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. 

Living My Best Life

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

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

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

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

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

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

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

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

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

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

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

When You're Eager for Medical Testing

 

I don't think I've ever been so excited to undergo medical testing as I have this last year. I felt like I was literally begging for any medical test to be ran and I wouldn't even say I felt that way during the 6.5 months I spent seeing 7 specialists to ultimately diagnose my Abdominal Migraine. Sure, I was willing to do any test, but I didn't realize at the time that I needed tests to be done...I didn't have any idea of what needed to be done to determine why I was having debilitating pain that kept me bed bound for the day except for my time spent at work. But this year has been different. In fact, everything has been different ever since my gallbladder removal in August 2021 and I believe this present issue stems from that surgery as well.

My gallbladder removal exacerbated my undiagnosed Abdominal Migraine and I believe it also kickstarted something else - what exactly is yet to be determined. Let me back up and I'll give a brief timeline for understanding. 

• August 2021 - gallbladder removal, chronic debilitating pain starts following surgery. I'm started on Lyrica in December. After surgery, I begin losing about 10 pounds a month until February because I have no appetite and Mike forces me to eat one meal a day. In March, I started to gain a small amount back and then hold steady as my appetite improved a bit.
• April 2022 - diagnosed with Abdominal Migraine, Amitriptyline medication is added to the Lyrica. Sometime between April and July, I start noticing that not only do I feel full easily and quickly but I also feel like I need to vomit.
• July 2022 - I start vomiting whenever I feel too full. It literally feels like I have food all the way from my stomach to the back of my throat. If I don't vomit, I continually regurgitate it and swallow it on repeat until I lean over, open my mouth, and squeeze my stomach. This is not vomiting caused by nausea. This will begin to progress to increase in frequency and ease to the present day. My weight continues to incrementally increase again until by January 2023, I have gained back almost all of the weight I lost following my gallbladder surgery. 

This entire time, I'm keeping my GI specialist informed. I started asking for an EGD, even though I wasn't due for another one until 2023. He tests me for C. Diff, he's monitoring my labs but everything keeps coming back fairly decently. In spite of vomiting up to 3 times a day, I'm maintaining weight. Some days I don't vomit at all. Most of the time when I do vomit, it's not immediately after ingesting food or drink and I don't always eat healthy foods. So my body is still able to get enough calories and nutrients to sustain itself. We try adjusting PPI dosages and trying different PPI medications. I undergo a food test study where I eat a meal with radioactive substance that is recorded in a body machine to determine the rate my stomach empties into my small intestine - to determine if I have gastroparesis. It shows my stomach empties food faster than someone with gastroparesis. 

In December 2022, I finally undergo an EGD...but it's pretty normal, some mild gastritis but no unusual acid found, no bile seen at all, esophagus looks good, my usual polyps are found, no sign of a hiatal hernia. I ask to complete a SIBO test, just in case. It came back as suspected SIBO...but I question the accuracy because I think I may have skewed the results by doing my baseline breath sample twice because I was uncertain, I had done it correctly at first. But either way, I completed a round of two antibiotics for SIBO. Nothing changes. 

The only thing that reduces the vomiting, not eliminate it, but reduce it is not ingesting anything. However, I discovered during a partial blockage that when I don't ingest anything...my body will make me vomit bile - and that was one of the most, if not the most, awful taste I've ever experienced. 

I undergo an EGD with Bravo Test to check the PH level of my stomach acid. For 10 days before the attachment of the Bravo test capsule to my esophagus, I had to stop my PPI. This resulted in vomiting bile that tasted of pure lemon juice. At least it was better than regular bile taste. My throat becomes inflamed and irritated though from the vomiting of bile without the protection of my PPI. The Bravo test comes back with significant acid reflux and esophagitis. I'm still not sure why I needed to complete this test because I've been diagnosed with GERD since my colon removal in 1995. However, my GI assured me that it would be helpful in identifying what may be going on and what steps to take. Oddly enough though, the surgeon I went to in 2021 for a second opinion about my hiatal hernia following my gallbladder surgery recommended an EGD with Bravo Test. The reason he did, I've since forgotten because my hiatal hernia was so small at the time, he wasn't even positive I had a hernia. And I wasn't having the urge to vomit or uncontrolled acid reflux. But fast forward, and I'm going to have that test done anyway. Fine by me, just as long as we're doing something to identify the cause for my vomiting and can attempt to resolve it. 

