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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.

SuperWoman – Apparently a bad thing.

30 Nov

Well – It finally happened… My luck ran out and the true power of my illness was spotlighted this Thanksgiving Holiday as I was admitted to the hospital on Friday, November 23rd.  After battling an attack for three weeks, I finally gave in and called my (amazing) doctor’s cell phone who sent me packing for the ER and a hospital admittance… I had no idea what was about to hit me, and I am not sure I will be as willing to go the next time if I have a repeat adventure because of it…

The illness bit abridged for anyone wondering: My Crohns has spread to a completely new area.  By the time I sought medical help, the inflammation was too sever for pill-form medications.  After ten days of pills, it became event that I was not absorbing them, so IV medications were necessary to get the attack in check.  I had an IV for from Friday night until Tuesday evening to pump in everything from steroids and two antibiotics to muscle relaxers and pain relievers.  I also went through 5 or 6 large IVs – I lost count.  There were CT scans, EKGs and portable X-rays (everything in my own private room except for the CT).  It was also my first CT scan in years without throwing up – thank you to the anti-nausea meds right before!  I lost roughly 10 lbs, when I should have gained 8-10 lbs in that time on pill steroids – you do the math.  Let’s just chalk this up to hard time.  Also thrown in there, some good old-fashioned, character-building family drama – but I’m not about to touch on that one yet.

Turns out that my SuperWoman Cape can hurt me.  Damn do I hate it when I’m wrong, and I sure found this one out the hard way.  Turns out, my attack wasn’t just stress as I had originally thought.  Unbeknownst to me, my body was actually trying to tell me to slow the heck down – that it was in some serious state of shock.  Nah, I just kept on pushing from one thing to the next.  Truth be told, I don’t really regret it either.  Blame it on my age, my immaturity, my lack of concern for myself – I don’t care.  I was living my life like a “normal” 28 year old.  I was rocking it out at my job, I was making a home for myself, I surrounded myself with amazing friends, and I was finally meeting new people again!  I was loving to dress up again, putting on make up, high heals, and accessorizing myself like the woman I was again, the woman I have always been.  I actually was ENJOYING MY LIFE, shame on me!

Now, I am on doctors orders to relax only and get my stress in check – and I’m about to figure out how to do that – or at least start trying.  Since I’ve been released from the hospital, it has been a serious challenge (I didn’t realize how many panic attacks can occur in one afternoon for fear I am missing something).  This is almost torture now, but I am starting to slow down a bit and think about myself first.  This is something I don’t think I’ve ever learned how to do, kinda funny when you think about it actually.  How can I be “well-rounded” if I never come down from high stress levels?

I am currently listening to soothing music, after a bubble bath, sitting at my kitchen counter (I think I’ve only sat here twice since closing in April, and certainly never alone!)  It is kinda nice to be completely unplugged from work, have the TV off and a candle lit – though my thoughts are a little suffocating at the moment.  I’m sure that will calm down soon.

Step one: Stop living in the corner office of my home.  Yes, working from home is amazing – but no more negating the living aspect at home too!

Hear me when I say this – I do NOT regret that I was living my life.  However, through this humbling experience, I did learn that I need to make some adjustments to HOW I was living my life.  Ok – so, that’s admittedly as far as I’ve come.  But progress is progress right? I will take baby-steps today, especially after the week I’ve just had.

And no, the experience wasn’t all bad.  Even though I am admittedly very angry with the big man in the sky, I do recognize the blessings He has bestowed on me.  I am humbled by the support team I have and I would be doing a great disservice if I didn’t list off my THANK YOU LIST:

NOTE: YOU MAY NOT READ INTO THE ORDER OF THIS LIST, YOU MAY NOT GET OFFENDED IF YOU ARE NOT LISTED BY NAME, THERE IS A PLACE FOR EVERYONE ON THIS LIST. IF I SERIOUSLY MISSED YOU – JUST YELL AT ME & GET IT OVER WITH 🙂

Angela – For being my rock – plain and simple. Oh yea, and… The ride to the ER, sitting in the ER instead of bedtime with your baby, for driving to my house countless times to pick things up for me and bring to the hospital  walking the dog/feeding the cats/getting the mail.  For never letting me completely fall.  For marrying the most amazing man who supports me too and keeps me laughing.  Oh yea, and putting up my Christmas Tree, building my craft desk, SmashBooks and Ikea trips!  Ok, I’ll stop before I make you cry, too.

Sethiya and Slawek – For taking my dog in for a week like he was your own, and loving on him as I would.  The pictures and video have been amazing.  I can’t wait to get my hands on him again, but you have saved me – there is no way I could have walked him yet.

Matt, Mark, Kellie, Andrea, Maddie and Hannah – For your countless support over the phone calls, text messages, gmail chats, facebook posts, flowers and books (since I can’t send Amazon shipments to my own address like a total blonde).  I could never get through a day without any of you.

Greg – For the multiple hospital visits, trashy magazines, movies on loan and soduko book.  I can’t wait to be back at the bar! And messages delivered by Greg from  Tyler and Los.

Maytanee – For visiting me in the hospital with bag in hand – magazines, novel and Christmas tree decorations and that amazing smile of yours.

My management staff, co-workers, and business unit – For the more than generous gift for food delivery over the next few weeks so I can stay out of the kitchen if needed, flowers and balloon! To Felix, Phil and Sean for visits to the hospital and at home.  For encouraging me not to work and focus on my health (seriously, how did I get so lucky?).  To Sean for driving me home from the hospital and all over Northern Virginia to find a pharmacy that stocked my Rx.  To Kippy and Stephen for the flowers.

Diane – For being there for me, after all these years, with words of encouragement that resonate through me like a stone in a still pond. I need not say a word more.

“Sykes Sisters” (even though you aren’t both Sykes anymore) – For the ongoing Crohn’s advice and support.  For the beautiful plant that will live in my home office every day.

Sean and Sara – For visiting me in the hospital, making me feel normal, the treat for crafting and the Christmas movie on loan!

Wilson – for visiting at the hospital – loved our random catch up sess!

Melissa, Arek and Ella – For the amazing Polish soup – it was the first thing I was able to eat!

HollyBerry, Megan, Stacie, Colby, Jenny T, Jenny C, Los, Alex – For your constant text messages that kept me going

Mike – For the Crohn’s advice.

Joel and John – For being my “Dad’s” and keeping me focused on whats important nearly daily (outside of this).

Cieran – For being a rock across the pond – no really.  For staying with me on Facebook in Scotland nearly 24/7.  Who knew a IT support call at Axios could lead to such a dear friendship.  This friendship is going no where!

Valko – For your heartfelt call and countless “bless their hearts” that make me grin.  I love you like a sister!

To everyone who stayed with me on Facebook, G-Chat and random text messages – I have been so blessed by each and every one of you – and I don’t want to name you all for fear I will miss someone and hurt your feelings.  You kept me going and I count each of you in my blessings.

And to one more – thank you for walking through my hospital door Monday morning, the calls, the messages, for making me smile and taking care of me when you could.  Please be safe.

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