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Interesting where my thoughts take me sometime. I just returned home from a routine followup visit to my primary care physician. Just to check blood work and refill prescriptions. But every time I leave the house to go to the doctor, I experience a certain level of dread and anxiety. It’s as if I don’t want any more news, either good or bad, just want the status quo to remain the same so I can remain in my peace.
This made me wonder where all of this anxiety was coming from. I looked back a little. In 2014, I abruptly had to retire unexpectedly with mobility issues. I began home health care with physical therapy and improved. I had been dieting, to help my mobility as well as a goal in the back of my mind of losing 100 lbs so I could maybe have knee surgery. I have bone spurs in my knees that prevent me from straightening out my leg. They are always in a bent position like when I am sitting. I also need two knee replacements with the hopes of being able to walk again.
I discovered in 2015 I had a cervical tumor so began chemo and extensive radiation treatments every day for about 5-6 weeks. The results of the treatments cured me of cancer but left my immune system slightly compromised. UTI’s have become common and routine which is slightly irritating. Also, my lymphatic system, already sluggish from my lymphedema, became further compromised. Despite the fact I have lost right at 100 lbs, my thighs are so huge from my lymphedema, that for the first time since this whole journey began, the word hopeless actually surfaced in my mind.
Knee surgeons don’t relish doing knee replacements on anyone other than thin and/or fit persons. There are lymph nodes near the knees which would be further compromised by surgery. The size of my thighs might be a detriment to the surgery. The further compromise of the lymphatic system doing its work afterward is another detriment. I’m not sure even if I go in and tell a surgeon I’ve lost 100 lbs whether it would make a difference or not once they looked at my mobility issues and the size of my thighs. And since I already was unable to walk or even to stand except for transferring, what would that mean for physical therapy after surgery? Would they take my situation into consideration? Would they expect me to be able to do more than I am able? As you can tell, I struggle as well with mood swings. Eating was always my coping mechanism for stress and anxiety and that has gotten a major workout these past two years.
And then, last year, my husband was diagnosed with congestive heart failure. We spent several months coping with that shock, him wearing a defibrillator vest “just in case” and me fearing that crazy alarm going off periodically until he was able to have surgery and have a defibrillator/pace maker inserted into his chest. Now, he is doing wonderful and things have leveled off a bit.
In October of 2016, before his heart diagnosis, I began an at-home call center job. I work part-time to fill some time in my day as well as bring in a little extra money. There is always a little stress in handling a new job, learning a new skill, taking classes, dealing with the public and new coworkers, and just fitting a new routine into my life.
And so, the doctors’ visit today showed my white blood count is low and has been for the past year.She was waiting to see if my system just needed to “get back to normal” after cancer treatments, but now it has been long enough and is low enough for concern. We will be doing new “blood smear” tests to look at the individual blood cells to see if something may indicate problems with the bone marrow. It was all a little over my head, but means probably another specialist to add to my life after the blood test results come back. I just want to take a pill to improve my white blood count. I don’t want to think about having a bone marrow test done. And don’t want another doctor in my life.
And so, you may be thinking, “what are you whining about? You beat cancer. So, you have mobility issues; you are working towards a solution. Hubby is doing great. So what is your problem?” The chronic uti’s are an irritant, but nothing major. The mood swings are not constant, just once in a while. but difficult to cope with when they suddenly appear. Which causes more anxiety, which causes extra struggles with my lifelong coping mechanism of eating, which then causes struggles with the diet and controlling my eating, which then causes anxiety and frustration and depression. You get the idea.
And thus, the word that popped up into my head today was “hopeless”. It has floated around in my subconscious for many months and I kept pushing it away as useless to worry about. Can my situation actually improve? Will I be able to have surgery? Will I be able to walk again and not be so dependent on others to just leave the house or be limited on what I can do around the house? I haven’t been able to get in a tub or shower for many years. I dream of that sometimes. Will I be able to train my bladder again if I can walk again and be able to get rid of my catheter?
All simple things, each with mini goals to strive for and possible solutions. But some days, all the separate irritants or struggles and thoughts add up to a very heavy load that tries to press down on me. So, today is the day to get some of this out, to verbalize it and then relieve some of the stress of the thoughts. Just writing this helps. Thanks for listening.
