Fear of flying / Refinement

Today, I’m sitting in my hospital bed thinking and wondering, dreaming and hoping.  I’ve come up with an idea, a proposition… Bear with me as I get there.

I suppose it’s like the fear of flying.

See, airports aren’t scary, but for some people they facilitate fear just because of their proximity to take offs, landings, and turbulence.

I’m not scared of nighttime, but it facilitates fear because I know bedtime is soon approaching.  It means that soon the people will go away and the quiet will set in.  It means I’ll soon be alone to fend for myself.  Plus, it’s all too clear to me that I don’t sleep well at night, and I have memories of some very traumatic nighttime attacks.

In the same manner, I can say I am not afraid of hospitals, IVs, tests, or doctors.  Even surgery, really.   They just facilitate my deepest fear that I know I’m in over my head with illnesses science can’t even control. Illnesses that prevent me from achieving my dreams, make each day a struggle, and put limits on my life in all sorts of ways. Illnesses that play with my mind, making me worry about where my insurance will come from once I leave my parents’ and what kind of guy would ever want to marry this kind of a disaster. Illnesses that produce hours of phone calls and sorting through bills, dealing with insurance, and filling out forms. Illnesses that easily fill a pillbox full of medications that have taken over my body. Illnesses that self-adjust differently each and every day, illnesses that threaten my ability to make plans.  And ultimately, illnesses that could one day kill me, taking me from the people and the life I so greatly love.  That’s the only thing I truly fear.

But for now, I think maybe my illnesses are like the 6th grade. You have to go – you may not want to but have no choice.  Reluctantly, you bring home new knowledge every day.  You can’t help it.  Fortunately, it makes you a better person as you learn about the world and gain social skills. 

Likewise, I don’t have a choice whether or not to be sick, but I can be grateful knowing at least it’s making me a better person. This lifetime has given me so much love, increased my patience, and given me an empathy most people can never obtain. It’s given me opportunities and experiences that are important to my life and career studying to be a nurse. And most precious to me, it has given me a choice to put my life in the Refiner’s fire as somehow He refines and uses this damaged life for His glory. 

And finally I say, if all of this has been for even one person to know Him, if all of this has been to keep one person afloat, then each and every painful part of it has been worth it.  All 19 years of it.

I can’t get the thought of “Refiner’s fire” out of my mind.  Malachi says,

For He will be like a refiner’s fire. He will sit as a refiner and purifier of silver; he will purify and refine them. 

John Piper states,

He is a refiner’s fire, and that makes all the difference. A refiner’s fire does not destroy indiscriminately like a forest fire. A refiner’s fire does not consume completely like the fire of an incinerator. A refiner’s fire refines. It purifies. It melts down the bar of silver or gold, separates out the impurities that ruin its value, burns them up, and leaves the silver and gold intact. He is like a refiner’s fire.  But it does say, he is like a REFINER’S fire. And therefore this is not merely a word of warning, but a tremendous word of hope. The furnace of affliction in the family of God is always for refinement, never for destruction.

May the crazy miracle of just getting through my days be to the glory of Him who holds my future.  Praise God for the hope of refinement, of our ability to choose to be bettered through the pain and turmoil of this life.

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Tonight, tomorrow & the future

Tonight, no sleep will come.

Tomorrow is my one-year transplant anniversary, or transplantversary, and so much heaviness surrounds me.  I cannot keep discerning the good memories from the bad, the blessings from the trials.  It’s all a blur in my head right now, and I cannot find rest.

Tomorrow is also a long day for me at the Clinic.  After the battle of waking up at 5, I have a very important ultrasound and CT scan.  It’s time for my second “tumor marker” labs to make sure the tumor that grew on my old liver hasn’t reappeared on my new liver – or anywhere else, for that matter.  Additionally, as I said in a previous update, my surgeon discovered a major blood vessel connecting to my liver is narrowing.  It could be a temporary thing, or it could be a more permanent danger.  The problem is that while the vessel is narrowing, or constricting, blood cannot access and/or leave the liver without extreme pressure and an increase in liver enzymes.  If the scans show the narrowing is still there, or worse, I will need surgery to open the vein.  

