La Mémoire Noire

La Mémoire Noire or The Dark Memory is a letter series written to my first surgeon. The man who caused everything ultimately in my life to reach this point today. I was to have 2 surgeries beginning at the age of 9 and his surgical errors altered the course of my life. Ultimately, I instead would require 7 surgeries and experience repeated life-threatening complications resulting in medical PTSD, suicidal and homicidal ideation. This is trauma I am still trying to heal from nearly 30 years later that has touched every aspect of my life and how I react, view, and process the world. I have a lot of hate and anger for this man. As part of my therapeutic efforts to heal, I am writing this series to him. It is my raw, unedited thoughts and feelings towards this man and all that transpired following my first surgery that he performed. It will be a series that is periodically updated as I process each letter, my trauma, and continue inching towards healing embodying full love and forgiveness for myself and others.

Living My Best Life

I started this article as 2022 was coming to a close and I was reflecting on all that has transpired and what is presently at hand. I only now feel ready to publish it though as it has been a pretty intense 6 months of 2023 already! As I was reflecting on 2022, I had the following questions and answers and I find myself asking them again now in June of 2023.

Has this been the best year for me? No, absolutely not. Has my life changed for the better this year? Absolutely it has. This acknowledgement led me to the realization that I was and still am living my best life right now. And I'm celebrating it with immense gratitude.

As a result of my medical PTSD, I've struggled with periodic bouts of depression and intense anger with a longing for death that I've experienced since my first surgery at age 9. It didn't help in high school during one of my near-death experiences that I was overcome with the deepest sense of peace I've ever encountered. This peace has left me longing for death even more ever since. So, joy wasn't something I regularly experienced or even thought about, much less sought. To me, life has merely been a waiting period full of suffering. This isn't to say that I've lived an unhappy life. Rather, it's often a life overshadowed by fear - fears of losing my parents or other loved ones, fear of uncertainty, fear of emotional and physical pain, fear of the past repeating itself. 

2021 forced me to dedicate 2022 to focusing on my mental health, learning self-care and allowing self-growth. I started 2021 with emotional turmoil from reliving my own medical traumas while writing my own medical story and my children's book about FAP for publication. This was an intense, emotionally exhaustive and long process - much more than I had anticipated. I ended the year with my 8th abdominal surgery and new, unexplained debilitating chronic pain that would take over 6 months for a diagnosis of Abdominal Migraine. I also was diagnosed with Fibromyalgia around this time, a new diagnosis for me that I haven't even given any thought to until recently. 

I began 2022 with resuming anti-depressant medication and counseling. Shortly after, within the span of a month, two of my family members who had helped raise me, passed away. Not long after that, another family member who had helped raise me moved 2.5 hours away - she was no longer physically close to me in proximity, and it was as though I was losing her too as I was losing those that my childhood life was so firmly founded upon. I was taken back to the loss of previous family members in the early 2000's that shook me to my core. 

In 2022, I added metaphysics courses and EMDR therapy for trauma work to my CBT therapy. While life significantly improved upon appropriately managing the pain of Abdominal Migraine, the end of 2022 wasn't easy either. I started experiencing regular vomiting with the reason only just being determined in May 2023 as that of esophageal dysmotility. I lost another family member and am preparing for the loss of yet another family member. And my trauma work to process not only my past trauma but also my future fears is extremely emotionally difficult work. 

And yet, I'm at a place in my life that I can't deny is the happiest time of my life. I'm cherishing every moment with my parents. I have built a family and life with my life partner, his son and family. I've regained my quality of life after enduring a year of debilitating pain. I'm learning and practicing self-care and healing from my past trauma. I'm maintaining employment, serving in new advocacy roles for the cancer and rare disease communities and celebrated the 10th anniversary of LAP. 

In 2021, I attended my first Reiki session and was confronted by my lack of experiencing joy with a challenge to start finding joy. Through all of the hard work I'm doing for my self-care, self-healing, and self-growth - I can finally say that I do experience moments of joy now in life. And they are absolutely wonderful, and I want more of them. I want them so much so that I often am faced with moments of fear and anxiety to hold onto those moments as they're overshadowed at times by my fear of never having them again. This is becoming a lessening concern though as I am incredibly doing well maintaining self-care after a year of trial and error with how to maintain self-care practices. 

I'm also relieved and grateful to finally know the reason for my unexplained chronic vomiting after nearly a year of this issue only worsening and learning what my treatment options will be for it. It is something I've really been struggling with since July of 2022 that was only worsening and taking a heavier and heavier mental toll. With my esophageal dysmotility, I am faced with very limited options for treatment - a muscle relaxer or surgery - both of which my doctor doesn't like. Fortunately, I previously took Baclofen in 2014 following developing a bulging disc in my neck and didn't experience any side effects from the medication. My doctor agreed to allow me to trial it for my vomiting and so far, as long as I time my doses right and don't overeat, I'm able to keep food and drink down! I've decided to not pursue surgery for two reasons - not only because medication is working but also, my doctor confirmed I have another stricture around my small intestine. And as he reminded me, no one really wants to do surgery on me due to my long history of surgeries and excessive adhesions. I fully anticipate in the future it is likely that I will require surgery for the Whipple Procedure and/or to remove the adhesions creating my stricture. I'd much rather at this point, trade a surgery for esophageal dysmotility for one or both of these possibly needed surgeries in the future. There comes a point when a person becomes inoperable, and I don't want to hasten that time for myself any more than what's absolutely necessary. 

The mental toll I've been under this year has also been compounded by developing Post Concussion Syndrome following a fall in February 2023. This is a subject I will explore in a future post but do not presently feel comfortable publicly sharing the full details of what life has been like with PCS at this time except that PCS has been an extremely challenging and nightmarish experience that no one has been able to truly understand how it's affected me except for my partner, Mike. And that has also been a challenge as it has led me to feel isolated, misunderstood, and dismissed by the majority of people in my life because they don't see or grasp what it's like to have a brain injury that isn't healing at an expected or wanted rate. My brain is still healing with slow improvements, which is something I am also extremely grateful and relieved about and hope that when my brain fully heals that I won't have lifelong complications from the injury. 

It's a difficult process to accept when life changes with no guarantee or even signs of improvement to return to how life was previously. In spite of a multitude of changes occurring in the last 2 years with barely any time to adjust to one change before another arises, I can confidently say that presently I am living my best life and even though there are no cures for my conditions, I'm full of gratitude for where I'm at in my life and I eagerly anticipate a world of wonderful things to continue as time goes on. 

Learning Balance

I spent 2022 learning self-care after realizing I never actually given myself self-care before. I think this maybe actually could even be considered as fawning, a trauma response. I have dedicated my life to the service of others, focusing on their mental well-being and empowering them to navigate and succeed in their own chronic illnesses. I was so focused on how to help others, professionally and personally, for the last 13 years that I never stopped to think about what I need. Prior to entering the work force, my life focused on my sheer survival since the age of 9. There wasn't time to think about self-care, my body was just trying to live to the next day and my mind was just trying not to break in the process. 