I have been using home health care for 3 years now. The nurse comes once a month for a catheter change and every couple of months they do a reassessment. I loved BSA Home Health care. About a year ago, they were bought out or merged that department with a local home health care Compassion. When new people take over, there are always changes.
I was accustomed to having the same nurse come to care for me. I never know which one will show up. I used to know when they were coming for a visit, and we set up the date and time of next months visit. Now, I know sort of when they will be planning on coming, and they usually call or text me the evening before and tell me when they are coming the next day.
I still have periodic trips to the Cancer center for port flushes, and periodic doctors visit. Even though I am home bound, I do still have things to schedule into my days. Also 8 months ago, I began a home call center customer service job which I work about 6 days a week. These hours I am committed to and I arrange my schedule ahead of time.
When I know about when home health care will be making a visit, I usually schedule my day off for the week or sign up for late hours. But the situation usually manages to push all of my negative buttons every month and affects my attitude. It is quite disconcerting and aggravating. I am usually a little out of sorts for about 2 days.
Not only is it a very intimate thing to have someone do a catheter change, it is stressful having someone different each time who doesn’t know my routine or my body. I find I have to repeat my instructions/requirements each time to someone who didn’t come the last month and was not informed. Stuff like, I am handicapped, and how to get into the house because I wont be answering the door; how we have to do the change with my help because of my mobility issues and bad hip and shoulder; making sure they text me to contact me because my job keeps my landline unavailable; instructions about which supplies etc. to bring each time.
Because I knew that they should/might be coming today, I scheduled my work time to begin late afternoon as they usually come in the mornings before I am out of bed to make the change. And so, I get the text last night and she is coming at 1pm! And so, once again my routine has been totally upturned and I had to drop 3 shifts of work to accommodate her visit.
I made an online email complaint to Compassion about 3 weeks ago expressing my concerns and frustrations about the uncertainly of the way they schedule things. I have no complaint about the nurses who come. My main complaint is in the scheduling and how they seem not to take into consideration my wishes or scheduling. After the email complaint, I got a call from a woman who said she would be my “New” case manager. She set up an appointment to come to my house for a meet and greet.
She did not show up for the appointment. I called the next week to ask when the next scheduled nurse visit was going to be. The receptionist looked on the schedule and said, “They just came out last week”. I said, “No, she didn’t show up”. She said, “Oh, well let me transfer you to your case manager”. I rolled my eyes since I knew that was who had stood me up last week.
She comes on the line and I ask when the next scheduled visit would be. The conversation goes back and forth for a while while she is trying to understand exactly what I want, and somewhere in the conversation managed a “Oh, my meeting ran long and I couldn’t make it last week. I guess I should have called.” My eyebrows about hit the ceiling. Pfffftttt. She schedules another visit and comes to see me and allows me to express my frustration with scheduling, repetitive instructions etc. and replies with pat pacifying dialogue of nurse shortages, people calling in sick etc. (I already have 6 nurses in my phone with pictures so I can keep track of them.) She was very kind, seemingly understanding, and expressed that I was important to them. I could tell she was practiced at saying what she felt would pacify and soothe without really saying anything, but she was nice. And so, after that visit in which I reiterated my wish for morning catheter changes before I am out of bed, we come to this week and my buttons were all pushed to the limit once again.
I don’t want to have to hunt for a new home health care agency. I’m not sure how. It was easy when it was set up from the hospital after a visit. and was working wonderfully before the merger and the change. Change is inevitable, but it can really be a big pain in the butt.
I received a generic/informative email today from my son about a family member. It was a reminder that we all might have differing political, religious, emotional or environmental interests and beliefs but that we are still family and need to treat each other with respect.
It was a reminder to me of how to use and treat Facebook. Facebook is also like a big family. We have friends, coworkers, acquaintances and family all blended into one huge family. We share our lives, our family pictures, our outings and keep in touch with those far away. We share news and reports of interest. Some are legitimate articles or news, and some are purely for entertainment with a huge dose of tongue-in-cheek thrown in. We share memories and things that happened in the past. We share new things, and unexpected illnesses and ask for prayers and support. Amidst all of that, we sometimes get caught up in politics. That is always a topic of interest with incendiary possibilities lurking.
