What If?

It seems like the longer I live, the more chances I get to ask myself "What if?"

What if June 1, 2006 had gone differently?  What if that ultrasound had shown a healthy, living fourteen week baby?  What if my deep-rooted fear and sinking feeling had been unfounded?

I'd have a child now; she'd be about five and a half.  I'd be thanking God for the time with her and mourning how quickly it had passed.  And she'd have had five and a half years of experiences to shape her into who she is. 

Instead, my baby went to heaven before I got to meet her.  Instead, my husband and I saw that still, silent ultrasound and spent the next day begging and praying and trying to hope that things weren't as they seemed.  Instead, we chose her name with tears and longing.  Instead, we watched her due date come and go and our arms stayed achingly empty.

What if on January 31, 2007 I had let my Gramma stay at my house to take care of me after my knee surgery?  What if she had not been in the van during that crash?  What if the van hadn't been there?  What if the driver of that milk truck hadn't chosen to use his cell phone?  What if the road crews had done a better job of spreading salt on that particular stretch?

Would that mean that today, I'd be able to ask my Gramma how to love my dying friend?  Would it mean that I'd have someone to give me the push I need to love without reservation?  Would it mean I'd have fewer nights filled with empty, silent tears?  Would my heart hurt a little less?

What if I had chosen to ignore the growing attachment and attraction I felt toward Derek nine years ago?

I'd have loved and perhaps married someone else.  And I'd have missed out on so much.  I'd have missed the laughter and the joy and the tender moments.  I'd have missed the frustration and fear and uncertainty.  I'd never have stood in disbelief as I watched my new relatives dance in a circle to weird Greek music.  I wouldn't have found myself having to choose between what I wanted and what was right as I responded to certain situations.  I wouldn't be laying on the couch with my leg in the air, knowing that tonight my husband will come home and I will be proud of how well he did today as he works a job that he is not "naturally gifted" to do.

What if in September of 1999, the person visiting me in the hospital had simply said "That is sad and I am sorry" when I told him I had to find a new home?  What if his wife had said she didn't want to start again with yet another teenager?  What if my dad hadn't been agreeable?  What if the doctors had said no?

I wouldn't have learned to love.  I wouldn't have learned to laugh, or to trust, or to be honest.  I wouldn't have experienced unconditional acceptance into a family that loved me just because they wanted to.  I wouldn't have had the foundation I needed to go out into the world and build a life.  And truthfully, I probably wouldn't have survived.

What if my childhood had been easier?  What if I'd never been betrayed, abandoned, or abused?  What if I hadn't survived things that are almost unspeakable?

I would have been closer to "normal."  I wouldn't have been living with PTSD for as long as I can remember.  I would have had less fear, less anger, less pain.  I wouldn't have had to be as strong or as brave.  I wouldn't have learned to lie about everything.  I could have "just been me."  But I wouldn't have had a reason to develop the compassion I have today.  I wouldn't have such a personal motivation to drive so much of what I do.  I wouldn't know how profoundly forgiveness changes a person.  I would never have seen the amazing transformation that happens when someone literally turns from evil and surrenders to Christ.  I probably wouldn't be as accepting of others and I am certain that I'd have less wisdom, less strength, and less hope. 

I could go on, and on, and on.  Because there are hundreds, no, thousands, of "what ifs" in my life.  In every life.  There are so many things that change the course of our lives from that moment on.  Sometimes, we get the better option.  Sometimes, we don't.  Always, we can choose to look back and ask "What if?"  Sometimes, doing so can help us.  It can give us insight, it can give us wisdom, help us make better choices in the future.  It can give us a chance to be grateful and an opportunity to embrace peace and acceptance.  But it can also hurt us.  It can make us regret things we cannot change.  It can make us grieve, it can make us angry and uncertain and afraid.  We can look back and feel slighted and compel us to make decisions that are hurtful to us now.

I have one final "what if" that I would like to ask.  One question that I think we all need to answer for ourselves, in our own hearts and minds.  One thing that needs to be settled permanently within each of us.

What if I choose to look back at my life from time to time, and ask myself how things could have been different, and then I take that perspective and use it to answer the 'what ifs' that face me every day, so that I can face tomorrow without regret?

Leg Time

1st Peter 2:24:
Who His own self [meaning Christ] bore our sins in His own body on the cross, so that we, being dead to sin, should live righteously:  By His stripes you were healed.

Healed.  It is with joy and excitement and hope and thanksgiving that I speak that word.  Healed.

For years, I attacked my own body.  I kept it hidden from most of the world, but not from the doctors who worked so hard to help me heal from those attacks.  I received compassionate, skilled medical care; many who admit to self injury are not so fortunate.

But medicine and time can only heal so much.

My right leg has been hurt quite badly, many times.  A few years back, it caught up to me.  Requiring yet another set of sutures landed me in the hospital.  Hospitals are good places to go if you are sick.  Hospitals are also good places to go if one wishes to be exposed to a plethora of hurtful bacteria.  My leg got infected, and for the first time in my life, the medical care I received was sub-par.  It festered and deteriorated for months before I had the first of too many emergency procedures.  At that time, it was found that the years of injury had caused significant vascular impairment.  In other words, you can only wreck so many arteries (big and small) before your foot simply doesn't get enough blood.  Because of the circulation problems and the effects of stress on my immune system and the unfortunate combination of resistant bacteria, it has been a rocky road since then.  I have spent more days either in a walking boot or on crutches, than I have spent walking normally.  I've got very limited sensation.  Lasting muscle weakness.  Pain, all the time.  And when stuff happens - little stuff, like a scuff on my heal from the stairs or a scratch from one of the cats - it doesn't heal like it should.  It can't. 

Last fall, things cascaded downhill really quickly. 

I am proud to say, though, that I have not done anything to deliberately harm myself in any way since the beginning of 2010.  I've been taking care of my body; seeing it as a gift from God.  It has been a fight.  A difficult, frustrating fight that has been worth it every second of the way. 

But it is in my medical record that I used to hurt myself, deliberately.  Every time a professional has entered the picture to try to help with my leg, it has been assumed b y them that I am still doing things to hurt myself.  It's led to ineffective and unprofessional treatment.

