Saturday, June 9, 2018

A Look at Caregiving

life's a polyp

This is a Guest Post by My Father


My daughter asked me to write about my experiences as a caregiver to herself and her mother. It made me contemplate for a while as I really don't consider myself a caregiver. In my heart, I am just a husband and father doing what those roles routinely require and the fact that my wife and daughter are chronically ill is just another dimension to my husband and father roles.


Cambridge Dictionary defines a caregiver as "someone who provides for the needs of people who are ill or can't provide for their own needs". So, okay, I guess I am a caregiver even though I consider my role more of that as a husband and parent. I don't consider providing health related service to my family any different than changing diapers for my daughter when she was a baby, it's just one of those things you do. My wife is fond of saying "You do what you need to do".


I also provide service for my wife and daughter beyond their illnesses wherever they need support. For example, my wife required a new car battery. I completed the task at hand as she was in need of assistance and she has a weight lifting restriction. I tend to categorize my service as things that need to be provided because I am the best source not because of their chronic illnesses. I complete certain tasks that are beyond their individual skills or abilities, it is more than I expect them to do. They are health related although I didn't consider the health portion in my willingness to complete such tasks.


A lot of routine husband and parent duties are health related but a lot are just duties that aren't necessarily required because of chronic illness and others cross categories. I complete required maintenance of our homes as well as medically required tasks such as my wife's daily eye drops, transportation to medical procedures, or picking up prescriptions. My daughter was on TPN for a while during her high school years and my wife and I were both taught how to provide care for her central line and feedings. It became a priority item in the daily routine and we tried to make it a fun activity and family bonding time rather than a time of an unwelcomed dreaded chore.


When we first realized that my wife would be facing a life time of health issues related to her Familial Polyposis and Type II Diabetes diagnoses there was concern on my part about the amount of daily time this would require of myself. In retrospect, it hasn't been much different as the extra work involved became part of being an actively involved family member. There are always things that need to be accomplished on a daily basis and the health related items fit into normal daily activities quite well. It's all part of being an active family member.


Chronic illness is a day by day process that can bring a lot of frustration, anger, depression, and angst for the patient and the family. Being the regularly healthy one in our family trio means that I need to just be a stable, dependable source for the needs that arise on any given day. It may be a comforting hug, a kind and supportive word, a ride to the ER, or taking out the trash and preparing a meal. Because my health is stable, I can provide such services as a caregiver with little burden or difficulty.


life's a polyp
An attitude of welcoming the opportunity to serve rather than resentment of each chore is an essential ingredient in creating a healthy, mutually respectful and loving relationship between caregiver and recipient. Using the time to strengthen bonds, deepen the relationship and draw closer together instead of letting it draw apart and create barriers. Chronic illness is generally no one's fault, it just is; it's something to learn to live with as best as you can regardless of your role. We live day to day, appreciating the good days that are available to us. Being supportive, encouraging, willing and happy to serve, being a support that can be depended upon regardless of the time or day. Instead of considering the extra health related duties as unwanted chores, consider them an opportunity to serve a loved one and perform that service with humility allowing it to be a time of comradeship and an enriching quality time.


Being helpless to improve the situation, feeling guilty as the healthy individual and they aren't, being stretched and stressed can be a daily issue for a caregiver. Utilizing those healthier times to enjoy life together helps to relax and unwind, to reflect and re-group for one's physical and mental well-being is important. Being thankful daily for where you are at this time and place is a good way to quantify the caregiving role and the rewards that are received in performing service to others. Because at the end of the day, as my daughter reminds me with her request for this article: I am a caregiver and I'm honored to have such a role.

Saturday, May 26, 2018

False Hope


life's a polyp false hope

With the changes to my health over the last two years, I can't help but believe that this is the healthiest I will be. Actually, in truth, I believe my healthiest days are behind me and this is my new level of healthy - a step down from where I was and therefore everything else that is to follow will only be worse.

All in all to try to fix the problem of my declining health over the last two years, I've endured 3 upper scopes, 1 lower scope, CT scan, labs including stool specimen testing. And although things have been ruled out as culprits and some culprits have been found, the underlying issues remain - I have chronic nausea and pain. And perhaps this is all primarily from the adhesions as my doctor diagnosed last year. Even if this is the case, the fact then remains that it will worsen as the adhesions continue to worsen and surgery for adhesion removal is inevitable - and so are risks that come with such surgery.