The next test to complete is an Upper GI Series with Small Bowel Follow Through. Essentially, I drink barium contrast and images are taken as my body digests it to help evaluate for small bowel obstruction. In my experience, this hasn't been very helpful except to say yes, I do have adhesions or in the case of when my small intestine wrapped around itself. But this type of test was unable to determine there was a stricture around my small intestine from adhesions resulting in my near death from excessive vomiting and diarrhea. That was only discovered through exploratory surgery. However, I am willing to undergo this test. It is just one step closer to something else being done and a checkmark for insurance requirements for further testing. My GI wants to do this test though due to my history of a stricture around my small intestine caused by adhesions. He thinks that small bowel obstruction could be contributing to my vomiting, and it very well could be, that is what caused my vomiting in high school after my ostomy reversal. 

The following week I will undergo an Esophageal Manometry. I had a PTSD related panic attack once I looked up this test. A tube must be inserted through the nose into the stomach and then the patient swallows while the tube measures the motility of the esophagus to test for different conditions. I absolutely want to do this test but I'm terrified of being awake while this tube is placed. I think this test is necessary as I've thought all along that there is something wrong with my esophagus. Fortunately, my GI agrees to place the tube under sedation and to allow my dad to be with me during the test to help calm my trauma responses. This is scheduled for May 11. Just like the EGD in December 2022, I am 100% ready to do this test. I am excited, eager, impatient to do this test. In fact, let's do any and every test that may possibly answer why I'm vomiting so it can then be treated. 

In all reality, I anticipate I'm likely facing surgery to resolve my vomiting at some point in the future. The Esophageal Manometry can help to diagnose or rule out a few conditions, majority of which can be treated with surgery. I accepted a long time ago that I would likely have future surgeries and at this point, if surgery is what will help resolve the vomiting...I'm eager to undergo surgery too and the sooner the better. I just want to identify the source and work on a treatment plan to resolve it. 

A Deadly Duo

I lay on the cool, hard floor; resting my head upon my dog's shoulders, tears stream down my cheeks, and wrap my arms tightly around his neck. I cling to him for dear life as I contemplate my own life. I'm home alone and no one is due to come around for hours. Thoughts race through my mind consumed by depression.

I enter the kitchen and there he stands facing the window, his back to me. We stand in utter silence, not even able to hear the usual sounds a house tends to create. He makes no acknowledgement of my presence, perhaps he doesn't realize I'm standing behind him. My mind races in the mix of my depression and my anger.


We all have fleeting thoughts inspired by death, whether it's a mere moment of thinking "I'm done, just end it all" or brief anger inspired thoughts for harm to another as simple as "I'd like to hit your car with mine". These thoughts dissipate as quickly as they appear and in the flash of a moment they're forgotten as our mind shuffles around our thoughts, storing some, discarding others, entertaining a few. However, when our mind begins to fixate on such thoughts we know there is more going on within us. I recently shared my own battles - past and present - with depression and anger and the struggles of living with these friends.

Depression and anger are the perfect deadly duo. Depression isolates us from others and activity, burying us in pain and apathy, draining us of life. This is why there are precautionary statements for risk of suicide with antidepressants and as a warning sign for suicide...as our depression lessens, our energy increases and we suddenly have the energy to carry out that suicidal intent and plan we've been mentally preparing but previously didn't have the energy to complete. Anger on the other hand tends to be a mask for deeper anguish, it behaves as a coping mechanism...creating barriers between ourselves and others and within ourselves. With anger we always have an excuse to push others away and to not tackle our underlying issues. Anger gives us the peace of displacing attention from what is really bothering us onto other issues, typically minuscule and fleeting.

Depression and anger, that blissful pair, remind me of a quote from the character Dr. Sidney Freedman from the TV series M*A*S*H  when he states "Anger turned inwards is depression. Anger turned sideways is Hawkeye." Interestingly, Hawkeye combats the Korean War in his own rebellious, authority defying, snarky style and at the end it becomes too much for him to bear and he is institutionalized. No matter how hard we fight, how much we rebel against the atrocities of life we witness and experience, at some point we will find our breaking point if we don't take the necessary self care precautions to protect ourselves from harm - physical or mental.

There are moments in our lives that serve as an alarm, a distress signal. If we ignore this alarm, we may face detrimental long lasting effects. Our alarms will vary from person to person, some need very loud alarms and others require little prompting.

