Tag Archives: illness denial

Worse than Hallelujah – honestly…

15 Jan

It’s no surprise that I’ve found myself at a loss of words lately. After my trip to the ER two nights ago, I am again, left with an overwhelming sense of uncertainty in my life. Yes, it was a productive trip in that a new, additional diagnosis was made – which honestly comes with little to no comfort behind it. Although the news was not terminal, that I had zero support system beside me to reach out and hold my hand through it left me my own yet again to push through it “realistically”. Fuck. I am so exhausted of “being realistic”, “being the champ”, “being the inspiration”, “being the strongest person you know.” Let’s be clear here. I’m no one’s champ. I’m not strong now. And if I were an inspiration, it would be for what you should NOT to do, or feel or say…

My latest trip to the ER stared… Well truth be told, it was several weeks in the making, as my doctor deflected my repeated cries for help with honestly valid answers such as “it’s side effects of the extremely high dosage of prednisone”, “we tapered you too fast”, “you are going through withdrawal” etc. I can’t fault him. I was going through so much. This amazing man who I look up to (who is usually sarcastic to get you through the really hard days) has transitioned his care-taking strategy with me by now taking me by the hands and hugged me on more than one occasion over the last few months while I simply cry and break down at every single appointment for no reason at all.  Sure, it was obvious that the prednisone really was affecting me negatively. So I get his linkage and can’t even say he was deflecting my cries for help. He did encouraged me to use the pain management available to me. Telling me not to be worried about looking like an addict, I clearly needed it. But then when the call came in to him that I was bleeding, it was clear that the pills were to blame for slowing down my system a little too much… I just couldn’t win!

Anyway, my amazing dr stopped answering his cell this weekend, so I had to call the oncall DR this Saturday who was quick to simply put me on me on more prednisone. Ok. Great. He promised relief by morning. And guess what! I had relief… For the first time in almost 3 months I enjoyed my morning walk with the dog, I caffeinated up, ate and went to work decorating the craft nook and office walls!

Then the pain started to creep in and creep in some more. Shit.. Called the oncall DR again. He said to get to the ER, he had no advice. And click he was gone… Ok. Now it was time to try everything in my arsenal as the thought of the ER and another hospital admittance scared the living shit out me!  Out came the yoga mat, and some seriously earthy crunchy music. Nope. Ouch. Ballet stretches from my 15 years at the barre… Ouch. Hot bath.. The negative energy just intensified. Added Epsom salts. Stupid idea. Polish off the Dilaudid I had left (only 4mg) with some yummy hot tea, fluffy blanket, pillows and my entire petting zoo with music. Pain just got worse as the minutes ticked by.

Ok now that was all stupid . Now I am loopy and dizzy from drugs, it’s foggy and I need to get to the ER.. My pain has only intensified in the last 3 hours, and I am now in no shape to drive. Thankfully, a local friend agrees to take me with the promise he can drop me off at the door and avoid watching me fall apart inside.  Score.

Just as I expected, they immediately treated me as if I were a drug addict simply looking to score some pain meds for the night – even though I clearly had a bag packed with me ready to be admitted to the hospital.  I took my begging for a bucket to throw up into it, and bleeding out of the IV they started to take blood samples.  Don’t forget, they don’t actually GIVE drug addicts the drugs they so crave… So I was left with a dangling IV starter dripping blood all over me and my bed… awesome. .. I’ll spare you the real image… 3 hours later, a doctor finally comes in who seems to get it.  She states that my inflammation levels are indeed all over the charts as are other markers, so an IV is finally started – drains almost immediately.  Clearly I was dehydrated – couldn’t they have figured that one out by all the water I was asking for?  40MG of Prednisone administered moving me up to my dreaded 60MG (I’ll get into this within a different post).  Finally in comes the Dilaudid and anti-nausea meds.  Neither work.  They inject me 2 more times with Dilaudid… STILL NO RELIEF. You have to be kidding me.  I’m trying to walk around, trying to do stretches, crying… the nurses keep looking at me like I’m an idiot… I’m asking for them for recommendations to make the pain go away – they said to quit moving and lay still.  Oh sweet nurses, you have NO idea what this pain feels like!  Finally around 2am, the DR comes in and suggests a muscle relaxer.  I said OK – whatever you’ve got, I’m happy to try.  RELIEF!  I actually fell asleep sitting up!  It relieved the pressure around my joints enough to actually let the pain pills do their job!

