It's Been Awhile

So, I have been very delinquent in the upkeep of this blog.

Why?

To be honest, I haven't felt like I have anything compelling to share.  But I do miss the writing, so I may just get back into the swing of things - time will tell.

Lately, I've had a barrage of medical problems.  First, a long battle with recurrent infection in my leg, followed by a brief break and then a battle with unexplained weight loss, followed by a bite from a deer tick (which I was unaware of, but I'll get to that in a moment), followed by a bite from a brown recluse spider which turned necrotic and now, two months in, is still healing, followed by waking up one morning with Bell's Palsy, followed by a positive Lyme test (hence knowing I got bit by a deer tick, and the high titer indicates it's been a while).  So now I am on steroids for the Bell's and antibiotics for the Lyme.  I have a 3 inch defect in my leg which is healing daily, but it's still taking it's time.  My right side of my face doesn't work right now - not my mouth, not my eye, not my forehead or my cheek.  I've got my eye taped shut as that's the only way to stop the constant burning and watering.

But in all this?  Yes, in all this, my God is faithful.  He hasn't left me or forsaken me.  He has done much good.  He protected my kidneys in the middle of a systemic reaction to the brown recluse bite.  He is healing the result of that bite quickly.  He kept me from fear when I woke up with half my face not functioning.  He allowed the steroids to work quickly to reduce the pain in the nerves of my face.  He had the doctor test for Lyme disease, of which I've had no other symptoms.  And He will continue to prove Himself faithful - it's how He is.

Deuteronomy 7:9

Know therefore that the Lord your God is God; he is the faithful God, keeping his covenant of love to a thousand generations of those who love him and keep his commandments.

 

Psalm 71:22

I will praise you with the harp for your faithfulness, my God; I will sing praise to you with the lyre, Holy One of Israel

 

Psalm 89:8

Who is like you, Lord God Almighty? You, Lord, are mighty, and your faithfulness surrounds you

 

1 Corinthians 1:9

God is faithful, who has called you into fellowship with his Son, Jesus Christ our Lord.

 

Hebrews 3:6

But Christ is faithful as the Son over God’s house. And we are his house, if indeed we hold firmly to our confidence and the hope in which we glory.

P.G. With No Baby

I've been told  many, many times that "whatever is wrong is self inflicted" in reference to my leg.  And I've been assured that it definitely couldn't hurt as much as I say it hurts.  I've been told I'm not sick, that there's no physical reason for the symptoms I battle daily.

But recently, that's all changed.  My doc believes in me and has fought to help me heal, and has endured the highs and lows as my leg gets better and worse unpredictably.  And finally, there's a word for what I am fighting.  Two words, actually.  Pyoderma gangrenosum.  Look it up if you want, but be warned that most articles include graphic and rather unappealing pictures.  Basically, it means my body attacks itself from the inside out (so in that regard, I suppose you could call it self-inflicted).  It favors previously damaged skin, but I have no control over when or where or how badly it will do so.  When it flares, my skin first turns red, then warm and spongy, then blisters, then peels and rapidly erodes  until I have ulcers muscle-deep and usually bigger than a silver dollar.  It is excruciatingly painful - far more so than it should be given the wounds themselves.  It has coupled with a disturbing lack of immune response to allow infection after infection to form, for which I am almost daily at the clinic receiving treatment. 

Now, that said, I'm not trying to whine.  I honestly have a beautiful life, made that way by a faithful God.  It's just that people often wonder what it is that is actually wrong with me - what keeps me so sick so much of the time.  And this is certainly not the only problem, but it is a big one.  One I'll overcome.  And when I do, God will get the glory because it will be by His grace.

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!

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.

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.

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.  :)

Das Boot.

This is a leg update, just in case you want to quit reading now. 

It's been REALLY sore the last week or so - I think from nerves regenerating.  Or something.  I've been getting some spots of superficial sensation back, but the spatial awareness isn't there at all yet.  Tibial plateau is still very sore and bruises randomly (and often), but I haven't had a fever in over a month.  I've been working out and for the most part, tolerating it pretty well.  By working out I mean doing Martial Arts and pushing as I do.  But over all, in spite of the soreness, I feel like it's been doing really well.

