The miracle of grief...

Update:  Healing physically has been horrendous.  The fluid and inflammation got worse day by day, and I woke daily feeling like I wasn't myself.  My face felt like it was someone elses, my hands and feet were not mine--kinda, and my body was so sluggish and delayed in thought and movement that I felt there were permanent deficits.  I feared sleep, because I wanted to know I would wake up...i feared the shift in potassium that would hit my heart next.  I felt alone, which is a normal feeling to have in such trauma.  Being alone helps us understand that we aren't in the end, because the Savior descended to our lowest of lows and is there to hear our silent cries.  I became afraid of the landmark date, that one week into the experience...my Satuday night shift.  PTSD hit me hard and I began to feel angry and fearful, desirous to avoid everything that would bring me back into a position of staying up all night and wearing myself thin.  But guess what?  I did it!!!  I wish I could say I got a good doctor in line this week, but that still hasn't happened.  I have done a ton of research though...and I know one thing is certain--this very real and serious condition has been a side effect of a life full of stress and strain.  I will not succumb to believing that I could have controlled it, however.  I believe that because I walked through it a week ago, God knew very well that I would have to experience it.  I believe that a priesthood blessing I received in January gave me foresight--and looking back, God had warned me very clearly that "even harder times" were coming ahead, experiences that I wouldn't be certain I would get through were around the corner.    He also told me of how He viewed me, however, in that same blessing--and that alone gives me the hope and courage to know that He has designed me to do one thing alone as I walk though this world...and if I do that, I will gain my reward; He desires that in all the grief and trauma, I allow myself to turn to Him...even if it means submitting to a plan that appears confusing and unfair, yet He doesn't ask us to be blind and naive--we are meant to study things out and come to a knowledge of His will.  This is what He desires each of us to do...and it's for the benefit of all mankind that He asks it, however.  If we can show our faith in God by submitting to His will, however unfair it seems, then we may be able to influence others to whom they should turn to in their distress and grief.

Grief is a feeling that is not only associated with death--I know this fully because of experience.  We all have to suffer grief in one degree or another, and chances are, we all must face a critical moment when we decide where our peace will be.  I've never found peace in TV, nor does anything that temporarily gives happiness bring peace enough to overcome death, loss, disappointment, and heartache.  Shopping is fun, food is delightful, and healthy distraction is good most of the time, but true and lasting peace can only come through the restoration and hope of all things which have been taken from us.

I have no doubt that no matter how hard our lives seem, or how easy someone else's life may be in their perspective (because I have heard of people humbly admitting to having been richly blessed in their earthly sojourn), we all must face at least one thing--and maybe more--to test us to our core.  I am also just as convinced that it happens for several reasons--maybe we need to find that unmovable support over and over until we trust that we are going to be cared for, maybe we need to find it once and then we are good...we can live the rest of our lives in a quiet reverence, knowing that through the road is hard but we will be okay, perhaps our minds won't let go of the impossible in order to see that even though earthly experiences deny the possibility of happiness, we can still be happy (stuff does not equate to happiness--attitude and character bring it so much faster than possession), and then maybe we are placed in trial and circumstance in order to show others what our determined course of hope is--because it doesn't waiver.

When Shane died, I had one thought come to me first, "The Lord giveth, and The Lord taketh, blessed be the name of the Lord"...and it was soon followed by my pleadings to God to give me peace, and give me a witness of my son's continued life.  My pure and lasting hope has been in listening to the many truths conveyed to me in my studies, in my thoughts, and in my dreams.  There is a connection that a mother shares with her children that I cannot deny.  I feel that my children are who I was born to ultimately hand over my life for.  It was a shock to have one of them taken so young in life--I was only 26 years old.  However, I found myself ever so determined to continue fighting for the remaining children of mine, and they sure do know that I love and live for them day by day.  The Lord is merciful enough to hear us in our deep anguish and give us knowledge, but I know as well that we must be quiet and still in order to receive it.  It was on my knees and in the still dark quiet night that I received insight.  It was in the funeral home when I listened to the directors words, while I pleaded to God to give me witnesses of my son, that I found God reaching out and showing me His Hand.  As I took time to take care of myself after my baby died, God gave me the clarity to have a mind still enough to see him and hear him in my dreams.  Taking care of myself was simple--it was allowing myself to lay in bed, or on the couch, and sleep through the grief.  It was then that I learned by experience that it is when we are the stillest that God can reach us the easiest.

I've been able to be still a few times since last Sunday--I'll admit that it is much harder to do when you are 34 verses 26...when you have 5 kids verses 3.  In the stillness, I have had dreams and thoughts come to my mind from the last several years.  Though I thought I understood them in part back then, I can say that I am beginning to understand them with more clarity now.  I have had promptings and desires come to me that have been hanging upon me for a few years now, but  I haven't been well enough to follow through with them because of circumstance and health.  I am now at a cross roads where I feel that the Lord will give me space to do them, I just need to do them...regardless of what time holds in it's fateful hand.  I am not saying in any way that I believe the promptings come because of impending death, because I have no idea why they come...but I do know that I must put my trust in the Lord to see anything out to it's end.  I will strive to do what I feel the need to do, and hopefully He will give me the peace of mind to know that listening to His will was all I needed to do--hopefully.

Being still also leaves room for us to grieve.  Grief is natural, is is not always pretty, but it is necessary.  The faster we let go of our desires, the faster we can cling to the Lord and His desires for us.  When I push my agenda too hard, I end up unhappy in the end, but when I give my will over to God, I always end up happy....always.  If I could wish one thing for everyone, it would be this; I would wish you the ability to see past the ache and fear, and I would wish you the courage to let go of trying to control any situation in the manner you believe it should go, but the faith to put all your good hard work into it while trusting God to work your life as a masterpiece for Him.

Grieve indeed, but trust that God is working a miracle in that grief, so much deeper than you can currently comprehend,

And this happened...

When I was a young girl, I grew up listening to the loud rain drops fall on the roof of my parents house.  The strong thunder storms that New Mexico was known for brought relief to me in so many ways.  I was a runner from my very early teen days.  Running in the desert required pure will and conditioned strength.  I remember sinking my feet into the soft sand and feeling like all of the energy I was using in my tired little quads and my huge muscular calves was sinking into the sand as it absorbed my force.  It never seemed to rain those large soothing drops of relief when I was running, however.  And when the trail was the steepest, the sun seemed to shine so intensely that I found myself praying for the shade of a tree, or better yet, the end of the course.

There was a difference in the types of running I engaged in.  I started off as a sprinter-- those races were hard but fun.  I found that the adrenaline within me was intense, but it dissipated with a short forceful effort on the track.  As I grew older, I began to develop a desire to tackle the things that were the hardest--the longer distances.  Now, I was trained to run fast--and through the long distances you really have no choice, you must pace yourself if you are going to finish.  It took a lot of time, but with that time, I used my energy to learn how to pace conserve energy; those techniques carried me into my adult years where I combined the fast pace with the longer distances, and I became pretty darn good--for the time that God allowed me to have the health and strength to run.  Now, I am learning, the marathon seems to be one that is counted as a win even if I walk, and even too, if I crawl.  

