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.

Thursday, May 4, 2017

Intestinal Blockages

It could have started due to various causes. There are too many variables affecting my daily physical well-being. I can rarely pinpoint one cause for anything. It's most likely a combination of actions or it may just be random luck. It's not always easy to pinpoint the root cause of a flare up or an intestinal blockage.

Due to a combination of iron tablets and regular iron infusions, I'm finding myself with increased energy on the weekends. This was a prime weekend for activity. I had energy for a weekend full of activities. Perhaps I pushed myself too hard two days in a row.

Saturday I wanted to attend a local festival so in preparation for walking and possibly limited restroom access, I took one Lomotil tablet in the morning to slow my Short Bowel Syndrome. Normally, I have about 20 bowel movements a day thanks to my Short Bowel. This can be problematic when faced with physical activity and limited restroom access.

I hate taking any anti-diarrhea medications. The crazy thing is, I used to take the max doses allowed of Lomotil in an effort to slow my bowel for daily functioning. Now, one Lomotil tablet leaves me in pain and disrupts my normal bowel function which has its own negative side effects. However, I am able to participate in activities with less worry about restroom access. The slow down action of Lomotil has become so severe for myself that I can accidentally induce an intestinal blockage simply by taking one Lomotil tablet two days in a row.

Saturday evening started off with my Short Bowel Syndrome emptying itself as much as possible once the Lomotil started to wear off. My bowel was making up for only requiring very few restroom trips during the day. Additionally, the slowed bowel agitated my intestinal ulcers resulting in extreme blood loss for about 6 hours. I felt alright though. I had made it through the life span of the Lomotil and my bowel was returning to its normal routine.

I woke up Sunday fairly normal except my bowel was a bit angry still at me leading me to not feel comfortable leaving the house unless required. Fortunately, I was able to stay home until my bowel calmed down. The morning transitioned into a pretty bowel typical day for me. In the evening, I decided to snack on pickling cucumbers. As I finished my second small cucumber and reached for the third one, I remembered the time I gave myself an intestinal blockage by eating crab salad made with a whole English cucumber. A whole English cucumber is too much for my intestine to handle. Before this occurrence, I never had an intestinal blockage caused by food. Not once. So I rationalized that pickling cucumbers are smaller and I've eaten two in combination with tomatoes, onions, and olive oil without any issue. So one more wouldn't hurt anything.

Monday started with uncomfortable bloating and limited bowel movements (for me...remember I'm used to 20 times a day) but a lot of my mornings start this way and improve as the day goes on. So I ignored it; just another day. I drank some coffee and ate a snack and lunch and my symptoms seemed to start to improve. But then my day drastically changed. Suddenly I found myself having a flare up. I was running to the restroom every 5 minutes - literally - and started having painful abdominal cramping. This went on for hours, I was excited when I was able to wait 20 minutes in between restroom trips. I took the 20 minute interval for granted and it returned to the 5 minute intervals. If I can just sleep, this will clear up by the morning I think to myself as I draw on past flare ups.

I managed to finally sleep for a few hours and I awoke to a severely distended
abdomen and
excruciating cramps. Now my bowel movements had gone from 5 minute intervals to barely any. Somehow, I went from flare symptoms to blockage symptoms over night. I tried drinking hot tea, eating soup, using a heating pad, lying down rather than sitting up. Nothing was making a difference. With hope, I took the max dose of milk of magnesium laxative to help out. Normally, if I take a laxative I have flare symptoms but it does help flush out my intestine and stop the abdominal cramps and bloating. The laxative did nothing this time. I knew I was getting into trouble but I still refused to accept that I was having an intestinal blockage and I refused my parents' suggestions of going to the ER. In desperation, I stopped trying to keep my food and drink down. I allowed myself to vomit until I couldn't vomit anymore. The pain and bloating improved but was still present. My mother convinced me to take a Lortab for the pain so that I could sleep. As the night progressed, the symptoms began to lessen. I started to have more typical for me bowel movements. I clung to the hope that this blockage was finally clearing or I would be forced to visit the hospital the next day.

Fortunately, the combination of vomiting and a Lortab did the trick this time and the blockage progressively cleared itself over the course of the third day. I was lucky this time.

I replayed my actions taken over the weekend. Was this caused by a combination of factors? Did I start into action a blockage when I took the Lomotil and then cemented it into place by eating too many cucumbers? Was I having a flare at all or was it just the early signs of a blockage?

With Short Bowel, there isn't always a definite cause for how my bowel will act on any particular day. But I need to be mindful of the choices I make to help protect my physical well-being. I need to pay heed to my body's triggers. I've learned that I need to be careful about how many Lomotil tablets I take and my body is starting to require more attention to food limits. With chronic illness, we are faced with periods of change requiring us to adapt to yet, another change in our health and how our bodies respond to daily life.

Friday, April 7, 2017

Awaiting Results

The year 2015 ended my 8 year streak of being free of cancer screenings and hospitalizations. During an unexpected hospitalization for dehydration, I finally consented to undergoing scopes again to screen for cancerous polyps in my GI tract. I had previously refused scopes after my last one in 2007 due to the harsh prep my GI doctor required prior to each scope. Psychologically, I couldn't endure the pain that accompanied the prep and preferred to take my risk with cancer than undergo the psychological torment any further. However, I relented with a new doctor who didn't require a prep for a scope due to my short bowel syndrome. In 2015, it was discovered that I had developed stomach polyps in the 8 year span without scopes and I had 4 deep ulcers at my straight pull thru connection site.

I thought I would begin undergoing yearly scopes once again with this new doctor. However, in 2016 my doctor advised me that FAP guidelines had changed to recommending scopes every two years rather than yearly. I wasn't one to argue. After all, I had gone 8 years without scopes. I wasn't too worried about one more year. This doctor also advised me that FAP polyps only develop in the colon, rectum, and duodenal area - no where else in the GI tract. I question this as I've read and my first doctor advised me that FAP polyps can develop anywhere in the GI tract. My first doctor even anticipated I would develop stomach cancer by the age of 30. Fortunately, the stomach polyps discovered were benign and non-FAP.

I started 2017 off with yet another doctor and just completed this year's scope with my new GI doctor. He entered my recovery period and advised me that I still had small stomach polyps, a superficial ulcer at my connection site, and a new polyp on my ampulla. Biopsies were taken of the new polyp and the ulcer and I'll receive my results within a week. The news of this new polyp shot through my body. I wasn't able to keep my first thought locked within my mind as I blurted out "I'm not going to do chemo".

I realize there's a chance that this ampulla polyp isn't even a FAP polyp. I realize there's no sense in worrying while awaiting for the biopsy results. Stressing and worrying will not change the results nor will serve any beneficial purpose. Yet I can't forget that my understanding from my doctors and the experiences of fellow FAPers is that this area is the second area most likely to develop cancer after the colon. Based on this knowledge, I'm led to anticipate that this is indeed a FAP polyp.

So what if it is a FAP polyp? It's already been removed for biopsy. But what next? How soon will more develop? I feel as though I'm simply waiting for the other shoe to drop. In all likelihood, I will develop more pre-cancerous or cancerous FAP polyps in my lifetime. In all likelihood, I will develop cancer again in my lifetime. So why can't this be this time? Why can't this likely possibility simply occur now rather than later. Why am I always waiting for the inevitable? Can't it simply occur and be over with. I'm tired of waiting. If I'm going to develop cancer, let it be now. Not later.

And so I wait.
I wait to hear my biopsy results.
I wait to hear about what my future may hold for me.