Friday, November 25, 2016

Facing Forward: Kami

Facing Forward is a series that shares the lives of people living with arthritis and other invisible chronic illnesses. The goal of the series is to see how we are similar and how we are different - and to remind us to keep moving forward because we aren't alone!

Name: Kami 
Location: Oregon
Diagnoses: Chronic Lyme Disease, POTS, Chronic Fatigue Syndrome, Mold Illness, MTHFR Gene Mutation
Age at Diagnosis: 27

How are you currently treating your condition?

Lyme disease has a multitude of treatment options due to it's complexity and how differently each patient can respond to treatment. I am currently following an all-natural treatment protocol under the supervision of my Lyme specialist. In addition to my Lyme treatment I am treating mold illness and supporting my body's MTHFR gene mutation. Part of how I support my current treatment is through regular detox routines, eating a very low carb diet, and doing what I can to listen to my body's signals for rest.
What are the biggest challenges you have faced since your diagnosis?

I think the biggest challenges for me have been navigating the responses from people on the outside. How doctors, friends and family view my illness, believe my symptoms and the ways they are willing (or not willing) to support and connect with me. It's definitely been a learning experience, figuring out how to balance caring for my body and maintaining relationships when my life has been so completely transformed by chronic illness.

What are your favorite tips and tricks for managing everyday tasks?

The word I find myself coming back to time and again is balance. It is so easy to push ourselves to our breaking point simply by trying to stay on top of our treatment schedule alone! One of the things I've been trying to implement more this year is setting timers, alarms, reminders for anything I need help prioritizing. Whether it be rest, blog work, treatment, detox practices, or self-care I am finding that this is a helpful tool for curbing my tendency to over-do it!

How do you manage to keep facing forward every day?

My view on this may not be popular opinion, but it has been vital to my ability to face each day of illness. I think we can place so much pressure on ourselves to always "stay positive", overlooking the very need of (and health found in) allowing ourselves to process the hard. In giving myself the space to feel the natural emotions that come with sickness and in talking with others who understand this life as well as a good counselor, I'm able to embrace healing and comfort along this difficult path. It also helps me to further connect with my readers and hopefully encourage them to find their own healthy balance in order to face each one of their difficult days.

If you could go back to diagnosis day and tell your past self one thing, what would it be? 

If I could go back, I would most likely be going back to my original misdiagnosis of Multiple Sclerosis. I would encourage myself to do more research, to read other stories of people who were diagnosed with MS as I'm sure I would have come across someone who, like me - was actually fighting Lyme disease all along. I would remind myself that I know my body better than any doctor or outside source, that my health is my priority and therefore if I have concerns or questions it is my responsibility to keep searching for answers. I totally understand why I trusted my original doctor. We have been taught to put our trust in them, to expect them to know exactly what is going on. However after being diagnosed with and treating Lyme disease, I know that it's frequently misdiagnosed and vastly misunderstood by the medical community. Doctors are an amazing resource and can be so helpful - but we will always have more of a vested interest in our health and care.
Do you have a blog you would like to share?

I currently blog over at Living Grace about living with chronic illness and all the things that intersect with this life: marriage & relationships, self care, treatment and detox, grief and community. If you'd like to connect more you can find me there!

You can also find me on:

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1 comment:

Valerie said...

I appreciate Kami so much! She has been a huge encouragement to me since I found out that I have Lyme. Great interview. =)