Focusing Our Efforts

I've been working hard on preparing my new home for moving in and I've noticed several changes - not only physically but emotionally. There's a strong, established connection between behavior, thoughts, and mood - when we change one, we change them all.

I had been experiencing an emotional funk as I was battling my excitement for a new home and grieving my divorce simultaneously. With my new home, I was able to distract myself from my grief and instead focus on my future. And it worked. In spite of a 9.4 hemoglobin, I was able to physically work on my home 14 hour days on the weekends and 4 hours during the week after work. I was pumped with adrenaline, I felt better physically, I was motivated and filled with excitement for the possibilities unfolding before me. And yet just four months ago, with a hemoglobin of 9.2 I was falling asleep at work. And it all changed because I focused my efforts on preparing my new home.

We feel better, physically and emotionally, when we keep active. Whether it's exercise, projects, or socializing our bodies and mind need activity. Remaining stagnant is harmful to our well-being. It is common for depression to take root when we are listless in our activity. Without action, we become bored and isolated, we focus our thoughts on our frustrations and our sorrows. We allow ourselves to become fixated on what bothers us, what's wrong rather than what we can do and enjoy.

The key becomes balance, as it is with so many things in life. Striking balance between activity and inactivity can be difficult at times when we are highly motivated and on a euphoric high of feeling well. We are prone to overdoing ourselves at this point and risk our own health. My family and friends cautioned me as I quickly began to overexert myself in my efforts. I slowed down, started taking breaks and eating regularly again.

Burn out is another side effect of overexerting ourselves. When we start to push ourselves, it is easy to push ourselves too far, too hard, too fast until our motivation and adrenaline fizzle out. We must learn how to pace ourselves in our efforts so that we may take care of ourselves while enjoying the fruits of our endeavors.

Find the courage, the motivation to discontinue inaction and instead focus our efforts and we will find ourselves more fulfilled than when we were listless. Our well-being will be most appreciative of our conscious decision for activity.

Tainted Moments

It's been six months since my divorce was finalized and 10 months since I separated from my now ex-husband. Life has become easier in those 10 months as I learned to accept my marriage had ended. I felt ahead of the game as I had been given the opportunity to start the grieving process months before I made the decision to divorce. I realize there is no going back, nothing to fix what transpired, there is only moving forward. There are moments, days, even months of unceasing happiness where I'm dulled into thinking I've fully moved past my marriage and divorce. But these are only passing moments of falsehood that are ripped to shreds with backslides of emotional torture and backlashes of the destruction to my life that have occurred.

Divorce is a horrendously emotionally destructive force that tears apart the psyche and the heart. Albeit necessary and unavoidable at times. It has an inescapable far reaching grasp on life after divorce. Day by day I learn to live without the one person I considered to be my true soulmate and countless other adjectives to express how much this person meant to a cautious heart that didn't expect or believe it would find or receive what was given in the span of nearly 7 highly fulfilled, unconditionally loving years. And in spite of my daily learning and adjustment, I've come to expect that the milestones of my new life are haunted by my marriage and divorce.

This wasn't an easy expectation to accept. I was blindsided after my divorce time and time again. I experienced long stretches of excellent coping with how my life was unexpectedly altered. I was happy, free of heartache, and enjoying life only to be emotionally slammed when I would accomplish a life milestone by the haunting remnants of my marriage. With each milestone or accomplishment, I'm reminded that I was supposed to be experiencing these moments with my husband not on my own or with another person. And the grieving of my marriage is renewed each time. Grieving that is soul breaking.

Divorce doesn't come in a neatly wrapped package with a guide of what to expect. I've learned one can never truly be prepared for how divorce affects the heart and life afterwards. I will be coping perfectly fine one day and my peaceful existence will be ravaged by the heartache of divorce without any warning.

Presently, I'm in the process of buying a house and as the closing date nears the worst my grieving becomes. It started the day after my bid was accepted by the seller. A couple days later my divorce's death hold loosened. Now, a little over a week away from my closing date and the death hold is tightening again. This is an exciting milestone with great promise for my future. And yet it is tainted by my marriage.

Somehow, I must force myself through the renewed grieving process and continue to forge ahead on the new paths my life holds for me as a divorced person. Otherwise, I will never be able to enjoy the wondrous milestones my future holds for me. I'm still learning how to break free of the death holds my divorce periodically has upon me. I'm told by other far more experienced divorcees that I will experience such grieving periods for 3-5 years as my heart heals and over time life becomes easier.

In the meantime, I must keep sharing my pain with loved ones who will listen to me. I take refuge in the understanding arms of other divorcees who are able to relate to my experiences unlike others who haven't experienced divorce. I restarted therapy. And beyond these steps, I'm not sure what else to do at this point. But I'm taking steps to help my heart heal and enjoy my life's milestones, tainted as they are.