Those years of running taught me that even though it was hard, there would be an end to the cold winter mornings when ice froze on my eyelashes so I could complete my 13 mile run.  I also found that no matter how long the hill was, if I continued moving, I ended up on the top--and sure enough the descent always felt so good after that long laboring climb.  One of my strongest lessons learned was that the long runs were more bearable with company--someone willing to run with me through the cold, the heat, the climbs, and the unexpected injuries.  Goodness, I even once injured myself so bad that my sister took off her strong supportive shoes and had me wear them through the end of our run; you can say I was a fool for trying to wear brand new zero drop shoes for a 19 mile course.

For the past 4 years, the trail has been long, full of climbs, and hot--so very hot.

On Sunday, I came home from working a night shift as a nurse.  I was tired, but no more tired than I had been on prior Sundays after my Saturday stretch.  I had just been treated by an out of network physician on Friday evening for the respiratory infection that I had been suffering with for over a month.  The physician was shocked that I was ignored with my repeated efforts with my primary care professionals--I was very tight through my lungs on her assessment, with bronchitis that was quickly turning towards pneumonia.  I wasn't surprised based on how I was feeling, but as I left the urgent care that night, I drove me and my sister to the pharmacy to get my medications and I just broke.  Finally, after being strong all month in this fight for my health, and after hundreds of dollars in copays, I was able to say that my diligence in demanding treatment was paying off.  It is a shame my illness turned bad so quickly, but it did.  I cried in gratitude, sorrow, and even relief  that evening because my little sister who cared about me enough to urge me to go get help with her, as I had exhausted my efforts in trying to care for myself through the course of the day, was there to pull me up this hill.  Saturday came with no rest prior to my night shift, but I had done this hundreds of times before...and a night without sleep has become my norm, so I kinda just rolled with the punches and told myself..."you can sleep Sunday afternoon!"  Only, I didn't quite make it to Sunday afternoon.  Odd enough, I knew on Sunday morning that Sunday afternoon was going to be a mere hope.

When I got home from work, I felt fine.  I finished getting the children ready for church and while my husband showered, I got myself ready.  Once we were all dressed--with curls in all the girls hair, and matching bow ties on the brothers to compliment the ladies--we headed out.  I contemplated staying home, because I was pushing myself too hard, but the norm in my life is a push that is a bit too strenuous.  I hopped in the car, giggled at how hard it was to put makeup on with the summer being a very makeup free one so far, and looked at the tired eyes that were so desperate for sleep.  Within moments, we were at church.  

I walked into the  church with my little girls.  About halfway to the church doorway, I felt something in my body switch...like a light had been turned off, a circuit cut, or a resource taken.  I remember telling myself to keep walking...don't stop and look back, just keep walking and go sit down as fast as you can.  I did, and as I sat I breathed in deeply while feeling my body wax and wane with exhaustion--such that I had never before experienced.  I knew something was wrong because I had stayed up for three days straight in the past with no more than an hour nap on each day to push me through a full night shift work week while I cared for my children during the day...and I had never before felt such fatigue and inhibition.  I focused on my little Maya instead of using my energy to do anything else.  She laid her head on my lap, smiled with her big gorgeous eyes, tossed her legs in the air, revealing her panties, and I used all of my strength to slowly pull her skirt over her knees, reminding her to be a lady.  She giggled, and I closed my eyes occasionally, trying to calm the storm I could feel approaching.  I opened my eyes in time to see the sacrament bread tray approaching, held it firmly for my Maya to take some of the sacred bread, and passed it back.  Once the water tray came around, I was too weak to support that load, and I motioned for my husband to extend it a little further to reach Maya.  He was confused, but without me explaining any more than I already did through my silence, he pushed it forward another inch, and she partook of the water as well.  

The sacrament meeting was beautiful, as the youth and leaders who had been at Trek were bearing their testimonies and telling stories about the long hard journey they took, walking in place of the pioneers long ago--pulling carts, camping in the cold rain, wearing the same dirty clothes time and again, and cheering each other on as they walked in memory of what the pioneers who walked before us fought for--their freedoms, their God, their eternal lives.  A special hymn was played by one of my good friends--and it just so happens to be one of my favorite hymns.  It is called "Come Come Ye Saints".  The hymn is about the long and hard journey made by the pioneers, the angst and the fear they must have faced, but the fact that there was a place prepared for them to come to, and regardless of how hard the journey was, whether they wold die before it's end and find themselves wrapped in God's arms or see it out to that literal land prepared for their temporal existence, it would be good--it would be well.  My favorite verse to the song is this:  "And should we die, before our journey's through, happy day, all is well. We then are free from toil and sorrow too, with the just we shall dwell.  But if our lives are spared again, to see the saints, their rest obtain, Oh how we'll make this chorus swell, All is well...All is well!"  From the time that I lost my third born son like a thief in the night, and I had been singing this hymn with my boys day after day--teaching them every verse with a picture flip chart--prior to his sudden death; from that time when he was taken, this hymn naturally became an all time favorite for me.  He died before my journey was through, escaping the toil and sorrow I surely had to walk--but as the hymn says, "all is well, all is well."  When the soul stirring rendition of this was played on the piano, I looked down as tears filled my eyes and thanked God for giving me such sweet peace...because in that moment, I began to feel my life slip away, and surely in such times...those who have gone before us are there to either greet us or comfort us within a deep dark valley.  All I needed to know in that moment was that the events were known to God, because when things unfold in God's omnipotent plan, they are right and indeed, well.

I looked up at Maya with tears in my eyes and mouthed the words, "I love you" to her.  I didn't have the energy to even speak much by then, so I slowly turned to my other children, and with them having no knowledge of the storm that was rising inside of me physiologically, I told them each...by simply moving my lips, "I love you".  I couldn't get the attention of my oldest son at the time...he was sitting at the end of the pew.  My heart broke, but I knew that it would be okay...I didn't know how, but I knew that even doing all that I could, somehow God would help me through to know that it would be okay.  I continued to look at each child that looked my way and mouthed, "I love you" with a tired grin, because if they were to hear anything from me now, and this were to truly be my last few moments, I wanted that to be it--"I LOVE YOU!"  I wanted my children to know, above all, that I loved them to the very end.  

My heart began to race, I looked down at my fingers, saw that they were turning blue, found that minutes were turning into long moments of suffering while I sat, unable to express what was happening, tried to grab some cash out of my wallet to place into a tithing envelope, but sure enough, that was too hard for my tired and weary body.  I pushed with all of my might to move my hands, but they inched forward in slow motion, as though I was pushing up against an unseen force.  I grabbed, with all the energy of my soul, the bills in my wallet, but they fell from my pinch because I couldn't force hard enough for them to stay within my grasp.  I recall my husband watching my movements, but he didn't recognize the difficulty with which I was moving as anything critical; it was about this time that I stopped moving, I stopped everything but the basics--breathing and existing. My husband even asked if he should take me home, to which I whispered, "I can't be alone."  My purse went down to the floor, my hands fell to my side as though they were cement, Maya looked up at my hanging head and said, "Your eyes look so weird...they are big and black with a little bit of green around them."  Being a nurse in this predicament is rather interesting...and hard...I knew based on my blue finger tips, her assessment of my eyes, my racing heart, and the flaccid limbs hanging beside me, that the adrenaline "flight or fight" response had kicked in, and my body was fighting for something--though I couldn't say it myself, because I was too lethargic to do so. I knew my body was now shunting blood away from my extremities and only supporting my vital organs so I could fight for life.  The beauty of this all is that I didn't do any of this myself, I honestly remember allowing my body to give in to the physiologic process, as my head bobbed up and down...my head becoming far too heavy to support as my body succumbed to weakness and survival.