I have endured bouts of depression over the last 20 years and it is triggered periodically, particularly after traumatizing experiences. As college classes resumed after spring break vacation, I returned to school and although my body was present, my mind wasn't. Being around others, away from the safety of my home, and the stimulation of a busy environment overwhelmed my psyche as it attempted to recover itself from a traumatic experience the week before. I was unable to function at work or school until my mind could recoup from my recent trauma and address the issues at play affecting me. Had my professors and myself ignored the distress signals of depression, crying episodes, hyper vigilance, and severe anxiety my acute stress disorder could easily have progressed into post traumatic stress disorder with long lasting negative effects. Instead, we heeded those alarms and with assistance I obtained the professional care and help I needed to resume a functioning daily life.

My family and friends joke about my temper and the subsequent venting meltdowns that occur until my anger becomes smoldering rather than fiery. I have experienced extreme anger beginning after my first round of surgeries and complications. I was angry about my health, ostomy, and life changes. I developed post traumatic stress disorder and depression, I coped with these diagnoses through anger. I was surprised when a co-worker chased me down a hallway shaking a small bag of tortilla chips offering them to me as consolation and to calm my fiery temper down after a meltdown. Being chased with chips served as an alarm to me and I realized that I needed to work on my temper again.

When depression and anger combine forces, we are left fighting against ourselves and the world. Depression and anger work together in magnificent synchrony to isolate us through withdrawal and creation of barriers in an effort to destroy us from the inside out, feeding off of each other and our experiences of trauma, pain, and heartache. We begin to lose ourselves amidst the battlefield of depression and anger, we begin to say and act in ways that are not like us as we are pulled harder and fought over between this duo. This is a wake up call to pull back harder and break the grasp of depression and anger so that you may escape and return to yourself. If we don't, we are pulled closer and closer to death whether by our own hands, worsened health complicated by the depression, anger and stress that is evoked, or through risky situations we may place ourselves within due to reckless behavior. Breaking free is not easy but it is doable.

Your psyche wants to protect you, pay attention to the alarms. Take it a moment at a time, seek out counseling and reach out to friends and family. Also check out these other free support resources.

Health Maturity: Reaching New Milestones

Living and coping with a chronic illness from a young age pushed me into a level of maturity my peers wouldn't reach for decades. The responsibility of taking care of my own health, appointments, medications, diet, and more aren't typically tasked by most individuals until they reach at least young adulthood and if in good health, even years afterward. In my young years I learned a multitude of lessons providing invaluable skills and values to last me a lifetime. I learned perseverance, ambition, how to thrive and survive, hard work, responsibility, compassion, empathy, health intelligence, my body, fear, distrust, hopelessness, and anxiety. It is these last lessons that became so ingrained within my psyche that I was left with Post Traumatic Stress Disorder and emotionally crippled, fixated in an inability to mature and grow to complete independence and trustfulness. During health crises, I would regress to a child like state and mentality filled with terror.

Due to this fixation, I remained with the same doctor, a pediatrician for 20 years. My parents are always available to help support me through my health issues and in the past I required 24 hour care while in the hospital. I feared being alone and I feared doing too much myself while hospitalized due to pain and risk of increased pain. For example, I usually require multiple tries for an IV and once successful  I refused to move my IV arm as I learned that increased movement causes the IV to require replacement faster and I typically required a new IV at least once per hospitalization. I was rarely left alone due to the combination of lethargy, pain, fear, and difficulty completing tasks.

