Socializing in a Pandemic

As the year is drawing to an end and the holiday season has begun, it got me thinking about how different socializing is with my loved ones.

The holiday season doesn't hold much significance for me although my family does have its own traditions. For Thanksgiving, my parents and I like to go to my favorite Chinese restaurant for the treat of Dim Sum. Since purchasing my home a few years ago the tradition has been for my dad's family to join us for Christmas at my house during the first week or two of December for a meal cooked by my parents. Then my parents and I like to have a meal just the three of us on actual Christmas day. My parents and I decided to downsize our holiday meals a few years ago and it has greatly reduced holiday stress all around for each of us.

This year is different though thanks to Covid. My parents and I have been having a meal together once every week or two. We all wear masks and socially distance from one another. We don't even hug each other anymore. We were planning to have Indian Tacos together with my boyfriend, Mike, for Thanksgiving. That was until Mike was exposed to someone with Covid so both of our families decided to cancel any get-togethers. We both remain asymptomatic and are awaiting testing. To truly know if you're positive for Covid, it sounds as though daily testing is what's actually needed. According to Harvard Health Publishing, if you test too early or too late, there aren't enough viral particles to detect the virus. This has made it more difficult to determine when Mike should be tested as we are uncertain when exactly he was exposed or when that person started experiencing symptoms. We also didn't want to risk a false negative and then expose anyone in our families to us if one of us is actually positive for Covid.

My dad is the youngest of 8, the oldest being in her late 80s. As he and his siblings are older, we decided not to host a Christmas meal for the family. My parents and I still plan to have a meal together, however, that is subject to change as life is unpredictable during a pandemic.

Being apart from family for the holidays is a small price to pay to help maintain my health and theirs. I greatly miss being able to hug my parents but my priority is keeping them safe. This is particularly true as I am still working in the medical field and am exposed to many more individuals than my parents.

Technology has been a blessing during this year so that I may text, call, and video chat my parents and my nieces. It isn't the same as an in-person visit or hugging a loved one. It remains an option to be grateful for though. One of my patients told me that every Saturday he and his wife video chat with all of their children over dinner. Each week someone chooses a recipe and every household makes the same meal that they then enjoy while video chatting together.

It has been difficult to not be able to see my friends or my nieces as often as I usually would have this year. I did take the risk of spending a day with my best friend and her family during the summer, Mike and I went on a vacation to Colorado, and I had an outing with each of my nieces this Fall. I feel as though it has been particularly hard on my nieces not being able to have our usual outings as I want to keep them and myself healthy. I'm fortunate to have the companionship of Mike to help me cope with the stress and isolation of this year. Since we are our own grouping, I am able to receive all the hugs from him that I'm missing from my parents. Not everyone who is isolating has that blessing. I am grateful that Mike and I started dating prior to the pandemic starting as I would not have felt comfortable being involved in the dating world during these times. 

Our families have been kind to offer to drop off a part of their holiday meals so that we may still partake as we are able without potentially placing them or others at risk. This holiday season looks quite different than years past but hopefully, we'll be able to look forward to many more holiday seasons together if we remain safe and cognizant during this time.

As the progress of a Covid vaccine advances, I'm hopeful that by this time next year the world will be very different from what it is like today. I wish you all the best health - physically and mentally during these times. Reach out to loved ones as safely as possible - not only for your well-being but theirs as well. We all need one another, perhaps more now than ever. 

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.

Throwing Out New Year's Resolutions

I'm just going to say it, I think New Year's resolutions are a bit silly. Sure, I've made my own resolutions for the new year in the past. They were usually for some type of betterment of myself. Some new, improved version of myself. A healthier, skinnier, this or that better me. And like the majority of people, I didn't keep my resolutions. And then I asked myself "Why am I waiting for the new year to start accomplishing my goals? Why not start now? Why do I need a holiday to do something for me?"

So I threw them out and I started doing things for me in the now, not for some day. This was particularly true as I found my own strength and freedom after my marital separation and divorce. I promised myself to do more things for me and I made a list of what I wanted for myself. And so far, I've kept those promises to myself. I didn't wait around for a few months to pass for the new year to come around. No, I made a change that day and with the first opportunity that came along for me to act on my promise, I did. I want to stretch my wings and experience the life that I want without fear that I won't have someone to share those experiences, those adventures with along the way. I'm determined to enjoy and experience life regardless who is by my side or rather, who isn't by my side. This is my life goal and it isn't waiting around for a particular day. It's happening now and I best be on board or I'll miss out.

