Living My Best Life

I started this article as 2022 was coming to a close and I was reflecting on all that has transpired and what is presently at hand. I only now feel ready to publish it though as it has been a pretty intense 6 months of 2023 already! As I was reflecting on 2022, I had the following questions and answers and I find myself asking them again now in June of 2023.

Has this been the best year for me? No, absolutely not. Has my life changed for the better this year? Absolutely it has. This acknowledgement led me to the realization that I was and still am living my best life right now. And I'm celebrating it with immense gratitude.

As a result of my medical PTSD, I've struggled with periodic bouts of depression and intense anger with a longing for death that I've experienced since my first surgery at age 9. It didn't help in high school during one of my near-death experiences that I was overcome with the deepest sense of peace I've ever encountered. This peace has left me longing for death even more ever since. So, joy wasn't something I regularly experienced or even thought about, much less sought. To me, life has merely been a waiting period full of suffering. This isn't to say that I've lived an unhappy life. Rather, it's often a life overshadowed by fear - fears of losing my parents or other loved ones, fear of uncertainty, fear of emotional and physical pain, fear of the past repeating itself. 

2021 forced me to dedicate 2022 to focusing on my mental health, learning self-care and allowing self-growth. I started 2021 with emotional turmoil from reliving my own medical traumas while writing my own medical story and my children's book about FAP for publication. This was an intense, emotionally exhaustive and long process - much more than I had anticipated. I ended the year with my 8th abdominal surgery and new, unexplained debilitating chronic pain that would take over 6 months for a diagnosis of Abdominal Migraine. I also was diagnosed with Fibromyalgia around this time, a new diagnosis for me that I haven't even given any thought to until recently. 

I began 2022 with resuming anti-depressant medication and counseling. Shortly after, within the span of a month, two of my family members who had helped raise me, passed away. Not long after that, another family member who had helped raise me moved 2.5 hours away - she was no longer physically close to me in proximity, and it was as though I was losing her too as I was losing those that my childhood life was so firmly founded upon. I was taken back to the loss of previous family members in the early 2000's that shook me to my core. 

In 2022, I added metaphysics courses and EMDR therapy for trauma work to my CBT therapy. While life significantly improved upon appropriately managing the pain of Abdominal Migraine, the end of 2022 wasn't easy either. I started experiencing regular vomiting with the reason only just being determined in May 2023 as that of esophageal dysmotility. I lost another family member and am preparing for the loss of yet another family member. And my trauma work to process not only my past trauma but also my future fears is extremely emotionally difficult work. 

And yet, I'm at a place in my life that I can't deny is the happiest time of my life. I'm cherishing every moment with my parents. I have built a family and life with my life partner, his son and family. I've regained my quality of life after enduring a year of debilitating pain. I'm learning and practicing self-care and healing from my past trauma. I'm maintaining employment, serving in new advocacy roles for the cancer and rare disease communities and celebrated the 10th anniversary of LAP. 

In 2021, I attended my first Reiki session and was confronted by my lack of experiencing joy with a challenge to start finding joy. Through all of the hard work I'm doing for my self-care, self-healing, and self-growth - I can finally say that I do experience moments of joy now in life. And they are absolutely wonderful, and I want more of them. I want them so much so that I often am faced with moments of fear and anxiety to hold onto those moments as they're overshadowed at times by my fear of never having them again. This is becoming a lessening concern though as I am incredibly doing well maintaining self-care after a year of trial and error with how to maintain self-care practices. 

I'm also relieved and grateful to finally know the reason for my unexplained chronic vomiting after nearly a year of this issue only worsening and learning what my treatment options will be for it. It is something I've really been struggling with since July of 2022 that was only worsening and taking a heavier and heavier mental toll. With my esophageal dysmotility, I am faced with very limited options for treatment - a muscle relaxer or surgery - both of which my doctor doesn't like. Fortunately, I previously took Baclofen in 2014 following developing a bulging disc in my neck and didn't experience any side effects from the medication. My doctor agreed to allow me to trial it for my vomiting and so far, as long as I time my doses right and don't overeat, I'm able to keep food and drink down! I've decided to not pursue surgery for two reasons - not only because medication is working but also, my doctor confirmed I have another stricture around my small intestine. And as he reminded me, no one really wants to do surgery on me due to my long history of surgeries and excessive adhesions. I fully anticipate in the future it is likely that I will require surgery for the Whipple Procedure and/or to remove the adhesions creating my stricture. I'd much rather at this point, trade a surgery for esophageal dysmotility for one or both of these possibly needed surgeries in the future. There comes a point when a person becomes inoperable, and I don't want to hasten that time for myself any more than what's absolutely necessary. 

The mental toll I've been under this year has also been compounded by developing Post Concussion Syndrome following a fall in February 2023. This is a subject I will explore in a future post but do not presently feel comfortable publicly sharing the full details of what life has been like with PCS at this time except that PCS has been an extremely challenging and nightmarish experience that no one has been able to truly understand how it's affected me except for my partner, Mike. And that has also been a challenge as it has led me to feel isolated, misunderstood, and dismissed by the majority of people in my life because they don't see or grasp what it's like to have a brain injury that isn't healing at an expected or wanted rate. My brain is still healing with slow improvements, which is something I am also extremely grateful and relieved about and hope that when my brain fully heals that I won't have lifelong complications from the injury. 

It's a difficult process to accept when life changes with no guarantee or even signs of improvement to return to how life was previously. In spite of a multitude of changes occurring in the last 2 years with barely any time to adjust to one change before another arises, I can confidently say that presently I am living my best life and even though there are no cures for my conditions, I'm full of gratitude for where I'm at in my life and I eagerly anticipate a world of wonderful things to continue as time goes on. 

Colon Cancer: A Family Tribute and A Reminder

This March, Colon Cancer Awareness Month, hits harder this year than those previous. Colon cancer runs in both sides of my family and as a person with the hereditary colon cancer syndrome, Familial Adenomatous Polyposis (FAP), I particularly know the importance of colon cancer screening firsthand. 

