I never thought it would be like this!

I have spent over 30 years being a professional
caretaker as a registered nurse. Imagine my surprise when by default I became my mother’s caretaker.

This new role is taking me through a storm, tossing, turning, plunged under, disoriented, frustrated, angry, lonely and the list goes on. You’d think with my background of nursing this would be a ” no brainer”, however, this is not the case. In professional nursing you develop a helping, nourishing and caring relationship that by necessity, you develop a type of detachment just to survive emotionally and psychologically.

What I have found thus far in “care taking” that I have been working my way unknowingly through drastic change, mourning of my future, and the loss of self. Let me tell you, this makes you mad! The thing is, your torn between being “true to yourself” vs. “doing the right and noble thing”.

I just started reading this book, “The unexpected journey of caring” by Donna Thomson and Zachary White. Just in the first few pages I see my sorry self. Nobody seeks or prepares to be a caregiver with the exception of healthcare professionals, but what I am referring to here is on an intimate and personal level which makes professional caring a barrier. Within the private walls of caregiving, there are conversations and discussion that are very emotional that point to my own fears and guilt, as well as my failures. Let me give you an example: when I brought my mother into my husband’s and my home, I was confident that “I had this”! Well, it soon became apparent that this “caregiving” would require more investment than simply providing nursing care. My mother would keep saying, “I never thought I would end up like this” and ” I just need some care”. My mom’s interpretation of “care” was totally different to what I was thinking, my many years of nursing was a barrier because I was thinking that as long as I was providing excellent nursing care, she would feel “cared for”. Well, I was missing the mark, because what she meant by “care” was the humanistic and intimate part of “caring”. She was looking for physical closeness, hugs, time spent reminiscing by going through the many scrapbooks she had dedicated her life to.

In these scrapbooks, are her loves, her times that she lived through, her childhood, her values, her treasured friends amongst news items and history notes. When we do sit down and do this for the 20th time, you see her tired opaque eyes light up and a new energy is exuded from her deeply fatigued 94 year old body. These are times that “caregiving” are a treasure and you both feel good and move closer to intimacy.

I wish I could be more of what my mom visualizes, as I still have a strong desire to learn new things, I’m still not free of the need and desire to excel and learn new skills, new knowledge or work to achieve a new level of me. I find it difficult to harness all my energies toward “caregiving”. Being newly retired, I never thought this is what my retirement would look like. I pictured travel, learning new hobbies, getting more practice with my photography, having a new freedom. Instead, I am forced to be strong, resilient, the very opposite of selfish which are very difficult when you are in the throws of exhaustion and indecision. I feel caged like when you see a Bengal tiger crammed into a iron cage, trying to get out, thrashing at people going by, to hope for some attention and release from this cage.

Another challenge in this process of becoming a “caregiver” is that what is good and working well one day, does not work well the next. This causes much frustration and confusion. It is like dealing with a child again except this one is your mother and she has a whole life of living and experiences that a child does not. In the book I am reading as noted above there is a sentence that really hit home for me, “We anticipate and talk about all kinds of relationships – romantic, friendship, parent-child, spousal -but caregiving seems to come to us unexpectedly, leaving us perpetually off balance.” It is uncomfortable and restrictive, how I battle against this.

I wonder if this will “break” me as I know myself and my place in this world. I wonder as well, is this the noble thing to do? Who is it noble for? What will it cost me in terms of health, joy, or future dreams. You can’t really dream about the future because every day can be different and more demanding. Getting away is a process these days, between Covid, limited long term beds for respite care, having to pay out of pocket for more and more services or needs. These strains become part of everyday living, it’s stressful and so tiring. There are many days my only get away is a walk, even though my feet hurt and I am tired: instead of walking I would just as well lay down and have a nap. It looks like this is not for me, I need to be there for my mom for when I put myself in her tired and frail body, I just want to cry, this is not what either of us expected.