As the closing prayer was said, Steve looked back at me, confused by my presentation, and asked what I was doing...he asked what was wrong.  I looked at him in desperation, unable to use my voice, and tears filled my eyes as my spirit was screaming inside of a fading body "I can't go on...I can't move...I need help".  My breathing had become shallow and rapid, I managed to whisper that I couldn't breath, and within moments, my head officially gave in to the fatigue, dizziness, and weakness I was feeling as I began to collapse over in his arms.  Steve held my head slightly and told me to stay with him as he screamed for someone to get Brother Holmes, a trauma nurse in our ward.  I knew Brother Holmes very well, and when I heard Steve call for him, my heart filled with a sense of peace--I knew I would be in good hands if Henry Holmes was at my side...fighting with me.  My children were gathered around me, I recall seeing people in front of me looking on in confusion, and the common reaction was a stare of disbelief...no one knew what to do, or if it was even critical or real.  I was aware of most everything around me, though each moment felt like I was drifting further from the voices and reality I was still hearing,   My body was working so hard to maintain life--and at this time I looked and felt that I was fading rather quickly.  I felt Henry assess me once he arrived...and from my nursing knowledge, I knew exactly what he was looking for.  He touched my hands to check my capillary refill, he placed his finger tips on my wrists to palpate my radial pulses--my heart was racing, my hands according to him were cold and clammy, and I could hear his pleas of, "Stay with me Crystal, stay with me".  While Steve communicated in fear with a 9-1-1 dispatcher, Henry held my head up comfortably in his arms, adjusted my jaw in a position to make it easier to breath and coached me to slow my breathing, asked me if I knew where I was, and calmly reminded me to stay there, over and over, while encouraging me to hold on.  In those last few moments that I was able to maintain my vitals sitting up, I recall trying to let Henry know I was hearing him clearly, though all I could do was blink my eyes against the heaviness which seemed to glue them shut.  The longer my body was held in an upright position, the more I felt the world start to spin around me; I let out a few desperate moans, and as Steve and Henry both assessed my pupils--finding them fixed and dilated--and felt my hands becoming more clammy, they both agreed to lay me down. It was at this time that they would begin to realize the full effects of my predicament.  What my husband thought was a mere panic attack, and I knew within was not, was presenting itself in it's critical nature...and I was losing my connection with the world.  They encouraged me to lay down, to assist them, but to my great sorrow and fear, I was paralyzed from head to toe.  As they lowered my upper body to the right of the pew, my arms flopped to the side like a flaccid rag doll.  Again, they encouraged me to help lift my legs up, but my mind told them from deep within my body of heavy cement, that I was unable to move even a centimeter.  What started off as a frame of flesh and bones which I could move from here to there that morning had now turned into a prison that held all of my feelings, explanations, pleadings, and deep anguish of soul, silent--kept from any mortal ear.  Henry positioned me on my right side with my arms crossed over my torso--all I wanted to do was say "thank you" because my breathing became so much easier though my body was unmovable.

From behind me, I heard a little voice--a woman--ask where Justin is; Justin is my current Bishop, Bishop Sego.  I felt a tear drift from the corner of my closed eyes as I had just been pleading for someone to find my Bishop.  Uncertain of whether he came or not, I recall Henry anointing my head with oil and then Steve giving me a priesthood blessing.  I only recall hearing the words, "You will be at peace."  To the few people looking on, I was unresponsive, and I truly was unable to interact with the world.  My husband said he literally saw the life leaving my eyes...and I can say that I felt like my body was only a case in which I was trapped in, and I waited to either be released from it...or to make a turn for the better.  Though I felt myself come in and out of the situation, I was unable to tell them I was still there, hearing their words, waiting for the EMT's right along side of them, and praying I would somehow turn around and stop this gradual decline into what I felt was death approaching.

Within moments, I found that the paramedics had arrived and were struggling to get in and do an assessment on me.  I felt chaos all around me and was confused as to why the basic assessment that Henry had performed wasn't being done quickly by the first responders.  They asked me if I was awake, if I knew who and where I was.  My entire body was paralyzed in full--even my tongue dropped to the back of my throat as I laid, feeling as though I was nearing death, but knowing all would be well.  Soon enough, I was lifted, awkwardly so, onto a stretcher, and they started to wheel me out of the building.  My heart ached to see my children one last time, but my eyes were shut. and my body was merely a solid unmovable mass.  As my body was rolled through the doors, that same beautiful voice that questioned where my Bishop was, told me without doubt through her faithful tones, "Crystal, hang in there sweetie," as if she knew I would be just fine.  She, of course, knew I was unresponsive and had relayed that information on to her daughter...a very good friend of mine...and that good Friend, Cara, took my children under her wing to offer them comfort and as much normalcy as she could.  She even had her husband, Todd, and a previous near and dear Bishop of mine, Bishop Casey Ahner, give my children priesthood blessings of comfort.  Even at this moment, I have found such solace in the knowledge that my children were treated in the nurturing care I would expect a loving caregiver to offer in such a time as this...when their mother is fighting for her life.  Even now, I can see that some of the most dear people to me were there waiting for the Lord to use them as beacons of light for my family in crisis.  I am coming to know, even more so, that we are all intertwined in a complicated order for one purpose alone--to love and bring each other back to our Father in Heaven.  When I saw the faces of my old Bishop, Bishop Ahner, and my current Bishop, Bishop Sego, up on the stand together through the meeting, my heart felt a sense of peace that I cannot give myself....the Lord gave me peace through the people I have come to know and love deeply.  It is rare that President Ahner is assigned to our ward, but on this Sunday, of all, he was there.

The warm sun, upon exiting the building, gave me such comfort.  My body laid helpless, but my skin felt the warmth of the summer sun, on the longest day of the year, the summer solstice,  Even in my debilitated state, as my body felt heavier than ever, I cried within, through the voice of my spirit, "Thank you God, thank you for the warm sun shining down on me, taking the brisk cold away so suddenly."

