What I Should Have Said

It hit me early, early this morning.  I was driving home, smiling as I approached one of the small towns between here and The City.  Glowing snowflakes adorn each light post from one end of town to the other, and it is especially beautiful at midnight with real snow gently falling and the world silent and dark all around.

But it was there, in that moment, that words spoken earlier echoed in my head.  Eyes desperate for hope had looked into mine, and the words "I just struggle to believe I'm worth standing up for at all" stung my heart.  I answered honestly and quickly, saying "yes you are.  I would stand up for you."  Which is well and good, but woefully inadequate.

What should I have said?

I should  have said...

You are precious.  You are the only you that there has ever been and that ever will be.  The Creator of all that is, created you specifically and exactly for His purpose.  And He loved you so much, that He allowed His SON to come here to this earth as a baby.  A tiny, helpless child, utterly dependent on two flawed human beings.  God Himself, did that.

But it doesn't stop there.

He watched His Son grow and mature, becoming the greatest man the world has ever known.  He was, after all, fully man, but also fully God.  And do you know what this flawless, sinless God-man did for you?  He literally allowed his flesh to be ripped to shreds, giant spikes driven through His hands and feet, and a crown of thorns driven into his head before he died.  And He endured that death so that he could literally go to hell and stand up to the Devil himself on your behalf. 

And if the King of Kings, the One we are celebrating right now, did that for you... then any estimation I may have of your worth is trivial and certainly falls short.

That is what I should have said.

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!

My Precious Daughter

My dear Annaliah,
Today is your day.  The day you were predicted to be born.  The day, five years ago, when we expected your arrival.  I had picked out music for you to hear after you were born.  I had started your baby book, with a letter from me, and from your daddy, and from your grandparents.  I had felt you moving, felt the thrill of life that was separate and yet entirely dependent on me.

And then, you went to heaven.  You didn't wait until December 17th.  You met your Jesus months before that.  I know that you are safe, that you are warm and happy and not alone.  It isn't for you that I mourn... it is for the relationship I so desperately wish I had with you.

It is for sticky fingers and maple syrup kisses and sandy hugs.  If you had been granted an earthly life, you'd be around five years old now.  Do you know that at this age, I could start teaching you martial arts?  You'd still be too young for class, but on our own, I could show you things.  You could start learning the lessons that could shape your entire life.

If you were here, you would never lack for hugs and kisses.  Not from me, and certainly not from your daddy.  He would have delighted in you the way that only fathers can, and you would have grown up knowing that you were truly cherished.  If you wanted to marry, you'd have met a good young man, because you would already know what love and respect and honor looked like.

Sweet Anna, on your day this year, I am grieving more than in years past.  I used to think that maybe some day, you'd have a little brother or sister that could live with me here.  Someone who could absorb the love that is burning inside me, breaking my heart.  But I know now, that is not to be.  My body just isn't capable of doing that.  I know you've got your brothers and sisters there in heaven, though.  For that, I'm thankful.  I am glad there is such a place, for you and for them.  I am glad there is a Savior who loves you.

This year, you got to meet one of the Better Men.  You see, Anna, there are regular men.  And then there are good men.  And then there are Better Men.  Jim is a lot like your great-grandma Eileen.  Passionate for his God, gentle and generous in spirit, a person of integrity... and someone who had an unusual love for children.  Saying goodbye to Jim has been a little easier, because even though it hurts me to live here without him, I know that now, you get to be with him.  He isn't family biologically, not here on earth.  But your old enough now to start understanding that sometimes, families aren't made of biology... they are made of faith.  They are made of trust and love and loyalty.  I like to think that you know your family there... and that you know Jim and Roy, and have played with Natalie, and with Judith's babies.  I wonder if you've met my brother?

This year, I am sad as I think of all that I have lost.  All that I have missed.  But that sadness, dear child, is not all consuming.  There is also joy.  How well do you know Billy?  Has he told you how his cousin and her parents pulled me back from the destructive path I was on, and into their own family despite their horrible grief?  Do you and him share a bond - children whose mothers question their own responsibility for the end of your time on earth?  I am joyful, Anna, that you know this young man who changed my life.  Because I do not know him.

I wonder if you've met Grandpa Jean yet.  I remember sitting on his lap, as he gently traced my face with his fingers.  His eyes were unseeing, and yet he said I was truly beautiful.  I asked how he could know, and he said he could see me in his heart.  Anna, that's what I do.  I see you in my heart, and I know you are beautiful.

I'm not coming Home yet, my child.  I thought I was, several weeks ago - and the doctors did too.  But God spared my life, and I am still here on earth.  I have so many things to finish, so much work to do, so many people to love.  I long for heaven, though.  I long to hold you, to see you, to hear your voice.  I long to bow before our King beside you.  You may be physically unreachable, but you are always close to me.  And like Grandpa Jean... I know you are beautiful, because I can see you in my heart.

And I know heaven... heaven is for real.  I'll be there when it's time.  Maybe you can come with Great Gramma and meet me at the Eastern Gate.  When I get there, after Jesus, you are the first person I want to see.

I love you for always.

-Mommy

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.

Happy Birthday, my Beloved

Today, my sweet, wonderful husband had his birthday.  I am so proud of who he is becoming and the ways he has grown.

Together with him, I have laughed and cried and sang and danced. 

He shows me the beauty around me when I get so wrapped up with myself that I can't even see.  He never responds to my griping or moaning or meanness in kind - he is gentle and compassionate.

He supports our family financially (for a variety reasons, none of which are on the table for discussion tonight).

He is better than he knows.

I am so very thankful that he chose to marry me... and even more thankful that he was born and lives. 

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.

Not Me Monday

Long ago, in a frozen and windy land, a person named MckMama decided to throw a large blog party.  The purpose of the party was to help those who participated have a chance to be honest, telling about those things that they might otherwise try to hide.  In sharing, there was a decrease in guilty feelings and an instant and significant increase in laughter.

So, in honor of this weeks Not Me Monday, here I go.

In the last week, the following things most certainly did not* happen.

I did not spend the entire day Tuesday with the best friend a person could ever ask for, and that best friend's mother.  The purpose of the trip was not to drive a couple hours to see a specialist regarding a not good at all diagnosis, and to receive less-than-good news about her progress (or lack there of).  But if I did do that, I would want you to pray with everything you've got for my friend, Elizabeth.  Specifically, I would want you to pray that medication would begin to be effective, and that the damage to her vision would somehow be reversed.

