Caregiving for Mom - The Last Years

Jenny, Mama, and Daddy

The conceptions we create of our parents over time as we grow from children to adults can be quite interesting to say the least. We come to learn new details about our parents that challenge those long held perspectives we've built, leading us to see our parents in a brand-new light.

This has been my experience with my mother and my understanding of her has a strong patient advocate. I grew up not only believing but knowing my mother to be a fierce advocate for me. I learned how to be a patient advocate for myself and others by mom's example, seeing how hard she advocated for me over the years into my adulthood even. Naturally, I presumed that my mom was just as strong of an advocate for herself as she always had been for me. And perhaps she always was. I know she was with insurance companies a fierce advocate for all three of us. But outside of the home, I wasn't there to witness her self-advocacy most of the time.

I started this article months before we lost my mom. When I re-read it to try to finish it soon after losing mom, I felt like I had been so unfair to mom about her level of self-advocacy. The day before she was hospitalized, I had even told mom, "I wish you took your health serious" in frustration when mom and dad told me that neither one of them had yet to call her Urologist two weeks after her ER trip for UTI. Mom replied "Whatever" in disgust. That's all the energy she had to spend on it. I apologized to her the next day when I saw her. She told me it was okay. I'm so glad I made sure to apologize to her.

In spite of mom's multiple health conditions that caused pain and limited her absorption, she was holding her own remarkably well until 2023 when her symptoms appeared to be out of control to me - her blood sugars wildly high with extreme lows, her mental capacity affected by relentless fatigue, ongoing urinary infections, and chronic pain. As an adult, I never shied away from sharing my medical knowledge with my mom for helping her to receive the best medical care and resources available. But I didn't interfere or assist with her medical care until 2023. I didn't know she actually needed me to but as I began to discover the magnitude of her worsening symptoms, the more I realized my conception of my mom as a strong patient advocate in a large part seemed to only be applied to her advocacy regarding my care - she wasn't using her advocacy skills for herself, and she had all kinds of understandable reasons to why that was. What I discovered through it all, was I don't think mom knew the right questions to ask and she became so overwhelmed with multiple medical appointments every week and her body was becoming increasingly tired, weak, and painful that the frustration of it all led to a bit of indifference at times that I don't think necessarily was there in years prior. 

We agreed that I'd take an active role in her medical care going forward, acting as her liaison between her and her doctors, assisting with arranging care and going to appointments with her as needed. By the one-year mark of my active role in her caregiving, she was in a lot of ways in a better place physically than she was before I took over her care. I still grapple though with trying to understand how my mom allowed herself to get into some of the situations I found her to be in because she didn't advocate for herself when she fiercely, unashamedly advocated for me even when I hadn't asked her to and especially when I told her not to, and she still did. 

With my assistance, we changed some of her providers to ones I trust. I have a long-held mistrust of medical providers on the count of my medical trauma as a child, so when I trust a provider, it means a lot. This included changing her Rheumatologist and Endocrinologist. Over the last year of her life, she was diagnosed with Rheumatoid Arthritis and was in the process of being scheduled for an infusion to reduce her high inflammation markers. She continued to have chronic urinary infections that her Nephrologist believed resulted in a bacteria colonization of her bladder and had become drug resistant. In addition to the Nephrologist, she was also followed by a Urologist who aided with managing her urinary infections. We were receiving the guidance of a Diabetic Registered Dietitian who worked in conjunction with her new Endocrinologist for her Diabetes. She also was receiving treatments from a nerve renewal clinic for her Neuropathy that had improved her mobility and balance. 

I'm fortunate that dad remains in pretty good health and together, we were able to coordinate care for mom. As someone with a multitude of chronic health conditions myself, I honestly don't know how others manage their own health and that of their loved one without help especially if the caregiver is still working. I know it was a lot at times even for dad to leave the house to run errands or complete other necessary business due to fear of leaving mom alone. A fear that was understandable and dependent upon not just the day but the hour. It worked well for us that dad was able to attend and take her to her appointments and I focused more on the communication with providers and coordinating care as I have a deeper understanding of the behind the scenes and medical details. This knowledge, sometimes an annoyance to my parents, helped them better understand the gravity at times that mom was facing and led me to have some quite frank, heart to heart conversations with my parents. 