Don't Shut Me Down

I was going through another bout of depression. Not anything particularly new for me. I've battled depression since childhood when my chronic illness started. I've completed years of psychotherapy and resume counseling when needed. Although the triggers of my depression vary, it usually surrounds my health and now my divorce. And occasionally I go through bouts of feeling that life is pointless and I'm simply waiting for death. These bouts can easily become a struggle for me and I frequently reach out to friends when I'm starting to feel the pull of depression again. That is, until I'm shut down for reaching out.

It takes courage to reach out to someone when we are at our most vulnerable point; when we are emotionally raw and desperate for some semblance of peace or happiness. It's not easy opening up to others about depression especially when depression cycles periodically. We often feel like a burden to those around us and tend to struggle with our emotions on our own until we reach a breaking point where we feel we must talk to someone - for our own sanity and safety. Therefore, when we reach out it shouldn't be taken lightly. So when we finally muster up the courage to reach out for a listening ear it can be devastating when we are met with responses telling us to stop talking about what we are feeling and experiencing simply because the person doesn't want to listen or is uncomfortable with what we are sharing.

I was met with such words the last time I reached out to a friend. I can only presume that my depressive feelings was causing my friend to feel uncomfortable but as I read his words telling me to stop talking about what I was feeling I was instantly shut down. No longer did I feel safe turning to this person who wouldn't let me openly talk about my depression. No longer did I see a friend who cared for me but rather someone who wouldn't listen to my words, my pain, my cry for help. I felt betrayed. I thought this person was safe and would be there for me in our friendship. I was wrong and it stung my hurting heart.

When this happens, not everyone will reach out to another person. One rejection for help is
destructive to the psyche and the remaining emotional reserves that we cling to in our times of need. For someone whose depression has resulted in suicidal ideation, there often is not a second cry for help. A suicidal person uses the small remnants of hope and what is remaining of their emotional strength to ask for help and when that help is rejected, there is no more hope for help or recovery. When we lose hope, we lose ourselves.

It is difficult to look past a trusted person's dismissal and betrayal of our cries for help but for our own well-being we must look past another's behavior and try again. There is always someone who is willing to listen whether it be someone we personally know or someone available through online support groups or phone hotlines. We must remember this and hold strong to this knowledge.

If you happen to be privileged with the trust of a hurting person, please be mindful of what this person is experiencing. This person is simply asking for your support and understanding. Sometimes a hurting person doesn't need advice or even words, just simple acknowledgement of their pain. And if you're worried about a hurting person's safety, kindly express your concerns and direct them to professional help whether it is counseling, hotlines, or even 911 in the case of an emergency.

A Moment's Time

In the world of chronic illness anything can happen in a moment's time. Sure, this is true of life in general. However, living in the regularly unpredictable state that is chronic illness this is all the more true. As the chronically ill, we're more susceptible to change and more well-versed in change. We are pushed to our limits to adapt to an ever changing state.

Our health status ebbs and flows, pulling us into streaks of good health only to plummet us in the depths of ongoing poor health. This can happen from day to day and if we're lucky we'll have years in between the tides of changing health. With such changes in health, we become susceptible to a ripple effect of changes overflowing into the rest of our lives - employment, school, social, romance, etc. We may become unable to continue working or finishing school. We experience impacts on our social lives as we're forced to alter our activities with last minute cancellations, limiting activities, or completely giving up some of our activities. We're often faced with difficult choices as we determine who to share our lives and health with - platonically and romantically. We make ourselves vulnerable to those we care to know better. We face the risk of rejection and discrimination when we open up to others. We may even lose the one we loved if our partner no longer has the fortitude required for partnering with someone with chronic illness. And sometimes change can even mean facing death.

And yet, somehow all these changes and risks can be worth it.

With any change we are provided opportunities for growth. We can embrace our changes difficult as they may be. Achieving the embrace is made sweeter by the height of change. We are pushed and pulled, stretched to our breaking point and by the sheer strength of our tenacity, our own courageous determination we are able to rise above the change and make our own changes within ourselves and our lives. It may not be the change we initially wanted but we can make a change our change. We can own it. By owning change, we no longer let it rule and control us. Instead, we strengthen ourselves to rise above the worst of changes and learn to thrive in the face of adversity.

So how do we rise above and grow from this adversity?

• Healing and growth begins with acknowledgment

We can't fully process and move forward until we realize what we're feeling. Only then are we able to start processing our feelings about what we're facing. The time required for processing will vary from person to person and situation to situation. Processing can't be rushed, it must be felt and it can take a lot of mental energy. But once we process we will find ourselves on the other side and much healthier mentally and emotionally than where we started. It's usually not an easy process...but the end result is worth the time.

• Find and use support.

Although there is definite strength in the ability to face adversity and change on our own, it doesn't mean we have to face it alone or that we necessarily should. The need for belonging and social support is ingrained in us psychologically and with good reason. The ability to face difficulty alone is not the same as refusing support. The ability to stand alone is good to have but so is the ability to ask for and accept social support. It's guaranteed that there is someone who is or has gone through a change similar to what any one person is presently or will ever face. And with the advancements of technology and social media that is readily available finding someone who knows what we're going through is easier now than ever. Take advantage of it.

