Sunday, December 27, 2015

An Open Letter to Medical Professionals

Everyday we touch the lives of others, whether it's an encounter that's so brief we merely notice it or an ongoing relationship through the years. No encounter is too small. For good or bad, our interactions can be very impactful upon another. Encounters with medical professionals are no different.

As a chronic illness patient, I am always nervous about encounters with my providers - doctors, nurses, technicians - as you hold great power while in your care. Those of us with chronic illnesses have countless encounters and experiences that scar us or lift us up during our medical trials. We constantly wonder if our providers will treat us with care and compassion or will patronize and ridicule us for our needs and fears. Unfortunately, chronic illness patients are far too familiar with both experiences.

Poor experiences with providers multiply our already existing fears. Chronic illness patients have encountered it all. Coldness or warmness, we notice how you look at us, whisper about us, and care for us. We're usually already on high alert, many of us have been scarred from years of testing, procedures, and whatever else the hospital typically holds for us. I developed PTSD during my first year of hospitalizations and surgeries. My entrance into a hospital capitalizes on my PTSD. It cripples me, fearful and suspicious of providers until my trust is gained. I've been ridiculed by providers for the coping techniques I utilize during procedures. I've been patronized by providers for my fear and low tolerance of pain. My death curdling cries for help have been ignored with snide remarks, my life placed on the line of an ego.
When we have a positive, helpful encounter it lifts our spirits in the midst of some of our darkest times. During the course of a year I had multiple stays at my local children's hospital. Although I don't recall many memories from this time and the ones I do recall are not pleasant memories. However, one memory stands out amongst all the others. The memory of one of my nurses has remained with me for 20 years. He treated me with great kindness and understanding. I felt safe in his care, particularly during a time that I was angry and mistrustful from a year of unceasing pain and medical traumas. His impact was so great upon me and our patient - provider bond so strong that my parents and I attended his wedding a year after my hospitalizations ended. His appearance and our interactions are hazy within my mind, but his influence in my physical and mental health during that period remains with me. The core of our interactions remind me that there is a light, even if small, that will help to guide us through darkness.

Fast forward six years later to my second year of multiple hospitalizations. As a young adult, the capacity for my memory has improved since my childhood hospital years. I am reminded of 4 nurses and technicians who aided in my emotional coping during my physical recovery from surgeries, poor health, and countless procedures. I underwent a full round of hyperbaric oxygen treatments and was cared for by two technicians whose humor and compassion actually let me look forward to my treatments. I was distracted from my worries, fears, and medical issues during the long treatments confined in that chamber. And when I returned from a procedure I often would find a technician hiding out in my room during their breaks ready for more laughter.
Although I liked most of my nurses, two stood out from the rest. One of my nurses was able to recognize me by my voice from repeated hospital admissions even before looking at his patient list for the day. His daughter would visit me to help me wash my hair. I looked forward to her visits as one of the most refreshing experiences during my prolonged hospitalizations. Another nurse was engaged to my anesthesiologist. During my many trips downstairs from my 10th floor hospital room to the lower levels of the hospital for my procedures, my nurse and anesthesiologist would have me pass along messages to the other. These messages always provided the three of us with great laughter and smiles and were vital in distracting me from my nervousness about each procedure I was about to undergo.

In dealing with our chronic illnesses, we've spent far too many days in the hospital; we've spent birthdays and holidays there. The hospital is not a fun place for us to be. We don't want to be there. In fact, we dread the hospital even if it's only an outpatient visit. We try to focus on the good experiences. The times we actually are able to laugh amidst our physical and emotional pain.

The care you take in your medical care greatly affects your patients. We notice when you're having a rough day but try to hide it from us, trying to not let it impact your care. Instead finding moments to laugh with us, give a reassuring hand squeeze, a sympathetic ear. We notice when you're exasperated with us, ready to escape from our room and get back to your home. We realize you have a long, hard day. So do we though. We aren't trying to make your day harder, we just want to feel well enough to return to our homes as well.

We find worry and fear in the harsher moments. On your bad days, those tiresome long shifts remember we bond with many of you, finding shared interests or strength in your compassion. We're looking to you for help to get through our stay. Your care makes a difference in our lives - now and in the future.

Saturday, December 12, 2015

In The Stillness

I typically find myself anxiously awaiting the new year and the changes it brings. A freshness and newness to the staleness of daily life. New challenges and goals set forth with endless possibilities. The excitement can be overwhelming.

But not today. Today I just want stillness. I want to savor today's moment without the past lurking over my shoulder or the future calling for me.

Today I'm devoid of feeling, of stress, and worry. My soul, battered by the barrage of life's daily circus, longs for solitude.  No longer racing with a myriad of thoughts, my heart quietly beats and my mind lingers amongst itself in a somber atmosphere careful to not break the stillness.

Today I rest my tired body and soul, with eyes closed as I listen to the sounds in the distance; shutting out the demanding voice of life and instead merely existing. Now is not the time for continued self analysis in a constant state of self discovery and transformation. Nor is it time for tackling the never ending duties required for living. No, it is a time for a stillness that allows recharging for the mountains that lie ahead. There is much work in reaching the summit. Battles for passage and testing of strength and fortitude. There is much to be lost so that much may be gained. It is an exhausting battle.

Tomorrow is the day to let my battle cry ring out from my chest, from my soul. A battle cry to accept nothing less than the best of myself. I will take the hardness of life and I will create, forge, and transform it into survival and light. It will etch its name upon my soul. I will become it and I will know no difference.

But not yet. Today is the day I take for myself, away from the battle scene. I let the stillness wash over me, soothing my spiritual aches. Tucked away in a quiet corner of the world. I question myself not, I search myself not. I simply be. I be in a world of violence and beauty; a world of demands and gifts; a world of damage and healing. Tomorrow I fight. Tomorrow I climb.

Wednesday, November 25, 2015

Finding Gratitude

Finding gratitude for what life throws at us isn't always an easy task, especially for those with chronic illness. The daily fights for productivity and survival against a chronic illness often leave us physically and emotionally exhausted with little left over at the end of the day for much else. It isn't uncommon for us to feel as though the world is against at times, that we are being punished, that there is no end in sight. We tend to forget that every moment, every trial has something to be gained from the experience.

Gratitude may be found in the smallest of details, tucked away and overshadowed by the stress and chaos that is life. Our darker moments challenge our ability at gratitude; coercing us to focus on our trials and discount the positive, the strength within us that carries us through, and our own progress. Even with distractions, if we look close enough we can find a bit of gratitude shining through the cracks of the darkness.

During my darkest moments of this year my soul was breaking. My turmoil left me feeling terrified and buried alive. I was suffocating from the dark's heaviness. At the end of the passage, my eyes began to focus while I pieced myself back together, I saw the light. It showed me that I survived. I grew. I was becoming. The light was there the entire time, waiting for me to notice. I focused on my own darkness rather than looking for the light. Our default is to focus on our trials. It is far more difficult to shift our focus to find the light.

I look back on my life and I see the light shining brightly through each dark moment of my health issues that left me near death and the debilitating bouts of depression and PTSD. Without these moments, my life would have followed a different path. Guided by my own health experiences, my education and career paths have focused on the medical field and how I can help others with their own health issues. I'm grateful for the paths I'm following; without the darkness of my health challenges, I would be on a different path and I wouldn't be who I am presently.