Within my family are people of many religious choices. Most are Christian, but some are undecided. My husband was brought up Southern Baptist and I was a Lutheran. We tried each others church and ended up not going for a time. We are both now Catholic. I embraced and became friends with some special Charismatic Nuns and the belief in the gifts of the Spirit. I pray in tongues in my private prayers.
Some of us are conservative and some are quite liberal. Some are straight and some are not. Some are married and some are not. Some are Republican and some embrace the Democratic party. Some are extreme in pro environmental issues or in recycling while some are actively seeking equality in personal choices and acceptance. But they are family and I love them all.
I have friends and coworkers of many races. My last job, I was in the minority. I was the white person. It took me many years to even notice because we were women first of all, coworkers with a common goal, and friends. I now have a new work environment. It is also varied with women and men, many races and many age groups, from the very young to the elderly.
Every where we go, in whatever we do, we find people who have different beliefs, different political beliefs, different backgrounds and different religious affiliations.
Some of my very close friends were avid lovers of Obama. We managed to work together for most of those 8 years without any contention. We were friends, coworkers, and shared work, values and respect. We kept politics out of the work arena. But because of these friendships, I try to be careful when I post things on Facebook.
I post things I see that I believe in. I also post controversial things of interest. Sometimes I believe in them and sometimes I think they are “out in left field” and just find them fascinating. I try not to post extremely damaging articles about things I know are important to some of my friends. It is more important to me to have friends than to attempt to mold the world into a mini ME or convince them that “my way is the only or best way”.
Who we are and who we become develops over our entire lifetimes and we are constantly changing. Things I thought were important when I was younger are not so now. There are things I did once that would raise eyebrows now. We learn like children. We try something to learn and to grow, and then we have to decide what is the most important to us. We have to decide what is the most beneficial way to live and what will create the least amount of drama or stress in our lives. After all, we want to work, to grow, to be creative, to give of ourselves, to share what we know, and to learn from others and enjoy life while doing it. And thus, hitting someone over the head with our personal passions or beliefs is not the way to create and live a happy life.
We all are different. We are made different. We think differently. Different things touch our souls or move us, or encourage us to want to make a difference, or to make a change or to help in some way. My passion is not yours. Each of us have different passions and the urge to improve our world in our small way. But my way is not the only way and we all can help or bring change within our own passions.
We all can be stubborn. We all can be obstinate. We all can be adamant and rigid. We all can be angry. We can be rude and we can be loving. But we can also respect and admire our family and friends and coworkers for what they have become, the accomplishments they have made, the trials gone through and the strengths they have gained along the way. We are first and foremost, people. And people want to live and to grow and to be productive and be creative and to love and be loved. During our search for all of those things, we may temporarily embrace new things to “try them out”. There will be some we keep and there will be some we discard as we continue on our journeys.
As a believer in the Triune God, personal spiritual relationship and prayer is extremely important to me, but that is also part of the journey. I believe strongly that we cannot live without a relationship with Jesus and survive. We all live in different “seasons” of our lives. Each season has its own lessons to learn and goals to accomplish and hurdles to overcome. Some are personal and some are Spiritual. When it is time to move from one season to the next, we will.
What motivates one person is not what might motivate another. But, we are still all people, who want to live and earn a living and feel useful and to find happiness. How we do that is a lifelong journey that each individual has to make. We all will make mistakes and we all will be obnoxious and we all will be offensive. But hopefully in the end, we will be kind, compassionate, and recognize we are all alike and facing problems or situations that color our behaviour. We can live with each other and love each other and respect each other and still not agree or embrace each others passions. Sometimes it is better not to speak than to start a war that will last a long time.
The ones close to us know what we feel, what we believe and whether or not we might approve of their choices. It is not always necessary to attack them to reiterate our beliefs. Just because our passions or beliefs or political leanings are different does not mean that we are stupid, or illiterate, or uninformed.
So, I am conservative. I tend to be Republican. I am a Catholic, but am also a Christian and a Charismatic. I recycle some, but not avidly. I give to others and to charities, but sometimes look out for me or family first. I can see both sides of the situation and see good in both sides, but sometimes I wear blinders. I am white. I also grew up middle class verging on poor. I can’t help that any more than others can help what color they are. That doesn’t really matter. That is just skin. It DOES mean that we were probably raised differently, maybe with different opportunities or within different belief systems or environments. I had no control over that either.