Due to my FAP, I required my colon to be removed at age 9 as my precancerous polyps were starting to turn cancerous. A fact that was difficult to obtain as my primary care doctor had refused me the necessary referral to be evaluated by a GI specialist - a refusal that could have cost me my life. 

Colon cancer goes beyond me though. FAP runs in my mother's family. She was diagnosed with colon cancer just 3 months after I was born. My grandfather had FAP and had colon cancer as well, he later died from stomach and esophageal cancer caused by FAP. Both of their stories can be read in Touch of Cancer.

Beyond my grandfather, other members in his family likely had FAP including his sister, mother and her two brothers, three cousins, and two nieces. Beyond that, we are unsure who else has since had FAP among their family lines. 

Colon cancer also runs on my father's side of the family. In his family, my grandmother died of colon cancer and two of my aunts have had it - one being my aunt Martha who we recently lost.

My aunt Martha was extremely healthy her entire life until she developed colon cancer - likely about a year or so ago. Good genes and long life run in my dad's side of the family - several family members living into their 100s. My dad is the youngest of 7 siblings - the oldest one is still in good health at age 89.

Martha was 83 and could have likely lived a much longer life if she had completed the recommended colonoscopies to prevent colon cancer. She never went to the doctor as far as I'm aware of since becoming an adult.

She began having symptoms of unexplained weight loss, bloody stools, change in bowel habits, loss of appetite, weakness. We weren't aware of all of these changes - only the weight loss. She wasn't diagnosed with colon cancer until mid-February 2022 when she was basically forced to by my parents after she fainted upon answering her house door. As it was told to me, she figured she had colon cancer just like her mother, but she had been refusing to go to the doctor or hospital out of fear of never returning to her home. Unfortunately, once she finally agreed to be evaluated, she was diagnosed with colon cancer with metastasis to the liver and lungs that was terminal and given 8 weeks to live. 

Sadly, we lost her on March 22, 2022 - 5 weeks after diagnosis. My last visit with her she was barely able to speak and hard to understand, she had difficulty staying awake. We were fortunate to have hospice care available to keep her as comfortable as possible during the last weeks of her life as the pain did become increasingly worse.

Please take heed from the story of my aunt Martha and complete your recommended colonoscopies for prevent colon cancer in yourself. Please go to the doctor regularly and notify them of any changes in your health, any symptoms you experience. Please do your best to not be another colon cancer statistic.

My Tribute to My Aunt Martha

Martha and Me

My aunt Martha was a steadfast, loved, and integral presence in my life. She was one of several family
members who literally helped raise me from the age of 3 months. She spoiled me to no end as a child whether it was ensuring I had plenty of my own clothes to keep at her house, displaying my portrait on her mantle, or unnecessary gifts such as my 3-foot christmas stocking full of items.

She taught me to enjoy a variety of word puzzles, jigsaw puzzles, solitaire, and mahjong.

She supported everyone in her life, she was always in everyone's corner no matter what. She showed her love through gifts and loans to support others in their life goals and interests. She was ever giving and generous to a fault. She constantly put others ahead of herself even if it caused herself harm. She was ever more concerned about others, their feelings, and not wanting to inconvenience others than she ever was about herself.

If she discovered something that you liked, she would surprise you with a gift of that item even if that meant trying to give you her own possession. Even when she was in her last weeks of life, she wanted to read my children's book to show her support.

She was an avid believer in the power of positive thinking. Every time when asked how she was, her favorite response became "I'm phenomenal!" and said with as much enthusiasm as possible.

She was notorious for bad directions and odd quirks. During one trip to Texas, a route she had driven a multitude of times, she suddenly exited somewhere unfamiliar to me. When I asked her where we were going, she responded "I don't know, I just followed the line". She was able to laugh at herself during such instances.

She was my aunt, who I have held dear in my heart since infancy and will forevermore continue to do so.

Socializing in a Pandemic

As the year is drawing to an end and the holiday season has begun, it got me thinking about how different socializing is with my loved ones.

The holiday season doesn't hold much significance for me although my family does have its own traditions. For Thanksgiving, my parents and I like to go to my favorite Chinese restaurant for the treat of Dim Sum. Since purchasing my home a few years ago the tradition has been for my dad's family to join us for Christmas at my house during the first week or two of December for a meal cooked by my parents. Then my parents and I like to have a meal just the three of us on actual Christmas day. My parents and I decided to downsize our holiday meals a few years ago and it has greatly reduced holiday stress all around for each of us.

This year is different though thanks to Covid. My parents and I have been having a meal together once every week or two. We all wear masks and socially distance from one another. We don't even hug each other anymore. We were planning to have Indian Tacos together with my boyfriend, Mike, for Thanksgiving. That was until Mike was exposed to someone with Covid so both of our families decided to cancel any get-togethers. We both remain asymptomatic and are awaiting testing. To truly know if you're positive for Covid, it sounds as though daily testing is what's actually needed. According to Harvard Health Publishing, if you test too early or too late, there aren't enough viral particles to detect the virus. This has made it more difficult to determine when Mike should be tested as we are uncertain when exactly he was exposed or when that person started experiencing symptoms. We also didn't want to risk a false negative and then expose anyone in our families to us if one of us is actually positive for Covid.

My dad is the youngest of 8, the oldest being in her late 80s. As he and his siblings are older, we decided not to host a Christmas meal for the family. My parents and I still plan to have a meal together, however, that is subject to change as life is unpredictable during a pandemic.

Being apart from family for the holidays is a small price to pay to help maintain my health and theirs. I greatly miss being able to hug my parents but my priority is keeping them safe. This is particularly true as I am still working in the medical field and am exposed to many more individuals than my parents.