Today, I put some things into a cave for a friend.  Heavy things.  That I was dragging in a big blue toy bucket with one hand, while I used the other hand to hold a rope and walk backwards down a VERY muddy incline.  A very steep, very muddy incline.  And then I climbed up for a second load.  And then climbed up to untie a rope to use down in the cave.  And then climbed out again.  And then built a fire (I'm an excellent fire builder).  At some point, either in dealing with the cave or in breaking up wood for the fire, there was an impact to the back edge of my graft.  It didn't hurt - I never felt it happen.  But now there's a nasty bruise underneath the graft, the muscle compartment is rock-hard, and the skin graft is split in a few places.

SO... I'll be backing off on the physical exercise for a week or two, and wearing BOOT again until the swelling goes down and the muscle softens back up.  It's frustrating, but... it will be okay.

**I am editing this to add a picture?  Why?  Because you guys asked for it.  I'll leave it small for those of you who might be a bit... squeamish.  But this is what it looks like if you happen to have a skin graft wrapped halfway around your leg, and you subsequently happen to bang it into... something.

Are you sure??

On July 23rd, as you may remember, I had surgery.  To "treat" endometriosis.  There was a complication this time - the first time ever - that rendered my bladder defunct.  Or something similar.  Regardless, for 48 hours, it took a lot of work and pain and fluid to get my bladder to give up any of its contents.  ANY of it.  Never mind emptying.  That was entirely out of the question.  I literally begged the nurses to get the doctor to let me go home.  They did.  Not sure how, but they did.  Doctor called the next morning, and was unhappy with the fact that things were not working yet.  I was unhappy too - do you have any idea how much an overly-filled bladder hurts??

Sunday morning, I could barely move, it was so full and so sore.  I didn't really think three hours would make much difference in the grand scheme of bladder-life, so I sent my husband to church.  Asked him to have our Pastor wear a prayer-cloth and bring it home for me.  When my husband got home, I took the cloth, tucked it in my waist band and went back to sleep.  I did so with the expectation that I would wake up and have him take me to the hospital.  Very faith-filled thoughts, huh?

Regardless, I woke up two hours later and my bladder let loose.  It felt amazing.  As in I cannot begin to describe the relief.  I'm not sure how much fluid it takes to change the level of water in a toilette that much.  I do know that when I left the hospital, my final bladder scan showed about 1200 ml's of urine (the max in a healthy bladder is supposed to be between 200 and 600).  They didn't tell us this - I looked it up in my on-line health record.  I also know that there is no way it ever dropped below that.  The tiny amounts I could squeeze out were barely a drop in the bucket. 

All of that... and then the "miraculous urination."  And even with that... I hurt.  Really hurt.  My bladder, which is functioning at half-thickness in many locations after as much endo as could be removed, was.  My uterus, which was stuck to things and covered in endo.  My ovaries, which had worked their way into my peritoneum (abdominal lining) again.  My intestines.  Stomach.  Liver.  These are the things I can distinctly feel.

Why?  Why do we do this instead of choosing to remove my reproductive organs and hit the remaining endo with chemotherapy?  Which could actually let me live the rest of my life with much less pain?  Why are we trying to figure out a way to pay for expensive "reproductive assistance" this winter?  Why do I want to go through the pain that will be involved in conception, the discomfort of pregnancy, hours of labor... when adoption is right there in front of us?  Why am I not terrified of the possibility of my heart going completely nuts while pregnant?  (My chart, by the way, states that I have SVT and AV-Nodal Re-entrant Tachycardia.  Both.  Listed as separate problems.  I guess they still haven't really made up their minds).  Or of scar tissue impeding delivery and requiring a c-section?