Those things are just things. They helped to develop and shape us along the way. And the people we met, and the choices we made helped to form us into who we became.
That is how we live. We might be white, or black, or oriental or brown, but we are people. We have to understand that others might not see us as we want to be seen because they have not traveled along our path. Their path was different. It taught them different lessons. They didn’t experience what I did, and it is not their fault.
But that doesn’t mean we cannot be friends and coworkers and enjoy each others company, insight, life experiences and share in failures and successes. They are part of the journey as well.
And so, I am a daughter, a mother, a wife, a sister, a grandmother, a woman, white, conservative, Catholic, and Republican. I also like chocolate, chips, mexican food, diet coke, being useful and productive and creative, and wish to be as independent as possible. I am kind, compassionate, empathetic and dependable. I am loyal. I can’t tell a lie without stammering. It is not something I ever learned to do. I read, I watch tv. I work. I spend time with my husband and daughter. I keep in touch with distant family by phone, text, messenger or Facebook. I try to be kind, but sometimes I am tactless. I try to be understanding, but sometimes I am selfish. Those are just some of the things I am. I am many things and do many things and enjoy many things. But most of all…I am just me.
When I was young, I was brought up in the Church. I have memories of my father sitting in the corner reading out of his Bible. That didn’t mean I was perfect, or knew what it meant to be a good Christian. It just means I was aware of God and Jesus and to me, that was normal.
I wasn’t taught to openly share my faith. My mother was a reserved woman and felt our spirituality, or our beliefs were extremely personal and not really to be shared. I grew up thinking my faith was a portion of who I was. It was partitioned off from my everyday life. There was my every day secular life and there was my Sunday spiritual life, but they didn’t really coincide.
I didn’t learn until much later in life that there is no such thing as a separation. What we are and what we believe is all intertwined together to make the whole. Even as adults, when others depend on us to take charge, to support them, to provide for them, we realize deep down, that without that underlying security blanket of our faith and dependence upon God the Father, the Son and The Holy Spirit, we would be helpless to accomplish much at all.
In thinking of this as I watched the streaming version of Christmas eve Mass by my Church, I remembered this statement that went around years ago: “If you were on trial for being a Christian would they have enough evidence to convict you?”
Do people tend to turn to you when they need prayer? Do people tend to avoid sharing off-color jokes with you or are you the first one to hear and the first to share? Do people apologize for bad language around you or refrain from using those words in your presence or do you have the reputation for cussing? Do R rated movies turn you off? Does the profanity in PG and PG13 movies make you uncomfortable? Do you cringe when you hear the Lords’ name used as a curse word? Or have you become accustomed to it and you no longer notice?
Remember this passage? “Romans 12: Therefore I urge you, brethren, by the mercies of God, to present your bodies a living and holy sacrifice, acceptable to God, which is your spiritual service of worship. 2 And do not be conformed to this world, but be transformed by the renewing of your mind, so that you may prove what the will of God is, that which is good and acceptable and perfect.”
That just means we are a part of this world. We live here, work here, associate with people and are able to influence them, but we are not supposed to be influenced and brought down to their level just so we can “fit in”. We are supposed to strive to live holy lives, and not compromise just because “everyone else does it”, or “that’s just the way it is done now” or “that idea is so old-fashioned”. We must strive to keep our spirits and souls separate and pure from the distractions and enticements of this world. There is much to keep up from prayer and from fostering our relationship with Christ, but in the end, that is all that will matter.
We need to be an example to others. We might be the only example of Christ they ever see. Matthew 5 13 “You are the salt of the earth; but if salt has lost its taste, how can its saltiness be restored? It is no longer good for anything, but is thrown out and trampled under foot.
14 “You are the light of the world. A city built on a hill cannot be hid. 15 No one after lighting a lamp puts it under the bushel basket, but on the lampstand, and it gives light to all in the house. 16 In the same way, let your light shine before others, so that they may see your good works and give glory to your Father in heaven.”
Let your “light” shine. Let the best part of you, the part that seeks to emulate Christ, shine so others can see God in you.
All hidden from myself,
But falling out in unexpected ways.
Uncertainty, feelings stumbling around
Trying to be heard.
Where did they come from?
What are they trying to say?
It’s a mystery with lingering emotional fallout
that sprinkles over everything like ugly confetti.