Technology has been a blessing during this year so that I may text, call, and video chat my parents and my nieces. It isn't the same as an in-person visit or hugging a loved one. It remains an option to be grateful for though. One of my patients told me that every Saturday he and his wife video chat with all of their children over dinner. Each week someone chooses a recipe and every household makes the same meal that they then enjoy while video chatting together.

It has been difficult to not be able to see my friends or my nieces as often as I usually would have this year. I did take the risk of spending a day with my best friend and her family during the summer, Mike and I went on a vacation to Colorado, and I had an outing with each of my nieces this Fall. I feel as though it has been particularly hard on my nieces not being able to have our usual outings as I want to keep them and myself healthy. I'm fortunate to have the companionship of Mike to help me cope with the stress and isolation of this year. Since we are our own grouping, I am able to receive all the hugs from him that I'm missing from my parents. Not everyone who is isolating has that blessing. I am grateful that Mike and I started dating prior to the pandemic starting as I would not have felt comfortable being involved in the dating world during these times. 

Our families have been kind to offer to drop off a part of their holiday meals so that we may still partake as we are able without potentially placing them or others at risk. This holiday season looks quite different than years past but hopefully, we'll be able to look forward to many more holiday seasons together if we remain safe and cognizant during this time.

As the progress of a Covid vaccine advances, I'm hopeful that by this time next year the world will be very different from what it is like today. I wish you all the best health - physically and mentally during these times. Reach out to loved ones as safely as possible - not only for your well-being but theirs as well. We all need one another, perhaps more now than ever. 

Balancing Chronic Illness and Socializing

Belongingness is a hierarchical, psychological need and socializing is an important part of that for everyone regardless of health. But that doesn't mean we have to be in a near constant state of socializing with others, does it?

I'm a bit of an introvert myself so I need time to myself to recharge after extensive socialization and on top of that, I don't feel well a lot of the time due to my chronic illness. Additionally, in order to support myself my priority is maintaining full time employment. To do so, this requires my constant attention to my health needs so that I may recover from the last week of work so that I may work the next week. It is an ever-present cycle of care that I must balance and protect for my livelihood.


My work as a social worker involves talking to chronically ill patients all day long 5 days a week. Between providing care to my patients and maintaining my relationships with my co-workers, I'm often exhausted upon my return home and I don't necessarily want to socialize with anyone else. I want to recover from the day. I am emotionally and physically drained by this near daily ritual that is employment. And if I am going to socialize on most days, I prefer messaging versus verbal communication except on rare occasions and of course during in-person interactions. I'm also not one for spontaneous social activities - I like to plan ahead so that I may prepare myself to be able to attend and participate as well as I possibly can. The unpredictable nature of chronic illness does not always allow for activities or socialization even with the best intentioned plans.


Balancing a social life and chronic illness is a common struggle. Too little socialization fosters isolation and depression but too much socialization drains us of our reserves to maintain our physical health. We often pay the following day or days after extending ourselves beyond our physical limits. An occurrence we often push ourselves to do on particularly good health days as we want to leave our homes, our routines, and rejoin the world and our loved ones in activity and socialization. Thus, it is far too easy to isolate ourselves away but then the double edge sword of trying to protect our physical health can also cause damage to our mental health at the same time. Maintaining friendships amidst chronic illness can be quite the challenge as well.


My best relationships with others, platonic or romantic, are those with individuals who not only take an interest in understanding and respecting my daily health struggles but also do not take my at times lack of presence personally. I don't require nor desire constant communication and because of my health, I am not always the most reliable for being able to keep scheduled activities. Even if that activity may be a friend coming to my home while I lie in bed in my pjs, that doesn't mean I will physically feel up to a visit even in the most conducive of situations for my health. Sometimes I feel more comfortable being along than in the presence of others.


Nevertheless, in spite of all the challenges and personal preferences, socialization is important for our well-being. Fortunately, with today's technology it is easier and faster to be able to communicate with others than it has ever been before. In person socialization can't be replaced but we can still develop meaningful, deep friendships with others through the phone and social media. We can receive and give comfort to others through these interactions as well. It may not be the same as the physical touch and care of another but it is not something to be dismissed either. Regardless the format, we must continually strive to balance our social needs and our health needs for the best outcomes for ourselves.

Keeping it Simple

A few years ago I underwent an intensive transformative time as I was separating from the love of my life and in the midst of this heart wrenching, soul destroying period I was also losing others in my life I hadn't expected.


It was at this time that I wrote the following revelations in Let the Fire Burn :

"No longer care what others think of you. When you lose respect for someone, that person's opinion no longer means anything anyway. Don't waste yourself on those who have already lost your respect. Cherish those who are true to you - those who are supportive, loving, caring, and there with you through the brightest and darkest times of your life - not those who try to create dark times, tear you down, harm you with their malicious intent and manipulations, leave you without explanation. Don't let yourself succumb to the power of others, especially when it is a harmful power. You don't have time for that nor should you.

Don't take the dangerous, personal issues of others on as your own. People will attempt and succeed at betraying, manipulating, deceiving, and harming you. The reasons for others to inflict such pain on another is deep seated within them. Stop trying to decipher the reasons behind their actions. Their reasons don't need to make sense. Their reasons are just that, theirs. Not yours. Do not take on more pain simply because another is engaging in harmful behavior towards you."

That year I learned a multitude of lessons, none of which were easy. Not only was I having to cut ties with others of my choosing but I also had others choose to cut their ties with me. I felt abandoned and betrayed by those I held close for so many years, individuals who I had bared my soul to. It had all been in vain. It didn't matter how much I had cherished individuals in my life, nothing could stop what was being set in motion.


And so while in my own depths of depression, I had to learn to let go. Letting go didn't come easy to me but at some point that changed. Instead of holding onto feelings of abandonment and betrayal, I focused on the freedom from drama. My life was chaotic enough as it was, I certainly didn't need added drama. I stepped away and allowed others to do the same and when I accepted that I was able to let go of the stress caused by others.

