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.

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.

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.

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.

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.

Traveling with an Ostomy

Traveling with an ostomy is manageable and even enjoyable but it is faced with risks. There are risks of inconvenience in regards of restrictions when flying, restroom access, and appliance welfare. Recently while traveling to visit my Great Uncle for a week, my mother experienced an intensive week of ostomy issues – specifically, appliance issues.

We decided to fly to arrive to our destination and was as any flying ostomate, she was faced with the typical TSA regulations of traveling with ostomy supplies and restroom restraints. Fortunately, she didn’t encounter any hassle from TSA regarding traveling with her ostomy supplies and wasn’t selected for a body scan or pat down. You may find the UOAA's travel tips for ostomates helpful for additional guidance, particularly when flying.

We were away for a full week and my mother packed enough supplies for 5 days worth. Typically her ostomy appliance wears for 3-4 days per change. With your typical run, 5 days worth of supplies was expected to be plenty. However, fate shouldn't be tempted. When something can go wrong, it seems as though it often will do so. And so was the case for my mother.

Her activity didn't particularly change out of the norm from her usual activities. Rather, her activity lessened if anything. While away she was unable to participate in her regular exercise classes and physical therapy sessions. She bathed normally and used the same products she typically uses during an ostomy appliance change except for one product that she occasionally uses. She even followed the procedure exampled by her ostomy nurse. And yet, her ostomy appliance leaked five days out of the seven days we were away.

We brainstormed about what was being done differently, what needed to be done differently. The only difference were the two days that instead of a regular shower, she took a sponge bath. Nothing that we could think of should have been causing such an excessive increase of appliance leaks. With an ostomy you are meant to be able to participate in activities, even strenuous, physical activities. You are meant to be able to shower daily. You are meant to be able to live in various climate zones.

It was Sunday evening and my mother had two days worth of supplies left and we were scheduled to return home on Tuesday. After four days of consecutive appliance leaks and desperate for a lasting appliance, my mother opted to forgo a regular shower Sunday night and instead take a sponge bath in the morning. Miraculously, she awoke Monday morning without any appliance leak. She had two days worth of supplies remaining, one for each day of the trip remaining if needed. Monday day and night passed without incidence. We thought she was in the clear but remained concerned about what would happen if her appliance leaked while traveling home. There wouldn't be time on the plane to an appliance change and the tight quarters of the lavatory would make a change highly difficult even if timed were allowed. But what should she do if a leak did occur? We brainstormed once again and I suggested she use her medical tape to tape a Ziploc bag onto her skin with the appliance safely tucked away into the Ziploc bag and paper towels wrapped around the appliance itself. This would allow for the appliance to remain contained. If needed, she would be able to cut the bottom of the Ziploc bag and attach a pouch clip to even allow for emptying of the pouch.

Tuesday morning arrived and the night passed without issue once again. All of the appliance leaks had occurred during the night. We successfully completed our first flight of the day with just one more flight remaining after a layover. Once again, we thought we were home clear. Twenty minutes prior to our flight boarding the feared but unexpected occurred. Her ostomy appliance leaked. She headed to a terminal bathroom to hastily adorn her makeshift Ziploc bag appliance container. I watched the clock to check on her progress and update her of the flight status at the 10 minute mark. At 8 minutes, we were called to start boarding the flight. She finished her process and we headed toward the plane. Unsure of the makeshift container, her appliance remained intact for the remainder of the flight and drive home.

In spite of the difficulties, our travel was worth it all. Next time though, my mother will pack more than enough supplies in case of such a rare occurrence again. And perhaps know the local ostomy resources ahead of time.

Hydration via Speedlyte: A Review

Disclaimer: I have been given this product as part of a product review. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

Hydration is an essential key to living well as a living being. However, for those of us whom are missing parts of our intestines, dehydration can be a dangerous game. Without our full intestines, we are easily at risk of dehydration which increases our risks of electrolyte imbalance, cramps, fatigue, lightheadedness, intestinal blockages, and increased stools which worsens dehydration.

Even though I live with a straight pull thru and have Short Bowel Syndrome due to removal of my colon and part of my small intestine, I am not a keen observer of my own hydration status. I drink liquids when I'm thirsty and I tend to drink a fair amount of coffee and tea, which both further dehydration due to their caffeine content. I don't typically experience overly bothersome effects of dehydration. I'm not prone to intestinal blockages or cramps and my electrolytes have been remaining stable during blood lab checks.