2019 Reflections

Reflecting on 2019: this has been a year of great reckoning, reflection, self-assessment and coming to terms with the limitations of my CKD (chronic kidney disease). I sit here looking back on a fantastic career in nursing: my mind is always curious and wanting to learn and disseminate the information I have studied. My whole life has been in the service of others, my passion, my drive and my existence has always been in the betterment of others by helping them understand what was going on with them. Since being dependant on dialysis for managing my health, I have come to realize that as much as my mind tells me I am not limited, my body laughs hysterically! It is a huge mental battle to come to terms with the ending of a career that has served me so well and has been such a huge part of my life! How do I just shut that off? Being a professional registered nurse means we are responsible for our practice and the efficacy of that practice. We are called to assess ourselves constantly and develop a life long learning habit, which I have! Sadly and with some grieving, I know I need to put my passionate career on the shelf and try to re-invent myself.

This is a self-portrait I took as a start to our new photography challenges for 2020. Photography is another passion of mine. Perhaps I can use my time to really progress into this field. There is much to learn and perfect. The trouble is that I have passion for life, period! I find it difficult to narrow my efforts, interests and passion into one thing. Hence, my involvement with various research initiatives with the U of A or Can-Solve as well as acting as a facilitator with the U of A. The nursing part of me comes out! I want to learn more and have a voice that speaks to both the nursing care and the patient experience.

Freedom 55: I guess I’m there whether I planned for it or not; so now I have to embrace it and make the best of it. How do I use my knowledge and experience for the last 30 plus years of both nursing and that of patient experiences for the betterment of others? Perhaps I should go in a totally different direction: take up an instrument? another language? or perhaps build on my writing and creativity?. I look at all of these as potentials to fill my time and mind in my new found “freedom”. I would enjoy any and all of them. Choices, choices. I guess I should be grateful that I have these choices available! I have seen many in my place that are not so fortunate with their health and their cognitive abilities. Here lies the struggle to keep those blessings; balancing my lifestyle, my passions, my dialysis and medications to ensure optimal outcomes that are acceptable to me. I have high standards and this has caused me great bargaining and justifications in my own life and my management. Where other’s strive to achieve “freedom 55” I have arrived here without planning or as something to look forward to. It is like being thrust into the deep water and seeing if you’re going to sink or swim. I always chose to swim. So, here is to 2020, a year of new interests, passions & pursuits. To the re-inventing of myself. Cheers!!

Loss of Control

Hello, my name is Loretta Lee and I have taken the tour! I am not just a CKD patient; I am a human being with various roles to play in life like mother, grandmother, wife, sister, daughter, Registered Nurse, comforter and caregiver.  I would like to focus on being treated as a human being during my “tour” of the healthcare system. I would like you to know what impact your small actions, words and even non-verbal’s have on me. Expectations, I believe hold a great part in the tensions or misunderstandings in healthcare. We all come to the table with preconceived ideas of what our care is going to look like, how we will be treated and attended to. As a patient, I never feel so vulnerable until I enter the acute care arena.  Let me share my experience:

My lived experience encompasses many years of CKD which included a preemptive renal transplant that lasted for 20 years, followed by starting peritoneal dialysis (PD), troubleshooting the first catheter, just to go back for surgery to remove the PD catheter, insert a new one as well as place a central venous catheter (CVC) for hemodialysis (HD), My biggest fear had arrived despite me trying absolutely everything I could with my nursing knowledge although limited knowledge of PD I had lost control. My health was in the hands of the healthcare team.

 You see, I had to have plasmapheresis after my transplant, and it was a terrible experience. Not only was the placement of CVC painful, but the course of plasmapheresis did not go smoothly: I experienced adverse events with each hook up which proceeded to get worse with each treatment, leaving me to abandon it altogether. I was told that this would be a “walk in the park”, well they didn’t tell me the park was New York’s Central Park at 3 am walking around with a cool million.

So, getting back to starting hemodialysis while my new PD catheter healed, sent me into a flurry of emotions. As you may imagine, I was fearful, anxious, and felt like my life was no longer in my control: I was basically forced to do this in order to keep living. I never wanted HD, however, I knew that this had to be done and that it would only be for 2-3 weeks. I could deal with that I thought. So, in I go dutifully, to have my in-center hemodialysis 3 times a week for 5 hours each time. I quickly learned the “patient culture” and proceeded to fit in.  All the while hating every moment in that chair, feeling trapped. I couldn’t even stand to stretch for fear my blood pressure would drop and the nurses would be scooping off the floor and filling in an incident report and we know that’s not on the agenda. 