Nowadays I keep my circle tight. Outside of work, there are few who I deeply engage myself with. It's not anything against others, it's a matter of simplification. With fewer people, there is less stress and mess. Those I remain close to also accept that I may not talk or visit them for long stretches of time. We both know though that the other is just a call away if one of us is needed for anything. We don't take things personally with each other and we don't create drama for the other. These are deep, meaningful yet simple friendships that sustain us. These are the type of friendships I not only want but also need.

It's okay to take a step away from someone or something. Sometimes it is necessary for our mental health. Learning to step away has taught me not to take the actions of others personally even if it was meant to be personal. It no longer matters. What does matter is self care and happiness. These are things that are within our own hands and others cannot take it away from us without our permission. I stopped giving my power over to others and I've never looked back.

Why I'm Grateful I Didn't Become a Mother

For the majority of my life I planned on having a child and I was going to do what was necessary to have a child and end the cycle of Familial Adenomatous Polyposis (FAP) in my family with me so that I wouldn't pass it on to my child. I had a surrogate ready and willing and we were saving for the IVF that would be necessary as well as the egg selection to prohibit utilizing my eggs that had the FAP gene. However, I never felt quite ready to take the plunge and start the IVF process. The timing seemed off but the longer I procrastinated, the older I, my husband and my surrogate became nearing the age that pregnancy may not be recommended. I also was heavily concerned with the risk of pregnancy complications to my surrogate and if necessary, how the restrictive abortion laws of our state would affect her if she required to terminate the pregnancy in order to protect her health and life. I couldn't bear the thought of being the cause of harm or death to her when she was doing me a favor by agreeing to be my surrogate. After a lot of deliberation, I came to the conclusion that it would be better that we forego attempting to have a child and so I said goodbye to that dream. It was a heart wrenching decision that took a long time to fully process and accept. It was a difficult decision but I knew in my heart, it was the right decision for me.

And then a year later, my life changed and I was divorced. I not only was grieving the loss of my marriage but I was also re-grieving the loss of my dream to have a child. Even though I had decided to forego becoming a mother, with the divorce I was forced to fully let go of that dream unless something once again drastically changed in my life. If I were to become a mother, I would either have to make the conscious decision to attempt IVF with a donor or another life partner, adopt a child, or become attached to a life partner who already had a child.

In spite of all my dreams to become a mother, I am grateful that I am not a mother though. Deciding to become a single mother would not be an easy task and not one that I could easily financially afford either.  It would be a difficult life on my own as a single mother, financially and physically, and I still would face the struggles of living with chronic illness and caring for a child as before but now I would be on my own doing so. Finding a life partner with a child already is a real possibility as it is hard to find someone around my age who doesn't have a child or children.

I've also become accustomed to my life as it is and as much as I previously wanted a child, I don't feel as though I'm missing out. I'm still able to enjoy the company of the children who are in my life and I'm able to do so without the stress and financial burden of raising a child. It is a well working system actually. I'm able to engage these children in fun and exciting activities when I'm able to do so and if I'm sick that day, I simply need to tell their parents so. I've also been blessed with these children being understanding and supportive when I am feeling ill.

The decision to not have a child is not necessarily an easy decision and it takes time to process. It was a long road to travel but ultimately I am content with my decisions and where my life is now. It has been helpful in my acceptance to acknowledge the realities of the struggles I would be presented with in my situation as well as the good things that make up my life. I've discovered it is possible to live happily childless even though that was not my initial plan. I have made peace with my life decisions and it has helped me to appreciate my life just how it is.

Cruising to Hawaii and Beyond

My parents and I decided to embark upon another cruise for this year's family vacation - this time to Hawaii and British Columbia.




Lahaina, Maui

My mother and I both have Familial Adenomatous Polyposis and Short Bowel Syndrome - she has an ileostomy whereas I have a straight pull thru. Vacations and activities are always a concern as we require daily medications to help us function and my mother requires to change her ostomy appliance approximately every 4 days. On our last vacation to Florida, my mother required almost daily ostomy changes due to leaks and she almost ran out of appliances. She even had to change her ostomy appliance while in the airport on our way home! She was blessed though without any issues with her ostomy appliance this trip even though she packed 14 changes for our 11 night cruise just to be on the safe side. I took my Lomotil medication daily to help slow my Short Bowel Syndrome to allow me to participate in activities. Unfortunately, Lomotil irritates my intestinal ulcers causing bleeding and risk of lower hemoglobin at a faster rate thereby shortening the length in-between iron infusions and the effectiveness of my daily iron medication. I also have to be mindful of my Lomotil because it can increase my risk of intestinal blockages. My chronic nausea was exacerbated by tour buses and the rocking of the cruise ship at times but overall remained manageable.


We flew into Honolulu on the island of Oahu and spent three days there before the ship left for the


Hanauma Bay

island of Maui. We spent an extra night in Oahu to allow us time to travel to Waikiki so that I could obtain another Hard Rock Café shirt for my collection. While in Waikiki, we enjoyed a seafood dinner on the beach at Hula Grill. While roaming around Waikiki we watched street performers sing and dance. The following day we spent the morning at Pearl Harbor to visit the memorials and museums there before embarking upon the cruise ship. On our third day we went on an island tour that took us to the National Memorial Cemetery of the Pacific, Hanauma Bay, and Halona Beach Cove and Blowhole.

Me doing IFly

The next day was a sea day and we cruised by the Napali Coast on Kauai - a sacred place to Hawaiians with a mountainous shoreline. While at sea my mother and I participated in IFly Indoor Skydiving on the ship. We were both nervous as we are not particularly thrill seekers but by the end of it we were glad we had the experience. One participant was in the tunnel with the instructor at a time and the instructor communicated through hand signals on what we needed to do in order to maintain stability in the air. He didn't let us float too high or too low and ultimately it was a fun experience. The ship also had a flowrider surf machine available at no additional cost to passengers but that was beyond my mother's and mine's interest level although it was enjoyable to watch others attempt and even succeed at the flowrider.