My mother, who has an ileostomy and Short Bowel Syndrome, suffers with dehydration on a daily basis. In addition, she has Diabetes and Restless Leg Syndrome. With her combination of medical conditions, she experiences electrolyte imbalances that cause severe daily leg cramps that are so painful she is brought to tears on a regular basis and experiences partial intestinal blockages on an almost weekly basis.

So when I was contacted by Einsof BioHealth regarding a hydration product, I immediately thought of my mother's frequent dehydration. I have been given this product as part of a product review. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

I received Speedlyte, a product for Pediatric and Hypotonic Dehydration. When I approached my mother about using Speedlyte to improve her leg cramps, she was interested and sought the medical approval of her doctors. My mother was diagnosed with abnormal kidney function and must be mindful of the products or medications she utilizes. Her Gastroenterologist and Nephrologist both approved her use of Speedlyte to boost her hydration.

Speedlyte was designed to increase absorption up to three times faster thereby requiring less volume of liquid than other products by utilizing an Encapsulated Nano-Electrolytes formula. This means the transportation of electrolytes into the cells is more efficient and allows for rapid rehydration. With this different formula, Speedlyte can be absorbed in spite of a reduction in villus cells as a result of diarrhea. According to Speedlyte data, this new formula has been shown to reduce unscheduled intravenous rehydration therapy by up to 19% and reduce scheduled intravenous rehydration therapy by up to 73%.

Speedlyte comes in an orange flavor and is relatively low cost for a 20 ounce bottle through Amazon.
It is also made without any artificial flavors, colors, or sweetners and contains a low amount of sugar. This is important as sugar and artificial sweetners increase diarrhea and sugar content must be monitored for those with Diabetes, such as my mother. My mother was approved by her Nephrologist to drink two bottles a day. However, due to the size of bottles my mother opted to drink one per day. She drank a bottle throughout the day rather than in one setting. She was not fond of the orange flavor but did report it tasted better when it was chilled. I, however, did not mind the orange flavor and found it to more appealing than other orange hydration products. I was advised by a Speedlyte representative that the orange flavor is being improved and additional flavors are being developed for future release.

My mother often experiences worsened leg cramps in the evening and during the night after she exercises during the day. She found by drinking Speedlyte through the day she no longer experienced leg cramps in the evenings or during the night. After exercising during the day, she would begin to experience the beginnings of a leg cramp in the evenings. However, upon drinking Speedlyte at the onset of a leg cramp she was able to curtail the leg cramp from developing within 20 - 30 minutes of ingestion and the symptoms dissipated. This allowed her sleep to improve significantly as she wasn't waking up with cramps and required to "walk them out".

Overall, my mother was satisfied with the reduction in her dehydration symptoms while utilizing Speedlyte and found it to be a "good product". Also, as an added benefit the representative advised me that some Medicare beneficiaries are able to receive Speedlyte through their Medicare benefits for a monthly supply.

If you're interested in learning more about Speedlyte or trying this product for yourself, you can find more information at Einsof Biohealth and purchase through Amazon.

The Journey of Chronic Illness

Jour·ney

ˈjərnē/

noun

noun: journey; plural noun: journeys

an act of traveling from one place to another.

"she went on a long journey"

synonyms:

trip, expedition, excursion, tour, trek, voyage, junket, jaunt

Imagine yourself disembarking on an adventure exploring a vast land with only your mode of transportation and a map. This map can take you anywhere amongst this land. Whichever way you choose to go will determine what you encounter along the way. Each way you turn will vary in the experiences and people you encounter. Some ways will be similar while others will be substantially different in comparison. Individuals may join you and leave you at various points. Your experience along the paths you choose differ from those of others according to their chosen paths. No adventure will be exactly the same. There are too many variables leaving each traveler with a unique experience, a unique reality.

Life is a winding road of never ending experiences and adventures. The synonyms of journey truly fit the uncertainty of life. You never know what life has in store for you, what will come to be with each decision you make in life.

And so it is with chronic illness as it is with life in general. We never know from day to day if our chronic illness will change. If we will experience new symptoms or a reduction in symptoms. We enjoy our plateaus of good health while they last but these plateaus are never guaranteed. Change is the nature of chronic illness. The doctors we see, the hospitals we attend, the medications we take, the foods we eat all play a role in our chronic illness life. Each may be a positive or harmful decision for us that has the power to drastically change the development of our chronic illness. Unfortunately, like life, we don't have the foreseeing power to know what the best decision is for our chronic illness. Instead, we must make the best decision based on the knowledge we have and the circumstance we are faced with at the time. And we hope for the best.

