G ain and/or keep motivated to hang-on by thinking about, considering, & create plans w/ my kids.
R emind self that experience tells me it will eventually change/improve some.
O riginate plans of what I’d like to do when I begin to feel better, when symptoms are tolerable.
U nderstand, learn to better recognize and avoid triggers when possible.
N ot everything has a solution, sometimes just have to deal, breathe, live through.
D on’t fight too hard, forcing or thinking failure may actually make matters worse.
E liminate self-destruction, if self-care or coping strategies aren’t working, don’t let it bring me down.
D oing best I can in the moment, so be patient and forgiving to self, stop the blaming of self.
During flares and/or low points.
Helpful free resource I discovered on twitter to help with relaxation that may be beneficial to others as well. https://t.co/QVGhvEwZLZ?amp=1
The Sacrifice, written by my daughter Carmen, was published on Amazon in May 2020. This is her 2nd fictional novel that has been published. In her latest book, the main character becomes sick and eventually diagnosed with gastroparesis. Carmen does a fantastic job describing the ordeal that someone with gastroparesis may go through prior to, during, and after being diagnosed. While Eden, the main character, learns more about what's going on with her medically and how to best deal with it, she is faced with additional (non-medical) life problems as well. Through it all she tries to rely on family and friendship, while also learning more about herself. THE SACRIFICE is a fictional, creative, and emotional read. While much of the book is realistic, including the gastroparesis descriptions, there are also some unexpected twists and an element of supernatural in this book as well. Carmen’s description and details throughout the book are so vivid that it’s easy for the reader to believe they are actually there among the characters, I know I did.
About her writing, Carmen states,
"I never thought that I would be the one to write books while I was still a kid. But here I am with my second novel. I have always enjoyed writing for the most part, but during the past few months, I am truly starting to realize that I have a passion for writing. When I was just nine years old, my life completely changed. My mom was diagnosed with gastroparesis. I didn’t know what to do, or how I could help her, when she was always feeling horrible and in the hospital. With family by my side, I learned a lot throughout that year, and continue to learn more things each day. At times, I’ve felt like everything was pouring down on me, but didn’t really know how to handle it all. I eventually learned how to open up to my family and lean more on my faith. My goal is to use my writing and experiences, along with creativity, to spread messages of encouragement to others.
I was inspired to write THE SACRIFICE because it describes the struggles teenagers can have when living with or trying to survive chronic illness and family challenges. The disease, gastroparesis, that I included in this book is the same disease that my mom has been living with. I may not have the disease, and I may not be able to feel the pain that my mom does, but I see the pain that she goes through every day in my life, and that gives me the ability to relate to it. This book is fictional and has some unexpected twists, but also expresses to the reader that you can make it through whatever troubles you are going through and you should embrace what life gives you. I hope that everyone who reads this book learns something from it as well."
Summary of THE SACRIFICE:
“Eden is a seventeen-year-old girl that is enjoying her last summer before senior year, but an unexpected curveball gets thrown at her with a life-changing disease. Her twin brother, Bennett, and best friend, Carter, stay by her side, but once a tragedy happens, she begins to feel the pain that she never imagined having. One letter ends up being the mystery that she wishes she never opened up. Will she be able to find closure, or will she give up on everything that she's ever worked for?”
You can purchase your ebook or paperback copy of THE SACRIFICE from Amazon now!! https://www.amazon.com/dp/B0892DJV6G/ref=cm_sw_r_tw_dp_U_x_12-0EbYPCRE
Carmen’s first book, UNBREAKABLE, is also available on Amazon.
