology; diseases like Dissociative Identity Disorder, Borderline Personality Disorder, Bipolar Disorder, all the things they make movies about.  I have been deeply interested in these topics since I went to my first psychologist at age 10.  I've always wanted to know what makes people tick.  Why they do the things they do.  Until I recently realized, for me, it is all a bunch of bullshit.

I've been in and out of therapy for nearly 30 years.  I've been diagnosed with Severe Depression - inability to cope with life.  I've been depressed my whole life I guess, and never truly happy.  Then we moved to the most surreal place, with a lake and nature and quiet.  I've been able to reflect and think and I've actually become quite happy and content with my life (obviously except for the days I'm a total Crohn's or Fibromyalgia patient.  That's always there.)  So I'm happy now.  Things started clicking in my brain and making sense for the first time. The fog lifted. I want to be outside and enjoy nature, (if this daft Ohio weather ever turns warm for more than five minutes.) I want to paint different rooms in our new home.  I want to cook dinner for my family and talk with my husband.  I want to know what my daughter is doing in school.  I want to be there for my nieces who are both about to have new babies.  I'm genuinely interested in life for the first time in as long as I can remember.  I look forward to getting up in the morning (okay, most days - let's not get crazy here!)  My mind wanders at night about things I want to do the next day.  I feel happy.  This is happiness.  It's not that I don't have worries because I do.  Those are always there, just not so prominent in my thinking anymore.  I mean seriously, I live in a place where most people go to for a weekend getaway or a vacation.  It's bliss!

But then, I saw my psychiatrist.  I told her how I was feeling.  I said I felt better.  The depression was there but not so pronounced.  Not so much of a black cloud hanging over me.  I feel I can breathe.  I told her I had creative ideas flooding my brain instead of doom and gloom thoughts and was excited to think about everything I could do.  And I might have noticed I was talking a bit faster than normal.  She wrote me a prescription for Depakote and diagnosed me with bipolar disorder!  I shouldn't feel this way apparently.  Happy is wrong.  So fine, I played the game and took the Depakote.  For two straight weeks I didn't care about anything.  I was fighting with myself to get out of bed.  I stopped doing everything and didn't even give it a second thought.  I was miserable and angry and all I wanted to do was be left alone a sleep.  Except I couldn't sleep.  For two weeks I got about three hours of very broken sleep a night.  I called the doctor and explained that I felt worse on the medication.  I felt depressed and wasn't sleeping.  I was angry all the time and felt frustrated.  And then the reality of psychiatry became clear.

I was told I was only irritable and angry because I wasn't sleeping and I needed to continue the medicine.  I was taken off of an antidepressant to go on the Depakote and now the doctor wanted to add a small does of that same medicine back into the regimen to help me sleep.  It wasn't helping me sleep before at the high dose so what was a smaller dose going to do?  I could not wrap my head around why I was supposed to continue a medication that made me feel like crap and restart taking a medication I had to stop, in order to start taking the new medication.  What the heck was this doctor trying to do to me?  My bliss was gone.  She took it away with two little pills, just like that.  And I was supposed to feel like that.  Except I didn't.  I stopped taking the Depakote altogether because I hated it.  I finally had a taste of true freedom in happiness and I didn't want to ever go back again.  I did restart the antidepressant I was on at the lower dose and I feel great.  My happy is back.

Until I have to go see the psychiatrist again in a few weeks and then I really will look like I'm bipolar because I stopped taking the bipolar pills.  Typical bipolar - quit taking your meds.  It's a horrible never ending cycle. And now, even writing this post I feel like it's one big, run-on bipolar thought put into sentences.  I have a complex about my behavior and trying to explain why I may not actually be bipolar.  Why is being happy and having ideas and creativity and excitement about things a bad thing?  I've waited my whole life to feel this way emotionally.  Everyone always said that one day things will get better and I finally feel like they have gotten better.  But because of psychology I am not supposed to feel this way?  I don't think so.  I declare shenanigans.

Upon all of this revelation, I started thinking about all the therapy I've had in my life.  My husband and I figured it up and I've seen, at least, 12 different psychiatrists/psychologists/therapists in the last 30 years.  I explained to him that I've always had to talk about the same thing with every one of them.  Nothing can be looked at in my life that is currently happening to me because, well, my father died when I was 15 after an extended illness.  Apparently, even though I feel fine about it, psychology says I'm not over it.  Here's the typical conversation in every therapy session I have ever had - verbatim:

Therapist:  Tell me about your childhood.  Did any major events happen while you were a child?

Me:  Typical childhood, I guess.  My dad died when I was fifteen.  I have a awesome step dad though.

Therapist:  Tell me about your dad.

Me:  I don't remember much other than he was sick for about six years with MS and then he died.

Therapist:  I think we need to explore this more

Me:  Why?  That's not the issue.  I'm more concerned about my life with my husband and child and my own health.

Therapist:  This all stems back to you not being able to cope with your father's death.  You need to work through it.

Me:  I have.  I'm good.

Therapist:  You're in denial.  You haven't coped with your father's death.

Me:  I don't want to talk about my dad.  He's dead.  It's over.  I'm good about it.

Therapist:  You're not over it.

Me: When will I be over it? How long will it take?  It's been damn near 25 years.

Therapist:  It's up to you.

Really. Every time, without fail they all want to stick with this.  So they bring up all the crap from my childhood that is totally irrelevant now and I haven't thought about in years. Yes, thinking about my dad dying might bring a tear to my eye but that doesn't mean I'm not over it.  But they don't see it that way.  More therapy, more drugs, more money.  I think I'm over psychology.

***DISCLAIMER - This post is about my personal experience and how I personally feel.  I do not - in any way - mean to say that there are not real people with real bipolar/depression/mania/etc... who need psychological help.  There are those that do.  And psychology does work and is needed in some cases.  But after 30 years, I think I've done my time and I'm done with it.  I'm just saying. ***