Others disagree with using the word "journey" to describe living with a chronic illness. I, however, embrace this term for my chronic illness life. My life and my chronic illness are not mutually exclusive. For there to be one, there must be the other in my life. It is a fully inclusive circle. This isn't my preference but it is the way it is and so I will embrace this journey.

Just as we trek through life that is full of surprises - good and bad - so we trek through the journey of chronic illness. I have been overwhelmed by my encounters with others I never would have crossed paths with - physically or virtually - if it hadn't been for my chronic illness. I have made lifelong friendships with many individuals on their own chronic illness journey. I have held very dear friendships that played important roles at key moments in my life. I have been blessed with some outstanding doctors who help me along my journey. I have also been cursed with some very devastating moments throughout my chronic illness but with the support of family, friends, and medical providers I have survived those dark moments and am flourishing along a good path at present.

We all enjoy the smooth, easy paths on our voyage through chronic illness. However, we wouldn't be able to fully appreciate the beautiful tours of life if it weren't for the dark, trying passages. When we cross the bridge from the dark into the pristine, we are able to enjoy the ease with a new understanding, a new gratitude. Our eyes are reopened to the greatness of life and so we experience life with renewed senses. Unfortunately, we wouldn't experience these fulfilling moments to the same degree if we didn't trek through the difficult paths of life. And so these experiences go hand in hand to make the experience that is life complete.

Throwing Out New Year's Resolutions

I'm just going to say it, I think New Year's resolutions are a bit silly. Sure, I've made my own resolutions for the new year in the past. They were usually for some type of betterment of myself. Some new, improved version of myself. A healthier, skinnier, this or that better me. And like the majority of people, I didn't keep my resolutions. And then I asked myself "Why am I waiting for the new year to start accomplishing my goals? Why not start now? Why do I need a holiday to do something for me?"

So I threw them out and I started doing things for me in the now, not for some day. This was particularly true as I found my own strength and freedom after my marital separation and divorce. I promised myself to do more things for me and I made a list of what I wanted for myself. And so far, I've kept those promises to myself. I didn't wait around for a few months to pass for the new year to come around. No, I made a change that day and with the first opportunity that came along for me to act on my promise, I did. I want to stretch my wings and experience the life that I want without fear that I won't have someone to share those experiences, those adventures with along the way. I'm determined to enjoy and experience life regardless who is by my side or rather, who isn't by my side. This is my life goal and it isn't waiting around for a particular day. It's happening now and I best be on board or I'll miss out.

We don't need some day. We need now. Life is too short and too complicated, particularly when chronic illness is involved. We never know what tomorrow will hold. The days change from one way to another in a moment's instance with our health challenges. When we have the moment, let's grab it. Let's not wait around for the next moment.

Since I stopped waiting for the next moment to come along I feel more alive, more content. That's what I want for all who I cross paths with along my life's journey. I want to feel the thrill of life pulsing through my veins. I want us to enjoy the ride together with no one on the sidelines waiting.

What's your life's ambitions? What do you want out of your life? This isn't a resolution, this is a life change. It's more important than a once a year resolution, this is for a lifetime. With something this large, it can require soul searching to discover our heart's desires to determine what really makes us happy and excited about life. Once we make this discovery we can start to establish our game plan for achieving what we want out of life. Every game plan gains momentum when we start with small, achievable steps that lead us to our ultimate goal. Let's make a plan and go for it. Get out there and enjoy life for all its magical ups and downs, twists and turns.

My Death is Acceptable

I'm comfortable with death. Anyone who knows me will hear me casually talk about death, particularly my own. It happens. I think it would be astounding if we were all accepting of death. It's natural and we are all going to make that passage at some point so why not accept the inevitable. Why stress about our own future deaths when we can enjoy life now and rest in the peace of the future?

I've faced my own death when I was a child and a teenager. In grade school, due to the negligence of ER staff it was missed that I was experiencing a life threatening blockage. Instead, I was dismissed as a whiny child and sent home with pain medications. The following day my parents returned me to the ER and this time the ER staff completed more thorough testing to discover my small intestine was wrapped around itself and surrounding organs. As a result of the delay in treatment, part of my small intestine - including my jpouch- died and my doctors deemed it a miracle that I had survived.

