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.

Against the Odds

When I was unexpectedly rushed to the hospital and admitted for four days, my only concern was my ability to continue with my travel plans with my husband and parents to Alaska on a cruise the following week. An Alaskan cruise is a bucket list vacation for my mother and I, we've been planning and preparing for over a year and there wasn't anything that would make me miss our cruise short of being held hostage.



Seward, Alaska

After a limited appetite leading up to my hospitalization and 2.5 days without solid food while in the hospital, my stomach has not been able to tolerate food properly since resuming a solid food diet. I have been experiencing
severe stomach pain, cramps, and bloating shortly after eating and the pain lasts for the majority of the day and at times into the next day. I attempted to return to work immediately after my hospital release but my body rejected my attempts and forcefully informed me of my inability to resume normal work and activity. I was forced home for the next two days.



Snorkeling in Ketchikan, Alaska

My parents and husband urged me to cancel our travel plans due to the onslaught of pain and how it would affect my travel and activity ability. And I must admit, I was uncertain myself although my stubbornness would not allow me to miss this travel opportunity I had been yearning for over the years. With proper rest and limiting my food intake, particularly during the day, I managed to complete a half work day prior to leaving for our cruise. I wasn't sure how much of the activities I'd be able to participate in nor how much I would enjoy even being in Alaska but I maintained my argument that I would be able to enjoy our time on the ship and venture through the cities and excursions as able. I would watch my food intake, rest when needed, and take Lonox and pain medications to maximize my participation ability. Some days were more difficult than others due to the stomach pain but to my surprise and relief I was able to enjoy the majority of our trip, complete all excursions, and participate in many activities.




Hubbard Glacier. My husband spreading awareness of FAP

We spent an evening in Anchorage before driving to Seward for our cruise departure. Docking in Juneau, Skagway, Icy Strait Point in Hoonah, and Ketchikan we enjoyed whale watching, a train ride through the White Pass Yukon Route, nature walks, local culture education, and snorkeling. Our last day was spent touring Vancouver, British Columbia and to my surprise I managed to walk 5 miles in Vancouver to visit the Hard Rock Casino for souvenirs to add to our Hard Rock clothing collection! We hailed a taxi cab for our return to the train station for time management and relief from shin splints and further risk of dehydration. In spite of daily stomach pain that required rest from activities aboard the cruise ship and mandatory consideration and preparations with food and medication, I thoroughly enjoyed our trip and I didn't want to return home. My soul was touched by the history, culture, and nature of Alaska leaving within me inspiration and peace.



Mendenhall Glacier Juneau, Alaska

Since returning home the pain has yet to subside to my previous normal levels and I am limiting my food intake during the day to allow myself to function with minimal pain at work and during activities. I have an appointment with my new adult GI doctor at the end of the month to review my biopsy reports from my stomach polyps and intestinal ulcers as well as future treatment. I did obtain a copy of the pathology reports stating the stomach polyps were hyperplastic meaning they were benign and not pre-cancerous polyps. My ulcers were typical and without any malignancy meaning I understand that I do not have Crohn's Disease nor did I anticipate I did although I appreciated the doctor covering all bases. During my early college years when I began developing stomach polyps my doctor provided the prognosis of stomach cancer by the time I was 30. I am less than a month away from my 30th birthday and I'm ecstatic to report that my doctor's prognosis was wrong. I may develop stomach cancer later on but not before age 30!


Icy Strait Point, Hoonah, Alaska

Health Maturity: Reaching New Milestones

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

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

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

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

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

Celebrate your milestones for each takes thousands of small steps 

to reach that moment in your life.

Navigating the Road of FAP: Jamie's Story

This is a guest post by Jamie Klapper

Familial Adenomatous Polyposis (FAP) has been a major impact on my life from the time I was very little. My mother and grandmother both had this condition as well as me. From the time I was little, I remember my mother going to doctors and having a lot of procedures. The turning point that FAP became the most evident is when my mother had her whipple procedure due to duodenal cancer and almost died from the complications. I was 9 and I spent a month of my life watching her struggle to live. She developed Adult Respiratory Distress Syndrome, fluid built up in the air sacs in her lungs reducing the amount of oxygen in her bloodstream, and was placed in a medicated coma, she stayed in the ICU unit for three weeks. I wasn't allowed to visit her during this time and my mother's cancer diagnosis was not fully disclosed to the family until later in the cancer's progression. Due to the risk of losing my mother and the prolonged separation from her, I experienced severe separation anxiety upon her return home from the hospital. My mother underwent chemo for the duodenal cancer and survived.



Jamie sporting her FAP Awareness Shirt
and I Am Strong Socks

During high school, I was officially diagnosed with FAP via blood test. The one thing I remember was the doctor asking me if I understood what he was saying, my first thought was "Yes I do, I'm not stupid". During high school, my diagnosis was kept a secret from everyone to honor my father's wishes. My father is a very private person and he felt this was a family issue that was not for everyone else to know. For the first few years after diagnosis, only a few very close family friends knew. Due to the privacy of it, I always felt that it was like I did something bad. I decided when I went to college things were going to change and FAP was not going to be such a hush-hush topic. I realized I had not done anything bad and FAP was just a part of me. I wanted to be able to have support and knowledge with the FAP, I didn't want to have to sneak around anymore. It had become difficult to come up with excuses for missing school for procedures, particularly colonoscopies due to the extra time needed for a prep day. Freshman year of college I became more open, explaining that I had a genetic disease and what FAP did and how it affected me. It felt so great to have this in the open and no more hushing around. I finally had friends who I could talk to and who could understand my struggle. I would need this support more than ever as it was during this year that my mother's cancer returned in her stomach and she was undergoing surgery to remove her stomach when liver cancer was discovered and the surgery was halted. She underwent chemotherapy a second time but did not survive the cancer this time. One of my hardest struggles has been losing my mother and grandmother to FAP, they were both very strong women who meant a lot to me. I now realized I was fighting a monster. I felt defeated without her and since her passing I've experienced a number of my own health struggles.