We don't need some day. We need now. Life is too short and too complicated, particularly when chronic illness is involved. We never know what tomorrow will hold. The days change from one way to another in a moment's instance with our health challenges. When we have the moment, let's grab it. Let's not wait around for the next moment.

Since I stopped waiting for the next moment to come along I feel more alive, more content. That's what I want for all who I cross paths with along my life's journey. I want to feel the thrill of life pulsing through my veins. I want us to enjoy the ride together with no one on the sidelines waiting.

What's your life's ambitions? What do you want out of your life? This isn't a resolution, this is a life change. It's more important than a once a year resolution, this is for a lifetime. With something this large, it can require soul searching to discover our heart's desires to determine what really makes us happy and excited about life. Once we make this discovery we can start to establish our game plan for achieving what we want out of life. Every game plan gains momentum when we start with small, achievable steps that lead us to our ultimate goal. Let's make a plan and go for it. Get out there and enjoy life for all its magical ups and downs, twists and turns.

Accommodating Holidays

The holiday season is already starting. It's a rather busy time for the majority of people between parties and meals amongst family, work, and friends circles. It's not even December and my month is already booked with holiday festivities.

The holidays tend to be a stressful time for everyone. The hustle and bustle of preparing our homes, traveling, hosting others in our homes, gathering gifts, attending celebrations, and more. However, for those of us with chronic illness there is an added stress of accommodating our health around the demands of the holidays so that we may also enjoy the holidays.

Whether we're traveling or we're remaining local, there's always concerns surrounding the holidays that we need to address for our own self-care and enjoyment.

I've already had to make such accommodations by changing the date of the gathering I'm hosting so as to allow myself to be able to physically attend a work gathering. My parents and I were concerned that I wouldn't be able to physically complete both one same day, even though the times didn't conflict. But would I physically feel up to both parties in the same day? Most likely not.

Many of us have dietary restrictions to take into consideration. This is easy enough to control if we're hosting holiday celebrations but is another ball game if we are visiting another household or party. We may not be able to enjoy the available foods or we may need to limit our intake to reduce the side effects of eating. This can also apply to activity accommodations. For example, I must be mindful of what and when I eat when wanting to participate in activities as food intake worsens my short bowel. This was another consideration for scheduling parties as I often experience pain and nausea after eating that can last for the remainder of the day.

For some individuals activity reduces GI distress whereas for those like me, it increases GI distress. I'm able to better control my short bowel frequency when I limit my movements. In order to enjoy activities that require physical activity I must limit my food and take medications to slow my short bowel.

Pill burden is another common accommodation, particularly with meals. For some this can be embarrassing as it can lead individuals to feel that it draws attention to themselves and their health conditions. Others are bothered by the sheer number and frequency of medications required. When traveling, toting around multiple medication bottles is a hassle that takes up valuable space for other necessary items, especially when flying. Yet keeping medications in their respective bottles can be necessary when flying to reduce confusion about medication necessity and to comply with states laws regarding prescription labeling.

Flying tends to always weigh heavily on my mind with my health condition. This was worse when I had an ostomy but still remains with me even without an ostomy. When I had an ostomy I had to be mindful of how many supplies I had packed, preparing for a TSA search, always worried that I would encounter a TSA agency who would try to challenge my medical necessity for my supplies. What if my ostomy leaked while I was in the airport or while flying? Did I pack enough supplies to last during my visit? Now I worry more about restroom access due to my short bowel. Will I have enough time to use the restroom adequately before boarding? What if we have a delay on the tarmac and we aren't allowed to exit the airplane? What if I urgently need to use the restroom and I'm not allowed to use the lavatory? The what ifs run rampant when I'm flying.
The what ifs reduce in number when traveling by car as public restrooms are fairly excessive in number in the United States although does decrease in number when traveling through rural areas. For travel tips with an ostomy, review the UOAA's Ostomy Travel Tips.

Whichever holiday you may be celebrating, wherever you may be celebrating, I wish you the happiest of holidays and enjoyment with your loved ones.

Finding Gratitude

Finding gratitude for what life throws at us isn't always an easy task, especially for those with chronic illness. The daily fights for productivity and survival against a chronic illness often leave us physically and emotionally exhausted with little left over at the end of the day for much else. It isn't uncommon for us to feel as though the world is against at times, that we are being punished, that there is no end in sight. We tend to forget that every moment, every trial has something to be gained from the experience.