• Change perspective and goals

There is such a thing as the cognitive triad. It consists of thoughts, behavior, and mood. Each part influences the other and changing one aspect with change all of them. So a great way to adjust to change? Change one of these aspects. And what better way than changing our perspective and our goals. Instead of focusing on the negative, reframe the thoughts to center around what is good about the change, what is still good about the situation, and what good can come from it. Changing goals gives us something to look forward to, something to strive for. Without goals, we're left aimlessly going through life without any real purpose. We need goals for our future.

• Acceptance is key

Acceptance won't come quickly in most cases. But it needs to be the end result - for one's sanity and well-being. We focus so much on the change itself and what that embodies, what we've lost because of the change. It consumes us and we begin to feel like we'll never escape. But we will...with effort. No matter how hard it becomes, we must strive for acceptance. That doesn't mean we roll over and give up. No, we find happiness in where we are at in our life and enjoy the present moment. Because we never know when that moment will change again. That's the beauty and monstrosity of life - change happens in a moment's time. Finding acceptance is always beautiful though.

From a Child's View

"Is there any part of your body that hurts that would keep you from playing tag?" my niece asked, peering up at me with her big brown eyes full of hope that this time I could play with her and her sister. "I can play" I answered as a smile spread across her face.

This time I felt well enough to chase my nieces through the outdoors. I knew I needed to accept this play invitation as I may not feel well enough to join in their fun and games later. More often than I prefer I've had to tell the children in my life that I was too sick feeling to actively play with them. Instead, I'd watch from the sidelines secretly yearning to join them just as much as they wanted me to play with them. My heart breaks each time I have to decline their invitations to play. And although I see the disappointment in their faces, they've learned to understand that sometimes I just can't play.

My nieces actually know very little about the Familial Adenomatous Polyposis (FAP) disease that my mother and I share. We are the last survivors in our particular branch of the family line to have FAP. For this reason, it isn't overly necessary for the children of our branch to know a lot about FAP as their parents, siblings, and themselves are negative for the disease. They simply know that my mother and I are frequently ill or in pain and we're limited in our activity because of this. Occasionally they will ask questions, which we are more than happy to answer but most of the time they accept without question when we are ill.

I've been amazed watching my nieces modify their play to adapt to how I'm feeling so that I can typically still join them in one way or another. They have never acted resentful when I've been unable to play with them and instead show concern and care. They don't question or comment when I require frequent restroom breaks or rest periods. This has become normal to them as they have witnessed my health status all their lives.

I've found that allowing a child to witness how chronic illness affects a person greatly shapes how the child will react to chronic illness and its effects. Without exposure and knowledge, an individual is unable to grasp how chronic illness affects one's life. Developing empathy doesn't require medical knowledge of an illness but rather a practical understanding of the effects on everyday life. Throughout my nieces lives they've been aware when I'm ill.

We can share information about our illnesses without delving into too deep of information or scaring a child about our own well-being and safety. It's more important that the child know us and our love than the specifics of a disease, particularly when the child doesn't have the disease. We don't necessarily need to explain our disease to the children in our lives as long as we are real, loving, and ourselves with them. They will come to know us as we are and discover what is truly the most important - our relationship not our health.  

Using a Bidet for GI Disorders: A Review

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

As a GI patient with Short Bowel Syndrome (SBS) my doctor recommended using a bidet to improve personal hygiene and reduce skin irritation. SBS is a rare disease resulting from removal or loss of function of the small and/or large intestine. Among the complications that arise from loss of intestine it is common to have frequent severe bouts of diarrhea even numbering 20+ bowel movements a day for some individuals. This often causes moderate to severe skin irritation, pain, and even bleeding.

Due to the effects of SBS, I was encouraged and nervously excited to try out a bidet.

Bidets are known as an environmental friendly option to toilet paper. Toilet paper can be harsh on the skin and leave unwanted residue. A bidet reduces waste while improving skin care through thorough cleansing. 

I received a Luxe Bidet Neo 185 which attaches easily to any toilet. The Neo 185 has a dual nozzle feature with two settings for posterior and feminine cleaning. The nozzles are protected by a nozzle guard gate and are retractable with a self cleaning option. With a turning control knob, the Neo 185 allows the user to easily control the amount of water pressure preferred for comfortable use and optimal cleansing.

Luxe Bidet Neo 185 Kit

The Neo 185 comes with the equipment necessary for installation and use in a convenient small package. The installation instructions were to easy to follow and installed within minutes. I had never used a bidet previously and was nervous about my first experience with a bidet and appreciated the included brief guide for first time users.

My main goals with the Neo 185 were to reduce skin irritation and reduce or eliminate use of protectant ointment for skin irritation. I required using skin ointment quickly after my Ileoanal Anastamosis in 2001 and hadn't been able to forgo using ointment since. I began using the Neo 185 with each restroom use and discontinued using skin ointment. After one full day I noticed my skin irritation reducing and increased comfortability without my skin ointment.  Feeling comfortable to no longer use ointment on a regular basis was a personal breakthrough.