In 2006, I had a total colectomy with reconnection. The change from pre and post surgery has been a lot to adjust to. Right after the surgery I had every infection you could think of and I spent several days in the hospital. I returned to college going to the restroom up to a dozen times a day. I student taught and graduated from college. Since that time I've developed growths on my liver requiring close monitoring, liver embolization therapy to reduce or block the blood flow to cancer cells in the liver, intestinal obstructions, and severe chronic abdominal pain. FAP has greatly impacted my life and primarily so by taking away a normal life for me. It has been difficult that at the age of 24 I had to stop working due to the severity of chronic pain and the complications I've experienced, including frequent bowel movements requiring immediate restroom access or risk accidents. I now spend my days in doctor offices and taking medications to manage my health. I watch my friends having fun and starting families and this will never be my reality. Friends and family tell me how strong I am but I feel like I'm fighting everyday just to make it through. I mourn the life I thought I would have.

In spite of the struggles I've discovered a number of ways to help cope and live with FAP and the complications. Support in person and online have been very beneficial. I have regular counseling sessions with a social worker and enjoy various online support groups for FAP and chronic pain through Facebook. Most importantly, being open with others about my experiences rather than bottling up my experiences and feelings has made a difference in addition to raising awareness of FAP so that others down the road might have a less difficult time.

Jamie Klapper is an active member of FAP and Chronic Pain Facebook Support Groups. Like many of those with Familial Adenomatous Polyposis, Jamie witnessed the effects of FAP on her family prior to having her own experiences. Navigating through the terrain of FAP on the body and mind is never an easy task. Jamie discovered the importance of social support throughout the journey and the difference it makes for one's survival.

Short Bowel and FAP

It's common for those of us without our full intestines to share the diagnosis of Short Bowel Syndrome (SBS) in addition to the original reason for our reduced length in intestines. I didn't think much of it when I scanned rare disease lists and saw SBS listed; I didn't grasp SBS as a disease or condition. I've lived with SBS so long that it had become to mean just a side effect of my surgeries. The more I read the more I began to realize SBS is not just a side effect, it is its own disease and requires its own treatments beyond supplements for vitamin and mineral deficiencies. It's a simple yet complicated result too many of us experience from our surgeries.

"Being aware, constantly, that dry chicken, steak or ribs will likely cause an intestinal blockage as well as vegetables such as green beans is only one of the checklist items I need to take care of. A daily dose of extra iron and vitamin D in addition to a daily regimen of prescription drugs must be scheduled along with adequate time for the extra restroom visits as I plan my activities. The constant pressure is like an irritating buzzing mosquito that you can't possibly get rid of and that routinely settles in for a more thorough attack; intestinal blockages, ER visits, hospitalizations, outpatient procedures, regular checkups, and the list goes on. No wonder my family accuses me of having a temper, I do have issues that cause an everlasting amount of psychological pressure. Part of this pressure is the fact my daughter also faces a daily life filled with chronic pain and health issues associated with her own short bowel." - Living with short bowel as described by my mother.

Previously I discussed my perceptions of my health issues as separate from FAP. FAP itself is the original source of my health issues as without FAP I wouldn't have these issues. Yet these issues aren't symptoms of FAP. They're symptoms of the SBS, a completely separate diagnosis. My understanding of SBS expanded from a simple result that increases difficulty absorbing nutrients and causes diarrhea that may require medication to a revelation that connected all the dots of various bits of information to create a large net capturing multiple issues and symptoms. This validated what I already knew but hadn't fully realized. In addition, I have learned new aspects of SBS that I never knew or wouldn't have connected with SBS. For example, edema of the legs and feet may occur as a result of malnourishment from SBS.

Prior to this I simply explained away bothersome symptoms as my body having a sensitivity to food. I now understand that the bloating and cramping pain I experience whenever I eat is actually the SBS. The 5 years of struggles with excessive malabsorption and inability for any medications to control stools wasn't just my body recovering from surgery. It was my SBS and a new period of intestinal adaptation that was brought on by my second round of surgeries in high school. After my first round of surgeries in grade school, I was left with an ileostomy and the SBS wasn't as apparent as it has been with my straight pull thru. With my ileostomy, I remained malnourished until I was placed on a weight gaining diet the following year and I maintained appropriate electrolyte levels and weight until my next set of surgeries in high school. I attribute the differences in my ability to maintain electrolytes to the position of my intestine. With an ileostomy, there is more folding or kinks in the intestine as it is moved to exit the abdomen. However, with a straight pull thru the intestine is stretched into straighter positions for reconnection to the rectum. My SBS has been present since my first round of surgeries but the symptoms of SBS weren't as visible or severe until the straight pull thru was performed. One nice side effect though is I will never have to limit my sodium intake!