I am now three months into a process of trying to heal the ulcers that broke through the surface of my skin graft and proceeded to worsen and deepen for weeks as wound care specialists treated me for infection.  Infection that isn't present.  And it has been three and a half weeks of daily (yes, every day) appointments with my family doctor.  Three and a half weeks of finally having someone acknowledge that this is not something within my control, and it is not something I have caused.  Three and a half weeks of compassion and the best medical care that my doctor and the nurses working with him can provide. 
And healing is happening.  All the fancy solutions and ointments have been abandoned in favor of simplicity.  Pain relief has been not only provided but encouraged.  Nobody is wasting time trying to place blame.  And the wound that physically should not be able to do so, is healing.  Rapidly and well.  Skin is growing where skin can't grow.  I am completely without signs of systemic infection, and there is also no evidence of bacterial colonization.  Some of the defects that were present even after reconstruction and grafting surgeries have been filled in with healthy tissue.

It is nothing short of amazing.  Even miraculous.

And instead of a future full of continuous appointments and frustration and pain, there is an end in sight.  The day is not so far off when I will be able to leave the clinic and know that I don't have to go back any time soon.  Don't get me wrong; my doctor and the nurses and even the receptionists are wonderful people.  People I care about, people who are uplifting and kind, who are the sort of people I would choose to spend time with simply for the sake of their company.  It's just that the daily appointments, the constant need for said appointments, and the amount of energy, time, and attention being devoted to me, feels suffocating.  I'm the sort of person that prefers to fly under the radar.  Solitude doesn't feel lonely to me - it feels peaceful.  There are times when I am not sure what I look forward to more - being healed or the simple reality of not needing and not receiving this sort of intervention every day. 

Eventually though, I will be well enough to just pack a bag and go stay with my dad and family without having to worry about making it to my next appointment.  Eventually, my time and energy will be put into something more, something better.  Eventually, I  won't require so much as an Advil or Tylenol for pain relief, let alone narcotics.  Eventually, I'll walk into that clinic on two feet with no crutches in my hands, and I will undergo the recommended yearly physical exam, and there won't be any problems.  I'll smile at the nice people and walk back out the door.

Prayer Request

So, I have a prayer request for you... my faithful readers.

Can you pray for me?  For complete recovery, both physical and mental/emotional?

The physical recovery has slowed down considerably.  I am still moving the right direction, but there is also still a lot of pain each day, and not just in my leg.  I have a very sore back and ribs from the fall, and some internal pain, as well as feeling similar to having the flu (aches and pains randomly coming and going in various muscles and joints).  Also, the scar from my central line is still very sensitive.  As far as my leg, I had what I hope was my last silver-nitrate treatment yesterday.  The silver nitrate is used to "burn" away some of the granulation tissue, since it has been inflamed and tending to grow higher than the edges of the wound.  I believe things will be closed up in another two weeks or so, and then it's a waiting game to see if the scar will need surgical attention.  I am really trying to limit the amount of hydrocodone I take for pain, but it is hard right now.  Just the simple act of walking is painful enough to make me nauseous.  But after six weeks on crutches, I'm just thankful to be on my own two feet.

That brings me to the second half of my request.  When I was still in the hospital, there wasn't any room or time to be very upset about what was happening.  I was confused and a little angry and scared, but so much of the focus was on the moment to moment task of trying to recover.  As time has gone by though, and my body slowly rebuilds, I have been struggling emotionally.  I have tried not to make a big deal of it, but that Monday that I got very sick, I genuinely believed I was dying... and so did most of the medical professionals caring for me.  It was terrifying then, and now that my head is clear and I'm fully conscious, it's even more terrifying.  I don't have a solid answer, and never will, about what exactly caused the sepsis.  While my blood culture did reveal the same bacteria that was grown from each of the four abscesses they operated on, there was nothing about the day in question that should have sent things spiraling so out of control.  That's the scary part.  I keep saying it will never happen again... but how do I know?  If I don't know how or why it happened to start with, how do I prevent it in the future? 

I have actually been having nightmares and things that could almost be described as "flashbacks" about that day.  About laying there with my feet up in the air (I was tilted about 30-35 degrees, head down).  About the agony of the central line going in (no sedation, no local anesthetic because of being too unstable, and everything already really hurt), about the far more intense pain involved with opening up the abscess in ICU, where the lidocaine did nothing because the tissue was too inflamed.  About laying on the CT table and feeling sheer terror as my lungs felt like a hose was letting water fill them, and about the exhaustion that I felt by morning after struggling so hard to just breathe, for so long. 

About the looks on the faces of those I loved.  Especially about that.

So if you could pray that peace would replace the fear and that good memories would replace the bad, and if you could pray for continued healing and the restoration of sound health, I would be very, very thankful.

Thank you everyone.  May you have a very blessed and beautiful Christmas!

I'm Alive

Alrighty then.  Sunday, November 27th, I felt FINE.  My leg was sore and looking icky, but the surgeon had SEEN it looking icky and didn't seem worried.  My husband and I spent the night talking and watching a few episodes online and then did some snuggling.  About four thirty, I went to sleep out on the couch, because it hurts my leg like crazy to be touched.  At six AM, I woke up and started throwing up more violently, and with more... substance... than I thought a person possibly could.  It lasted about ten minutes.  Derek helped me get cleaned up and then I went back to sleep, for about fifteen minutes.  I woke up again, feeling like I needed the bathroom - I knew things were going to come out both ends.  I stood up, and could hear blood rushing in my ears and feel my heart pounding.  I took about eight steps - enough to get me into the bedroom, next to the night stand.  Everything went black with sparkling lights, and I felt my body crumple, bouncing off the nightstand.  I heard myself vomiting... and then it was blissful, black, silence.

This part, is just what I've been told.  The ambulance was called, and I was loaded up into their stair-chair. 

Halfway down our stairs, I woke to someone digging their knuckle into my ribs and saying "Jenn, look at me.  Look me in the eyes."  I wanted to do so, wanted to be the obedient patient... but I could not see a thing.  Nothing.  Just blackness.  Then, silence. 

The next thing I remember is waking up with a paramedic on each side of me stabbing my arms.  They wanted to get an IV started, desperately, and so both were trying.  After many, many tries, Grumpy Lady finally got one in.  Nice Man retreated to the front to take me to the Little City hospital because I was so unstable.  Blood pressure was 48/25.  They put my feet way above my head and started pouring in fluids - heated fluids.  My temperature was 102.  Half way to the Little City Hospital, my vision cleared and I was able to start speaking.  When we got there, they had to put the stretcher flat to move me, and everything went black and quiet again.

