Meditation Effects on the Brain

I attended a seminar through the Institute for Natural Resources titled Meditation and the Brain: Physiologic Effects, Mindfulness, and Mental Health. It was very enlightening learning about various methods of meditation and their effects on the brain that I will share with you below. 

3 Self-Care Habits That Can Be Started Today

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Self-care is one of the most important things we can do for ourselves and yet it is one of the most frequently neglected aspects by many of us. The practice of self-care is not just for mental health either, it is also for physical health as it's vital for helping to reduce health risks of stress, burn out, over working, sleep deprivation, poor diet and hydration and more. The beauty of self-care is that there is no right or wrong answer and there's a vast number of things that self-care practices can include, it's highly personalized for what works best for someone. There are, of course, a few main stays for overall well-being that are universal to meet our bodies basic needs that are often neglected as well. Below are 3 self-care habits that can aid in meeting 3 different levels of needs in Maslow's Hierarchy of Needs that he identified to be drivers for behavior and what makes us fulfilled.

A vital aspect of self-care that seems often difficult for many to achieve is adequate sleep. This is a basic need and is included the first level of physiological needs in the hierarchy. Without adequate sleep, the body and mind can become dangerously taxed to the point of serious illness. Developing good sleep hygiene is one of the best ways to improve one's sleep, particularly without resorting to medication. The CDC provides tips for improving sleep hygiene and provides information for connecting with the American Academy of Sleep Medication for more in-depth sleep education. 

Social needs are another need identified by Maslow on the 3rd level of love and belonging where connection and secure relationships with others is identified. Staying connected to others can be difficult when living with a chronic illness and far too frequently, depression in addition. With chronic illness, we often feel like a burden on others and don't want to ask for "even more" from our friends and family. However, this increases isolation, which in turn, increases risk for depression. With depression, the brain tells us not to do things, such as connecting with others, we have negative thoughts about our relationships with others and our needs, and depression is further reinforced. And so goes the cycle on repeat until something in the chain is broken. One way to help with breaking that behavior chain is to stay connected. Socialization has many additional benefits for physical health in addition beyond just mental health well-being and is easier to do now than it likely ever has been before with a variety of avenues thanks to technological advancements. 

Esteem needs are placed on the 4th level by Maslow where one earns esteem through self-worth, competence, independence, and dignity from within oneself and the respect or acknowledgement one desires from others. Achieving a true level of esteem, fully loving oneself in a healthy way, is not based upon physical appearance, possessions, or the opinions of others but rather how we value, love, and accept ourselves. How we view ourselves can affect our self-esteem and this can even be affected by the care we take in our personal appearance whether it's clothing, basic hygiene or more. When we engage in behaviors that help us feel like ourselves even when we may physically or emotionally not feel at our best, such behaviors can actually help to release dopamine and lift our moods. Unfortunately, chronic illness can negatively impact more than not feeling well physically or emotionally but also every aspect of the body, including causing damage to one's teeth. This has been a major concern I have with my esophageal dysmotility, especially when I was having chronic vomiting as not only does malnutrition impact teeth but so does vomiting. Being able to obtain dental guidance and treatments necessary to prevent or repair the damages of chronic illness is not necessarily easy though either due to expense affecting access to care. Similarly, to how there are vision centers that provide promotions and discounts, some dental centers do as well, such as this dentist in Florida. When I was married, before my then husband had dental insurance, we took advantage of similar promotions to at least be able to afford to obtain a cleaning and exam for him. Dental wise, there are also dental schools and free or low-income dental clinics that offer various dental services to aid with process of obtaining the dental care a person may require for good dental health. 

Whatever new for your self-care habit you're planning to start on, remember to specify realistic steps for achieving your goal and identify how you will know that you've achieved the steps and ultimately the goal of self-care. Doing so helps set us up for success when goal setting and part of self-care is also giving grace for setbacks so that we may stay motivated to continue our efforts. 