Now that I've learned self-care, I find myself experiencing great moments. But they're so great that I forget to maintain self-care resulting in a backslide. And not just a mental or emotional backslide, but also a physical one. My physical health and mental health are so closely intertwined that if I don't feel decently, tolerably well physically, my mental health plummets. It may only last a day, or it may last weeks to months. It took most of 2022 for me to finally identify the cycle and its root cause. I feel decent physically and am content emotionally, I overindulge in activity and stop focusing on self-care, I start to have increased physical symptoms, I start to get depressed and then they feed off one another. It isn't until I decrease my activity and heavily focus on my self-care again that I'm able to start to stabilize once again. And then the cycle continues.

I identified the cycle and its source early in December 2022 and then stayed in a frozen state for a few weeks, terrified to resume activity because I don't yet know how to balance my self-care and my activity without spiraling again. And so, I was left being frozen with fear and feeling overwhelmed. When trying to stop a spiral, I don't do anything beyond working as regular and I only engage in a small activity once during the weekend. There's so much that I want to do, so much that I enjoy but something must give, must change. I knew I needed to evaluate and prioritize my activities to identify a working plan to maintain self-care and prevent continued cycling. The difficulty lied in finally sitting down to do just that. 

With the continued encouragement from my counselors for a couple weeks, I finally allowed time for reflection and evaluation. I decided to maintain self-care I will:

• Stop trying to do so much because it is wearing myself thin. 
• Weekend activities will be limited to either a) one full day of activity or b) at most, 1/2 day of activity either on one weekend day or both weekend days. The rest of the weekend time I will dedicate to either resting or my rare disease advocacy depending on what I feel able to do at the time.
• I will no longer push myself to rare disease advocacy on weeknights and will only engage in advocacy efforts during these times if I feel up to it. 
• I will take at least one day off work every month for myself, even if it is only spent resting at home.
• I will continue EMDR therapy on a weekly basis and adjust my CBT counseling sessions as needed.
• I will increase my antidepressant medication when needed (This was approved by my PCP)

This plan, I believe, will help take some of the pressure that I place on myself to engage in activities/advocacy efforts on a near constant basis and instead, allow me to benefit from recovery periods for longevity. And as much as I want to do things when I'm feeling well enough to instead of setting limits on myself, I'm going to have to respect these new boundaries for my well-being. I'm going to have to accept that I won't be able to complete as many things as I normally have the past. I'm going to have to learn to stop pushing myself past my limits and to stop judging myself for not accomplishing as much as I would like in a given period. This part of self-care though - setting and respecting boundaries, being kinder and more allowing with oneself. 

As you may have noticed, I haven't been creating a lot of new content - whether articles or Youtube videos. These are both things that I will continue to do and want to do. However, the schedule will likely be sparser than what it typically has been in the past. 

I will continue to post nearly daily on LAP Facebook, regularly on Instagram and Tiktok as well. 

I'm also remaining active in the FAP Facebook Groups and One Cancer Place and completing guest articles and podcast interviews when able. I would like to start regular Twitch streams but have not yet done so. 

So, while I may appear less visible in some ways, I have no intention to stop LAP or any of my other rare disease advocacy efforts. I'm just learning how to balance it all. I will remain here and available. Our FAP and Short Bowel Syndrome communities mean the world to me. And I have big things planned for this year as ways of fundraising for the NORD FAP Research Fund so that we may finally fully fund it!

If you're struggling with balance as well, I encourage you to take a well-deserved moment to give yourself the time you deserve for self-care so that you may achieve a greater balance. 

Self Care Rituals Beyond Meditation

I attended a reconnection retreat this Spring focused on reconnecting to myself, others, and the universe. Here I learned and practiced new self care rituals beyond the typical meditation for mental health. As I've shared before, the last year has been physically and emotionally difficult leading me to relearning self care. I hope you'll enjoy the following as much as I did at my retreat.

Meditations have been found to have profound benefits upon the brain, mind, and body with just 11 minutes a day of meditation for 8 weeks changing the amygdala and hippocampus of the brain thereby reducing fear and increasing emotion regulation. 

The retreat day started by sharing a welcoming invitation into the space and welcoming yourself and your neighbor to be present with the idea that we are all on a pilgrimage. One's pilgrimage may differ from another's - perhaps it's a journey of self acceptance or letting go. No matter the personalization, we were on a pilgrimage in life and this brought us to letting go rituals.

Letting Go Rituals

We wrote about something we would want to let go of and then we could burn or bury it. Or perhaps, we would hold onto a small rock for the day's journey and at the end release the rock and what we had instilled it with and let go at the end of the day.

I chose to write a letter to my younger self and keep a rock that I was instilling the contents of the letter only I would keep both so that I may remind myself of what I needed to let go when I tend to forget. Also, the rocks symbolized a vault for me so I can lock away what I need to let go of inside this rock and look upon it as a reminder.

Dear Young Self,
You have endured so much trauma for such a young, tender age. Things no one should experience, especially as a child. These lessons seared into your being - flesh and soul, burned and scarred forever more. The pain so deep on the mind festering.
How were you to cope, there was no way. So you blamed others for your pain and waged war against them. Although you have forgiven most, there is still more to do. You are not free through you've tried so hard and worked so hard. The work is not done nor may never be. You are a work in progress and that is ok, that is life.
Give yourself the permission to be - to be how you are and how you want to be. You've come so far, too far to quit now. You will go so far when you let yourself be.
Life isn't all joy but it isn't all sorrow either. You can and should experience both. You need both to grow. It creates the right environment as there is no progress without lessons. Let yourself feel the pain, remember Let It Burn and the soul torture you felt and the strength it gave you. You have that in you still. Draw from it, use it. You don't always have to feel it, but remain aware and open to life.

Let yourself live and enjoy what life gives you. Do not over burden yourself. Let yourself be.

Labyrinths

Labyrinths were introduced as a physical meditation - to purposely walk slowly to allow the mind the think. The retreat grounds had two labyrinths to walk and a hand labyrinth was allowed as an alternative. There are a variety of hand labyrinths available for download here. 

I did not participate in the labyrinth exercise but it sounded like an intriguing practice I would like to participate in the future for the mental and emotional benefits of purposeful walking with contemplation. 

Gratitude Circle

Next was a gratitude circle with journaling prompts. There are a variety of mental health benefits for a regular gratitude practices.

First we envisioned ourselves during a visualization as our future selves. What does your future self look like, where are they and what do they share with you? How are you different?

Within the gratitude gathering circle, what are you hearing lately and how have you been responding? What do you need to hear? What gifts do you have that you can ponder upon?