Understandably, mom became tired of having so many doctors to see and taking so many medications. She had quite a lot more to cope with than myself. Yet, at times I struggled with her resistance when she told me she didn't want to pursue an evaluation or treatment because she didn't want to have another appointment or another medication or nutritional supplement. I struggled with my patience and empathy at these times as I was transported back in time to my high school years when I wasn't given a choice and in efforts to quite literally keep me alive, I was forced to endure repeatedly painful procedures and follow strict, absolutely dreadful protocols. Mom struggled with a poor appetite and unintentional weight loss from her malabsorption issues from multiple disorders (and as I feared, also Failure to Thrive). I often wanted to scream "I'm just trying to keep you alive!". The nutritional supplement options from 20+ years ago are significantly better in not only options available but also in taste. As a teenager I was forced to ingest foods that made me gag from the taste and odor of them but nowadays, there are protein bars that taste just like candy bars and protein drinks that taste like milkshakes. 

It was in these moments that I had to pause. Patients often feel smothered, controlled, and burdensome in regard to their caregivers and caregivers often feel overwhelmed and consumed by their concern for their loved ones. These feelings though are frequently miscommunicated in ways that hurt the patient-caregiver relationship leading to feelings of resentment. Keeping this in mind, I paused. Arguing is not helpful. Clear communication of feelings and knowledge as to why XYZ is being asked of the patient and why ABC is being resisted by the patient is helpful to come to an understanding of one another and the root issue. It's at these times that I set my parents down for a heart to heart. 

Fortunately, mom responded well to these heart to hearts and they left her with increased motivation, and we were able to devise a plan for how to still pursue an evaluation with possible treatment but closer to my mother's terms. For example, when she told me that she didn’t know if she still wanted to pursue a Hematology referral we compromised on, make the appointment as the Hematologist doesn't likely have any new patient openings for anytime soon and if it's still earlier than you'd like, schedule it further out.

While her symptoms did significantly improve after I started helping in her caregiving, the last 8ish months of her life, her health rapidly declined to the point that I knew if things continued the way they were, she wouldn't survive another year. One of my worst nightmares is losing my parents and is something I've been fervently working to process and heal from in therapy since 2022. Thankfully for my own well-being, I stopped running from the pain of processing my trauma that solidified an unhealthy attachment to my parents. I'm not sure how I'd be able to cope with the events that have been transpiring if it weren't for the intense trauma therapy I continue to receive.

In my opinion, there were 2-3 main areas of focus for decreasing mom's symptoms to allow her a better quality of life and an extension: managing her liver disease, Rheumatoid Arthritis, and urinary infections. 

We made a lot of progress alone in her liver disease by the success of her Advanced Endoscopist (two weeks before her passing) to finally and fully remove a large bile duct polyp that significantly contributed to the development of liver disease. The location of this polyp was only allowing our GI specialist to trim the polyp every 3 months in an ERCP. As the polyp grew, her symptoms worsened and each ERCP was hard on mom requiring additional recovery period. While the Advanced Endoscopist was successful in fully removing this large polyp, another polyp was discovered further up in the bile duct but was scheduled to be tackled in her next ERCP. 

She was diagnosed with Emphysematous Cystitis (EC) just two weeks before she died. EC is a UTI with a gas producing bacteria. This was particularly concerning for me as the mortality rate for EC is reported to be 7% and if not caught early, increases to 20%. This wasn't what ended up killing her though.