Finding or Establishing Support Groups

It can feel lonely when you're diagnosed with a rare disease, such as Familial Adenomatous Polyposis (FAP) or Short Bowel Syndrome (SBS). After all, these are rare diseases and so there isn't near the support or media coverage available as there is for well known, more common illnesses. Finding support can be increasingly difficult depending on where you live as well. It's more likely to find support if one lives near a large research hospital such as Michigan Medicine University of Michigan, Cleveland Hospital or Mayo Clinic. Finding support is easier now than it was 20+ years ago when I was diagnosed with FAP and SBS though with technology and social media.


I remember how important my local UOAA ostomy support group was for me after my first surgery that removed my colon and left me with an ileostomy for 6 years before having a straight pull thru. There wasn't usually anyone my age at the meetings but I was able to meet others outside of my family who also had ostomies. Their reasons for their ostomies were not the same as my reason or diagnosis but it was helpful to know I wasn't alone. My pediatric GI also told me about the Youth Rally for kids and teens with ostomies or other diversions for their bladder and bowel and I attended as a camper for four years until I graduated high school and I even went back as a counselor for two years. Between the support of my family, the ostomy support group, my friends and counselors at Youth Rally, and a therapist I was able to learn how to adjust and cope to life with rare disease and an ostomy. My local UOAA support groups even helped sponsor my trips to the Youth Rally and when I returned I was allowed to share my experience and pictures with the support group.


One can find online support for the rare diseases of FAP and SBS by doing a simple search on the web or on Facebook. There are several groups for both diseases including for colon cancer, ostomies, and reversals. A well established online group is Colontown with various neighborhoods to help meet the vast array of needs and conditions that are associated with colon cancer. However, what if you want a face to face group and there isn't one in your area?


Kevin helped establish a Peer Discussion Group for Hereditary Colorectal Cancer in Ann Arbor, Michigan and was kind enough to share his tips for establishing your own group. Kevin recommends:

• Locating and talking to a genetic counselor about your interest in establishing a group
• Start by searching for genetic counselors through this directory:
• NSGC Genetic Counselor Directory 
• Identify local medical facilities or hospitals that treat Hereditary Colorectal Syndromes such as FAP and Lynch Syndrome. The above HCCF Provider Directory may be of assistance with this as well
• Talk with a local genetic counselor about identifying doctors who treat Hereditary Colorectal Syndromes to discuss with your interest of establishing a group
• Identify a meeting venue such as:
• Hospitals/Health Centers
• Community Centers
• Cancer Support Community
• Speak with the program director at the potential meeting venue about establishing a group at their facility
• Identify a possible facilitator for the group. Some venues may have requirements for the facilitator such as someone with a social work degree or special training
• Create a website or social media group for your group. An online Facebook group should be monitored regularly for appropriate contact and is suggested to be a closed group for privacy
• Once a venue has been secured, communicate the group's details to Hereditary Colorectal doctors, genetic counselors, local papers and radio stations, social media sites, etc
• Quarterly presentations of topics of interest are recommended such as topic experts including:
• Genetic Counselors
• Hereditary Colorectal Doctors
• Dietitians

Keep in mind that it may also be helpful to get in touch with others who have established groups for any medical condition for guidance in the process, not only those who have established the same type of group you are wanting to establish. Having a partner to help in the creation of a group can be helpful as it is a lot for one person to take on in establishing and maintaining a group. Rural areas are less likely to have genetic counselors but perhaps there is one within reasonable distance or other individuals in the surrounding areas that may be interested in helping to establish a group.

Kevin has generously offered his guidance in establishing your own support group if you would like to contact him via email or phone: 734-476-7425

If you establish your own support group, share it with Life's a Polyp to help promote your new support group!

A Tribute to My Ex Husband

I don't regret my decision to divorce my now ex husband even though I wish our marriage had worked. But sometimes there is pain we can't overcome or it's not in our best interest to remain in a particular relationship. That was sadly the case for my marriage but I remain grateful for him. Too often we focus on our heartache and pain, forgetting what was good and what remains positive in spite of it all. Today I want to give credit where credit is due.