Not happy, but perplexing, annoying.
Causing an inner unexplained anxiety without a safety valve to release the overflow.
The wave carries me along and I don’t resist.
Sometimes it’s easier to lay in it and ride the current to see where it goes.
But the end is just as confusing as the beginning.
There is no explanation, no purpose, no resolution.
Just the remnants of unexplained wisps of moody voices fading away.
Vague memories of melancholy, sadness and despair
turning into transitional vaporous mists of the new day coming.
11/9/2016 Esther York
The past 2 months have been a whirlwind of emotions for all of us. My husbands new diagnosis of Congestive Heart Failure caused a lot of changes and left us with uncertainties.
He began wearing a defibrillator vest that monitors his heart 24/7. If you aren’t familiar with one, it’s what we call his ‘man bra’. Tucked into the vest are 5 different leads that monitor his heart. One under each arm, one under each breast, and a back piece consisting of two larger pieces that can administer an electric shock if the vest recognizes an irregular heart rhythm.
It is attached to a battery pack which he is tethered to and carries slung by strap over his shoulder or on a strap or clip hanging off his waist. If one of the leads is not touching his body properly and reading the info it needs, a “gong” will sound alerting him to the problem. His monitor will show him in pictures which lead is the problem so he can adjust it.
If the gong is ignored, it can escalate to a ‘siren’ sound and a voice will announce for people to stand back and don’t touch the patient. It assumes he has passed out and that there is a problem with his heart and that he is unable to respond. It will give him an electircal shock just as if he was on an ER table getting the ‘paddles’. If he can push two buttons on his monitor it will stop the siren and reset itself.
Sometimes, just stretching and the movement the garment will make as you stretch will cause the lead to move and not be positioned correctly causing the gong to sound. Sometimes when he roughly changes position from one side to the other during the night, that will cause things to shift and the gong will sound. You can’t know how exciting it is to be awakened in the night to either the gong or the siren and that stern voice! Each time it has happened, he has just reset the monitor as per instructions. He takes it in stride but it causes me no end of anxiety. Sometimes I even yell for him to respond making sure he actually CAN respond.
He was put on an extremely low sodium diet because his heart function is so low. That has caused some change in eating habits and as a result he has lost about 25 lbs. That also caused a problem with the vest fitting properly and he had to get a smaller size which was a little too tight and not very comfortable. Wearing the vest has been a major adjustment. For instance, sometimes he will forget his tether and start walking off without it and it will tumble off of where he set it to wash his hands.
After 3 months evaluation and monitoring by the vest, they will look into how to help his situation best. He may get a defibrillator/pacemaker combo implanted. We are just not sure how they are planning to address his ‘bundle block’ problem. That is when some of the electrical impulses telling the heart to work its job are not doing their job and they are not firing.
He had no warning of his problem. He works 50 hours a week as a manager and we assumed his being tired was because of the hours and the after work errands he is required to do to help me because of my limited mobility. One weekend, he could not catch his breath. He felt like he had just run a race and was breathing hard and could not catch his breath and it scared him enough to go to the ER. That is where this all began. They discovered he had some heart damage, fluid buildup in his lungs, and that his heart output was only working at about 20%. He has not had a heart attack and doctors are not sure what has caused the heart damage. He is slightly diabetic so that is a possibility, and sleep apnea might be another possibility although he has never had a sleep test done or been diagnosed with sleep apnea. It is still an unknown.
And so, it is now 2 months later and we all have had to cope with the changes. They could have labeled this disease better I think. Just receiving the news that you have ‘congestive heart failure’ sounds like there is no hope and you might die at any moment. I can’t imagine the emotional toll that diagnosis can cause. My husband is pretty closed mouthed about it all.
And now, he has used up all of his vacation time on unexpected trips to the ER. Once, when he began this journey, another time, he became severely dehydrated until he got more information telling him about how to curtail his fluids and reduce his sodium and still drink enough to not get dehydrated. And so, his employer requested a form from the heart doctor about his condition and its requirements and/or ongoing treatment expectations. It is a generic form and a lot of how it is worded does not apply to my husband or his job.