Combining this knowledge with my trauma attachment, was devastating for me. However, I coped much better than I would have before I started my intense healing journey in 2022. While I was fearful and anxious, I was able to navigate it with greater ease than in the past and came away from that experience with the realization that I needed to remain alive for mom to receive the care she needed, especially if her health was going to continue to decline. And most importantly, I was okay with being alive for her until her passing. This alone is an incredible display of growth on my part as I've had the long-held wish that I should die before my parents out of fear of how I would I even possibly be able to cope and live without them. Through my therapy and before losing mom, I reached a place I knew I could not only envision life without my parents, as difficult as it would be, but I knew that I would be able to manage. While my life wouldn't be the same without my parents, I believed I would be able to find a way with the support of my people, to live and not merely survive. I still do not want to live without my parents, but I was able to trust that I would be able to live and accept the need to be alive for my parents' well-being during their final years. Now don't get me wrong, I still hoped we all three would have died together as my parents and I have often joked about in some natural disaster - this remains my ideal. 

Dad and I never imagined though that we would lose her so soon. I tried to prepare dad for thinking ahead because of mom's rapidly declining health. I was afraid she would require a 24/7 private caregiver or nursing home placement before long. After she was treated for the EC, she had an incredible 1.5 weeks for her. She went out and did things, went to many medical appointments and was able to go do the things she wanted as long as dad drove her and helped her walk into places. And then on that Wednesday, she started feeling worse. Thursday, she cancelled her medical appointment that day. Friday she couldn't move without dad's help, she was hardly eating or drinking anything. She refused to go to the hospital. Dad never pushed mom to do anything medically she didn't want to do. She didn't seem to take it well from dad. Whereas, with me, she did. 

I came over on that Saturday morning and dad asked me to try to convince mom to go to the hospital, to the main location, and by ambulance. Mom was curled up on the couch, she probably weighed under 100 pounds at this point if it wasn't for the loose skin of her apron belly from her abdominal surgeries. She couldn't move any amount without increased pain and of course remaining still didn't alleviate her pain either. She couldn't walk by herself; she couldn't pick up her legs onto the couch herself. She couldn't really do anything by herself. Amazingly though she was able to clearly remember her medications and when to take them. Liquid dribbled out of her mouth when she tried to drink from a straw - more than I had ever seen. She could barely talk. She had difficulty enunciating and while she could kind of say sentences, they had to be short, but the words were hard to understand. These two things alone were new, alarming developments.  

When talking to mom about needing to go to the hospital, her response was "what are they going to do? Give me fluids and antibiotics?". She was exasperated and I could tell she didn't think the hospital was going to do anything more than fluids and antibiotics so what a waste. I just thought "No, mom. They're going to do so much more." I explained to her that she couldn't live much longer like she had been the last two days, she wouldn't make it through the weekend if she didn't go to the hospital. I convinced her to go by ambulance to the hospital we knew she needed to go to for the best care, where most of our doctors are. 

I had access to mom's patient portal so every time she had any test done even in the ER, I could view the results long before the ER nurses or even the doctor came to tell us. From the lab results and when the ER doctor was finally able to see us all in person, he asked the nurses why she was still there in ER in an urgent questioning manner and when he said, "She should be in ICU", I knew we were way deeper in it than any of us had realized. We never would have guessed that mom was in septic shock, her life was second to second. The ER doctor wouldn't let mom make any decisions, he said she was cognitively impaired from the sepsis. We went against mom's wishes and made her a DNR for that day and night. And through all of this, mom had some of the best hearing she had in years and would remember things being said around her and then later on ask for clarification about what we were talking about. We were astounded. But that was mom. She was always leaving us astounded and she continued to the rest of her life up until her final breath. She was alive long after she medically, scientifically should have died. She became lucid enough in the midst of everything that while I was making the medical decisions for her, I felt she was lucid enough to be involved in her care and to know what was going on, no matter how harsh the truth was. And that's how mom wanted it - she wanted to be involved in her own care and she didn't want anything kept secret from her. She furrowed her brows I was told when I would talk quietly to any hospital employee and especially if I stepped out of the room to talk to them. And she would relax and appear relieved and peaceful when I would come back and tell her what had been discussed. She even asked me that second day in the hospital, "You wouldn't lie to me, would you?" No mama. Never. She hated it when I told her we didn't know things, she was afraid that I was hiding the severity of things from her. I just didn't know because I couldn't tell the future - I knew the current risks but I didn't know what was for sure going to happen until the day I had to tell her that we were putting her on hospice. That was when we knew there was no more hope of saving her. The only thing left I could do as a caregiver was make her last days as comfortable and full of love as I possibly could. And I did just that with the help of my dad and mother-in-law. She died with me and dad by her side. Her ever-faithful daughter never leaving the hospice facility and rarely leaving her room while her ever faithful husband took care of their home and her pets for her when he wasn't at the hospice facility.