Luxe Bidet Neo 185 Installed

Flare up episodes of excessive bowel movements with SBS are common causing the skin to become severely irritated and painful from frequent bowel movements and the harshness of toilet paper on already sensitive skin. I still required skin ointment during a flare up. However, using the Neo 185 during a flare up was extremely helpful as the water simultaneously soothed and cleansed the skin allowing for reduced use of harsh toilet paper. The feminine cleaning setting is an added benefit particularly during menses to enhance sanitation and a sense of freshness and cleanliness.

The Neo 185 is a non-electric cold water bidet. I would personally prefer a warm water and a warm air dry option, however, I was pleasantly surprised that the cold water isn't uncomfortable. With the water pressure knob, the water pressure can be adjusted from a light to strong stream as slowly or quickly as preferred without rough pressure. This adjustability helps to increase comfort level particularly when adapting to using a bidet.

I highly recommend the Luxe Bidet Neo 185 especially for use by those with GI disorders to reduce skin irritation and improve hygiene. The Neo 185 can easily be purchased through Amazon at a reasonable price and is well worth the investment for a hassle free bidet.

Defending Invisible Illness

"You don't have anything wrong with you. You have no issue walking." he said with dismissing disdain for what I had shared as I tried to empathize with him.

My word alone that I have a chronic illness wasn't enough for another person with chronic illness too.

Mine just happens to be invisible.

Sadly, I've become accustomed to others looking at me and automatically judging that I couldn't possibly have health problems due to my appearance and age. It is highly frustrating and bothersome at times but for the most part I've learned to shrug it off. After all, I do have an invisible illness. Others aren't able to visually see that my body isn't able to absorb nutrients fast enough to keep up with my Short Bowel Syndrome (SBS) and that I frequently experience chronic nausea and pain. Or that my activities are limited and I have to carefully plan out my activities around restroom access. On occasion others may witness my difficulty walking when I'm experiencing a severe flare up of my SBS when I'm forced to use the restroom every 5-10 minutes for hours and my body becomes so sore I can barely walk even if I wanted to as movement agitates my short bowel particularly during a flare up. Nor are others aware of my past medical treatment for colon cancer and the complications experienced or the future risk of additional cancers and complications.

It's not right for others to make assumptions and judgements about what a person may be
experiencing based solely on looking at that person. But it is understandable that others wouldn't be aware without asking. It's harder to understand though when the person judging another also has their own chronic illness. Those of with chronic illness tend to bond with others with chronic illness as we find understanding, comfort, and safety amongst each other. So we don't expect someone in a similar situation to judge us by looking at us in the same way as others without chronic illness frequently do.

There's no question that continued education and awareness is necessary outside of the chronic illness community. Occasionally we're reminded that continued education and awareness is also required within the chronic illness community.

When sharing with others we need to weigh our timing and our content. With many things in life, there's a right time and a wrong time for anything and this includes our education efforts. If it's the wrong time, our "audience" may not be as receptive as other times. Assessing the moment and the surrounding circumstances can help us gauge the right timing. Determining what and how we say will vary from situation to situation but is nonetheless important. We don't want to present ourselves as victims or as comparing ourselves to another's experiences.

We want to be understood in our own right while respecting and gaining common ground with others. During the in between time of progression, it's important for our own peace of mind and well-being to remember that others are not as open to understanding another's chronic illness and becoming angry and hurt in response is not helpful. Instead, let us try not to take this personally but rather offer the understanding that we are not receiving from these individuals. And in the meantime may we enjoy and encourage one another in our trials.

Iron Infusion

I was directed to a door to the treatment area. I quickly surveyed the large room as I slowly, nervously walked to the nurse's station to check in. I was by myself this time. I was determined to chip away at my PTSD. I must have picked a good time, there was hardly anyone there. Large recliners lined the walls, framing the room with sectioning lines created by more recliners. Each recliner had its own IV pole. "This your first time here?" a burly man asked. "Yes" I sheepishly answered. I was directed to sit anywhere of my choosing. Surveying the room again, I picked the recliner tucked away in the corner. I'll feel safer there, I reasoned. Positioned in front of a flat screen TV and a wall of snacks, protein drinks, coffee and water machines. I was impressed with the effort to maximize comfort. I waited for a nurse to start my IV, all the while trying to remain composed. I had never attended a medical procedure on my own before. While I waited, a few cancer patients began arriving, easily picking out their chairs, visiting with others. This was routine for them.

I sat quietly observing, scared and pondering.

I was having my first IV Iron Infusion with a second infusion scheduled a week away. With tablets I managed to increase my hemoglobin from 9.2 to 11.4 with an iron saturation of only 3%. I've been lucky to have my hemoglobin reach 12 on occasion. I decided I would undergo the trauma of IVs to see what a high hemoglobin felt like. An experience I haven't had in over 20 years.