My Central Line for TPN

My mother's description captures the daily struggles of short bowel perfectly. My mother and I have mild cases of short bowel compared to others who require more drastic measures of treatment to manage SBS symptoms and obtain nutrients. I briefly required TPN or Parenteral Nutrition for about 6 months in high school due to uncontrolled SBS that led to an ulcer at the area of reconnection. This ulcer led to a hole in my intestine. This experience provided a deep appreciation for anyone requiring ongoing artificial nutrition treatment as this was a major inconvenience, uncomfortable and at times painful ordeal. My catheter site hurt and was tender; I was unable to wear regular shirts as the fabric irritated my catheter site. However, this allowed me to the be only student in high school allowed to wear spaghetti strap shirts at school. Ha. The slightest amount of pressure on the site was painful; riding in a car was an inconvenience as the seatbelt placed too much pressure on the site. The catheter at times would pull against my stitches causing pain and at the end of 6 months, I had only one stitch remaining holding my catheter in my body. I'll just say, that created a constant level of pain I would be happy to never experience again. I required IV antibiotics for an infection obtained through the catheter. I couldn't take a shower and washing my hair over the sink or tub was painful and worrisome due to the risk of infection from any water exposure. It was tiresome for others to point, stare, and ask questions about the catheter dangling from my chest. To make light of the situation though, I came to call the catheter my jewelry.

Regardless of the level of severity one experiences, SBS deserves our attention and care to properly maintain our health the best we can. It is difficult at times but it is manageable. Sometimes all we need is time for symptoms to improve; time for our bodies to heal and adjust to a new norm.





NORD is a wonderful resource for information on more than 1,200 rare diseases. NORD offers a full report on SBS. For additional information and resources specifically for SBS visit Short Bowel Support

Stress and Chronic Illness

This Post includes Sponsored Link

Stress is a powerful energy that can help and harm us. Stress can serve to motivate us to take action and complete tasks but it also can place great pressure on our mind and body with negative consequences. Stress affects every part of our body and often triggers or exacerbates symptoms and diseases. Find a full description of the effects of stress on the body here.

With small amounts of stress, I notice the inconvenient, annoying symptoms of muscle tension, irritability, anxiety, and difficulty sleeping. However, when I have intense stress the symptoms worsen and in addition I experience increased degenerative joint pain, sadness, often have crying spells, and my SBS symptoms worsen. The combination of inadequate sleep and stress sends my SBS symptoms into hyper drive. I'm unable to tolerate foods, even liquids, and any movement becomes unbearable. Ingestion increases the amount of waste produced to be expelled at a rapid rate and movement further increases the frequency of those restroom trips. The ongoing barrage of this cycle results in pain and soreness that spreads to my entire body. Sitting and lying down are even difficult as my body struggles to slow down the SBS.
From the onset of this cycle, I know my stress is out of control and I'm walking a thin line; I need to check my stress immediately.

We all experience and manage stress differently. I'm very Type A Personality, I'm a planner and a problem solver. For me, I have to tackle the problem and find a resolution. However, once I've hit the boiling point the first thing I must do is cease ingestion and find time and space away from everything - work and activity - so that I may allow my body to begin to relax. Once I secure this, I can begin resolving the source of stress. Identifying and establishing a game plan is a must for me followed by expressing my feelings through verbal or written word and utilizing a sounding board.

There are many options available though to help manage day-to-day and chronic stress to protect our bodies and prevent reaching the boiling point. Consider the following in your own regiment for stress management:

• Stress Management Diet - food plays a vital role in our health and eating foods rich in vitamins and minerals that promote healthy brain chemicals can help lower stress hormones. Participating in cooking classes can provide an additional benefit for learning new ways to create healthy and tasty meals incorporating such ingredients. Cooking classes may even double as a stress relieving activity. Communities often have various cooking classes available, such as the one offered by Chef Alex Friedman Master Class.
• Meditations - the different types of meditations are endless. Yoga, Tai Chi, Pilates, and Qigong are great individual or group exercises that include meditation. Guided meditations are also incredibly useful and can be learned to be used on your own in any situation.
• Breathing - although breathing is used in meditation, there are different exercises for focused breathing that are very helpful.
• Sleep Well - getting adequate and restful sleep is a key factor to protecting one's physical and mental health. This can be quite challenging when we are feeling stressed or anxious.
• Activity - engaging in activities of enjoyment, socialization, relaxation, distraction, and exercise all serve to reduce anxiety and stress. Get back to a hobby or try a new one out, spend time with a loved one, pamper yourself with a massage, hot bath, skin detox, watching a sunset, music or books, and get some physical activity. 
• Support - we can't go about life on our own. We all need someone to lean on for support. Utilize that person(s), that's what friends and family are for - to help one another. Reach out and find more individuals to add to your support system.
• Take Time For You - everyone needs downtime to relax. Sometimes it's hard to make time for this, but it is important. This time allows for decompression and recharging - both needed for tackling the next task you have.

The Touch of Cancer

Colon Cancer Awareness Month always leads me to reflecting upon my own family's experiences with colon cancer. I've mentioned before that FAP has ran in my family for many generations and we have had countless numbers of members die from colon cancer. Although my father's family doesn't have FAP, my paternal grandmother died of colon cancer and a very beloved paternal aunt of mine also unexpectedly developed and survived colon cancer.

Growing up with both my grandfather and mother living with FAP allowed me to gain a lot of firsthand knowledge and understanding of ostomies, FAP symptoms, and eventually cancer. I realized that the majority of people weren't experiencing what my family was and yet it was all completely normal to me. With each generation of FAP in my family, the more we've gained in information and understanding.

My grandpa survived colon cancer and appeared to lead a healthy, stable life. He developed colon cancer in the late 1950s and had his colon removed and a reconnection. I have vague flashes of visiting him in the hospital in 1994 when he developed rectal cancer and underwent another surgery for ileostomy and radiation. I never saw him struggle with his health after that until the last year of his life. He didn't let his ileostomy stop him from what he enjoyed. We went on several fishing trips, hiking through the woods, canoeing and camping trips every year. My grandpa was one of the most cherished individuals in my life. He taught me indescribable amounts of knowledge, skills, and values; we spent countless days and sleepovers together. There was no one like my grandpa and in my eyes, he could do no wrong. He was a strong, independent man with a great love for the land and his country; he fought in World War II and was awarded a Purple Heart. He saw and experienced unimaginable horrors that he kept locked away, rarely to be spoken of again. He was a no non-sense man and yet he could laugh and play in the most fun loving ways with his grandchildren.