By the time we left Little City Hospital to go to the Bigger City Hospital, my temperature was 104.8, my BP was only up to 60/30, and I'd had three liters of fluid.  As soon as they put me back in the ambulance, they angled my feet way up and I was awake again.  Each trip to flatness knocked me out as effectively as a hammer to the head would have.  On the way to the Bigger City, I started realizing just how sick I was.  I could feel different organs beginning to hurt - really hurt, like they were caught in clamps.  First was up under my ribs on the right.  Then it was all up and down my left side, too.  Then it was as if I'd been punched in the right kidney... the left followed a few minutes later.  I threw up again, and I could feel the sore spot on my ribs where I'd hit the nightstand.  I could also feel the scuff on the end of my chin where I'd hit... something.  My head started to pound loudly with every heart beat and was throbbing with pain.  My vision was coming and going.

I faded into nothingness again when they put the stretcher flat to wheel me into the emergency room.  I woke up on their bed with my feet way higher than my head was.  I had an IV in each arm and I was mumbling to Derek about who he should call.  Then they kicked him out, and drew blood cultures and ran two and a half more liters of fluid - putting my total up to 6 in 2 hours.  My BP stubbornly stayed down at 60/30, and my heart rate was steadily climbing.  My temperature was 105.  Blood work showed kidney and liver problems as well as the presence of extra-large platelets, which were clotting off and getting in the way of things.

Someone said "We need to get a central line in her."  Someone else said "We can't.  She can't be sedated right now.  Not at all.  And she's so feverish that lidocaine wouldn't be terribly effective."  "Well, we'll just do it right here.  Clear everyone else out."

And they did.  Not fun.  Not fun at ALL.  I get why people get sedated for it... I'd have given anything for some nitrous or even just some pain relief.  Halfway through, I hollered that they were hurting my neck, and the assured me that wasn't possible.  They got the line in, did a chest x-ray which showed fluid on my lungs and a central line that had flipped and gone up into my neck.  They needed to start the medications for my heart though, so they let it slide momentarily.  They came in and did an ultrasound to check blood flow in my major organs, and then I got an injection of something to break up clots.  Then things got quiet for a while, while they waited for the heart and blood pressure meds to start working.  My husband and my best friend both came in and were there.

I was so convinced that I was dying, that it took everything I had to resist the urge to say "Goodbye" to them.  Alarms were constantly going off.  We were just waiting around to get me down for a CT of my leg.



My friend came in, and held my hand and offered comfort and kept me from killing the surgeon, as the surgeon operated on my leg right there in my room.  There was no option for sedation, as I was far too sick and my lungs, especially, would have failed under anesthesia.  Because of how sick I was and how infected my leg was, the lidocaine was... useless.  Hurt like crazy going in, and offered no numbing effect at all.  He finished and packed a bunch of gauze into my leg, and then a different surgeon came in.  My friend left, and the new surgeon said "I'm here to re-do your central line" and I LOST.IT.  I was DONE.  I psyched myself up for this horrible repeat of earlier... instead, she put a wire through one of the catheters to hold her place in the artery, pulled the old line, threaded the new one over the wire, I felt a bunch of pressure, and then this crazy tickling sensation by my heart.  The next chest xray showed lungs even more filled with fluid, but the central line was in the right place.  It felt good to not get a burning, full feeling in my neck every time they gave an IV injection.

Respiratory therapy came up and did a breathing treatment to help get rid of the fluid...

and that's how I spent the night.  Nurses constantly doing things, monitors beeping and alarms grating and beginning to wonder if I had enough drugs in me to compensate for embalming procedures.  Yes, I still thought I was probably going to die.  My feet were still over my head and I still felt absolutely horrible.

About 24 hours after being admitted though, things started turning around... faster and faster and faster.  I even got a PCA for the leg pain (couldn't have it before because I was too sick).  I was getting a lot of heparin shots, and there were never fewer than five IV bags hanging and dripping various things into my central line.  And every 30 minutes someone would come in with yet another syringe full of medication for me.

By Thursday afternoon, I was well enough that the doctor said "Okay, you may as well go home."

That kind of recovery, after that kind of sick, is nothing short of miraculous in my book.  I have found out since then, that the doctors were quite certain I would not make it through the first night. 

To GOD be the glory - I want to go to heaven, but I don't want to go so soon that it tears at the hearts of those I love.

WOW.

So I actually DO have a reason for having neglected this blog so thoroughly.

Starting mid-September, my leg (the one that had the graft in May of 2010) started hurting more than usual, and getting more warm and swollen.  I had xrays and blood tests and even a bone scan.  Nothing indicated an infection of the bone, but nothing was entirely "normal" either.  We were in the middle of investigating possible causes, while I fought increasing pain.  The following bullet list is a short summary of what transpired after the bone scan.

• Sunday, 10/30/2011
  At some point before this, I acquired a small, innocuous looking scratch on my graft, close to the edge that is stuck to the front of my tibia.  It didn't hurt, didn't look infected, didn't cause a fever... and I have no idea where or when or how I got it, because I can't FEEL the skin where the graft is.  Not sharp pain, that is.  I can feel pressure, sure, and heat, but no sharp sensations.  On Sunday, Derek and I noted and commented on the scratch and what appeared to be a bruise beneath it.  Just a little pink, and a little warm.  I already had an appointment scheduled for Monday, to discuss pain control options.

• Monday, 10/31/2011
  By Monday morning, my shin was huge and hot and red, I felt like I'd been run over by a Mac Truck, I had a fever, and was genuinely sick.  Sick enough that after drawing cultures and other labs, my doctor tucked me into an ambulance and sent me away to the City.  By this point, every breath made my leg feel like it was being smashed.  I was in tears, shaking and sweating.  I will pause here to say this:  Whoever decided that paramedics can start IV's and administer Fentanyl at their discretion... they are something along the lines of "hero" to me.
  
  We got to the Hospital, and I was taken straight to a room.  NO ER, no triage, nothing.  Just up to a room.  More cultures were drawn, another IV line was started, and a circle was drawn on my leg marking the edges of the red, swollen, hot skin.  I was then sent for an X-Ray, which I assumed would come back normal - the last one had.  But no, it did NOT.  It showed fluid and air building up in the deeper tissues, indicative of a fast-moving infection.
  