A good friend asked this today.  Part of my answer isn't really fit to share here on this blog.  But part of it is.  The part that says... I want the opportunity to be part of that kind of miracle.  The miracle that takes two microscopic pieces of two totally separate people, and out of that, an entirely new person grows.  The miracle that places a soul and a spirit inside that body.  I want to hear the screaming that heralds new life - new life that came from within my womb.  I want to grow impatient, large, and clumsy while this new life grows inside of me.  I want to do this thing, this amazing, entirely unique, miraculous, unparalleled thing that is called giving birth.  I want to add life to this planet I live on.  To contribute.

And this is all just the reasons I want to actually give birth.  There are so many other reasons to be a parent.  Which is a separate post and, at least in my heart, a separate dream.  I mean, yes, giving birth does have a tendency to lead to parenthood... but parenthood can be reached without the birth part.  Well, at least without me doing the birth part. 

I feel like I should know Moses pretty well by now...

Yes, I am referring to the Moses found in the Bible.  You know, the guy who saw a burning bush that didn't burn, and threw a stick on the ground and it became a snake... the guy who led the Israelites around and around and AROUND the same stupid mountain because they couldn't seem to stop whining?  Yeah, him.

I feel like I should know him.  We've got something in common...

I'm not in the middle of a real desert, walking in circles around a real mountain.  But I am definitely walking where I've already walked.  I have just taken yet another trip around the mountain I usually hear referred to as "surgery." 

Fifth time I've had surgery to treat endometriosis.

I honestly have no idea how it went - all Derek remembers is that the doctor said she did "a lot."  Which I could have figured out by doing the math (woke up over six hours after I walked into the OR).  Also would have been able to figure it out by how much stuff hurts... and all the places that hurt.  ANYway...

This was the first time I've had any sort of complication from it.  My bladder flat out was NOT working, at all, for hours.  When they let me go home, it was with the understanding and expectation that if it didn't improve, I'd have to come back in and stay for a while to get things straightened out.  When I got up Saturday, it worked... briefly.  Then it quit for most of the day, until I felt like I was going to explode.  Then it sort of worked again...

Sunday morning, it was so full, and I was so sore, that I chose to stay in bed.  But I did ask my husband to have our Pastor wear a piece of cloth and then bring it home to me (if you want to know why, read in the Bible how people merely touched the clothing that Jesus and some of his disciples wore and were healed).  He did.  I put it next to my bladder (tucked in the waist-band of my pants) and took a nap for a few hours.  Got up... and it's been working perfectly since.  I never thought I'd be so happy to urinate... but boy-howdy does it feel good!

Anyway... I will update once I see the doctor (it'll be almost a month from now) so that those who want to know exactly what was done can satisfy their curiosity.

What you see over there to the left is my post-op belly.  Full of fluid and blood.  It really does resemble a baby belly, doesn't it?  I let my husband practice "maternity" pictures on it.  If I'm gonna be this huge for no good reason, I may as well have SOME fun, don't you think?  (And yes, we are absolutely certain there is no baby in there.)

Stock in 3M

So I've been thinking... maybe my husband and I should support ourselves financially.  By taking out stock in 3M.  You know, the company that makes VetWrap.  I use a roll every day.  For my leg.  Speaking of leg... I think it's time I quit hiding it and post an update.

This is what it looks like all wrapped up the way it's supposed to be.  VetWrap comes in a lot of colors, by the way.  In case you were curious.  I use the VetWrap for the fact that it creates and maintains even tension.

Underneath the VetWrap, I have an ace bandage.  Not a regular one - one that is twice as long as normal.  It holds my foot in alignment, at least most of the time.  It would not be adequate without the VetWrap though.  The tension, if left as you see it below, would migrate and slip, and would fail to control the swelling or assist with circulation.

Underneath all that ace bandage, I have a hefty layer of 6-ply gauze.  I'm not actually oozing or bleeding or anything.  But the gauze is important.  I have learned how to carefully fold it so that it provides padding and also some protection in the instance of shearing pressure over the graft.  Plus, I can gob massive amounts of aquaphor underneath it, and keep everything soft and happy.

The final thing that stands between my leg and the world at large is Aquaphor.  Maybe I should take out stock in Beiersdorf Inc. (the makers of Eucerin and Aquaphor) too.  I use great gobs of it on my graft site every morning and night.  It is, according to the plastic surgeon, the most important thing I can do for the graft.  Keeping it soft helps to gain thickness, prevents it from splitting and causing major issues, and enables it to stretch a little if it is bruised, instead of breaking open.

