After some very helpful feedback about my video, I realized my message was not coming across how I wanted it to. My intentions are to educate and empower my clients to advocate for themselves. I provide the skills, knowledge and framework for them to confidently do this. While I am an advocate, I teach others to do that on their own for themselves. With A LOT of help from Trevor Croft Media, I am proud to present my new awesome video! Be Well!
In my life, my greatest stress has been work. It all started in my late teens and early 20s. My parents retired when I was 14. A few years and a lot of medical expenses later, I found out that they had been paying a lot of money for my health insurance. The health insurance I had wasn’t even that good. At this time, it was difficult to get healthcare if you had pre-existing conditions. I felt like the best way to get insurance was to make sure I had a job that offered health insurance with benefits, or continue to be a college student.
When I took a five-year break from college, I had some periods of time being employed with benefits. Unfortunately, I had to rely on my parents for times when I did not. To be honest, the second reason I had for going to college was to get education. The first reason was to make sure I had a degree so it would be easier to get a job with benefits. While this may not have been true, it was what I believed at the time. It was a total bonus that I was able to get student health insurance while I was in school. It was also a total bonus that I received a quality education and now have the joy of using what I learned every day of my life.
It is so sad and stressful for me that I worry about if a job has benefits as much as if the job is a good fit. When I completed graduate school, I had a really difficult time finding a full-time job in my field that provided benefits. Just finding a full time job was a challenge. I did some contract and part-time work for a year before I finally got the right job.
I loved my job. I worked for two years at a community college and was able to make an impact on the lives of my students by using my education, personal experiences, and strengths. I was given a lot of creative freedom to design and assess my programs. I loved the students I worked with and felt confident about my performance.
Just after the two-year mark of being at my job, I started to get sick. A few months later, I found out it was cancer. All this time, I had been concerned about my mental health pre-existing condition. Now I had to deal with the expense of cancer. I am grateful to this day that this diagnosis came at a time when I was covered by really good health insurance. Because of that, the cost of my treatment did not put me in a place where I couldn’t afford it.
Because of the side effects from cancer, I decided to quit my job to focus on getting well. That was in August of 2015. Over two years later, I am still responsible for finding, and paying for health insurance on my own. While I have been working for the last 10 months, it is only part time, so I do not qualify for benefits. There is no way someone with my health can go without health insurance.
I face a fair amount of frustration when it comes to working and having chronic illness. With illness comes fatigue, pain, depression, anxiety, and fear. I have an underlying fear that I will continue to get ill. While that is not likely (from an optimistic stand-point), the fear is still there. With all of this, I have not been able to commit to a full-time job. I have a lot of anxiety being in an office setting because I tend to compare my work with others and I feel like I always have to explain myself – whether I am doing a good job or not. I get tired easily and have pain if I sit too long. I tend to be pretty sensitive and emotional. I always have been, but starting menopause after a total hysterectomy at 32 didn’t exactly help.
In my current job, I do not have a consistent schedule that provides routine and structure. I work in several locations doing different types of jobs that require different types of energy. At least once a week, I am required to put in a 10 or more hour day. I thought I would be able to explain my challenges and advocate for myself better than I am doing. I have worked for years on having routine, making time for exercise, fun, nutrition, complimentary medical services, and rest. I have learned that scheduling and planning really helps to maintain balance.
The foundation and mission of my business is to provide self-advocacy education based on my model. I thought I was doing that in my own life. Now I know why I tell clients that the most important step is to KEEP GOING. I feel like I am being tested. I know I am being misunderstood. I am genuinely at a loss because I have no idea how to continue to advocate for myself in my current situation. I have run out of possible solutions. I have gathered and presented facts, I have asked for help brainstorming. And now, I am not being the best possible me I know how to be.
I feel like I am starting to obsess about how I can make my schedule work for me. I have constant anxiety and continue to think about it even when I am not working. This feels like it is throwing off my balance. Because I am spending time obsessing, I am not making time for exercise, eating more than once or twice a day, or spending the time I need to be calm and alone. When I am am not obsessing, I am spending a lot of energy trying to squeeze in time for projects for my business. This brings me so much joy, but I want to have more time and energy to contribute to it.