This gratitude was not easily found though. It would take years before I would see the goodness of my chronic illness. It can be challenging to see the purpose in the darkness; we are left feeling frustrated, defeated, and tormented at times. I held onto my anger, resentfulness, and pain of chronic illness for far too long. It robbed me of appreciation, gratitude, and happiness. When we begin to release ourselves from the bondage of harmful feelings, we allow ourselves to discover purpose through the light.

You may be going through a distressing time yourself or remain haunted by past experiences. It may be difficult to understand at this moment what the purpose is of your trial and to appreciate the darkness. In the quiet moments of the day let your mind take a moment to reflect upon the goodness of your time. It may be small, but the goodness is there waiting for your acknowledgement and gratitude.

Tuesday, November 3, 2015

Routine Readjustments

This year has been a monumental year for readjustments in my outlook and coping of mental and physical changes. I have battled changes in my health resulting in an unexpected hospitalization after an 8 year hiatus from the hospital, medical testing resulting in no answers or real solutions to new chronic symptoms, and a mental and emotional reality check resulting in a major transformation of my mind and spirit. It has been a whirlwind of a year!

I am reminded of these events and their power within my life as I prepare for another follow up appointment with my GI doctor. I anxiously await this opportunity to further discuss the possible cause of my symptoms that are reminiscent of delayed gastric emptying. After my hospitalization this year I began experiencing a gradual increase of symptoms and severity - a mix of severe abdominal pain and nausea with occasional vomiting. After trying medications and undergoing further testing I am left with no clear diagnosis for the cause of my symptoms. During my second ER trip I was discharged with the diagnosis of delayed gastric emptying yet after another upper EDG and a barium x-ray I was found to not have any difficulty of my stomach emptying. Bentyl and Carafate medications are aiding in the management of the abdominal pain and reducing the nausea. These issues have not been resolved but are more manageable although the nausea remains more of an issue than I would prefer. As I await my doctor appointment, I've been instructed to maintain a food diary in hopes of pinpointing a culprit of the symptoms. I've realized that when my portions are too large and when I eat sweets I tend to have increased symptoms. And yet meat and vegetables are just as capable of producing severe nausea as well. Such variations increase the difficulty of adjusting to and understanding my health changes.

When I was diagnosed with a degenerative joint in my neck last year, I had a difficult time accepting that I would have life long neck pain. A year later and my neck pain is now a normal everyday experience that I live and work around so that I may continue to participate in and enjoy activities. I had to readjust my thinking and my attitude. I had to stop feeling sorry for myself for having to cope with another chronic health issue. I had to accept and move on or I would forever be plagued by the weight of this chronic condition. And so I am faced with the same requirements for readjusting to chronic nausea and abdominal pain. Hopefully my doctors and I will discover the solution for my symptoms but until then I'm learning what I can do to help reduce and manage my symptoms.

With chronic illness we are prone to ongoing fluctuations in symptoms and the addition of new symptoms as we are faced with a roller coaster of changes throughout our years. Learning to ride out the twists and turns means we make readjustments thereby allowing these changes to become our new norm. It's common for the readjustment period to last a fair amount of time and after we finally become accustomed to our new norms we are once again faced with new changes requiring all of our attention and focus.

With the aid of medical providers and our own self advocacy we are able to work towards identifying and establishing strategies to manage changes to the best of our abilities. The process of readjustment tends to include a trial and error basis as we learn what works best for us and what doesn't. With each step in the management process we further enable ourselves to adjust and learn new ways of coping, gradually ceasing the mourning of how life was prior to a change and instead embracing how we can continue to live. It is through this process that one day we come to no longer know any different than our new norms. It is on this day, we are finally living and living joyfully once again.

Sunday, October 25, 2015

Feeling Your Heart

Life is a confusing, beautiful mess full of opportunities for both joy and heartache. We can take many paths in our navigation through what life offers us yet we often choose the most complicated route. We consume ourselves with fear and worry about the dreaded what if's that are never entirely answered properly as our imaginations our set free in a whirlwind of confusion. Life is not necessarily simple in our experiences but I believe we can simplify our paths by merely feeling our hearts.

Tuning into our hearts and what we are feeling can be called many things: inner voice, intuition, gut instincts, faith, etc. Whatever your preference for terminology, paying attention to the words of our hearts and souls seems to make a difference. We allow ourselves to obtain peace and comfort as we make life decisions and let go of anxieties when we listen to ourselves.

Listening to what our hearts say can only occur when we are honest with ourselves - free of preconceived ideas and intentions. We must open our minds and ourselves to all realities, not just what we want. It is easy to confuse what we want with what we need, whether it's physical, emotional, or financial. We all have ulterior motives to obtain what we want even when dealing with ourselves.

As we begin letting go of that which holds us captive through fear and anxiety, we learn to make the best decisions we can with the information we have at the time. Part of this information is knowing how we feel about a situation and about the options available.

We listen by identifying what we are feeling and allowing ourselves to feel those feelings rather than rushing through one feeling to the next. This helps in all realms of life whether it is releasing fear and anxiety, making a decision, resetting ourselves spiritually, self-discovery, and coping with life. It is particularly useful in emotional healing from grief or trauma as we cope and adjust to a life change. Not allowing the process to flow naturally and completely can be harmful as we can delude ourselves in believing that which is false within us. Rebound relationships, incomplete grieving, and yoyoing of depression and anger are common examples of rushing this natural process.

Let us not hide from our feelings, viewing them as a weakness or an inconvenience. Rather let us honor our feelings for what they are - a gift that lets us experience life in the fullest. Joy and heartache are neither to shrink back from - both lead us to the depths of unimaginable feelings and experiences that ultimately try to teach us gratitude and strength.


Thursday, October 15, 2015

Letting Go

On the drive home, surrounded by darkness and music, I felt a peace come over me and in that moment I recognized the novelty of this peace. It was a peace I haven't felt before in my lively, waking moments. I felt lighter, no longer bogged down by moments of the past - whether recent or long ago. I finally understood the feeling of having no regrets. I had somehow, magically let go.

This year has become to be a time of teaching for me as I continue along the path of transformation as a fire storm scorches my soul to reveal new layers. With a new sense of strength and fierceness, I am finding challenges for myself to push past my limits. I am rediscovering and redefining myself. This must be a new layer, a new level reached - I thought to myself as suddenly the stars shined brighter and the night air felt crisper than they had mere moments before. I no longer cared about all the mistakes I had previously made. Mistakes, big and small, that I lamented over for years at a time. As a soft hearted, highly sensitive person I tend to spend an exorbitant amount of energy and time reviewing details of my life and interactions. Replaying moments as they occurred and the innumerable various scenarios that could have occurred with different actions or decisions. No longer was my mind shackled with such worries. All that mattered now was this moment on - my future.

Too often we worry about what we should have done or what we wish would have happened if only we had the foresight to know the outcomes of the situation. My parents taught me to make the best decision I possibly can with the information I have. We simply need to do our best. It may not turn out to be the right decision but it is giving the moment our best that is important. I believe in this advice even when I haven't followed it closely as at times I knowingly made mistakes and other times I failed to let go of my wrong decisions. 