I lived with an ileostomy for six years before I was finally able to have my ostomy reversed with a straight pull through. Reversal wasn't a guarantee for me and whenever there is a surgery involving my remaining intestine, there will be risk of another ileostomy - only truly permanent this time.

life's a polypThis is my fear for the future. Although better equipped to adjust and accept an ostomy now versus when I was a teenager, I still do not prefer an ostomy. With all the problems that my straight pull through has with the development of short bowel syndrome, I still do not regret my decision for reversal and I want to maintain my reversal.
And to further complicate my health, I was recently diagnosed with Acquired Polycystic Kidney Disease. I don't have a family history of Polycystic Kidney Disease and haven't undergone genetic testing for the gene so it is assumed that it is a sponatenous manifestation within me. My nephrologist advised I have an estimated 20 years before I start to experience kidney issues, which at that time it will be likely that my kidneys will start to fail from an abundance of renal cysts and will require kidney transplant or dialysis if I want to continue living. My nephrologist advised that due to my Familial Polyposis, I am greater risk of cysts and cancer occurring. And so I will be monitored once a year with a CT Scan to monitor for cysts and tumors on my kidneys. As long as I can stave off my GI issues from worsening, I have an estimated 20 years of health remaining before I will begin to experience another change in health.

I struggle with this reality and with the present. I'm told to not give up hope for improvement of my symptoms. But at some point, false hope can be dangerous. I want my health to improve and perhaps it will but the odds are, this is it for now. I'm remaining open to trying a few more things but I'm trying to balance myself between positive hope and false hope. I've learned that when we cling to false hope, we are hit hard with a different reality. A reality that we could have been better prepared for if we had accepted the chance that exists for what we fear.





Saturday, May 12, 2018

When I'm Asked How I'm Doing

ask how I'm doing life's a polyp

When you have a chronic illness, sometimes it's hard to know how to answer when asked how you're doing. The odds are, we're not doing very well. We have daily symptoms we're contending with and most of the time we don't feel well but we don't want to admit that to others. We question the sincerity of the question and what is considered to be too much information when we answer. So we lie usually instead of answering the truth - the truth being that we aren't doing well.

I always question does someone really want the truth or just the brief, expected answer so that conversation can move along. I rarely answer honestly. I entered the habit of answering "okay" or "good" even though it was a lie. I was tolerating the moment even though internally, I felt like death warmed over.

life's a polyp
I became tired of answering with a lie and a superficial glancing over my daily health. I wanted a more sincere answer but I also didn't want to dwell on the answer, particularly if my well being is only being sought after on a superficial level, out of societal nicities. I hate the looks of pity when I answer with a truthful "I'm doing horrible" type of answer.

I tried out different answers that felt genuine for me but none felt right. To say I'm functioning is true but it invites additional questioning and feelings of pity I thought. I'm alive didn't work well either for me. I finally settled on "I'm hanging in".

I'm hanging in provides a truthful answer without the invite for pity from others. It allows for further conversation but doesn't require additional questioning. It's clear and to the point - I'm managing but I could be doing better but I'm not worse either.

How do you answer others when asked how you're doing? What have you found works best for you? Share with me.

Thursday, April 26, 2018

What I Learned From Divorce

life's a polyp

When I divorced, I never could have been prepared for what to expect. No one tells you what you should expect, there is no handbook. Your world is turned upside down and you feel like your life is out of control. You simply live in trial and error and comisserate with other divorcees who can relate to your experiences. There is so much you learn during this period that can last for years even. The navigating, the learning may never cease. I'm only two years post divorce and although my married days feel like a lifetime ago, they remain with me although diminished in intensity.

From the initial moment I made the final and clear decision to end my marriage I began to experience an exhilirating time; I was filled with emotions of relief that were freeing to my mind and soul. I no longer had to hold on to the stress and worry that had accompanied me for the months previously while I battled depression and the stress of trying to hold on to everything while maintaining my sanity. With all this freedom, my energy levels soared as I was no longer burdened by immense stress. I started exercising, I could hardly sleep due to my abundance of energy and my excitement for the possibilities of the future. I felt limitless and carefree, unburdened by my final decision.

I began to re-enter the dating world shortly after, as is a common occurrence. Looking back, I realize now that a divorced individual is a mess for at least a year following the divorce and for that person's own sanity and sake, really shouldn't enter into relationships during this time. Refraining from re-entering the dating world for a year would be a very difficult commitment for most individuals. As humans, we long for companionship and intimacy with others. We tend to enjoy the thrill of finding potential new partners and participating in the dating realm. We feel desired by others giving us attention after an ordeal such as a divorce. The options for potential partners is an exciting new world that is reopened to us. It's a thrill that is hard to deny. The first year particularly is for a time of healing and rediscovering one's self. I had an intense amount of energy and drive for my limitless future but my mind was so scattered and pulled apart by all the options that now laid available to me. My mind raced between options and even though I set goals and plans for myself, I didn't stay with a plan for long before racing to another idea and option. It must have been exhausting for anyone listening to my rambling ideas and trying to keep up with my racing mind. Just as I wasn't ready to commit to another relationship, I wasn't ready to commit to even a singular life plan.