On that same imaginary trip, I starved.  I did not accompany them to an extraordinarily delicious Mongolian grill, wherein people are allowed to compile their own choice of ingredients, and then surrender them to the "Grill Warriors" who proceed to make steaming hot plates of whatever you want and present them to you straight off the grill.  I did not fail to believe my friend when she said it was really easy to load so much onto a plate that you could only eat one or two at most.  And I did not end up leaving half of my second plate, on the plate.  I haven't been trying to find an excuse to go back ever since, either.

Since I'm on a roll with this imaginary trip I took... after dinner, my friend and I and her mother did not find ourselves at a well known department store, trying out the display beds.  By laying on them.  We did not discover that some refrigerators have "MEAT FISH STORAGE" drawers and find it hilarious.  We did not laugh until tears came out of our eyes as we tried to come with a way to ask why do you have AC adapters inside your display dresser, and what exactly do the DO for said dresser, since we knew we couldn't ask it with a straight face.  We did not marvel at treadmills, we did not sit in lawn chairs, we did not spend 30 minutes in a tiny kitchen store mocking some of the more... unusual devices.  We did not laugh and smile and enjoy our time far more than seems possible on a trip of that location.

Not me.  Not them.  Not us.

I did not work at a Samurai Sword Show for four days.  And while in the car on the way to the show I did not work at, I did not make a phone call to the biggest, most popular news station in that area to inquire whether or not they would be present to do a news piece on the show.  When the man answered, I did not say "Hi, my name is Jenn, and I am calling to see if you will be sending any reporters over to the Schlamurai Swow Shord," or something very similar.  I did not hear the jumble of words and lose the ability to speak while I laughed to myself.  And the reporter who had taken my call did not fall silent for a solid five seconds, and then crack up laughing so hard I suspect he had to lean on something for support just to keep from falling over, and gasp out "Ma'am, I am sorry.  Could you please repeat what you just asked me?  And then tell me what you meant to ask me?"  It did not strike me as so funny that for the rest of the weekend, all I needed was a little reminder and I would laugh until my entire BODY was bright red.  No, not me.  Because I never mix bits and pieces of words together to form various other words.

I also did not consume "schlockett" or blow "Blubblows" as a young child.

I did not consider the idea that I was truly losing my mind as I stood on the 12th floor of the convention center, noticing the floor pulsating and moving beneath my feet and hearing the sounds of loons drifting down the highway.  And I was not relieved when I realized everyone could feel the moving floor, nor was a relieved when I realized that the PA system was responsible for the loon sounds.   All day and all night.  Every day.  And every night.

I did not find it disproportionately funny to be working at a SWORD SHOW, where there really were sharp, shiny, big Samurai swords everywhere, while in the lobby, a large group was meeting to celebrate the beauty of organ donation and get more people to commit to it.  Because asking someone to donate organs while surrounded by signs announcing the presence of hundreds, maybe thousands, of swords and people of the sort that actually enjoy collecting these swords, is not ironic.  Or funny.

I did not know yesterday that I really was starting to feel crummy and I did not wake up this morning with a fever and tonsils swollen so much that they are squished together and glands so sore and swollen that I can't turn my head.  And doing so, and cancelling all plans for the day in order to stay wrapped in a blanket and not move, did not make me wonder what nurses think when you call and cancel a bone scan because you feel too crummy to come in and get tested to see if the bone in your leg is infected.

Lastly, I am not struggling to find things to share for Not Me Monday, because I haven't gotten out of the habit and I also have not had more stress than laughter recently.

*By did not I actually mean they really did.  Just to clarify.  There are probably witnesses willing to testify that all these things that did not happen, actually did happen. 

Unrelated.

So, this is unrelated to stuff I usually post about.

I made a choice months ago, that if a particular opportunity fell through... I was all done fighting for it. 

It fell through.

It isn't God's will or plan.  It isn't best.  It isn't something that time will fix.

And it isn't something that can be ignored for a while and then readdressed.

This was the last chance.

And now it's gone. 

I am numb, partly.  And torn to shreds, partly.

So if you would be willing to pray for me... that would be good.  Part of me says "No, don't give up."  But part of me says "Enough is enough.  No more money, no more pain, no more broken hearts."

And the second part is louder than the first.

So if you see me red eyed, don't be shocked.  I've got a good reason to cry, a good reason to be angry.  Don't try to fix it with words.  Just let it go.

It's About Honor

The thing that's in me tonight, the thing that's weighing on me (well, the thing other than tomorrow) is honor. 

You see, the BIble tells us to honor the Word of God.
Look at Matthew 7:6 with me:

Don't be flip with the sacred. Banter and silliness give no honor to God. DOn't reduce holy mysteries to slogans. In trying to be relevant, you're only being cute and inviting sacrilege.

This refers to honoring the Word of GOd. Yes, there are some very popular slogans, acronymns, and other "catch phrases" that have driven home certain points to many of us. But truthfully, if we consider what the Word of God really is... we can't be doing that. It is holy. It is without flaw. The Word of God truly is the word of God. Creator of everything, savior, omnipotent, every present, never changing, never failing GOD. Is it really showing honor to run around with our cute phrases? This verse challenged me when I read it tonight. Not because I struggle with it, but because I do exactly what it says not to do.

I invent little phrases. Make up rhymes, come up with slogans, figure out acronymns. That in itself isn't showing honor, but it gets worse. After I dishonor the WOrd with my petty little things, I try to apply those things to my life. And it never, ever works. Why not? 

Read Isaiah 55:8-11 with me:

"I don't think the way you think. The way you work isn't the way I work." God's Decree. "For as the sky soars high above earth, so the way I work surpasses the way you work, and the way I think is beyond the way you think. Just as rain and snow descend from the skies and don't go back until they've watered the earth, doing their work of making things grow and blossom, producing seed for farmers and food for the hungry, so will the words that come out of my mouth not come back empty-handed."

I read this, and I see that God's Word will not return void. Or, as it is phrased here in the Message translation, I see that it will not go back to God empty-handed.

Something that is incapable of failing deserves honor, don't you think?

Silence.

You may have noticed, if you're particularly observant, that there has been nothing aside from scheduled posts, for a while now.

I've been silent.

My whole life, I have wondered at the tradition known as "a moment of silence."  It always seemed awkward, it seemed unnatural and unhelpful.

Then one of the Better Men... No, one of the BEST Men... threw off his chains and hurts and went to heaven.  It was unexpected, to say the very least.  It was tragic.  It was heartbreaking.  I wanted so badly to talk about it here, but... for once, I understood the silence.  There are not words.  What do you say about a man who is being buried not many years after his son, not many years after his granddaughter?  Do you rejoice because Jim and Roy and Natalie are together?  Do you rejoice because he has children and grandchildren there who never took a breath on this earth, and now he can know them?  Do you rejoice because He is home and he is whole?

Yes.

