Monday, July 31, 2017

Doubting Yourself

Interpersonal relationships have the capability to hold great power over and for ourselves. We tend to find value within the opinions of others rather than within ourselves. We, understandably, grieve the loss of relationships with others but we far too often lose ourselves amongst our relationships with others as well. It's easy to start to doubt ourselves when it comes to others.

When I decided to end my marriage, I chose to end a lifetime. A lifetime of hopes and dreams. I greatly grieved this loss and I greatly celebrated when I found myself amidst the pain. I survived emotionally and physically. And yet, even with my personal oath to never lose myself again...I still allowed myself to doubt. Doubt of myself, my future, and my worthiness of a blissful future.

With my divorce, not only did I part ways with my marriage but I also parted ways with my lifetime caregiver. I worry about my future with my chronic illness, about who would provide care to me as I age and become more ill. Even though I whole heartedly believe I deserve a loving life partner, I remain amazed when my chronic illness is accepted by a partner. It's that doubt creeping in at the corners of my life, always there ready to pounce upon my fears. I almost can't fathom that another individual would willingly take on my chronic illness and the caregiving it requires. Chronic illness demands much - much from ourselves and much from others. It is unforgiving and high maintenance. Why would another take on such responsibility willingly? We don't even want the responsibility of ourselves. It's as though I've destined myself to a life alone and when someone challenges that belief, I'm left in dismay at such a selfless act.

I recently found myself complacent to the point that I believed no one would ever be willing to accept this caregiving responsibility. I doubted myself without even realizing I was doing so. This realization startled me, especially when soon after I quickly discovered acceptance and care in another.

How could I have allowed myself to place such doubt upon myself? We are all worthy of care and acceptance whether it be from platonic, familial, or romantic relationships. There is always someone who will accept us as is and love us for who we are and that includes our chronic illnesses.

This awakening with the gentle reminder by another of my own self worth was necessary. I realized I couldn't permit myself to continue down such a self destructive path of doubt. I can't risk losing myself again. Losing myself was detrimental to my psyche - I was left with a broken spirit that required extensive self love to flourish again. The work we place into ourselves is excruciatingly difficult and never ending. But the reward is far greater than the work. We must never lose sight of this or we risk losing ourselves once again.

Each of us deserves far more out of life than we realize. It's time we come to the realization and put to the side the negativism, criticism, and doubt that we allow to seep into our hearts. Life is deeply more enjoyable and rich when we stop harming ourselves and instead let our souls flourish in love - love of others and of ourselves.

Sunday, June 25, 2017

Traveling Abroad with Short Bowel

I prepared myself for a few days traveling from the United States to Mexico to attend a destination wedding. With Short Bowel Syndrome (SBS), I'm always nervous about traveling as I need to have an accessible restroom. Without a restroom, my activities are limited and I am at risk of an incontinent mishap. Unfortunately, SBS is a very unpredictable rare disease. My food and fluid intake, activity level, sleep, and medications all affect the intensity of my SBS. If I don't eat or drink, sleep well, and limit my activities I tend to have a better success rate with reducing SBS urgency and even flare ups. However, when I partake in the necessities of life - such as eating and drinking - my digestion process is short resulting in frequent, often urgent restroom trips. Activity furthers my digestive process also adding to the frequency.

Fortunately my travel was only from the middle of the US to Mexico resulting in two flights lasting approximately a total airtime of 3 hours. Not a bad flight time. Needless to say, I was not nearly as nervous as longer flights I've flown such as to Paris, France during my college years. However, anytime I travel outside of the US, I am also anxious about restroom access. The US has a fair amount of accessible and free restrooms for travelers to use. But this isn't always the case in other countries that is further complicated by requiring the local currency when restroom use requires payment.

And so I prepared for my flights. I was lucky that my departure flight was an early morning flight thereby aiding in my fasting efforts to reduce SBS symptoms. My return flight though would be late afternoon meaning I had to decide if I wanted to eat my day's meals prior to flying or fast for the entire day. I double checked that I had my Lomotil medication to slow my bowel and took my pills with plenty of time for the medication to take effect prior to my flight. I opted to forgo the included beverages and snacks on my flights in order to further reduce SBS symptoms and to utilize the restroom with every given opportunity to help prevent additional issues.


Now Amber Resort. Puerto Vallarta
I arrived at an all inclusive resort for the wedding. I was comforted by the fact that I had my own room to myself so I could have private restroom access whenever necessary and I quickly located the public restrooms. Fortunately at a resort there are plenty of restrooms so I wasn't too concerned. Outside of the resort though would be another story.



Cigar Shop and Restaurant

Soon after arriving at the resort the wedding group decided to embark on an excursion to explore the local town and complete some shopping. We took a taxi to a local cigar shop and restaurant. To my relief, it had a free restroom. To my dismay, the group had decided to also eat at the cigar shop. I was once again faced with the decision to eat or not to eat. Do I eat and drink thereby creating increased restroom need or do I continue my fast of food and beverage to limit my need and allow for increased activity? I chose to fast. We would be walking to local shops and a flea market and I was uncertain about the distance and restroom access outside of the safe haven of this cigar shop and restaurant. I chose correctly as there would be a restroom at the flea market but it would be a for fee restroom. I did have some pesos but not in the correct amount needed. I made the short walk to the flea market and we spent a quite amount of time shopping before heading back to the cigar shop to wait for a taxi back to the resort. To my favor though, with the cigar shop's restroom and my decision to fast I wouldn't require restroom access beyond the cigar shop.