Mom had an affinity for dragonflies the last few years of her life, she liked that they're called Skeeter Hawks. As we left the hospice facility to return to our own homes respectively after saying our final goodbyes to mom's physical body - a dragonfly was caught in the grill of mom's car. I asked dad what he thought it meant.

"I caught her". 

Watch Sharing Mama's Story for a detailed account of mom's last weeks alive, including our time at the hospice facility together. 

How We Can Use Hardship to Build Our Resiliency

Most of us are aware of the popular saying that “what doesn’t kill you makes you stronger”, which was shortened from the original saying penned by philosopher Friedrich Nietzsche. Nietzsche, who is a fascinating philosopher to study, argued that while life’s suffering provides an opportunity for growth and building strength, the ability to build strength from suffering comes from existing strength within someone. This is a view that has been told and retold throughout written history before and after Nietzsche.

This all aligns perfectly with a renewed outlook on the saying “what doesn’t kill you makes you stronger”. Perhaps you have seen this new perspective tweeted by @rkkaay that has been shared around the internet:  

“Your trauma made you stronger. No, my trauma made me traumatized, it made me weak, gave me sleepless nights and memory loss, it gave me feelings I’ve never wanted. I made myself stronger, by dragging myself out of a dark place and dealing with consequences that weren’t my fault”.  

I absolutely love both perspectives of how hardship and trauma provide an opportunity for building strength. It is ultimately, within us where the true strength lies and is activated by trauma. The trauma is merely a trigger signaling to us to build from the trauma experience. By viewing life's hardships in this manner, the power is restored to the individual. It is not the trauma that holds power over us, it is we who holds power over the trauma. This is an incredibly vital understanding for processing trauma, particularly if the trauma has led to Post-Traumatic Stress Disorder (PTSD).

As a rare disease patient whose medical experiences led to the development of medical PTSD, I realize firsthand how powerless and helpless PTSD can leave one feeling, especially when combined with depression. It can become completely crippling to one's efforts to participate in normal daily functioning.

Not only can recognizing that the ability to grow and build from trauma lies within oneself instead of externally be life-changing by itself but also identifying and acknowledging where the growth shows itself in one's life as well. When we build from our inner strength through hardships, there are common perspectives or understandings that many of us adopt or learn. These new understandings are quite powerful in themselves as well.

Empathy Not Sympathy

It can be difficult at times to empathize with others and their experiences when we don't have any experiences to help us relate to another's. Many confuse empathy with sympathy; however, they are drastically different. Sympathy is a feeling of pity for another and their experience, it stems from a desire for us to not have the same bothersome experience of someone else's with a motive to not feel the discomfort that thinking of another's experience triggers within us. Whereas empathy is compassion for another's hardship with relation and understanding of their experience without any underlying motive about our own feelings but rather a focus on their feelings. When we experience a trauma, it broadens the realm of life experiences we encounter and by doing so, it allows us to build our empathy for others and their hardships. While one hardship may not be exactly the same to another person's hardship, our ability to relate progresses and based off our experiences we can find compassion for that of another's even when they are on the surface very different. When we relate to one another on a deeper level, we can provide and receive support from one another - strengthening our social connections. And strong social support in turn increases our resiliency to hardship.