Utilizing a form of GRACE as a Daily Examen,

• Gratitude - ponder what you're grateful for
• Request Oneness - seek wholeness and harmony with the universe 
• Attitudes and Actions - think of your attitude and actions, do they align with a grateful heart
• Cocreate - convert or change one thing to another - negative to positive
• Enthusiasm - enthuse about your gifts, gratefulness, and life

My future self told me that I have, I need strength, courage, and appreciation. Strength and courage to make changes and go through changes of life. Appreciate people in my life, keep them in my heart now and relish, savor time with them. Do what makes me happy, find happiness in what I do. Let myself make changes if I need to in order to be happy not just safe but also happy. There is happiness in where I am and what I do but I can change to find more if I want to. 

It came to me during the circle that I place a lot of pressure upon myself to do everything even when I'm told by others that I don't need to do everything. I need to give myself permission for openness to life and to balance.

Lectio Divina Meditation

We then completed a Lectio Divina exercise with the poem Finisterre. This was completed in a group by slowly reading the written work three times. The first time to identify a word that illuminated itself to yourself, the second a phrase, and a third time to journal our reflection. This practice could be done with any written work.

Finisterre

The road in the end taking the path the sun had taken, into the western sea, and the moon rising behind you as you stood where ground turned to ocean: no way to your future now but the way your shadow could take, walking before you across water, going where shadows go, no way to make sense of a world that wouldn't let you pass except to call an end to the way you had come, to take out each frayed letter you had brought and light their illumined corners; and to read them as they drifted on the late western light: to empty your bags; to sort this and to leave that; to promise what you needed to promise all along, and to abandon the shoes that had brought you here right at the water's edge, not because you had given up but because now you would find a different way to tread, and because, through it all, part of you would still walk on, no matter how, over the waves.

- David Whyte

For me, the word that highlighted itself upon the first reading was promise and the phrase upon the second turn was at the water's edge. And so I reflected upon this and journaled:

I am at a precipice, a turning point where I can change my course to whatever I want. I owe that to myself, to care for myself and do what would be good for me. I need to honor myself by taking care of myself.  

Metta Meditation and Sound Healing 

We completed the retreat with a guided Metta Meditation and Sound Healing. We were guided through the following loving kindness meditation to help replenish ourselves so that way me then replenish others. During this, we thought of those important in our lives who drew support and love from and who we wished to send support and love to as well.

Metta Meditation - Loving Kindness Meditation

May I be happy

May I be healthy

May I be free of suffering

May I live in peace

May my life be blessed with ease

May you be happy

May you be healthy

May you be free of suffering

May you live in peace

May your life be blessed with ease

For the sound healing ceremony, or sound bath, our guide then played a variety of music from a gong to Tibetan bowls to create soundwaves that reverberated through our bodies and minds. At times the sounds were overwhelming and felt as though they entered and left the body entirely. 

The Evolution of Myself with Chronic Illness

When I look back on my life, I am drastically different now than how I was as a child and even how I was when I started Life's a Polyp in 2012. My views about myself - physical and emotional have greatly evolved over time to culminate in a wonderful sense of self-acceptance. This was not achieved by myself though. It was a painstaking process lasting a couple of decades with immense support of others - including yourself. 

As a child, I was painfully shy. I didn't talk to strangers and barely to those I did know but wasn't particularly close with. I didn't start to become social until I forced myself in 7th grade after experiencing bullying the year prior. My shyness was exacerbated by the surgeries I underwent when I was in 5th grade and by having an ostomy. I had no self-esteem and judged myself harshly for the appearance of my surgery ridden body. Truth be told, I hated myself, my body, and those I blamed for my health condition. Changing my social habits wasn't easy but I found it necessary for my emotional survival and so I pushed myself to expand past my comfort zone. 

From 7th grade onward, I acclimated to the new, more social self I created and haven't been without friends since. In high school, I was able to have my ostomy reversed. This improved my self-esteem and I was no longer ashamed of the physical appearance of my body. I still wasn't ready to share about my day to day symptoms, particularly my GI issues caused by my rare diseases - Familial Adenomatous Polyposis (FAP) and Short Bowel Syndrome. 

High School with My Central Line

My health became unstable after my ostomy reversal resulting in frequently missed days from school
due to illness and hospitalization. I became known around my school for being sick. I had a central line for TPN for about 6 months. My central line was prominently visible as my school allowed an altered dress code for me due to regular clothing causing pain and irritation of the skin around my central line. I even unabashedly showed off my scars. However, in spite of my social acceptance, it would still take several more years before I would have the confidence to share my medical story with others.

In 2012, I found a community page on Facebook for FAP and I interacted with others through this page. The administrator reached out to me and asked me to start a blog about living with FAP. I agreed and Life's a Polyp was born. However, I still was not ready to openly share my medical story so I created Life's a Polyp anonymously. I didn't share my identity at all until a reader from Michael's Mission contacted me about how to grow the impact of Life's a Polyp. With her prompting and encouragement, I finally revealed my identity to the world. She gave me the push I needed to no longer hide in shame of my medical experiences. Over time, I became more and more willing to become an open medical book. I became more open with friends and romantic partners not only regarding my medical past but also my current health issues and symptoms.

This push is what has helped Life's a Polyp expand from a blog to a Youtube channel, a Shop, and enter the world of social media. It has allowed me to have my medical story accepted for publishing in a book and the creation of my own children's book about FAP. 

I never would have guessed as that excruciatingly shy young girl that my life would become so public medically. That I would willingly tell others the intimate details of life with FAP and Short Bowel Syndrome. I never would have expected others to be interested in what I had to say or what I experience with these diseases. The readers of Life's a Polyp continue to provide me encouragement to continue my advocacy efforts. I'm not sure when I would have found such a deeper level of self-acceptance about my health conditions and my body if it wasn't for readers such as yourself. With the expansion of social media, I have found an online home amongst others with FAP in groups across various platforms. I never dreamt such acceptance by myself nor by others to be such a possibility. 

Our words have a profound impact on others and it can mean the difference between suffering alone and enduring together. If you're struggling with self-acceptance, don't give up hope. It doesn't typically occur over night but each day can mean progress. You are worthy of self-acceptance and love. May we all strive to help one another find self-acceptance.

How Reiki Affected My Mental Health

My boyfriend, Mike, sent me to his massage therapist for a massage last year due to my stress causing shoulder and back pain. His massage therapist also does energy work, including Reiki. Out of curiosity, Mike also purchased me a Reiki session. I didn't have any knowledge or expectations about Reiki other than it was energy work with Chakras. I don't hold any beliefs toward energy work or Reiki but decided to go to the session with an open mind and figured at the very least, it would be relaxing.

Reiki is often referred to as energy healing, targeting the energy fields around the body. It was started in Japan in the late 1800's. Reiki involves transferring universal energy from the practitioner's hands to the client in order to improve the flow of energy around the body and remove energy blocks thereby allowing relaxation, speed healing, and reducing pain and other illness symptoms. 