And for so many... you mourn.  Not for him.  But for those who have the task of learning how to live now.  How to exist in a world where he... isn't.  For the memories that won't be made. 

My heart hurts so much, for so many...
For his mother.

For his wife Rachel.

For his children and their spouses:
Eric and Toni, and their children Ethan, Katie, Emily, and Amanda
Roger and Amber, and their sons Evan and Gunner
Karl and Iris, and their son Israel
Marilyn and Ivan, and their children Trevor, Nicole, Devin, Wyatt, and Keegan
Judith and Craig, and their sons Luke and Ryan

For Carmen, who was his son Roy's wife, and their children Austin, Angel, and Garrett

And for so, so many more.

But I confess... tonight, the person on my heart the most is his youngest daughter, Judith.  She is kind, and genuine, and has ready and quick smile, just like her daddy.  Sparkling green eyes and a passion for her God and for her children.  Gentle and humble. 

It's not that Judith is the only one hurting... it's just that she is the one most like me.  The one whose pain I can understand the best. 

This song is for her.  Because my words are all used up, and I need some time in silence.


Daddy Hung The Moon
~Jeff and Sheri Easter

We made the perfect pair
The best of friends
Daddy and me
I'd be walking on air
Every time he'd smile
And say he was proud of me
We said our prayers
He'd tuck me in then
I'd look in his eyes
I knew his love could fill an ocean
And light up an endless sky

Daddy hung the moon
Out-shined the stars
Put a song inside my heart
Daddy hung the moon
Oh I know it must be true
His smile could light the world
Of this green-eyed daddy's girl
God may have made the stars
But daddy hung the moon

His favorite words were
"I love you"
He always said
There was nothing I couldn't do
There's a world of hurt out there
Little boys and girls
Who've never known love like I do
If I had one wish
I'd wish to make it right
Oh I'd give them all a daddy
And make him just like mine

Cause daddy hung the moon
Out-shined the stars
Placed a song inside my heart
Daddy hung the moon
Oh I know it must be true
His smile could light the world
Of this green-eyed daddy's girl

God made the world
In seven days
The sun to shine and the clouds for rain
But when He made the sky
He saved one part for a little girl
Who knew in her heart

Daddy hung the moon
Out-shined the stars
Placed a song inside my heart
Daddy hung the moon
Oh I know must be true
His smile still lights my world
And I'm still my daddy's girl.
God may have made the stars
But daddy hung the moon

NICIAW - Dissociative Identity Disorder NOS, PTSD, Depression, Anxiety

This is from an individual who did not provide a name to associate with his/her information.

1. The illness I live with is: Dissociative Identity Disorder Not Otherwise Specified, Post Traumatic Stress Disorder, Depression, Anxiety

2. I was diagnosed with it in the year: 1991

3. But I had symptoms since: I was a child.

4. The biggest adjustment I’ve had to make is: Making sure I feel safe.

5. Most people assume: I have my life together.

6. The hardest part about mornings are: waking up with hope about the new day

7. My favorite medical TV show is: MASH...an old one

8. A gadget I couldn’t live without is: computer

9. The hardest part about nights are: I have terrible nightmares.

10. Each day I take __ pills & vitamins. (No comments, please) 3 plus

11. Regarding alternative treatments I: am open to them

12. If I had to choose between an invisible illness or visible I would choose: invisible

13. Regarding working and career: I struggle to get by daily. I wear a mask.

14. People would be surprised to know: I was sexually, physically and emotionally abused from a very young age into adulthood.

15. The hardest thing to accept about my new reality has been: I will be healing the rest of my life.

16. Something I never thought I could do with my illness that I did was: have a professional career

17. The commercials about my illness: I don't know.

18. Something I really miss doing since I was diagnosed is: Not sure.

19. It was really hard to have to give up: Not sure.

20. A new hobby I have taken up since my diagnosis is: Not sure.

21. If I could have one day of feeling normal again I would: I don't know what "normal" is exactly.

22. My illness has taught me: to appreciate people and have compassion for others.

23. Want to know a secret? One thing people say that gets under my skin is: Why can't you just get over it?

24. But I love it when people: show care for hurt kids

25. My favorite motto, scripture, quote that gets me through tough times is: Philippians 4:13 "I can do all things through Christ who strengthens me." Also, "I yam who I yam." -- Popeye the Sailor

26. When someone is diagnosed I’d like to tell them: The diagnosis is not the total of who you are. You are so much more than someone with an illness.

27. Something that has surprised me about living with an illness is: not sure

28. The nicest thing someone did for me when I wasn’t feeling well was: Bought me and my family a Christmas tree one year when I was in the psych hospital.

29. I’m involved with Invisible Illness Week because: I was asked.

30. The fact that you read this list makes me feel: Cared about.

NICIAW - Interstitial Cystitis

Jay writes:

1. The illness I live with is:  Interstitial Cystitis

2. I was diagnosed with it in the year: 2005

3. But I had symptoms since: 2002

4. The biggest adjustment I’ve had to make is: learning to quickly find restrooms in public places, and learning how to *politely* skip to the front of the line if it's there.

5. Most people assume: I don't know.  I think most people don't assume anything, because I think most people don't think about it.

6. The hardest part about mornings are: waking up and feeling like my bladder is truly going to explode

7. My favorite medical TV show is: My family doesn't watch TV.

8. A gadget I couldn’t live without is: My computer, but that has nothing to do with the I.C.

9. The hardest part about nights are: being really sleepy and knowing I will have to get up in just a few hours to use the bathroom.

10. Each day I take __ pills & vitamins. (No comments, please) 1 Pill, Elmiron, 3 times daily.

11. Regarding alternative treatments I: believe in whole-body health, but I'm not aware of any alternative options specifically for the interstitial cystitis.

12. If I had to choose between an invisible illness or visible I would choose: visible.  It would get me to the front of the restroom line easier.

13. Regarding working and career: aside from once having to explain to my boss that my frequent bathroom breaks were medical in origin, this hasn't impacted work or career at all.

14. People would be surprised to know: that this disease actually does hurt a lot of the time.

15. The hardest thing to accept about my new reality has been: I don't know.  Reality hasn't really changed for me with this.

16. Something I never thought I could do with my illness that I did was: I have never thought my illness would hold me back from anything.

17. The commercials about my illness: There are commercials about I.C.?  Really?

18. Something I really miss doing since I was diagnosed is: Again, it hasn't really changed my life.  Though I do miss sleeping through the night.

19. It was really hard to have to give up: caffeine.  When the doctor suggested it, I said "No way."  But now, having finally done so... it does help.

20. A new hobby I have taken up since my diagnosis is: I organise bathroom races.  Okay.  No, I don't.  I don't have a new hobby.  I am hobby-impaired.