  Then I met my surgeon, Dr. J.  I had him and his resident assigned to me, another surgeon, Dr. A, as well as Dr. M, Dr. C, Dr. M and Dr. F, plus their interns.  It was a herd.  I wish it could have all been done by just one person.  Less intrusive that way.
  
  7:30 that night I was in surgery.  The operation went fast.  They didn't have to remove anything terribly important, and left the incision (about 6 inches long) open and packed.  I woke up in recover at about 9:00 and I swear, I had NEVER been so miserable in my life.  My temp was up over 104, I was pouring sweat, covered in goosebumps, shivering so hard it was more like convulsions, crying so hard, throwing up, and my leg felt like a combination of fire and being crushed, more intensely than I could comprehend.  It was almost midnight before I was in good enough shape to see my hubby.  They said I was septic, and that's why I was so miserable.  I had a great night nurse who kept my double room just for me, and took care of me so well.  Next morning my roommate arrived and I could. not. do. it.
  
  I don't like PTSD.  I don't like that an other's simple presence when I'm not feeling well or perceive that I am vulnerable, is enough to send me into full-on flashbacks and panic attacks and terror and my brain goes into lock down mode.  There is no reasoning to make it stop, there's no gentle tones or persuasive words.  I spazz out in a world-class manner.  So my good ol' nurse got me moved to a private room in a different unit.  The staff THERE were great too.

• Tuesday, 11/1/2011Tuesday morning, I found out that I was now on Vancomyacin, Rocephin, merepenem, and flagyl.  And I got my PCA pump.  Oh that wonderful device with the stupid nose flap.  Hospital brought me in a laptop to use... mostly it just sat there playing music or shows off of Hulu.    That afternoon, I went back into surgery for more debridement and dressing change.  Late that night, I was taken to a procedure room and sedated for a dressing change.

• Wednesday, 11/2/2011 I continued to complain of pain on the inside of my shin bone - not where the abscess was.  And in my ankle.  It kept getting dismissed.  Temp was staying mostly normal.  They told us the organism was susceptible to the meds I was getting (e. Coli - and NO, I don't know how anyone gets e. coli in their leg, but apparently it's not as far fetched as I thought).  I pointed out a second area of possible infection.  They agreed.
  
  They wanted to unpack, debride, use pressurized water to cleans, and then repack my wound.  And I flipped again.  NO WAY.  Not with me awake!!!  They ran around and around with me about it, until Dr. J finally asked what the real problem was.  I explained the flashback it was conjuring.  And from then forward, it was sleep-city.

• Thursday, 11/3/2011 Thursday morning, I went to a procedure room and was given conscious sedation for my dressing change.  I kept complaining about the area near my tibia that hurt, so they ordered an ultrasound to look for free fluid... and boy howdy, did they find it.  Nice little abscess under the skin but mostly fluid buildup around the bone.  The took me to the OR, knocked me out completely, did a needle aspiration on the new abscess and tried to get the deeper fluid, and then aggressively cleaned the initial incision and performed a delayed closure.  They left a lot of drain tubing in place.

• Friday, 11/4/2011 Was still on the Fentanyl PCA.  Dr. M wanted me to go home... I knew I wasn't ready.  Dr. F, from infectious disease made a plan with my husband - I would go 24 hours with IV fluids but all meds would be oral, unless things escalated, before I would be allowed home.  Surgery liked the plan, but said we should wait till Sunday, so they could pull the drain before I left.  So we left THAT as our plan.

• Saturday, 11/5/2011 1/2 of the drain was removed.  I was taught how to do my own dressing changes, shown what to watch for.  There was some iffy blood work, but they decided it was contaminated by skin, not by actual blood-borne pathogens.  I was off the PCA.  Miserable, but off the pump and ready to go.

• Sunday, 11/6/2011 Sunday, they pulled the rest of the drain, said what to watch for, how to care for things.  At that time, a secondary abscess just medial of my tibia was noted.  It was felt to be small enough that antibiotics alone would address the problem.  After much waiting around, I got to LEAVE.  To go to MY HOME.

• Monday, 11/7/2011 I did my dressing change as ordered - I even filmed it for documentation. The rest of the day, I spent sleeping.

• Tuesday, 11/8/2011
  Because I was uncomfortable waiting a week to see my surgeon for a recheck, my family doc agreed to take a look.  He did so, and called the surgeon.  They had me go NPO immediately in preparation for seeing the surgeon on Wednesday.
  
  Unfortunately, that night, I took a shower.  My first since the surgery.  They had finally given permission and it felt SO SOOO GOOD.  A sponge bath just can't even compare.  About 7:50 PM I was all relaxed and sleepy and fell asleep on the couch.  I woke up screaming at the TOP of my lungs at 8:05.  My head was the WORST pain I can imagine.  Searing and pressure and throbbing with my heart beat and made worse by sound and light and trying to lay flat and turning my head or moving or coughing or talking.I was screaming too much to call 911, and my husband was at work.  They got there though.  I rode lights and sirens (and lots of IV meds pushed and some crazy EKG monitors - finally a nicely documented run of SVT). 
  
  Doctors started talking meningitis, encephalitis, and big scary bad words.
  
  They still don't know what caused it.  Spinal fluid came back indicative of SOMETHING, but non-specific.  CT didn't show any large abnormalities.  So I got me a room with a room mate and the pain and the PTSD fed off each other until they ended up moving me up to the cardio floor, into the only private room left in the hospital. 
  
  They had me on Vanc, Rocephin, and Merepenim.  They switched the Rocephin to Timentin, and the merepenim to Erdepenim.  They also added in Acyclovir.  I had to have two lines again, because the meds couldn't mix together outside the body.

• Wednesday, 11/9/2011
  Finally, things under control enough that I SLEPT.  And SLEPT.  And then SLEPT some more.

• Thursday, 11/10/2011 Home sweet home.

• Wednesday, 11/16/2011 Recheck with the surgeon.  He informed me I needed my secondary abscess drained.  He recommended a standard I&D, under anesthesia.  I consented, and planned for Thursday to be a nightmare.

• Thursday, 11/17/2011 So much for a nightmare.  The day went well.  Operation was really fast and smooth, recovery was smooth, they are hopeful that maybe this could be my last trip to the OR for this problem.
   
• The weekend went well, but the defect was growing worse.  And today, my surgeon has prescribed honey.  Like from bees.  That's what I put in the wound.  I thought he was crazy.  But it turns out it's more widely known than I thought.