After 8 years of stabilized health and no hospitalizations, my streak ended. I was unexpectedly faced with multiple challenges I've been dreading for years in addition to hospitalization. I am in the process of obtaining an adult GI doctor and my doctor has been out of the office due to her medical assistant's death. As a result, I didn't really have a doctor assigned to follow me and provide orders when I suddenly required an adult GI doctor.
Due to ongoing depression, I restarted taking Zoloft medication and began experiencing lack of appetite. I was surviving on primarily cheese and crackers for 1.5 weeks. During this time I became dehydrated and Wednesday morning my blood pressure bottomed out to 88/58 resulting in near fainting. I fell backwards and hit my head at work. My coworkers forced me to the ER. My stubborn self wouldn't have gone to the hospital had I fallen anywhere other than work and  my coworkers knew it. I happened to be having a GI bleed this day as well - a normal monthly event for me. I was to be released from the ER after receiving fluids and I was scheduled an appointment with my to be  new GI adult doctor for the next day to be followed by a scope. As I was leaving the ER my blood pressure bottomed out again and this time I would remain in the hospital for four days. The hospitalization would lead me to new milestone achievements in my level of maturity. I was given a new IV without any tears this time. After I settled into my room, I sent my mother home and I spent the majority of the days and throughout the nights on my own. I provided my own care, even taking a shower. I received upper and lower scopes - my first ever scope with my pediatric GI doctor to be present. I require general anesthesia for scopes as I wake up otherwise and I have a preferred anesthesiologist who my pediatric GI doctor always tries to schedule with due to my level of comfort and trust with this particular anesthesiologist. These scopes would be performed with another anesthesiologist and a partner of my new adult GI doctor. I was anxious regarding the anesthesiologist and although I previously visited with the GI doctor and felt comfortable with him, I was overcome with anxiety and tears in the procedure room. The anesthesiologist and nurses provided reassurance and I quickly drifted off and awoke in the recovery room. I was informed that I have a few stomach polyps and four ulcers in my ileum and biopsies would be performed to test for cancer and Crohn's Disease. The GI doctor explained that ulcers in the small intestine are common in Crohn's and would like to cover all bases in my care. At my last scope in 2007 I had polyps in my stomach and small intestine. It was at that time my pediatric GI doctor gave the prognosis of developing stomach cancer by age 30. I'll turn 30 in just over one month. I anxiously await the result of my biopsies.
That night I ate my first solid food since prior to the hospitalization and that night I suffered the consequences of severe diarrhea and pain. I was given morphine for the pain and experienced negative side effects including intense nausea and intoxicated symptoms. After receiving Zofran, I required Phenergan to stop the nausea. The following day another partner of my new adult GI doctor visited with me and released me once I felt ready, stating he understood that I know my body and what I need better than any of the doctors.

I was discharged and I'm still coping with the inability to eat very much food due to severe pain. This is similar to how food affected me after my surgeries in high school. It took years for my body to adjust to food and only experience intolerable pain after large or rich meals. I'm extremely frustrated with this return to debilitating pain with any amounts or types of food but am taking it a moment at a time to readjust and resume my normal eating habits.

I made it home with my health, sanity, and a lot of milestones to be proud of. I survived a hospitalization without constant care, stayed the nights by myself, without my pediatric GI doctor overlooking my care, my first scope in 8 years, and changed doctors. I truly dreaded all that was to come about during this trial but I survived and am filled with a sense of hopefulness, relief, and pride. I can't believe I made it through especially with minimal difficulty and only brief PTSD symptoms.  I've been frightfully dreading these milestones for decades and all in one week I finally surpassed each one. Reaching a new level of health maturity has provided me confidence in my ability to face future hospitalizations, procedures, and changes.

Celebrate your milestones for each takes thousands of small steps 

to reach that moment in your life.

Depression: An Ongoing Battle

Depression has settled into my life uninvited like a tag along side effect of chronic health issues. It enters and leaves me with little warning at times, the triggers barely recognizable to others. But I notice them. It's a battle that has been waged for nearly 20 years now, beginning with my first year of surgeries. The medical trauma I endured left a mental stain upon my psyche, a reminder of what transpired and what I wasn't able to escape. It accompanies the Post Traumatic Stress Disorder that has been quietened over the years but remains lurking in the dark waiting to be resurrected at the most unwelcomed times once triggered. Together they lie at the edges of my life, waiting for entrance cues.

"DEPRESSION IS SUCH A CRUEL PUNISHMENT. THERE ARE NO FEVERS, NO RASHES, NO BLOOD TESTS TO SEND PEOPLE SCURRYING IN CONCERN, JUST THE SLOW EROSION OF SELF, AS INSIDIOUS AS CANCER. AND LIKE CANCER IT IS ESSENTIALLY A SOLITARY EXPERIENCE; A ROOM IN HELL WITH ONLY YOUR NAME ON THE DOOR." - Martha Manning, Undercurrents 

Adjusting to Change

My doctor is one of my primary foundations in life. She is the only GI doctor I have ever had and she has kept me alive during the hardest times of my life. She has stood by me even in hate filled years when I blamed her and others for my health issues. She is one of my biggest advocates and always looks out for my best interest with an intense empathy and understanding of my physical and mental needs. She has maintained me as a patient for these very needs for 20 years, well past the age of a pediatric patient-doctor relationship. In her 84th year, she's begun to further prepare me for transitioning to adult care. This has been no easy feat due to my trust issues of medical providers. I understand her reasons - she's gradually preparing to retire, she has her own health to consider, and wants to ensure I'm medically taken care of and not thrown to the wolves. She has assured me she will continue to follow me and wants reports from my new adult GI doctor and will remain available to me. I was doing well with this forced separation that is beginning. So I thought.