It took 3 attempts for an IV to be started. Not necessarily uncommon for me. My emotions were being rubbed raw. Years of medical trauma was rushing back over me and without any notice the tears began streaming from my tightly shut eyes. I didn't even realize I was crying until I felt the warmth of my tears trickling down my cheeks. My psyche couldn't take anymore evidently. I began to doubt myself and my ability to attend medical procedures alone. Maybe this wasn't such a great idea to come alone. I can't take this. I don't know if I can withstand 4 sticks....no 6. I've withstood 6 before....6 and I'm done with this.

3rd stick was the charm. I was warned not to move due to the positional nature of the 3rd IV. Like I'm moving with an IV in anyway, ha. I sat perfectly still as the reddish brown iron began to pump into my arm. My attention brought back to the cancer patients who primarily make up the composition of patients there. I scolded myself for letting my PTSD triggers get the best of me. There I sat with cancer patients who endure IVs and chemotherapy on a regular basis just to attempt to survive what is attacking their bodies and there I sat crying over pediatric needle sized IVs.

15 minutes or so passed and I began to feel overly tired as the iron bag drained itself. This was followed by saline pumping in me to be observed for allergic reaction. This, this is why I thought I could attend on my own. I didn't want to burden anyone with a 15 minute procedure. Granted it took 45 minutes to start the procedure and have a working IV. In my drowsy state my confidence returned. I can do this on my own again next week. I'll try not to let myself cry. I'm stronger than my PTSD, I tell myself.

Bruised, sore, and tired I left to return to work. A coworker explained to me it's normal to feel tired after receiving iron but I should notice an increase in my energy within a day or two. So far I haven't noticed a difference in my energy but remain hopeful as I prepare for my second iron infusion just a few days away.

Working While Chronically Ill

Balancing employment and health is a challenging experience. The demands of a job and the toll of stress and exertion upon a chronically ill body is a balancing act not to be taken lightly. With proper care, the right circumstances, and a bit of luck it can be achieved.

Although my pediatric doctor adamantly believed I would qualify for disability due to my health, I was determined to make my own career. I've been fortunate to be able to maintain full time employment for the last 7 years although there are times that I seriously worry about my ability to continue working. I've learned a lot about the importance of self-care during my career thus far in order to maintain my employment status. My parents instilled upon me a strong work ethic. Combine this dedication to my work with my own hard-headedness and determination and a concoction is created for increased stress and susceptibility to illness.

During my first year of full time employment I experienced first hand the serious threat stress places upon the body. I was over-worked and still learning how to handle working 40+ hours a week while maintaining my own health. My body could only withstand the stress for so long. After about 6 months my health began to suffer and I was experiencing flare ups on an almost daily basis. I was forced to quit my job. I took a month to find another job during which time I recovered my health and have been able to work ever since after learning lessons in self-care.

I still struggle with managing my own self-care as I often accept additional responsibilities for a temporary period or insist upon working just a bit longer even when I am ill. I've learned that these behaviors place extraordinary stress upon myself physically and mentally and often result in a flare up. Therefore maintaining my usual responsibilities and taking time off when necessary are absolutely essential for my well-being.

I've learned to pace myself in my work. There are days when I am able to work 10 hours for the day and other days when I can only manage 4 hours. Instead of pushing myself past my breaking point, I must assess my health and my capability and balance it with my work load not only for the day but for the week before I recover during the weekend. If I need to work longer on a particular day, I've learned to lighten my load and increase my resting period on the day prior to my long work day.

For the past 4 months I have been battling anemia after a trial period without iron or B12 medication. I became so fatigued that I was hardly able to keep my eyes open past 11 am on average. I was experiencing multiple symptoms of iron and B12 deficiency and my daily functioning was greatly impaired. I began to worry about my ability to remain employed as my work performance was suffering and unacceptable in my eyes. I voiced my concerns to my managers and restarted my B12 medication on my own. I had to make a change before my functioning continued to diminish.

My employers are aware of my health issues and work with me to help me balance my health and my work. Working for an understanding employer has been key to my employment sustainability. I'm able to flex my time as needed, utilize intermittent Family Medical Leave of Absence, and continue my efforts to maintain a high work performance while monitoring my health status. My managers work with me on bad days and appreciate my good days. They have faith that I will complete my responsibilities, if not today then within a timely manner.

It takes a combination of effort and measures to maintain the best of health particularly when undergoing additional demands upon your body and health. Finding the correct combination for balance takes time and effort of trial and error. It's important to not compare your level of functioning to another as one person's balance set won't be the same balance set for another. It's vital for our well-being to find our own balance and not push ourselves past that balance in order to thrive with whatever endeavors we're pursuing.

To the Broken Hearted

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

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

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

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

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

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

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

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

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

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

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

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

Chronic Fatigue

With a hemoglobin of 9.4 that has likely continued to drop, I'm experiencing chronic fatigue due to iron deficiency anemia. Without enough iron the body is unable to produce enough hemoglobin, which creates red blood cells to carry oxygen throughout the body.