21. If I could have one day of feeling normal again I would: Go on a really long hike.  And not pee in the bushes.  I would hold it, until I was back to "civilization."

22. My illness has taught me: that self-pity is easy to do but hard to live with.  Positivity and a good perspective are harder to maintain, but easier to live with.

23. Want to know a secret? One thing people say that gets under my skin is: Be thankful it's nothing worse, and it's just your bladder.  "Just my bladder" actually really hurts and I really do not like being a slave to its whims.

24. But I love it when people: Graciously let me to the front of the line in the ladies' room without saying "You don't look pregnant, though"

25. My favorite motto, scripture, quote that gets me through tough times is:  "This, too, shall pass."

26. When someone is diagnosed I’d like to tell them: Take your meds, stop drinking caffeine, and remember - this is not a death sentence or even a serious life-impairment sentence.

27. Something that has surprised me about living with an illness is:  How resentful it makes me some days, and how even though it's not dangerous, it has made me contemplate things like a living will, what I want for myself when I get old, and what it's like for those who are seriously impaired by chronic illness that none of us can see.
28. The nicest thing someone did for me when I wasn’t feeling well was:  My doctor said "You could take this medication - it will help."

29. I’m involved with Invisible Illness Week because: I read about it on someone's blog and realized that this could be my one chance to complain about explain what it's really like.

30. The fact that you read this list makes me feel: like this blog author actually does post submissions from other people.

NICIAW - PCOS

This is from Dawn.  She has polycystic ovarian syndrome (also known as PCOS). 

In 1992 I had a period that lasted for 17 days. My mom, being concerned, took me in for my first ever "girly" doctor appointment. After the doctor examined me and asked me a few questions, he announced to my mom that I was still a virgin.. Oh, and that my body was producing a little too much testosterone. No big deal, he said and put me on birth control pills to help regulate my cycle.

I stayed on the pills until after college, but found as I got older that the pills were causing some emotional side effects that I didn't like. I figured I'd take my chances with the random cycles. Sometimes I'd go 6 or 7 months without a period then have it for a month straight with awful cramps. Since I never know when my period might come, or how heavy it might be, I learned to always be ready. I'd mention it from time to time to various doctors, even mentioning something that I'd heard of on a tv show called polycystic ovarian syndrome, but none of them seemed concerned.

Last winter I went in to the ER with the worst cramping and heaviest flow I had ever experienced. After a day of tests to make sure I wasn't having a miscarriage, the doctor came in and said, "Well, the bleeding is probably just your period... Oh, and your diabetic." And then he left. The nurse set me up with a follow up appointment for two weeks later and sent me home. 

That evening I stood in the grocery store for an hour, trying to figure out what a diabetic eats, I ended up crying in the middle of the store and leaving with out even getting anything. At the follow up appointment the intern ran a test that finally confirmed what I had suspected, I had a metabolic disease known as PCOS.

Since then I've learned what foods work for me and how to deal with my illness through diet and exercise along with some oral meds. I now read every label before I put anything in my mouth, check my sugars several times a day and carry pads with me all the time, just in case. I am also working on losing weight ( a exponentially more difficult task for those with PCOS) in order to manage the symptoms of this disease.

Most people assume that I must eat a lot and that is why I am overweight when in reality I probably take in fewer calories than most. (About 1500 a day) But my body can't process the glucose efficiently so it stores excess as fat. Because glucose is the body's fuel, and because my size has caused some issues with apnea, I am also tired most of the time.

One thing that people say that often gets under my skin is: "Should you be eating that/You can't have that!" People might be surprised to know that diabetics can eat anything they want. If I want a cookie, I have a cookie, but it may mean cutting out that baked potato or yummy slice of bread. I have a carb "budget" and I have to choose each day how to spend it with out going over.

Now that I am married, people also ask about children, sometimes even the most innocent question can be very hurtful to someone suffering from PCOS. Because of the cysts in my ovaries, becoming pregnant is a very difficult, if not impossible task. Once pregnant, the diabetic is high risk and carefully monitored. I would love to have a family, it is a heart's desire, but there is a lot of health stuff to deal with first.

I get frustrated with the commercials on TV that make diabetes an old person's disease, its not. Or that make it look like your are on the verge of death, with proper care, diabetes is manageable. Yes it is a daily part of my life, yes I've had to make some adjustments, and yes the PCOS has made each day a little more challenging, but when I am tired, I will rest, when I am hungry, I will eat, and while I am alive, I will live! 

Thank you for taking time to read this essay. My illness may be invisible, but because you read this, I am not!

NICIAW - Adult ADHD

This is from DJ.

1. The illness I live with is: Adult ADHD

2. I was diagnosed with it in the year: 1986

3. But I had symptoms since: 1981

4. The biggest adjustment I’ve had to make is: having to take medications.  I have to consciously monitor what I am saying and how I am interacting, to avoid being obnoxious.

5. Most people assume: I'm just obnoxious, but I have no "real problems."

6. The hardest part about mornings are: waking up, of course.

7. My favorite medical TV show is: Grey's Anatomy; House

8. A gadget I couldn’t live without is: my Smartphone

9. The hardest part about nights are: winding down so I can fall asleep

10. Each day I take wellbutrin and ativan for anxiety, & occasionally vitamins. (No comments, please)

11. Regarding alternative treatments I: sought God and won, for a while.

12. If I had to choose between an invisible illness or visible I would choose: visible, because then people would understand and know what I struggle with.  They wouldn't assume everything is fine, or that I just need to suck it up and deal with it.

13. Regarding working and career:  I have to be careful how I interact with coworkers so I am not overbearing or obnoxious in opinions and decision making.  Sometimes the ADHD causes me to "zone out" and I will spend several minutes staring at my screen, doing nothing.

14. People would be surprised to know: I'm a superhero at night.  No, really, I am.  Okay.  They would really be surprised to know that I am actually a very gentle, trustworthy man.

15. The hardest thing to accept about my new reality has been: knowing that something I thought was gone for the rest of my life has come back

16. Something I never thought I could do with my illness that I did was: give up medication.

17. The commercials about my illness: are actually pretty honest.

18. Something I really miss doing since I was diagnosed is: watching TV without it becoming all-consuming, and having conversations without a driving need to control what's being said.