I was not ready for an emotionally invested relationship. I began to become terrified of relationships and kept a cold, emotional distance between myself and others. I've never had a great record of dating and I figured this time around wouldn't be any different; only this time I wouldn't marry again. I would forever be entering and exiting dating relationships. I vowed to myself that I would never allow myself to become lost to another, I would maintain my physical, financial, and emotional independence from another. Relationships became an "easy come, easy go" mentality for me as I kept distance between myself and a partner. I began to view relationships as impermanent. I survived what I thought I wouldn't - losing the person I considered my soulmate and life partner. If I could survive that and be happy again, then the same is true for any future relationship; I will survive any relationship ending. I wouldn't allow myself to become overly emotionally invested and as a result, a failed relationship was merely an inconvenience that could soon be replaced by another potential suitor. I spent a year dating men younger than myself and I learned to appreciate men who were closer to my own age. Not only was I not emotionally available but I also didn't want to deal with immaturity or drama. I had experienced enough drama with my own divorce, I didn't need or want additional drama brought into my life by another individual. I wanted simplicity and partners who themselves were an emotionally strong individual. I was tired of being the emotionally strong person all the time. I wanted someone who could stand their own. Although I have allowed myself to find a deep love again with the intent for building a lifetime together, I maintain a conscious eye on my independence. I've learned that with the right person, I don't have to keep a cold, emotional distance between ourselves as a means to protect myself. I can let another into my heart and remain independent and maintain a healthy self. Becoming cold and distant does not make a healthy relationship and now that I've re-opened myself to a deep and loving relationship, I am much happier than I was in previous relationships. In spite of finding a deep love, for good or bad, without any effort I maintain the view of relationships being impermanent.

While navigating the divorced world, I realized that all my new moments are tainted by past memories and experiences during my marriage. This has lessened with time, but there are stinging moments that cross my heart as I remember a time with my now former spouse spouse or when I am embarking upon a new adventure that would have been with my former spouse if divorce had not occurred. It was quite painful as such events would trigger a flood of memories and grief over what was and what was supposed to be. I had a difficult time coping with vacationing and buying a home on my own rather than with my former spouse. I felt as though everywhere I turned, there was a tainted moment that should have been experienced with my former spouse but now was my sole experience. The sting has diminished in intensity and length, but it remains even though fleeting as it is.

My life changed drastically upon my decision to divorce. I gave up a lot but gained a lot in the end. Divorce was not an easy decision; working my way to that final decision was soul wrenching and I spiraled in a well of anger and depression. It was not an easy transition to make, the transformation of myself couldn't be rushed. But as my heart and mind began to heal though from the aftermath, I've come to love my life and everyday I am grateful for this new, even surreal life.
life's a polyp

The upheaval of divorce varies from person to person and situation to situation. This may be
exacerbated any time divorce is contested or involves minor children or property. The entanglement of finances alone can cause extreme stress and friction.

Even when you do your best to maintain independent finances and property from your spouse, I learned that there is always entanglement. If your spouse has financial difficulties, it can be linked to you even when you didn't share finances or property. With this ongoing entanglement due to a previous legal connection to an individual, I realized I wished I had changed my phone number after the finalization of divorce. Years later and I still receive random phone calls connected to my former spouse.

Fortunately my divorce was civil; we even said we would always be there for one another if the other needed. Perhaps this was naivety and wishful thinking in the freshness of our separation. We still have one another's phone numbers and whenever I have questions about anything, he's always willing to provide answers. But would I be able to truly count on him if I needed something? I'm not so sure of that now with the passing of time. Perhaps but perhaps not. With all our civility and promises to one another, I was shocked when I suddenly discovered he had removed and blocked me from his social media platforms. I should have expected it. We weren't what anyone would consider friends anymore. But it was still a shocking realization for me. With one less person in my support system, I had to accept that I may need to lean on my existing support system more heavily due to my health but I also needed to be more independent myself. Our mutual friends now became his and mine; I no longer had his family and friends to call on.

Divorcing was a heart wrenching decision but ultimately it was the best decision for me. It would have been nice for things to have turned out differently, but they didn't. For myself, I must let go of any regrets and instead find my peace and enjoyment in everyday life wherever and whenever I can as I navigate the divorced world.


