When Major Grief and Autoimmune Disease Collide

Sjogrenslife – Grief and Autoimmune Disease Collide

I am so relieved that it is 2017!  I am happy to say that I am feeling my usual self today. But it was hard work getting back to emotional and physical status quo — because the last four months of 2016 was absolute shit!

This blog post is about how the emotional stress of a major life event collided with my Sjögrens, caused a major Autoimmune Disease relapse, and what tools I used to pull myself back up to my usual state of normal. I also, now, have a game plan for the next major life event!

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Sjögrens Fatigue – an Autoimmune Conundrum!

Sjogrenslife - Sjogrens and Autoimmune Fatigue

My friend Sarah Schafer, a Sjögrens patient and an MD, wrote a message on the Sjögrens List Serve that I thought should reach a wider audience. Her thoughts on autoimmune fatigue are valuable and her personal experience with fatigue echo the experiences of so many Sjögrens warriors!  I also have fatigue and mostly give up social activities in the evening so that I can work most of the day (not a quality-of-life choice I like). So I think I will look more closely at these tips from Sarah…

Sjögrens fatigue – and all autoimmune fatigue – is a clinical conundrum.  No one really knows the cause, although there is some interesting research being done by a neuroscientist in Alabama who may shed some light on the underlying cause soon.

Fatigue is unrelated to blood tests  (e.g.- sed rate, SS-A) etc, or even severe organ system involvement. The study I posted recently  (article titled, “Fatigue in Sjögrens: A Paradoxical Response. Decreased pro-inflammatory cytokine levels tied to higher levels of fatigue”, by researcher Wan-Fai Ng from the UK) showed a surprising inverse correlation with fatigue and some inflammatory chemical levels in the blood. This is  the opposite of what you would expect, which goes to show, we really don’t know. Fatigue is a prominent symptom in Sjögrens (70% disabling) and other autoimmune diseases.

Fatigue is my worst symptom. It is what most keeps me from having a better quality of life, despite many other serious symptoms.  

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Shame on My Dirty Mouth! Yep, #ThisIsSjögrens!

Sjogrenslife - #ThisisSjogrens

I spend a lot of time trying to learn best practices for caring for my Sjögrens so that I can live well today and prevent as many medical issues as I can in the future. In fact, I would say that I’m very well-educated in product options, tips and medications. This doesn’t mean that I always practice perfect self-care discipline, but I certainly know what I should be doing.

Oral healthcare has not been an area where I have been lax! I use my Sonicare toothbrush, xylitol toothpaste and mouthwash, prescription fluoride toothpaste (and leave it on), and I use MI paste (calcium phosphate creme). I take Evoxac. I see my dentist three times per year and I brush after meals. And of course, I have xylitol mints throughout the day.

I have had one cavity the past twenty years…until now. I was horrified when my new dentist said:

“You have fourteen cavities that we need to fill, and the sooner the better!”

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Tips to Move Through Autoimmune Stages

SjogrensLife.com and Autoimmune Stages

This is the final post to recreate my keynote speech delivered at the 2016 Sjögren’s Syndrome Foundation National Patient Conference April 8th and 9th in Seattle.

One of the most difficult challenges to face when living with an autoimmune disease is knowing that you can’t necessarily perform at the peak of your potential. This thought is not only a major blow just after diagnosis (and part of the initial grieving process), but continues to rear it’s head as your disease level changes over time .

This was the key challenge that inspired me to create the Autoimmune Grief and Life Stages and design a program to help me adjust in a healthy manner. I knew that if I wanted to work (and live) at the highest level of my capabilities, I needed to know the parameters of my capabilities. These parameters can change without much notice (depending on my disease level, emotional stage, or the required commitment level of the opportunity) and paying attention to my Sjogrens history helps me know how to create my future.

As I’ve stated in earlier posts, I try to be very mindful about the emotional and physical stage I’m in, and then utilize tools to help me get to a better stage. I call this being on the Road to Reinvention, and I’m getting pretty good at it!

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How to Define Your Autoimmune Stage Clearly

SjogrensLife _Where Am I?

This is the third blog post to recreate my keynote speech given at the 2016 Sjögren’s Syndrome Foundation National Patient Conference April 8th and 9th in Seattle. You may want to read previous posts about the speech: Relapse to Reinvention and 10 Stages of Autoimmune Grief and Life. This post is intended to help you Define Your Autoimmune Stage Clearly.

If you are reading this article, you are probably living with an autoimmune disease or you love someone who does. One of the most important aspects of living well (or as well as you possibly can) when you have a chronic illness is to be very honest and very mindful with yourself. It’s the only way that I’ve found to be effective at managing the disease, avoiding as many relapses as possible, and living a fulfilling life.

I love the word “mindfulness”. In general, it means the honest recognition and acceptance of current thoughts and feelings with the goal of reaching a place of greater good. For autoimmune people, we also need to add being mindful about the past: what causes relapses, what helps us feel better, where do we get stuck, etc. There is much research on mindfulness and how to apply it as a meditative, psychological, or (even) business practice, but I am using the term more generally. I try and practice mindfulness so I can accurately recognize my autoimmune stage and either grow to a better state or maintain the great state I’m currently experiencing. Mindfulness may be the best tool to help define your autoimmune stage accurately.

As a person living with Sjögrens, mindfulness is a critical practice because I need to measure changes by inches — not miles — in order to define my autoimmune disease stage clearly and live as well as I possibly can. And this is where it can be challenging, especially for people who have not been managing their disease for very long.

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