Gratitude may be found in the smallest of details, tucked away and overshadowed by the stress and chaos that is life. Our darker moments challenge our ability at gratitude; coercing us to focus on our trials and discount the positive, the strength within us that carries us through, and our own progress. Even with distractions, if we look close enough we can find a bit of gratitude shining through the cracks of the darkness.

During my darkest moments of this year my soul was breaking. My turmoil left me feeling terrified and buried alive. I was suffocating from the dark's heaviness. At the end of the passage, my eyes began to focus while I pieced myself back together, I saw the light. It showed me that I survived. I grew. I was becoming. The light was there the entire time, waiting for me to notice. I focused on my own darkness rather than looking for the light. Our default is to focus on our trials. It is far more difficult to shift our focus to find the light.

I look back on my life and I see the light shining brightly through each dark moment of my health issues that left me near death and the debilitating bouts of depression and PTSD. Without these moments, my life would have followed a different path. Guided by my own health experiences, my education and career paths have focused on the medical field and how I can help others with their own health issues. I'm grateful for the paths I'm following; without the darkness of my health challenges, I would be on a different path and I wouldn't be who I am presently.

This gratitude was not easily found though. It would take years before I would see the goodness of my chronic illness. It can be challenging to see the purpose in the darkness; we are left feeling frustrated, defeated, and tormented at times. I held onto my anger, resentfulness, and pain of chronic illness for far too long. It robbed me of appreciation, gratitude, and happiness. When we begin to release ourselves from the bondage of harmful feelings, we allow ourselves to discover purpose through the light.

You may be going through a distressing time yourself or remain haunted by past experiences. It may be difficult to understand at this moment what the purpose is of your trial and to appreciate the darkness. In the quiet moments of the day let your mind take a moment to reflect upon the goodness of your time. It may be small, but the goodness is there waiting for your acknowledgement and gratitude.

Celebrating Birthdays and Survival

Today I am 30 years old. Most people fret over reaching 30, leaving their 20s and "younger days" behind. My mind is elsewhere today as I survey my life in awe. I've miraculously reached an age I never believed I would reach. I have surpassed ages I shouldn't have passed. Like many with chronic health issues, being told that I shouldn't have survived a situation or I'm not likely to live past a certain age isn't new to me. I've heard such statements since I was 9 due to complications and medical negligence and again throughout high school and into college during a several year recovery period from my reversal and subsequent complications.

I recall lying my head on my mother's lap as she sat on the couch stroking my hair and I told her how I loved her and said my farewells. I could feel the life draining from me, peace beginning to surround my spirit. I was uncertain how many more moments I had remaining but I knew they were coming to a close. I watched her tears run down her cheeks as she gazed upon and told me how she loved me. I had never felt such peace and have never again since this time.

I was back in the hospital soon after, veins being pumped with electrolytes and blood coursing life back into me for another day. If this had been delayed in its delivery by a few more days, I wouldn't have survived. There were many weeks my doctors weren't sure if I'd live to see them the following week due to risk of heart attack or brain seizures. Over the following years my health would gradually improve and become stable again.

Due to my ongoing health crises, I came to fervently believe that I would not live past the age of 21. I held this belief so firmly that I completed all of the end of life documents and arranged the details of my funeral according to my wishes and distributed copies of this information to my executors of my will. This belief was further cemented as I began to develop precancerous polyps within my stomach and my pediatric GI doctor predicted I would develop stomach cancer by the age of 30. The treatment of which I was still unsure I would be willing to subject upon myself.

My conviction was so strong that I was left amazed when the clock struck midnight on my 22nd birthday and I was still breathing. How could I still be living? I have wondered this many times throughout my life. I have been prepared for death for 2 decades and at times I feel as though I have been teased with death and the chance for peace from my health issues, particularly on the most difficult days. I remain ready for the day of death, waiting for the day that I was told would come so long ago.

And yet I continue to survive. And survive quite well in my opinion. I had many years of struggles and presently I am battling chronic nausea, pain, and difficulty eating after a recent hospitalization. I remain standing amidst the battle. Cancer free. Precancerous polyps free.