We arrived in Maui for two days allowing us time to attend a luau where we learned about and


Maui Plantation

watched Hawaiian dances, clothing, and traditional Hawaiian foods. We roamed around Lahaina, Maui looking at local shops, restaurants, and museums. For our second day in Maui, we went on a tour taking us to the Maui Tropical Plantation where there were beautiful gardens and a restaurant with gift shop, Kepaniwai Park that showcased houses and gardens of various nationalities that have become a part of Hawaii, and McGregor Point and Hookipa Beach Park on the North Shore where we saw giant sea turtles on the beach and surfers amongst the waves.




Victoria, British Columbia

We spent the next 5 days at sea making our way to Victoria, British Columbia. Once there we spotted whales, seals, sea lions, an otter and two bald eagles while on a whale watching tour before heading to Vancouver, British Columbia. On our way into Vancouver we passed under a bridge where we were greeted by onlookers and the media as our particular cruise ship was the largest ship to pass under this particular bridge and was the first time this particular cruise ship had done so. It was an exciting moment onboard as it seemed all 4,500 cruise passengers gathered on the upper decks to watch this moment. It was hard not to get caught up in the excitement of all the other passengers and onlookers. We were allowed to disembark in Vancouver but decided not to go sight seeing as we had completed a tour of historic sites in Vancouver on our previous cruise to Alaska.


The next morning we easily made our way to the airport as taxis were waiting for us and we had a smooth flight home. I had always wanted to visit Hawaii and I'm grateful I had been able to share this experience with my parents.

What We Need From You

Chronic illness is a challenge, period. It's a challenge for those who live with the illness on a daily basis, for caregivers of the ill person, and for those who are involved with the person outside of the home. Chronic illness often leaves those in its wake feeling frustrated and helpless. The ill person struggles to live daily life with the symptoms of chronic illness and friends and family are limited on what they can do to help the ill person. To make matters worse, those of us with chronic illness are often hesitant to ask for help from others due to feeling burdensome and are frequently at a loss ourselves as to what may be helpful. To help all of us, here's a list of things we need from you due to chronic illness.

We need you to be available.
Chronic illness can be extremely isolating at times, particularly if it is a rare disease. Depending on the diagnosis, it can be difficult to identify and communicate with others with the same illness. Social media has helped close the distance among individuals with the same illness but in person visits remain different from online communications. We are further isolated due to difficulty to physically leave our homes except for our medical appointments. Even when we want to visit with others we may not physically feel up to visiting regardless of the communication form. We frequently experience hospitalizations and may only experience encounters with medical providers. Your presence in person, on the phone, or online is a tremendous support to us when we are able to do so.

We need you to listen and encourage.
Due to the elevated risk of isolation among those with chronic illness, we are at higher risk for depression. We easily become frustrated, discouraged, and depressed regarding our health issues and daily struggles. Your willingness to listen to our concerns and to encourage us along the way has an immense impact on our mental health.

We need you to be understanding and forgiving.
Changes in our health and abilities often causes us to feel angry and frustrated as we are adjusting to chronic illness. Furthermore, when we don't feel well we may be ill tempered. We don't mean to direct our frustrations and anger toward others. A gentle reminder when we are acting unfair will help us to realize any damaging behavior and allow us the chance to correct any harmful behavior. Your understanding and forgiveness is paramount in this process.

We need you to help us feel accepted and loved.
Chronic illness typically means changes to our bodies and abilities that may not be visible to others but we remain acutely aware of such changes. We may have difficulty accepting such changes and become insecure and self-conscious of our bodies, symptoms we are experiencing, abilities, and our self-worth. We all want to be accepted by others and this desire may be heightened by chronic illness. Your acceptance helps us to accept ourselves when we are struggling with self-love and acceptance.

We may need your physical assistance.
Chronic illness is high maintenance requiring ongoing medical management that includes frequent medical appointments, tests, procedures, medications and more. These tasks are demanding physically and mentally. As abilities are challenged by chronic illness, we may require your physical assistance in the form of transportation to appointments, assistance obtaining and taking medications, household chores such as cooking, shopping, and cleaning. Changes in our abilities often leaves us feeling as a burden on others resulting in our hesitancy to ask for physical assistance even when it is greatly needed.

We may need you to help us find assistance.
Chronic illness can easily create financial difficulty due to inability to work temporarily or permanently. Our finances may easily be overcome with medical expenses. Locating appropriate resources is not an easy task when one is sick. Therefore, your assistance in locating and applying for resources may be of great service to us during a time that we are having difficulty physically or mentally functioning.

We need you to help advocate.
As a patient, we benefit from advocating for ourselves but your advocacy on our behalf would also be advantageous. We may not always have the physical fortitude to speak up or we may forget questions to ask. You can help us by attending appointments with us and listening to the information presented by medical providers. Additionally, advocacy efforts on a larger scale directed toward public awareness and legislation are stronger with participation by patients and loved ones.

We need you to help us enhance our physical comfort.
Chronic illness often is exacerbated by physical symptoms that are distressing and even painful. We've learned little tricks to help ease our discomfort such as using heating pads, rubbing a painful body spot, or even taking a nap. When you are near, you can help by handing us objects such as a heating pad or our medication so that we may limit our movements, particularly when movement is painful. Sometimes a gentle rub on the afflicted body part or even something as simple as playing with our hair can be soothing. We often fight fatigue that negatively affects our sleep schedules. In such cases, helping us limit our nap time will help us maintain an appropriate sleep schedule while boosting our energy.

We need you to take care of yourself.
Lastly, we realize that providing care and comfort to a chronically ill person can be difficult on others and want your well-being to be taken care of as well. Caregiver burnout can be detrimental to all involved and the last thing we want is our illness to be harmful to you. We understand that one cannot provide around the clock care for us and maintain one's own well-being. Self-care is important for everyone, not just those with chronic illness.