The Wedding Group
I wouldn't leave the resort for the remainder of the trip which provided me some relief and freedom. I chose not to participate in any other local excursions although there was an abundance of interesting and exciting options. Such as a Rhythm of the Night boat trip to a nearby island complete with performances and dinner. But again, I had to question if the boat had a restroom and what about restroom access on the island? It was a several hour excursion. Or the 6 hour city tour that the group decided to embark upon. What was the restroom access like for the duration? I opted against such activities but I would still have to face the decision of swimming or not. Of course I wanted to swim but my body needs to cooperate in order to allow for swimming. I would also be faced with the decision if I should eat breakfast or not each morning. Breakfast starts my digestive process in motion and sets me up for possible activity limitation requirements. I chose to risk the activity limitation and ate breakfast each morning - a behavior I don't normally participate in during my regular day schedule. The next day would not go as well as the first day due to my body not cooperating as



needed. My Lomotil medication didn't even seem to phase my bowel. I was blessed with plenty of restroom access but I would have to forgo activities such as swimming this day. However, this was the wedding day and I opted to take a second dose of Lomotil that afternoon in preparation of the wedding reception.

Due to my abdominal adhesions from surgeries, I have chronic nausea and pain when I eat and the nausea has a tendency to strike even when food isn't involved. Such as every morning or when I'm jostled. The next day I would be stricken with severe morning nausea requiring a period of rest before engaging in further activities for the day. I wanted to swim at least once with my friends so I started my morning of nausea with a double dose of Lomotil. The double dose of Lomotil slowed my bowel and with rest my nausea eventually subsided so off to the pool I went. I even managed to eat lunch while at one of the resort pools and I found a pool restroom so that I wouldn't have to travel back to the resort towers when the need arose. I was thrilled with my activity achievement for the day. 

The following day was my last day at the resort and I would depart in the late afternoon. I knew I would likely need to eat at some point during the day but the timing was essential to protect against the SBS. I ate breakfast, realizing it was the safest option. I would fast the remainder of the day including passing up any beverage or snack offerings on the flights home. And once again utilized the restroom at every given opportunity. I made it through US Customs without issue and had enough time for one final restroom use before boarding the last flight home.

To my relief, I had managed my traveling and activities in spite of SBS and I didn't get sick from the local water! It just took some planning and making the better choices for a better outcome. I hope you enjoy travel time and activities in spite of any obstacles as well!


Sunday, June 18, 2017

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
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.

Friday, June 2, 2017

Loving Iron Infusions In Spite of Needle Fear

My energy is beginning to dwindle again. Although still completing work duties, by the end of the work day I'm frequently no longer having any energy remaining. I am so exhausted that daily activities are out of the question, even showering requires more energy than I have some days. I had my follow up appointment with my hematologist and as I suspected, my iron levels were dropping once again requiring another round of iron infusions.

I was apprehensive about starting iron infusions when my GI doctor first recommended it. I had been taking iron tablets for more than 20 years without issue until suddenly in 2015, I could no longer tolerate my iron tablets. Ever since my 2015 hospitalization I've been experiencing chronic nausea and increased chronic pain. Iron tablets were adding to the pain and did lessen when I discontinued the tablets. However, I still required iron or risk worsening anemia. With my hemoglobin dropping and my chronic fatigue worsening, I was desperate to start iron infusions. I no longer cared about my needle fear, I just wanted to feel better.

And so my experimental adventure with iron infusions began. After my first round of infusions, it took about 4 months and I was requiring another round. After my second round, my doctor changed me from ferrous sulfate to ferrous gluconate tablets in an attempt to supplement my iron intake again and lengthen my time in between infusions. With this new addition, I was able to lengthen my in between times to six months! However, three months after the third round and I'm back to the four month in between time.

Sure, every time I sit in the recliner awaiting my IV to be started, my PTSD is triggered. Anxiety begins to overwhelm me. I feel my body automatically sinking back into the recliner more and more, as if trying to be swallowed by the recliner in an effort to escape the situation. I force myself to hold back tears only to fail when I require two or more attempts to start the IV. The fear, the pain making me question why am I putting myself through the torment.

But I remember why I subject myself to my needle fear when I have a weekend full of activity due to overflowing energy. I remember, that energy, that ability to participate in two days worth of activities...that's why. Because I love those days. Sure, you'll find me often in bed by 8 pm on a weekday after working. And sure, I can rarely stay up past 10 pm. But those days when I can engage in activities for hours...those days excite me. Those days are worth it all.

I have another week before my next round of iron infusions and I'm ready for the day to arrive. I'm ready to have energy again on a consistent basis. It's uncertain regarding the frequency for receiving the iron infusions. However, regardless if infusions are required every three months or longer - I'm willing and ready.