I was very thankful for the kinesiologist that got me started on cycling during my HD. She was very encouraging and empathized with me, and this gave me something to look forward to and take up some of those long 5 hours trapped in that chair. Her encouragement and empathy, her sharing of her experience with similar problems was very appreciated and comforting. During these early days, there was something that caught me off guard: 

I thought it odd and somewhat frustrating that the RNs on the units would ask me how much I wanted taken off at the start of my runs; my thought was, “You’re asking me??’ I am new to this, so I really don’t have a clue although I know it is best to take off the calculated amount. I also know that some people will have significant leg cramping if too much fluid is taken off, but I also understand the repercussions if you don’t have the best dialysis you can. I wish instead of asking me, they could have explained more as to the consequences short term & long-term insufficient dialysis and the various factors that would reduce or prevent the adverse events, like exercise.  I am not sure why they asked this? Was it because they knew I was a RN, was it one of their ways to involve me in my own care? I am still not sure, but I do know if they had explained the fluid removal volumes and the consequences then I would’ve felt more confident in having an answer and having some control.

I was arriving to HD by myself after the first one, as my husband was frustrated and because my “slot” was evenings from 6-10:30 or 11 pm, my husband would be too tired, overwhelmed and stressed to get up & go to his job. So, there I was trying to be the “good patient”; pretending I had this all under control, taking it all in my stride as best I could. I was still working as a RN in three different clinics as well.  Low and behold, my third trip in I had an emotional breakdown that engulfed me in a tidal wave of various emotions. I remember getting settled and hooked up, I knew I was exhausted, my heart felt like it was sitting heavy in my lower chest. Before I knew it, I was crying uncontrollably, it was a struggle for me to speak due to the intensity of my emotions of being overwhelmed, losing control, feeling trapped in the chair. I so wanted to be on the other side and giving the care. The best part of that night was when one of the HD RNs noticed me losing it and came over. I wasn’t sure whether this was good or not, I struggled with being so very vulnerable at that moment in time. There is no privacy: I am sitting out among my fellow CKDers where they can readily see my meltdown. I couldn’t help but to keep telling myself to “pull it together”! The reaction to a meltdown is either avoidance with hopes I will get it together, or some brave soul recognizes the need and addresses it. I had an angel there that evening: one of the RNs crouched down and put her hand on my arm and simply shut out everything else going on to focus on me. Such a simple act that provided a lifeline for me in my vulnerability, my exhaustion, my fears. Her act of touch, empathy and encouragement was such a blessing and I will be forever grateful for her nursing art.

The moment I received the BEST healthcare was when there was no medicine, procedure, or testing done, but rather, the simplicity of the human touch, the connection that is worth more to me as a patient then the latest technology or the best medical care provided. Humanity, dignity, respect and the greatest of these is humanity.

My Journey into Chronic Kidney Disease aka ride of a lifetime.

Perfectionism Gone Wrong

Hi, my name is Loretta. I come from the Celts: I inherited the same stubbornness and never say die attitude. I am a strong, resilient woman, mother, wife, grandmother, sister, friend and have pride in my nursing skills and knowledge. I am a woman of faith. It is me that my friends, family and patients turn to for resources, for care, love, advice and comfort. My friends and family value my knowledge, experience and my humour. I keep things going and ease tensions. I am an initiator, collaborator, as well as a “take charge” kinda gal.

So, when I was diagnosed with CKD (chronic kidney disease) about 28 years ago, I saw this as a new challenge to control and perfect. After all, I was an RN and that is what we do!  I had also just had my first and only child whom I was still breast feeding when I got the word. I am not sure if it is because I was an RN that I received the diagnosis the way I did, but it was pretty blunt. I had been having “tingling” in my back when I went to my GP who promptly referred me to neurology which was sometime away. 