Community Building

This is why community is so important for one's well-being. Often times, especially for men, the notion of being completely independent to the point of not allowing any help or support from another person whether it's physical, emotional, mental, or financial becomes romanticized and striven for by many. However, in reality, such extreme independence can negatively affect one's mental health as it leaves one vulnerable to feelings of shame, guilt, worthlessness when support is required. When these conflicting beliefs and feelings are not resolved, the dissonance can lead to new hardships created by a maladaptive attempt to stop the contention resulting in chemical dependency or substance abuse, for example. We see this struggle between what one believes they should be as a hyper independent person and the reality of requiring some type of support most often among men and individuals in careers that emit or require a presentation of unusual strength physically and mentally, for example military and law enforcement. These are also fields that provide unique experiences that the general population is not subjected to in most cases. For these reasons, community building of those with similar experiences becomes even more crucial and when psychological conditions and maladaptive behaviors occur that require a higher level of intervention and such communities can be very helpful.

I've experienced the need for such a specific type of community in my own medical experiences as a child and teenager with an ostomy and as a rare disease patient. Attending The Youth Rally and UOAA conferences were life changing in their own rights for me as an ostomate - I was able to meet and develop lifelong friendships with others of my own age who also had ostomies. And through the online rare disease community, I finally found the connections I so desperately needed as a child who didn't know anyone else outside of my family with my rare diseases.

I learned over the last two years in my metaphysical classes that receptivity to the support of another is not just about us receiving from one another, but it is also about the other person who is wanting to give. By receiving their support, we are giving them that opportunity to give, to grow themselves, to increase our social bonds to one another. As a giver, it can be difficult to receive from others and I try to remember this now when someone is wanting to give to me.

Self-Care

As I finally learned self-care in 2022 and after many trial and error attempts, I've learned how to also maintain self-care now, I have a new appreciation and understanding of self-care. Self-care is difficult to learn or achieve when we are in a survival mode but eventually, our minds and bodies will force us to learn self-care if we want to improve our mental and physical health. This is another difficult task for a giver which can be bred through hardship as well. My own medical trauma led me to want to give to others to help them through theirs and so I often gave more of myself than I had to give and once I stopped living in survival mode, my mind and body let me know it was time to learn self-care. Part of self-care is managing our energy and health needs to protect ourselves from burning out or causing more harm to ourselves. Like any habit we want to create, we can start small and build upon that starting point. We won't learn self-care in one fell swoop, it's a learning process just like the rest of life.

Building Appreciation

A common negative thought pattern that we all practice at times is discounting the positive and focusing on the negative. We do this also when we practice all or nothing thinking, black and white thinking. Both of these cognitive distortions make it difficult to appreciate the good, the positive in experiences and in life in general. An attribute of resiliency is the ability to practice appreciation and gratitude. Some days this may be harder than others but at the end of the day, being able to step back and find something to be grateful for even on the hardest of days can make the difference in reducing the hold of depression. This is not to say that positive thinking or gratitude are a cure all for depression, but they are healthy coping mechanisms that can be employed during hardships to help us decrease the mental toll of a difficult time. When experiencing a chronic hardship, such as with chronic illness, a person has two paths they can choose to take - either it can become so difficult to appreciate the good moments because one is so bogged down by the fear of the next let down OR the good moments can be savored and reflected upon with fondness and deep appreciation. Personally, I find great joy in relishing the good moments, savoring them and appreciating them in all their glory. When we have chronic pain and we do an activity without resulting in a pain flare, that's something to appreciate. When our doctor's appointment or test results are good or better than we anticipated, that's something to appreciate. When we remembered all of our medications without missing any of them, that's something to appreciate. The beauty of appreciation is that appreciation doesn't have to be for something huge - it can be for literally anything. And when we find moments of gratitude, we are building up our inner strength.