I have spent a ton of time writing lately. I made a promise to myself that I would post every Sunday. Last week was the first time since February that I didn’t post. I have been working on my book a lot and giving myself some pretty strict deadlines for that content. My new website was launched this week and I spent time communicating with the wonderful Darice at FullCup to make it the best product possible. Trust me, it is. Check out the masterpiece she created here.
I know there is hope. Life really is a journey. If I got to the destination, the journey would be over. I don’t even know what the “destination” is. I do know that the journey can be devastating, exhausting, frustrating, and expensive. I also know it is fun, exciting, and full of love. While I just wrote about the cost of chronic illness-physically, mentally, emotionally, spiritually, and financially, I am still hopeful. I am still resilient and I am going to follow my own model and KEEP GOING.
Perhaps you are wondering what came next after my last post. Either that, or I am overestimating my ability to create suspense.
After graduation, I wanted to go on a big adventure where I could embrace life, travel, and see how others were living. From my difficult year, I knew life was really full of experiences that landed on a spectrum of impact. Life could be exciting, troublesome, boring, strange, unexpected, depressing, surprising, wonderful, hilarious, and much more. I wanted to experience it all.
Having just turned 17 and starting medication to stabilize my mental wellness, my mom told me I was too young to go to college. However, she had no reservations letting me join a program to travel the world with 150 young adults from 19 countries where every 4 days, I would go to a new city, live with a host family I didn’t know, perform in a musical, and volunteer for local organizations. The logic was…interesting, but there was no way I was going to question it.
That year opened me up to a life of adventure, healthy risk, awareness, social justice, navigating struggle, and practicing self-advocacy. The lessons I learned and things I experienced are with me to this day. I made lifelong friends. I see some of these friends pretty regularly.
I learned early on in my diagnosis that I was in charge of the direction of my life. Making it through that year, I promised myself that whatever challenges I faced, I would invite them to come along because I wasn’t going to get stuck in their ability to stop me dead in my tracks. I had a life to live, dreams to dream, and many adventures to come. Determined to move forward, I accepted my diagnosis as the super annoying shadow that would follow me in my life in the sun!
Stay tuned for practical ways and tips about how I have been able to stay well.
Much more to come
After having cancer, I started noticing types of recurrence in my life. Some recurrences are comfortable, while others are not. Some of those are fear, anxiety, grief, anger, frustration, guilt, disappointment, joy, hope, courage, fun, friendships, kindness, and laughter.
My biggest fear of recurrence is cancer. I can’t decide what to do with that fear. I have wondered if it will come back, when it will come back, and how to stay optimistic when I know others who are experiencing it for the second, third and, sadly, last time. I know it only takes a single cell to make it spread. One little cell that is stronger than any previous treatment. That cell has the ability to take your life hostage all over again. I HAVE SEEN IT HAPPEN! It can fuel a disease that will spread in your body.
I’ve had a shift in my focus. It isn’t just cancer that spreads. All of the things I listed above have the ability to go viral. My fear, anger, depression and anxiety can take me hostage as well. If permitted, these can cause just as much damage to my wellness. I will have more physical pain, my nutrition and exercise will be impacted, I will put less effort into my social life, and my energy will be drained. Now I know it is not just a single cell that has this huge impact. It can be a single emotion, act, or life event.
Guess what else spreads and goes viral?? Love, friendship, hope, kindness, laughter, courage, and fun! If I hadn’t have had cancer, I would have missed out on so many of the positive experiences in my life. I have met so many new, lifelong friends in all of this. I have gone on adventures, tried new things, and increased my wellness in a way I never thought possible. I am well and SO alive and experiencing all of the parts of life that are both comfortable and uncomfortable.
In my support group, the leader once said that it is vital to understand the expression, “This too shall pass”. This expression is most often used to comfort those in times of discomfort. But what about the times of happiness, excitement, and comfort? Unfortunately, this too shall pass. Life is change. Experiences within that change develop our character, values, and the ways in which we face adversity. Change is constant. It is what causes recurrence, comfort, discomfort, and viral activity. Fear and misunderstanding of that change removes the opportunity for development. It paralyzes us and makes things stagnant.
These concepts are big, exciting, and scary for me. Life will keep happening and changing. I have decided to move with it. What comes next is somewhat unpredictable. I must choose to experience the comfort and discomfort for this to work. Hopefully, the discomfort will recur less. I have to be ready for it and bring the strengths and values I have developed along the way. I invite you to join me in this choice.