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. 

5 Steps to Take When Coping with Grief and Chronic Illness

This is a Guest Post by Elise

There are good days and there are bad days when dealing with a chronic illness. The fact is that you just don't know what will happen tomorrow, or even an hour from now. But, having a chronic illness or losing a friend to one does not mean there is nothing you can do to manage the pain and grief. "Manage" is the key word. How do you manage your grief?

What is Grief?

Grief is a natural emotional response to loss, brought on by loss. Small or significant, it is okay to grieve and for most people the more significant the loss the more intense your grief. How you grieve and how long is up to who you are. Factors such as your personality, life experiences, faith and your coping mechanisms all play a role.

How to Cope with Grief

Coping with grief can be difficult, so here are five first steps to take when you have a chronic illness or are dealing with the loss of a friend who you've lost from a chronic illness.

• Express your Feelings

If you don't express your feelings, you are bottling those feelings in and possibly doing yourself an injustice. This doesn't mean you need to cry on the shoulder of a stranger when sad or yell at your colleagues when angry, but, it is okay to tell a friend, family member, or coworker ho you are feeling, that you need the comfort of someone near you, or to be left alone for some time.

• Take Care of Your Health

Turning away from your health could mean no longer exercising, eating poorly, or losing routine in your life. Both physical and mental health can be at risk during your grieving process, so taking time to focus on your health is important. One way to start is by creating a nighttime routine such as a bath or shower, prepping your clothes for the next day and reading a book to fall asleep. Adding small things such as essential oils, calming music or even adding breathing and meditation to your routine are great ways to relax your body and mind.

• Understand the Inevitability of Bad Days

Bad days are going to happen. You may wake from a restless night, be plagued with difficult thoughts, or you're just having a bad day. All of these are legitimate, and when grieving you will inevitably have difficult days. Understanding that these days will occur will not make your grief fall to the wayside, but you will know that tomorrow may be better.

• Don't Forget - Moving on Doesn't Mean You Must Forget

A common myth about grief is that if you try to move on you must forget. If you lost a friend, it means you should put thoughts of that friend aside. If you are coping with a chronic illness this might mean you should forget the good times before your illness. This simply is not true. There is room in us to both manage the grief as well as remember our loss.

• Seek out Support

Support groups, therapy and confiding in someone you trust are not easy to do for many people. When you grieve these can be even more difficult. However, knowing that support is available to you is important. Understanding that you are not the only one (often the case when grieving) can be encouraging and help you cope with your emotions and pain.

Grief will affect everyone at some point in their life, but when dealing with a chronic disease, yours or that of a loved one, your grief can take longer to manage. However, it is important to know that there are coping solutions to help you keep yourself moving forward.

Elise is a freelance writer located in North Carolina that regularly covers health and wellness topics for Mattress Advisor. She is especially passionate about understanding and researching mental health and loves to educate others on the topic through her writing.