"Difficulty creates the opportunity for self-reflection and compassion." - Suzanolori Parks
The year of 2020 has been a memorable one for sure. For the rest of our lives, we will remember this year as the year of the Covid-19 pandemic. We will remember being told to "shelter at home" and "social distance" at least 6 feet away from others, though physical distancing would have been a more accurate term. We will remember the closing of movie theaters, malls, parks, and beaches. We will remember that churches were required to close their doors and hold services online instead and all sports were cancelled. We will remember how we were instructed to remain home and not meet up in groups outside of our household. We will remember how colleges and schools were closed and students sent home for online distance learning instead; funerals and weddings postphoned or forced to be held virtually or without attendees. We will remember how a lot of businesses and restaurants had to modify the way they functioned. We'll remember hearing that employees who could work from home were told to do so. We will remember dentists, eye doctors, and even medical clinics closing to help decrease infection risks, to help "flatten the curve", and to save on necessary medical supplies (PPE, masks, gloves, face shields, etc) that were below adequate quantities in hospital settings. We'll remember how many healthcare workers, truckers, and grocery clerks worked hectic schedules to meet the needs of others, while putting themselves at additional risks. Nursing homes and hospitals not allowing visitors, their patients being isolated and alone will also be a too hard to forget memory. And I can guarantee that people will remember the lack of toilet paper, hand sanitizer, hand soap, and even meats in the grocery store. The daily news about Covid-19 was disheartening, frightening, and at times overwhelming while our communities tried to adjust to all the changes this virus was unexpectedly creating in our lives.
However, even amongst the sickness, negativity, uncertainty, and fear there there will also be positive memories shared along the way. Some parents were able to spend additional quality time with their children, some families actually had time to eat together at the table again, people who were always on the go were able to sit back and relax a little more than normal. Life slowed down for many, books were read, Netflix and other TV services utilized, favorite series/movies were binge-watched, walks and bike rides in nature increased, communities came together in support of those on the front-lines, new hobbies were discovered, and house chores that had been put off time and time again were finally completed.
Personally, I found it interesting when reflecting on the impacts this virus had on my family. Yes, we were worried, concerned, and fearful about the severity and destruction that this virus was causing in the the world, in our country, state, and town. We definitely felt increased anxiety from this health crisis. However, our day to day schedule was not thrown out of sorts like some. The major change in our household consisted of my kids being at home completing school work, instead of at school. My daughter wrote her first fictional chapter book, which is being published, and is already writing her next book. My son had time to discover additional college scholarships to apply for. More meals (and desserts) were cooked at home, while less trips were taken to the grocery store in an effort to reduce the risk of us being infected. We also stayed away from other family members outside our house in hopes of ensuring noone became infected with Covid-19. Instead, we focused on talking with my parents and other family members on the phone or over facetime. When we did happen to see my parents, we kept our visits at a distance and outside. Doctor appointments being altered was another change for me, like many other patients. Instead of in-person clinic visits, I had phone call visits with my psychologist and a virtual online visit with my gastroenterologist. Both telemedicine styles felt strange, but were still effective.
Surprisingly, I also noticed that the way I perceived myself during this pandemic was kinder and more understanding than how I often viewed myself prior to the virus. I figure this is because I felt like I was more connected with the world, not insignificant like I sometimes believed, as everyone was expected to remain at home as much as possible to help save lives. I felt like I had "permission" to live my "chronic illness life" because it resembled what "normal healthier" people were doing as well right now. (Yes, I know I don't need permission to respect my limitations and do what's best for my body.)
Which brings me to my intentions of what I'd like to keep and carry with me after the pandemic is over. Instead of returning to minimizing my worth and value, I want to grow from this experience.
Four goals come to my mind that may help me achieve this personal growth:
1) Continue recognizing and appreciating the blessings that surround me. Enjoy moments, make memories, and don't take for granted the time I have with my family.
2) Always walk in faith. Everything happens for a reason. We're never alone. God's in control, not us. Stop wasting precious time and energy fighting things that are out of my control.
3) Add variety to my days. Illness may limit me in what I can do or where I can go, but that doesn't mean that my days have to be meaningless or empty. I need to ensure that I make time to participate in different activities during the day. Some examples of tasks I can look forward are....
4) Improve Self-Compassion by having a less judgemental and critical inner voice. Replacing my negative thoughts with more kindness, understanding, and forgiveness will be my ultimate goal. I believe that I was already making some progress in this area with the help of my psychologist, but definitely still have room for further growth.