He is a kind man with an astounding heart. He is always there for a friend or family member in need. He works hard and cares about those around him. He was everything I was looking for in a partner. He did his best to always give me what I wanted or needed in our relationship. He listened to me and supported me, he provided me care when I was ill.

My ex husband and I are not friends, per say. I don't know what we are exactly. But I do know that if I need him, he's always there for me - from our 1st date to years after our divorce. We made a promise to each other when we separated that we would remain there for one another and he has kept his promise thus far.



Us with Zia and Ruhle

When we were together, we adopted two dogs - Ruhle and Zia. We loved them both dearly and they were extremely attached to both of us. When we separated, I took the dogs with me. I think he realized how much I needed them or maybe he's just that kind of a person. A couple months ago, our 1st dog to adopt together, Ruhle, suddenly passed away while staying with my ex husband while I was on vacation. He took care of everything for me with Ruhle's passing and we mourned together. Since then, I've adopted another dog to keep Zia company. They unexpectedly escaped my yard recently and I called my ex husband to let him know. I didn't expect him to do anything but I wanted him to particularly know about Zia missing. He was willing to drop everything at work and come help me find the dogs. Thankfully, they came home eventually.

He does more than just help me with the dogs too. If I need help with a home project, he will take care of it for me if I ask him. He works long hours but if I need him, he's there - whatever it may be, even if I just need to talk. He's always been like that.

I always say it's a shame what happened to our marriage. He was loyal and loved me deeply. He gave me everything I wanted and he was everything I wanted in a life partner. We were a perfect match. Like any couple, we both did things to hurt each other that we regret but we loved each other with all our hearts. Unfortunately, he made some life decisions that broke my trust and I couldn't recover from it. But I will always give him credit for all the good that he embodies. I have forgiven him and am not bitter toward him. He remains near perfect in my eyes. He is a good person and in spite of our divorce, I can't imagine my life without him in it in one way or another. We may never be friends again but we'll always be there for one another.

What We Need From You

Chronic illness is a challenge, period. It's a challenge for those who live with the illness on a daily basis, for caregivers of the ill person, and for those who are involved with the person outside of the home. Chronic illness often leaves those in its wake feeling frustrated and helpless. The ill person struggles to live daily life with the symptoms of chronic illness and friends and family are limited on what they can do to help the ill person. To make matters worse, those of us with chronic illness are often hesitant to ask for help from others due to feeling burdensome and are frequently at a loss ourselves as to what may be helpful. To help all of us, here's a list of things we need from you due to chronic illness.

We need you to be available.
Chronic illness can be extremely isolating at times, particularly if it is a rare disease. Depending on the diagnosis, it can be difficult to identify and communicate with others with the same illness. Social media has helped close the distance among individuals with the same illness but in person visits remain different from online communications. We are further isolated due to difficulty to physically leave our homes except for our medical appointments. Even when we want to visit with others we may not physically feel up to visiting regardless of the communication form. We frequently experience hospitalizations and may only experience encounters with medical providers. Your presence in person, on the phone, or online is a tremendous support to us when we are able to do so.

We need you to listen and encourage.
Due to the elevated risk of isolation among those with chronic illness, we are at higher risk for depression. We easily become frustrated, discouraged, and depressed regarding our health issues and daily struggles. Your willingness to listen to our concerns and to encourage us along the way has an immense impact on our mental health.

We need you to be understanding and forgiving.
Changes in our health and abilities often causes us to feel angry and frustrated as we are adjusting to chronic illness. Furthermore, when we don't feel well we may be ill tempered. We don't mean to direct our frustrations and anger toward others. A gentle reminder when we are acting unfair will help us to realize any damaging behavior and allow us the chance to correct any harmful behavior. Your understanding and forgiveness is paramount in this process.