I made another call this week to a group of GI doctors for a new patient consult. I'm lining appointments up with doctors to interview to find the right fit. As I was speaking to intake and was asked what I'd like the scheduler and doctors to know prior to my appointment as well as what kind of doctor I'd like the anxiety and fear began to flood over me, my voice became shaky, and my eyes wanted to tear. I want a doctor like my doctor. A knowledgeable, empathetic, trustworthy doctor who understands my limits and won't push me over the edge. A doctor who doesn't brush me off and tell me I'm "just whiny" like the doctors and hospital staff did when I was a child. I want to be believed and trusted about my physical and mental needs and limits. I don't want to be sent to multiple doctors.
I want my doctor.

Like with any transformative experience, chronic illness changes and shapes us. One way this occurs is our outlooks on life. Some are very cautious while others become risk takers. I believe though in both types, none of us like change. Even a risk taker wants to continue the ability to take risks in spite of the consequences, there isn't an expectation for change.
I am the more cautious type. Change has never been easy for me regardless what the change was. I like my routines, I like to know what to expect. Change is scary for me. Bad things can happen when there is change.

"THE SECRET OF CHANGE IS TO FOCUS ALL OF YOUR ENERGY, NOT ON FIGHTING THE OLD, BUT BUILDING THE NEW." - Socrates

My life was smooth until my first surgery when everything changed from what I had known. My body changed repeatedly within 1 year and so did the expectations as each surgery changed the plan. Originally, I was to have a temporary ileostomy ending with a jpouch. Due to complications from my intestine wrapping around itself and other organs, delayed response by the surgeon and emergency room staff, a portion of my small intestine died including the formed jpouch that awaited my ileostomy to be taken down. Next a straight pull thru was attempted but too much had been removed and a straight pull thru was deemed impossible. Finally, I was left with a "permanent" ileostomy until 6 years later when a straight pull thru was attempted and achieved by a different surgeon. In high school with my second round of surgeries, I once again didn't know what to expect as my health became a roller coaster of instability. That roller coaster gradually leveled out to rolling hills compared to the peaks and valleys previously experienced.

When you're on a never ending roller coaster of instability you remain at a high level of readiness and alertness, maintaining a level of preparedness for the next worse thing to happen. It's exhausting to remain on alert with your adrenaline pulsing at high speed. Such a high level adrenaline for an extended period leaves you longing for the mundane with your health. I lived like this for years: never knowing if I'd live to the next day, when the next hospitalization would be, if I'd be able to complete all of my school work and pass that semester, make it through a work day. Since the roller coaster has slowed I've become accustomed to the predictability of more stable health. I know what my day is likely to consist of and there is predictability even with my flare ups. I know what I can do to reduce flare up triggers, what most helps ease the flare up, and when the flare up will likely end. I can prepare myself and make it to the other side.

There's a comforting sense of security in predictability and routines. For me, it's like a security blanket wrapped tightly 'round, hugging and holding me in the arms of safety. This need for security expands beyond my health to my home and family life, friends, and work. The stress of drama and the unknown are too demanding on my psyche and can lead to negative health effects. Being a Type A Personality, I require goal setting with extensive step by step planning for how I'm going to move from point A to point Z in life. Without this extensive plan, I feel lost in the world. As long as I can readjust my plan I can find my footing once again but if I have a difficult time establishing that new plan, it's a major upset to my mind. Not knowing what to expect is also distressing even in the most insignificant situations. This seems to be common among Highly Sensitive Persons. The unknown is overwhelming and uncomfortable for me. Once I become familiar with the individual, setting, or situation I am able to relax more and find my way. But it's that initial plunge that is highly stressful. And so I don't like those changes either. I become comfortable within my work and social groups, enjoying the warmth and security of the familiar. Changing such environments require me to let myself let go of comfort and plunge into the unfamiliar. This is not always an easy feat.

"IT TAKES A LOT OF COURAGE TO RELEASE THE FAMILIAR AND SEEMINGLY SECURE, TO EMBRACE THE NEW. BUT THERE IS NO REAL SECURITY IN WHAT IS NO LONGER MEANINGFUL. THERE IS MORE SECURITY IN THE ADVENTUROUS AND EXCITING, FOR IN MOVEMENT THERE IS LIFE, AND IN CHANGE THERE IS POWER." - Alan Cohen

And yet, regardless of the reasons for resistance and dislike for change it is a requirement of life and we must find ways to adjust to the changes we face. We all tackle change differently and through trial and error will find what works best for us. I've found these techniques to be particularly helpful during a change process. Depending on the size and challenge of the change, these techniques may require prolonged use or may be accomplished in a seemingly quick fashion.