Okay, this next one is the one that embarrasses me.  Please no mocking.  But also, please don't look away.  I'm not trying to engender sympathy, not trying to say "poor me."  I'm trying to say... be careful.  What you see below is the result of a relatively small self-inflicted cut on my shin.  It got infected.  The bacteria was resistant to treatment and ate away a LOT of flesh, including some important blood vessels and a nerve.  It also inflamed the lining on my tibia, which caused enough internal swelling to significantly damage the interior nerve.  I have no sensation below that ugly hole, short of some intermittent tingling that cannot be interrupted.  Irritating.  But, I am blessed.  The infection nearly took my life.  I am not only alive, but I can walk.  On my own leg.  It looks pretty stupid, but it is attached and mostly functional.  The surgeon was able to move around existing muscles to make up for the loss of one of my shin muscles.  That's why the graft looks so lumpy - the muscles are still settling into their final positions, and are bulking up a little unevenly.  I expect it to improve over time.

Anyway. for the curious, this is an update on how my leg is doing.  I have some big leg-related news pending right now... I will post when the time is right.  Meanwhile, I hope this answered your questions. 

I'm Alive.

It wasn't all that long ago that I wondered how long that would be true. The alive part, that is. I remember the surgeon coming, telling me that the VRE infection I had developed in January was still rampant. It grew both in my wound and blood cultures. For those of you unfamiliar with the abreviation, the VR portion stands for vancomyacin resistant. That means that they literally don't have anything left to treat it with. They were pumping me full of three kinds of antibiotics, plus the antihistamines and steroids required when giving me levaquin (I am allergic). Those would take care of some of the bacteria - the other kinds. But the VRE? The doctor said it was up to my own body.

God was merciful. I initially caught the infection along with four other kinds of bacteria. Most likely from someone who didn't wash his or her hands adequately before applying gloves and doing a dressing change while I was hospitalized. They told me then that there was nothing they could do about the infection. We all thought it had abated, until nearly three months later when my shin literally started rotting off.

God was merciful. In spite of the fact that the original wound was self inflicted, and in spite of the fact that I was falling apart in so very many ways, He saved my leg. And He saved my life.

I was thinking about this tonight in church, and Psalm 143 came to mind. I've got it below for you to read. It just seems... fitting.

O Lord, hear my prayer, listen to my cry for mercy;
in your faithfulness and righteousness come to my relief.
Do not bring your servant (me) into judgment,
for no one living is righteous before You.
The enemey pursues me, he crushes me to the ground;
he makes me dwell in darkness like those long dead.
So my spirit grows faint within me;
my heart within me is dismayed.
I remember the days of long ago;
I meditate on all your works and consider what your hands have done.
I spread out my hands to you;
my soul thirsts for you like a parched land.
Selah. (Which means meditate on this.)
Answer me quickly, O Lord;
my spirit fails.
Do not hide your face from me or I will be like those who go down to the pit.
Let the morning bring me word of your unfailing love,
for I have put my trust in you.
Show me the way I should go,
for to you I lift up my soul.
Rescue me from my enemies, O Lord, for I hid myself in You.
Teach me to do your will, for you are my God;
may your Spirit lead me on level ground.
For your name's sake, O Lord, preserve my life;
in your righteousness, bring me out of trouble.
In your unfailing love, silence my enemies;
destroy all my foes, for I am your servant.

An Un-Finished Product.

So, right now, my leg is almost a finished product. At least as far as my plastic surgeon is concerned. The graft has taken very well, and that's what his job was. He's proud of his work. And really, he did do a good job. The Hole, as I call it, is completely covered with skin/scar tissue.

But, and this is a big one... it's not finished. I am currently able to walk on it, but not very well. No proprioception (the ability to tell where it is at) and no feeling in most of it. Medically, there is nothing that can be done. According to medicine, I will always have The Hole, and it will always be super sensitive. I will always have a nerve deficit, and will be unable to regain a lot of the function that's been lost.