There is much more to life than our regrets. I once held the belief that to live without regrets was to not care about our actions and the consequences. I have learned that living without regrets is relinquishing the control regrets may have upon us. We can become full of regrets that cripple us - filling us with anxiety, fear, and anger. Fear and anxiety of future decisions and anger toward our past decisions. These reactions are not healthy but are stifling of growth and acceptance. We must learn from our mistakes and our failures so that we may make better decisions in the future. This does not mean we are required to carry the burden of those mistakes once we have learned from them. Rather let us live and learn then let go. We are unable to change the past no matter how hard we wish or how long we lament. Let us direct our energy to the future and the goodness that is waiting for us.

I do not know how I suddenly came to this freeing moment. It was not a conscious decision. It merely swept over my mind and body in an unforeseen wave. Is this not the way most epiphanies come to us though? When we let our minds freely wander, our subconscious to come to the surface without inhibition. Allowing access to the greatest depths of our minds and souls - to reconnect within ourselves. Thinking without intent, without reservation, without prejudice. These are the moments that grant me insight and revelations.

I like to take a moment, preferably in the sanctity of the outdoors. Feeling the grass under my feet, the dirt between my toes. Closing my eyes and raising my face to the sky, feeling the sun shining down upon me. Deeply breathing in the air, as it fills my lungs before slowly exhaling. Clearing my mind and focusing on the physical sensations of the world around me and my body. My eyes will begin to feel heavy while closed, my mind drifts in and out of consciousness. I become relaxed, connected to my spirit. The sounds around me grow faint in the background as I listen for the still voice deep within me. I remain in this trance like state until my spirit releases me and sends me back into the awareness of the physical world around me. I awaken refreshed, free of stress and worries and sometimes with a new revelation. I encourage you to follow this or your own style of meditation and discover what is lying under the surface.

Tuesday, September 29, 2015

Protecting End of Life Wishes

One of the most important things we can do for ourselves is to discover how we want to live. However, this understanding not only includes how we walk this earth but also how we leave this earth. There is great honor in being privileged to walk the journey of life alongside another person and in respecting their journey.

Recently my beloved great uncle passed away. As my parents, myself and others walked alongside him, he shared his life and afterlife wishes with us. He did everything within his earthly power to ensure his wishes were known and established prior to his passing. In spite of his insistence and clarity, there remains individuals determined to undermine the wishes and efforts of my great uncle. His wishes and efforts that allowed him peace of mind for leaving this earth.

The struggle to protect his wishes emphasized the deep need for end of life planning. Such planning is not age dependent; it is life dependent. I began preparing my own end of life planning during my teenager years and regularly update my documents to reflect any changes and maintain currency throughout the years. Our life journeys may end abruptly and our loved ones who walk alongside us may realize and respect our wish but without legal documents stating and supporting our wishes, there is risk for obstacles in spite our life companions best efforts to honor us.

When discussing advanced directive and durable power of attorney forms with clients, I often am told "my family knows what my wishes are". Unfortunately, verbalizing wishes is not always enough to ensure our wishes our honored. Our doctors do not and are not always allowed to honor our previously verbalized wishes without legal documents stating our wishes.

End of life planning has many caveats for exploration and completion. It is more than simply verbalizing our healthcare wishes in broad generalities. It includes establishing someone to make decisions on our behalf if we're unable to do so ourselves - financially, medically, and physically. It includes directing the distribution of assets, establishing care for dependents, determining medical wishes and service preferences upon our death.

The laws and processes surrounding end of life planning and ability to establish ongoing legal matters, such as guardianship for a dependent, vary from state to state. Thus it is essential to thoroughly obtain and understand what is allowed and required within your area of residence.

Leaving our life companions without legal protection to honor our wishes leaves the door open to not only our wishes being dishonored but also unnecessary stress, legal filings, difficult decisions, potential conflict, and costs that all can be abated by completing end of life care.

When we walk alongside another person we are privy to sharing deeper aspects of ourselves while gaining insight and wisdom not learned elsewhere. This is a mutually shared benefit as the walkee and life companion learn and share their needs, wants, fears, and wishes with one another. It is when we let our egos fall to the wayside and instead listen to what another person needs from life that we are allowed to share one of the greatest gifts we have - respect and honor.

For information on medical end of life planning - Advanced Directive, Durable Power of Attorney, and Do Not Resuscitate Orders - visit here here. For information on estate planning, visit here

Thursday, September 10, 2015

Let The Fire Burn

The last seven months have been an incredibly difficult, transformative, and freeing period that is truthfully just starting. For when such a process begins, it can't be confined to a mere few moments in time - not if you submit yourself to the process. For when you submit, the transformation truly begins and it can become a lifelong, marvelous journey.

I fought a new bout of depression this year; that old friend of mine that likes to seep into the depths of my mind and heart and squeeze my very life in its cold, dark claws as it whispers to me, gently bidding me to join its ranks of peace and tranquility. A peace only found in the abyss of death, where there is absolute nothingness. A nothingness that consumes you to the point that there is no pain, worry, or grief. It's a peace that I once was honored to experience briefly and so it calls to me, reminding me of a time long, long ago.

But as I struggled against its calls, strong though they may be, I resurfaced. And not only did I resurface but I found a new appreciation for my life, for my time on this earth. I found a strength within me I never knew was there. A strength that is greater than that which I harness for and through my health battles. A strength that is beyond the physical. All my battles have primarily been against the physical realm. Fighting for my physical life, my physical body against the physical effects of my rare disease and the tolls it takes on me.

I have been pushed past my breaking point yet once again, only this time it wasn't because of my health. I was thrown into a fire and though the flames continue to surround me, I am beginning to see the traces of smoke filtering in amongst the flames. In being pushed to my limit by multiple individuals and situations this year, I'm being transformed and am continually finding new limits, horizons, and restrictions to break. I am by no means done with this personal growth, this new found freedom. The flames continue to do their busy work of burning my outer layers to allow my soul within to shine and to shine brightly. And thanks to these flames, I am happier with myself and more free than I have been in years.

These flames schooled me in dealing with what life and others may throw at you and how to stay afloat. I'm learning to let go and not worry. To take care of myself rather than waste my time and energy on worrying about how others are going to affect me. That is not the same as no longer caring about others. Rather, it's a freedom from the restraints we often allow others to place upon ourselves.  No longer allowing others to control us and our actions and moods.

Instead of trying to figure out what life will be like and what the right direction to take is because of someone else, try setting your own life goals and going after them with tenacity, intensity, and fierceness. No longer letting another control your life's direction will break you of the restraints and life will realign. You will become focused. With that focus, you will discover what is most important to you and establish your own standards for living. Finding yourself, what you deem important, and the satisfaction of independence in your pursuit will lead you to intense happiness and freedom. Levels of which you wouldn't know when you allowed yourself to cower to the standards of others rather than your own.