Once inside of the ambulance, I recall feeling the dizziness come and go, I heard the monitor start to beep, and I felt the EMT's tie tourniquets around every limb, stick sharp needles into me as I screamed in agony inside...still only able to shed tears from the corners of my eyes, and hear them call out their findings, "Not able to get IV access, she is clamped down. we can't find anything."  They were fast yet panicked in their attempts to assure my life, but in dealing with their equipment, I felt the ambulance go over several bumps and my flaccid rag doll body flung over the 

gurney--and I laid there, unable to move my torso which hung limp off the side of the gurney, feeling sharp pains enter into my neck and spine.  Moments later, they saw what had happened and re-positioned me, only for the same predicament to occur as they became distracted with teaching a novice medic and troubleshooting equipment.  The second time I hung off the gurney, I was able to open my eyes again...and as I hung there, I stared at the wall of the ambulance, wondering how long I would lay there before the Lord created a heaviness in my breathing which I could no longer push against--it was already feeling as though my breathing was slowing and my muscles were inhibiting  the full expansion of my lungs.  I laid with my torso awkwardly flung off for a long while and allowed the tears to fall endlessly--it was all I could do to show them that I was there, feeling and experiencing it all. In those tears of helplessness, I prayed, "Lord help me fight...help me fight so I can raise my babies.  They need me Lord, give me time to raise them to Thee.  I couldn't tell Connor I love him, please let me live for them.  Father, tell Sara, tell her what's happening, let her know."  (Sara is my twin sister who lives in PA.  She had been up all night on Saturday into Sunday as I worked my shift--she had been texting me and checking in occasionally.  I later came to find that she had been receiving warnings, she was given glimpses of the tragedy about to come.  She had even come across reading material that mimicked what I was experiencing, and it wasn't until she heard my story that she realized how the Lord had led her to understand my circumstances even prior to their fateful presentation.)  I hung from the gurney--staring straight ahead, between the space that occupied a seemingly void gap between the paramedics and me.  I could see more though, and I could feel that if the Lord desired, He would allow me to see, in full, that the space which appears void of material to our naked eye, is indeed full of beauty that we simply cannot behold quite yet. The fine matter I saw was similar to a prior experience, but in broad day light, I felt the material was more royal and golden than I had ever known or seen prior.  I peacefully called out in prayer, "Are you there?  Baby Shane...are you really there?"  The element I was staring upon faded into the nothingness we call air, and as the EMT's pulled me back up on to the gurney, they saw my eyes open, exclaimed, "Hey, there you are!" but added to the driver that my pupils were fixed and dilated.  To my great pleasure, they continued striving to talk to me--and I give them all the credit for being so quick to find a method of communication that worked for us; one EMT, the one who said they were gonna have to get a little close and personal as they placed the electrodes on my chest for monitoring, started right into telling me to blink once for a yes and twice for a no.  I honestly forgot how many time a yes was verses a no, and found myself confused...with the only way I could use my inner voice...and confusing them. (Note to self: explain the communication method over and over when you are trying to speak with someone who cannot speak!!!)  Within moments, I was being wheeled in the hospital..and once again, I felt a haziness that kept me from seeing my surroundings, but I heard voices speak about my presentation.

After what felt like an eternity, the medical professionals finally rolled the gurney I was on into another room, transferred me onto a bed, and then walked out.  I laid there, wondering how this could be happening.  I was paralyzed, unable to move an inch of my body except for my eyelids, and I was alone in a room as Steve demanded doctors come in and assess me--help me.  I stared at the ceiling and wondered why I was here, wondered why I was being kept alive to be ignored, wondering how an empty room could determine why I was paralyzed.  The tears came out of the corner of my eyes faster than before, and for the first time in this experience, I felt like I was being treated unethically.  I had just spent several hours, paralyzed, feeling the adrenaline shunt blood and keep my vital organs stable, and now, I was alone, afraid, and asking God why I was being ignored.  I had  been ignored for years regarding my decline in health with monthly doctors visits, and now...as I was fighting to live...I was alone and feeling more isolated from the true help I felt I was deserving of.

As I laid there, it appeared that none of the health care workers knew I was even able to hear and understand everything that was happening all around me...but I did.  I saw their faces skeptically look at me, and I felt them look at my vitals on the screen which were relatively stable--showing signs of an adrenaline response, but stable. They visually scanned my body--without touching an inch of it, and walked out of the room.  While Steve saw my tongue plastered to the back of my throat, he brought it to their attention, got the suction yonker out, and began to suction the secretions out of my airway that I was unable to swallow, told the healthcare team about it, and they quickly looked, but that was about it.  It was about this time that I began to feel like I was being treated like a psych patient.  I felt as though I was ignored to the extreme of being someone who was faking the impossible process of being paralyzed.  Steve explained to them that I have had a number of health problems over the years, and that all the doctors had ignored me, and this too felt the same way...and he demanded to know why they too were ignoring me.   My neck was hyper-extended, my tongue was killing the ease of breathing (yes the jaw thrust is truly life saving, in case any of my fellow healthcare providers want to know), and the secretions from my respiratory infection drizzled down my throat while I laid in shock.

From about 10 am to 1pm, I maintained a full paralysis that was confusing in nature to the doctors.  They drew blood, but from their own mouths, they expected it to come back normal.  My little sister and brother in law entered the room as the confusion regarding my presentation continued.  Santana was able to look at me and see that nothing was fake, I was indeed suffering.  Tears rolled down her face as she immediately came to the bedside and kissed my forehead.  Gabe, my brother in law, looked on with confusion as well and tried to use his energy and resources to calm the unsettled soul of my husband who was furious with the healthcare staff.  Deep inside. I wanted to give it all up and just call it quits--the stress of knowing what was happening and not being able to use my voice to explain the predicament was excruciating.  The doctors and Steve talked together--and I laid there wishing they would turn toward me instead of having their backs towards the only thing I could validate their thoughts and feelings with, my eyes.  At one point, the well versed and knowledgeable doc said "neurological", and I blinked as hard and vigorously as I could--they saw it, but even with my validation, they left.

While they stood in the hall with my husband, I could hear the staff workers tell him that sometimes the mind believes there is such a threat, when there really isn't, and it causes the body to react in a certain way.  They had basically, in that moment, given me cause to feel that my instinct of their thoughts was right--to them, I was "psyching" out.

It felt like hours, but in honesty it was maybe another full hour of paralysis, and then I started to feel the efforts I was making to move my fingers and toes pay off.  I wiggled my  jaw from the position is was locked in, stretched out my aching hands, and little by little, I felt a weak control come back to me.  From the distal portion of my body, the fingers and toes, on up, I was able to weakly coordinate a sloth-like motion.  I spoke for the first time and told whoever would hear me that I was paralyzed...that I was still very weak and couldn't yet move my head or neck, but I was truly paralyzed.  An intern asked me to move my head as much as I could, the attending asked me to blink my eyes as fast as I could, and in those moments, I felt their judgments fall on me.  When you work in healthcare and there is no solid evidence of a physiological issue, you can sense the skepticism in the room, and my room was full of it.  Their "interesting" turned into them leaving the room and removing any concern in finding the primary cause.  My mom was there by this time, and I was told by the student, "The mind and body are very hard to study.  We know they play out together and there is truly a way in which they are connected, but there just isn't enough study to determine why the mind and body react like they do."  I had told them very clearly that I was paralyzed, and even though I felt an apathy course through my body because of their unbelief, I remained firm in my knowledge that something was wrong, and I needed help.  I even told them that I needed fluids, and to get some started, because of how weak I was feeling.

After a few bags of normal saline, they allowed me to attempt to get up and walk.  Standing was painful, and moving felt as though I was pushing a solid wall in order to advance each limb and overcome the space that was between me and the bathroom.  I told them of my concerns, of the lethargy and weakness I was feeling.  I even told them about how I needed to take better care of myself, to which I was validated there as well, and reminded by Chris, my nurse, to place myself first...above children and above my husband...because if I didn't, I would not be able to care for the family that needs me.  Though he was among the skeptical health care team, I confided in him to have him understand that I felt very much like I was not taken seriously and that this was more than what was being assumed by everyone...I could feel it was more.  I decided, however, to keep quiet and process things with my sisters, Mom, and husband.  I am so grateful I had family run to me in my hour of need--I am so grateful they listened to me and my instinct that something was wrong instead of assuming it was nothing.