19. It was really hard to have to give up: caffeine

20. A new hobby I have taken up since my diagnosis is:  computer programming.

21. If I could have one day of feeling normal again I would: finish at least one of the programs I have started.

22. My illness has taught me: patience.

23. Want to know a secret? One thing people say that gets under my skin is: "It was meant to be."

24. But I love it when people: recognize accomplishments for what they are.

25. My favorite motto, scripture, quote that gets me through tough times is: "I can do all things through Christ who strengthens me.  Philippians 4:13

26. When someone is diagnosed I’d like to tell them: that they can still do everything they enjoy, and that they can still succeed and do very well at whatever they want

27. Something that has surprised me about living with an illness is: The amount of support I get from my wife.

28. The nicest thing someone did for me when I wasn’t feeling well was: a guidance counselor allowed me to drop a class when I was in high school, when the teacher was not going to allow it.

NICIAW - DID, PTSD, Depression, Diabetes, Asthma, PCOS, NCAH

G didn't fill out a survey, but did share the following:

I previously suffered from DID, PTSD, and Depression. I have no current mental diagnosis, but I will NEVER be totally "over it." My physical challenges are visual impairment, diabetes, asthma, and PCOS (but I suspect the PCOS was a misdiagnosis and I may really have NCAH-- "invisible intersex"-- but I have no way to find out because I have no job and therefore no access to medical care.)

I'm not disabled enough to receive any kind of assistance but not able enough to receive unemployment (because I left my last job due to disability.) I am scratching out a living doing the only thing I can do with the resources available to me: sell my books. I made $60 last month. The toughest thing to live with about having a disability is being POOR.

NICIAW - Dissociative Amnesia or Dissociative Disorder NOS

The name I use here is going to be "BlackFrog."

1. The illness I live with is: Dissociative Amnesia or Dissociative Disorder NOS (not otherwise specified). But, have had several diagnoses over the years.

2. I was diagnosed with it in the year: 2011

3. But I had symptoms since: at least since 1979

4. The biggest adjustment I’ve had to make is: Accepting the latest diagnosis and dealing with what caused it.

5. Most people assume: That I'm too healthy to be that - I function too well.

6. The hardest part about mornings are: Getting motivated to live and do the basic parts of living.

7. My favorite medical TV show is: I don't watch any.

8. A gadget I couldn’t live without is: Anything that plays music

9. The hardest part about nights are: Getting proper sleep

10. Each day I take _0_ pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: Am open to any that may pass my way.

12. If I had to choose between an invisible illness or visible I would choose: Invisible.

13. Regarding working and career: I am considered permanently disabled by the federal government, but am a stay-at-home mom.

14. People would be surprised to know: How well I can pretend to be okay.

15. The hardest thing to accept about my new reality has been: Is that it was caused by what my father did to me.

16. Something I never thought I could do with my illness that I did was: Survive this long.

17. The commercials about my illness: don't exist.

18. Something I really miss doing since I was diagnosed is: Being clueless as to why I am the way I am.

19. It was really hard to have to give up: the concept that my mental health problems were organic.

20. A new hobby I have taken up since my diagnosis is: N/A

21. If I could have one day of feeling normal again I would: Take my children and go do the fun, normal things families do together.

22. My illness has taught me: How much damage the brain can do to itself just to protect itself.

23. Want to know a secret? One thing people say that gets under my skin is: When they tell me that the things I can remember are wrong. They tell me because I cannot remember so much, that I twist the memories I do have into pure fiction.

24. But I love it when people: Accept me as I am.

25. My favorite motto, scripture, quote that gets me through tough times is: "A child who can count to 5, sees infinity in a dozen eggs."

26. When someone is diagnosed I’d like to tell them: Be who you are... no label changes who you are.

27. Something that has surprised me about living with an illness is: How little people believe that I'm capable of having a bad day.

28. The nicest thing someone did for me when I wasn’t feeling well was: Compose an entire music album about my struggles.

29. I’m involved with Invisible Illness Week because: I was openly invited to and maybe someone will hear us.

30. The fact that you read this list makes me feel: Like you already know... or you're willing to learn. That makes you beautiful.

NICIAW - Pulmonary Fibrosis and Bronchiectasis

This is from Smurf.

1. The illness I live with is: Pulmonary Fibrosis and bronchiectasis.

2. I was diagnosed with it in the year: 2007.

3. But I had symptoms since: some symptoms present from birth which developed into above conditions.

4. The biggest adjustment I've had to make is: Regular hospital treatments/stays.

5. Most people assume: I have a bit of a cough, but otherwise am fit and healthy.

6. The hardest part about mornings are: Breathing.

7. My favorite medical TV show is: None, avoid them.

8. A gadget I couldn't live without is: Portable nebuliser that works in the car.

9. The hardest part about nights are: Breathing

10. Each day I take 30-57 pills & vitamins.

11. Regarding alternative treatments I: Try anything.

12. If I had to choose between an invisible illness or visible I would choose: Invisible. on the rare occasions I wear oxygen nasal tubes in public I can't bare the looks of pity I get.

13. Regarding working and career: I am lucky to have an understanding employer

14. People would be surprised to know: I am scared about my condition and when I wear lipstick, its to hide that my lips are blue through low oxygen.

15. The hardest thing to accept about my new reality has been: Life expectancy and transplantation prospect.

16. Something I never thought I could do with my illness that I did was: Snorkel in the sea

17. The commercials about my illness: I don't know.

18. Something I really miss doing since I was diagnosed is: Not worrying about medication and correct dosages and times.

19. It was really hard to have to give up: The partying lifestyle

20. A new hobby I have taken up since my diagnosis is: None

21. If I could have one day of feeling normal again I would: Go scuba diving and run everywhere

22. My illness has taught me: To take each day as a new one

23. Want to know a secret? One thing people say that gets under my skin is: I thought you were a smoker coughing like that.

24. But I love it when people: Don't underestimate my capabilities when they know of my condition.

25. My favorite motto, scripture, quote that gets me through tough times is: 'Thats life'

26. When someone is diagnosed I'd like to tell them: Don't just see a death sentence

27. Something that has surprised me about living with an illness is: The amazing people I have met along the way.

28. The nicest thing someone did for me when I wasn't feeling well was: Arrange a surprise birthday party when I was in hospital- everyone on the ward got involved and had fun.

29. I'm involved with Invisible Illness Week because: the saying 'don't judge a book by its cover' came to mind when reading about it.

30. The fact that you read this list makes me feel: Heard

NICIAW - Migraines, PTSD, Depression, Alcoholism, Fibromyalgia, Sleep Apnea, Graves Disease, Hypthyroidism

This post comes from Sola
1. The illness I live with is: Migraines, PTSD, Depression, Alcoholism, Fibromyalgia, Sleep Apnea, Graves Disease, Hypothyroidism

2. I was diagnosed with it in the year: Migraines: 1994, Alcoholism PTSD and Depression: 2004, Fibromyalgia and Sleep Apnea: 2007, Graves Disease and Hypothyroidism: 2010

3. But I had symptoms since: as long as I can remember.

4. The biggest adjustment I’ve had to make is: Learning to ask for help, accepting that I can't be totally self-sufficient, and lowering my expectations for what I can do in a day.