I know that I am human, am imperfect, and that everyone will experience difficulties in life, it's inevitable. I am going to continue trying to be more mindful of my thoughts and feelings in the moment, and accept them without senseless judgement. I haven't mastered this mindset yet, even with years of attempting to, but I'm not giving up. This will certainly be a struggle for me at times, maybe more than I like to admit, but it is worthwhile because I am worthy. In order for me to be successful, I am going to have to allow my vulnerabilities to surface. I will have to face and acknowledge the emotions I experience, including the physically and emotionally painful ones, allow myself time to actual feel them without avoiding or running away from them (yikes!), and then eventually, hopefully release the negative hold they have on me. As I've heard before, "life is messy", but in reality the messiness and beauty we experience is something that connects us all together. Everyone will encounter hardships and challenges during their journey in life, and though we may feel lost, isolated, forgotten, or alone, these feelings are not uncommon or unnatural.
Message: The Covid-19 pandemic will live forever in our minds, and will likely be around to haunt us for quite a while. Many aspects of this virus and it's impact on our lives are out of our control. For those of us that are always searching for the purpose, let's try to hold on tight to the positive personal and community growth which can be possible and present as well.
Covid-19 & Chronic Illness thoughts
Isolation and missed/canceled events are not unfamiliar.
Children are at home all day with husband and me, which means I feel less alone.
Chronic illness has in a way helped prepare my mind and body for this situation.
I do miss personal time with my mom, dad, and other family members.
Some information & emotional overload from all of the uncertain and at times scary Covid-19 news.
I can empathize with others & how their life may be impacted from "shelter in place" orders.
Goals prior to pandemic-
Trying to find meaning of life & encourage myself to get outside house a little bit each week.
Appreciating the small things that we often take for granted.
Continuing to improve my personal coping strategies for things outside my control.
Work on finding new activities, hobbies, purpose, and enjoyment in home atmosphere.
Learning to treat self with compassion, when had to cancel/avoid events due to health concerns.
Responsibly monitor energy output and symptom management when being actively involved.
Try changing the atmosphere for a little "me time" even if just by running a short errand by self.
Take time to stay educated about things that are important and/or interests me.
Consider risk v/s benefit when determining my choices and actions.
Goals currently with pandemic-
Remain at home, with exception of car ride or necessary medical appointments.
Avoid trips to the store as much as possible or being around public.
Wear a cloth mask when I have to be around others outside of my household.
Continue to work on finding activities and hobbies that I can enjoy at home.
Continue getting my infusions, unless they begin to deem them unsafe due to Covid fears. Consider self-care options such as "me time", long baths, music, etc..
Responsibly monitor energy and symptom management.
Fears Present During the Covid-19 Pandemic-
Reaching out for medical help returned as don't want to increase their work load or bother them.
Concerns over attending medical appts because of increased risk of infection.
Will son have a high school graduation among all community changes?
How is this pandemic going to affect college preparations and high school plans for next Fall?
Family members risks to being infected, treatment if they do (including being isolated alone).
Summer vacation(s) will they be even be possible before college begins?
Thankful in ways that no longer have central line, would increase possible exposure to covid-19.
Will I be able to receive my routine infusions, or will they get canceled due to infection risk?
Worries over how virtual medical appointments will go with my psychologist and GI doctor.
So how is Covid-19 affecting my life with chronic illness?
My emotions have been everywhere. From feeling thankful, appreciative, concerned & worried to sadness, disgust, fear, & confusion. Education & awareness is notably important, selfcare & breaks from listening to news are essential, stories read/heard are heartbreaking & terrifying. The evidence of kind deeds in communities are reassuring and comforting. Mentally and physically, I'm exhausted from dealing with already present chronic illness and now analyzing/deciphering the relevant news articles while trying not to become too anxious from all the fears, destruction, and uncertainties this Covid-19 coronavirus is creating here in U.S. and across the world.