We need you to help us feel accepted and loved.
Chronic illness typically means changes to our bodies and abilities that may not be visible to others but we remain acutely aware of such changes. We may have difficulty accepting such changes and become insecure and self-conscious of our bodies, symptoms we are experiencing, abilities, and our self-worth. We all want to be accepted by others and this desire may be heightened by chronic illness. Your acceptance helps us to accept ourselves when we are struggling with self-love and acceptance.

We may need your physical assistance.
Chronic illness is high maintenance requiring ongoing medical management that includes frequent medical appointments, tests, procedures, medications and more. These tasks are demanding physically and mentally. As abilities are challenged by chronic illness, we may require your physical assistance in the form of transportation to appointments, assistance obtaining and taking medications, household chores such as cooking, shopping, and cleaning. Changes in our abilities often leaves us feeling as a burden on others resulting in our hesitancy to ask for physical assistance even when it is greatly needed.

We may need you to help us find assistance.
Chronic illness can easily create financial difficulty due to inability to work temporarily or permanently. Our finances may easily be overcome with medical expenses. Locating appropriate resources is not an easy task when one is sick. Therefore, your assistance in locating and applying for resources may be of great service to us during a time that we are having difficulty physically or mentally functioning.

We need you to help advocate.
As a patient, we benefit from advocating for ourselves but your advocacy on our behalf would also be advantageous. We may not always have the physical fortitude to speak up or we may forget questions to ask. You can help us by attending appointments with us and listening to the information presented by medical providers. Additionally, advocacy efforts on a larger scale directed toward public awareness and legislation are stronger with participation by patients and loved ones.

We need you to help us enhance our physical comfort.
Chronic illness often is exacerbated by physical symptoms that are distressing and even painful. We've learned little tricks to help ease our discomfort such as using heating pads, rubbing a painful body spot, or even taking a nap. When you are near, you can help by handing us objects such as a heating pad or our medication so that we may limit our movements, particularly when movement is painful. Sometimes a gentle rub on the afflicted body part or even something as simple as playing with our hair can be soothing. We often fight fatigue that negatively affects our sleep schedules. In such cases, helping us limit our nap time will help us maintain an appropriate sleep schedule while boosting our energy.

We need you to take care of yourself.
Lastly, we realize that providing care and comfort to a chronically ill person can be difficult on others and want your well-being to be taken care of as well. Caregiver burnout can be detrimental to all involved and the last thing we want is our illness to be harmful to you. We understand that one cannot provide around the clock care for us and maintain one's own well-being. Self-care is important for everyone, not just those with chronic illness.

We may not say it enough but all your efforts to support and assist us in the walk of chronic illness is greatly appreciated and we are far better off with you in our lives than without you. We thank you for all your efforts.

When I'm Asked How I'm Doing

When you have a chronic illness, sometimes it's hard to know how to answer when asked how you're doing. The odds are, we're not doing very well. We have daily symptoms we're contending with and most of the time we don't feel well but we don't want to admit that to others. We question the sincerity of the question and what is considered to be too much information when we answer. So we lie usually instead of answering the truth - the truth being that we aren't doing well.

I always question does someone really want the truth or just the brief, expected answer so that conversation can move along. I rarely answer honestly. I entered the habit of answering "okay" or "good" even though it was a lie. I was tolerating the moment even though internally, I felt like death warmed over.

I became tired of answering with a lie and a superficial glancing over my daily health. I wanted a more sincere answer but I also didn't want to dwell on the answer, particularly if my well being is only being sought after on a superficial level, out of societal nicities. I hate the looks of pity when I answer with a truthful "I'm doing horrible" type of answer.

I tried out different answers that felt genuine for me but none felt right. To say I'm functioning is true but it invites additional questioning and feelings of pity I thought. I'm alive didn't work well either for me. I finally settled on "I'm hanging in".

I'm hanging in provides a truthful answer without the invite for pity from others. It allows for further conversation but doesn't require additional questioning. It's clear and to the point - I'm managing but I could be doing better but I'm not worse either.

How do you answer others when asked how you're doing? What have you found works best for you? Share with me.