We may not say it enough but all your efforts to support and assist us in the walk of chronic illness is greatly appreciated and we are far better off with you in our lives than without you. We thank you for all your efforts.

A Look at Caregiving

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.

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.

FAP and Lynch Syndrome Conference

The University of Michigan sponsored a Hereditary Colorectal Cancer Family Day this November in Ann Arbor, Michigan. This wasn't the first year for the family day, but it was my first year to attend. I asked my mother, who also has Familial Polyposis (FAP), to attend with me. Although she was reluctant at first to travel the distance for a two-day trip, she was ultimately glad she attended.



Me and my mother, Ina. Travis, Carleton, and his son Kevin

We hopped on a plane on the morning of Friday, November 10 and made our way to Detroit, Michigan where we were warmly greeted by Kevin, a fellow FAPer and advocate for FAP and Lynch Peer Support Group in Michigan. That night we were privileged to enjoy a small meet and greet with fellow FAPers - Kevin, his father - Carleton, and Travis with Hereditary Colon Cancer Foundation.

The following morning the conference started, and we learned about a variety of topics related to Lynch Syndrome and Familial Polyposis. There were an estimated 60 attendees this year - primarily from Michigan. There was a variety of speakers including genetic counselors, doctors of Gastroenterology, Internal Medicine, Surgery, a Dietitian, and Travis.

We learned a great deal of information during this one-day conference. As a child, I had genetic testing completed to confirm my Familial Polyposis suspected diagnosis, but I don't remember ever talking to a genetic counselor afterwards. I visited with one of the genetic counselors to learn more about this area that I hear others talk about frequently. Genetic counselors help individuals gain access to genetic information and technology, genetic testing and diagnosing, and understanding hereditary conditions. They also can help an individual with a hereditary condition obtain testing and counseling for that individual's family members to determine who else in the family may have the condition.

My mother and I weren't very familiar with Lynch Syndrome before this conference. We learned about Lynch Syndrome from genetic counselors at the University of Michigan Cancer Genetics Department and Dr. C. Richard Boland, himself, who found the gene mutations responsible for Lynch Syndrome. It was interesting to learn that there are 5 different gene mutations that can occur to result in Lynch Syndrome and depending on which gene mutation one has, it will vary the type of cancers the person is predominately at risk for developing. Both syndromes have autosomal dominant inheritance meaning an individual has a 50% chance of inheriting the disease if one of their parents also has the gene.

Lynch Syndrome is also known as Hereditary Non-Polyposis Colon Cancer as the colon isn't carpeted with polyps in the 100s to 1000s as is the case with Familial Polyposis. Although both syndromes have increased risk for other cancers, Lynch has a high occurrence of colorectal cancer, endometrial, and ovarian cancers as well as elevated risk for stomach, liver, urinary tract, central nervous system, small intestine, and sebaceous gland cancers. FAP on the other hand has elevated risks for cancers of the thyroid, small intestine, liver and smaller but still elevated risks for central nervous system, stomach, pancreas, and bile ducts.



Adenomas (Pre Cancerous Polyps) can look different

Screening for cancers is essential for adequate care of Lynch Syndrome and FAP and this includes regular endoscopies and colonoscopies for cancers of the GI tract. Doctors John Carethers, D. Kim Turgeon, and John Byrn explained the colon cancer processes, technology, and techniques used for screening, colonoscopy preps, and surgeries involved for those with both conditions.



Adenomas, precancerous polyps, can vary in shape and size which is why the colonoscopy prep is so important to help the doctor properly identify polyps within the GI tract. There are various prep options including drinks, enemas, meal preps, and pills to help ensure proper cleansing preparation.

Michigan Medicine's Dietitian explained ways to help reduce the risk of colon cancer with healthy eating habits and exercise. It was recommended to:

For the best results, your stool should become light and transparent,

like the example on the farthest right

• Maintain a healthy body mass index
• Exercise for at least 30 minute a day
• Avoid sugar -energy dense foods and drinks including alcohol
• Eat a variety of vegetables, fruits, whole grains, and legumes
• Limit red and processed meats

Grilling or smoked meats have also been shown to increase risk of cancer as charred or burned meat contains carcinogens. Also, the use of a multivitamin, calcium, and vitamin d supplement have been shown to help reduce cancer risk although should be discussed with your doctor.

As genetic counseling plays an important role in identifying hereditary conditions, it is also important for communicating with one's family members for their own genetic testing. We heard from a genetic counselor and a patient panel about their experiences talking to their family members about genetic testing and the assistance received from genetic counselors with family members.

Travis, with Hereditary Colon Cancer Foundation, shared his experience with FAP and ways to advocate for awareness and education of the hereditary colon cancer syndromes. Dr. Elena Stoffel closed the conference with learning about medical advances to prevent the need for chemotherapy such as immunotherapy and gene therapy.

The University of Michigan, Michigan Medicine Department made registration available for a research study of microbiome identified through one's stool and a genetic registry. My mother and I decided to register for both projects.

The Family Microbiome Project looks at the bacteria among family households - families with and without Lynch or FAP. Although this project is currently enlisting family households, they are interested in individuals for a future research project.

The University of Michigan Cancer Genetics Registry has enrolled approximately 6,000 individuals from 4,700 families. To enroll an individual simply needs to have a hereditary cancer syndrome or personal/family history that is possible for one. Enrollment includes consent, medical and family history questionnaire and potential for a blood or saliva donation for research purposes. One doesn't have to reside in Michigan to enroll. Those registered are also notified of events such as the Hereditary Colorectal Family Day. If you're interested in enrolling or learning more, contact Erika Koeppe by email or calling 734-998-1274.


If you're in the Michigan area and interested in a support group for Lynch or FAP there are two support groups to choose from:

• Gilda's Club of Greater Grand Rapids - Alice 616-885-6426
• FAP and Lynch Syndrome Peer Discussion Group - Kevin 734-476-7425

If you're interested in establishing your own support group, read Kevin's tips here: Finding or Establishing Support Groups

My mother and I had a great time attending the conference and would encourage you to attend any future conferences for networking and educational purposes.
It was incredible being in a room with so many others with the same condition at once!