Realize you can and you will survive on your own without others. I never thought of myself as an independent woman until this revelation was nearly forced upon me. I became overfilled with strength and pride with such a powerful revelation. A lot of us see ourselves as independent solely on our ability to financially provide for ourselves without assistance from another. Although this is a caveat of independence, it doesn't end there. There is so much more to being independent than simply being financially independent. Do you feel able to survive the loss of those dearest to you? I've survived the death of countless individuals I greatly loved and admired but what about the physical loss, the emptiness that can be summoned when we lose someone physically and emotionally though they remain living? My world felt as though it was crashing in around me with such non-death losses. I felt as though I had lost a part of me and perhaps I had in the process of giving a part of me to those I have loved. When forced to the brink though, you will learn you can survive any loss regardless of the severity and difficulty. This doesn't mean you become cold-hearted. Far from it, you simply are able to harness your inner strength rather than solely relying on the strength of others.

No longer care what others think of you. When you lose respect for someone, that person's opinion no longer means anything anyway. Don't waste yourself on those who have already lost your respect. Cherish those who are true to you - those who are supportive, loving, caring, and there with you through the brightest and darkest times of your life - not those who try to create dark times, tear you down, harm you with their malicious intent and manipulations, leave you without explanation. Don't let yourself succumb to the power of others, especially when it is a harmful power. You don't have time for that nor should you.

Don't take the dangerous, personal issues of others on as your own. People will attempt and succeed at betraying, manipulating, deceiving, and harming you. The reasons for others to inflict such pain on another is deep seated within them. Stop trying to decipher the reasons behind their actions. Their reasons don't need to make sense. Their reasons are just that, theirs. Not yours. Do not take on more pain simply because another is engaging in harmful behavior towards you.

Do what you've longed to do but was too scared to commit to previously. There is immense freedom in letting your inhibitions go and doing what you've always wanted to do. Perhaps you refrained yourself because you worried about judgment from others, didn't consider it proper, or didn't think you had it in you to attempt much less complete. Forget that and jump in. I've learned that there are personal challenges our spirit is drawn to for whatever reason. Your spirit gravitates you toward such challenges and won't let you forget about it - even if you bury it for years under fear and inhibitions. If you feel that unceasing tug, your spirit is speaking to you. Sometimes it speaks to you softly, the action may be small but it appeals to you at a deep level. Other times it screams at you out of no where, forcing your attention even if you remain refrained. Let your shield down, accept a self challenge, and let yourself be free.

Whatever the source is for your fire, it will be a long process of adjustment and coping as your outer layers become scorched and the pain sears your soul. Turmoil presents itself with a variety of emotions and stages, often sending you bouncing back and forth amongst them all repeatedly before you are finally able to find your footing enough to begin to walk a more level path through the flames. As the outer layers begin to crack, forcing you to think your mind will crack as well you will want to speed along the process and jump to the end simply to lessen your pain. It's okay that this is a lengthy process for it is through this lengthy process that you are provided the opportunities to discover more about yourself, healing and freeing yourself from the captivity of the world. The pain will be unbearable at times but the rewards of true independence and freedom are vast. Let yourself fully feel all your emotions. Surrender to them as you claim the strength that lies deep within your being. Strength you had yet to harness before and burst from the flames as the warrior you were destined to become.

Tuesday, September 1, 2015

Not On Faith Alone

Life is a beautiful creature that ebbs and flows between the joyous moments and those of darkness and difficulty. All moments of life have the potential to become a positive, transformative experience as we navigate our way through each moment learning lessons, gaining wisdom and insight, and strengthening our minds and souls. Our successful navigation through life's most difficult times aren't contingent upon faith alone that we will resurface. Rather it is the combination of faith and action that brings us forth from the ashes and sets us free. The speed at which we break forth from the shrouds of darkness is dependent upon our own level of involvement in our life's path and recovery from life's struggles.

I have been coping with periodic bouts of depression since my first surgery 20 years ago and I have been struggling with a particularly long episode of depression for the majority of this year. Although I feel uncomfortable proclaiming that I have successfully found my way through this episode at this point, I am noticing improvements albeit small at times and greater at others. Depression is a roller coaster, taking us on great highs on our good days and great depths on our bad days. The better days are increasing in number and I have been able to start tapering off of my anti-depressant medication. I am in the process of scheduling counseling sessions as well. My process this year has been backwards as the combination of counseling and a regiment of anti-depressant medication is actually clinically shown to be more effective than one method by itself. Sometimes though the darkness is overwhelming and we are only able to handle and function so much before we are overcome with the heaviness of it all. To protect ourselves, sometimes we must tackle one issue or treatment at a time as we obtain a greater grasp on ourselves and the difficult situation we are facing before we are able take additional action. Making the effort though to tackle our struggles is a necessary action.

It is with this action that we are able to see how the pieces of life may fit together even when individually the pieces don't appear to fit or ever will fit. Often the pieces of life require our action to alter individual pieces or moments so that each may find its connecting piece, without our intervention and effort we merely prolong or halt the process of connecting together moments to allow for change within a situation. Looks can be deceiving until a combination of time and action help guide more pieces together, allowing us a clearer glimpse of the larger picture of life. With each glimpse our faith is renewed and our action gains momentum, furthering the cycle of recovery. Yet without this action, our recovery remains stagnant as we passively wait for the darkness to lessen and life to improve itself. We cannot idly sit by waiting for life's greater days without our own participation in the process and our life. Passivity allows life to happen to us, not us happen to life. Action with the faith that there will be better days empowers us to live life zealously and actively.

Stop waiting for a situation to change, for life to improve, for that one day. Your faith for those better future moments is screaming out for your action to join and help make that change. Life is ever altering the course; in order to succeed at our dreams and goals we must change with the course. Find new footing, modify our goals and efforts as needed, and play on.

Monday, August 24, 2015

Appreciating Death

Through my own near death experiences and years of losing loved ones, death has become a far too familiar part of my life. Others view me as having a death orientation and perhaps this is true. My own health scares have left me unafraid of the passage of this life into the next realm and I've become skilled at saying goodbye to those I love. One can't help but gain this skill when the majority of your friends and acquaintances are those with chronic illness - groups I've come to surround myself with personally and professionally. I can't count the number of family, friends, and patients I have lost over the years since I was almost 2 years old.

I traveled across country with my parents to say our final goodbyes to one of my great uncles. We resumed our yearly visits 6 years ago and as my great uncle's health began to decline and he transitioned from his own home to a nursing home, we began preparing with him. He was becoming closer and closer to his 100th birthday. He was tired and he was ready. Each year we wondered if he would live to see his next birthday and each year he continued to surprise us as well as himself with his longevity. The time was finally nearing. We surrounded him and attempted to comfort him during his bouts of pain. We voiced our love and understanding to him, letting him know that it was time to let go. As we parted with him on the second night, I told him that I hoped he would find peace that night. He turned his head and looked up at me with a knowing look in his eyes. I smiled, fighting back tears, and told him how I loved him and lightly kissed his forehead one last time. That night he passed into the other realm. At age 99, four months shy of his 100th birthday, he finally gained the peace he desired for so many years.