Saturday, May 13, 2017

Bullying and Chronic Illness

Living with a chronic illness is an intense stress and burden upon one's self and when it is coupled with resulting medical trauma, it is a recipe for mental health concerns regarding adjustment and coping. When you add a young age and bullying to the mix, it can be disastrous.

I always thought that my morbid death orientation and twisted sense of humor stemmed from the medical trauma I endured as a child. I was partly correct. During my own soul searching, I had an epiphany and realized my obsession with death didn't really exist until I was bullied during my 6th grade year - two years after my first surgery.

I had my first surgery at the end of my 4th grade year. Over the course of a year I would survive 5 surgeries and a near death experience and develop PTSD. Far from the expected two surgeries I was scheduled to have to place a temporary ileostomy and then reverse the ileostomy with a jpouch by the end of the summer break. I was home schooled during my 5th grade year due to my unstable health and frequent hospitalizations. As I prepared for my 6th grade year, I was malnourished and my doctors diagnosed me with relative anorexia. I was placed on a weight gaining diet and began to stabilize physically. As I recall, I was beginning to mentally survive as my PTSD was calming down with the reduction in medical procedures. I was adjusting the best I could to my unexpected ileostomy that was believed to be permanent. However, I was anxious to start back to school, particularly as 6th grade meant middle school - a new level without a transition and I had lost contact with the majority of my grade school friends during my year of absence. I wasn't psychologically ready for this change and I pleaded with my parents for an alternative. My parents opted to transfer me to a different school district that still held 6th grade in the grade school to allow me time to acclimate to returning to public school. In the end, this was a great decision as I would come to enjoy my school district and experience a challenging education with fantastic teachers that would prepare me well for college and a large group of close friends who supported me in my future health issues during my high school years. Unfortunately, this end result would require me to survive a very difficult time first.

My 6th grade year started off well. I was the new kid in school and painfully shy. I had no sense of fashion or style. I wore baggy pants and long, oversized t-shirts frequently to fit my level of comfort with my new body. I was uncomfortable wearing anything that might give away the presence of my ileostomy. I was introduced to a group of girls and was accepted. I managed to make several friends and all was going well.

That is, until winter break ended and I returned to school to find myself shunned by everyone I knew except for two girls - who were not in the circle of girls who orchestrated the shunning. Unfortunately, I didn't have classes with these two girls very often if at all and so I was left to myself the majority of the time. I was bullied relentlessly for the remainder of the school year. The bullying was led by two girls in the previous circle of friends I had enjoyed. I was never given an explanation for why my previous friends had shunned me and told others in our grade to shun me as well. I began to spend my recess in the classroom with my home room teacher as it was lonesome to play by myself outside everyday and one of the girls would often hit me in the head with objects such as hand sized rocks or hard plastic lunch boxes. My days were spent simply trying to survive so that I could return to the safety of my home.

The combination of this bullying with the medical trauma I had experienced within the previous two years was too much for my childhood self. I was no longer able to maintain coping and I became consumed by hate and anger. I was angry at my classmates for bullying me, at my parents for my disease, health, and for giving birth to me, and at my medical providers for my ileostomy and near death experience. I no longer was learning to cope and adjust to a life with an ostomy. My coping mechanisms became an obsession with death - my own death and the death of those I despised. Quite frankly, I became suicidal and homicidal. I prayed for my death and the death of others everyday for hours while fantasizing about our deaths, planning and plotting how I could bring about death. I had opportunities I could have taken to enact my devious plans. And yet, my health saved me and others from myself.

I managed to stay out of trouble during adolescence thanks to my health. My health made me timid in many ways and helped narrow my chances for typical adolescent mischief. I was too often ill or felt inhibited by my health to partake in high risk behaviors or activities. This inhibition coupled with my logical mind kept me from harming myself or others. Not only did I joyfully envision the demise of myself and others - I also envisioned the repercussions of such devious actions. Knowing the likely consequences that would occur if I acted upon my devilish desires kept me from harming anyone.

FAPVoice Bullying
Survey Results
The effects of bullying was far reaching for me that could have resulted in disaster for myself and those around me as well as their loved ones if it wasn't for my own ability to logically think through my thoughts. Unfortunately, this isn't the case for everyone who is bullied. Far too often individuals are completing their suicidal or homicidal desires causing great devastation. In the age of technology, bullying is growing, reaching vast audiences and victims.

FAPVoice launched a survey to determine the prevalence of bullying among their community members. I was heartbroken to read the stories of others' experiences. It's become common to hear about bullying within schools. I didn't expect to hear about bullying within the work place or from medical providers and family though in regards to chronic illness. I was particularly bothered by the story of one individual who felt bullied by her family and medical providers due to her medical decisions.

The sad fact is that we can encounter bullying anywhere and from anyone. But there are things we can do. We can stand up for ourselves and for others. We can reach out, understand, and educate.

Consider joining forces with anti-bullying groups and campaigns, such as No Bullying - a global source for education and support to stop bullying.

Regardless of your age, your place, your role or your avenue. You can make a difference.