Me and My Grandpa

Then one day, the health of this robust man began to decline. It started with reflux after eating at times, this reflux continued to worsen and he began vomiting small amounts and then large amounts after ingestion. He was rapidly losing weight. He sought medical care at our local VA and was prescribed anti-reflux medication and was advised that his esophagus was narrowing causing the reflux and vomiting. He underwent procedures to place stent like devices at the opening of his stomach and within his esophagus to reduce the vomiting and reflux. This reduced the symptoms temporarily but never provided the necessary relief. His weight continued to decrease, his body was wasting away already. Unfortunately, thorough testing wasn't performed from the onset of his symptoms but instead 4 months later when he was admitted to the VA hospital. After he had his ileostomy, he was never told he should have routine endoscopies and therefore never had any performed again until this admission. Once he finally underwent an endoscopy, the true culprit of his symptoms was discovered - FAP had caused stomach and esophageal cancer. This discovery came too late, cancer treatment wasn't a viable option and hospice was elected. Over the course of the next 3 months, my parents and I visited him routinely to help provide care and spend as much time as we could with him. Towards the end of his life, his mental capacity was altered and he was succumbing to the vast effects of cancer. I watched him mistake tv remote controls for the telephone as he tried to answer the ringing he heard. The bedroom I grew up in taking naps and watching wrestling with my grandpa was now his deathbed. He was no longer speaking and rarely conveyed any acknowledgement of his loved ones around him. I held his hand and told him how much I loved and cherished him and although deeply saddened, it was time that he left this earth. He squeezed my hand and I knew my grandpa was still there trapped within that cancer ridden body. I knew he heard me and he gave me the greatest gift he could - a hand squeeze. He died the next day.

My mom was the only child of my grandpa's to inherit FAP and expected her experience to be much like his had been the majority of his life. My mom's journey was fairly calm until she unexpectedly received a diagnosis of colorectal cancer shortly after giving birth to me. My grandpa's health wouldn't change for the worse until 14 years later so everything up to this point was considered normal in our family. My mom expected to have the same surgery as my grandpa's first surgery, large bowel removal and reconnection. My parents were surprised with different news - a permanent ileostomy and very little information. Soon after my birth, my mom had her surgery and experienced a multitude of complications and nearly lost her life. Unlike my grandpa, whose struggles I rarely witnessed until the last year of his life, I witnessed my mom's struggles daily with her energy, ostomy, and frequent intestinal blockages. I've been fortunate to never have issue with food causing intestinal blockages. Yet my mom experiences intestinal blockages nearly monthly in spite of her best preventative efforts and would often require hospitalizations from the blockages. Fortunately, her number of hospitalizations have significantly reduced over the years. In 1998, she underwent the Whipple Procedure due to a precancerous FAP polyp in her duodenum. The surgery was successful but she had a difficult recovery with extreme pain and stomach issues that seriously impacted her ability to eat for an extended period of time.


Me and My Mom

My mom is my true inspiration and my hero. We experience the common mother-daughter relationship issues but I couldn't ask for a better mother. She has always been there for me, so very understanding and supportive. Because of her FAP experiences, she's able to fully relate to my health challenges. That's an incredible and rare gift a mother can give her child, especially when it comes to a rare disease. My mom let me know I wasn't alone in this journey when I didn't know anyone else outside of the family with FAP. Even in her own health challenges, I'm one of her first thoughts. When we were both simultaneously hospitalized, she chose the adult hospital connected to the children's hospital so that we could visit. As an adult, I've had the honor of returning some of the care she so quickly and willingly provides me. FAP has placed very difficult choices and tasks upon my mom regarding herself, her father, and her child and yet she faces each obstacle with an intense resiliency and quiet strength. I would never wish any health issues upon my mom but I can't help feeling grateful that if both of us were going to have health issues anyway, I'm glad we share them. By sharing this disease, she was able to teach me about the disease, ostomies, and the values I would need to develop the skills necessary to live with this disease. I would be lost without her. 

Like most families affected by FAP, colon cancer is sadly part of our family. I think of the numerous ancestors my family has lost to colon cancer and how it has touched each of my family members. The rarity of FAP, a colon cancer causing disease, is evident in each of our stories. We all experienced doctors who were unfamiliar with FAP and thought cancer stopped with the colon with FAP. Medical care and informed medical decisions were not properly provided to all of us. This lack of information and proper medical care significantly impacted us and our outcomes could have been drastically altered with the proper information and treatments. My grandfather and mother could have been diagnosed significantly sooner, received treatments at the early stages of cancer and not have experienced such risks to their lives and ultimately death for my grandfather.

This is yet another reason why research and awareness is essential for the treatment, cure, and survival of  individuals with rare diseases and cancers. The FAP Research Fundraiser was a huge success and we raised $640 to start a FAP Research Fund with the National Organization for Rare Disorders. You can now find all kinds of products with various designs with profits donated to NORD FAP Research Fund at Life's a Polyp Shop. I hope you'll join our efforts.

Staying Healthy

For those of us with chronic illness, our immunity is already suppressed and the risk of our health status changing due to viruses or a flare up upsetting our body's delicate balance is a threat not to be ignored. It's a constant struggle to maintain proper electrolytes even without the presence of an additional illness. The consequences of an upset balance can easily land us in the hospital. It seems like even the symptoms of a non-severe virus, such as a cold, are multiplied for the immune suppressed.