I scheduled my Reiki session for Saturday, April 3rd in the mid-morning. Little did I know, this would be the perfect day for a Reiki session. I awoke that day early and started practicing for a speaking engagement I had next the day about my experiences with doctors dismissing my reports of pain as a child. For the last two months, I have also been writing my medical story to be published in a book and writing my own children's book about Familial Adenomatous Polyposis. I have been working on these projects related to my health and Life's a Polyp quite vigorously without allowing myself mental breaks. This particular morning, all of the reliving of my medical trauma became too much for me emotionally. I was crying and distraught this particular morning before my Reiki session. 

When I arrived for my Reiki session, I was instructed to lie on a table face up. The room was dimmed and relaxation music was playing. She wafted some scented oils into the air and over my body. She occasionally laid her hands on me, primarily my feet and shins. Throughout the session, she held her hands hovering over my body and moved them back and forth in various motions. At one time, she was moving her hands lightly over my arm and it felt as though something was being spread over my arm or stretching the skin of my arm. 

She checked the flow of my energy in each of the 7 Chakras with the use of a pendulum. She said my 6th Chakra, the Third Eye, was very strong and indicated that I am very intuitive. I noticed that the pendulum moved over this area more than it did any other area. I was unable to see her hand causing movement in the pendulum. She advised I had a block in my 3rd Chakra, the Solar Plexus. The pendulum did appear to move less over this Chakra than it did over the other six. This Chakra is in the upper abdomen and holds our self esteem and confidence. It is believed that blocks in this Chakra are often experienced through digestive issues, which embodies my diseases of Familial Adenomatous Polyposis and Short Bowel Syndrome. 

She told me that she felt I was hanging on to past regrets and not fully loving myself or allowing myself to fully feel emotions. She told me that I'm a very serious person, a teacher to others, and I don't allow myself to fully feel joy. She explained that my life's purpose is to teach and help others and particularly help others learn compassion and understanding. I agreed with this description of myself she provided.

She asked me why I limit my experiences of joy and I shared my extreme fears of losing my parents and my desire for them to outlive me. To remove this block, she instructed me to imagine a large sunflower over my abdomen and to push all the built up sludge from this area into her hands that she moved lightly over my abdomen and sides. She did this for a long period of time. I began to physically feel light and when I expressed this, she stopped. Then she told me to imagine my body suctioning a yellow, shimmering light from her hands to fill my body. After awhile, my stomach began to feel full and when I expressed this, she stopped. 

She spoke about the energy field that surrounds the body. She explained that those with amputations having not only physical phantom pain of their missing limbs but may also experience an energy phantom pain. I told her about my phantom sensations of the stoma I had on my right side for 6 years before having my ostomy reversed. She again used the pendulum and began to spin it rapidly above my body. I was instructed to imagine this vortex acting as a suction over my previous stoma site. After she did this for awhile, I noticed that I began to feel extremely relaxed. At this point, she stopped.  

The Reiki session lasted 2 hours and I found it to be extremely emotional. I cried often during the session while she told me what she sensed about me and asked me questions about my fears of outliving my parents. She told me that the work we had done during the session would help with my mental health. She also encouraged me to set aside a specific time frame a day to think about the negative, fearful thoughts I frequently have rather than thinking about them throughout the day. She suggested allowing this set time to be when I'm working on Life's a Polyp projects so that I may channel these thoughts and energy into something productive. I had no idea what to expect from this Reiki session but it was perfect timing to help me cope with my medical PTSD triggers.

I decided I would set boundaries for my negative and fearful thoughts, as she suggested, and resume daily meditation exercises. The rest of the day I remained melancholy but by the next morning, I awoke refreshed with a much happier disposition. 

Is there something to Reiki and energy work? I don't know, but I do know that I enjoyed my 1st Reiki session and I am in a much better place mentally since experiencing Reiki. Would I do it again? Sure, why not?

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!

Pets and Chronic Illness

Everyday I'm grateful for my pups. I can't imagine not having them in my life in spite of challenges my health can present in the care they require. There are days that I want to stay in bed or am having a short bowel flare and don't want to move except for when I'm required to run to the restroom for the umpteenth time. They have provided me unconditional love and emotional support without fail. They force me to move when I'm not motivated. I truly feel as though I'd be lost without my pups.

Ruhle and Zia

My first real pup that I was solely responsible for was Ruhle, an Aussie mix. I found him at a camp
ground along a river. He ate hot dogs from us for dinner and the next day followed us along the river bank as we canoed down the river. We asked around and he was just a lone campground dog so we took him home. For the entire trip home, he curled up next to my feet in the truck floor bed and was calm as long as he was touching me. My goal was to train him to be a therapy dog and take him to work with me at the nursing home I worked for. He completed three levels of obedience training and obtained his Good Canine Citizen certificate. He loved learning new tricks and loved to perform them. He absolutely loved children and was an incredibly loving pup. When he was 4, we started fostering dogs for the local Humane Society and that's when I fell in love with a little female Carolina Dog and so we adopted her and named her Zia. Ruhle and Zia became extremely close. As he aged, he became like a grumpy old man and no longer enjoyed going to dog centered events. He loved our pup Zia but didn't enjoy other dogs so much anymore. He developed Kidney Disease and he unexpectedly passed when he was 10. Losing him broke my heart and Zia's heart. She wasn't herself without Ruhle so I decided she needed another buddy. I was looking for an older female pup this time, small to mid size, who would get along with Zia well. The female I wanted to adopt was too large and dominant for Zia. Zia is small but all muscle and stands her ground. I wouldn't be able to bear the thought of her fighting and being at risk of being hurt by another animal. And I discovered she does better with male dogs. We went to another shelter and I spotted a medium to large 2 year old male Catahoula mix who

Azriel ad Zia

had spots like Ruhle. And I just knew - I needed to get to know this dog. He wasn't what I was looking for at all as a companion for myself and Zia. The shelter let him and Zia out in a fenced yard and they got along well - he was even submissive to Zia. He has a large scar on his hip and a torn up ear. He spent a year in the shelter and is terrified of men. He definitely has a traumatic history but he took to me right away. We took him home as a trial and within a couple of days I knew he was for us. I named him Azriel. He is attached to my hip, is still learning some commands and although he remains scared of men, he has shown the ability to love on male friends of mine if they're patient with him. Zia even acts like she likes him on occasion and will at times run around with him. She no longer acts withdrawn and sullen.