Death is a learning process for those preparing to enter the other realm as well as for those left behind. Someone facing impending death over a period time is given a gift of self understanding - learning the depths of one's fears, hopes, regrets, personal beliefs, and gaining wisdom and insight into the meaning of life and what is truly to be held sacred and important in life, rather than the fluff. This can be a time for intense self reflection that doesn't necessarily come easily to everyone until forced to consider one's inner depths.
No matter how many times we go through the process of losing a loved one -  saying our goodbyes or worse yet the inability to say goodbye due to no forewarning and contributing or participating in the funeral services - it never becomes an easy process, simply a familiar process. We know what to expect, we learn how we obtain closure and grieve, and we learn tricks to make the process and funeral arranging easier and smoother. We learn our own preferences for our own services and what is needed for arrangements. We learn about ourselves just as much as we do about others during such proceedings. Individual personality traits become transparent - whether good or bad traits.

Through death, we are able to appreciate life. I gain closure as I grieve through the sharing of life stories of my loved one. Through this process, I'm reminded of the wondrous times of my loved one's life and fond memories together. When I think of my loved one, I don't think about their death instead I think of the stories shared.
When one of my aunts who helped raise me unexpectedly passed away, I don't remember her death and service so much as I do the weeks and months following her death as I spent multiple evenings throughout the week with my parents, aunts, and uncles sharing family stories as we sorted through her belongings. As my grandfather's body gave way to stomach and esophageal cancer, I spent as many days as possible with him. When I recall his passing, I'm not reminded of his death but of being near him, falling asleep next to him watching television in his big over sized bed like I did so many times throughout my childhood.

Death and the events following one's death are not occasions for overwhelming sadness but rather a time to celebrate and honor our loved one. A time for family and friends to come together and honor the individual's life with stories so that the individual may live on in the hearts and memories of those remaining.


Monday, August 17, 2015

Travel Stress

I thoroughly enjoy traveling, learning about the local culture and exploring the sights. I long to travel the world, whether it be state, country, or continents and I have my own travel bucket list I'm completing. Yet the tolls of travel are becoming more evident over the years.  Driving 1200 miles over the course of two days was once tiresome but manageable. Now I plead for 3 days travel to reduce travel stress. Traveling 3 hours via vehicle to arrive at a destination for a single night has become an event I dread as I'm left requiring a day of recovery to feel rested again from such a relatively short distance.

My parents and I traveled to visit my great uncles and tend to the beginning of the last days of my eldest great uncle. We decided to fly due to the stress upon us from our 1200 mile drive. Even with less than a 5 hour flight, the day was proving stressful enough. Our plane arrived at nearly midnight, our one checked baggage hadn't made it on our plane but was following behind us on the next flight. A flare up was starting from my lack of sleep and rest and sharp pains began stabbing at the back of my knee each time I took a step. We decided to hold out during the hour wait to obtain our luggage and then was tasked waiting for a rental car and determining if we would be able to check into our hotel a night early while correcting the hotel's error for multiple reservations. After all was said and done we entered our hotel room around 2:30 am to sleep 4 hours before heading to visit my great uncles. Needless to say, we were all exhausted and requiring rest before too long.





What's the best ways to combat travel stress?

Firstly, starting your trip rested and energized makes a difference. Completing necessary planning and preparations for your trip beforehand allows for a more organized, less stressful start to your day. We need this energy and let's face it, most of us are already struggling with energy levels so we don't need to start off further drained than usual.

Know how travel and food will affect you. I know I do better with reduced fluids and food intake during periods that provide limited restroom access. Struggling to avoid restroom necessity when I'm unable to access a restroom is physically and mentally hard on me as my body becomes sore and my anxiety and frustration levels increase. Correctly timing my fluid and food intake provides increased freedom when I need it most.

Schedule your travel to allow for departure and arrival times that are optimal for your well-being. Do you function better early or late in the day? When do you usually start to run out of steam? Allow time for rest breaks to regroup, stretch, and walk to prevent blood clots, achy joints, or lodging for sleep to prevent exhaustion and decreased immunity. Make arrangements ahead of time if you fare better with handicap accessibility or assistive devices. 

Eat healthy during your travel and stay at your destination. It's easier to fall into the fast food traps while traveling but your body and mind will thank you for avoiding such traps. Fast food and other unhealthy foods leave us feeling sluggish. 

Take your medications to help keep you on track. It's easy to skip or forgo medications when our typical routines are altered. Consider adding immunity boosting supplements to your medication regiment after discussing it with your doctor. Zinc and Vitamin C are great immunity boosters. 

Plan activities that fit your activity level. Jam packing your days with various activities can give you great memories but leave you exhausted, wanting a vacation from your travel and time away. Give yourself some relaxation opportunities. 

Travel is a wonderful privilege and we are able to enjoy our travel experiences to the fullest when we take care of ourselves. So get out there and see the world, it'll change you!

Travel changes you. As you move through this life and this world you change things slightly, you leave marks behind, however small. And in return, life and travel leaves marks on you. Most of the time, those marks - on your body or on your heart - are beautiful. - Anthony Bourdain

Saturday, August 8, 2015

Self Care

When we are presented with moments and events of extreme emotional distress and overwhelming stress, we place ourselves and others around us in danger. Perhaps it is not a life threatening or immediate danger but the stress carries over from ourselves to others as it able to affect those we encounter. Stress quickly and easily will take its toll on our bodies, our minds, and our relationships.  It becomes a poison seeping through ourselves into the air, tainting every aspect of our lives. Daily functioning is sacrificed, relationships are strained, and physical symptoms begin to appear.

Last week was a particularly difficult time for me as my mind was unable to control my emotional distress, no longer could I hold back tears and anger, the depression pushing for a release. I had difficulty focusing on my tasks and responsibilities at hand. I feared my emotions and the sense of losing control. My mind and body were becoming exhausted from the burden. My mind began to create minor issues for me to fixate on rather than the source of distress. My mind was frantically trying to protect itself from danger and no longer would I be able to forgo intense self care.

Self care is not always an easy task to submit ourselves to as we tend to make excuses and feel guilt or shame for requiring self care. Self care is necessary for every individual. It doesn't matter how we choose to provide ourselves the gift and necessity of self care as long as we provide ourselves with it. If we fail to do so, we risk greater damage to ourselves and those around us. Our minds cannot continue without self care, it will lead to a worsened state of mental and physical health.

My self care rituals vary depending on resources, the source of emotional distress, and options available. At times socialization is most valuable and others solitude is preferable. I reached out to friends for support and activity, which helped distract and process feelings but as the pressure continued to mount I knew I required solitude and peace to allow for self reflection and serenity.

I feel most serene when I am within nature, isolated from the busyness and distraction of others. I located a secluded rental within the countryside and planned out my weekend of solitude. As I entered the property my stress and outside concerns began to fade. I let the stillness of the land enter my spirit and draw out the heartache and depression through tears and reflection. I tended to my psyche as I socialized with the farm animals on the property, engaged my creative side with skull painting, and pampered myself with my own in home spa. I was saddened as I said goodbye to the horse I connected with so much during my stay and watched the land disappear in my rear view mirror as I left the gate and turned the corner down the country road. I didn't want to leave my oasis away from the world, away from reality. But my time away provided enhanced clarity and recovery of my soul, allowing me to re-enter the world with the ability to resume daily functioning without fear.