Over the course of the last couple months with my husband's health changes I've noticed my stress levels peaking and the wear of it upon my body. Although the stress of his health crises have quietened, my stress has changed focus from him to work and my dwindling energy has become more apparent. Although I am sleeping soundly, I'm discovering I'm not obtaining the amount of restful sleep I truly need in order to function properly. Most nights I awaken early in the morning and am unable to resume sleep for 2-3 hours. And even on nights without any insomnia I continue to struggle with my energy the following day. My days are long and difficult, leaving me mentally and physically exhausted and my only salvation is the weekends when I can sleep in late. The perplexing issue is my lab values have maintained their usual levels - remain anemic but not any lower than usual and my B12 is above average. My only conclusion is stress is robbing me of truly restful sleep.

I've worried about my health deteriorating due to the combination of a lower immunity, high stress, and sleep deprivation. This is definitely not something I can afford, particularly at this time. My doctor, advocating for me as always, immediately suggests I reduce my work hours and offers to help me do so medically. My fear is that full time employment will no longer be an option if I can't find a way to maintain my health. I nearly required hospitalization after my first attempt at full time employment several years ago due to the effects of stress upon my body. I've survived full time employment since that time and I want to maintain that ability.

We can help to reduce our risk by controlling our stress and boosting our immunity. And the Immunity-Boosting Guide by the lifestyle blog Fix.com couldn't have appeared at a more opportune time. I had been placed on a special diet and supplements to cater to my electrolyte imbalance during the rough years of my health. At the time I tracked the essential vitamins and minerals in particular foods so that I could incorporate them into my diet regularly. Since that time I've forgotten that wealth of information and the Immunity-Boosting Guide sums up a lot of this information and tips in one infographic to help reduce illness risk while naturally boosting our immunity through food and behavior.
Granted, anyone with a bowel disorder and who has gone through abdominal surgeries needs to be mindful of foods that may risk an intestinal blockage or excessive diarrhea. Review the UOAA Diet and Nutrition Guide for further information.
I hope you'll find both sets of information helpful for your arsenal in maintaining health and reducing further health complications.

What FAP Means to Me

We are all faced with at least one event, one experience that shapes us, changes us, and forever transforms us. It etches out a path, trailed with the obstacles and joys that may stem from our transformative experience. We're drawn to this path like a moth to a candle, we may fly elsewhere but we are always drawn back.

Familial Adenomatous Polyposis is that transformative moment that lasts a lifetime for me. For someone unfamiliar with FAP, it's hard to grasp the full meaning of what FAP is and how it changes a person. FAP is more than a mere chronic illness, it is more than a lifetime of coping and managing a disease. Every aspect of one's life is touched along with the potential for generational changes. In the midst of the horror that is FAP, inspiration and goodness is able to sprout. These buds provide deep wells of strength, compelling us to forge on, lighting our path.

I've shared my struggles with FAP throughout this time; the new and old challenges, haunting memories, overwhelming fears. There's more though to the true depths of FAP, it's easy to overlook as it's overshadowed by the medical, the now that constantly berates us for our attention.

FAP is my disease, it is what makes me me. I own this disease, I know nothing different. I am the last known in my family to have inherited this disease. I come from a long line of FAPers and I'm not sure if any of the descendants of my great uncles and great aunts have FAP as the family has lost contact. As a child, the only individuals I knew with FAP, who were like me, were my grandfather and my mother.

FAP is my taker. I endured the constant barrage of death taking loved ones since I was an infant but I was to be surrounded by FAP as well. Not only was FAP within my genes but it was attacking my mother while I was developing within her womb. My life was to be intertwined with the mixture of death and FAP in a twisted poetic sense. Shortly after my birth, my mother discovered she had stage I colorectal cancer. At 3 months old, I nearly lost my mother to FAP and the cancer it brought. Real or not, I have always had the vision of myself as an infant sitting or lying atop my mother's stomach while visiting her in the hospital as she fought for her life. Years later FAP took my grandfather from me - he survived colon cancer but decades later developed stomach and esophageal cancer courtesy of FAP.
FAP doesn't end with the removal of the colon. The polyps often spread, we're at risk of associated cancers and other complications. There is no security with FAP. These complications limit my everyday life. Food and activities are my enemies, easily upsetting the delicate balance of my stomach and my body. Stress and lack of sleep aggravate my symptoms further creating obstacles. Everyday is a new day, a new race for the end of the day onto the next. No longer do I have easy choices, I am forced to make some of the most difficult decisions I have been faced with and as a result long time dreams have been stolen from my grasp. I can no longer think of the present only or what I want, I must take into consideration the greater good for the long term. Decisions I am still preparing to disclose that have ripped apart my heart.

Somehow, FAP has also become my giver. In the course of changing my life with ongoing medical issues, trials, and even near death, it sent me on a road that I'm not sure I would have traveled without the guidance of FAP. Amidst the landmines, FAP gave me a beaten path that led me to a beautiful oasis. I couldn't be more grateful for the treasures of my life. I have found blessings around every corner - through my parents, spouse, friends, school, and employment. FAP gave me a compassionate understanding, strong will, incredible sense of determination, and need for security. This combination has driven me throughout my life to conquer my goals. I have managed to achieve the goals I set forth and continue efforts to reach new goals. My doctor, parents, and I were uncertain of what my body would withstand. Without disability accommodations with my schools, I wouldn't have been able to complete high school or college as scheduled. My first attempt at full time employment was a failure; the stress crippled my body. I will never forget the lessons I learned and the skills I gained. With each trial, each failure, and each success I withdraw information about myself necessary for my survival so that I may try again and reach higher. FAP even shaped my career, steering me into the medical field with the intent of improving medical experiences for others. I am amazed by where I am in my life now. Although I would have easily made it here without FAP, the journey is that much more beautiful and triumphs that much sweeter because of the obstacles set forth by FAP.