• Changing the thought, feeling, behavior cycle. There is a connection between our thoughts, feelings, and behavior. We change one and we change them all. It can be a vicious cycle of negativity or it can be a healthy cycle of positivity.
• Thought: I'll never find another doctor I'll trust or like
• Feeling: Hopeless and Scared
• Behavior: Discontinue medical services, guarded or defiant attitude with new doctors, depression, delayed action to find a new doctor, etc.

Change the cycle to:

•  New Thought: I'll find a doctor I like and trust, it just may take some time to find the right fit
• New Feeling: Hopeful and Determined
• New Behavior: Continued pursuit of a doctor for the right fit, openness with new doctors
• Reframing. We have negative thoughts all the time even without realizing we're having them. They're often those fast, immediate thoughts we have that fleet in and out of our minds. These thoughts feed into the thought, feeling, behavior cycle. We can help stop the cycle with recognizing and altering our negative thoughts. This reframing also helps us remember what is possible, our strengths, and gives hope. I like to make "coping cards" and list positive thought reminders, coping techniques, and helpful tips as a visual and tangible reminder.
  
  • This doctor won't be anything like my doctor ---> I'm going to give this doctor a chance and if I don't feel comfortable I can try another doctor.
  • I hate finding a new doctor ---> It can be difficult to find the right fit but I will, there are a lot of good doctors around
  • I can't do this ---> I'm stronger than my fears and anxieties. This is just one more challenge and I will conquer it
•  Goal Setting. Any change in behavior typically requires some goal setting, even if we do this automatically without thought. It's easier to tackle change by breaking it down into manageable, realistic steps. This keeps our motivation going and reduced the feeling of being overwhelmed.
• Relax. Keep your frustration to a minimum to prevent burn out during the change process. Maintaining motivation will keep us moving forward to the other side. Relaxation helps keep the frustration reduced and motivation high. Find what works best for you: hobbies, relaxation techniques, socialization, etc.
• Re-evaluate. When you feel like you're hitting a wall or spinning your wheels, take a moment to breathe and re-evaluate the situation. What is working and what isn't working? Do your goals need to be changed, do you need to readjust your attitude and mindset, is there a better way to tackle this change?
• Support. A support partner during a difficult period of change can make a huge difference in your moral and navigation through the change. Talk about your fears and your challenges rather than bottling them up. Seek your support partner's opinion, set goals with your partner and let your partner hold you accountable to your goals.
• Allow Change to be an Opportunity. Good things can come from change even if it's scary at first. Without change we can't grow as individuals. New jobs challenge our skill sets, broaden our horizons, may alter our economic development. Meeting new people exposes us to new ideas, information, and cultures, allowing us to learn from others and grow our networks. Moving residences lets us experience another area with its own unique community. Challenges and changes add to our strengths and our accomplishments as we progress through the process.

Book Awareness

I'm taking a moment to shamefully and not so shamefully tell you about a book you absolutely must read. Although this book isn't directly related to FAP, it's written by a well known character among the social media ostomy and IBD circles and by association, is relevant to all sickies of the bowel realm.

If you haven't heard already of The Spider and The Wasp, I'll briefly tell you a bit and provide my review to you as well for your own determination.

The author and close friend of mine, Matt, shares his personal story of Ulcerative Colitis and the traumatizing near death experiences he experienced as a teenager and young adult. Many of us FAP'rs can most likely relate to many of his experiences, I definitely can. But he goes beyond the medical backstory and shares how he survived a hellish, hostile work environment with a boss that could quite arguably be described as insane. For example, yelling uncontrollably at him for not answering his phone while using the restroom. Through his medical trauma and PTSD, he details his accounts of coping with a extreme bully boss in a hilarious fashion.

My review:
" Matt Haarington illustrates in a hilarious manner the necessity of survival skills to face the variety of challenges life presents. Challenges at the basic core, we can all relate to regardless of where we are in life or what we’re facing. Just happens Matt’s survival skills are honed over years of trauma and trial and error coping with the aftermath. Like so many survivors, Matt shows us one method of coping is through humor and it is beautifully demonstrated in Spider and the Wasp. No doubt some of his keenly crafted phrases will spread like wildfire and “clown-boning ass-biscuit” will become the next popular catchphrase you’ll hear while walking down the street.