Common symptoms of anemia are

• weakness
• fatigue
• shortness of breath
• difficulty concentrating
• very pale appearance
• grumpy or cranky affect
• headaches

I'm basically running on an empty tank. It doesn't matter how much I sleep or rest, I'm constantly drained of my energy. Moments of rest or sleep are only temporary fixes that quickly lose their power within minutes. I continue to function with the best of my ability and at times it's all I can do to remain awake. My daily life suffers, my job suffers, and I suffer. And yet, unless you've experienced chronic fatigue it's hard to imagine what it is like for that person.

Even when others are aware of anemia or other conditions causing chronic fatigue, it is hard to fathom the depth of fatigue one experiences. I'm regularly asked if I feel any better than I felt the previous day as though a night's rest will make the difference in my hemoglobin or fatigue. I appreciate the thoughtfulness and care of friends and family but unfortunately a good night's sleep isn't going to do the trick with the chronic fatigue caused by my anemia.

Every day is a struggle. I awake from a restful night's sleep only to feel drained again within 30 minutes, begging for a nap. I must force myself to stay through the workday without leaving early just to sleep. If I sit too long I'm overcome with tiredness and my eyelids become heavy, begging to close for a few moments of rest and hopeful sleep. All I think about is how much I want and need to sleep.

My activities are limited and my social life is virtually non-existent. I just don't have the energy for talking, visiting, or participating in social activities especially if they are later in the day. I want to spend time with friends and family but the mere actions of responding to an email or reading a letter taxes my energy. Every task becomes an "I will do it later" action as I attempt to preserve my energy like a precious liquid that is evaporating before my eyes. Even thinking has become a chore as it becomes more and more difficult to think clearly and to focus on what is being said or done at the moment.

When interacting with those of us with chronic fatigue please understand we aren't going to feel better after getting much needed rest. The fatigue stays with us, it's a constant companion until we're able to resolve the underlying cause of the fatigue. And unfortunately, not all of us will be able to resolve the underlying cause. We apologize if it takes us longer to respond or to socialize, we're simply in survival mode at this point. We're pushing forward the best we can with the least amount of interference possible.

When Your Doctor Doesn't Believe You

Last year my pediatric GI doctor of over 20 years decided to push me out of the nest and transition me to an adult GI doctor. During my hospitalization last year I faired well with the change in doctors as my new doctor and I started the song and dance of a newly established patient-doctor relationship.

My doctor specializes in short bowel syndrome, which is one of my conditions courtesy of my surgeries related to Familial Polyposis. At my appointment three months ago, my doctor explained that I have the proper sections of my small intestine required for absorption of iron and B12 and therefore do not require these medications. My hair stood on end, I knew differently. I've been taking these medications since my first surgery at age 9. I knew better. However, in a stubborn fit of wanting to prove my self knowledge and gaining my doctors trust in my knowledge, I agreed to forgo my medications for a three month trial.

I was unable to complete the three month trial without my B12. I began to experience exhaustion, sensitivity to light, and numbness in my extremities. I began to worry about the security of my employment under these conditions as well as my daily ability to function. Two weeks prior to the end of the trial period I restarted my daily B12 microlozenges and started to return to my previous state of health. However, I was able to forgo the iron the entire three months.

Lab day came and it was a show down between my doctor and me. Who would be right, who knew me better? He argued my iron and B12 wouldn't drop much in the course of three months from where my levels previously had been.

My B12 was excellent at 793...but I also had restarted my B12 two weeks earlier. With the results skewed, we'll never know how low it had been. I'm okay with that...I was more worried about my iron at this point. 9.4 with a saturation of 2%. Ding Ding We have a winner. Without an ounce of surprise my body held true to its trends. I do require iron and B12 and was ordered to immediately restart my iron.

At my appointment I requested an ultrasound of my thyroid as annual screening is recommended due to the elevated risk of thyroid cancer associated with Familial Polyposis. My doctor found annual screening to be overboard but nevertheless consented. I'm grateful he proceeded to order my thyroid ultrasound for that day as a small solid nodule was found in both lobes of my thyroid. Although most likely benign, it will be important to continue monitoring these nodules as solid nodules have an increased risk of malignancy compared to non-solid nodules.

With my body following my expectations, I'm hopeful that my doctor has gained trust in my self knowledge and understanding of myself.  My body doesn't follow textbook protocols and never has. The sooner my doctors realize and accept this reality the better it is for my care. Perhaps now he will listen to me more with less argument about what my body does.

Sometimes doctor-patient relationships require give and take from both parties as the relationship grows into a partnership for care. Any new doctor-patient relationship may experience a few bumpy courses as both parties are learning the ways of one another and progressing toward a mutual understanding. If you are finding yourself on a bumpy course with your doctor, be open with your doctor about your concerns and work toward a compromise together. Although my doctor doesn't always see eye to eye with me, I'm grateful that he has been cooperative with my medical requests as our relationship becomes cemented.

Healthy Habits

I lie on the floor with my arms by my sides, breathing in through my nose and out of my mouth, my mind clear. My breathing focused and my spirit calm. My body is heavy against the floor in this relaxed state known as corpse pose as I complete another day toward a healthy habit.

