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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.

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Power Surge – Day 4

10 Dec

Now that 32 days have lapsed since beginning a 30 days challenge, I guess I should get onto day 4…

Today’s passage drew on the scenario of a power surge – and what follows. How the lights gets brighter and flicker resulting in a darkness. Our immediate thoughts dashing to the duration of the darkness anticipated, typically sending us searching for our candles and flashlights. Throughout the next passing minutes, hours and days (with support of our generators) we realize our dependencies to the crashed power lines dangling around us. This really hit home to me in more ways than one..

In times like this, we typically struggle to get through our days – we miss our DVRs almost instantaneously, and tether our iPhones, iPads and laptops to our generators and cars for what feels like constant charges to remain connected to the “outside” world. Our smartphones replacing our home networks, providing us with temporary HotSpots to provide us with continual VPN access. Hours later, we realize we are hungry and realize the microwave is worthless, then it gets real when our showers are chilled. This scenario is actually real – it happened to me a few weeks ago during Hurricane Sandy. I thought the world was over when I couldn’t work due to my iPhone not being HotSpot enabled while my mobile WiFi was crashing. Life was hell – or so I thought..

Little did I know that there was another power surge going on in my life – and one that would send me truly spiraling and grasping for anything to hold onto. During Hurricane Sandy, I was on the top of my mountain, and the real darkness came in illness form (see previous post for details). In said post, I mentioned that I was going to make some tweaks to my life, I just didn’t yet know what they looked like yet. Well, I still don’t have a solid plan, but now I have a better framing structure to build that plan off of.

Bouncing back to the book now… the authors really struck a chord with me on this one. To make change in our life, we move from will power to real power. But where the heck to we get our real power from and what is the difference? The book talks about will power being our power and real power being God’s power — we as humans don’t have the real power to make change in our own lives. It all happens by him… I am quiet undecided and almost put off by this in reality. This could be my inner control freak lashing out, but at the end of the day, I just cannot accept the fact that I am not driving my life at all. Must spend more time on this topic – I am at a loss on this one today; HOWEVER, I do really like the idea of will versus real power in concept. I will definitely be spending a lot of time here, both practically and spirituality.

In reality – I am realizing that there is a lot missing from my life, not just a relationship with my Creator. So it is time that I start to re-engage and bring some of the long-lost and never-found facets (back) into my life. A few of the areas that I have identified thus far are:

1. Creator Connection – I have finally said it, and more importantly written it down. If I have an issue with the Big Man in the Sky, then its about time that I address it. I don’t yet know what this will look like – or what my first conversation with him will sound like (if I had to guess, it’ll be a mess), but I finally have a real motivation to set this straight, or at least try. Don’t get me wrong, I haven’t completely written him off over the last 10 years, and I have tried time and time again to work on this relationship. However, something hasn’t clicked for me here yet. I’m not going to push it – but I’m going amp up the energy a little. And I have this bible quote to thank for it. After searching for a passage for essentially 3 years, I finally found it! And I will be purchasing a copy of The Message Bible tomorrow – It may just be in the right language for me.

“Are you tired? Worn out? Burned out on religion? Come to me. Get away with me and you’ll recover your life. I’ll show you how to take a real rest. Walk with me and work with me—watch how I do it. Learn the unforced rhythms of grace. I won’t lay anything heavy or ill-fitting on you. Keep company with me and you’ll learn to live freely and lightly.” (Matthew 11:28-30 MSG)

2. Spiritual Energy & Health – As most things in your life hinge on this, this is a priority. I don’t take spiritual health/energy as the text book “God/human relationship” as the book does. I am expanding this to include spiritual self-grounding in general with Yoga and Eastern medicine. Possible avenues here include acupuncture, herbal remedies etc. Immediate need is to get healthy, not to grow. Healthy things grow – must get healthy first. (This is in addition to medical health.)

3. Perennial Pruning – I am self-admittedly not good at cutting the decaying portions out of my life to make room for new and positive adventures. This is going to change, but not over night. The book brought up that in most vineyards today, the head gardeners train the pruners for 2-3 years before letting them cut the branches, because pruners can ruin the entire crop if they don’t know what they are doing. This aspect scares me, and I know this will be painful – but ultimately, it will be beneficial and productive.

5. Constant Connection – To myself and per the above. I plan on doing this two fold with constant communication and constant confession. Why not start an open dialogue in the morning with the Big Man (once we have worked out our issues) – sharing concerns and expectations for the day and keeping it going through the day. Immediate honesty when realizing I should have said or done something, or shouldn’t have – then moving on. Owning it, learning from it, and leaving it – acting on it if necessary to rectify mistakes as required. Consider it an ongoing catalog of life events and how I feel about them. I’m not sure how much will be written in journals versus simple cognizant thought. Likely journaling the large issues/blessings to learn more about them.

My goal is not to change who I am in any way, but to better myself and heal what is broken in my life. This is an evolution and something that will likely change and morph more than I can imagine today. Cheers to the New Litz.

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