Living and Learning

** I am not sure where the months have gone. The year started off rocky with 2 weeks in bed fatigued, February had its own adventure, March flew by, and April brought new light in midst of the same long covid journey.  I wanted to share a little update where things are before I dive in with other topics roaming around in my Spirit

11 months in with Long Covid!  Who would have thought?  I continue to ebb and flow with the neurological symptoms. I can function at a stable level and then by doing a little too much I push the brains' ability to function. The dizziness starts and then the brain begins to not be able to calculate and make decisions.  I then shut down and find the comfort of my bed to recharge.  Folks ask me what helps. I would say RESTing in bed is the best. I carry on dancing with medical appointments, more tests, and adjusting supplements. I do believe the supplements and GF diet make a difference offering stable energy.  My appetite is still challenged as it comes and goes along with the crashes.  I eat and cook when the brain is able and then surrender when I am not.   I continue to be hopeful with the Non – Invasive Brain Stimulation known as TMS – Transcranial Magnetic Stimulation.  The EEG I had in late March sealed the deal that all the symptoms I am experiencing derive from the brain.  My physician described my brain as looking like someone with a traumatic brain injury. The parts of the brain are not lined up properly causing disconnection, cognition slows down as one looks at the back of the brain to the front. Parts of the brain are functioning really poorly causing the challenges I face with now- tremors (at times), no appetite, memory and word finding to name a few.  I am counting down to this treatment option - living with hope it will reconnect my brain.

Professionally, I officially resigned from my hospital chaplain position as I am not able to function for the high impact cognitive abilities that come along with the nonstop pace of chaplaincy.  An opportunity did come to me just as everything else in this journey - I was encouraged to apply and was offered a position at my kids' school as the Parent Community Network Coordinator (PCNC). This position offers a flexible schedule of 17 hours a week. I began this new position a few weeks ago. Most of all I enjoy being around my kids.  My role is facilitating support as a liaison between the PTSA, community and the school. I coordinate a newsletter, family events, and other creative ideas.  Carrying on with Rotary and other boards have encouraged me that I have the ability to do this work on a casual basis. At least, I hope! At this point all I can do is try!  There is grief around this transition, but it is what it is. And so, I continue to use my labyrinth as a tool in letting go of the pre covid self and welcome the self that is emerging from this LC journey.

Motherhood continues to be challenging at times as kids are high energy. High energy equals challenging my brain function. I have learned how to connect with my kids depending where I am on the spectrum of cognitive abilities. Covid crashes come and go depending how much I do so it is a game of living and learning. I yearn to take a walk with them again someday without the crash that happens after. Currently, I avoid long walks as I have experienced the backlash and it is not worth it. It has been all about adapting my lifestyle.

I organized a Long Covid Support Group that kicked off on March 15th - Long Covid Awareness Day. The group meets on Wednesday mornings 8:30 am - 9:30 am via zoom. For the zoom link one can email longcovidmaui@gmail.com  In my reading of articles and threads on twitter it supports the need for folks living with long covid to find connection with at least one person or more. There is something about having walked in the shoes of another that brings healing to the heart in the midst of the unknown healing of long covid. This group is not for counseling but a place to share and listen of one's experiences and resources of their long covid experience. Where this will go I have no idea.  Feel free to share this group with anyone you know who is suffering with long covid.  Since it is on zoom it is open to anyone on any island, the mainland or international. I appreciate my rotary club for giving service to this start up group by using the Wailuku Rotary Club Zoom account. More on long covid support group in a future post.

I am grateful for my long covid team: My family and friends, my Primary Care Physician (Dr. Sampson), Functional Medicine Physician (Dr. Eri Shimizu), Brain Health Hawaii (Psychiatrists on Oahu), Spiritual Director, and my therapist. Other specialties get involved as diagnostic referrals are made. I would not be where I am today without this team!!