5. Most people assume: I'm young and healthy

6. The hardest part about mornings are: Getting out of bed when I'm in pain and my body doesn't want to move

7. My favorite medical TV show is: Grey's Anatomy

8. A gadget I couldn’t live without is: Pill Sorter

9. The hardest part about nights are: Being alone with memories of my abuse and convincing myself to go to bed when that's where I was hurt.

10. Each day I take __ pills & vitamins. (No comments, please) 22-32

11. Regarding alternative treatments I: get massage, see a chiropractor and meditate. I think it's frustrating that insurance doesn't pay for the things that help me the most.

12. If I had to choose between an invisible illness or visible I would choose: Visible

13. Regarding working and career: I haven't been able to work in 18 months. I miss my job, having somewhere to go every day where I felt useful and could help people. I'm in school, but I don't know if I will ever be able to work again. I hate it when people ask me how my job is going because I feel so ashamed that I am not able to work.

14. People would be surprised to know: I dream of hiking and rafting the Grand Canyon some day, but don't know if I will ever be able to.

15. The hardest thing to accept about my new reality has been: That I'm too sick to be able to hold down a job and show up every day.

16. Something I never thought I could do with my illness that I did was: Learning to stand up for my needs with doctors. Getting over my fear of needles and talking about really intimate body functions.

17. The commercials about my illness: make it sound like I could just take a pill and make it all better. Don't exist for PTSD, migraines, Graves disease or hypothyroidism.

18. Something I really miss doing since I was diagnosed is: Yoga, kayaking, hiking, swimming on a team,

19. It was really hard to have to give up: my job

20. A new hobby I have taken up since my diagnosis is: Knitting

21. If I could have one day of feeling normal again I would: Go White Water Rafting

22. My illness has taught me: To appreciate every day and the little things. Not to take anything for granted

23. Want to know a secret? One thing people say that gets under my skin is: That people on public assistance are lazy

24. But I love it when people: Listen. Sit with me when I cry. Give me hugs. Acknowledge how much I have been through. Tell me I'm a strong survivor, brave or that they admire me.

25. My favorite motto, scripture, quote that gets me through tough times is:
"Somebody told me that the darkest hour comes right before the dawn,
And I will find my way back to myself if I could just hold on,
Hold on,
To the light.
And it's going to be all right.
I know it's going to be all right.
Cuz love is on your side.
Don't fear your life.
Cuz it's going to be all right."
  ~"Dawn" by Gina Bredlove (it's a song)

26. When someone is diagnosed I’d like to tell them: Just live in today

27. Something that has surprised me about living with an illness is: that everything I go through makes me stronger

28. The nicest thing someone did for me when I wasn’t feeling well was: When my girlfriend tells me she loves me and wants to be in my life despite the fact that I'm not always able to do fun things.

29. I’m involved with Invisible Illness Week because: I want people to stop and think that every person you meet is going through something and doing the very best they can with what they have.

30. The fact that you read this list makes me feel: Hopeful that someone will work to make more resources available to struggling people.

NICIAW - MS and/or Lyme Disease

From Liz
1. The illness I live with is: Either Lymes Disease or Multiple Sclerosis. Not sure.

2. I was diagnosed with it in the year: January 2011

3. But I had symptoms since: worst symptoms in December 2011

4. The biggest adjustment I’ve had to make is: learning what I can and can’t do

5. Most people assume: that I am perfectly healthy

6. The hardest part about mornings are: knowing I have to get up and give myself a shot, every day!

7. My favorite medical TV show is: Greys anatomy

8. A gadget I couldn’t live without is: Autoject 2 that helps with the injections so I don’t actually have to stick the needle in.

9. The hardest part about nights are: Sometimes getting to sleep

10. Each day I take _0_ pills & 1 vitamins. (No comments, please)

11. Regarding alternative treatments I: have seen a homeopathic doctor for the lymes.

12. If I had to choose between an invisible illness or visible I would choose: visible

13. Regarding working and career: been trying to figure out things that I will be able to do

14. People would be surprised to know: that I am still as active as I ever was. Besides my eyes and fatigue, it hasn’t slowed me down a whole lot

15. The hardest thing to accept about my new reality has been: the fear of what the future might be

16. Something I never thought I could do with my illness that I did was: Continue being a wildland firefighter.. but have kinda decided to move on to something less strenuous.

18. Something I really miss doing since I was diagnosed is: having the freedom to eat whatever I want because of the drugs ive been taking for the Lymes

19. It was really hard to have to give up: Sugar

21. If I could have one day of feeling normal again I would: not want it to end and make the best of it

22. My illness has taught me: To be patient and try to do the best I can and appreciate the people around me.

24. But I love it when people: are just willing to listen to my complaints

26. When someone is diagnosed I’d like to tell them: it sucks, but just take things day by day and learn how you are going to move on and live with it.

27. Something that has surprised me about living with an illness is: how quickly symptoms show up and how long it takes for them to go away.

28. The nicest thing someone did for me when I wasn’t feeling well was: Wasn’t Able to drive for a while this summer because of my eyes acting up, so My mom drove to Northern Minnesota to pick me up, and my Father in Law took me back

29. I’m involved with Invisible Illness Week because: Its not fun not feeling good, and having vision problems for months at a time and no one else can see it.

30. The fact that you read this list makes me feel: Happy to know someone cares

NICIAW - Fibromyalgia

This is from Twich.  Twich lives with Fibromyalgia.

1. The illness I live with is: Fibromyalgia

2. I was diagnosed with it in the year: 2010

3. But I had symptoms since: 1984

4. The biggest adjustment I’ve had to make is: trying to pace myself.

5. Most people assume: I'm just lazy and flaky.

6. The hardest part about mornings are: Not feeling refreshed and the pain caused by morning stiffness.

7. My favorite medical TV show is: Mystery diagnosis.

8. A gadget I couldn’t live without is: The iPod touch app that keeps track of my meds.

9. The hardest part about nights are: Trying to sleep.

10. Each day I take: 8- 12 pills & 2 vitamins. (No comments, please)

11. Regarding alternative treatments I: Use various types and believe in most alternative treatments.

12. If I had to choose between an invisible illness or visible I would choose: Visible.

13. Regarding working and career: I may have to quit, if I can keep on with my job, I've been told I need to have a "Modified work description" Meaning drastically less hours and responsibilities than I'm used to.