There are plenty of studies showing the physical and mental health benefits of animals. According to Maslow, one of our hierarchy of needs is belongingness and love. Animals help meet this need, particularly for those who live alone. According to the Centers for Diseases Control and Prevention, animals have also been shown to increase fitness and happiness while decreasing stress with lower blood pressure, cholesterol and triglyceride levels, feelings of loneliness and improving socialization and exercise opportunities. Caring for an animal not only provides benefits to physical and mental health but it can also teach responsibility. Studies are showing that the responsibilities of caring for a fish helped teens better manage their diabetes and helped children with ADHD focus their attention. Children who read to animals have also shown an increase in social skills, sharing, cooperation, volunteerism and a reduction in behavioral problems. Children with an Autism Spectrum Disorder have shown decreased anxiety, improved social interactions and engagement with peers from a few minutes of interaction with guinea pigs. Service dogs, Therapy dogs and emotional support animals have for a long time demonstrated how helpful an animal can be physically and emotionally.

A pet is not necessarily for everyone. When considering adopting an animal, one needs to take into consideration the financial and physical requirements a pet will demand. Some pets may be less expensive in their maintenance and care than others. A high energy animal may not be the best idea for everyone. Housing and outdoor access will vary from animal to animal as well. Who will provide care to your pet if you travel or are unable to care for your pet for a period of time?


We can receive companionship from all sorts of animals though so if a dog or cat is not a particularly good fit, perhaps a different animal would be such as fish, rabbit, bird, hamster, etc. If you're interested in adopting an animal but unsure what may be the best animal for you, talk to someone at a rescue group, shelter, veterinarian clinic, or pet store such as Petsmart or Petco.


Another great option that is an alternative to the lifelong commitment of a pet is to foster for a local shelter or rescue group. Fostering allows a shelter/rescue to free more space for another animal in need, provide a temporary home to an animal and one can still benefit from the companionship of an animal while in their care until they've been adopted. Additionally, volunteering at a shelter/rescue group is another great opportunity to benefit from the care of animals with limited responsibility and is a much needed source of help to such organizations.

Keeping it Simple

A few years ago I underwent an intensive transformative time as I was separating from the love of my life and in the midst of this heart wrenching, soul destroying period I was also losing others in my life I hadn't expected.


It was at this time that I wrote the following revelations in Let the Fire Burn :

"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."

That year I learned a multitude of lessons, none of which were easy. Not only was I having to cut ties with others of my choosing but I also had others choose to cut their ties with me. I felt abandoned and betrayed by those I held close for so many years, individuals who I had bared my soul to. It had all been in vain. It didn't matter how much I had cherished individuals in my life, nothing could stop what was being set in motion.


And so while in my own depths of depression, I had to learn to let go. Letting go didn't come easy to me but at some point that changed. Instead of holding onto feelings of abandonment and betrayal, I focused on the freedom from drama. My life was chaotic enough as it was, I certainly didn't need added drama. I stepped away and allowed others to do the same and when I accepted that I was able to let go of the stress caused by others.

Nowadays I keep my circle tight. Outside of work, there are few who I deeply engage myself with. It's not anything against others, it's a matter of simplification. With fewer people, there is less stress and mess. Those I remain close to also accept that I may not talk or visit them for long stretches of time. We both know though that the other is just a call away if one of us is needed for anything. We don't take things personally with each other and we don't create drama for the other. These are deep, meaningful yet simple friendships that sustain us. These are the type of friendships I not only want but also need.

It's okay to take a step away from someone or something. Sometimes it is necessary for our mental health. Learning to step away has taught me not to take the actions of others personally even if it was meant to be personal. It no longer matters. What does matter is self care and happiness. These are things that are within our own hands and others cannot take it away from us without our permission. I stopped giving my power over to others and I've never looked back.

Birthday Struggles

My birthday is a bit of an emotional roller coaster at times for me and has become increasingly difficult for me to enjoy as the years pass by. I shared earlier this year about how my birthday and New Year's start a period of mourning as my fears about the future are intensified. Over time, birthdays have changed from a triumph of survival to a period of mourning.


Often individuals enjoy taking off from work on their birthdays as a way to celebrate. I prefer to work on my birthday so that I can be surrounded by coworkers and celebrate with them versus being home alone on my birthday. This got me thinking and I realized that even as a child, I felt that my birthday wasn't anything special - it was insignificant - which led me to feel that I too was insignificant. I didn't deserve anything significant to occur on my birthday and it was significant when someone remembered to wish me a happy birthday. As the mourning of my birthday years worsens with time, I particularly do not want to be home alone allowing myself to wallow in my mourning.


Since I entered a brief period of depression surrounding my birthday last year, I expected the same to occur this year. I was pleasantly surprised with myself when this didn't occur - at least to the depth of last year's birthday. I struggled in the morning with feelings of sadness and even welled up with tears at times but I was able to fight off the tears and turn the day around by the afternoon. I pushed away my fears about the uncertainty of the future and instead I enjoyed my the birthday lunch my coworkers provided me and appreciated all the birthday wishes from loved ones and even strangers online. I thought I would be in an emotionally fragile state once I got home and asked a friend to spend some time with me. But once again, I surprised myself and was comfortable in my alone time.


Although the sadness I tend to experience around my birthday lessened significantly, I also didn't experience a surge of triumphant feelings about survival either. And that's okay. I was content with a lessening in sadness allowing me to more greatly enjoy sharing my birthday with my loved ones.


Whatever holidays serve has painful reminders to you, may the next be easier. Sometimes our fears and mourning never fully dissipate but they can lessen and we can still enjoy the good times, particularly with others. It can help to utilize coping tools to reframe our negative thoughts to allow us a reprieve.


Here's to an even better birthday next year.

Managing Anxiety and Depression

It's difficult to not experience anxiety or depression at some point in life, particularly when dealing with a rare disease or other chronic illness. Such feelings at times are normal to experience but when they become long term feelings is when they can become more inhibitive or detrimental.

It's helpful to understand the cyclical relationship between thoughts, mood, and behavior and how they interact with one another. It doesn't matter where you start in the cycle, each segment will affect the rest.

For example, if I have the negative thought that my health will not improve leading to depressive feelings which may manifest in behaviors such as isolation and loss of interest in activities. These behaviors feed into new thoughts such as I'm never able to do anything which may make me feel more depressed and engage in increasing depressive behaviors.

Each part acts as fuel, reinforcing the cycle to continue. And so this is the same for other moods such as anxiousness or happiness.

The easiest way to change the cycle is to stop a negative thought in its tracks and replace it with a more positive thought. However, negative thoughts occur so automatically that we often fail to realize that we had a negative thought. It helps to know what kind of negative thoughts to look out for in order to start recognizing the occurrence of a negative thought.