FAP and Lynch Syndrome Conference

The University of Michigan sponsored a Hereditary Colorectal Cancer Family Day this November in Ann Arbor, Michigan. This wasn't the first year for the family day, but it was my first year to attend. I asked my mother, who also has Familial Polyposis (FAP), to attend with me. Although she was reluctant at first to travel the distance for a two-day trip, she was ultimately glad she attended.



Me and my mother, Ina. Travis, Carleton, and his son Kevin

We hopped on a plane on the morning of Friday, November 10 and made our way to Detroit, Michigan where we were warmly greeted by Kevin, a fellow FAPer and advocate for FAP and Lynch Peer Support Group in Michigan. That night we were privileged to enjoy a small meet and greet with fellow FAPers - Kevin, his father - Carleton, and Travis with Hereditary Colon Cancer Foundation.

The following morning the conference started, and we learned about a variety of topics related to Lynch Syndrome and Familial Polyposis. There were an estimated 60 attendees this year - primarily from Michigan. There was a variety of speakers including genetic counselors, doctors of Gastroenterology, Internal Medicine, Surgery, a Dietitian, and Travis.

We learned a great deal of information during this one-day conference. As a child, I had genetic testing completed to confirm my Familial Polyposis suspected diagnosis, but I don't remember ever talking to a genetic counselor afterwards. I visited with one of the genetic counselors to learn more about this area that I hear others talk about frequently. Genetic counselors help individuals gain access to genetic information and technology, genetic testing and diagnosing, and understanding hereditary conditions. They also can help an individual with a hereditary condition obtain testing and counseling for that individual's family members to determine who else in the family may have the condition.

My mother and I weren't very familiar with Lynch Syndrome before this conference. We learned about Lynch Syndrome from genetic counselors at the University of Michigan Cancer Genetics Department and Dr. C. Richard Boland, himself, who found the gene mutations responsible for Lynch Syndrome. It was interesting to learn that there are 5 different gene mutations that can occur to result in Lynch Syndrome and depending on which gene mutation one has, it will vary the type of cancers the person is predominately at risk for developing. Both syndromes have autosomal dominant inheritance meaning an individual has a 50% chance of inheriting the disease if one of their parents also has the gene.

Lynch Syndrome is also known as Hereditary Non-Polyposis Colon Cancer as the colon isn't carpeted with polyps in the 100s to 1000s as is the case with Familial Polyposis. Although both syndromes have increased risk for other cancers, Lynch has a high occurrence of colorectal cancer, endometrial, and ovarian cancers as well as elevated risk for stomach, liver, urinary tract, central nervous system, small intestine, and sebaceous gland cancers. FAP on the other hand has elevated risks for cancers of the thyroid, small intestine, liver and smaller but still elevated risks for central nervous system, stomach, pancreas, and bile ducts.



Adenomas (Pre Cancerous Polyps) can look different

Screening for cancers is essential for adequate care of Lynch Syndrome and FAP and this includes regular endoscopies and colonoscopies for cancers of the GI tract. Doctors John Carethers, D. Kim Turgeon, and John Byrn explained the colon cancer processes, technology, and techniques used for screening, colonoscopy preps, and surgeries involved for those with both conditions.



Adenomas, precancerous polyps, can vary in shape and size which is why the colonoscopy prep is so important to help the doctor properly identify polyps within the GI tract. There are various prep options including drinks, enemas, meal preps, and pills to help ensure proper cleansing preparation.

Michigan Medicine's Dietitian explained ways to help reduce the risk of colon cancer with healthy eating habits and exercise. It was recommended to:

For the best results, your stool should become light and transparent,

like the example on the farthest right

• Maintain a healthy body mass index
• Exercise for at least 30 minute a day
• Avoid sugar -energy dense foods and drinks including alcohol
• Eat a variety of vegetables, fruits, whole grains, and legumes
• Limit red and processed meats

Grilling or smoked meats have also been shown to increase risk of cancer as charred or burned meat contains carcinogens. Also, the use of a multivitamin, calcium, and vitamin d supplement have been shown to help reduce cancer risk although should be discussed with your doctor.