In high school, after my straight pull thru surgery I had so many adhesions from my previous surgeries that a stricture was created around my small intestine. I was constantly barraged by vomiting and excessive diarrhea. To the point that my body couldn't maintain. I was going to the doctor every week for regular lab monitoring resulting in frequent hospitalizations to try to stabilize my out of control electrolytes. The reality was that I was slowly dying. My doctor later told me that she never knew if she would see me at my next weekly appointment, if I would live from week to week.

I recall one morning, the sunlight hitting me on the couch where I spent most of my time as I was too weak to climb the stairs to my room. I remember surrendering to a sense of peace and serenity that I've never experienced before or again since. I sensed death yet it was so serene, it was lovely. I felt safe amidst my world of unknown and uncertainty. And then I was overcome with a sudden urgency to share my goodbyes with my mother. My mother laid my head upon her lap and stroked my hair as I gazed up at her and told her my goodbyes. Her eyes welled with tears as she listened. I was ready. I was at peace. Within the next day or so, I was back in the hospital once again. My doctor told me I was at risk of a heart attack or brain seizure at any moment.

If it wasn't for the unimaginable sense of peace I experienced that morning, I might still be scared of my own death. But instead, it left me in awe to embrace my own mortality. When my time comes, I'm ready. If I don't meet all the goals I have set forth in time, that's okay. I will live without regrets. I do, however, have a preference for my expiration date. I'd like to walk on by the age of 40, for my own personal reasons.

And so it's hard me for to understand the fear others hold about death. I particularly have an extremely difficult time understanding why others are so uncomfortable with my acceptance of my own death. In fact, when others repeatedly question my own acceptance it begins to infuriate me. Do we question that another is scared of their death when that person states so? No. Then why would we question someone who states they accept their own mortality?

To be honest, if I were to develop cancer that required chemotherapy for survival...I'm not sure I would elect to undergo chemotherapy. I'm very tempted to simply let the cancer run its course. It's not a wish for death or a means for suicide. I'm just simply comfortable with death and quite frankly I have an intense fear of outliving my parents. My preference is to not outlive my parents and yet my parents are one of my main priorities in my life. I feel as though my life purpose is to remain as independent as possible so that I may meet my life needs and those of my parents. Therefore, I'm conflicted about accepting such an opportunity should it arise - torn between my preference and my sense of duty to remain living in order to provide any future caregiving needs my parents my require.

I've been embraced by the warmth of death and so regardless if my time comes sooner or later, I will accept and welcome my transition into the after world. The present world will have its frightening moments that challenge us. However, we need not feel frightened or challenged by our own mortality. May we all rest in the peace that is waiting for us when our time nears.

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.

Chronically Dating

I had left behind the dating world for nearly 7 years and I thought I was leaving it behind permanently. However, after my marital separation and divorce I found myself once again dating. I was suddenly thrust back into situations calling for me to decide when, what, and with whom to share the details of my chronic illness.

I previously shared how I've chosen to disclose my health and particularly my past with an ostomy. I am much more confident in my disclosures than I once was when I was younger. I'm now comfortable with someone not accepting me because of my health. I've learned that if another can't accept my health, then I don't need that person in my life. In fact, events of the last year have lent to my improved ability of letting go in general.

Dating after divorce with a chronic illness has been interesting to say the least. I've become increasingly open about the details of my health and illness with suitors and I've been met with overflowing acceptance. I've always been accepted by those I've shared my health with previously, however, this time around the dating world has been filled with even more acceptance. Perhaps dating in my 30s is part of the difference as we tend to view the world, ourselves, and others in a different light than we did in our younger years. This may also explain the differences in reactions I've experienced since re-entering singledom.

Although I've been accepted by each partner, there were some very different reactions. My suitors ranged from "I'm ready to take care of you in whatever fashion required" to "I can't lose you early on in your life". While one suitor was eagerly ready to spend whatever amount of time my life holds for me caring for me and my health needs another suitor was so concerned about losing me early in life due to the likelihood of cancer that he wasn't sure he would be able to handle a romantic life with such a very real expiration date.

I was shocked to actually encounter someone who was so concerned about being able to handle the real possibility of my own death at a relatively young age. I am accustomed to death, particularly the threat of my own that sometimes I forget what others may feel or experience in relation to my own mortality. I also wondered if this person would be the individual those of us with chronic illness all dread: the person who leaves because of their own inability to handle life with chronic illness.