Two hours later, lab work came back.  My husband stood outside of the room talking to the health care workers, and I could hear that something was off, but I couldn't discern anything else.  I felt sorrow flow through me as I laid there, fully capable of hearing them out,  and I had the mere right to know what my values were as the patient, but I was not granted the respect of receiving it from them.  Instead, my husband came in with concern all over his face.  I asked him what was wrong with my labs, and he said that my potassium was a critical low--2.4 I believe--and my CK (creatine kinase) was a critical high, 600.  My nursing mind said, "ah-ha!" while my soul cried tears of relief.  It sounds odd to admit that I was relieved to hear that something was wrong--but it was true.  I felt like I could present the experience and tell them that I was not a psych patient, that as I had been ignored for nearly 4 years and told I was depressed, I could finally say, "I know myself best, and something is and has been wrong".  I was already feeling traumatized by their ignorance when I first came in; it is ironic that The Lord placed me in a position to be given the support I needed to feel validated, and even as I felt like I was dying, I was still having to fight for someone to see that I was right, and something was wrong.  I have a very strong will, and when I am told "you're fine" I tend to allow my kindness to give people a free ride into neglecting and abusing my gut instincts...but I never stop fighting to be heard.  My NP would tell you "she's diligent", maybe even annoyingly so, but goodness, I have never been so grateful to hear my body tell me that there's more to the picture, and to trust those feelings that I had been experiencing for years.  Self doubt is deadly--I am grateful I can discern truth and fight for it.

The team immediately replaced my potassium, and within an hour I felt the dizzy lethargic feeling that was about to take my head and body into paralysis again, start to dissipate.  They monitored me, gave me more fluids, drew more labs, and gathered a team of providers--all the way from neurology to primary care--and had me visit with them through the afternoon, explaining my experience and history of health problems.  They didn't run anymore diagnostic studies, to which I am still frustrated, but they at least listened to me. I tried to gather information from the ER docs, but they seemed confused as to why this even happened.   I honestly felt that I knew enough about potassium and cell death to understand the lab values, but I wasn't aware of the details which could lead to such a life threatening event, especially since I hadn't experienced anything with dramatic fluid losses.

Potassium is a critical electrolyte within the human body.  My body has never depleted potassium critically, but I had been feeling signs of a muscular dystrophy in my extremities over the last month.  I recall talking to my twin sister and husband about it and letting them know that it was extremely painful and frustrating, especially because I have always been so strong and athletic--it was 3.5 years ago that I started losing strength and endurance while in the middle of marathon training because my body felt like it was no longer capable of carrying it's small mass on my strong legs.  Potassium is critical for the proper function of muscle--and especially critical to keep the heart alive and free from arrhythmia or cardiac death.  Based on my symptoms, something triggered a shift in the potassium within my body.  I hadn't wasted it in abnormal ways, nor had I felt the onset gradually--somehow the potassium was in my body but it shifted from being free and accessible in the blood to being trapped within the cells.  Because potassium is used to contract muscles, I was left like a rag doll.  The shift must have been greater than a drop to 2.4 initially...to experience a full body paralysis, the drop must have been significant and dangerous, but the adrenaline response kicked in as my body sensed that there was a life threatening event happening and my body naturally fought to correct the shift.  (Is the adrenaline response making sense now?) The safe end for a low potassium in most people is 3.5.  I feel incredibly grateful for my body that fought so hard to keep me from cardiac death, because everything tells me that it should have happened and that I am incredibly blessed to be here today--well, it could also tell me that I am indeed a very stubborn soul...and I will tick until you pull the last plug on me.

Unfortunately, the doctors, having made a mistake in their assessment and assumptions, didn't come back to me and talk things through in detail, they honestly ordered medications and labs while they left interns to come in and gain insight, critical thinking skills, and knowledge with my case.  While it frustrated me, I found myself grateful to have the professional base that I have to motivate me to take this seriously and find a solution now, more than ever.  I love science, medicine, and the human body--it is ever so intriguing to me; even though my status as a patient tells me I should be treated like I know nothing, my heart as a nurse digs deep into the territories no one else has wanted to walk with me, and I am finding probable answers to the chaos and decline.

The elevated CK is a laboratory finding when people have strokes, heart attacks and seizures or muscular disorders, like dystrophy.  Because I went into a full paralysis for 4 hours, my muscles actually were damaged...causing a breakdown in protein (because that's what muscle is) and an elevation in the protein waste--the CK.

Recovering has been torture--the toxins that are flushing out of me cause an incredible amount of swelling, sluggishness, and pain.  I have had a lag in my movements and thinking that I haven't been able to fully recover from as well.  I still feel like there is a force holding me back when I move, and more than ever, the connection of thought to verbal expression is frustrating and hazy.  I feel like this stretch of my marathon is a crawl.  My head is in significant pain for most of the hours out of each day, and  I feel very tired in body and spirit, but I also feel an incredible degree of gratitude for my continued life.  While my knowledge base is giving me insight to the direction I must go with my doctors, I am still feeling very alone in the fight to find solutions to better living.  Honestly, so long as there is fight within me, I will stand firm; to have come this far, to have gained solid evidence that my intuition is correct, and to have been guided directly to a more intense level of care is enough for me to say that God is assisting all the while and giving me the comfort of knowing that He indeed is willing and capable of helping me in the fight to reveal truth.  In the end, truth, light, and knowledge will always overcome their opposition.

In the last week, I have had a few souls reach out to me out of genuine love and concern.  For those who have, I am grateful beyond measure.  The immediate actions of a few showed the nature by which they stand to action, without hesitation, when trials befall another person.  Even while I laid in bed, angry and aching, I am grateful for the few people who would regularly text to assure I was okay.  I am grateful for one particular sister and her initiative to take on the role I couldn't fill immediately--she became the taxi driver and partial caregiver for my kids for a few days as my husband filled the remainder of those roles and grieved through some emotions himself.  When I took my children to their swim team practices on Wednesday, I am grateful for the friend who sat beside me in silence as I isolated myself from everyone because of the grief I was feeling--I am incredibly grateful she chose not to take offense when I walked away from her without acknowledging her presence to the slightest degree.  As I walked away, she followed me and took me tight into her arms and allowed the hidden tears to come falling down from the dark places of my heart.  I am grateful that I took my children to scouts on Wednesday instead of staying home, even though I should have rested far more than I did; I am grateful for the people who came to the church that night for their children and instead of going to remote locations in the building, they sat with me.  I am grateful for the many times I heard, "Crystal, I have another joke for you..." and the feelings I had as the pieces fit into a complete picture--they were intentionally keeping me from isolating and crying.  I felt their efforts to pull me out of the anguish of despair and into the light of joy that can exist even within our darkest valleys.  I am grateful for the meals that were delivered to our home, and for the naps I was encouraged to take.  I am grateful even for the desire that my family had to be close and do more--though some are so far away.  Though I have felt so alone, and really--there is a degree of alone that must be felt, I am grateful for the few people who had the desire to hear me out to know what actually happened.  I am even so grateful for the handful of people who sent me a message, asking directly, "What happened? Are you okay?"  To me, it is not prying or overstepping boundaries, it feels good to know that people care.  It is very painful to feel so close to death and then to come to the thought that there were many who weren't phased at all by the possibility of you being gone, and that is a real feeling that still aches within me, I am grateful for a sweet sister who took the time to write me and tell me the feelings of her heart as she recognized the gifts and skills that I have to fight this battle, but she didn't just recognize them, she informed me of her admiration of them as I use those gifts.  To feel beautiful in those ways takes away from the literal beauty that is robbed from you when you are physically and emotionally tested and challenged to great depths.