14. People would be surprised to know: My pain level is significant and constant, I just don't talk about it often.

15. The hardest thing to accept about my new reality has been: That it affects EVERY aspect of my life, both mental and physical.

16. Something I never thought I could do with my illness that I did was: maintain a social life.

17. The commercials about my illness: Don't really cover a fraction of what this illness is really like.

18. Something I really miss doing since I was diagnosed is: 4 hour walks with friends.

19. It was really hard to have to give up: Pushing my limits.

20. A new hobby I have taken up since my diagnosis is: It's not new, but I paint more.

21. If I could have one day of feeling normal again I would: Go got a run or long walk.

22. My illness has taught me: To slow down sometimes and take care of myself.

23. Want to know a secret? One thing people say that gets under my skin is: "But you look good!"

24. But I love it when people: say "I understand, that must be hard."

25. My favorite motto, scripture, quote that gets me through tough times is: Improvise, adapt, overcome.

26. When someone is diagnosed I’d like to tell them: Don't give up, it gets easier to live with.

27. Something that has surprised me about living with an illness is: How different it feels when you have a reason for feeling this way.

28. The nicest thing someone did for me when I wasn’t feeling well was: When my little sister drew me a get well picture

29. I’m involved with Invisible Illness Week because: It's important to spread awareness- Just because you can't physically see it, doesn't mean it's not just as debilitating.

30. The fact that you read this list makes me feel: Like I may have made a difference.

NICIAW - Anemia (Iron Deficiency)

This is from Niccy:

1. The illness I live with is: Iron Deficiency Anemia

2. I was diagnosed with it in the year: 2001

3. But I had symptoms since: 1998

4. The biggest adjustment I’ve had to make is:  Getting regular blood draws, and having to miss school, work, and life in general on days when I'm just too tired

5. Most people assume: I am just lazy and whine a lot

6. The hardest part about mornings are: Forcing myself to get out of bed when just moving is hard to do

7. My favorite medical TV show is: House

8. A gadget I couldn’t live without is: My cell phone (what does that have to do with anemia?)

9. The hardest part about nights are: being so tired I cannot stay up any longer, but not being SLEEPY yet

10. Each day I take __ pills & vitamins. (No comments, please) It depends on what my levels are currently.  Usually at least 3.

11. Regarding alternative treatments I: do modify my diet and I have tried "natural supplements" but I am skeptical.

12. If I had to choose between an invisible illness or visible I would choose: visible.  I hate being called lazy.  If people could see my illness, maybe they would be more understanding.

13. Regarding working and career:  I take more sick days than many people.  My bosses in the past have thought that because my anemia is caused by iron deficiency, I can fix that and be cured.  They don't understand that this is a chronic issue for me.

14. People would be surprised to know: inside, I feel like an energetic, fun, very athletic person - trapped in a broken body.

15. The hardest thing to accept about my new reality has been: that sometimes, I just do not have enough energy to do the things I want.

16. Something I never thought I could do with my illness that I did was: run in a 5K with my friends.

17. The commercials about my illness: are depressing and not informative.

18. Something I really miss doing since I was diagnosed is: nothing, really.  I felt sick for a few years before I was diagnosed, so that particular day didn't really change anything at all.

19. It was really hard to have to give up: there's nothing I gave up.

20. A new hobby I have taken up since my diagnosis is:  I have gotten pretty good at doing Anime-style drawings.

21. If I could have one day of feeling normal again I would: spend the whole day doing things, without thinking about taking my iron supplements and without an afternoon rest period.

22. My illness has taught me: to not take simple pleasures for granted.

23. Want to know a secret? One thing people say that gets under my skin is: "My relative/friend/acquaintance had that, and they got better just by eating more meat."  I wish it was that simple, but for some people (read, me) it's not.

24. But I love it when people:  plan things that even tired people can do, and invite me to be a part of it.

25. My favorite motto, scripture, quote that gets me through tough times is: I don't really have anything like this.

26. When someone is diagnosed I’d like to tell them: keep your appointments to monitor your blood.  Take your supplements.  And be honest with your doctors about how tired you really feel.

27. Something that has surprised me about living with an illness is: that I can't just stuff it to the back of my mind.  It seems like it's always there.

28. The nicest thing someone did for me when I wasn’t feeling well was:  my boyfriend brought me soup and a pile of magazines one night when I was too tired to go out with him.

29. I’m involved with Invisible Illness Week because:  I know there are other people with anemia who don't think it really "counts" as an illness.  But it does.  Maybe I can help them get the courage to speak up.

30. The fact that you read this list makes me feel: maybe it is okay for me to share that I just do not feel well

NICIAW - PTSD/Depression

This was submitted by Kay:

1. The illnesses I live with are: PTSD and Depression

2. I was diagnosed with it in the year: 2008

3. But I have had symptoms since: 1974

4. The biggest adjustment I’ve had to make is: realizing I have a disability

5. Most people assume: I am normal with a few quirks

6. The hardest part about mornings are: fighting with a huge amount of anxiety

7. My favorite medical TV show is: House

8. A gadget I couldn’t live without is: my coffee maker

9. The hardest part about nights are: sleeplessness and anxiety

10. Each day I take 3 pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: have done massage, reiki, acupuncture, and lots of others

12. If I had to choose between an invisible illness or visible I would choose: visible

13. Regarding working and career: it is very scary to think about it as I am often unable to cope with a regular schedule

14. People would be surprised to know: how hard I have to work to maintain a normal lifestyle

15. The hardest thing to accept about my new reality has been: how much my disability affects every single aspect of my life

16. Something I never thought I could do with my illness that I did was: travel by myself

17. The commercials about my illness: I've never seen one for PTSD

18. Something I really miss doing since I was diagnosed is: living without fear

19. It was really hard to have to give up: living without medications

20. A new hobby I have taken up since my diagnosis is: playing music

21. If I could have one day of feeling normal again I would: I have no idea. I can't imagine what that would be like.

22. My illness has taught me: that I have to take care of myself first

23. Want to know a secret? One thing people say that gets under my skin is: even the tiniest amount of stress

24. But I love it when people: are gentle with one another

25. My favorite motto, scripture, quote that gets me through tough times is: This too shall pass.

26. When someone is diagnosed I’d like to tell them: Hang in there, it can get better.

27. Something that has surprised me about living with an illness is: That others can be so unaware and so cruel sometimes

28. The nicest thing someone did for me when I wasn’t feeling well was: take care of me regardless

29. I’m involved with Invisible Illness Week because: It is so hard to live with an illness that others don't see or know about. Having to try and live a "normal" life when you are really messed up is so difficult and most people have no idea.

30. The fact that you read this list makes me feel: glad to know that you know more about it and maybe will have more compassion for others that you meet with this illness

NICIAW - Endometriosis

My name is Jenn.