I'm not sure how we guard ourselves against such individuals as I haven't truly been in such a situation. Guarding our hearts is a wise move to a certain degree. At some point, we either must trust our partner or we must let go. The degree to which we scrutinize our potential life partners varies from person to person and experience to experience. I can only urge others to be aware of their own comfort levels and move within those boundaries. We aren't required to move past those boundaries until we are ready, whatever those boundaries may be. Dating isn't always the easiest lifestyle and chronic illness can complicate dating life. However, I view loving yourself first and finding your own happiness as a fundamental key to tackling life, including the dating world. We don't need to seek love and acceptance from others when we find love and acceptance from within ourselves. Once we have conquered this feat, any love and additional acceptance from others becomes a shared joy rather than a request for validation and esteem that we have yet to afford ourselves.

I found part of accepting my life and in particular my divorce was to also accept the possibility of spending the remainder of my life alone. With marriage, I had a lifetime caregiver if needed. With divorce, I gave up that lifetime caregiver for a life of uncertainty on my own terms. I don't know what the future holds, but I've accepted the unknown. I do know that no matter what is in store for me, I create my own happiness and I can survive. The dating world is no different - we hold within ourselves the power for happiness and survival.

A Surreal Life

A year ago my life was very different than from what it has become, it is drastically different from 2 years ago. I never would have imagined that I'd be where I am at now in my life. I foresaw my life being very different in 2016 than what it presently is. And yet I'm full of gratitude and amazement as I struggle to believe my present life is reality.

To fill you in, a lot has transpired in the last 24 months:

• I decided not to have any children because of my health and FAP 
• My husband was diagnosed and hospitalized with diabetes
• My marriage began to fall apart
• I entered a bout of extremely severe depression
• I was hospitalized for the first time in 8 years
• I developed increased chronic pain and started having chronic nausea
• I went on a dream family vacation to Alaska (highly recommended by the way)
• One of my very beloved great uncles died at 99 years old
• Estrangement from some very dear friends and family members
• Marital separation
• Moved back home to my parents
• Divorced
• Bought a house
• Became independent once again

Not everything that has happened in the last 2 years has been a hardship. In spite of very difficult, trying situations throughout the last 2 years every situation has held life lessons for me and has helped me grow as an individual.

I psychologically surivived situations I never imagined I would face and wasn't sure I would survive at the time of their occurrence. And yet, with each hurdle I became stronger and fiercer. I never saw myself as a survivor or as a brave person before in spite of surviving 7 surgeries, near death experiences, and the cancer that was developing in my body. I've lived through PTSD, suicidal ideation, and severe depression. I've survived the physical and emotional loss of many. I survived. I learned I am strong and after I've faced physical and psychological torments, I can survive anything.

It's true that we don't realize how strong we are until we have no other choice. Feeling on the verge of a mental breakdown for months on end last year, my mind somehow held onto the smallest amounts of hope and strength to keep me alive to fight another day. And now, I'm stronger than ever before. Now, I'm prepared to fight whatever future fights may be in store for me. I know I've survived the worst psychological torments I've ever encountered and it's only up from here. Even my bad days are not my worst days because those are behind me.

I've harnessed my inner strength that for far too long I didn't know existed. It's easy to ignore our inner strength. We tend to minimize our feats of mental strength. We become accustomed to survival mode without acknowledgement of what it actually takes to survive. We get caught up in surviving day to day without relishing in the fact that we are surviving. Let us stop cheating ourselves. Let us honor our strength and harness it. When we bear witness to our strength we honor ourselves, our survival, and our life. We begin to free ourselves of the draining mental fight by power housing our strength. Thereby allowing increased utilization for continued survival and breaking free of our mental chains. And after the fight, we will realize that we deserve to be free.

Fresh Assist: A Review

Disclaimer: I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

As an individual with chronic GI issues due to Short Bowel Syndrome (SBS), I'm always excited for anything that can help reduce the side effects of SBS. SBS causes frequent diarrhea that in turn can cause raw skin, itching, burning, and painful sensations. It's common for individuals with SBS to utilize products such as flushable toilet wipes and creams to aid in hygiene and soothing the bothersome effects of SBS.

So when I was asked to review a similar product, I was happy to do so. 

