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."
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