The doctor put on the form that he needed light duty and would not be able to continue to do his job without certain restrictions and that he might be needing more time off in the future. My husband is a manager of a small convenience store. He does paperwork, runs the cash register and does some stocking. The vendors unload the trucks. There is never any heavy lifting. He has continued working and hasn’t had any problems other than adjusting to wearing his new vest and monitor/battery pack.
Hubby picked up the certified copy of the form last friday after work from the post office. The wording of that report has caused him to be told he will most likely go on 26 weeks of unpaid medical leave and then can be reevaluated. That in effect, would take away our livelihood and our car and our insurance. With the possible loss of our main income abruptly and with no warning or planning, you can imagine how our weekend went.
Now, tomorrow he has an emergency appointment with the doctor so he can explain his work situation and requirements and hopefully we can turn in a new copy with no restrictions so he can keep his job. His mind immediately thinks of all of the worst case scenarios and how we will be 66, with medical challenges, no insurance and no way to pay our monthly expenses and no car. I refuse to look ahead at that but the worry hides inside and festers. Both ways are horrible and create much anxiety. Hopefully this new roller coaster ride will end as abruptly as it began and we can continue our lives with a little less stress.
I don’t like change. I never have. There is a certain amount of comfort to be had when you can pretend you have some control over how things happen in your life. And the way we do that is to have structure in our lives. It may just be something as simple as our normal daily routine. Whatever it is, it gives us a center, a resting place, a place our lives revolve around. Everything is structured around that or progresses from it and when it changes, there is uncertainty once again.
I suppose it is that feeling of uncertainty that is so unsettling. The idea of not knowing what is going to happen next, or the fact that we don’t know what tomorrow will bring is not something we like to face. The routine gives us the illusion of the path ahead with a clear-cut direction. Uncertainty is confusion and the sense that time is passing us by while we are trying to get our bearings.
We learn to trust in the routine. It helps to give us a purpose. If something happens to upset that certainty, it feels as if something important has been removed from our very being and left behind an emptiness that causes us to falter in bewilderment. What are we supposed to do now? Which direction should I go in? Is there a solution? Where should I look to find it? People say “just keep on keeping on” or “the journey begins with one step”. But which way do I turn? And how do I do that? Everything has changed. And I never liked surprises.
When I was younger, the teaching that we must “become like little children” didn’t make a lot of sense. It’s beginning to make more sense now. Our tiny illusion of control is really just that. We don’t know what tomorrow will bring. We don’t know if there will even be a tomorrow. Should we give up in despair because we can’t fight the surety that there will be uncertainty?
No, we learn to live our lives within the tiny illusion. We must live as if we will always live. We must love and play and learn and do and continue to grow and continue to become whatever it is we will become. We have to nurture that trust in God and know that we will never know all the answers and that it is okay not to know. We have to nurture that faith which gives us strength and becomes that center and that certainty. It may get shaken from time to time, but it is always still there. And that gives us that inner peace and quiet which enables us to live.
Joni Eareckson Tada is sounding an alarm about a very dangerous message in a film released this summer.
When I was younger, I was immersed in the present and assumed things would always be somewhat the same. I was taught to learn, seek goals, whether it be marriage and love, or job promotions and advancement. There were certain things that were just “the way things were” and life happened. I didn’t think much about anything further than the near future I could see.
But there are seasons to each life. I’ve passed through a few of them. I got married and had children. 46 years have passed. I am still living in that season but there have been others within. I lost friends who were too young. I lost a father. I lost a younger sister. I’ve had cancer.
In the beginning, there was a time of growing, learning what it meant to become an adult. I remember after my 2nd child musing that “I must be a woman now.” There was a time of independence. I decided to buy a car on my own, without my husbands’ help. I wanted to prove to myself that I could do something without his guidance. I was very proud of my baby doo doo yellow Toyota.
There was a time of losing my naiveté and learning about life, and work and how others live in the world. I learned how to cuss. There was a time of brokenness, of emotionalism and a time of therapy. There was a time of spiritual seeking. During that time I rediscovered and found again my love for God and met Jesus.
That time began a journey in a new direction. I felt and tasted the presence of the Holy Spirit and wanted more. I met a community of Charismatic Nuns who became mentors and friends and lifelong prayer companions. I had a season of prayerfulness which forged a habit and love and dependence upon prayer which has sustained me and strengthened me, and taught me how to live the rest of my life.