 It takes about three weeks to turn a behavior into a habit. Sometimes that three weeks is a long time when you're trying to build healthy habits. I'm not the exercise or even constantly healthy eating type. My commitment to such healthiness is sporadic. I abhor exercise and I have strong cravings and lack of self-control for the food I love. I go through cycles of increased healthiness after a bout of gluttony and laziness. I'm starting on an endeavor of health consciousness - involving daily yoga rituals and healthier eating. And I feel great (well, for the most part for me)! Some days I have to force myself to exercise but the longer I do this the less of a thought out plan it becomes and instead progresses toward becoming a habit.  I've learned a few things with my recent dedication that I'm aiming to turn into habit.

Self care involves more than tending to the mind and spirit but also the body.

The ultimate goal is to build a strong mind and body.

By nourishing my body with exercise in the form of yoga and healthy foods I'm helping to nourish my mind. This time is rewarding as I set it aside for 'me time' to focus on myself and let go of the worries of the world. The beauty of yoga and similar exercises is that relaxation and meditation moments are built in as the body connects with the spirit. Each pose focuses my mind and breathing. My attention placed on the within rather than merely the physical strength each pose demands.

My body welcomes fresh foods rather than processed and high fat junk foods. The flavor of a balanced meal becomes rewarding in itself and my body appreciates the healthiness with added benefits of no longer feeling bloated or sluggish. Previously when I followed the Anti-Inflammatory Diet my body quickly detoxified itself, losing weight rapidly, and improving my health within days of cutting out unhealthy foods. The difference in how my body felt before and after was remarkable. Staying hydrated is a challenge for me at times due to how quickly my stomach becomes full resulting in stomach cramps. I have been working hard to drink at least the minimum recommended amount of water everyday and I'm noticing improvements as I'm rewarded with hydration and further detoxification.

It can be difficult to change our habits, whatever they may be. But it can be very rewarding to change old habits and create new ones, particularly when it is for the betterment of ourselves. We deserve self-improvement and the effort that is required for self betterment is always worth it in the end. We just need to remind ourselves to continue to push through. We'll love ourselves for it later.

Camaraderie of Chronic Illness

For those of us with a rare disease or other chronic illness, it doesn't take much to relate to one another regardless of the diagnosis. Our commonalities create an instant bond, an instant understanding of another's life with chronic illness. We don't need the same diagnosis or even the same symptoms or experiences. We experience enough and know enough to have an idea of what life is like with that condition.

We Share a Medical Life

• We share many of the same symptoms across conditions.

               It isn't uncommon for us experience the same generic symptoms that sweep across the board of conditions. We often simply feel sick - that blah icky feeling that leaves you drained of energy and good health. We tend to have susceptibility to common ailments such as a cold or the flu. Fighting for our immunity is a known battleground for our health. We likely experience some type of chronic pain. Within subgroups of conditions, we share even more common ailments. Those within the GI condition group experience some type of stomach upset whether it's nausea, pain, or bowel issues. We have additional uncommon symptoms but we have a primary source of shared symptoms with different causes. But no matter what - we can relate.

• We share the balancing act between the medical and our daily life

              Our days are occupied with  an abundance of medications, medical appointments, and more frequent hospitalizations than those of the average healthy person. We know the burden of medical expenses and the absorbent amount of time required for managing our health. We relate to the frustration and demands of balancing medical obligations and our everyday life. We understand choosing between one activity over another because our body may not let us complete both choices.

• We share the struggle of disclosure

              Disclosure can be a tricky subject. Knowing what and when to share with the various groups of individuals in our lives isn't always easy. What and when do we share information with potential and present employers, potential romantic partners, friends and family? It can be difficult to know the right timing and amount to share our inner most health secrets. We share the same worries and concerns about if our disclosure will be met with understanding and acceptance or rejection and ridicule.

We Share a Personality

• We share important life lessons and virtues

               We know what it means to persevere, to have inner strength and determination. We've learned what it takes to survive and to survive on a daily basis. It takes real strength to not give up; to keep chasing our dreams and to make the most out of life. It's hard business keeping up with life when you're sick yet we manage to everyday.

• We share a deep appreciation for life and achievements

               We've learned not to take life for granted. We've all lost many loved ones with similar health issues. Repeated losses teach us to cherish everyday, especially the good days. And on those good days we're extremely proud of our accomplishments. It isn't always easy to achieve your goals when you're dealing with a chronic illness. We appreciate how far we've come in life in the midst of health issues and make the best out of each day that we can.

• We share with one another and support one another

               No one knows as well as another chronically ill person the difficulty that one faces on a daily basis. We share our stories with one another and we band together in whatever form available to create a strong support network. We honor and respect others for their achievements. We celebrate the victories of others, small or large, and we empathize during the bad days when life can be trying and discouraging.

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

This is a guest post by Amy Oestreicher

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

When You're Alone

I never truly allowed myself to believe I'd marry. I didn't think I'd find someone who would and could love me as much as I needed with my chronic health issues. I would require caregiving on a frequent basis and likely at some point, I'll require it on a much more regular basis. That is a lot to request from another person, especially from the very beginning of a relationship and a marriage. Could I find someone who would be willing to take on this responsibility from the get go? I did and I thought my life was complete...or so I thought.