Matt’s handiwork contributes another piece to his readers beyond a good laugh at the expense of another. We feel a sense of comradery, of empathy toward our fellow mankind to rise up against the unjust and fight for the little guy. And with or without intention, he also brings forth further awareness of chronic medical conditions and the stigma and discrimination that many endure. Awareness of the physical and mental ramifications that many of us with chronic medical conditions face through our battles with the diseases, ourselves, and with others. Matt contributes a work of help to the bowel and bladder disease/disorder community and aids to further instill a sense of pride and honor among those struggling.

As a fellow trauma survivor of similar health issues, I’m proud to recommend The Spider and The Wasp to anyone dealing with their own health issues and to anyone looking for a good read and a good laugh."

PTSD Tailspin

I don't think one ever stops having PTSD, the symptoms can be managed and even lie dormant for years but they can always be triggered again to the surface.

I was reminded of this a couple weeks ago when I attended a conference at my hospital. I parked in the public parking rather than the parking building I usually park at when I'm getting lab drawn. This was a mistake.

I walked in through the main entrance toward the elevators to head for the concourse. As I walked further into the building, closer to the elevators an overwhelming sense of anxiety and a flood of memories washed over me. These were the same elevators that had taken me to the pediatric and once women's floor so many times for almost seven years. I walked the main and the outpatient entrances countless times, past the gift shop I loved to walk to when I felt better and past the chapel. It was all too familiar and it was all coming back. I just wanted to get to the concourse where I could relax, there was nothing frightening about the concourse. With ten floors, it takes the elevators a while. As I waited, the anxiety increased until my mind kept repeating "Run, Run, Run". My body said to listen, turn around and run out of the building immediately. My feet were ancy, torn between running and waiting. I had to get control of myself before I had a panic attack. I focused on my breathing until I could get to the concourse and I made it. I was nervous until I got to my seat and tried to ignore the memories awoken that morning. By the end of the day, it was too much. I had to walk through the main entrance again to get to my car. The strain of anxiety and flashbacks were showing on my face and others could tell something was wrong. Once I was back in my car I finally released the build up from the day and sobbed, called my husband and my parents for support.

For about a week I felt the lingering effects of that day and I wasn't expecting any of it. I couldn't sleep, I woke up worrying about when I'll have to change doctors and the never ending risk of hospitalizations and what would happen to me. I cried and felt unusual anger. I missed being able to go to my therapist, who recently retired. She was my therapist since high school and understood my health and mental health struggles and helped me manage my PTSD and depression. Although my health hadn't changed, I was faced with the past and what that could mean for my future and how life changes would affect future health complications and flare ups. And it was terrifying.

We can never escape the demons of our past, but how we decide to handle what we are faced with, recognizing what we're feeling and utilizing support we can make it through each hurdle and when we're pushed into the past and the possibilities of the future.

Surreal

It's been so long ago, the medical tests and procedures, the surgeries and the struggle for life. It's been a lifetime ago but it doesn't always seem like my life. I have to remind myself that it was my life and not someone else's life. I feel like I'm looking through a looking glass, peering into someone else's memories and past. Not my own. And yet it is mine. Every horrible moment, every joyous cause. It's all mine.

I never thought the terror and the battles would fade so much. They don't occupy my mind all the time anymore. I remember everyday but it's just in passing. When my stomach rumbles, when I have to run to the bathroom, when I'm sore. But it's only brief reminders. Even when I have flare ups,  it's just for a night and I can forget the next day. No more constant reminders and complete worry about what I'm eating or what I'm doing. I still feel concerned but it doesn't consume me anymore. How has this change happened?? I've become so far removed from it all. I have my regular check up every three months but I don't have anymore medical tests or procedures. Not even routine. I should have an annual scope but I haven't in 5 years. My doctor knows I'm not budging on this one, I'm not going through the torture of laxatives and enemas. Find another way, I'm not doing it. That's how. I haven't had to go through pain and torture in five years except for flare ups and 1 CT Scan with dye. I'm not being forced to relive the nightmares. I've been granted a pardon, even if only for a short while.

I have to make myself remember the details of those awful years of pain and struggle. It doesn't seem possible that it all happened to me. That it was me going through it all. I swear it happened to someone else, not me. Why are people worried about my health? I'm fine, that wasn't me. But it was. It was me. And they remember. They remember the countless hospital stays and trips. The never ending medical tests and procedures. The need for another surgery. The fear and worry in the doctor's face, the nurses, the surgeons, the team of specialists. The terror I expressed, my screams and cries. My pleas for it to end, to let me die. They remember.

Once I'm thrown back into the medical den it will come flooding back and I'll be consumed again. But for now, for now I've been given mercy.

The Non-Sick

I'd group people into the following categories to describe their frame of reference for understanding chronic illness and empathy.