• All or nothing thinking. Looking at situations as black and white with no middle ground. Either I can do everything or I can't do anything.
• Overgeneralization. Applying one experience to all future expectations. I can't do anything now or ever.
• Filtering out or diminishing the positive. Only recognizing the negative, ignoring the positive or excusing why the positive didn't count. I was able to do something this time but that's not how it usually is.
• Jumping to conclusions. Drawing negative conclusions or expectations without any evidence to be the case. I won't be able to do anything anyway, so why try.
• Emotional reasoning. Belief that what you emotionally feel is the reality of a situation. I feel like I can't do anything so therefore I can't nor will be.
• Expecting perfection. Holding yourself to a strict level of standards with no room for error or difficulty living up to unrealistic expectations. I can't do it the way I want so I can't do it.
• Personalizing everything. Taking others words or actions personally even if they were not directed at you. They didn't invite me to their activity because they don't care about me.

Familiarizing ourselves with the types of negative thoughts can help us to recognize when we have a negative or discouraging thought. If you have a bothersome feelings, ask yourself the following questions:

• What happened that is bothering me?
• What were my first thoughts about it?
• How did I feel when it happened?
• What did I do?
• What happened as a result?
• Am I satisfied with that outcome?

These questions will help us to understand our thoughts and feelings associated with an experience or situation. Once we understand what is going on behind the scenes in our mind, we can tackle the problem and work toward a more positive experience. This is particularly helpful by changing or reframing the identified negative thought when such an occurrence occurs.

Instead of thinking "I can't do anything because I'm sick", we can reframe this discouraging thought to "I'm not able to do as much as I would like to right now, but tomorrow I may be able to do more than I am today".

Negative thoughts are not easy to change over night. We engage in negative, discouraging thoughts so abundantly as human beings that it has become an automatic habit. But like with any habit, habits can be changed. It just takes continued effort and determination to create a new habit. So don't give up, it may take some time but it will be helpful for mental well-being to continue such efforts.

Changing behaviors can also help to enhance positive thoughts and emotions. Often when we are anxious or depressed we will isolate, decrease activity levels, over sleep or not sleep, and increase or decrease food intake. There are a number of behaviors that we can engage in to help calm the mind and those bothersome feelings.

• Here's a step by step guide to such helpful behavior exercises.
• Try out these additional tips to help manage stress and anxiety related to illness.

Coping with Life Altering Breakups

The 27th will be the third anniversary of my divorce. I view this day as my independence day - the day I regained my freedom as an independent woman free from the confines of being legally tied to another person and the damage that legality can cause to a person when all is betrayed or jeopardized.

Although I still celebrate this freedom day, this year it comes with some heartache. Perhaps this is due to the ending of my last relationship almost six months ago. It was the first relationship since my divorce where I allowed myself to deeply love again and for a while I thought this relationship would be a forever relationship. Like my dreams and hopes pinned on my marriage were dashed, so it would be with this relationship as well.

Just like with the ending of any deep relationship, there are bouts of sadness and pain that creep in afterwards when you think you've fully healed. And so it is as my anniversary approaches. I am reminded of the life I once had and the life I have now. I had a good life then and I still do now - they're just different and honestly, in the long run it is a far better life now.

In my marriage, we were building a life together. We were planning to build our dream home on a farm I bought in the country and for years planned on surrogacy for a child of our own. He was trying to make his own side business work of his own passions and interests. We lived as partners and we had a great relationship and marriage - until we didn't anymore. I remember the day that my life began to fall apart, only I didn't truly realize it yet. My love for my husband and my optimism in us kept me in denial of the true level of pain that had been inflicted upon me and our relationship. In the end, the pain was too much and I couldn't get past it. Eventually, I realized that the level of security I require for my own well-being could only be obtained and protected on my own - outside of any marriage or legalities that would tie me to another person and their choices.

My life changed - there was no more plans for a deeply desired baby, I moved back home to my parents and eventually sold the farm. I didn't know what I would do or where I would live permanently. My mind frantically raced between all the possibilities. One moment I was going to permanently stay with my parents and provide for them as they age or I would build my own house on their acreage so that I would be near but separate. Or maybe I would go ahead and build a house on my farm or just move into my new boyfriend's house. The options were endless and I found myself able to advocate for every possibility. But in reality, I was still grieving. My life was different and there were too many options available. I didn't know what I wanted my life to become.

The times following our separation and divorce were truly freeing.
The weight of all the pain and

stress had been lifted from me and I had the whole world ahead of me full of adventures awaiting me. Sometimes I still am gifted the surreal feeling of my present life with all the freedom of opportunities that singledom provides - the never ending possibilities that lie ahead for me with no one else to answer to or interfere with my decisions or life. The world is open to me and I can choose any path I so wish. This surreal feeling has waned over the years but it refreshes itself periodically and I am left amazed at my life. I left a marriage that had unexpectedly turned harmful to my future security and I managed to pick myself up (albeit with the support of my parents and friends) and now I own my own home. I never would have suspected owning your own home could provide such joyous, prideful feelings within oneself. At times it is hard to believe I am where I am in life - that surreal feeling that I made it on my own.

My last relationship lasted a year, longer than it should have for my own mental well-being. We lived together and it was nice to share a life with someone beyond just the weekly date. It wasn't a partnership like I wanted but it was the closest I had come since my marriage and we shared a deep love for a while. After our break up, I had to become accustomed to being on my own again in my home. This allowed me to reacquaint myself with my home and that surreal feeling of it all being mine and mine alone. That surreal freedom I had lost while in this relationship.

I've rediscovered my freedom and the wonderfulness of my present life since then. Sure, I hope to find a partner to spend my life with someday. It would be nice but so is the freedom of independence. And so for now, I will savor this freedom and cherish the surreal feeling of my accomplishments and the adventures that await me.

Milestone Depression

I never was one to attach a lot of meaning to holidays or birthdays, they were just another day, another year. Sure I enjoyed celebrating with loved ones but they remained just another day. I even recognized birthdays as a milestone of survival. However, my outlook on holidays drastically changed over the last couple of years for two particular days - my birthday and New Year's. Now I enter a period of mourning around these days in anticipatory grief over what the future holds.

I have always wanted my parents to outlive me and there were times that this was nearly the case. I fear the real possibility of outliving my parents. And as I age, this fear has intensified. My birthday and New Year's have become to serve as painful reminders of this fear as I become another year closer to my fears becoming reality. I no longer enjoy these days, instead I become overwhelmed with fear and depressive feelings - spending hours sobbing while my mind is consumed.

As a child and teenager, there were times that my doctors were amazed at my survival of times that I wasn't expected to live through. Afterwards, I was convinced that I would not live past age 21. When I turned 22, I was overcome with feelings of bewilderment and grief at passing 21. I had come to accept my death and was prepared for it. I didn't know what to think about continuing onward with life when I was utterly convinced I wouldn't see 22. My health was still precarious enough that it wasn't unreasonable to think my life was limited. Age 21 has come and gone and now, I find age 40 to be a prime limit to my life. At 40, my parents should still be living and they would be recipients of my life insurance policies that would allow them to be taken care of financially and medically in their older years. My parents' comfort and security is more important and means more to me than a long life for myself nor do I want to endure the loss of my parents. As selfish as that may be, their loss is a tremendous fear of mine and I truly believe they would handle losing me better than I would handle losing them.