Gaining New Perspectives

As we develop each of the previously discussed skills and healthy coping mechanisms, we can begin to gain a new perspective, a wider perspective. When we feel pinned down by a difficult time, our view of the situation at hand can quickly become hyper focused and narrowed creating tunnel vision. Negative thought patterns will arise during tunnel vision as well and depending on the narrowed view we are taking, we may become overwhelmed by feelings of hopelessness, stress, defeat, fear, anxiety, etc. When we notice such moments, it is important to engage in behaviors to help widen our view once again and looking at the situation from a different viewpoint. In the midst of a crisis, or what even feels like a crisis, this can be challenging. Taking a moment to pause, to avoid rumination, regroup with the larger picture in mind and consulting with others are all small steps that can drastically change one's view on a difficult situation. For example, when my last surgeon said that there wasn't anything else for him to do about my chronic, debilitating pain that developed 2.5 weeks after my gallbladder removal, I was overcome with a brief period of depression and utter devastation. After I cried my heart out for hours and probably took a nap from exhaustion, I awoke with a new perspective on my pain and was able to devise a new plan of action for finding out what was causing my pain and for any possible effective treatments. It was with this wider view of the big picture that I was able to draw upon my inner strength to carry me through the next 6.5 months that it would take to obtain a diagnosis and effective treatment plan.

I struggle with catastrophizing potential future events, fixating on the worst-case scenario I can possibly imagine. This is a cognitive distortion that I continue to work on in my EMDR therapy and stems from my medical PTSD. I am becoming better equipped to identify when I am catastrophizing potential future events and exploring a new perspective of moderation, reducing my all or nothing thinking in regard to my fears. The more that I am able to practice this, the more I am gaining a new perspective on life, my future, and how I can cope in healthier ways.

Ultimately, we get to choose how we are going to respond to hardships in life. Responding and reacting are two different things. Reaction is that knee jerk reaction without any thought involved, however, responding is when we take the time to decide how we want to respond instead of automatically going with our initial gut reflex. Learning how to respond is part of healing and building upon the strength within ourselves that can be shown to us through difficult times. For even appreciation can be given to a hardship for the opportunity it provides to grow, for revealing what may not have been visible to us previously. Until that time, when facing a difficult moment and awaiting to come out on the other side of it, we can engage in daily practices to keep us above water while we are navigating those periods. 

La Mémoire Noire

La Mémoire Noire or The Dark Memory is a letter series written to my first surgeon. The man who caused everything ultimately in my life to reach this point today. I was to have 2 surgeries beginning at the age of 9 and his surgical errors altered the course of my life. Ultimately, I instead would require 7 surgeries and experience repeated life-threatening complications resulting in medical PTSD, suicidal and homicidal ideation. This is trauma I am still trying to heal from nearly 30 years later that has touched every aspect of my life and how I react, view, and process the world. I have a lot of hate and anger for this man. As part of my therapeutic efforts to heal, I am writing this series to him. It is my raw, unedited thoughts and feelings towards this man and all that transpired following my first surgery that he performed. It will be a series that is periodically updated as I process each letter, my trauma, and continue inching towards healing embodying full love and forgiveness for myself and others.

Living for Work

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

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

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

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

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

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

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

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

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

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.

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.

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.

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.

To the Broken Hearted

After disclosing about my own journey through broken heartedness and divorce while dealing with my chronic illness, I heard from several people who had gone through similar trials and it touched my heart.

Regardless of the type of relationship, those of us with a chronic illness are more vulnerable in our relationships than our healthier counterparts. We open ourselves in ways others aren't forced to expose. We are more at risk of losing ourselves as we learn to lean on another to help us through our health struggles and we begin to share our health experiences with another. When the relationship ends, regardless of reason, we are vulnerable as we regain our footing and independence.

This is dedicated to all those who are broken hearted and struggling.

Your soul has been ripped apart as you stare down at the tattered pieces of your heart.

The pain sears your soul leaving you tender, hurt, and confused.