They then checked me for the flu – since I was healthy, they decided the hospital was not a safe place for me (oh yes, then came a long lecture of why in the hell I would subject myself to the hospital during a flu epidemic… excuse me, did we not just go through HOURS worth of pain management trial and error and clearly my pain had risen from a 7.5 to a 15 in a matter of those hours?  Did they not see what had transpired in front of them?  Anyway, we agreed to send me home with all the medication they would have kept me on for a few days in the hospital… only guess what… she didn’t give me the one that was the key to it all… Valium, the muscle relaxer… honestly…

A dramatic taxi ride home (the taxi driver refused to take me to an ATM to get him cash then cussed me out in some language I do not know for not having cash when we got home – mind you after he drove past my house THREE TIMES, I eventually just got out of the taxi and said goodbye and walked home). I was finally home…

Then, onto the radio comes Amy Grant’s, Better than a Hallelujah… you have GOT to be kidding me…

“We pour out of miseries, God just hears a melody, beautiful, the mess we are.  The honest cries of broken hearts are better than a Hallelujah.”… Well… I guess God must just LOVE Crohn’s patients, because we sure are NOT out rejoicing.  We sure do give Him some pretty awesome melodies of miseries… Hope he enjoyed this one… Because I wasn’t enjoying singing this song.

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FairyTales… Without happy endings?

3 Mar

My favorite part about growing up was tying on my tap shoes and lacing up my toe shoes.  No matter where I was, the dance studio, our high school’s stage, my home studio or one of the many stages I competed on, I was able to visit a world full of dreams and hopes.  A world unlike the one of reality.  A world that melted away the pain of the day – both physical and emotional.  I was able to temporarily transform my reality to a creative and peaceful world.  This freedom from the pain is also what I miss most about my childhood and my young adult years.  Today, my joints, bones and muscles ache too much to withstand a long walk — I’m beginning to think my dancing days are officially over for good.

Today, I look back on my life with anger and the hopeless feeling of being defeated.  In high school, I remember explaining to my friends that I understood my family’s turmoil.  That I just wasn’t one of those people who was blessed with an easy childhood.  I explained that I thought everyone, at the end of their lives, would have all gone through the same amount of pain.  I was just going through my pain early in life so that I could be blessed with an easier and happier adulthood.  I honestly believed that…. And I still, up until today, believed that, with everything I had. 

This week was the straw that broke the camel’s back.  This week I finally reached the “ENOUGH” phase; and it made me think back on the trust I held in karma.  My trust that things, someday, would get easier.  What a joke.  They say “what doesn’t kill you makes you stronger.”  And “God only gives you what you can handle.”  Honestly, I’d like to know why God hates me so much.  What did I do to piss off some greater being out there?  What did I do to deserve all this? 

Yes – this is a very different outlook than my last post…. And I understand how out of character this stance is for me.  But enough is seriously enough today.  I hope I wake up tomorrow and can find the silver lining in all this again.  I hope I wake up tomorrow and want to face the day – anxious to see what the day has in store for me.  I hope this denial of the reality of my life goes away – or gets easier to cope with.  Because today, it sucks.  There is no other way to put it.  I think the positive outlook on life is a crock of bullshit.  What can possibly be good about an illness without a cure?  An illness that strips me of my independence and threatens to strip me on what makes me “me”.  It sure doesn’t look like things are about to get any easier, especially when what is supposed to be my “miracle drug” is making me so sick I have nothing left but to vomit stomach bile, makes me lose 75% of my vision for days at a time and makes it too painful to even take the dog for a walk everyday…

Seriously, what did I do to piss off the big guy in sky?

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