1. The Sick. These are people with chronic illness, not with bowel disease though. This group can relate to us with bowel disease because they too understand chronic illness. This group is usually very empathetic toward others with health issues and have a medical understanding.
2. The Bowel Sick. This is our group of people, all with some bowel disease. We relate to each other better than any others with health issues. Again, we tend to emphasize with each other a lot.
3. The Non-Sick with Empathy. This group doesn't really have any health issues but sincerely want to understand what we go through. They may or may not have any medical understanding, but are willing to learn. Someone with empathy doesn't require medical knowledge in order to empathize and often have tendencies to have a basic understanding simply due to their inclination to empathize and imagine what life is like for someone with illness. This understanding also tends to be present for not only physical but also emotional symptoms and effects.
4. The Non-Sick with No Empathy. This group doesn't really have any health issues or experience and don't really care to sincerely understand or learn about our conditions or that of others. They may inquire but it is usually due to etiquette or to satisfy curiosity.

 I don't really have any patience for the non-empathetic non-sick and dealing with this group is highly vexing for me. I don't mind and even typically enjoy educating others, answering questions and helping to better understand and support others in their lives. But when a person doesn't have any interest in such things and only feigns interest for their own hidden benefit, I don't really care to answers questions. I don't want to be a part of their games or help them in their games. I also don't really care for such people to pry into my life and know details of my health or my day to day health and symptoms. So it's no surprise that I have very little patience and a short fuse with such people.

I don't have the energy nor the patience to teach an adult how to empathize or how chronic illness affects one mentally, emotionally as well as physically, especially when it's not a sincere interest. I'd rather maintain my privacy and steer clear of my health as topic of discussion. I've encountered several people like this and I don't trust individuals with such behaviors. There are people who will use knowledge about someone's health and chronic illness to manipulate the person, others involved with the person or a situation with such personal information. We must especially be weary of this with employers. Recently I had an individual ask about my PTSD and they didn't understand how I could have PTSD now when my physical health has been stable. This person was also trying to use my health as a tool for religious debate and manipulation. So I'm confident that this person belongs to the last group. It doesn't take a psychologist to understand basic tenants of PTSD as long as they know a summary of what PTSD is.
 Simply, PTSD is the mental effect of a traumatic event causing an individual to have depression and negative stressful symptoms that are triggered by the trauma experience being relived. Such symptoms include night terrors, severe anxiety, fear, flash backs, emotional numbing and avoidance. Most people have a basic understanding of PTSD due to the prevalence among war veterans. Therefore, I find it hard to believe that an educated, aware adult doesn't have any reference to PTSD to draw from, especially if that person has a capacity for empathy.

My PTSD symptoms have subsided in frequency and severity over the years due to counseling and medication treatment. I don't believe that an individual ever truly stops having PTSD, just that symptoms can improve as well as better coping mechanisms may be learned and utilized. Although my health is fairly stable now and I don't have as many regular invasive tests and procedures, when I am placed back in that medical environment and those situations I begin to experience those same PTSD symptoms that I've had before although now I'm better equipped to cope with the situation so that the symptoms aren't as severe or debilitating as they were previously. But I'm never rid of it all and sometimes without provocation I begin to have symptoms again. I have to be cautious of what I watch, read, listen to and even what I think because I am easily transported back into time to any one of those traumatic medical experiences and am reminded of it all again. If I'm not cautious, I'll quickly be reliving the traumas. I'm so in tune with the pain and those memories are etched into my mind so deeply that seeing or hearing others' pain is physically felt on my body.
I also believe that one is never truly free of depression completely. A person may stop having depression but I've found that after having depression, one is much more susceptible to have depression again at a later time when under duress. I've found this also occurs with suicidal tendencies. Once a person has become suicidal, even after no longer being suicidal one is much more likely to experience suicidal ideations when under duress. It's as if once that those doors are opened, they're easy to open again even if not intentionally.

I acknowledge that these can be difficult things and notions for others to understand.    Chronic illness runs in my family but it's still hard for my parents to understand how deeply I've been affected by my health even though my parents are better able to relate than most. My husband has a hard time understanding my morbidity, how warped my mind has become due to such traumas. Yet they empathize and support, they listen and they show that I am understood and accepted. A close friend with similar health issues probably knows me best as he better understands the mental effects during his years of medical traumas than anyone else I know and is as warped as much if not more than myself. Most people have capacity for empathy and if they don't you are better off befriending someone who does. Without empathy, there isn't room for a true friendship - only a one sided benefit.