But there's something even bigger than that. I refer to Him as God. You know, the Creator of the universe? He amazes me with His love and His faithfulness. He is my provider. My healer. And with Him? Exceedingly above and beyond that which I could ask or even dare to imagine. That's what He'll do for me.

I can't honestly tell you what my leg will be like when He is done doing what He's doing. I don't know how much I'll feel, or what I will be able to do. I don't know if He will get rid of The Hole (He can, you know - He can do anything), or minimize it, or if it will always be as ugly as it is now.

But I DO know this: His mercy, shown to me in spite of the fact that I picked up the blade, I made the cuts, and I ignored His pleading voice... His mercy has left me standing. Do you get that? STANDING. I can stand up. I have two legs. Both of them work well enough that I can stand. And I can walk.

Today, I visited a friend who was working in the long-term care unit of a local hospital. The people there can't say what I can. Many of them will never walk again, this side of heaven. It wasn't all that long ago that I lay in a hospital bed, my leg feeling like it was on fire, and wondered if I'd still have two legs the next evening. It wasn't that long ago that a physician advised me I should be prepared, because a lot of the bacteria that grew in my wound culture was completely resistant to treatment. It wasn't that long ago that I quietly pleaded for my life. So in a way, I do get what those people are going through.

But in a much bigger way, I don't. The reality is, "The Worst Case" has already happened to them. For me, it was a future possibility. At times, I was told it was a future likelihood. But, I have received MERCY. I cannot complain. Yes, my leg is hard to use. Yes, my knee keeps getting wrenched because my foot floats to some some absurd angle mid-stride. Yes, I lay awake at night unable to sleep because my leg is covered in goosebumps and quivering and shaking and jerking.

But there's more. Because I can stand on my own two feet. I can walk down the long hallway of a rehab unit to visit a friend. I can get in my car and drive. My foot has a pulse despite significant arterial damage. My skin graft took, the first try. 100% of it. I stood in front of a Martial Arts class last Thursday, and taught. Next week, I'll stand in front of a group of women and endeavor to give to them what's been given to me.

I'm not ready, yet, to share what is left of my leg. It isn't pretty. It isn't completely healed. I still have a huge red rectangle where the doctor took skin for the graft. I still have to have it wrapped all of the time, to try and prevent swelling. But you know what? I am ready to share that my God has preserved my leg. I still have it. It is still useful. And, despite so many emotions saying otherwise, so am I.

So am I.

Really Short.

So tonight's post is going to be really short. I want to write about connections - and will do so soon. I also want to finish out my series on the love of God.

But right now, I am under the influence of some strong medication, and do not want to risk posting something crazy, so I'll stick to just a general update. My leg is healing - during the dressing change on Thursday, we saw PINK SKIN underneath the sewn-on dressing. Actually, it's stapled on. But whatever. The doc has sewn a dressing over the donor site, some yellow mesh-type stuff. And over the graft site, he stapled some sort of peforated clear stuff that reminds me of plastic. It's great, because it means that dressing changes aren't ripping away newly grown in and healthy tissue.

As for pain, it comes in spurts. Tonight, there's lots of it. Last night, there wasn't. When it gets really sore, my entire leg gets covered in goosebumps, but no other body parts do. It's wierd. I still have a gigantic dressing/cast - a half cast wrapped on with large quantities of cotton batting to keep things soft and comfy. Still allowed only 20 minutes below waist level every two hours. Still no weight bearing or moving the joints above or below the graft. Starting to itch something fierce, meaning healing is definitely underway (as if the PINK SKIN underneath the dressing wasn't enough).

Saw the fertility doc yesterday. No, we're not doing treatments right now. Yes, we're looking at surgery again to address some adhesions. Yes, we will evenetually try another round of treatment. Yes, we're aware that now is not the best time to do so. So's the doc. We're all on the same page.
Yesterday, I ALSO saw my counselor. Have I mentioned that he is literally an answer to prayer? A God-fearing, God-LOVING, experienced therapist who knows what I need and how to get me there. It's one of those things that has been making a huge difference in my journey toward "healthy and whole."
For tonight, that's all folks.