A Caregiving Father

I've been blessed with two of the best parents any individual could dream of having in their lives. There isn't enough time or enough words to properly describe the depth of my love and admiration for my mother and father. I am often overcome with overwhelming gratitude for each of them. I am in no way unaware of just how blessed I am to be their child. I have a special relationship with both of my parents. And although I am happy to sing both of their praises at any given moment, I dedicate this to my father.

Our Family. 2017

Courtesy of K. Talley Photography

Today celebrates Father's Day in the US and marks the end of Carers Week, celebrated in the UK. Why are these two celebrations intertwined for me? Because my father is a double duty caregiver. My mother also has Familial Adenomatous Polyposis (FAP) and Short Bowel Syndrome. Together we walk the life of chronic illness - the same chronic illnesses. She is no doubt my hero and my inspiration for living chronic illness with grace and dignity - to the best of my ability. However, my dad is my rock and her rock as well. My mom is more than willing to help provide caregiving to me when I'm in need but she does have limitations due to her own health. Fortunately for the both of us, my father is in good health and is able to provide caregiving to both of us. Sometimes even simultaneously, such as during my childhood when my mother and I were both hospitalized at the same time. My mother opted for admission to the adjoining children's hospital I was admitted to in order to reduce the burden on my father. A sacrifice I will never forget as this was not her hospital of choice nor would it be mine as an adult.

Not only has my dad been the provider of our family and our rock but is he is also ever willing to provide care when needed. My father married my mother without much expectation or anticipation of what was to come. My mother knew she had FAP but never dreamt it would affect her or any future children the way it has. As you can read in her story at Destination XRide's Mom's Corner, she anticipated her life with FAP would be much like her father's had been throughout her life at the time.

My birth would mark a change for my mother and grandfather's health with FAP. Later my grandfather would require radiation that wreaked havoc among his body and an ileostomy. Eventually, we would lose him to FAP polyps in his stomach that developed into stomach and esophageal cancers. But until this point, he simply lived with a limited effect of FAP. He remained active and in relatively good health for having FAP. This was my mother and father's expectation for my mother.

The reality became clear though a mere 3 months after my birth. My mother had colorectal cancer and not only would it claim her colon leaving her with an ileostomy - it would nearly claim her life as well. My father, a spiritual person, laid his fears and concerns out in prayer and surrendered to whatever would occur - losing his wife of 5 years and becoming a single father or being able to live his life intact with both is wife and their sole child. Children, especially babies, weren't allowed in the hospital ICU unit where my mother was receiving critical care. Yet the nurses saw my mother barely hanging on and let my father bring me in to see my mom. I've imagined this visit countless times in my mind's eye. These visits proved to be a source of strength for my mother as she recovered to continue her marriage and raise her daughter. The doctors though would advise my mother to not bear anymore children as her life depended upon it.

My parents' lives drastically changed with my birth - not only did they welcome a daughter into their world but they also were forced to welcome chronic illness into their world as well. My father never let this alteration in their life plans hinder or alter our lives more than necessary. He graciously accepted the role as caregiver to my mother and later to myself as well. With great love and care, he consistently provides for us in any fashion we need. He is indeed our rock and we are far better because of this life foundation he provides without hesitation.

To all the fathers out there who meet the needs of their families and provide the ever life saving caregiving required, Happy Father's Day indeed.

Accommodating Holidays

The holiday season is already starting. It's a rather busy time for the majority of people between parties and meals amongst family, work, and friends circles. It's not even December and my month is already booked with holiday festivities.

The holidays tend to be a stressful time for everyone. The hustle and bustle of preparing our homes, traveling, hosting others in our homes, gathering gifts, attending celebrations, and more. However, for those of us with chronic illness there is an added stress of accommodating our health around the demands of the holidays so that we may also enjoy the holidays.

Whether we're traveling or we're remaining local, there's always concerns surrounding the holidays that we need to address for our own self-care and enjoyment.

I've already had to make such accommodations by changing the date of the gathering I'm hosting so as to allow myself to be able to physically attend a work gathering. My parents and I were concerned that I wouldn't be able to physically complete both one same day, even though the times didn't conflict. But would I physically feel up to both parties in the same day? Most likely not.

Many of us have dietary restrictions to take into consideration. This is easy enough to control if we're hosting holiday celebrations but is another ball game if we are visiting another household or party. We may not be able to enjoy the available foods or we may need to limit our intake to reduce the side effects of eating. This can also apply to activity accommodations. For example, I must be mindful of what and when I eat when wanting to participate in activities as food intake worsens my short bowel. This was another consideration for scheduling parties as I often experience pain and nausea after eating that can last for the remainder of the day.

For some individuals activity reduces GI distress whereas for those like me, it increases GI distress. I'm able to better control my short bowel frequency when I limit my movements. In order to enjoy activities that require physical activity I must limit my food and take medications to slow my short bowel.

Pill burden is another common accommodation, particularly with meals. For some this can be embarrassing as it can lead individuals to feel that it draws attention to themselves and their health conditions. Others are bothered by the sheer number and frequency of medications required. When traveling, toting around multiple medication bottles is a hassle that takes up valuable space for other necessary items, especially when flying. Yet keeping medications in their respective bottles can be necessary when flying to reduce confusion about medication necessity and to comply with states laws regarding prescription labeling.