The sand is soft, the sun is hot, and as I move my legs forwards, I feel so much resistance--literally.  I always loved running, but I have come to see that even if I am not running, as long as I am pushing forward, I am still in the game.  I am grateful, more than ever, to be alive.  The fight for answers continues.  Heaven help the team that will work with me...if I don't feel we are on the right path, you will know!  Yes, indeed I am stubborn, but just as I say with my daughters, I prefer to call myself determined,  One day, the rain will fall and quench me with it's healing gifts.  Right now, I will be grateful for the sun, however hot it may be--if I can endure the heat, I will be ever so much more honored to receive the waters once they come to relieve me of the drought I am in.  

Blessings

Some of the sweet joys of today....

1. The reading material of both me and my daughter...she didn't realize that my book was about the same "Queen" that her book is about!

2. The sweet "welcome" sign Lydia sounded out and placed on their bedroom door.  

3. A fabulous arm wrestling home teacher that brought a smile to these kids faces.  

4. A very loving Mimi who took us out to lunch, let me cry on her shoulder, and surprised the three summer birthday kids with beautiful gifts.  Connor happened to be surprised the most leading into his 12th birthday!!!

Not A Moment Too Soon...Though Ironically Late...

I sat and scrolled through the pictures on my phone tonight...grateful for one more day that I have had here.  I didn't do everything perfect today; there were tears and heartaches that I should allow place for healing, I could have had a little more cuddle time with the kids, and surely I could have eaten a bit healthier.  Yet, I'm okay with not doing it perfect, because I honestly survived--and sometimes surviving is the bravest and most noble thing we can do.  As I scrolled though the pictures I realized how much I have fallen behind with keepsaking the memories--I mean, we have had a good few months!!!  From the "National Red Nose Day" last day of school surprise that I welcomed the children with, to the completed baptism quilt (2 years late), and then on to Birthdays, swim team, cousins, and yes....even sickness, it has been a  full summer already.  My goal upon welcoming this summer was to make it one for the records.

I believe that only a month in, this summer has claimed it's name.

I just recently wrote my thoughts and frustrations out about my health and inability to get the proper care I need.  Not a moment too soon did I write it out, though ironically late it sits.

I'm not fully ready to talk openly about what happened to me this past Sunday, except for small details of my feelings related to the experience.  I will open up in a few short days here about the experience itself and explain all that it entailed, but for now, my intent is to focus on the importance of following our instinct, claiming our voice, and defending our lives.

This past weekend was much like any other weekend...and very much like any other day in my life since I graduated from nursing school in 2009.  I was a Mom for the most part...and when the day was over on Saturday...Father's Day gifts in place, chores done, and Mommy role complete...I went of to become the nurse.  I went into work Saturday night, very sleep deprived from the prior week but happy to be there.  My patient was indeed very happy to have me back, as I have been sick for an entire month now with a severe respiratory infection (that was noted in the last post).  After saying hi and doing some suctioning in her airway, I rubbed her head and she batted her eyes into a heavy sleep.  As I do when I am mothering my children, I called her by name and said I love you, goodnight.  She was so peaceful, and I was indeed in for a night of paperwork.

The night ended as the sun came up on the longest day of the year, the summer solstice.  I watched it rise and declared that it was officially my favorite day of the year from here on out.  My twin sister, through some spiritual warning and prompting had been up all night as well...talking to me through much of my shift in text.  At 4:30am, when she continued to text, I realized that the poor thing didn't sleep--it was 6:30am in Pennsylvania.  My heart actually ached for her because I know fully well how hard it is to make it to 6:30am and then have to get up and move...that's about when your body wants to crash.  I was grateful to have her to talk to, however, because with the complications of my illness and the treatments I was receiving, I needed her advice on some symptoms I had been having.  I honestly believe that a single decision  made just a few hours later could have been an important enough one to save me from additional damage that would be occurring in my body exactly 4.5 hours later.  Never dismiss a thought...each one comes for a reason.  I'll go into these details in a few days.

What I desire to express now is the critical nature of having a voice....to speak, to love, to share, to grieve, to assist, and to advocate.  The most important thing anyone can do with their voice is advocate for themselves and their children.  When your words fall upon deaf ears, it is painful, but when they are received by a listening soul, there is peace and hope.  This act of listening requires far more than good ears...it requires the gift of looking outwardly and assessing the person who is speaking, crying out, or quietly suffering; it requires love. Not everything is really ever as it seems; such is the tragedy of forgotten heartaches that hide behind smiling faces  and souls that are hemorrhaging yet playing their part.  

A letter in desperate plea, from a fellow health care fighter...for life...

It has been one long and hard month.
I can say that of many of the months in my life, but mostly with a smile.  This month was had with a smile, a few tears, but more than anything pure grit.

First, I will talk of my experiences:
A month ago, I was beginning with an infection--which is all too frequent for me.  It seems that, as with all mortality eventually, my body is fighting between wanting to live and resisting itself all at once.  In eight months, I have spent 6 of them fighting respiratory infections.  There is only one treatment that is literally starting to save my life, but it runs the risk of allowing me and the doctors to lose track of the ultimate goal--my primary condition causing such rapid and strong infections...and the other systems of my body which are declining as well.  The treatment is hard on the body, but it allows me to breath once again, and for that I am incredibly grateful.

I have a strong inclination towards the why's, but I do not have all the answers, and I am still young enough looking for the doctors to mistreat me, even though my knowledge as a nurse is very strong and accurate, because "you (I) couldn't possibly be suffering some of the conditions of very sick people".  Then I smile and say, "I am very sick...and I can't get better."  I understand their stance...but they do not know me....or the me that was ever so strong and powerful in body 3 years ago.  I know that they are all kinda confused and looking for answers, and in the hand to face treatment I get, I still speak my voice while allowing them to have their opinions.  I was telling my sister I was going to raise Cain with the office on Monday after this last week...and with me, raising Cain is mentioning there is a problem, telling them I am discouraged and disappointed in the treatment, and then saying thank you so much for listening; kindness always makes me feel more at ease even if it doesn't solve my issue right away.  I will work on offering solutions this next visit.