Self care needs vary among individuals and situations but finding what makes you happy, what distracts you and helps you gain closure or take steps closer to a resolution, is key. We can all spend time watching television and vegging out but this isn't truly self care. Self care is more than escaping the world. Self care is loving yourself and loving yourself enough to do what you need for your well being. Self care is a preventative measure against harm from the effects of stress and emotional upheaval. It is holistic in its approach encompassing the cognitive, emotional, physical, and social realms. You can find a list of ideas for replenishing your body, mind, and soul here. You deserve time to love and care for yourself. Never forget this.

Thursday, July 30, 2015

Helping Someone Who's Hurting

In my darkest moments I realize I need help. The pit becomes too deep, too inviting and I am at risk of being lost. It isn't always easy to open the door and reach out to someone and ask for support through the darkness. Taking that step, feeling dependent on another, and the burden of verbalizing what is wrong when there is little energy left can be daunting and seem almost not worth the ordeal. When I grasp for someone's help there are some words and actions that push me further down into that pit, leaving me feeling hurt, angry, and more alone and the door shuts in my face as I no longer feel comfortable opening up to that person. When someone reaches out to you, that person is trusting you with their hurting soul. You never know when you may be the last person they reach out to, exhausted from the pain.


There are three things that I think we should never say in response to another when that person is hurting and seeking support. Such statements are very harmful and close the door to open communication and support as what is meant to help change someone's mood and thoughts instead dismisses and invalidates that person's experiences, feelings, and thoughts thereby creating the opposite intention and worsening the situation.


1. There Are People Worse Off
Sure, there's someone always going through something worse but that doesn't make the pain one is feeling any less deep. If such a statement is going to be productive and helpful for an individual, the individual needs to be the one to come to this realization. Coming to such a realization on one's own allows one to experience gratitude for their situation versus another, not necessarily increased happiness or reduced depression. Being told that others have it worse so be happy is just like telling someone be sad because others have it better than you. Regardless of the situation or the cause or expected length of it, it doesn't mean that person is going through any less of a deeply painful time. This ignores what the person is feeling and invalidates what they are experiencing as a bothersome, emotionally difficult moment.


2. You're Being Selfish
Selfishness is a subjective label. Actions that may be necessary can be bothersome to others resulting in others to feel that one is being selfish. For example, taking time for self care is absolutely necessary for everyone but does require limiting time for others and other activities which may be hurtful to another. Telling someone they are selfish for their feelings is not helpful, especially if that person is having suicidal ideation. It can be very difficult to appreciate the effects of one's actions on others when they are fighting depression. Labeling, judging, and insulting someone during such a difficult time is not what is going to get someone to change their mood. Listening, supporting, and helping find solutions is what will help an individual with emotional hurt. Try telling that person how you feel about him/her rather than calling that person selfish for their thoughts and feelings. If that person is talking to you about those thoughts and feelings, odds are that person isn't happy having those thoughts and feelings either but needs some help to get to a better, healthier, safer place emotionally.


3. That's a Cowards Way Out
When interacting with someone struggling with suicidal ideation, telling that person that their thoughts of suicide or death wish is cowardice isn't what is going to change their thoughts or decisions. Instead, it leaves the individual feeling judged and dismissed. No one likes to be judged and what is considered cowardice is subjective so that person may completely disagree. Such a statement sends a defeating, negative message to that individual, particularly including a message of decreased self worth and failure as a person - which only increases depressive feelings.


So what are some ways to help someone with depression or suicidal ideation?


1. Listen
Listen to what that person is telling you. Most of the time when someone seeks support that person is just wanting someone to listen to them, not fix all their problems. Talking about our feelings allows us to process our thoughts and feelings so that we may work through an issue. It's very difficult to complete this process without someone to listen to us and listen to us as many times as it takes. We typically require talking it out more than once as each time we are able to sort through the pieces a bit more and learn something new about ourselves or make a step closer to resolution.


2. Empathize
Try to understand what that person is feeling and going through in the moment. When we seek support, we want to be heard and understood. You don't have to agree with the person's feelings, just try to understand what they're experiencing. Empathizing also helps us feel a sense of belonging and in turn this helps us feel safer, less alone, and more apt to rediscover hope.


3. Don't Give Up On Them
Depression is exhausting and draining on the individual with depression but is also on others who are around someone with depression. The answers always appear clearer and easier to someone without depression. With depression, the mind becomes clouded with doubt and hopelessness and it isn't something that can be snapped out of quickly. Depression takes its time and will hold on for years if we let it. The individual needs to process and cope with the issue causing depression. It is much easier to do this though with support and help from others. Try not to become frustrated with the many ups and downs a depressed individual will go through as they sort through and begin to recover from the depression. Take some time for yourself so you're taking care of yourself as well.





If you or someone you know is depressed or at risk of suicide, please reach out.
Life isn't always easy but together we can survive it.

Wednesday, July 22, 2015

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...I could...I could just do it. But how should I do it?

I enter the kitchen and pick up a knife. There he stands facing the window, his back to me. My eyes dart to the knife I'm grasping, my fingers tighten around the handle, and I find myself slowly raising the knife before glancing back to watch him. 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. If I'm fast and accurate, it will come as a surprise. I could...I could just do it.


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 deep, homicidal 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.

Monday, July 13, 2015

Relief vs Eating Disorder

A while ago, I randomly came across an article discussing the common risk of eating disorders among those with chronic illness and although not a novel idea, I find myself often thinking back upon this as a new revelation in my life. I hadn't given much thought to the link between chronic illness and eating disorders even in spite of my own previous diagnosis of 'relative anorexia'.

When I was in grade school after my first year of surgeries, my body became accustomed to not eating and so I ate very little even when I was allowed to eat freely. A consulting doctor wanted to provide me with a feeding tube and thankfully, my pediatric GI doctor stepped in and realized that my limited food intake wasn't because I refused to eat or had a desire to lose weight but rather a habit that formed as a result of my chronic ill health. I was placed upon a weight gaining diet and gained from the 80s to 100 pounds.

Through the years, particularly after my second round of surgeries, I have endured a very strong love/hate relationship with food. Food causes me great pain and inconvenience at times yet food is a necessity for survival and typically I enjoy the pleasure of eating. In spite of the pleasures of food, I still feel my very best when I fast for long periods. There are many days that I can easily fast for 2-3 days with little complaint. Not eating isn't a body image ordeal for me; the relief of not eating sometimes outweighs the pain and discomfort of eating. I feel my very best when I don't eat and when I'm underweight. I actually feel lighter, healthier, and more free without the heaviness of food and the digestion process weighing me down. And yet I realize this is unhealthy - one needs regular food intake to sustain proper health and nourishment.

The feeling of severe bloating and fullness, toxicity, and pain after eating has at times led me to finding relief through the use of agents with laxative properties, such as milk of magnesia or foods with laxative effects, or vomiting - although with seldom invocation and never with a premeditated intent such as in bulimia. Last night was such a night. I stood over the toilet and debated...do I want to vomit to relieve some of the pressure and pain or do I want choose the healthier choice and let my body complete digestion on its own. Once again, I realize this is unhealthy behavior but at times I find the possibility for relief overpowering.