Update. Graft Is Good.

Saw my graft site today. It looks really good. The skin is pink (full of holes, too). The edges have all adhered properly, everything looks as good as possible. I didn't realize that there would be STAPLES in my leg, but... I'll get used to it and there's only a few. I also didn't realize how much the donor site was going to hurt without the wound V.A.C. on.

So I made a choice today to spend another day or two here, receiving some I.V. pain meds and anti-inflammatories. Feels a little selfish and a lot wimpy. However... that's what I've chosen.

I also found out today that it will be a minimum of 3 weeks before I can begin any weight bearing on my leg at all. For now, it is allowed to be below heart level for a total of 20 minutes every 2 hours. If you think about it... I can go to the bathroom and that's about it.

But all in all, things are doing well. That's all for tonight - I'm off to watch a movie as I fall asleep.

It's a Heaven Day Today

Today is post-op day 3. That means that the day after tomorrow, I may get to go home. Which would be fantastic.

However, having spent the last five months fighting to get this thing healed up, I am not going to argue with anything the surgeon says or recommends.
For the most part, the care I have received here has been phenomenal. The therapist who leads my DBT group stopped by to give me the homework from the group I missed. The psych. nurse who assists with that group came down today and spent nearly an hour - it was actually quite helpful.
My psychiatrist has been in at least twice every day, making sure that as my body gets all wonky from the surgery, the psych meds are adjusted as needed. Have had a few nurses and/or nurse's aids who are rather bitter that my "bed rest" does not involve a catheter or bedpan. Not sure why - it's less work for them this way, and it's definitely less traumatic for me. If the surgeon had not agreed to the modification, the psychiatrist would have prescribed some pretty serious sedatives.

Plus there's the whole laptop that's been supplied for my use. And the fact that some friends have allowed me to borrow some of their movies.
I guess I don't really have anything else to update you with. The wrappings (half-cast and LOTS of padding) won't come off until Sunday, and we won't know if the graft took, or how well it took, until then. Can't say when I'll be home, because nobody knows.

But I do know that when I get there, my house will be amazingly clean. My wonderful aunt Barb came over today, and she worked hard (very hard, from what I hear) to make my homecoming easier and safer. Extremely grateful.
My grampa's sweet, dear sister Hazel has stepped into eternity to join that cloud of witnesses. Those of us still here will miss her, but truth is, she's never been better than she is now. Today is her heaven day.
Specific prayer requests - rapid regrowth of skin at the donor site, and rapid growth at the graft site. Less of the pins and needles sensation, less itching. And it'd be great if the really persistent and very uncomfortable aching in my tibia were to ease up a bit.
So, that's all I've got for tonight.

Day 2. Or 3. Depends how you view it.

Had my surgery early Tuesday afternoon.

There were no complications. The doctor wasn't able to do as much reconstructing as he wanted, but that is okay. He got the skin graft in place, put the biggest splint/bandage on my leg that I have ever seen, and is very optimistic that the graft will take.

I'm hooked up to a hospital grade Slurpee now, which is a pity. I miss my little one.

This bed rest thing... there are people who do this for months at a time and they stay sane. I don't get that. I suppose maybe if I were actually miserable, it wouldn't be such a bad thing, but the truth is, they've got my pain under control and I feel pretty great.

Fortunately, they do supply us with laptops to use. So I can tell you all in real time that I am doing well. Just ordered a late lunch (like 4 hours late - whoops). Will be taking a nap sometime shortly thereafter, unless the pigeons outside provide me with adequate entertainment. We shall see...

Scheduled Post # 2

So today is the day after my big day.

And I am excited. Finally, after five long months, my leg can start to heal.

I want to be able to do so much. Walk more than a block at a time. Run. Jump, even. Enjoy intimacy with my husband. I want to go to martial arts classes. I want to become excellent again. I want to be able to help teach WISE. So much that i haven't been able to do, that I will be able to do then. When this is healed.

Thank God for good doctors and for modern medicine.