From a set of unfortunate circumstances and events, I lost my trust and the life I knew had changed and I couldn't change it back. My complete life was being torn apart and divorce was on the horizon. I have a new life to fulfill on my own now.

Facing a life alone with chronic illness and the possibility for a cancer diagnosis again in my future was a terrifying choice but it was a choice I had to make. I felt completely alone in the world. Questions raced through my mind, filling my heart with fear and anxiety.

What would I do if my health worsens? What would I do if I developed cancer again? What would I do if I couldn't work anymore and support myself? What would I do? What would happen to all my dreams? Can I do it all alone? 

 Making that choice was the hardest part.

Once I made the choice, as difficult as it was, a relief began to set over me. A relief that would grow the more I shared my concerns with my friends and family. A concern that was fettered away by more and more people. My primary support system offered reassurance and oaths to never leave me alone in this world. I would be taken care of when the time came. In addition, I will be purchasing long term care insurance to ensure the financial burden of caregiving is provided for without need from others. I'm doing everything I can to ensure my own well being is cared for - by myself or by caregivers.

I'm learning more than I ever expected during this process. It never ceases to amaze me how much we can never truly prepare ourselves for all that we will encounter in life though we try.

I'm learning to value and fiercely protect my independence. To stand on my own two feet and create the life I want for myself is the greatest accomplishment I'll achieve and I am excited to create a masterpiece. To lose my independence is now my greatest fear. I will fight tooth and nail to maintain and support myself and will gladly do so. My eyes have been opened to the joy that is self sufficiency and the fulfillment that accompanies it. I'm finding that independence is much more than financial independence - it is the emotional and mental survival in the face of destructive forces.

I'm learning to cherish my support system more than ever. I'm gradually becoming accustomed to turning to the people in my support system when I need a shoulder to lean on. I'm discovering that independence isn't not leaning on anyone ever but discerning between periods when I can handle an emotionally tough time on my own and an overwhelming period when I need my support system's aid. I'm letting my people be there for me and am gratefully returning the favor.

No matter what is yet to come, I'm looking forward to tackling each issue with a new set of skills that I continue to hone. And I've realized, we're not alone after all - not as long as we let others in.

Anxiously Awaiting

The last year has been a monsoon of emotions and personal events that included a long bout of depression from increased health issues, the death of a beloved great uncle, and the emotional loss of individuals I once deeply cherished. With the ups and downs of the last year, I embarked upon a path of self discovery and self transformation. I am finding peace within myself and loving every moment of it. However, patience is by far not my strong suit.

There is a great number of things I want to accomplish this new year yet I'm constrained by time. Time inhibits my ability to complete my actions, my goals as quickly as I'd prefer. I must wait for the right time or for the process to be completed for each personal goal. I'm left anxiously awaiting the passage of time as I fervently work toward creating the life I want.

There are times when my eagerness surmounts in an exhausting, terrifying ball of anxiety. It catches in my throat, words can barely be uttered. Tears well up in my eyes, desperate to escape. My chest tightens, constricting upon itself as my mind races trying to calm itself. I repeat my self soothing mantras, frantically reminding myself that it is only anxiety...I'm not having a heart attack. Although it feels like it.

It's easy for us to get ahead of ourselves when we are so intent, so earnest for the arrival of what we want. It doesn't matter what it is, we tend to want what we want when we want it. It's hard not to jump ahead and just have what we want. We think if only we could fast forward time! The world doesn't work this way though. We need to wait for others, we need to allow time for the process, or we need to move forward in a systematic way - achieving one step at a time. But really what we need is to simply learn patience and enjoy the journey. The journey is what fulfills us after all. The ability to look back and realize I did this, I accomplished this, this was me!

Learning patience isn't easy. As a highly impatient person, I feel as though my strides in learning patience are minuscule even though I notice a difference in how far I've come in the process.

When the anxiety of impatience has a stronghold upon me, I have to remember a lot.

• I remember it's merely anxiety. If I want to calm myself, this is the vital first step. Until I understand it's just anxiety, my mind will keep racing and heaving more anxiety upon me. Self talk and breathing are essential in calming my anxiety provoked fears.
• I remember what I'm doing to achieve my goals and what I still need to do. I map it out. Where I've been, where I'm going.
• I remember my plans for reaching the next steps in my plans. Without steps lined out, I'm simply waiting without direction.
• I remember I'm doing everything I possibly can. Some things are out of my control but I'm doing what is within my control. I'm not passively sitting and waiting. I'm taking action.
• I remember it isn't always the right timing. I won't be able to obtain solutions until I can gain more answers. Answers that are only available when the timing is ripe.

The next time the anxiety of waiting hits, remember where you are, where you've been, and where you're going. This helps to keep the small details in perspective to the larger picture at hand. Although the journey of patience can be infuriatingly frustrating and difficult at times, in the end it is far worth allowing the process to take its course. We gain great insight, wisdom, and skills when we push the anxiety aside and continue on our path.