And so for the day of and a few days past my birthday or New Year's I am overcome with mourning for another year added to my age and my parents' ages. This state doesn't stay for long but it is long enough to remove any joy these holidays may have held for me in the past. I try to remind myself during these days to enjoy the time that we do have together and no one knows the future. After a couple of days the intense feelings extinguish themselves until the next year when they are renewed with acuity once again. The fear remains with me on a daily basis in the back of my mind, however, not as acute as on these particular holidays. Most days it is easily manageable as I practice reframing my bothersome thoughts and distract myself with activities. It's important to focus on the present so that we don't get lost in the fears of the future.

What I Learned From Divorce

When I divorced, I never could have been prepared for what to expect. No one tells you what you should expect, there is no handbook. Your world is turned upside down and you feel like your life is out of control. You simply live in trial and error and commiserate with other divorcees who can relate to your experiences. There is so much you learn during this period that can last for years even. The navigating, the learning may never cease. I'm only two years post divorce and although my married days feel like a lifetime ago, they remain with me although diminished in intensity.

From the initial moment I made the final and clear decision to end my marriage I began to experience an exhilarating time; I was filled with emotions of relief that were freeing to my mind and soul. I no longer had to hold on to the stress and worry that had accompanied me for the months previously while I battled depression and the stress of trying to hold on to everything while maintaining my sanity. With all this freedom, my energy levels soared as I was no longer burdened by immense stress. I started exercising, I could hardly sleep due to my abundance of energy and my excitement for the possibilities of the future. I felt limitless and carefree, unburdened by my final decision.

I began to re-enter the dating world shortly after, as is a common occurrence. Looking back, I realize now that a divorced individual is a mess for at least a year following the divorce and for that person's own sanity and sake, really shouldn't enter into relationships during this time. Refraining from re-entering the dating world for a year would be a very difficult commitment for most individuals. As humans, we long for companionship and intimacy with others. We tend to enjoy the thrill of finding potential new partners and participating in the dating realm. We feel desired by others giving us attention after an ordeal such as a divorce. The options for potential partners is an exciting new world that is reopened to us. It's a thrill that is hard to deny. The first year particularly is for a time of healing and rediscovering one's self. I had an intense amount of energy and drive for my limitless future but my mind was so scattered and pulled apart by all the options that now laid available to me. My mind raced between options and even though I set goals and plans for myself, I didn't stay with a plan for long before racing to another idea and option. It must have been exhausting for anyone listening to my rambling ideas and trying to keep up with my racing mind. Just as I wasn't ready to commit to another relationship, I wasn't ready to commit to even a singular life plan.

I was not ready for an emotionally invested relationship. I began to become terrified of relationships and kept a cold, emotional distance between myself and others. I've never had a great record of dating and I figured this time around wouldn't be any different; only this time I wouldn't marry again. I would forever be entering and exiting dating relationships. I vowed to myself that I would never allow myself to become lost to another, I would maintain my physical, financial, and emotional independence from another. Relationships became an "easy come, easy go" mentality for me as I kept distance between myself and a partner. I began to view relationships as impermanent. I survived what I thought I wouldn't - losing the person I considered my soulmate and life partner. If I could survive that and be happy again, then the same is true for any future relationship; I will survive any relationship ending. I wouldn't allow myself to become overly emotionally invested and as a result, a failed relationship was merely an inconvenience that could soon be replaced by another potential suitor. I spent a year dating men younger than myself and I learned to appreciate men who were closer to my own age. Not only was I not emotionally available but I also didn't want to deal with immaturity or drama. I had experienced enough drama with my own divorce, I didn't need or want additional drama brought into my life by another individual. I wanted simplicity and partners who themselves were an emotionally strong individual. I was tired of being the emotionally strong person all the time. I wanted someone who could stand their own. Although I have allowed myself to find a deep love again with the intent for building a lifetime together, I maintain a conscious eye on my independence. I've learned that with the right person, I don't have to keep a cold, emotional distance between ourselves as a means to protect myself. I can let another into my heart and remain independent and maintain a healthy self. Becoming cold and distant does not make a healthy relationship and now that I've re-opened myself to a deep and loving relationship, I am much happier than I was in previous relationships. In spite of finding a deep love, for good or bad, without any effort I maintain the view of relationships being impermanent.

While navigating the divorced world, I realized that all my new moments are tainted by past memories and experiences during my marriage. This has lessened with time, but there are stinging moments that cross my heart as I remember a time with my now former spouse or when I am embarking upon a new adventure that would have been with my former spouse if divorce had not occurred. It was quite painful as such events would trigger a flood of memories and grief over what was and what was supposed to be. I had a difficult time coping with vacationing and buying a home on my own rather than with my former spouse. I felt as though everywhere I turned, there was a tainted moment that should have been experienced with my former spouse but now was my sole experience. The sting has diminished in intensity and length, but it remains even though fleeting as it is.

My life changed drastically upon my decision to divorce. I gave up a lot but gained a lot in the end. Divorce was not an easy decision; working my way to that final decision was soul wrenching and I spiraled in a well of anger and depression. It was not an easy transition to make, the transformation of myself couldn't be rushed. But as my heart and mind began to heal though from the aftermath, I've come to love my life and everyday I am grateful for this new, even surreal life.

The upheaval of divorce varies from person to person and situation to situation. This may be
exacerbated any time divorce is contested or involves minor children or property. The entanglement of finances alone can cause extreme stress and friction.

Even when you do your best to maintain independent finances and property from your spouse, I learned that there is always entanglement. If your spouse has financial difficulties, it can be linked to you even when you didn't share finances or property. With this ongoing entanglement due to a previous legal connection to an individual, I realized I wished I had changed my phone number after the finalization of divorce. Years later and I still receive random phone calls connected to my former spouse.

Fortunately my divorce was civil; we even said we would always be there for one another if the other needed. Perhaps this was naivety and wishful thinking in the freshness of our separation. We still have one another's phone numbers and whenever I have questions about anything, he's always willing to provide answers. But would I be able to truly count on him if I needed something? I'm not so sure of that now with the passing of time. Perhaps but perhaps not. With all our civility and promises to one another, I was shocked when I suddenly discovered he had removed and blocked me from his social media platforms. I should have expected it. We weren't what anyone would consider friends anymore. But it was still a shocking realization for me. With one less person in my support system, I had to accept that I may need to lean on my existing support system more heavily due to my health but I also needed to be more independent myself. Our mutual friends now became his and mine; I no longer had his family and friends to call on.

Divorcing was a heart wrenching decision but ultimately it was the best decision for me. It would have been nice for things to have turned out differently, but they didn't. For myself, I must let go of any regrets and instead find my peace and enjoyment in everyday life wherever and whenever I can as I navigate the divorced world.