So THAT, is where I've been.  If folks have an interest, I'll put together a picture tour similar to what I did with my hand for you all that time.  But right now?  I am going to SLEEP.

Today's The Day

Today, the Fed-Ex man didn't knock very loudly.  Or maybe I dosed off.  We're going to say it was his fault though, not mine.  So I didn't know he was here, and he left one of those wonderful tags hanging on my door.

The delivery?

Leuprolide.  It's the injectable medication I am starting to help (we hope) with the endometriosis.  So he couldn't just leave it.  So he took my medicine with him and left.

So I called the pharmaceutical company.  And they put me in touch with logistics for Fed-Ex.  And they put me in touch with their special group that handles the delivery of perishable medication.  And they called the Fed-Ex guy on the phone and told him to come back.

He did.  Six hours later.  And as I was signing, he smiled and said he had no idea what could be so important inside the box... after all how much could one medication cost someone?  Oh, if only you knew what you are so often delivering.

Anyway, I have been waiting and waiting for this stuff to arrive.

And after I opened it and gave myself the first dose... I realized something.  I have almost a full two week vial left from last year.  It expires 9/30.  So I can use it.  Duh.  Of course the stuff we just got now will be useful, since I'll be on this for at least two months.  But still.

And just like I remember, the shots don't hurt a bit, but they leave crazy red splotches on my belly as the medication disperses.  Anybody remember if I was premedicating with Benadryl last year?  I can't for the life of me remember if I was or not... Yeah.  Right.  I didn't share the IVF process here.  I forgot about that part.

And no, I am not currently in any stage of the IVF process.  I am genuinely using Leuprolide to hopefully suppress the endometriosis.

I Will Be Happy If...

I've noticed a lot of people lately talking about how they finally have what was supposed to make them happy.  Kids, a spouse, friends, money, a home, whatever... and I've noticed something.  The ones who are happy now, were happy before.  It seems to have almost NOTHING to do with whatever they wanted.

So.

What will make you happy?

Personally, I will be happy if we pull ahead further in our finances.  I will be happy if I can actually get pregnant before time runs out (actually, I will be happy if I find out time has not run out already).  I will be happy if we can adopt some babies.  I will be happy if we can adopt some older children.  I will be happy if we finish our house.  I will be happy if I can spend more time with friends.  I will be happy if I can be healthy.  I will be happy when I heal from the surgery I had just over a week ago.

But all of that... all of that is nothing when I try to compare it to knowing my God.  I can't even make the comparison, because they are too far apart.

And I realize something... I have to be happy.  Not because it's important.  Really it's not - my lungs work just as well when I'm sad as they do happy.  My finances don't go any further, my life isn't easier, and I'm not any more saved if I am happy than I am if I am sad. 

But people are watching.  Sad people.  Angry people.  Hurt people.  Scared people.  All those emotions I don't like, they feel.  And so do I.  So I let them see.  And then I let them see me happy in spite of it all.  I let them see me happy while we can't fathom how we'll pay next week's taxes and bills, while my uterus is painful empty (it really is painful; part of last week's procedure has made sure of that), while I scramble to find a way to try one last time before surgery takes away my chance for the rest of my life, while I dream about adopting babies and older kids and wonder if it will ever really happen, while our house has insulation showing where there is no drywall and I don't know when the last time I hugged certain friends was, and it's been over a year since I last thought of myself as "healthy" and even while I lay curled from the pain of the last operation.  I am happy.  Yes.  Right now, right this second, I am happy.  I have something that shines so brightly that all of those other real and painful and unpleasant things lose their emotional pull, and I.  Am.  Happy.

Are you?

~Psalm 119:2:  Happy are those who keep His rules, who try to obey Him with their whole heart.

I cannot even begin to TRY to count the number of times when people have heard me express longing for children.  Countless times.  Also, sorrow for the children who I've conceived and then had go on to heaven before they were even born.  I admit, it's been a big focal point for a bit over five years now.

And so many well-intentioned people have said "Just be happy with what you have."  And the reality is, I am not happy "with what I have."  I am not happy about the loss.  I am not happy that my husband is taking a Sunday afternoon nap with no children around him.  I am not happy that the surgeon has said that really, this last surgery was it.  End of the line.  Time for baby or time to move on.  I am not happy that my house is, 3 years later, still a construction zone.  I am not happy that our choices as a family have not meant greater financial prosperity.  None of those things are reasons to be happy.  But truthfully, if I was rich and had ten kids and a mansion and had never had so much as a cold, none of that would be a reason to be happy, either.

The only real reasons to be happy, are not impacted or changed or touched at all by the circumstances of life.  Our salvation, peace, eternal life, hope, confidence, and the fact that Romans 8 promises that NOTHING can separate us from the love of God.  THAT is why I am happy.  I am unshakably, undeniably happy.

And I still want babies.  I still cry sometimes when I think about what could be.  I still ache to hold a child that is biologically related to my husband and to me in my arms.  That may never happen - each day that goes by is a day closer to saying "Okay, nope."  But even if that day comes - even if things get painful enough or I find myself in danger again - and I say "Okay, do it" and the surgeon spends her day sectioning off my abdomen and wrapping organs and taking steps that make pregnancy a very dangerous idea... even then, I will still cry about my desire to be a biological mother.  But while the tears stream and my heart aches, I will also be happy.  Just like I am today.

A Few Things.

First, Lizzie asked who died on the 28th... and I'm not sure what she's referring to?  Lizzie, if you read this and would leave a comment as to why you asked that, I'd be happy to answer.
Second... a leg update.
It hurts.  The tibial plateau (or at least the soft tissue over it) is very inflamed.  And red.  And brown.  And purple.  And bruised.  And there is a bruising all the way up and down my tibia.  It hurts like you wouldn't believe to walk on it.  Which makes no sense, because there's no infection.  No internal damage.  Unless the infection was there before... which I had been wondering about.

Today, my friend called my doctor, to inform him (the doctor) that my leg was really sore and swollen and red and warm.  The doctor gave me a serious lecture about going to the emergency room right away.  Because my leg cannot be messed around with.  At all.  Can't take that kind of risk.  Apparently, it's still... "fragile" and isn't remotely healed enough to be able to handle any further damage.  Or something.  I grudgingly concluded the phone call with "Yes, sir" in response to his demands that I go to the ER "right away" and not wait even an hour.