All that you knew changed in an instant and you're left not knowing where to turn or what to do.

You fell into a spiral of lost control frantically grasping to regain your footing.

I've been where you are now. My soul was torched, my heart in pieces, and my spirit broken. I didn't know what to do. My sole remaining purpose was just to survive. My mind couldn't handle more than mere survival. I was trapped, suffocating in my heart break, desperately clawing at my own spiritual grave. Clawing for relief, for light, for healing.

One day my heart mended enough that the suffocation began to lessen bit by bit until one day I burst forth from my grave and found myself soaring with the strength of the eagles. A transformation was taking place but it could only occur after the flames of soul searing pain had burned long and hard until finally extinguishing themselves.

With a new found strength I realized I deserved better. A better state of mind, better days, a better life. I accepted that I deserved happiness and that I could create my own happiness by being true to myself. I learned to accept myself, to do things for myself, and to follow my heart. I was only able to learn these lessons though after I felt my pain and survived it. I was stronger and better for it.

Your days may be long and your nights hard. Your tender heart vulnerable in its current state. But you will not remain here. You will burst forth from the flames that presently surround you. You will survive and be better for your heartache. Let yourself feel the pain so that you may process the pain. Take the time you need for self-healing and self-loving. Make this part of your daily ritual for self-care.

This is your time, your life. No one can steal this grand moment in the making from you without your permission. Savor this moment, relish in your self-worth. You are worth it and so much more. You are not your heartache. You are a survivor with a story to tell and a life to create.

You're Not Lost: How to Find Yourself When Life Takes a Detour: Amy's Story

This is a guest post by Amy Oestreicher

Sometimes, the best way to find yourself is to just get lost. When you don't know where you’re going, the world can be a scary place. That’s what drives our to-do lists, our calendars, our goals and our life plans. I know this all too well, as someone who had a minute-to-minute agenda, planning and plotting every major milestone in my life from birth to bachelor’s degree to Broadway debut. But sometimes, life takes a detour. Something that a 2016 yearly planner can’t always account for.

What’s a detour? Google has an answer for that:

noun 1. a long or roundabout route taken to avoid something or to visit somewhere along the way. "he had made a detour to a cafe"

verb 1. take a long or roundabout route. "he detoured around the walls" A detour, according to its French origins, literally means a change of direction.

I, however, have my own definition of a detour:
A detour is a curve in the road of life, a bump in a path, a big sign in the middle of your trip that says, “sorry, you have to go THAT way.” Nobody expects a detour to happen in life. It’s what happens when we think we have things planned and all figured out…and then we’re thrown a curveball.

A detour is many things – unexpected, a nuisance, difficult, hard to grapple with, frustrating, – but it can be beautiful. Sometimes, we can’t appreciate how beautiful our detour was until we’ve made multiple twists, turns and deviations in our “set-out” path. Sometimes, we can’t realize the beauty of our detour until we spend a bit of time traveling it – we need to give that detour enough time to form a story of its own. After all, every good story comes from a detour. What would be so funny about a forum if “A Funny Thing [never] Happened on the Way to the Forum? (It’s a musical, FYI.) By sharing our stories, we make sense of our “detours.” We reframe our “derailments” as the intricate pathways that make up who we are today. When we tell others about our detours, we become travel partners on these journeys with no straight path. When we know we’re not traveling alone, that road becomes an adventure. Who can say they’ve never had an unexpected glitch in their life-plans? That’s a detour.

What detours force us to do is explore new opportunities. When we can’t go in the direction we anticipated, we’ve got to switch gears and adapt. We have to resource inner strengths that we never knew we were capable of accessing. When we achieve the “unthinkable”, we discover who we really are. Even still plagued with wounds, scars, and some medical issues that haven’t been resolved, I’ve found beauty in the detours. If I took away all of the setbacks, hurdles, frustrations and detours, I wouldn’t be who I am today. Telling my story made me realize the true beauty of my detour. That’s what makes me a Detourist.