Other divorcees shared with me what they wish they had known to expect or what they had learned from divorce. See what others had to say:

• When dealing with property there is the risk of both individual's credit being ruined.
• Splitting up pets can be emotionally wrenching. - Wendy
• You may end up taking care of the children all by yourself - Joe
• You learn who your true friends are and there may not be as many as you thought there were - Tricia
•  Sometime it's worth asking "is it more important to be happy or to be right?" when considering remaining in a marriage - Amanda
• Men and women react differently. Where one may act devastated the other may act in the complete opposite. For example "I was devestated and upset, he behaved in a very matter of fact way, was switched off from me completely and had metaphorically closed the door on me and our relationship. It was as if I suddenly had no part in his life or in his relationshp with the children". - Lynley, Top Lady Talks
• You lose friends, other women may look at you as a treat to them even though you did nothing wrong in the relationship, and it took bravery to walk away - Bree
• "I lost a lot of things but my mantra was 'I have my freedom'!" - Aileen
• "It's the kids that matter the most, to make sure they are treated right and always told that they're loved." - Amanda

What are some lessons you wish you had known prior to divorce?

Dialectical Behavioral Therapy for Chronic Pain

This is a guest post by Danielle Faith

In Pain at 4 am

I've just woken up. It is 4 o'clock in the morning and I am in extreme pain. I'm doubled over and unable to move. My goosebumps have goosebumps and I'm ready to pass out or vomit from the extreme pain. I know I have to go to the ER and it's causing a ton of stress.

I have asked myself countless times what if there was a way to avoid a panic attack? What if I could handle the stress better? What can help me? Could it help me avoid the Emergency Room? Can I make my situation more comfortable?

Does this sound familiar to you? Have you ever asked yourself these questions or wished you could manage stress better? What if I told you, you can make things better? It is moments like these where Dialectical Behavioral Therapy (DBT) can help lower your stress and anxiety, allowing you to make clear headed decisions about how to handle your health and can even reduce pain. This is because pain and stress can be intertwined. When you're stressed, you are in more pain and more pain equates to more stress. DBT helps break this cycle and gives you a chance at de-escalating the situation.

What is DBT?

Dialectical Behavioral Therapy (DBT) is a behavioral treatment method originally created by Marsha Linehan to treat a wide range of psychological disorders such as depression, borderline personality disorder, and suicidal idealizations. Over time, it has been proven that DBT is also effective in helping patients handle chronic illness as well and has been used to lower anxiety in chronic pain patients. DBT focuses on a set of four behavioral skills:

1. Distress Tolerance Skills
2. Interpersonal Effectiveness
3. Emotion Regulation
4. Mindfulness

Distress Tolerance

Distress Tolerance Skills are used when the situation cannot be changed. Each skill offers difference insight and it is important to use the right skill at the right time for maximum success. These skills are designed to help you cope and survive during crisis and can be applied to both short term or long term emotional and physical pain.

   Personal Example of Distress Tolerance

Radical acceptance is one of a few distress tolerance skills a person can learn. It is all about recognizing what you can and cannot control. For instance, at one point during the course of my illness I had to live with a feeding tube. Having that tube in my body was the strangest thing. I hated it. However, as time went on I began to accept it for what it was in the moment. That didn't mean I liked the situation.

I actually disliked it quite a bit. But having radical acceptance about it allowed me to relax and recognize that this is just how things are right now. It isn't forever. Figuring this skill out made me feel so much better about my illness. Plus, I was right, the tube wasn't forever, because I had it removed last year and have been much better since.

Interpersonal Effectiveness

Interpersonal Effectiveness skills apply to the skills that help us attend to our relationships. It is about balancing priorities and demands. It is about balancing the 'shoulds' and 'wants' to build a sense of mastery. These skills help identify what we need to do in order to get the results we want out of an interaction while maintaining a sense of self-respect.

  Personal Example of Interpersonal Effectiveness

Many times I've ended up in the ER and have had to use a specific format of talking to get the care I needed at the ER. The skill I'd use is known as "DEARMAN":

Describe: the situation, "Doctor, I've been vomiting all night and am in a lot of upper right abdominal pain."

Express: your concerns, "I'm very stressed out. I think I'm having a pancreatitis flare."

Assert: yourself by acknowledging what you need, "usually Benadryl, Zofran, lot of fluids and pain medication help the situation. I may also need an admit depending on my blood work."

Reward: the person and tell them what they get out of the situation, "I really need your help to make me feel better, that's what doctors do best!"

Mindful: of what is happening and/or repeating your needs, "So, when you put the medication orders in don't forget to include the Benadryl; that's important or I'll itch from the pain medication."

Appear: effective and nice, "I understand what you mean doctor. I am, however, in a lot of pain."

Negotiate: alternative solutions, "I'm willing to try an anti-inflammatory first. But if that doesn't work, can we make sure there's pain medication ordered as well? Thanks!"

Emotion Regulation

Emotion Regulation is the ability to respond to a variety of scenarios in a manner that is socially acceptable yet flexible enough to allow for genuine reactions. Being able to control how you react to a situation is essential when it comes to managing how you might be impacted by a situation.

  Personal Example of Emotion Regulation

One day I was feeling sad about my chronic illness. I was telling myself I looked fat and was lazy. I felt really bad about it too. I really just wanted to check out and take a nap. That's until I went ahead and changed my thoughts which influenced my feelings and behavior. Instead of telling myself something negative, I went for something more positive. Instead of saying I was fat and lazy, I told myself I was chronically ill and doing my best. That made me feel a bit better and I felt a lot of empathy for myself; then I was able to get up out of bed and start the day.

Mindfulness

Mindfulness applies to distress tolerance, emotion regulation, and interpersonal effectiveness skills through observation. By observing what is going on around you, this allows you to fully engage yourself in the experience without labeling it as good, bad, or anything in between. The benefit of mindfulness is that it quiets your mind and gives you a way to acknowledge all your thoughts and feelings.

  Personal Example of Mindfulness

I was really stressed out about being sick and having a feeding tube that I just broke down. I started to cry with no judgment. Before I knew it, all the stress I hold in my neck, shoulders, and back evaporated. It was like magic. Suddenly, as I noticed the lack of pain in my body, I stopped crying in awe. For two days I noticed every little thing about not carrying that weight on my back and ended up having a really great two days.

DBT for Chronic Pain

As you can see, DBT brings a lot of hope to chronic pain sufferers. This is because chronic pain and anxiety go hand in hand. Treating anxiety is one easy way to lower the intensity of a person's pain. While it may not fix the root cause of pain, it can allow a person the freedom to make intellectual decisions about their care that isn't influenced by anxiety or fear. This alone can unlock doors for those with painful conditions.