My therapist and I have actually been discussing so much of what I've stated above, among other things, during the past few sessions. I understand and can relate to so many experiences being had & shared by the “normal” & healthier population. Whether it be their loss of jobs, lack of closure and missing students now that school is remote only, missing events that they were looking forward to, or simply becoming bored at home, etc..
Oddly, I momentarily feel less pressure on myself as I am doing exactly what everyone is supposed to be doing - staying home to help flatten the curve since I don’t have an essential job. However, looking into the future is dicey for my emotional health, as I realize that the majority of those impacted WILL be able to RETURN to the normalcy that they miss so much, while us with chronic illness will be left behind to keep living our “chronic illness normal”.
I’m happy for those that are able to return, not having to live in isolation for years and years, but I do hold out hope that they will retain compassion for those with chronic illness now that they’ve had a small “taste”. (And that’s without them having daily symptoms we must endure along with isolation.)
Some of the recent news over the past months has been thought-provoking and scary to read. Especially, the reportings of how some hospitals were considering who’s life is worth saving, who has the best chance of surviving and best quality of life to preserve if medical resources are maxed if the hospitals become overwhelmed. Hearing about C-19 deaths, usually followed by “but they had underlying conditions” or that we should reopen immediately because the illness is only dangerous for the vulnerable, the elderly and ones with chronic conditions, is defeating. Not because I’m worried too much about me, but because it reinforces the opinion that those with vulnerabilities (age or chronic conditions) are less important, which I strongly disagree with and because I know and care about many people with underlying conditions and/or in their older ages. (I admit it’s kind of ironic that I sometimes view myself as less, even though it's not true, but get angry/furious when society labels others that way. Sadly, the comments reinforces that my thoughts of being less are actually mirrored, possibly even created, by the larger society.)
Death rates, regardless if they had other issues prior to Covid or not are worrisome to me. Deaths are deaths - they all were someone’s daughter/son at some point. Majority have siblings, children, or other close loved one’s, regardless of blood connection or not. They were people. And because of the impact C-19 has had on hospital restrictions, so many have died hurting, scared, and isolated from human contact. It’s heartbreaking, sad, and scary especially when considering if it were to happen to someone I know or love. Strange how Covid has brought out the absolute best in some people, but in others, ugly selfishness roared.
Now some people are getting very restless. I can understand and relate to this in some ways. I am fortunate that my parents live in the same town as me. I have been able to keep in contact with them and briefly see them a few times from a safe distance - but I do miss spending one on one time with them and hugging them. Other than that, and concern over catching the virus and then spreading the virus when going to store for necessary items or medical appts, my life has not changed too much. But I do remember what it felt like when I had to miss work and eventually had to stop working (teaching in my case), which so many are having to do now. I’m familiar with finances being extremely tight or questionable, when there were plans I was looking forward to or something I really wanted to go or travel to but had to cancel, reschedule, or miss out on completely. It sucks!! However, for the most part, in a relatively short while, most people will be able to return to their normal lives. Which is good news for most.
I’d love to think that when this is all over, society can have a better understanding of what those with chronic illnesses deal with for years/lifetime, decrease the cold hurtful comments of “must be nice to be home all the time”, or stop ignoring the emotional impact that being chronically ill (including isolation it can cause) has on one’s overall life. It sounds odd hearing top Drs, government officials, and society discuss the mental health impact that “shelter in place” or “stay home” orders can have on one’s emotional life - including financial strain and suicidal thoughts - yet I guarantee many of them have and will continue to disregard or dismiss the viewpoint/impact of chronic illness on daily life for years/life when concerns of epidemic cease. Don’t get me wrong, I’m not minimizing the impact that the virus or shutdown has had on the entire population as a whole, I know that it has been extremely challenging and difficult for everyone. I empathize and feel absolutely horrible for those that have lost their livelihood, loved ones, and/or their daily lifestyles.