In spite of my triumphs, FAP and fortune are not always so kind and can change directions without notice. We can't be safe guarded forever from the complications of FAP. Many are lost to the devastation of FAP and there will be many more. This is not an easy battle to win and we are at a disadvantage due to the rarity of FAP. Too many of us have doctors who are unfamiliar with FAP and attempt to lead us in the wrong directions in our care. I have fought to end FAP in my family. Now I would like to expand my fight and join the ranks of others battling to end FAP for future generations, prevent the development of colorectal and associated cancers and reduce or eliminate the other risks and complications for present FAPers.

It's these personal touches and steering by FAP in my life that led me to launch the FAP Research Fund Fundraiser. My hope is to launch this fundraiser regularly in partnership with National Organization for Rare Disorders. I have had the life long goal to change the course of FAP so that others close to me may not suffer as I have, I take this hope to the community now. As a community, we are stronger. As a community, our impact is greater. I ask you to join me so that we may fight along side one another against this disease.



www.CafePress.com/LifesAPolyp

Treatment Choices

Individuals share a vast depth of life views of varying degrees that include differences of opinions and needs regarding medical decisions and choices. I find this to be the beauty of the human experience. We have been given the gift of free will and decision making.

So in medical situations, how do we know what the right treatment choice is?

With any medical diagnosis we are typically presented with treatment choices and we must decide what is the best choice for us. Even when all factors are the same among individuals, a particular treatment option may not be the best choice for another individual.

Life experiences, spiritual beliefs, world views, prognosis and current health all contribute to the medical decision making of an individual. There is a lot to take into consideration to determine the best option for a particular person. It's common to see others within the health groups asking about others experiences with various treatment options for FAP as they debate the options provided by the doctors. Learning about the experiences of others, knowing what to expect with each treatment option is a great way to gain more information than a doctor is able to provide.

I didn't know anyone else outside of my family with FAP when I was a newly diagnosed child. I don't think the different treatment options of ostomy, jpouch, straight pull thru, etc. were discussed with me. I was 8 and I can understand why I wouldn't have been included in the discussion. However, as I grew I regularly inquired regarding other treatment options to reverse the ostomy I had been left with after serious complications courtesy of my surgeon. My quest for a different solution was understood by my doctor and when the opportunity to give it a try became available, my doctor and my parents left the decision to me. I was 14 when I started preparation for an ostomy reversal with a straight pull thru. I knew the risks, a reversal may not be possible and with any surgery there are always risks of death or other complications. Fortunately for me, my parents and my doctor respected my desire and my need to take the risk. A reversal was all I wanted, it was all I had thought of for the previous 6 years. I think my doctor and my parents realized the depth of my anguish and despair, I had to take this risk or I would never be happy not trying. Following a successful reversal, I was faced with several years of torture trying to maintain my straight pull thru due to adhesions. There were times I was ready to stop the fight for life. There were times when I knew my body was about to give out on me and I said my goodbyes to my parents. I survived through it all though.

And when I look back, I wonder...if I had said to stop the fight and let me rest, would my wishes have been respected? Would I have been given the same respect and support I needed for my previous medical decision if I had made the treatment choice of not receiving treatment?

I hope my parents and my doctor would have respected my wishes. I believe everyone has a point when too much is too much to ask anymore and a person knows what that limit is when the limit is being reached. I believe in freely making our own decisions and respecting that.

I am filled with terror, mental paralysis, and I experience a rapid heart rate with the mere thought of being forced to undergo a medical treatment I did not choose, like the young lady court ordered to receive chemotherapy. I've spoken about a very dear, close friend of mine who committed suicide due to his experiences with Fibromyalgia and Ulcerative Colitis. I wish that he hadn't taken his life, I miss him everyday and I will forever cherish the time we shared and memories of him. I, however, cannot be angry with him, I cannot resent him for his choice. I wish his choice had been different and I wish we all could have helped him more. But I understand the desperation, anguish, and pain that he must have been experiencing that he tucked away. And because I understand, I can't do anything but miss him and wish I could change it all for him. I am not by any means saying that had I been aware of his decision to commit suicide that I would have encouraged him to do so. I'm simply saying, I understood his struggle. And that's something everyone benefits from, to be understood.

I've been blessed with fairly stable health over the last few years and I hope this will continue. When my health changes once again, I'm not sure what choices I will be faced with or what choices I will make. All I know is that there are choices that I don't want for various health conditions and I am counting on my wishes to be respected. I completed an Advanced Directive with detailed instructions pertaining to my wishes many years ago and I regularly discuss my medical wishes with my family.

Medical decisions are never easy and living with those decisions isn't always easy either. There will always be risks and side effects of any medical decision we choose. We have to know what we believe is the right choice for us.

Curve Balls

Energy is a funny thing. It changes rapidly, without notice. And yet, even at our lowest we somehow manage to summon enough strength and energy to at least do the bare minimum of what's required of us. And then we collapse.


I've fought with energy on various levels since my colectomy that left me requiring iron and B12 for the remainder of my life. Even with iron medication 3-5 times a day, I have yet to reach a normal hemoglobin level again since that first surgery. With the use of daily microlozenges, I've achieved and maintained above average B12 levels.


And yet, my energy is just as much of a roller coaster struggle as it has been all those years ago. Oddly enough, even in my sickest years 8-12 years ago when all I could manage was to complete my studies and my work hours, there was an abundance of times that I remember as having more energy than I have now. I don't feel old, I'm only 29 and yet when I look back on all the various activities that took up every moment of my days for years, I become exhausted just thinking about it! I can't even force myself to maintain as busy of a schedule as I did 6 years ago!