Flying tends to always weigh heavily on my mind with my health condition. This was worse when I had an ostomy but still remains with me even without an ostomy. When I had an ostomy I had to be mindful of how many supplies I had packed, preparing for a TSA search, always worried that I would encounter a TSA agency who would try to challenge my medical necessity for my supplies. What if my ostomy leaked while I was in the airport or while flying? Did I pack enough supplies to last during my visit? Now I worry more about restroom access due to my short bowel. Will I have enough time to use the restroom adequately before boarding? What if we have a delay on the tarmac and we aren't allowed to exit the airplane? What if I urgently need to use the restroom and I'm not allowed to use the lavatory? The what ifs run rampant when I'm flying.
The what ifs reduce in number when traveling by car as public restrooms are fairly excessive in number in the United States although does decrease in number when traveling through rural areas. For travel tips with an ostomy, review the UOAA's Ostomy Travel Tips.

Whichever holiday you may be celebrating, wherever you may be celebrating, I wish you the happiest of holidays and enjoyment with your loved ones.

From a Child's View

"Is there any part of your body that hurts that would keep you from playing tag?" my niece asked, peering up at me with her big brown eyes full of hope that this time I could play with her and her sister. "I can play" I answered as a smile spread across her face.

This time I felt well enough to chase my nieces through the outdoors. I knew I needed to accept this play invitation as I may not feel well enough to join in their fun and games later. More often than I prefer I've had to tell the children in my life that I was too sick feeling to actively play with them. Instead, I'd watch from the sidelines secretly yearning to join them just as much as they wanted me to play with them. My heart breaks each time I have to decline their invitations to play. And although I see the disappointment in their faces, they've learned to understand that sometimes I just can't play.

My nieces actually know very little about the Familial Adenomatous Polyposis (FAP) disease that my mother and I share. We are the last survivors in our particular branch of the family line to have FAP. For this reason, it isn't overly necessary for the children of our branch to know a lot about FAP as their parents, siblings, and themselves are negative for the disease. They simply know that my mother and I are frequently ill or in pain and we're limited in our activity because of this. Occasionally they will ask questions, which we are more than happy to answer but most of the time they accept without question when we are ill.

I've been amazed watching my nieces modify their play to adapt to how I'm feeling so that I can typically still join them in one way or another. They have never acted resentful when I've been unable to play with them and instead show concern and care. They don't question or comment when I require frequent restroom breaks or rest periods. This has become normal to them as they have witnessed my health status all their lives.

I've found that allowing a child to witness how chronic illness affects a person greatly shapes how the child will react to chronic illness and its effects. Without exposure and knowledge, an individual is unable to grasp how chronic illness affects one's life. Developing empathy doesn't require medical knowledge of an illness but rather a practical understanding of the effects on everyday life. Throughout my nieces lives they've been aware when I'm ill.

We can share information about our illnesses without delving into too deep of information or scaring a child about our own well-being and safety. It's more important that the child know us and our love than the specifics of a disease, particularly when the child doesn't have the disease. We don't necessarily need to explain our disease to the children in our lives as long as we are real, loving, and ourselves with them. They will come to know us as we are and discover what is truly the most important - our relationship not our health.  

Appreciating Death

Through my own near death experiences and years of losing loved ones, death has become a far too familiar part of my life. Others view me as having a death orientation and perhaps this is true. My own health scares have left me unafraid of the passage of this life into the next realm and I've become skilled at saying goodbye to those I love. One can't help but gain this skill when the majority of your friends and acquaintances are those with chronic illness - groups I've come to surround myself with personally and professionally. I can't count the number of family, friends, and patients I have lost over the years since I was almost 2 years old.

I traveled across country with my parents to say our final goodbyes to one of my great uncles. We resumed our yearly visits 6 years ago and as my great uncle's health began to decline and he transitioned from his own home to a nursing home, we began preparing with him. He was becoming closer and closer to his 100th birthday. He was tired and he was ready. Each year we wondered if he would live to see his next birthday and each year he continued to surprise us as well as himself with his longevity. The time was finally nearing. We surrounded him and attempted to comfort him during his bouts of pain. We voiced our love and understanding to him, letting him know that it was time to let go. As we parted with him on the second night, I told him that I hoped he would find peace that night. He turned his head and looked up at me with a knowing look in his eyes. I smiled, fighting back tears, and told him how I loved him and lightly kissed his forehead one last time. That night he passed into the other realm. At age 99, four months shy of his 100th birthday, he finally gained the peace he desired for so many years.

Death is a learning process for those preparing to enter the other realm as well as for those left behind. Someone facing impending death over a period time is given a gift of self understanding - learning the depths of one's fears, hopes, regrets, personal beliefs, and gaining wisdom and insight into the meaning of life and what is truly to be held sacred and important in life, rather than the fluff. This can be a time for intense self reflection that doesn't necessarily come easily to everyone until forced to consider one's inner depths.
No matter how many times we go through the process of losing a loved one -  saying our goodbyes or worse yet the inability to say goodbye due to no forewarning and contributing or participating in the funeral services - it never becomes an easy process, simply a familiar process. We know what to expect, we learn how we obtain closure and grieve, and we learn tricks to make the process and funeral arranging easier and smoother. We learn our own preferences for our own services and what is needed for arrangements. We learn about ourselves just as much as we do about others during such proceedings. Individual personality traits become transparent - whether good or bad traits.

Through death, we are able to appreciate life. I gain closure as I grieve through the sharing of life stories of my loved one. Through this process, I'm reminded of the wondrous times of my loved one's life and fond memories together. When I think of my loved one, I don't think about their death instead I think of the stories shared.
When one of my aunts who helped raise me unexpectedly passed away, I don't remember her death and service so much as I do the weeks and months following her death as I spent multiple evenings throughout the week with my parents, aunts, and uncles sharing family stories as we sorted through her belongings. As my grandfather's body gave way to stomach and esophageal cancer, I spent as many days as possible with him. When I recall his passing, I'm not reminded of his death but of being near him, falling asleep next to him watching television in his big over sized bed like I did so many times throughout my childhood.

Death and the events following one's death are not occasions for overwhelming sadness but rather a time to celebrate and honor our loved one. A time for family and friends to come together and honor the individual's life with stories so that the individual may live on in the hearts and memories of those remaining.