Telehealth has been slowly making it's way into society over the past couple of years. However, amid the coronavirus (COVID-19) pandemic that is reaking havoc across the world, it has become a necessity. Doctors and medical centers across the United States have begun to depend on telehealth in an effort to keep patients and medical professional safe from infection. Due to how contagious and deadly this virus is, everyone is being encouraged, and in many cases, ordered to remain at home and "social distance" themselves from others. However, other health issues and concerns, whether physical or mental, do not disappear. Therefore, telehealth is emerging as an essential way for people to receive medical attention over the phone or via live video interactions, without having to further risk acquiring or transmitting the virus.
Living with chronic illness is challenging. Open communication and dependable relationships with my doctors is important to me. When COVID-19 began it's negative impact on the United States a lot of things began to change. As cases started appearing in NC, all of my medical appointments were rescheduled out of fear and uncertainty over what to expect with the virus contagion amongst our communities. As weeks progressed, the serious threat of the virus didn't leave, in fact it increased quickly. Telehealth began emerging.
I see a clinical health psychologist a couple times a month to help me with the impact that Chronic Illness has on my life and to help me navigate the emotions and stressors that coincide. Missing or rescheduling an appointment occasionally is acceptable and manageable. But life doesn't stop, my emotions and thoughts continue, and the maintenance of my mental health is important. Unfortunately, the virus is not going anywhere anytime soon. I have no idea when it will be safe enough to visit my doctors face to face.
Yesterday, I agreed to attempt a therapy session over the phone. Prior to the appointment, I was extremely anxious, though not really sure why. I was literally afraid. My head was spinning, my eyes were teary, and my chest heavy as I awaited the phone call. For the life of me, I don't know why my body was responding this way, especially being that it was just a phone call and with someone that I know and trust. Maybe it was because I was at home, with family members in the other room. Maybe I didn't feel as "safe" enough to talk openly and privately because others may hear my thoughts and feelings. Maybe it's because I couldn't walk to my usual room and then leave after the appointment was over. Maybe it's because I didn't trust myself to open up enough, feared awkward silences or inability to talk my through the session. Maybe it was the increased possibility of distractions around me in my home. Maybe it's because I know that body language speaks louder than words sometimes, and talking on the phone takes away that aspect. Maybe it was just simply because it was new and different. Likely it was a combination of all.
Regardless, I knew that I needed to try. And though it wasn't perfect, it worked out alright. Yes, I was nervous when answering the phone. I did feel awkward, especially to begin with, but that's ok. I was able to open up, though did find myself hesitating and trying to hold back thoughts at times. All in all, it was still a worthwhile appointment and I'm glad that I gave it a chance. I expect that I will be having more phone appointments like this, possibly with my medical doctors as well, in the upcoming weeks or months, at least until the chaos of the virus calms down. Hopefully, I'll be returning to my "normal" face to face appointments afterwards.
Everyone has their own personal opinions about telehealth. Like everything in life, it's not perfect. I understand the need for it at the moment, I can admit that it is beneficial in various situations, but I also recognize instances where it is not ideal and may hinder the doctor-patient connection. Personally, I still prefer face to face appointments, but I can see the benefits of telehealth in some circumstances and how it may actually become preferred or more convenient to some. Whether by phone or video, I believe that telehealth will have a prominent place in the future of medicine and am thankful that it is available in times like today.
Edited on May 24, 2020 to add......
I have now had 4 phone appointments with my psychologist and a virtual video appointment with my GI. All of these "remote" appointments are a result of social distancing and new medical protocols due to the Covid pandemic and stay at home guidelines. My thoughts have improved regarding telehealth since my first appointment. I still feel a little awkward for the first few minutes of these appointments, however, being that the appointments are with doctors that I trust and am comfortable with, the appointments are efficient. (It may also help that my mental health and frame of mind have been pretty good through all of this and my medical symptoms, while still problematic have been tolerable for the most part. If I were having a very difficult time physically or emotionally, I believe in person would be better, as visual cues and physical assessment may be more necessary. But, routine follow-ups when issues are not too problematic, telehealth is proficient.
A proud mother, educator, Gastroparesis & GI Motility Disorder Advocate,
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