The invisible, chronic illness I live with is Endometriosis, stage IV.  Endometriosis, for me, is a disease in which tissue similar to the tissue that normally lines a uterus, grows elsewhere.  In my case, that means my ovaries, my fallopian tubes, my bladder (inside and outside), my large intestine, my small intestine, all the spaces between pelvic structures, as well as my kidneys, ureters, my liver, spleen, diaphragm, and right lung.  Each time my body cycles, those abnormal growths, which cause pain and problems by simply being there, start to bleed (just like having a period).  Only they bleed heavily and intensely, and it drains me of all energy and makes me very ill.  Not to mention the pain.  The bleeding causes inflammatory responses which cause the formation of adhesions and scar tissue, which then creates more places for the endometriosis to grow, and causes pain and problems of its own.  I also get cysts within my ovaries and what's left of my tubes, that get very very large and then rupture, causing loss of blood and bodily fluids, abdominal swelling, and sheer agony.  The adhesions that formed prior to my last surgery effectively turned my abdominal cavity into a solid mass.  There were new arteries that had grown and the adhesions weren't the typical filmy bits of scar tissue, but were thick, meaty tubes of tissue.  My last surgery could not be completed in one procedure, and the second half had to be completed two months later.

I was officially diagnosed following a laporoscopy on March 23, 2007. 
But I started having symptoms when I was 13 and had my first ruptured ovarian cyst.  The ultrasound revealed that the cyst was denser than typical "luteal or hemorrhagic" cysts, and the word "endometriosis came up in conversation.  It was dismissed as I was far too young.  At the age of 18, I had my appendix removed as well as a large ovarian cyst that I was told was called a "chocolate cyst."  At the age of 21, I had to have a biopsy done on my bladder due to the endometriosis that was growing there.  And yet, no diagnosis was offered.

The biggest adjustment I’ve had to make is realizing I face life-long pain and knowing that conceiving without medical assistance is no longer possible, and that at the age of 27, I have reached the end of my ability to bear children.

Most people assume that I still have time to have children, but the endometriosis has destroyed so much of my body that I am out of time.  If we get an opportunity this year to try, it might work.  Otherwise... we are done.  I am young, but that doesn't mean I have time.  They also assume that Endometrios just means I have painful periods and probably sore ovaries and tubes.

The hardest part about mornings are not knowing if I will be able to stand up when I get out of bed.  Will the pain be so severe that I cannot stand up?  Will I throw up?  If I do, will it be vomit or blood?  What about my lung?  Am I going to cough up blood?  And the adhesions - will one tear free today, causing intense pain and bleeding, possibly even landing me in the hospital?

A gadget I couldn’t live without is my electric blanket.  Sometimes, when I'm bleeding internally, I get anemic.  And so very, very cold.  The electric blanket helps me stay warm, and keeps me from shivering (which hurts even more).

The hardest part about nights are when I am so tired but I am in so much pain that I can hardly make myself breathe, never mind fall asleep.

Each day I take hydrocodone, naproxen, and elmiron pills, and at night I need ambien and ativan to help me sleep.  I also take prenatal vitamins, fishoil, and evening of primrose oil. (No comments, please)

Regarding alternative treatments I have tried so many.  Supplements, dietary changes, visualization for pain management, faith... all of those things have come into play, and have helped... a little.  Also, I have done an experimental run of chemotherapy, which was effective in causing me to loose about 1/2 of my hair and while the disease did not progress, there was no remission.  And as soon as the regiment was over, it started growing even faster than before.

If I had to choose between an invisible illness or visible I would choose invisible.  I don't like sympathy, I don't like being the center of attention, I don't like "Aw... you look awful."  But at the same time... there are days when I feel like I am being shredded from the inside out and someone will say "You look really great" and I will think to myself "NOT.POSSIBLE.GO.AWAY."

Regarding working and career, it has destroyed my career.  Do you know people don't seem to hire you when you openly admit that there are days you can't get out of bed, unpredictably.  And you have surgery 2-3 times each year, and each time could mean up to 1 month away from work, plus if you get a period you'll be missing at least a week for that, and if you ovulate, you might get a cyst requiring up to two weeks in bed.... they say they are equal opportunity employers, but.... how can anyone expect to be hired after disclosing such information?  And I feel like it is the opposite of integrity to withhold it.

People would be surprised to know how much this disease really, really hurts.  And how discouraging it can be.  But life is still beautiful, still a gift, still something to cherish and live as fully as possible.

The hardest thing to accept about my new reality has been admitting that I really do hurt.  I really am in pain, and I really could use your help.

Something I never thought I could do with my illness that I did was... well, we're still working on this one.  I want to have a baby.  I want to wait, but I can't.  If I'm going to do it, it's got to be now.  We will see if this happens.

The commercials about my illness... there are commercials about endometriosis?  I've never seen any.

Something I really miss doing since I was diagnosed is dreaming about future babies - about finding out that we'd gotten pregnant this month.  And I miss being able to be intimate with my husband without pain.

It was really hard to have to give up the idea that our children could be conceived, carried, and birthed 100% naturally.

A new hobby I have taken up since my diagnosis is blogging, actually.

If I could have one day of feeling normal again I would spar until my legs quit working, and then lay on my stomach on the beach and trace designs into the sand.  To end the day, I'd be painlessly intimate with the person I love most.

My illness has taught me to take care of myself.  To not say "I can" when I can NOT.  To ask for help, and to not be ashamed when I need a time out.

Want to know a secret? One thing people say that gets under my skin is "If it's God's will for you to have a baby, you will... at just the right time."

But I love it when people give me a big hug and say "I remember" on December 17th, which is the day our little girl was supposed to have been born back in 2006.

My favorite motto, scripture, quote that gets me through tough times is,
   "O Lord, My God, when I in awesome wonder
    Consider all the works Thy hands have made
    I see the stars, I hear the rolling thunder
    I see Thy pow'r throughout the universe displayed...

    Then sings my soul, my Savior God to Thee
    How great Thou art, how great Thou art!"

When someone is diagnosed I’d like to tell them, it's a tough road.  But not a hopeless one.  Look for the beauty in your life... because it is still there.  And now, it can mean even more than it ever did.

Something that has surprised me about living with an illness is how easy it is to get depressed and self-centered because of it.

The nicest thing someone did for me when I wasn’t feeling well was tell me to lay back down and rest.

I’m involved with Invisible Illness Week because I support others who have "invisible illnesses."  I know many people who silently suffer, and I want to give them a chance here to be heard.

The fact that you read this list makes me hope maybe it touched something in you that will help either you or someone you love.