Understanding the desire and need for relief from pain resulting from eating leads to understanding the fine line between relief and an eating disorder. Habits are easy to form, especially when they are positively rewarded, such as pain relief. These habits can become compulsive and obsessive in a short time as the cycle is continued. The line between relief and eating disorders becomes smaller and smaller and we can be left with greater issues than those with which we started.

It's been 20 years since the way I look at food changed and during that time my body's reactions to food have changed multiple times and each time a new set of trial and error learning commences. I don't easily accept change and often must undergo several backfire events from resisting adaptation before I will begin to alter my behavior and adjust to a new set of rules.

Adaptation is necessary to prevent further complications such as the risk and side effects of eating disorder like behaviors. It is an ongoing learning process as we gain understanding through trial and error and in discussion with others to learn from their experiences and insights as well. It's necessary to discover how our body reacts to certain foods and in what quantities as well as taking into consideration our altered digestion that presents with challenges to absorption and digestive processes. Such discovery will allow us to make better eating choices while reducing negative side effects. Yes, easier said than done. 20 years later and I still strongly resist what I know is in my best interest when it comes to eating and my food choices as I often cycle between healthy eating and overindulgence and poor food choices. Recognizing our harmful choices and behaviors is a start to changing harmful to healthy, as without recognition there is little room for change. Recognizing and understanding the struggle of one evil - pain - against another evil - unhealthy behaviors - helps us to make better decisions and realize the consequences of both choices.

Finding the balance between health issues and diets can be tricky as some diets for different conditions contradict one another, such as renal and diabetic diets yet renal failure and diabetes are often seen together. For healthy food choices and information view the following guides for ostomates and those with short bowel syndrome. Encourage and support one another among the struggle. If you think you or someone you know has an eating disorder, seek help.

Thursday, July 2, 2015

Celebrating Birthdays and Survival

Today I am 30 years old. Most people fret over reaching 30, leaving their 20s and "younger days" behind. My mind is elsewhere today as I survey my life in awe. I've miraculously reached an age I never believed I would reach. I have surpassed ages I shouldn't have passed. Like many with chronic health issues, being told that I shouldn't have survived a situation or I'm not likely to live past a certain age isn't new to me. I've heard such statements since I was 9 due to complications and medical negligence and again throughout high school and into college during a several year recovery period from my reversal and subsequent complications.

I recall lying my head on my mother's lap as she sat on the couch stroking my hair and I told her how I loved her and said my farewells. I could feel the life draining from me, peace beginning to surround my spirit. I was uncertain how many more moments I had remaining but I knew they were coming to a close. I watched her tears run down her cheeks as she gazed upon and told me how she loved me. I had never felt such peace and have never again since this time.

I was back in the hospital soon after, veins being pumped with electrolytes and blood coursing life back into me for another day. If this had been delayed in its delivery by a few more days, I wouldn't have survived. There were many weeks my doctors weren't sure if I'd live to see them the following week due to risk of heart attack or brain seizures. Over the following years my health would gradually improve and become stable again.

Due to my ongoing health crises, I came to fervently believe that I would not live past the age of 21. I held this belief so firmly that I completed all of the end of life documents and arranged the details of my funeral according to my wishes and distributed copies of this information to my executors of my will. This belief was further cemented as I began to develop precancerous polyps within my stomach and my pediatric GI doctor predicted I would develop stomach cancer by the age of 30. The treatment of which I was still unsure I would be willing to subject upon myself.

My conviction was so strong that I was left amazed when the clock struck midnight on my 22nd birthday and I was still breathing. How could I still be living? I have wondered this many times throughout my life. I have been prepared for death for 2 decades and at times I feel as though I have been teased with death and the chance for peace from my health issues, particularly on the most difficult days. I remain ready for the day of death, waiting for the day that I was told would come so long ago.

And yet I continue to survive. And survive quite well in my opinion. I had many years of struggles and presently I am battling chronic nausea, pain, and difficulty eating after a recent hospitalization. I remain standing amidst the battle. Cancer free. Precancerous polyps free.

I have learned a lot over the course of my disease and I have gained a unique understanding of myself, life, death, the world, and what Familial Polyposis (FAP) means for it all. FAP isn't a death sentence to me. It doesn't guarantee to shorten my life expectancy...it simply complicates my life. I won't know how it affects me otherwise until the progression of developments occur. FAP affects each person differently to a drastic degree. My grandfather had very little problems after he received his ileostomy until his death at age 81 from stomach and esophageal cancer due to the FAP. Others are not so fortunate and children are presenting with symptoms and precancerous polyps at younger and younger ages. Each person's story and battlefield is different though in the position of landmines. I refuse to believe I have no choice in my footing amongst the landmines though.

Please help me with my Birthday wish by contributing
and please share my wish with others!

www.CafePress.com/LifesAPolyp

Saturday, June 20, 2015

Refeeding is a Pain

I started the weekend early. Normally I try to sleep in, catch up on my rest and delay eating. The sound of my husband preparing for work kept me awake. My short to-do list for the day running through my mind. I'm awake, no need to try to force a return to sleep.

Completing my errands, I grab the largest cup of coffee the convenience store offers. Enjoying gulping down my lightly flavored coffee will help delay my solid food intake. I have my meals planned out today...even though I usually don't follow my meal plans. I'm aiming for a protein shake at noon. I'm rarely able to make my coffee last more than half an hour though. I have a food obsession and have difficulty delaying or slowly ingesting food or drink even when I know better.

I'm starting to feel hungry and my mind is reeling with possible food options. I'm unable to force myself to delay eating any further. I devour half a sandwich, the protein shake no longer sounding fulfilling. I wait, hoping I didn't make a mistake and cause myself to become sick once again. In less than 10 minutes my stomach feels full and a low grade pain begins to radiate through my abdomen. In the course of half an hour this pain may have me doubled over wishing I hadn't eaten. I hope I was able to prevent this severity by only eating half a sandwich rather than a full sandwich.

During the week, between coffee and a few snacks while at work I've managed to skip meals during the day and instead have a largish meal for dinner. This has allowed me to remain working. It's been a few days past a month since I started eating solid food again. Refusal to force an appetite resulted in my unexpected hospitalization a month ago. Now I'm caught again in a food dilemma. I am once again enjoying the taste of food and yet eating solid food causes intense pain causing me to not want to eat in order to prevent the resulting pain.

This week a former ICU nurse I work with visited with me and shared her theory that I may be experiencing symptoms similar to that of refeeding syndrome. I barely ate any food for a 1.5 - 2 weeks prior to my hospitalization and only had clear liquids for 3 of days I was in the hospital. Following my upper and lower scopes I was immediately placed on a solid food diet again without any gradual graduation from liquids to solid food. My coworker explained that immediately resuming solid food after a period of little to no food intake is difficult for the body and can cause serious health risks. Although I do not feel that I am at any serious health risks after a month of eating solid food, it would explain why I continue to have difficulty eating without severe cramping, bloating, and pain. I could understand my body having difficulty readjusting to food intake for a few days but not over a month. But then again...my body is not a normal body. My body reacts very differently to typical issues and circumstances.