At the urging of my mom, I sought a second opinion from her GP. He was baffled at my symptoms and physical exam so he ordered a bunch of labs tests which included a simple urinalysis. Not long after, I received a phone call with the news that my protein in my urine was “off the scales”, I knew that was not good! but I still didn’t think of CKD.Well, the next thing I know I have an appointment with a nephrologist. I went to this appointment alone. There was no softening of the news, no delicacy: You have CKD and you will need dialysis or a transplant. What an intro into the world of CKD!!BAM! As an RN, this really didn’t shock me, as I knew from my studies that this was the course of action, no biggy I thought. In retrospect, I wonder how having a RN there to explain things in a more comprehensive or “caring” way would have done? A conversation that would give me some idea of what this new diagnosis was going to mean for my life.

Shortly after diagnosis I became very ilI and was admitted to hospital in Edmonton and then transferred to my home town of Ponoka. I was in hospital for 3 months. I was so ill that my RN friends thought I was going to die. I was so short of breath with the anasarca that I couldn’t finish a sentence. 

The most vivid thing for me was laying in the hospital bed at night and literally crying out to GOD. I was terrified that I was going to die! My body had betrayed me and was now so full of fluid that I couldn’t function, I couldn’t care for my 1 year old daughter, I had to stop breast feeding her which is something I never had to time to grieve. I had no shoes that would fit because my feet were so swollen and painful.I bargained with God, I told him that his plan sucked if I was dying. I guess my prayer was heard.

Still relying on my own strength, knowledge and perfectionism to manage my CKD. I watched my own numbers, measured, logged, and compartmentalized my life. 

A year later, I went to see my GP once again. I sat in his office and stated that I don’t understand why I feel the way I do? My “numbers” were all in range, so why do I feel so tired? I was frustrated. My GP leaned forward and locked his eyes with mine and in the most meaningful and caring tone he said, “Loretta, you have chronic kidney disease”. That was all l needed to make me breakdown emotionally. I cried and cried because I finally had someone recognize the impact of those words and that diagnosis and convey that!  He took the time to make me realize that the “numbers” don’t really add up to the whole. It was only then that I started to question why me??? I had always lived a healthy lifestyle, I did all the “right” things., but now realized the true impact of having a chronic disease that despite your best efforts will progress and end in dialysis or transplant or death. 

I did get to end stage renal disease and by the Grace of God, I got a pre-emptive transplant and continued to live life to its fullest. I got 20 years out of that transplant: much more than what I was told. When I got the “call” for the transplant I was shocked when I arrived to find the nephrologist tell me I’d be lucky if I got 5 years out of it and did I still want it? I thought to myself, “of course I want it!!!, what kind of a question and attitude is that? Do you realize I just dropped everything in my life to come here for this? I brought my young daughter out of her class, packed a few things and drove here on my own to receive this! 

20 years later, the graft was failing. By this time, I had a great relationship with my nephrologist and we could talk freely. She had come to know me well and she respected my knowledge both as a RN and as a patient who knows her own body. When I had questions or thoughts about what was going on physically or medically, she would listen and respond in a way that was a conversation. As my graft failed, we had more intense conversations about my medical management with the immune suppression and that of transitioning to dialysis. She allowed me time to wrap my brain around the whole transition and didn’t rush the decision to stop the immunosuppression for fear of rejection and yet another operation. 

That baby girl that I bargained for from GOD was now grown up and soon to be married! Such a joy and very emotional time in my life. My daughter’s father had died just the year before and now I was the only parent she had. I knew my kidney function was degrading and a I found myself  back at GOD’s bargaining table: God please let me make it to my daughter’s wedding and after that, I don’t care what happens to me. Graciously, this was granted. I was able to be a part of the wedding planning, and of course walking my daughter down the aisle. I dressed to the nines, I had a blast, I danced & danced, even when it was just me on the dancefloor. I was exhilarated! What a blessing that day was. 

Two weeks later, I was starting peritoneal dialysis. There was no more bargaining to be done. So, on July 3rdI started my first dialysis session with a wonderful RN who was respectful of my knowledge and comprehension as a fellow RN. I felt very grateful that my new partner in health was on my side and truly worked with me. She showed empathy and concern for the transition I was going through. 