I received Fresh Assist Spray, which reinvents the flushable toilet wipe by making available a conveniently sized, 2 ounce portable spray bottle with a solution to be sprayed on toilet paper prior to use after a bowel movement. I used the recommended spray amount with each use and found the solution to be a comfortable room temperature. I like using a spray bottle as one can spray the solution at their own discretion. This is not an option with conventional flushable toilet wipes, which can be too wet and cold. An additional benefit over wipes is the spray also reduces the amount of waste flushed with each bathroom use thereby being an easy, eco-friendly option.

Fresh Assist Spray comes in two fragrances: Soothing Lavender and Cooling Chamomile. I received Cooling Chamomile and was content with the subtle fragrance that was balanced well. Some products are too heavily scented leaving the user with a noticeable odor. This, however, was not the case with the spray. I was concerned about using a fragranced product on my sensitive skin but was pleasantly surprised that the scented product didn't cause any burning sensations on my already sensitive, at times raw skin. To my surprise, the solution didn't cause any burning or stinging sensations during any of the times of use no matter the condition of my skin.

I found Fresh Assist Spray to only require the recommended 2-3 sprays and that it effectively improved cleaning in a single wipe. I use a skin protectant cream regularly to combat raw skin from the effects of SBS and found the spray to cut through the cream without difficulty. The solution provided a cool, soothing sensation that reduced itch and soreness. I found the soothing effects of this spray to become addictive as using toilet paper without any spray was immediately uncomfortable and rougher feeling than with the spray. I used this spray with a 2-ply soft tissue which proved to absorb but not become disintegrated by the solution. I would caution using this spray with a 1-ply toilet paper as the tissue would not likely hold up to being sprayed. However, I did not experiment with 1-ply toilet paper so I can not fully speak to the integrity of 1-ply toilet paper with use of this spray.

Although I am heavily dependent on the use of a skin protectant cream with each bowel movement, the effectiveness of Fresh Assist Spray left me being able to reduce use of the skin protectant cream after every bathroom trip. I didn't feel comfortable discontinuing use of the skin protectant cream altogether but I was able to reduce using the cream to after every 2-3 bathroom trips. Based on this, with regular use it is possible that this spray could aid in healing raw skin to the point that protectant creams are no longer required.

Based on my experience with Fresh Assist Spray, I would highly recommend use of this spray for anyone. It is particularly useful for individual with GI issues that cause painful skin conditions from frequent bowel movements. The spray bottles come in a reasonably priced single or two pack and lasts a relatively long time even with 3 sprays a use. 

Standing Together

Today was a physically taxing day. I woke up not feeling my best and it worsened as the day drew on. I ended leaving work early due to stomach pain and bloating. As soon as I returned home, I crawled into bed to rest. I was worried about feeling better in a few hours. After all, I had to prepare for an evening interview with Lee Silverstein, The Colon Cancer Podcast.

It's amazing how much rest the body can gain from simply lying in bed for a couple of hours. My body knows that once it's lying down that it doesn't have to work hard or stress. My mind can relax with my body and together they can begin to mend themselves. And it worked; although I don't feel like completing projects this evening, I am left feeling energized with adrenaline and hope for the future.

I must give credit for the rejuvenating energy to my conversation with Lee though. Sometimes it's hard for me to speak with others. I often find myself emotionally drained after visiting with others. Perhaps that is more to do with my line of work as a medical social worker. Sometimes talking is the last thing I want to do after a long work day of focusing on and assisting others with their life issues. But after conversations such as tonight's conversation with Lee, I'm reminded just how much we need others in our lives. Support, whether it is online or in person, is an integral part to life and for our well-being.

The internet has become alive with multiple support resources for every issue imaginable. I'm amazed by how tangible support is now than what it was even just 10 years ago. With a rare disease, I didn't know anyone outside of my family for years with Familial Polyposis. And now there are social media groups and websites solely devoted to Familial Polyposis. And the case is the same for countless other rare diseases.

As wonderful as these online support resources are, we mustn't forget how important in person support remains. It's easy to take the easy way of communicating digitally with others through text and online messaging services but there still remains nothing quite like in person visitation. In person visitation forces us to reduce our isolation that we often succumb to with chronic illness due to how debilitating our health symptoms can become. In person we can give and receive physical support - hugs, shared tears, even household assistance.

In person visitation can be physically stressful as it forces activity upon us yet I'm always glad I forced myself to leave the house or prepare for a visitor afterwards. It reminds me of the importance of friendships. Not everyone we talk to has to have chronic illness so let us not abandon our other friends.