Needless to say, I am done with all this.  I do not want a tumor and I do not want a constricted vessel that needs to be opened.  However, this past year, I’ve really learned how our needs are vastly different than our wants.  

The LORD is my light and my salvation; [what] shall I fear? the LORD is the strength of my life; of [what] shall I be afraid?

Psalm 27.1

…Reflecting on the past, praying for the future, knowing the Hand that brought me through the past 365 days will get me through the next.

Check back tomorrow for whatever I can think of to say on my official Transplantversary.  😉

Over

Just finished three doctors appointments in one day. Preceded by a chemo-induced (freak side effect) coma that lasted two days (Friday thru Monday, kind of felt like five) & somehow, fed the anesthesia-induced amnesia that began two weeks prior. If it happened in the last 2-3 weeks? It likely won’t be in my memory. I blame the chemo since it was the only “new” factor added to the mix. And I got antibiotics, pain meds, and nausea meds to add to my current drug lineup.

In other news… Right, because there is no other news. I fit in laundry today. I opened my huge stack of mail, convinced I just returned from Florida. (My mom corrected me, I was admitted to the hospital Thursday, so I technically missed three mail days.) So I shop online. A little too much. That’s really all. Unless you care to know about my mom waking me up at 3am to make sure I got my antibiotics on time. (I love how she figured it out just 4hrs before I “woke up”) I only have ten days of these but we already may have missed a couple doses.

Just wanted to let you all know I’m still alive … a few of you have checked, and it’s nice to know I’m cared about. And thanks for the cards… all I can say is WOW! I literally have run out of room to display them all!

Love to you all…

Amanda

Week 2 – More!

It’s Wednesday, and we’re at it the Clinic again!  Right now I’m on the transplant floor in the waiting room.  I have my last appointment at 2, and then I’m free to go!  Well, until they think of something else or I come in for inpatient testing on the 14/15th.

This morning, we met with a nutritionist, anesthesiologist (why are they all so HOT always?!) and worked some with the transplant coordinator.  Then another transplant coordinator put on an information meeting for us where we covered everything from A-Z.  Dad came up to meet us for that since I knew he’d learn a lot.  He and Mom went to grab lunch while I’m sitting here waiting for my 2pm.  I guess I could have gone with them, but I would have needed a wheelchair and then a semi truck to haul our total of 5 Vera Bradleys on it.  Excessive much?

Nutritionist didn’t seem to mind my awful diet, but she wants me to up the protein so I don’t have too much muscle wasting post-op.  Anesthesiologist asked pages of questions and concluded several times, “You’ll sail through this,” “Wow, you’ll get through this with flying colors!”  So that was good.

Since my insomnia has multiplied a zillion fold in the past week, I’m hoping I can talk the transplant psychiatrist to give me something stronger but urban legend around here says she’s pretty picky on drugs and is actually specializes with drug rehab.  Some psychs won’t give an anti-anxiety to anyone because they think patients need to learn breathing skills, imagery, personal ways to relieve stress, etc. because the alternative would be taking drugs that can build a tolerance, sometimes build addiction, etc. Then other psychs argue, “Why were these drugs made if no one is going to use them? That’s what they’re there for!”  My psych at home is of the first kind and I’ve had it with a year or two of that.  Now my nerves are 100x worse, I’m NOT sleeping, and I WANT drugs.  I know I can find help if I can find the right doctor.  Of course this doctor is just for psych clearance for the transplant, but if I don’t get a full night of sleep for another night, I might just go crazy.

I’m about done with all the pre-testing, and now we get to wait.  The CCF transplant committee board will present my case tomorrow, they will release it to the Ohio state committee afterwards, and then they will send it to both of my insurance companies to verify payment.  Then I find out where I am on the list and buckle my seat belt.  

This is going to be a huge, bumpy ride.