As genetic counseling plays an important role in identifying hereditary conditions, it is also important for communicating with one's family members for their own genetic testing. We heard from a genetic counselor and a patient panel about their experiences talking to their family members about genetic testing and the assistance received from genetic counselors with family members.

Travis, with Hereditary Colon Cancer Foundation, shared his experience with FAP and ways to advocate for awareness and education of the hereditary colon cancer syndromes. Dr. Elena Stoffel closed the conference with learning about medical advances to prevent the need for chemotherapy such as immunotherapy and gene therapy.

The University of Michigan, Michigan Medicine Department made registration available for a research study of microbiome identified through one's stool and a genetic registry. My mother and I decided to register for both projects.

The Family Microbiome Project looks at the bacteria among family households - families with and without Lynch or FAP. Although this project is currently enlisting family households, they are interested in individuals for a future research project.

The University of Michigan Cancer Genetics Registry has enrolled approximately 6,000 individuals from 4,700 families. To enroll an individual simply needs to have a hereditary cancer syndrome or personal/family history that is possible for one. Enrollment includes consent, medical and family history questionnaire and potential for a blood or saliva donation for research purposes. One doesn't have to reside in Michigan to enroll. Those registered are also notified of events such as the Hereditary Colorectal Family Day. If you're interested in enrolling or learning more, contact Erika Koeppe by email or calling 734-998-1274.


If you're in the Michigan area and interested in a support group for Lynch or FAP there are two support groups to choose from:

• Gilda's Club of Greater Grand Rapids - Alice 616-885-6426
• FAP and Lynch Syndrome Peer Discussion Group - Kevin 734-476-7425

If you're interested in establishing your own support group, read Kevin's tips here: Finding or Establishing Support Groups

My mother and I had a great time attending the conference and would encourage you to attend any future conferences for networking and educational purposes.
It was incredible being in a room with so many others with the same condition at once!

Chronically Dating

I had left behind the dating world for nearly 7 years and I thought I was leaving it behind permanently. However, after my marital separation and divorce I found myself once again dating. I was suddenly thrust back into situations calling for me to decide when, what, and with whom to share the details of my chronic illness.

I previously shared how I've chosen to disclose my health and particularly my past with an ostomy. I am much more confident in my disclosures than I once was when I was younger. I'm now comfortable with someone not accepting me because of my health. I've learned that if another can't accept my health, then I don't need that person in my life. In fact, events of the last year have lent to my improved ability of letting go in general.

Dating after divorce with a chronic illness has been interesting to say the least. I've become increasingly open about the details of my health and illness with suitors and I've been met with overflowing acceptance. I've always been accepted by those I've shared my health with previously, however, this time around the dating world has been filled with even more acceptance. Perhaps dating in my 30s is part of the difference as we tend to view the world, ourselves, and others in a different light than we did in our younger years. This may also explain the differences in reactions I've experienced since re-entering singledom.

Although I've been accepted by each partner, there were some very different reactions. My suitors ranged from "I'm ready to take care of you in whatever fashion required" to "I can't lose you early on in your life". While one suitor was eagerly ready to spend whatever amount of time my life holds for me caring for me and my health needs another suitor was so concerned about losing me early in life due to the likelihood of cancer that he wasn't sure he would be able to handle a romantic life with such a very real expiration date.

I was shocked to actually encounter someone who was so concerned about being able to handle the real possibility of my own death at a relatively young age. I am accustomed to death, particularly the threat of my own that sometimes I forget what others may feel or experience in relation to my own mortality. I also wondered if this person would be the individual those of us with chronic illness all dread: the person who leaves because of their own inability to handle life with chronic illness.