In May, I started with a sore throat that progressed to sinus issues...the beginnings of my most recent battle.  Very rapidly through the week, the sinus congestion thickened and settled in my chest.  the fevers were constant, coughing and pain round the clock, and fatigue quickly settling in.  By week 2, I was talking the maximum doses of all the over the counter medications for mucus thinning, cough, congestion, fever, and pain along with tons of water and inflammation / immune boosting foods and oils.  The congestion in my bronchi thickened and coughing began to take the breath out of me...so I added my rescue inhaler.  By week 3, I had missed my last several weeks of work--being sick as a nurse working with a single immuno-compromised patient is a threat to their safety...so I can't be there.  I made the visit to my physicians office at the end of my 3rd week (because I do believe in fighting for 2-3 weeks to see if it is viral and fight-able) ...which was this Monday and was told the standard....you need to fight it because it's a virus, lets draw blood, and then he added something new... which was a surprise...a chest X-ray.  I was happy to get diagnostics underway but still struggling to breath.  Since my oxygen sats were up, there was no need in his eye to treat me...even though his eyes popped when he heard that all the over the counter medications including my rescue inhaler, nasal sinus washes, and alternative treatments like essential oils, were being used in max quantity every day for 3 weeks on most of them, and by now all of them.  (The boxes usually say to call after 5 days because it's just...not safe.)  So it is June...and on Monday the tests were sent out, I was sent away with the advice to continue the medications I was taking, though it is unsafe, and we will discuss options like sleeping more and nutrition if I can't heal.  Dumbfounded, I left with a thank you though my advocating self was stronger than ever through the prior conversations...

I ended up in the urgent care this Friday...suffering...and the story will follow in detail.

I was thinking this as I left and urgent care today after fighting for a month to get health care, and I should send this letter for them to which I convey my thoughts:

          "Dear Professional, I am indeed not happy that the health-care profession though I work in it, a highly honored one that should be getting a salary and respect much larger than it is in high correlation to the work we do to save lives, yet it is in great dismay due to regulated and  corrupt insurance agencies.  It has turned into an in and out zoo, that you are racked with hundreds of patients a day, probably bitterly leaving and coming.  I wish I could teach some of them proper etiquette in patience, kindness and respect, as I am indeed saddened you must deal with some bull-crap, to say it in my light potty mouth terms.  I know I may have you feeling frazzled at times, and I don't do it to be condescending, but wise and self preserving.  I can't imagine the demands at your hands as you try to keep up with it all...and I can, all at once, because I have worked to save adults and children at their all end line...in the ICU's. I have been seen running at a sprint when the code bell rings after I have just been seen hanging the third pint of blood on my dear cardiac patient who is bleeding out of every orifice while my hands tremble because his life is in my hands, after the 4th pint goes up, I hop down from a weak ladder...in my 9 month pregnant state to run to my new onset stroke patient next door, run to the phone to place a STAT order for platelets to help my heart patient stop bleeding out, do a thorough memorized assessment of my stroke patient to see the extent of her stroke so we can start or continue her one chance interventions that are indeed time sensitive for survival, then start compressions on my heart patient while calling in a team of nurses to assist in drawing blood for STAT bedside tests, push last effort drugs by the handful, send more nurses downstairs in a run to get the waiting blood and platelets, allow the doctor to take his time to rely upon a source higher than himself for the next intervention (because I've seen many do that ever so gracefully), ask for assistance in the compressions I am doing because I see my patients family waiting outside of the room in fear with tears rolling down their faces because their loved one not only looks mutilated, but he's dying, and they need to be loved through their grief.  Then, when the family says it's time to stop...I have stopped, paused for the first time and held myself in strength because they began a breaking process that they deserve to be feeling in every sense imaginable.  I allow them all to sob in my arms while shedding tears in their grief, because no matter how strong I am in saving a life, I am very much understanding of what it means to suddenly lose the closest thing to you for the period of this life time.  My heart aches with them--I was born to feel their pain.  Then, my 39 week pregnant body, at 6:45 am walks next door after a tremendous scrub down, a mind racing with thoughts of what to do to save her life, my assessment and care for her continues in silence...as she is seemingly about to lose her life.  I find, for the first time since my 4 hour long battle back and forth, that her name is the name of my 15 month old first daughter, I kneel down to assess the measurements of the devices we have already placed within her for our assessment and care of her life, and while she lays unconscious, I start to shed tears that drop to my large belly because the fight next door has ended, and I felt somewhat responsible for that ultimate end--though I fully know that God's hands bring two things in life that we usually cannot control--life and death.  But...I fight to the very end of the shift, receive hugs and empathy from a few other nurses who have walked that path, and a few statements of, "saw that coming" from other nurses are heard as they pass by; God bless their souls, they have become somewhat numbed in their coping mechanisms because they see and expect patterns of life and death.  Then, I question her in my thoughts and prayers between daytime wakings and feedings of my my sweet 15 month old daughter who is sacrificing much herself to have a mommy rest for a few hours before saving more lives the next night.   Now, when I have been in this predicament with the children in the PICU, I can tell you that it was certainly even more heart-wrenching.  Parents laying across the bodies of their children who have been taken back to God instantly, screaming for their baby, mothers sitting in blank stares at walls because they are in shock, parents praying over their children and reading stories and scriptures, fathers running in and out of the rooms to assure the other children are off to school while working their daytime jobs and then there at night to tend to a tired and weary Mom, and children whom I have done the same procedures on as with adults, but with open chests post heart surgery,  and tiny frames that health-care professionals do not naturally grow so callused in coping through grief with.

I've been where you are...yet in a patients acute death, and chronic or acute life saving measures as well, which require much critical thinking as a provider.