And then my friend approached with a very well known (and very excellent) surgeon in tow.  He (the surgeon) just happens to be a black belt where I take martial arts.  He checked my leg.  His expert diagnosis?  "That looks like it hurts."  Ya think?!  He proceeded to say that it's an inflammatory response that is sort of creating a negative loop - more inflammation, irritates the tissues that were previously infected and irritated (i.e. muscle compartments, periosteum on my tibia, venous structures, lymphatics... which causes more swelling and more irritation. 

He also said it was an exceptionally beautiful graft, and insisted I tell him the name of the surgeon who did it.  And then he said it looked like a shark bite.  Totally un-prompted, I promise.
That's funny.  Because when nosy people who I don't know ask what happened, I say "Shark bite."  And then they say "Really?"  And I smile and say "What do you think?"  I make it pretty clear with my tone that it's not really a shark bite, but that I also won't entertain any further questions.
We're attempting to install a motion alarm in our stairway and door alarms on our doors.  Right now.  It's 11:00 PM.  It's not going well. 
I wish it was Sunday.  On Sunday, my Pastor is taking part of the service to answer some very important questions for us.  I think we might get rebuked a little bit, but I really want and need to know the answers, so it's all good.
I'm rambling.  Because I'm tired.  And the hydroxyzine has kicked in.  Which means it's time for the Ambien and the lorazapam.  Yes... that's three meds.  As opposed to four.  And we're looking to wean off the lorazapam within the next month or two.

Chronology of an Owie

In pictures, here is what my hand has done over the last three weeks.  This is all the result of having blood drawn from one of the veins in my hand for a routine test.  It formed a clot and for whatever reason, the clot didn't dissolve.  Over time, the bacteria introduced by the blood draw multiplied and formed an abcess inside the vein.  They then spread to surrounding tissue, including my skin.  Officially, it is septic thrombophlebitis.  The two pictures that are NOT of my hand mark the start of each hospitalization.  One showing the three IV bags and PCA meds I had, one showing the goofiness of my doctor and his and my mutual friend. 

The pictures are low quality because they are all from my cell phone.

This post is brought to you in response to some requests I've gotten.

3 Times Crazy

Third admission is behind me.  If there is a fourth, it will be in a city about two hours from here, a city filled with world-famous really good doctors.

The last admission went badly from the moment we walked in to the emergency room.  Strike that, it went badly in the hours prior, too.  Lots of anger and fear and irrational outbursting on my part.  Plus going into shock, which involved six blankets in a 70 degree building, with one of the stronger space heaters I've ever "known" blasting full-tilt in my face while I still got colder and colder and colder (my temp in the ER was under 96).  And me whining about the cold and the fact that the heater "didn't work."  And a spectacular and very mis-placed, poorly timed, and inappropriate display of anger. 

In the ER, we found out that the orthopedics doctor on call was the one that I would never let touch me, ever.  Not even with a ten-foot spaghetti noodle.  She wanted to attempt to aspirate the fluid out of every joint that was swollen, to make sure it wasn't infected.  That means nine joints on one hand.  Nuh-uh no way, not a chance.  Stab through skin and the deeper tissue that we already know is infected and full of bacteria, and into joints that may or may not be infected?  Many times over?  No way.  Especially not her.  We told her that - including the not her part.  She yelled.  Derek yelled.  The ER doc yelled.  I yelled.  She refused to call a hand specialist (she most definitely is NOT) because "they work all day and have lives, too."  The ER doc refused to call because she did.  He refused to call my regular doctor.  Refused to allow us to have a second opinion.

They took me to a room that, well... let me just say it triggered some massively bad memories.  Bad enough that I cried and vomited uncontrollably for the two hours we sat in it.  With grumbling and "harrumphing" from the nurses on the floor they then moved me to, it was off to a different floor, different unit, different room.  I refused to "make a decision" about the aspiration until after the timeline the surgeon set forth, since she had to go home because a full day of surgery awaited the next morning.  Score.  If she was in surgery, I wouldn't have HER anywhere near me with a needle, right?

Not so right.  I consented at about 10:15 PM, too late for the night and I knew it.  But that consent kept me from having to sign an AMA form.

The next morning at 6 AM, my nurse mentioned that this doctor would be in to talk to me about the aspiration and figure out when she could squeeze it into her schedule.  Ahem.  This is not what I planned.  So I told the nurse that I was refusing to see the doctor, at all.  That she could not touch me or have contact for the remainder of the stay.  The nurse said that since I was admitted under that doc, I couldn't get rid of her completely.  And I said I didn't care if she managed things from afar, so long as she didn't get near me.

They informed me later in the morning that I'd be going to interventional radiology, and the radiologist would be doing the aspiration - of one joint.  Seemed much more reasonable, but I've had needles in joints before and knew it would hurt.  Probably a lot, given the amount of inflammation.

My regular doctor came up to see me.  I was freaking out about the procedure for reasons only partly related to the procedure (this is one of those deliberate withholding of information things).  He stayed with me.  Tried to get me to squeeze his hand.  I don't squeeze hands in pain.  Especially hands of people I don't want to hurt.  The procedure itself didn't hurt terribly.  Meaning it didn't make me scream or cry or pull my arm away.  No, they didn't have it restrained in any way.  Just draped and laying on a foam thing.  The grating sound followed by a crunch was the worst, both audibly and feeling-wise.  It was when he was pushing through the joint capsule.  The capsule is very, very inflamed - it looks kind of cool on ultrasound, actually.  Fluid came back clear initially, but the bacteria in my hand are gram-negative so they don't pick up a gram stain.  The culture was taken Wednesday, and since day 5 is Sunday, won't actually be checked until Monday. 

They discharged me yesterday.  Said if the culture grows anything, then they'll call me and I'll have to be readmitted for I.V. antibiotics for a week.  Again.  Meanwhile, that joint is so big and hard and massively swollen and hot, as are the two next to it and the one above it.  The redness on my hand is accented quite well by the purple marker they used to mark the edges (which have expanded well past the marker). 
As I told my doctor when he said "just hold on a while longer, Jenn," - I am all done.  I am out of hold on.  I am out of gritting my teeth and tolerating.  I am out of being patient.  I am all done.  All done.  Maybe in the next couple days I'll get some fight back, but for today, I just don't have any left.

Wow.

Sorry to have left you all hanging.

I stayed home from the hospital for ALMOST 36 hours.  Almost.