Other divorcees shared with me what they wish they had known to expect or what they had learned from divorce. See what others had to say:
  • When dealing with property there is the risk of both individual's credit being ruined.
  • Splitting up pets can be emotionally wrenching. - Wendy
  • You may end up taking care of the children all by yourself - Joe
  • You learn who your true friends are and there may not be as many as you thought there were - Tricia
  •  Sometime it's worth asking "is it more important to be happy or to be right?" when considering remaining in a marriage - Amanda
  • Men and women react differently. Where one may act devastated the other may act in the complete opposite. For example "I was devestated and upset, he behaved in a very matter of fact way, was switched off from me completely and had metaphorically closed the door on me and our relationship. It was as if I suddenly had no part in his life or in his relationshp with the children". - Lynley, Top Lady Talks
  • You lose friends, other women may look at you as a treat to them even though you did nothing wrong in the relationship, and it took bravery to walk away - Bree
  • "I lost a lot of things but my mantra was 'I have my freedom'!" - Aileen
  • "It's the kids that matter the most, to make sure they are treated right and always told that they're loved." - Amanda
What are some lessons you wish you had known prior to divorce?

Thursday, March 29, 2018

Living for Work


chronically working life's a polyp

My pediatric GI doctor talked to me and my parents about my chances for Social Security Disability (SSD) Benefits to ease the financial burden associated with my chronic illness since I was a child. I grew up hearing about how I would be able to obtain SSD benefits if I applied. My parents opted to never apply for SSD benefits for myself as they didn't want me to see myself as different from other children and teenagers and were fortunately financially able to withstand the financial burden my health placed upon them.

For me, SSD benefits was never an option truly placed upon the table but I also knew that my doctor and my parents hoped I would be able to physically complete my schooling and obtain full time employment and become a financially independent person - but that this was not a given but rather a hope as none of us were sure how my health would withstand the such physical stress.

So I put forth my full effort into the tasks of life. My parents home schooled me for a year in grade school due to my health not allowing me to meet the attendance requirements of public school during the first year of my surgeries. And in high school I risked inability to graduate on time during another physically trying year with medical tests, procedures, surgeries, and multiple hospitalizations. I was only able graduate high school due to the kindness of one of my high school teachers agreeing to tutor me during my home study absence period.

In college, I endured regular hospitalizations due to difficulty maintaining my electrolytes. My college professors worked with me to allow me to complete my assignments and exams around my hospitalizations as needed. My health stabilized the year I graduated college affording me attendance to graduate school and my practicums with minimal difficulty.

However, when I started my first full time job the stress would become too much for my body. I was traveling around the state on a daily basis, even to the borders of my state on a bimonthly basis. My employer was not overly accepting of my health. After consulting with my parents about my health and financial situation, I was forced to resign for the sake of my health.

I was not defeated though. I allowed myself a month of rest before re-entering the work place with a different employer. I had learned new ways to cope with the stress of full time employment and how to deal with an employer. I succeeded at maintaining my health even when this employer entered the realm of a hostile work environment. I found a new position with yet another employer who works with me on my health issues and have been able to maintain full time employment ever since without difficulty for 7 years now.

With abrupt health changes over the last two years, especially during this year, I began to worry about my ability to maintain full time employment. Without my employment I would become dependent upon attempting to obtain SSD benefit approval and assistance from my parents in the meantime. SSD benefit approval is not necessarily an easy task to achieve and can take years. Even after approval, you are often required to wait another two years for Medicare health insurance to become available.

life's a polyp
My greatest fears in life include not being able to financially support myself and to become nursing home dependent or homeless and to be able to care for my parents as needed. When I was married, I was less fearful of these risks as my home was a two person income home. However, I had to weigh the financial risks I could potentially be under when I divorced. When I divorced, I was accepting that I am solely responsible for my financial well-being regardless of my health. I would be at greater risk of my greatest fears becoming a reality if unable to maintain employment. When I divorced, I learned a new level of independence that I vowed to fiercley protect and cherish for all my days on Earth even if that I meant I had to work until my death. No longer would I allow myself fairy tale dreams of being a stay at home wife - I would forever be a working woman for as long as I required and am able.

And with this new attitude and determination, I admit that I live to work. It's not out of enjoyment or because I'm a workaholic but rather out of necessity for my surival and mental sanity. My health has always been unpredictable causing my future to be unpredictable. I will ferociously hold onto the few things I can control in my life with an intense tenacity. It is due to this outlook, that I dismiss others when they say it's no life to live to work. For others this may be true, but it doesn't hold true for me. Rather, I increase my ability to survive physically and mentally when I focus on maintaining my employment ability for as long as I am able - even if that means I work past retirement age. The more I work, the more financially stable I become, the more I am able to prepare for the uncertain turns my health will take that is chronic illness.