Fortunately, I was familiar with “doing” PD as a RN, so I was able to go home and carry on with the treatments. My planned freedom on PD was soon not so free and I was advised that I needed to have the PD catheter removed, another put in & a central line for the healing time. I was so anxious and frightened to have a CVC and go on HD because after my transplant I had had to have plasmapheresis which did not pan out as planned. In addition, I was still working as a RN and was feeling so exhausted. 

My nephrology team was understanding. The healthcare team recognized my fears and anxiety with the placement of the CVC as my last experience was terrible and painful. I felt very cared for and felt that they had understood my feelings and needs. The next step was starting HD: my first time was filled with trepidation because of what I had experience with plasmapheresis. 

The machine revved up and away we went. To my great surprise and huge relief was that HD was going very well! 

However, on the third run, I had an emotional breakdown and just started to cry and cry as I sat trapped in the chair. It was the cumulation of all I had been dealing with, suppressing, perfecting, controlling. Low and behold there was a caring soul on duty, a HD RN that saw my distress and came and sat with me. She tried to reassure me, she was empathetic, she cared, and she was taking the time to just be with me as I continued to cry and was unable to articulate anything of sense. I felt defeated. I felt I had no control anymore.  That RN’s time, gestures, non-verbal’s, and the few empathetic words was a huge blessing to me that night. I don’t know how long I may have been in distress if she had not come along with her nursing art. What a long way I had come in my “journey” with this emotionally and physically exhausting disease. I will never forget how those few minutes spent with me when I was so “done” sharing in my weakness, my vulnerability, my exhaustion, and my loss & grief comforted me more than any other healthcare experience. You see it only takes a few minutes of your time, but it makes a HUGE impact on us, those that are in your hands when we are at our worst.

What I’d like you to take away from my experiences is that “healthcare” is at its pinnacle when the humanistic properties are crafted or intertwined into care in busy and demanding wards, ERs, specialized units, etc: those of stopping to empathize, SHOW caring by touch, non-verbal’s like engaging in meaningful eye contact. Meeting the patient exactly where they are at, putting yourself in that place, if only for the next 15-30mins, how would you want to be treated or valued?

Thank you.

The Toll Decisions have on us

“When we least expect it, life sets us a challenge to test our courage and willingness to change; at such a moment, there is no point in pretending that nothing has happened or in saying that we are not yet ready. The challenge will not wait. Life does not look back. A week is more than enough time for us to decide whether or not to accept our destiny.” 
― Paulo Coelho, The Devil and Miss Prym

Ah, yes! What life throws at us. My life has certainly thrown some curve balls for me to catch, play ball with or miss it entirely! Sometimes, as the quote above indicates, the challenges in life are meant to test our courage and how we decide to deal with those challenges; whether well or badly, creates in us change. We have all heard various sayings that indicate if you face the challenge, you become stronger, wiser, more resilient, all the better for it. Then there is the willingness part: if the change is one that either makes or breaks you so to speak, then sometimes the only thing carrying you into the challenge and experience are your personal values.

If you have read my other blogs then you know that I have had my fair share of “challenges”. These include, emotional, physical, spiritually, and psychologically. Being “challenged” with CKD and ultimately ESRD ( chronic kidney disease & end stage renal disease), encompasses all the other challenges. I have had to face a couple near death experiences where I spent time crying and questioning my spirituality and faith in God.

It is times when I am in a difficult situation where I or my husband or friends, etc. have no control over the situation, you realize that your life is really not yours to control. Imagine that, right when you want and need to be in control, you totally lose it and get carried along by the tidal wave you have just encountered. You are tossed up, down, under the water, then pop up, back under, etc in this personal storm of emergent physical needs, emotions and spirituality. They take a toll.

At some point in the “challenge” you come up for air, having won the “challenge” but your definitely more ragged, worn, and have discovered that you have a new normal. Patience, lower expectations, and having many questions about “what’s next?”. Ah, yes, decisions.

Making decisions that will change your life immensely take their toll. There is all the second guessing, reality checking, fighting against the inevitable, coming to terms with the “new you”. Who are you anymore? If you’re unable to do your job that you have loved and been passionate about for over 30 years?? Worse, yet, you can do it, but not as much as your body works against your thoughts, your spirit, your passion. What a battle that is: and this goes on almost every day! How tiring.