When I was readmitted, my temp had gone from 96.8 when I was discharged to 103.9 when I showed up back in the emergency room.  Seven degrees doesn't matter much in weather but inside a human body, it's a really big deal.  Hot stuff. 

Okay, that was across the lame line.  But it made you either smirk or groan, right?

Reality is, I first mentioned my hand to a nurse at the end of December.  I had the fertility doctor check it on January 5th.

I made my first trip to urgent care on January 12th.  No labs were drawn and the only advice was "use lots of heat.  If it weren't for your leg, I'd say this wasn't infected at all.  But it looks similar to how that did, so I'm going to prescribe this particular antibiotic for you for seven days."  I dutifully soaked my hand many times a day, making sure to move it and use it and get it good and toasty.

Nine days later, on the 21st, I was back in the ER with a temp of 100.9 (normally run 96.5-96.8) and my hand looked... rough.  Bad.  Not so good.  Swollen and red and pretty sore.  I had thought I was getting the flu Wednesday night (24 hours after the last dose of antibiotics), and it proceeded to worsen along with the appearance of my hand.  That doctor said that since the first course of antibiotics worked so well (It did?  Really?  How'd I miss that?) he thought I must be one of those "rare people where seven days isn't long enough" and he was going to prescribe the exact same medicine, at the exact same dose, but this time for ten days.  He said that if the heat helped, I should continue it but it didn't really matter.

My husband and I both felt very uncomfortable with the hasty exam (more just a glance than actual exam), the lack of blood work, and the lack of follow up.  Especially since at that point my hand was acting exactly the same as my leg did last year - and the doctor was acting exactly the same as the doctors did last year.  We kept insisting we were uncomfortable and the doctor got more and more irritated, until he finally offered a referral to the wound clinic.  We knew that the 48 hours until I'd be able to see them (if seen immediately) could see things go south really quickly, but at least we also knew that the wound clinic is home to a bunch of very smart, talented, experienced infectious disease doctors and surgeons.

Wound clinic called Monday morning, offering me an appointment less than 30 minutes later.  It's a 40 minute trip in this weather, minimum.  I asked for a later appointment and was put off until the next afternoon.  That night, I did not sleep.  I used heat, I tried ice, I tried compression, I took Advil, I took Zofran, I took Vicodin 7.5 (two of them).  I finally fell asleep at 7:30 A.M.  I slept until noon, and when I woke up I knew I would be admitted.  For what started out as a simple skin infection of the hand, and even Friday night, could have been handled on an outpatient basis if it had been done correctly.  But now my hand was so swollen that it looked fake.  The skin was shiny and tight and deep, dark red.  It was very hot to touch, and I could no longer move my pinkie, ring, or middle fingers.  The pinkie and outside edge of the ring finger were numb.  And I felt generally sick.  Achy, sweats, chills, fever jumping between 99 and 102.9, unable to keep anything down.  I packed some books and clean underwear and socks and a stocking cap along with my favorite pillow, and off I went to the wound clinic.  My appointment was at 2 PM, my blood was drawn and x-rays taken by 2:30, husband got there at 3:00 just in time to watch the orthopedics consult jab an insanely large, thick needle into my hand in an effort to "aspirate" the pus.  By 4:00 I was getting settled into my room and waiting for IV therapy to come get things started.  After five days of high-dose Rocephin and Vancomyacin, with a Fentanyl PCA pump and frequent IV Zofran, I was sent home with Bactrim, Vicodin, Zofran, and Neurontin for the pain in my now-damaged nerves.  I'd been seen by infectious disease, orthopedics, plain internal medicine, neurology, OT and PT, an intensivist, and about a million interns and 500,000 residents. 

I was thrilled to be going home.  Finally, healing and doing well.

I lasted from Saturday afternoon until Monday morning.

When I was readmitted, my hand was blowing back up, I now had no sensation or reflexes below the wrist in my ulnar nerve and limited sensation and reflexes in the others, and my temperature went from 101 when we left home to 103.9 when the admitting nurse took my temperature. 

More Vancomyacin and Rocephin, more Vicodin ans Neurontin, more days on the Fentanyl PCA pump, More Zofran, more doctors, and an operation to remove the abscessed vein (yes, apparently a not-quite-sterile blood draw can lead to the development of not only phlebitis and cellulitis, but also abscesses inside of your veins) and the necrotic (i.e. dead) tissue that was around it, and I was sent home.  After finding out that the infection I was fighting was directly linked with human saliva.  Eeeeewwww.  There is only one person who could have introduced the germs, and that is the technician who drew my blood in December when all of this started.  I was actually asked this past week, by one of the infectious disease doctors, if this infection was self-inflicted.  Um... no flipping way. Besides, how would I have done it?  "Excuse me, Ms. Lab Tech person, before you stab my hand with that needle, would you mind letting me lick it first?"  Seems unlikely.

Now here I am, halfway through February and two months out from the original offending blood draw, and I am struggling hard to stay out of the hospital.  Three admissions might just send me over the deep end.  Well, not so much the admissions... it's the need for the admissions and the fact that this can all be traced to one person and the fact that we aren't ever going to even be apologized to for any of it, plus the fact that I have long-term, likely permanent, damage and loss of function in a previously healthy hand.

I know, I'll let go of the anger and sadness, and I will learn ways of making my hand do what I need it to do, but right now, tonight, I am so very ticked.

MRSA

So, the hand?

It was MRSA.

It snowballed, big time.  It got worse throughout the day on Friday the 21st.  Went to the ER that night when Derek got home from work.

The doctor frustrated me... not because he was a bad doctor, but because he didn't listen to what I was saying.  He felt a second course of antibiotics was the best choice.  That is pretty standard when an infection recurs.  He also felt that since the first course did impact it, he'd use the same kind again.  I disagreed, but he is the doctor, not me.  I repeatedly voiced my concern that this was eerily similar to the progression my leg initially followed this past spring, but he assured me this was very different.  However, he did refer me to the wound clinic.

Monday, things were not any better but hadn't worsened drastically, either.  Talked to my doctor, told him how I felt, and he told me I needed to be seen that day.  I told him they'd refused to work me in until Tuesday.  He called them, and then called me and said that the infectious disease doctors said it would be fine to wait.  He told me to go in if things got worse quickly or significantly. 

