A Deadly Duo

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

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


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

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

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

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

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

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

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

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

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.

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.

Life's a Polyp Shop

Donate to NORD FAP Research Fund

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.

Chronic Illness Teaching Moments: Tracy's Story

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.