There is that song by The Byrds called Turn, Turn, Turn that exemplifies the tides of life and each one of us:

A time to build up, a time to break down.

A time to dance, a time to mourn.

A time to cast away stones & a time to gather stones together.

To everything there is a season, turn, turn, turn,

And a time for every purpose under Heaven.

Through all the seasons, turning and rising to the challenges, I have become a different person. I have learned patience, I have learned how to love my fellow humans, I have mastered forgiveness for my own sake, I have become wiser in the business of healthcare that has made me more aware of the questions to ask and where to probe. I have also come to terms with my limitations, well, maybe not totally: that battle still rages on more often then not sadly. The secret to dealing with “challenges”? Keep smiling and don’t let the waves take you under.

Release


Have you ever been so determined in your choices during life that when things get rough or tough you work harder ? You just don’t think of anything other than the life you’ve always known, loved, lived, and worked for. For me, this has been almost 54 years now.

That’s right, more then half a century down the proverbial road of life. I can certainly say that my road has been pretty hairy! Born into an average working family back in the 1960’s and brought up with the “Stiff upper lip” philosophy, there wasn’t much room for any moaning or groaning. Like my Dad would say often enough, “ shit or get off the pot”! Can’t get better encouragement then that😉.

With my “can do” attitude I set through my life journey under my control & certainly under my desires & wants. I did not have to rely on anyone, didn’t need to, because I had it ALL under control. Pursuing my chartered path to do the best always in all that I undertook; even remembering in grade 6 how I was so upset and was quite indignified when I handed in a school project on time {remember I said “Can do”?}, just to find out others had not been able to complete their projects so the teacher wouldn’t mark it! I was gobsmacked at 10 years old. Thankfully, that pattern did not continue further in my education pathway. So, I set my sights on not only getting my grade 12, but then carrying on to College and/or University. And that is just what I did! That “can do” attitude coupled, with the now well entrenched idea, that I could achieve anything if I wanted.

No matter what life through at me, I just kept on, asking no one for help or a shoulder to lean on. My life was my own, and it was MY destiny, power, determination, experience, and hard nosed ness that perpetuated and propelled me down my life road. Sure, I believed in a being greater than myself: God.

Somehow, God didn’t really factor in to my life. Sure I’d talk to him on Sundays, I’d sing songs of praise, I’d teach Sunday school, read scriptures at church, joined various church groups; even the alter guild! Never missed a Sunday growing up, because my dad was the minister for many years until he not only fell off the wagon, he jumped, rolled, he danced off that damn wagon. Before that? Dear ol’ mom was the driving force and role model when it came to living a Christian life.

TRUTH

It hasn’t been until the last year or so that my childhood mentoring became a force or a self-repeating mantra where I now feel a connection with that elusive being of higher power; God. It is true that no one needs a higher power until life through some rocks or boulders your way. I started this obstacle course when I was 26 years old. I just gave birth to my “prayers came true” baby girl who was perfect! Next? Well kidney disease of course; 27 years of this life journey. This is where life got real rocky: my health slowly went down the toilet until I needed the next step. I was blessed to get a transplant kidney before being subjected to any form of dialysis. Then, 20 years later, that blessing started to go: I prayed to God that if he would allow me to make it to not only my only daughter’s graduation(s), and then make it to her bridal shower , then the BIG day, my daughter’s wedding to her soul mate, then He could have his way with me.

You have to understand, that at this point I saw the wisdom in all the boulders and rocks that I’d managed to dodge. After all, it was God’s plan for ME that had happened. I am told that all good things come to those that pray and have faith in the Lord. I was beginning to see and feel this. When I was battling a deadly pneumonia in December, I found myself in the hospital chapel talking, singing, raging, and begging/bargaining with God. This was very personal and cathartic. I felt enourmous stress and pressure lifted. This had happened one other time in my past with the same result; that of utter peace.