I have learned a lot over the course of my disease and I have gained a unique understanding of myself, life, death, the world, and what Familial Polyposis (FAP) means for it all. FAP isn't a death sentence to me. It doesn't guarantee to shorten my life expectancy...it simply complicates my life. I won't know how it affects me otherwise until the progression of developments occur. FAP affects each person differently to a drastic degree. My grandfather had very little problems after he received his ileostomy until his death at age 81 from stomach and esophageal cancer due to the FAP. Others are not so fortunate and children are presenting with symptoms and precancerous polyps at younger and younger ages. Each person's story and battlefield is different though in the position of landmines. I refuse to believe I have no choice in my footing amongst the landmines though.

Life's a Polyp Shop

Donate to NORD FAP Research Fund

Counting on the Best

In honor of the year closing and the tradition of new year's resolutions, look back on the year and consider what you would like to be different in the year to come. Many times an individual will use this time to turn over a new leaf, start or stop a behavior, or make progress on a long time goal. I'm not drilling on the same old boring notion, rather since this is a health blog, I'm going that direction.

Has the year been a good one for health or has it been full of illness? For those of us with chronic illness, we wish for every year to have good health. Let's also take the time to add on some new or continued behaviors to encourage good health. Perhaps exercising, eating healthy, reducing stress, following our doctor's recommendations better, complying with our medication regimes for a few examples.
I believe the mind and the body are connected, an issue in one area will appear in the opposite. Not only is taking steps to protect our physical health important, but so is protecting our psyche and mental health.
With chronic illness, we may not be able to change the diagnosis or even the prognosis, but we can take steps to improve the present or delay the inevitable. That can be physically and mentally. So let's do that. Let's make everyday count, actually do it instead of say it.

This can be very difficult when we don't feel well, every step toward a goal makes a difference though. Often times the more active we are, the more our energy level increases and the better we feel physically than when we are sedentary. I notice this in myself when simply working. Periods in between jobs or during breaks, my symptoms tend to flare up even to the point that it's a wonder I'm even able to function for half a day. But when I return to work, my symptoms lessen and my body regulates itself again. Simply because I'm doing something. If you're feeling depressed and it's making it difficult to interact with others and enjoy activities, remember that even the smallest effort to return to previous enjoyable activities is a step forward. Depression sucks us into it's spiral, it affects our brain's chemical balance and we simply lose interest in once enjoyable things. Our mind wants us to stop doing things, our thoughts enable that behavior. If we change one thing - our thoughts, emotions or behavior - then the rest will change. It's a cycle and it can be broken.

Set your goal, find the information and support to help make it reality. We've all been there at some point or another and we're all there in it with each other. Together, we can make changes or continue current practices and welcome the new year with high hopes and actions.

Thanks of Health

I'm going to fall into line for the Thanksgiving holiday and review blessings received. I've discussed in several earlier posts about the journey I've overcome with my health and the ongoing issues that plague my days and the countless blessings I've received to endure. So I'm not going to go over those yet again.

What I am going to do though is encourage you to remember your own blessings, your own journey and struggles.
Every day is a new day and no matter what your previous days have been like, it doesn't mean that the future days will be same. That's true for good and bad days. We never know what will happen, we can only prepare ourselves for the best and the worst. Through our actions to do the best we can with any given situation and complete precautionary steps to prepare and prevent, we are most apt to deal with any event. We can't just sit back and expect something to happen or to change, we must make the change ourselves. It is not fair or right to expect anyone else to make the change for us. Like so many things, it starts from within ourselves and with us.
Whether you're struggling with finances, coping, or physical health - none of it will change on it's own. You must take a step to force the change process forward. Ask for assistance, information, support and rediscover your own strength and resourcefulness. Support networks are there for individuals to provide support and encouragement, not to take over one's life.

Now I realize this probably sounds like a subconscious rant or scolding, but that's not my intent. Looking back through my experiences, I'm very thankful for those that helped guide me on my journey, who encouraged me to take that next step and I'm grateful that these individuals didn't enable me to give up on directing my own life.
Every struggle is an opportunity for something to change, recognize this and make every attempt to discover what changes can be made to improve the situation and you will glad for it later on. Life is many times a trial and error experience, we must adapt and change in order to stay in the game. We've evolved this way and because of it, we can do just that.

When you meet your next struggle, take a deep breath and calm yourself so that you may re-examine it through a clearer view and mind. Remember your support network and your own inner strength, this combination is very powerful to enable the adaptation and growth for survival.
And that is something to be very grateful for in life.