What’s a Detourist? A detourist travels along detours – simple enough. But in addition, a detourist embraces those unexpected routes as opportunities for growth, change and self-fulfillment. I’m living proof that a detour can lead to unexpected blessings. As a detourist, I look for the upside of obstacles. I welcome the unexpected change in my “thought-out” life, and see what opportunities may arise.

Because of my ten-year surgical marathon, I’ve written a one-woman musical about my life, Gutless & Grateful, I discovered the world of mixed media art, I've met amazing people, discovered incredible new experiences, and have been through the worst to make room for the best. Starting a Movement How do we make the best of a detour? Sometimes, we just need to hear that other Detourists have navigated their paths triumphantly. What I’ve experienced is, the more inspiring stories we hear about Detourists turning an obstacle into an opportunity, the more empowered we are to transform our own lives and have confidence that when life DOES surprise us, we’re capable of getting through anything. #LoveMyDetour Now, I want to inspire people to flourish because of, rather than in spite of challenges.#LoveMyDetour aims to encourage growth and healing by sharing our stories; to transform communities by inspiring people to open their minds and reframe their view of “detours” into a new direction for life. That’s why I’m spreading #LoveMyDetour around the world.

With that in mind, I’d like to leave you with six ways to love your detour: 1. Savor the element of surprise. Straight paths are boring. 2. Find one beautiful flower along the path and name it after the detour that led you to it. 3. Keep traveling to see where it leads. 4. Find a new friend along the path. 5. Use it as a chance to locate your internal compass. 6. Put the pedal to the metal and take the best road trip of your life! So how do you get un-lost? You know how you realize you're normal once you realize NO ONE is normal? Well you get un-lost when you realize were all detouring together. If we keep going, we're not lost. We're Detourists. Thriving Through Detours #LoveMyDetour is a campaign inspiring people to flourish because of, rather than in spite of challenges. #LoveMyDetour aims to encourage growth and healing by sharing our stories; to transform communities by inspiring people to open their minds and reframe their view of “detours” into a new direction for life. “Detours” have created the most scenic surprises in my world. Now, I envision a world where “detours” in life are everyday blessings. The road is open with open possibility, with voluptuous curves, with wandering wonder. Safe travels, Detourists!

 Learn more about creating compassion through our detours at amyoes.com.

Amy Oestreicher is a PTSD peer-to-peer specialist, artist, author, speaker for RAINN, writer for The Huffington Post, award-winning health advocate, actress and playwright, eagerly sharing the lessons learned from trauma through her writing, performance, art and speaking. As the writer, director and star of the Gutless & Grateful, her one-woman autobiographical musical, she's toured theatres across the country, earning rave reviews and accolades since it’s BroadwayWorld Award-nominated NYC debut. As a visual artist, her works have been featured in esteemed galleries and solo exhibitions, and her mixed media workshops emphasize creativity as an essential mindset.

Amy’s “beautiful detour” inspired her to create the #LoveMyDetour movement, a campaign inspiring people to flourish because of, rather than in spite of challenges. As the Eastern Regional Recipient of the Great Comebacks Award, Amy has spoken to hundreds of WOCN nurses on behalf of ostomates nationwide. She is a regular lifestyle, wellness, and arts contributor for several notable online and print publications, and has written for over 50 online magazines and blogs. on Her story has appeared on the TODAY Show, CBS, Cosmopolitan, Seventeen Magazine, among others.

Amy's passion for the arts as a means of healing and expression led her to devise storytelling workshops for the Transformative Language Arts Network National Conference, the Eating Recovery Center Foundation, and The League for the Advancement of New England Storytelling.

Determined to bridge the gap of communication between wellness resources on college campuses and students, Amy is currently touring college campuses with a program combining mental health advocacy, sexual assault awareness and Broadway Theatre.

For information on keynote presentations, private coaching, workshops and signature talkbacks, visit amyoes.com and follow her on Twitter Instagram, Etsy and Facebook.