If you're isolating yourself because of your health, you can break through the isolation. Remember, isolation can lead us to depression and can worsen already existing depression. Depression will tell us not to interact with others and by engaging in activity we loosen the bonds of depression. However, I understand how daunting activity and socialization can be, especially under the stress of depression. Because of this, I start with a small, achievable goal as this reduces the feeling of being overwhelmed and with each small step, the next becomes easier.

We all need support, no matter who we are or what we're facing. Reach out when in need and reach out to another during their difficult times. Socialization is a wonderfully rewarding gift we can give each other.

Remember the Worst

I've been through worse. I've survived worse. 

I can survive this too.

I chant to myself, reminding myself, preparing myself.

I underwent a biopsy of a section of my last stoma site, now a scar, that never healed. It would become irritated and blister, a painful blister until it was made to burst. This cycle would continue on a weekly basis for 15 years until I decided to address it with a doctor. Although believed to be benign, the doctor wanted to complete a biopsy just to be safe while removing the sore simultaneously.

I dreaded the procedure. Actually, I dreaded the lidocaine shot. Not only can it burn but the level of pain would depend upon where the needle was placed - something I was afraid to ask about beforehand. My anxiety built and as the needle was placed inside the sore twice, I couldn't help but scream in pain before bursting into tears. The rest of the procedure was completed without incidence. And now, I'm left with the irritating pain that remains after the lidocaine has worn off.

I've survived worse than a shot in a sore on my scar. I've survived being sliced open without anesthesia, my intestine twisted around itself and surrounding organs, insertion of ng and rectal tubes, and the Essure procedure. And yet, in that moment those past survival achievements mean nothing. They don't help reduce my pain in the moment.

So how are these achievements helpful at all?

Remembering the worst helps in our mental preparations for what's to come next.

We survived worse so we can survive less.

If you're like me, mental preparation is a requirement for most medical procedures. Even lab draws require some mental preparation on my part. I have to coax myself into the right state of mind, inducing a bit of calmness into my highly anxious and fearful mind. I anticipate the pain before the pain begins and if I allow myself, I'll physically feel that pain without any actual physical prompting.

At times I require more than coaxing but also convincing of myself to go through with a procedure.

When asked if I would still have gone through this recent biopsy if I had realized the level of pain I would experience, I wasn't sure how to answer. I'm not sure if it would be worth it to me to go through this again. After all, the blistering sore was more of a nuisance than anything. It was never infected and posed no danger, just a reoccurring irritation of fluid build up. Now as the pain begins to subside with healing, I'm glad I had it done but would I really go through it again? I'm not sure I would. I like to avoid pain when I can. And it honestly hurt more than I first thought it would when I decided to have the sore removed. It was only during the approaching time to the biopsy that I started to fear and imagine what the pain level would be. Not only was it just a nuisance than any real issue, but as I wait for my new incision to heal I'm increasingly paranoid about the section of skin that was stitched to the incision section. This junction caused a new bump, very similar to the unhealing sore I just had removed. I worry that this will just create another unhealing sore or worse - a bump that will be more irritated than what was there before. Now I'm overanxious for the removal of the stitches to be removed so I'll be able to find out what this new scar will become. Would I go through this again to fix a new problem? Not likely. I would, however, regret my initial decision if my fears are confirmed about this possible new irritated sore spot.
I debated the idea of receiving iron infusions simply because it involved an IV. I desperately wanted my hemoglobin to reach a normal level - I was so exhausted I was ready for an IV. But after that first round, would I really want to continue with the infusions? So far, I'm willing to undergo the infusions in an effort to obtain a stabilized hemoglobin. And now I'm anxious to discover how the combination of infusions and ferrous gluconate (instead of ferrous sulfate) will affect the stability of my hemoglobin. And honestly, the first infusion of a round is the worse. After going back to receive an IV after several months without any it causes the anticipation to build, increasing the fear of the dreaded IV. Yet, the second infusion of the round is by far easier than the first. I survived the first one, I can survive the second one. There's less time for anticipation and fear to build between the first and second.

Regardless the various reasons we may hold onto remembering the worst, it remains to be helpful as we prepare ourselves for another medical battle - small or large. It reminds us of our strength and resiliency. Without these two characteristics, we become hard pressed for taking to the battle again. With these two characteristics though, we are fierce and unrelenting even we don't realize it. So stay strong, don't shy away from what you've survived. It will help you fight another day.