At my very worst, I went to school and work only and I slept every chance I had. At my best, I worked part time, attended school full time, attended sorority events, college activities, and family gatherings with energy to spare. I went out three nights a week with friends, staying out until 3-4 in the morning and rising again by 7 am to start the day all over again. I don't remember resting any except for during the very worst times. I realize my memories become fuzzy after a while, not just due to age but more so as an effect that is associated with my PTSD and coping mechanisms. My energy must have been at higher levels during those years. Otherwise, how did I participate in the various activities demanded of me?


Presently, I am astounded by myself when I am able to participate in activities of chores, hobbies, or social outings after work anymore. Most nights I come home after work and veg on the couch, recuperating from the events of the day. My sleep cycles further affect my energy levels. Increased energy when I'm able to sleep and lower levels during sleep deprivation periods. I question how I managed such full schedules just a few years ago, I'm amazed at what I was able to accomplish on a daily basis. Even a year ago I engaged in more activity by balancing a full time and part time contract job. Now the thought of even PRN work makes me groan with exhaustion. It takes a while to face the truth sometimes. Things we don't want to admit, things we want to blame on our illness but some things we just can't lay at the feet of FAP.
 Slowly I've come to realize that yes, I did have more energy when I was younger and whilst FAP and my health drain my energy daily, I also have a depleted source of energy due to aging. Oddly, this has been a test of acceptance for me. I didn't want to admit that I'm already experiencing normal aging process. I still look incredibly young for my age and within my mind, I still see myself as 26. I actually forget I'm 29, getting ready to stare at 30 in just half a year. I'm accustomed to bothersome symptoms occurring as a result of the FAP, not a normal process that occurs to healthy individuals too.

Living with a chronic illness complicates any situation and blurs the lines between normal and abnormal. So often it's difficult to distinguish the cause of a symptom as related to our illness or related to normal processes. With these blurred lines, it becomes further difficult to notice "normal" symptoms versus the abnormal symptoms that fill our world that we have become accustomed to as a normal reality. Our minds flood with multiple questions in an attempt to identify the source of symptom changes. Is our health declining, is this a flare up, is this to be expected, is this a sign of something worse, could this be an additional condition? It takes us years to adapt to FAP and the associated issues, years of learning what our new norms are, how and what affects us, what is required to recuperate. In spite of our expertise in how our bodies work, a curve ball always presents itself. We become masters of the curveballs, juggling them with our typical issues; adapting, coping, growing...surviving.


A curveball isn't always big, they come in small sizes as well. Regardless of size, they throw us for a loop when we're least prepared for the change. Grab hold of the curveballs and throw them back at life. Prepare yourself the best you can for the next one that is heading your way.

If Only My Doctor Knew...

Most of us have things we don't completely share with our doctors. Things you don't worry about and don't find necessary to disclose. You get to a point where you know you're fine but you don't want to rock the boat with minor details or you don't want those minor details to make you not fine. You find your balance, when you know you're beat and you have to fess up to your doctor for help and when you can let it slide and it'll work itself out.
Case in point, my doctor freaks about some things. Granted, some are understandable. Some I tend to disagree with and let the information slide.


She's strongly against her patients eating sushi or getting tattoos due to risk of bacteria and infection. Now I won't get a tattoo but I will not give up my sushi. And so I keep that to myself and we're both happy...me with a tummy full of sushi and her thinking I'm not at risk of food poisoning from sushi.


Every visit my doctor asks me how many times I use the restroom. I've learned over 20 years, if I tell her 6-8, she doesn't like it but accepts it. I never actually counted, I just made a rough guess and learned that 8-10 times a day answer caused my doctor freak out and talk about having an ileostomy again. For both of our sake's, I stick with the 6-8 story. But then one day, I actually counted for a full 24 hours. And if I told my doctor that my average 24 hour period is 15-20 bowel movements...she'd really, really freak. I'll go back to an ileostomy when I feel it's needed, not before. And honestly, I'm ok with my 15-20 bathroom trips, I'd rather have that than too few and feel constipated and bloated.


Another frequent question she has is how many bloody stools do I have. It's hard to tell because it's not a regular occurrence but when it does happen, it doesn't worry me. I've learned that if I don't or am unable to use the restroom for a long period, my intestine will become irritated and bleed. It typically lasts a few hours, always less than 8, and it's over. Only today has me a bit worried to be honest. I've been having bloody stools for 24+ hours now, I don't remember this ever occurring for such a long consecutive time. I'm not rushing to call my doctor though, I'm going to try to let it slide. But yes, if it continues for the next 4 days, I'll call my doctor on Monday and fess up. Because I will have to admit that 5 days of constant bleeding is a problem. For a couple reasons I'm really hoping this will stop before Monday though so I won't need to share this bit with my doctor. I'm pretty sure she'll make me have a scope if she knows about this and I don't want this to be a regular question/concern to discuss during visits.


An instance I don't think I've ever actually told her is that I get overheated rather easily, particularly more so since the last year. I've gotten where if I'm inside during winter, I'm usually hot. When I'm over heated, I enter a daze where it takes a lot of effort to walk or talk, I'm sweaty and clammy, I feel like I've entered a tunnel yet my vision is fine. It takes about 3 hours before I feel normal again after this happens. This has happened twice this month and the last time I discovered that my blood pressure and pulse rate were both high. A nurse advised this could be caused by dehydration. The overheating happens regularly yet infrequently enough that I've never thought to tell my doctor. But now, I'm curious about the blood pressure connection and I'm even wondering if my blood pressure fluctuates often without knowing it until I'm overheated.


My next visit is in February and so the dance of  picking what I find necessary to disclose and what I will let slide will occur once again. We shall see how the dance turns out.