Chronic illness, as we know, can lead to acute illness and death--even sometimes rapidly when it is left unchecked.  For the last month, I can't catch my breath (on top of a number of symptoms that have surfaced in the last 3 years)...and while I strongly believe in finding the source of primary concern, I also believe in saving an airway to save a life first...so let's treat my symptoms and find the right path for deeper study.  I will do most of the study and will ask for you to lead me where to go because I know what I am talking about, I have been trained to save lives.  You of course will give me insight I haven't explored and we can be a team.   I know your time is very much limited, but my life is at stake here...please, take the advice you learn in med school/ nursing school/ PA school, and especially while you are working with another health-care personnel (currently me)...just go where they feel you need to go next...they know themselves the best.  You have seen them for 15 minutes now, and they live within their own skin 24 hours a day, 7 days a week...sometimes in pain and misery.  Let me tell you where I am more comfortable going to find the answers, and I will keep you in my care, as my physician, and I will kick my butt if I'm wrong after EXTENSIVE testing. (I've tested a central line and a patients sputum 3 times before I ever got a positive result, and it would have killed them if we didn't treat the possible culprit even before the result came back).  Please doc, you get the pay check, I get the health-care and peace of mind...let's not battle this out, especially when you are supposed to know more than me, which I do not doubt to a degree, though it may feel weird talking to someone who is explaining physiological processes and how they play one on another to you.  I know you know more than me in some things, but I know more than you in the very veins that hold my blood and the lungs which capture my breath day, by day, by day.  I will help you to help me....  And no, I am not depressed, as you ask me all the time, I am a fighter....a persistent fighter who does not only fight to survive, as I am now, but to live.  Please take my thoughts to heart...you will save many in the end by listening, and genuinely showing an empathetic compassion to all you work with.  We take an oath to "do no harm", so with those who present with intelligence and a gut feeling, please listen to them and keep your oath, and to those who just have a gut feeling, please keep them in the loop as often as they ask to be.  Recall that when a child says they are in pain, you believe it and treat it...even if with distraction therapy to start.  When people place their hands to their throat, you drop everything and ask "Are you choking?" and immediately intervene to save them.  When a PICU patient is running tachycardic, all avenues are assessed--circulation and electric cardiac activity, fluid balance, infection and fever, pain or anxiety...EVERYTHING...until you have resolved the issue.  I have never sent away a patient because they are too young and look too good to be sick.  Yet, I have had that told to me many times, even with solid laboratory evidence that something is threatening my vital organs...specifically my lungs, heart, and  endocrine glands...many of my life line endocrine balances have been sadly uncontrolled in the last 3 years.  Yes I have gone from MY normal body temperature of 97.4 to 95.6--in modern medicine, we call that hypothermia, and it kills people who normally stay in that beautiful life sustaining balance around 98.6 and then rapidly drop, but my drop has been gradual.  I am 34 years old...and my high grade fevers are now 99.2, and though you see it every time I am at your office, you still say it's "just low grade"...and I put my hand on my head and remind you of my norm which I chart often, but I feel that you still haven't placed me as the same person every time...perhaps because you are so busy and cannot recall, which I understand.  Please don't take my reminders as insults...I too don't recall everything about everyone...even their names!     I have no doubt that this spiral downwards has a primary root...and I will fight my remaining days to find it, even if it was for the sake of helping just one other person you will care for who may present with the same will and strength I have to be here month after month suggesting routes until you see enough decline in function to go there.  I'm not a prophet, except over what God reveals to me, about me, which are critical enough to reveal, and I know that one day the lungs that struggle week after week when I'm not treated will eventually give up their fight...the heart that once beat 43 beats per minute as a marathon runner 3 years ago will tire out at the standard 100-120 beats per minute I experience now in every moment, and the endocrine imbalances that consistently spike after the replacement hormone is given will just continue and place more stress on all of the other endocrine hormones...you will see those imbalances if you would check them as I ask, and my body will eventually present in complete imbalance, because you and I know best that homeostatic balance is a natural and beautiful process the human body fights for itself....until a culprit begins it's attack against the natural balance.  Treat me like you would your knowledgeable colleague and I will honor your kind name and send many your way.  Even if I wasn't a nurse, treat me with respect, and you will gladly receive my deepest respect in return.

As you recall, I spent three weeks gradually taking a decline in my health.  When I left on Monday with no treatment, I was discouraged but not defeated.  Oddly, every day this week got twice as bad as the last.  I called your office leaving detailed messages about the decline and begging for return calls three times...Tuesday, Thursday, and today.  I never heard from you.  I then heard you wouldn't be in until Monday and felt neglected as my detailed messages of what was causing the decline wasn't recognized. The secretions thickened to the point of being unmovable through my bronchi towards this afternoon, my breathing became more labored, I noticed retractions at my sternum last night, I used my rescue inhaler three times as often as I did the prior days, and when I searched for open urgent cares , they were closed.  You see...as soon as I decided that I had tried my hardest, I went home at 4pm and tended to the many children who ran errands with me most of the day...5 and six at most times.  I made sure they were fed, happy, hydrated, playing, and I got to work on the house that has been neglected in this course of my illness...though it killed me to do so.  I had lost my appetite today--which, in my trained mind, is a sign that the fight to breath is overcoming the desire to even sustain the normal life necessities, like nutrition.  I fought to hydrate, but lethargically moved from room to room feeling like I would just have to try again tomorrow.  Then I got a call from my sister who had to randomly take her new born to an urgent care out of my health care network for laboratory screening...and her first thought was that I should go with her because she knew of my trials this week.  I dropped all I was doing and felt the deep need to go.  We arranged care, she so graciously provided the dinner for the children, and we left.  I was pleased to be welcomed by a receptionist very saddened by my story and telling me to talk like I was to her...like a nurse.  I did, as I tried with you.  The doctor became concerned during my physical assessment because I was very tight through all of my lung fields and losing the ability to move air...while I was compensating with an increasing shallow respiratory rate, I was losing space in my chest cavity because of inflammation and thickened immovable secretions--I was losing the autonomic capacity to keep my respiratory system going.  She said she would call it acute bronchitis moving into pneumonia and placed me on very high doses of steroids and antibiotics.  Her thorough and very good listening ear heard things from me that I have said many times over with others, and the words that escaped her mouth were in tune with my thoughts....a very strong and resistant infectious process is happening and we need to find the culprit, not just the strain of the bacteria...but my body's underlying inability to heal, as my immune responses become more intense in COMBINATION with all of the other organ system problems I have discussed with you time and time again which are not normal for a 34 year old "typical" woman.  I have no doubt that the piece of paperwork my sister forgot at home, her thought to take me to the urgent care with her because she knows of my rapid decline, and the empty waiting room on my arrival was all in God's hands in the end...because as the wheezing started tonight, I would be calling 911 and fearing not only my life, but the safety of the many children I have here alone tonight...as their care provider, if I wasn't already starting a treatment regimen. For now, my airway, which was beginning to suffer expiratory wheezes on the way out of the office, has had a full dose of the prescribed medications, and hours later, I can finally feel my sinuses open, awful drainage fall endlessly, with the ability to breath through my nose.  My chest is going to be harder to clear because it has settled so bad...but I am certain it will clear in this treatment.  I am, however, left with the full cost of treatment at the facility today because it was my last option for care in my time limited journey that had started this morning.  Yet, as I have in the last several years, we will walk this path again.  I pray that measures to treat the acute life threatening conditions that were ignored this month will be taken seriously so that I don't have to miss a month of work, a month of progressive wellness, and experience decline into a state of panic for a single breath; I pray it is coupled with a serious adventure into what the primary condition is that is causing a rapid downward spiral.  I will continue to push in hopes that you will help me guide what I know best, my body.  I am young, and to you I may look healthy, but I am not the marathon runner I was three years ago, my marathons are far different these days...they are for life survival and not for increased wellness towards my already healthy state. I imagine you have witnessed one or two unexpected traumatic deaths due to the thought that one is too young, too beautiful, does too much googling, or is...a hypochondriac or depressed.  We all make mistakes, I do, and will never condemn such sad cases because I know they hurt so bad for all involved in the end.  I do, however, see the world we live in as a rapidly increasing place of free knowledge and wisdom to so many, at their fingertips--not everyone who thinks they are suffering cancers really are, but please take to heart their concerns.  Even if you can't legally run tests because of insurance regulations, offer them to pay the debt that may be accrued, or even offer a tender reply instead of, "that's not it, you would be so sick and hospitalized by now..."  I am not the patient compared to the standard, and the patient next door is not either...medicine is an evolving art that must take the intuition of the patient into mind far more often.  My favorite student practitioner said, "Where do you feel we need to start with your care? Because you know yourself best."  Can you see a stronger emphasis on psych practices merging with western healing, as many med schools are currently pushing? She was gone by my next visit, and my start ended up being insignificant once again.

To put it simply...empower your patient, give them the respect you would desire, and you will empower yourself in the end.

To the many hours you have given me, thank you...
Let's fight together now...and changes in our relationship, your practice and it's success, and my healing will start.  If my healing isn't changed, I will consider it God's will, but at least you can say you advocated for me at your best...and I will honor you still as I advocated as a partner in my care.

Your pleading and grateful patient,
Me, and those who suffer daily."