I'm not sure how we guard ourselves against such individuals as I haven't truly been in such a situation. Guarding our hearts is a wise move to a certain degree. At some point, we either must trust our partner or we must let go. The degree to which we scrutinize our potential life partners varies from person to person and experience to experience. I can only urge others to be aware of their own comfort levels and move within those boundaries. We aren't required to move past those boundaries until we are ready, whatever those boundaries may be. Dating isn't always the easiest lifestyle and chronic illness can complicate dating life. However, I view loving yourself first and finding your own happiness as a fundamental key to tackling life, including the dating world. We don't need to seek love and acceptance from others when we find love and acceptance from within ourselves. Once we have conquered this feat, any love and additional acceptance from others becomes a shared joy rather than a request for validation and esteem that we have yet to afford ourselves.

I found part of accepting my life and in particular my divorce was to also accept the possibility of spending the remainder of my life alone. With marriage, I had a lifetime caregiver if needed. With divorce, I gave up that lifetime caregiver for a life of uncertainty on my own terms. I don't know what the future holds, but I've accepted the unknown. I do know that no matter what is in store for me, I create my own happiness and I can survive. The dating world is no different - we hold within ourselves the power for happiness and survival.

Standing Together

Today was a physically taxing day. I woke up not feeling my best and it worsened as the day drew on. I ended leaving work early due to stomach pain and bloating. As soon as I returned home, I crawled into bed to rest. I was worried about feeling better in a few hours. After all, I had to prepare for an evening interview with Lee Silverstein, The Colon Cancer Podcast.

It's amazing how much rest the body can gain from simply lying in bed for a couple of hours. My body knows that once it's lying down that it doesn't have to work hard or stress. My mind can relax with my body and together they can begin to mend themselves. And it worked; although I don't feel like completing projects this evening, I am left feeling energized with adrenaline and hope for the future.

I must give credit for the rejuvenating energy to my conversation with Lee though. Sometimes it's hard for me to speak with others. I often find myself emotionally drained after visiting with others. Perhaps that is more to do with my line of work as a medical social worker. Sometimes talking is the last thing I want to do after a long work day of focusing on and assisting others with their life issues. But after conversations such as tonight's conversation with Lee, I'm reminded just how much we need others in our lives. Support, whether it is online or in person, is an integral part to life and for our well-being.

The internet has become alive with multiple support resources for every issue imaginable. I'm amazed by how tangible support is now than what it was even just 10 years ago. With a rare disease, I didn't know anyone outside of my family for years with Familial Polyposis. And now there are social media groups and websites solely devoted to Familial Polyposis. And the case is the same for countless other rare diseases.

As wonderful as these online support resources are, we mustn't forget how important in person support remains. It's easy to take the easy way of communicating digitally with others through text and online messaging services but there still remains nothing quite like in person visitation. In person visitation forces us to reduce our isolation that we often succumb to with chronic illness due to how debilitating our health symptoms can become. In person we can give and receive physical support - hugs, shared tears, even household assistance.

In person visitation can be physically stressful as it forces activity upon us yet I'm always glad I forced myself to leave the house or prepare for a visitor afterwards. It reminds me of the importance of friendships. Not everyone we talk to has to have chronic illness so let us not abandon our other friends.

If you're isolating yourself because of your health, you can break through the isolation. Remember, isolation can lead us to depression and can worsen already existing depression. Depression will tell us not to interact with others and by engaging in activity we loosen the bonds of depression. However, I understand how daunting activity and socialization can be, especially under the stress of depression. Because of this, I start with a small, achievable goal as this reduces the feeling of being overwhelmed and with each small step, the next becomes easier.

We all need support, no matter who we are or what we're facing. Reach out when in need and reach out to another during their difficult times. Socialization is a wonderfully rewarding gift we can give each other.

Don't Shut Me Down

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

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

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

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

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

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

From a Child's View

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

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

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

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

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

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

Defending Invisible Illness

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

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

Mine just happens to be invisible.

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

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

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

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

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

Chronic Fatigue

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

Common symptoms of anemia are

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

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

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

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

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

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

When You're Alone

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

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

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

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

 Making that choice was the hardest part.

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

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

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

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

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

Let The Fire Burn

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

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

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

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

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

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

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

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

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

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

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

Self Care

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

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

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

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

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

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