Now I am in a new season. If it has to be defined, perhaps it is a time of aging, a time of disability, a time of learning dependence of a different sort. Through it all, I have used and been sustained by the prayerfulness I learned before. I am eternally thankful for that season of learning about prayer. I couldn’t have gotten this far without it and without my faith.
And as I look ahead, I also look behind. I can see some mistakes and some times when I was more seeking than I am today. I have learned a little about living with resignation, but still grasp onto the vision of hope and a better and stronger future. Perhaps now it is time to once again seek for more.
Two years ago when I had to quit work suddenly and “became handicapped”, I had to make certain adjustments and self realizations. I could no longer be self-sufficient. I could no longer be independent. I now had to rely on others for help. I had to allow home health care into my home to give me physical therapy and ongoing monthly care.
It was a huge adjustment. I have always been a hermit. I never had close friends. My sisters were my closest friends and I didn’t need anyone else. I grew up always feeling “on the outside looking in” and that people, especially women coworkers. would always judge me on my house, my furniture, and how clean or messy it was. My house was my sanctuary from the world. It was where I could go and be safe. It was never shared with others outside of family.
Now, I was required to let strangers into my house, and they were usually women. Already apprehensive at life changes and unknown waters, I now had to trust strangers with my personal care and my personal space. Years of increasing immobility had added to my procrastination and inability to “keep the house presentable” and in perfect working order. Years of neglect and compromises were now being scrutinized by outsiders. This added a level of stress and discomfort to an already anxiety-ridden situation.
I soon learned that most of these caregivers were kind, compassionate, understanding and empathetic. I began to relax my guard somewhat. And then a few months ago, my home health care provider decided to regroup and no longer wanted to continue that service. They merged with a new company and an abrupt and sudden new change began.
I was used to a certain level of care and understanding. Now, there were unknown changes in protocol and operating procedures. I used to know when the nurse came, that she would come back the next month, on a certain day and what time. She was assigned to me personally. She knew my house. She knew my quirks. She knew my body and what I needed and how to accomplish that.
When the changeover began, I was once again apprehensive until I met them and found they were just as compassionate and eager to serve as I was accustomed to. And then, I would get phone calls the night before telling me they wanted to come by. The nurse who came the month before was new each time. I had someone new coming into my home every two weeks and never knew who it would be. Sometimes they would know my routine and sometimes they wouldn’t.
My former nurse had taken extensive notes and made sure she transferred them to my permanent records. Everything about me, how we “did” things, and what supplies they needed to bring were all there. Each time a new nurse came, they were always surprised. They would bring wrong supplies and say, Oh I didn’t know that. I learned to retell everything I could think of each time I got that evening phone call. And still, they constantly didn’t know things or were nonplussed at the care I needed. I’m sure there is not a “standard” for each patient. It became stressful and frustrating to continue to never know who would come and whether they would be ready.
I mentioned once that I didn’t like not knowing ahead of time and felt like I was never informed about my own care. I said that the previous month, the nurse was so nonplussed at my way of doing things that were different from what she was accustomed to, that it was not a pleasant experience. That actually got me a steady nurse for maybe 3 visits. I began to count on my “regular”. Having a change of catheter once a month is an intimate thing and having someone who was used to me, my handicaps and my physiology made things easier.
Once again, a new nurse called me tonight to tell me she was coming tomorrow for an assessment. I was immediately on the defensive. I asked ‘for what?’ And she replied ‘the “normal” nurse visit,’ though I can’t remember the exact term she said. I said ‘I was expecting a catheter change soon. not an assessment.’ She said, ‘that’s right.’ I then said ‘but that is not what you just told me.’ So, just to make sure she had seen my records and knew what to expect, I started asking questions. I made sure she would bring the correct supplies and she said yes and listed what she would bring. Well, that was wrong and when I corrected her, she said ‘oh I didn’t realize. I don’t have access to all of your records.’
I can’t tell you how comforting that statement was. The stranger who was supposed to come care for me, change out my catheter, did not have access to information I felt was need to know? In my frustration and anxiety I am sure I was a little short with her. Upshot? She ruined my evening for a couple of hours. It did cause me to make an online statement to the home health care agency about the changes and how the continuing uncertainty was affecting me as a patient. I don’t know if that will make things worse or not. Time will tell…