Now, just these last weeks I was again tested by some new boulders as well as some fire as I had to face one of my worst fears; having a central line put in and having to start hemodialysis. It wasn’t just that, it was also having to have surgery to remove my peritoneal catheter and then put a second in. It was a long day on March 1st. The good news? With the support of friends, family, and God, I `made it through😁. Of course my human desires, fears, anxieties, and apprehensions rose far above the voice of God. With help from good friends, I was able to rise above the clatter of fear and anxiety and find myself in a calm and peaceful state going into my surgery as well as my first hemodialysis treatment.

THE RELEASE

To be able to release your negative emotions like letting go of a tug of war rope, gives such a huge blessing! Not only does your stress, anxieties, and fears fly away like a hot air balloon that’s too hot, but it leaves your soul and spirit refreshed like the juices of a fresh cut lemon; just oozing out and nourishing, crisp.

Well, if nothing else, I have learned to really appreciate the saying, “ah but for the grace of God, go I”. Even though I have lived a half century not grasping this concept, I am truly BEGINNING to understand the Christian life: what it is, what it offers, what it means for your heart, soul, spirit and most importantly, for my family and friends.


Keeping it together.

“Keep it together, for God’s sake! You can handle this!”  Yup, this was my self message for many years.  After all, I was young, relatively in shape, as I was working and pretty much your average small town mom. & wife, & RN. In fact, even now, these are still the messages my mind pushes through: my “push notifications ” if you will.  So here I sit, 27 years down this road , and only now really getting the part about letting things go while still doing the best you can.  “Settling” comes to mind; you have to settle for less and come to terms with this new reality, otherwise you are going to be fighting against yourself way too much and just causing yourself and your family /friends a fair amount of PIAness (pain in the assness).

I have mentioned before how my training as a RN has not necessarily served me well, as knowing  how the healthcare system works and how the HCPs think & work puts me at odds with my own care. I have wondered about this from time to time. I know that as someone that has lived with CKD for 27 years now, I have certainly  learned about my body, the many treatments and how I respond or don’t. Part of the barrier in receiving the kind of health care that we patients would like is that it doesn’t really jive with our present system of health: Please see the TED talk below which I discovered not too long ago, thought it had many good points.

BJ Miller: What really matters at the end of life

 

All the while we struggle with our disease(s), our personal tragedies ,  our losses/grief and their resultant human reactions (think depression, loneliness, & anxiety, loss of self-esteem, and sense of self), many of us will try as hell to be the person we have always been while others are just too overwhelmed by the disease and how to manage it to engage too much beyond that. We hate pity, we want to be part of life, as we are not dead yet. On the other side, we are aware of our lifespan being risky serving as another “motivator” to maintain the best care we can possibly manage.

Refections

Having chronic kidney disease (CKD) has been a journey of learning, coping, re-learning, having to accept less as a norm, grieving, and rebirth.

I have been living with CKD for 27 years. I have learned that you have to be your own advocate: learn all you can about the disease, treatments, protocols/algorythms by which your care is dictated, even if that doesn’t fit your life style or your hopes or your definition of quality of life. The one I seem to be continually battle for is the dosing of one of my medications to keep my hemoglobin up: Aranesp. I was recently told to hold my usual dose, which I did just to humour the HCPs(health care professionals ). This was after I had advised them that I can’t not have this as whenever the dose is decreased or held, my blood count crashes to the point of needing transfusions.  So, now I am back on my previous dosing, but have to play catchup for the next while. Why can’t HCPs just listen to the patient who generally knows their own body better then they will. After all, I’m the one living with this condition.

I must say, that having CKD has provided the opportunity to practice patience! Not being able to do as much as before, makes you rearrange your life & prioritize your actions to spread out oner days so as to not get too wiped out and then be out of commission for longer that you want. The other thing you learn with time, is what is really important in life. You don’t get caught up in the superficial things of life and you can easily skip things like going to so many “in” things which provide nothing for your life or your soul. I talk of things like “parties”: friends just doing their thing to make a bit of cash on the side, but in actuality, these things are distractions to what is really important in life . When you know your life is limited, you start to analyze your needs/wants.