Overnight Monday, my fever went back up to 102.3, which is not the 103.9 that it had been.  I didn't sleep at all, until about 4:30 or 5:00 AM.  I slept through until noon, then got up to get ready to go to the wound clinic.  I freaked out when I looked at my hand - it had grown a lot in the 7.5 hours or so I'd been sleeping, and I felt super crummy.  I knew they'd probably admit me or at least run a dose of IV antibiotics, so I brought my backpack with my phone and charger, my favorite pillow, and books to read.

The doctor initially seemed very calm - rude, but calm.  He sent me for blood work and x-rays - I've never walked into the lab with red-edged orders before.  It gets you to the front of the line.  (Note to self - if ever in a hurry, bring a red sharpie for lab appointments.  Kidding.  Mostly.)  In the 30 minutes it took to do those things, the redness visibly darkened and the swelling increased.

My appointment was at 2:00.  At 4:00, I was getting settled into my hospital bed after having seen the infectious disease doctor and the orthopedic/hand surgeon and having had really big, long, painful needles jabbed into my hand in an attempt to aspirate "infectious matter" for pressure relief and culture.

It got worse throughout the evening Tuesday.  Wednesday, the put me on a PCA pump (pain control) with fentanyl, and I was getting pushes of tordal and taking hydrocodone by mouth.  My hand was so swollen that the skin started getting dark red lines where it was starting to tear.  My temperature was fluctuating up to 103.  They had me on rocephin and vancomyacin.  Plus the zofran and benadryl and pepcid to control the effects of the vanc. 

Yesterday, things started to pick up pace improvement-wise, but the pain changed and worsened - the smaller my hand got as the swelling went down (and the bigger my forearm and elbow got as they continued to sell), the worse it hurt.  The doctor on call was a fairly new resident, who insisted that there was no reason for the pain and chose to discontinue the PCA pump and cut the amount of pain-relievers down to 1/16th of what I'd been getting right up until she made rounds.  Talk about a loooooong night.

This morning, the regular attending came in, took one look, and got me some hefty doses of the meds I'd been given previously, and they didn't really help.  I saw my hopes of going home slipping out the window, and slipping fast.

Neurology came in and found that my ulnar nerve is very displeased with all that's gone on and has ceased proper function starting just above my wrist.  I was told it will recover, but it'll take "up to two months."  Two months... I can handle two months.  I don't like two months, but it's better than forever.  Besides, I have a God who is bigger than one tiny little nerve.  And they gave me... something... for which I can't remember the name.  It's a medication that was made to treat seizures, but didn't work for that, but someone noticed that in people with nerve damage, it really helps that sort of pain.  That medicine, paired up with hydrocodone and ibuprofen (and zofran) got things under control.  I went to occupational therapy, got to sit with my arm in a whirlpool and then get a thorough massage, and then they gave in and let me go HOME.

It feels so good to be here, in my house with my cats and ready to crawl into my very own bed. 

And it turns out, the infection was MRSA.  I've got five more days of oral antibiotics and then in a week I follow up with infectious disease.

Moral of the story?  Apparently, it's that you should go to the hospital every time a blood draw results in more than a super-tiny bruise.

Okay, not really.  The actual moral is that if you jump on top of infections early, like was done this time, and you get proper and prompt treatment... you may still spend hospital time, but they don't have to start chopping chunks of flesh out of your body.  I'm thankful for my friend being pushy and not letting me shrug it off or say "oh, it can wait."  Thankful for my doctor being mean and riding me about getting it rechecked sooner, and calling infectious disease to make them get me in sooner (they were going to give me an appointment Friday, i.e. yesterday).  If not for those two, I'd have crawled into bed and gutted it out until Wednesday or maybe even Thursday before going to the emergency room, and it'd have been a much longer road to recovery, probably involving surgery and permanent damage.

Also, if not for those two, the information board by my bed wouldn't have had the following on it:  APPTS (supposed to be an abbreviation for appointments) - No, she lives in a house.  Get it?  I know, I know... apartments only has one P, but it was funny at the time.  The doctor and friend thought so, especially.

Leg Update.

Have had a few people wondering how my leg is doing... so I thought I'd post an update.  I am 5.5 months post-op, and almost 33% of the way through the "active healing" phase.

The graft is doing well, after I split it open a while back.  Other than the scars from that, it looks pretty good.  It's turning colors, and is closer to the color of my regular skin.  There's something going on with one of the muscles in the front of my shin - it hasn't functioned since I bruised and split things. 

Yes, I bumped the contrast a little on this, so you could see the outlines of the muscles.  See that big gap in my shin?  That's not supposed to be there.

It's hard to sit idly by as adhesions form between the graft and the muscle facia, since I know eventually they'll tear free.  Surgeon sais absolutely no efforts are to be made to stretch or break them until after that 18 months, though, so... I watch.  The medial edge of the graft is adhered to my periosteum.  THAT part of it actually really hurts.  Very sensitive to the touch, very uncomfortable if it gets pulled on.

But over all, I am thrilled with how well it is doing.  It is healing, I have TWO functional legs, I am alive.

And as a friend said the other day... it's starting to look like a leg again.  :)

Stream of Conciousness (Or Something)

If I wasn't typing this on my phone, I'd show you a picture of the couple today and tomorrow is all about.

But I am.

Anyway... out of town, in a whole other state - one filled with corn - doing photography for a wedding. she (the bride) and her family mean a lot to me, and to be able to do this is an amazing privilege.

We saw a big, VERY green bus today. It said "Bowling Bus" on the side. My husband's navigation system on his phone told him to turn off the highway and into the middle of a cornfield. Or so he says.

When we left the City early this afternoon, my husband turned on his navigation program. He said, "Wow! It's THREE HOURS away from here?"
"Yes, it is."
"I didn't know that."
"But you looked at the map. You left Mapquest up on your computer. I saw it."
"Well, yeah, but I didn't realize how FAR it really was."
"Ok... so... did you just think that the middle of [the state next to us] had recently moved closer to us?"
He laughed. Hard.

I get to take most of my shots from the platform in front of the sanctuary tomorrow. Not feeling nervous or conspicuous at all... nope. Not me. Or maybe I am...

I also get to spend the entire day with the women in the wedding. Which I am for real looking forward to.

I decided 24 hours was close enough to the end of the no caffiene restriction the surgeon had ordered. My bladder feels like it's going to explode. I think she should have said no caffiene for at least THREE weeks.

How hard (or easy) is it to get addicted to vicodin?

I am running out of things to say.