The Worry Wart and The Carefree

Twice in one day I had two different people tell me that they worry about me and my health. I appreciate the care and concern of others but I don't hear the literal words" I'm worried about you" often. So infrequently so, it actually sounded strange. And in that moment, I asked myself why and do I even worry about my own health.

I suppose I do worry but not in the conventional way. I don't think about my future health very often. The only time I truly feel like I worried about future health was when I had my ostomy and was desperate for a reversal. I thought and worried about my future health and hope for a reversal opportunity everyday during those six years with an ostomy. I think of death often, however, the only concern about death I have is pain and outliving my husband. Otherwise, I feel ready for my time. I don't recall worrying about future health even during my worst struggles to survive. I didn't have the energy or strength to worry. And then it just...became normal.

I find myself worrying most about my activity ability. I worry days, weeks, even months ahead of time about activities I want to participate in but am at risk of not being able to complete due to how my body may be acting at that time. For instance, I've been worried that  my body will interfere with my hunting chances this weekend and my excursions on my cruise in 8 months!

There's always so many variables to consider in relation to food, drink, short bowel, and restroom access. I must be careful of when, what, and how much I eat or drink before, even up to the night before, an activity or I may suffer from short bowel, cramps, and pain.
But even these worries have become second nature as I proceed with strategizing my day around the activity and demands it will place on my body.

I've said before, I could be considered to be in a place of denial, resignation, or acceptance about future health and health risks. I did, however, request to restart the Sulindac in efforts to reduce polyp growth and aid in management of my degenerative disease within my neck joint. Perhaps I'll even undergo another scope or MRI with contrast in the next few years again! I probably should worry more, but at this point in my life...I just don't have it in me.

Worrying is just exhausting though. We can worry ourselves to death with unceasing focus on our risks. It's all a fine line we must try to balance. Between taking care of ourselves and not dwelling on the problems and risks. Yet most of us don't balance, we lean or fall to one side before we pick ourselves back up to try to walk that tightrope once again.

What do you find yourself worrying about? Are you a worry wart or are you carefree with your health and future health?

Wish List

Do you remember the last time you felt normal, even for your new normal? When those days are so far apart, it's hard to remember the last time you felt good without any symptoms bothering you at the moment. I long for those days. It's usually one thing if not something else. It's rarely ever just a feel good all around day. Such days happen so rarely that my mind doesn't register it for a while, I'm so accustomed to experiencing pain of some sort that when pain is absent, it's almost unrecognizable. Those days are to be cherished. Those days are on my wish list.

I first had this thought this weekend when my eye must have gotten an irritant, that I haven't been able to find, in it as it's been painful, watering and even sensitive to light for 2.5 days now. But little did I expect my wish list to require an adjustment.

I've previously discussed my neck issues that have plagued me all summer long and what becomes the norms of our chronic illness here. This morning I had my physical therapy follow up after doing so well last month prior to a couple neck flare ups over the last couple weeks. I brought more of my medical records for my therapist to read. While discussing my body's inability to absorb nutrients, I learned a few things that have left me devastated today:

1. My body's impaired ability to recover from injury, even something slightly strenuous such as walking
2. The damage to my neck has resulted in a chronic condition and although several factors contributed, the fact that I was improperly performing leg lifts was a large contributing factor. Which means to me, I did this to myself. I caused my neck injury and now I will have to live with it for the rest of my life.

I'm well aware of my inability to absorb and maintain nutrients, I've been fighting this the majority of my life. But I never thought much of my recovery ability or recovery period. It makes sense, it all connects, but my attention has never been drawn to it. With my health issues, my body takes twice as long to recover from anything. Because of this any type of exercise I do participate in, I need to cut in half and double the recovery period in between increasing the amount because my body can only take small amounts of strenuous activity. Again, makes sense. This is why I do well with activity such as Yoga, Pilates, and Tai Chi when my stomach will allow participation.

This extended recovery period also applies to my neck injury. Although I can achieve a decent level of comfort, I'm not able to make all the symptoms disappear. Even during the best week I've had this summer, I could still tell that there was something wrong with my neck, although minimally bothersome. And so, whenever my neck becomes agitated, it will take about a week to recover. This whole time, I expected my neck to recover and that would be the end of it. I never once let myself imagine that I would have a new chronic condition. I'm used to all the negative symptoms that the FAP has caused, I deal with it. I don't know any different and I'm prepared for what's likely to come down the road with the FAP. But the news of chronic neck pain for the rest of my life has thrown me into a self pity crying party as I grapple to adjust to this concept. I wasn't prepared for a new chronic diagnosis and the symptoms. My whole life centers around FAP, not other health issues and especially not other chronic conditions. And perhaps, what makes the coping harder is that I blame myself. If I had never started the leg lifts, I probably wouldn't be in this position or at least not this soon in my life. If I had only known the risks, I never would have started the exercise. I take health risks with my FAP and the cancer returning and I own that. I don't take polyp growth reducing medications and I refuse colonoscopies. But I know the risks I'm taking. I know that when my cancer returns, I'll most likely find out later in the game than if I would undergo colonoscopies again. That's a risk I'm willing to take at this point in my life but I know about it.

It's something else when you don't know the risks and engage in a behavior/activity that causes you great harm because you didn't know the risk or didn't think about the possibility. You become consumed with the "what ifs" and I'm so angry with myself right now. I'm angry and I'm devastated. I'm hurting, physically and emotionally.

And so I'm going to practice what I preach. I'm going to have my cry out but I will do my best not to live there. I will add minimal neck pain days to my wish list. I will cherish the days I feel good and I will recognize those days. I will hold onto the hope for those days. At the end of the day, we need that hope to make it to the next day and a lot of hugs along the way really help too.