My coworker suggested I begin a liquid diet for a few days and graduate to soft, bland foods such as mashed potatoes, applesauce, etc before returning to solid foods. She explained how my body needed to readjust to food even after a month of eating. My body was likely entering a starvation phase and with an already established sensitive stomach, immediately resuming solid food intake doesn't sound like it was a good choice. Since the first night of resuming solid foods, I have been experiencing the stomach pain, early fullness, reflux, and increasing nausea. Desperate for relief, I followed her advice...for a half day at a time. My hunger for solid food winning in the evenings. However, I was feeling better than I have in weeks during the day with consumption of only liquids. Due to my stubbornness, I have yet to actually complete a full day of only liquids thereby not allowing myself to slowly graduate from liquid forms to solid forms. Sometimes it takes longer for me to learn lessons with my body as I fight against what I know needs to be done.

My stomach is rumbling loudly and bloated in appearance, the pain increasing with each 10 minute period. I set myself up for failure by eating solid food this morning. I'm now miserable, envisioning a scalpel slicing my abdomen to remove my stomach and small intestine and the relief I imagine this would bring.

Albeit slowly, I'll commit to a liquid diet for a full day and allow myself to recover. I tend to require completion of several failed attempts before I am ready to submit to that which I do not really want. If I commit now, I may have resolved my own eating dilemma prior to my appointment with my new adult GI doctor next week.

Sunday, June 14, 2015

Chronic Illness: Teaching Moments

This is a guest post written by Tracy Dee Whitt.

I'm sitting in an Ear, Nose, and Throat doctor's office waiting to get a thyroid biopsy. Familial Adenomatous Polyposis (FAP) is a scary disease, it takes so much away from me and my family.

I was asked about what I've taught my children about my health and health issues. I pondered this question more as I sat in that ENT office, waiting again for a test which results may change my life again. How do you tell your children you have a deadly disease? How do you explain to your kids once again why you can't walk through the zoo, today you can't jump rope or play soccer in the yard, why you can't eat their favorite food, why you can't do so much that every parent should be able to do?
The Whitt Family - No Ordinary Family
I don't tell them everything at once, I break it down, and I don't give the doom and gloom tidbits that crawl through my mind weekly (if I'm lucky).

Before sharing how I tell my kids about my disease, I need to explain a little about my family. We're different. First, we adopted both of our children, Jeremiah is 5 and Payton is 7. Because of adoption my children won't inherit my disease, which I'm extremely grateful for. If my children were to inherit my disease I would make different considerations when educating them, so for this post I'm coming from a different angle than some who will read this.

Another factor that makes our family different is our son, Jeremiah, has autism. He doesn't understand my illness and wouldn't if I explained it to him so for this post I will only be talking about my daughter, Payton, and how I've shared with her about my disease and how she's dealt with it.

I had my colon removed when I was 18 years old (I'm now 36). The removal of such a large organ has caused some issues for me and thus we've talked to Payton a lot about the result of not having a large intestine. (I say 'we' because my husband is very supportive and helps to share with Payton about what I can and cannot do, why my body is the way it is.) This has led to discussions about my disease. 

I tell Payton that I've had my large intestine removed because if I hadn't, I would have cancer. I haven't really explained what cancer is to her because I feel it would cause her to worry too much. She knows her great-grandma died of cancer (different from what I face because this grandma didn't have FAP) and Payton's intelligent so I'm sure in some way she's connected some dots. Frankly, she probably avoids asking too much because she knows the end results of the word 'cancer'.

When I get tests done, she knows about them and knows what they're for. Although she doesn't know the scope of everything, she's aware that mommy has a disease and life is different because of it.

We try not to make life too different, but having this disease and adding a child who has nonverbal autism, life is going to be unique. We try to make it as normal as possible. We are very family-focused and we try to tailor our adventures to fit everyone's abilities.

I've also really focused on getting all I can out of my good days. I only have so much each day and there are days when I don't have anything at all - I'm exhausted and in pain. On the good days I try to spend quality time with my kids. I take them often to hug, hold them, and do any activity with them they enjoy.

Overall, Payton is empathetic to how I feel but there are times when she gets tired of not being able to do something because I'm sick or because I'm sleeping. There are many times I feel guilty because I have this disease, mainly because of how it's affected me. I get so frustrated and a large part of that frustration is around what I can't do with, or for, my family.

So, how do you tell your child about your serious rare disease? It's hard, I don't know that there's a simple way to go about it, especially when it's a disease that's trying to take your life with every breath you breathe. Cancer conversations are horrible to have with children. I think the best way to go about it is slowly and simply, making terminology as simple as possible and leaving out the catastrophic information as long as you can without shutting your child out completely.

I believe that when a parent has a serious illness it can create a compassionate child. I've seen this in our daughter, but more so because of her brother's autism, and this is probably because it's something we live with daily. Many conversations center around Jeremiah's disABILITY.

Because of living with autism and having open conversations about it, Payton has become an awesome advocate for special needs. She is extremely accepting of people who are different and so loving toward others. She is also very helpful with her brother even when I don't ask a thing of her. She knows. She has an innate ability to understand that I need help with Jeremiah and she goes out of her way constantly to assist him. I think so much of who she is stems from having the family she does (both because of her brother's autism and my illness). We explain and openly talk about so much and we are also very supportive of one another.

The family I grew up in treated this disease far differently and in the end it wasn't the best for me. This disease has killed several of my extended relatives including my Grandma, she passed at age 47 when my mother was 22. My mom saw this disease take her mother in such a horrible, unthinkable way, yet she put it under the covers and didn't face its reality. She didn't have a colonoscopy until she was 39, she's extremely fortunate she didn't have cancer and the doctors were able to remove her colon and she's still alive at age 62.

However, this approach of blanketing it and not facing reality caused me to not see what could happen to me. I lived in a sort of utopia. I knew I needed to get regular colonoscopies but I didn't really understand the full devastation FAP can cause. I skipped those colonoscopies for years, probably due to my mom being fine when she was 39 and not having any other complications. I didn't understand that it's not as simple as removing every polyp. I didn't realize how fast this disease can escalate. There was a lot I didn't know. Open communication and further learning could have helped me know what to watch for.

My mom never wanted to talk about her mother's passing, in fact, it affected her so much that she hardly ever spoke of her mom, even the good times. Her death had wrenched my mothers heart so much that she wasn't even able to talk about her. Because of this I never learned about my Grandma, what she was like, what she loved to do, what her best qualities were. Nor did I really know how FAP had taken her. I didn't need to hear every detail at age 15 but as I saw my 20s passing it was something that should have been talked about. I needed to know what I'm facing.

There are some benefits to me living in that utopia but more information would have been better. For example, there's a good chance I wouldn't have done foster care or adopted a special needs child if I'd known what I know now. However, I'm so glad I did, it's been the best decision I've ever made.

These conversations are difficult and so much more for parents who have children who inherited this disease. Take it one step at a time and know that none of us are going to do it perfectly.

Tracy Dee Whitt authors the blog LovinAdoptin, encouraging and supporting adoptive and foster parents as well as those living with autism. She can be found on Facebook, Twitter, and Pinterest.