Another aspect of living with CKD is the appreciation for family and friends that are active in your life. All the little things that my husband does for me: running out at night to buy some tempura shrimp because I never have much of an appetite, emptying my dialysis bags, turning on my electric blanket at night to make sure I’m warm, helping me with my never ending itchy skin: lots of rubs with aloe cream, as well as accompanying me to as many events that are important to me as he can stand :). My daughter also has been a true blessing as well: all the while she grew up, she knew nothing other than a mom that was sick a lot and in and out of hospitals. The price my family pays for my CKD is a cost that comes from the heart.

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Photo by Pixabay on Pexels.com

 

 

 

 

 

On the front lines: human frailties & brokenness

“The front lines” no doubt conjures up many different images and emotions depending on just what your “front lines” have been. In general, I believe it is a term that represents a battle, something to conquer, something that requires your best and potentially your wholeness in its entirety.  Not so long ago, I was at the “front lines” of my life while laying in an emergency (ER) department being treated for double pneumonia. I was very sick: “the sickest person in the ER” as the ER Dr said, and this was something, as they were very busy.

Now, some may think pneumonia can’t be that bad, surely in this day in age? It is actually deadly for people like who me who battle daily to stay healthy while living with CKD: chronic kidney disease or even ESRD: end stage renal disease. I have been blessed for 19 years next month to have had a transplant which has enabled me to live a productive and very enjoyable life until these last few months as my kidney function has faulted once again and I find myself back on the battle lines fighting to live even more fiercely. My immune system is suppressed as part and parcel of being kept alive with a functioning transplant. In case you don’t know, this means you are at higher risk to be severely ill from things most people can just blow off; like the flu (aka influenza), gastrointestinal infections, cancers, and yes, pneumonia. Well, I found out I had the meanest pneumonia going….and so, there I found myself on the front lines of the battlefield of life and death once more.

While in the battlefields (as I was in the ER for 3 days), I was witness to the human frailties and the brokenness of all kinds. The biggest battle in this world of life and death is the pain, the brokenness, vulnerabilities, loneliness, and family/relationship tragedies that are seen here. Most pronounced was the young females that came and went: all were under 21 years, all were there because of drugs/alcohol and an incident involving either suicide attempts/attention-seeking or being the victim of low self-esteem, anxiety, depression. One of these young ladies actually “coded” and was brought back to life just to be belligerent, combative, angry: broken. After calming down, being nursed, being treated and cared for through their respective hazes of drugs, alcohol, and trauma from the accidents or incidents that brought them to the ER, their families slowly trickled in. The heart-breaking conversations, or lack of, the looks on parent’s faces, the tears, the guilt, the lashing out in anger, the harsh words that poured out from these young ladies and the failed attempts from all that cared to reassure the young women was a very sad and heartbreaking thing to witness. The parents without fail all displayed brokenness.

broken heart

I can only imagine how I would feel if that was MY daughter there: so many emotions and thoughts that would coming pouring in. The bodily responses would be significant: that weight you feel in the gut that hits you like someone has just ripped your gut and heart out all at once in some barbaric Viking punishment, leaving you literally without breath, reeling, all sorts of pain rushing throughout your brain, your heart, your soul. “WHAT IS HAPPENING”? “HOW CAN THIS BE?” Soul-searching questioned pound through your brain, you search your heart, your soul, your memories, your last words spoken all in the vein attempt to make sense of the battlefield that you find yourself knee deep in!

Battling CKD, having the hope of living “normally” even when your kidneys are failing and having to face many little battlefields over many years or months takes a toll on your soul, your spirit, your humanness, your mind, and lastly, on your physical being. I carry the scars, both physically and mentally of having waged war many a time. Being in that ER battling for my life with pneumonia was a battle I would not want to go through again and would not wish on anyone else. I will be ever grateful for the insights, the lessons taught to my heart, my soul, and my person during those days in the ER and the subsequent days in the ward. It opened my eyes and heart to the brokenness there is in this world. I can only say that everyone of us is battling in battles every day!

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I will leave you with a song my daughter texted me after we had had a very emotional discussion, I know for some this song will resonate throughout your body and soul as it did mine.

Dear Life