Saturday, July 27, 2019


Prayers are answered. Yesterday I learned from the neuromuscular experts at UW that I no longer need to be concerned about neuromuscular disease.  What a relief!  This includes LEMS, and it means that I can come off the firdapse immediately.  That's one less medicine (HOORAY) and one less avenue of diagnosis.  Whether it was an entire year of high dose IVIG that did it,  who knows?!  I'm grateful. Thank you God.

The Doctor identified something wonky with my eyes yesterday,  so I have to follow up on that.... but that's small compared to the other issues that have been on the table.

Although I still have other health stuff to deal with, including a still undiagnosed inflammatory something, I'm beginning to see things heading in a new direction of healing.  Im having much less breakthrough pain and im able to move around more without crashing.  That said,  my pace is slow.  I get very tired very easily.   The nausea and body pain are my reminders when ive done a little too much.   If I really over do it, then it's usually an attack of some kind... so I will keep everything "country slow" as I make the adjustments that my doctors ask of me.  My stress level will remain as low as possible, therefore no school for now. Painting, mothering, spending time with my animals, REHAB with Harvey... this is my life as I heal.  Slow and very steady. 

As I surrender to God. Not my will but thine.

Thursday, July 25, 2019

Im Not Looking Back...

... that's not the way to going!

It's been almost exactly 2 years (2017) since the machete pain suddenly hit my back.  3 years since I lost my hearing (2016), was placed on prednisone for the first time and discovered I had adrenal Insufficiency. 4 years since the CDIFF superbug landed me in the hospital (2015) followed by a microbiome transplant at Harborview that cured me,  but changed my body forever. 6 years since the divorce was final (2013).  Nearly 8 years since the TBI that changed everything (2011), and the day I learned my husband didn't love me anymore.  Almost 11 years since the life threatening birth of my daughter (2008)...

I could go on but I won't. It's been a decade of learning!

And after all of this,  today I came to an important awareness, which I will share.

Im whole exactly as I am.
Im not trying to get back to something I was before this latest fiasco with my health. 
Im moving forward into the unknown of healing.
May God lead the way.
Not my will, but thine.

Sunday, July 21, 2019


Humanize the OTHER

In this election season, many are surrounded by like minded individuals, steeped in likeminded commentary, fed news by likeminded outlets.  Ive heard the rhetoric on both sides grow progressively more polarized since the last election, even describing the other as evil.  Dehumanizing others is dangerous, no matter how despicable we find their views and actions. Ive returned to reading lessons from Etty Hillesum to remind myself of LOVE even in the most hateful circumstances.

In my spiritual tradition, Jesus prayed for those that tortured and murdered him.  This is not a lesson to be taken lightly.  This is a reminder of just how deeply we are called to LOVE in Christianity.

I am now asking questions, including the source of my information.  Where am I learning about what the other side is saying?  What would it look like to actually discuss opposing views, human to human, with someone with whom I disagree?  Finally, as community is replaced by online forums and large hives of people with similar views, where's the every day communal interaction that pulls us to the center?

Monday, July 15, 2019

Kindness on Social Media

My daughter and I were discussing social media and why we're holding off on it for her...We discussed the way that kids can be mean to one another on the internet. We also discussed that it's easy to feel left out when kids are posting about their outings and parties, and you weren't invited. Sadly, even with my very tight friend list, I was able to show her examples in my adult world- moments where mean things were said and times when I felt left out.  Even if I can't go to things because I'm sick,  gosh it's nice to be invited!

Empathy.  Compassion.  Awareness of others.  Think before speaking/posting. Consideration.  Im not perfect. That said, Im contemplating digital citizenry, because our online world creates distance while making us feel artificially connected.  As we become more distanced from one another, we run the risk of dehumanizing the other as OTHER.   Kids and adults together.... we must do better.

Tuesday, July 9, 2019

Connectedness - Etty Hillesum

Etty Hillesum was a contemporary mystic who died in a Nazi Concentration camp. At the end of her life, she wrote about the connectedness of all things... I believe her insight is timely, as we become even more polarized.  We need to learn to see our connection before fighting over our differences.

"Through me course wide rivers and in me rise tall mountains. And beyond the tickets of my agitation and confusion there stretch the wide plains of my peace and surrender. All landscapes are within me. And there is room for everything. The earth is in me, and the sky. And I well know that something like hell can also be in one, although I no longer experience it in myself, but I can still feel it in others with great intensity. And that is as it should be, or else I might grow too complacent." (Page 156).

Monday, July 8, 2019

FAT - Removing the Shame

This weekend I was challenged (again) to remove the negative power and cultural shame of the word FAT.  Just as I've done with other words that used to raise deep fears of abandonment, the word FAT comes with huge judgments and socially acceptable discrimination hidden beneath the auspices of concern for what's healthy.   Unfortunately, one only has to look at those that lose weight due to chronic illness (people look great!) compared to those that gain weight due to illness or treatments like steroids (silent uncomfortable stares, gossip, and unhelpful physician commentary). 

So im working on this right now.  Im learning to take the power out of the word FAT.  This is another layer of healing from anorexia, exercise bulimia and orthorexia.  No more justifying my body, whether larger or smaller.  No more determining wellness by what the scale says.  Im just loving my body as she is.  And this next level of healing is badass.

Wednesday, July 3, 2019

Finding a Deeper Love of Self

Many don't realize how before and after photos could hurt those living with disability or chronic illness.   Perhaps they don't see the inherent privalege associated with being able to do something about their image or weight, because their body has the ability to move,  exercise, take in food properly,  etc. Being able bodied is truly a gift.

It's hard to explain to people what it's like to NOT have the above options for the first time in my life, and to walk alongside many who are also struggling with such basic things as eating.

Generally I don't mind the side by side posts, as i want to celebrate the success of others!  But ive noticed an increased number of side by side pics that say "This is what health looks like. This is what self care looks like.  This is what self love looks like. " In other words, losing weight is what self care,  self love and health looks like.  

This is the assumption that must be challenged.   I was not healthy as an anorexic, even if all the men in my life thought I was "HOT AF" when I was 100 pounds.  Im not healthy now because of multiple chronic illnesses, not because of weight.  In fact, my doctor (Chief of Metabolic and Bariatric Medicine) has instructed me to stop focusing on my weight because it's causing harm to my body.   In other words, my weight is out of my control as my injured hypothalamus has a temper tantrum.  Furthermore, losing weight can cause harm right now, as I'm in the final stages of diagnosis for a very rare disease where weight loss and low carbs can cause excruciatingly dangerous acute attacks.

So when you can't change the external appearance because you're not able bodied, the time comes to find self love and acceptance in a much deeper space. 

Loving myself as I am in the midst of illness, with total loss of control,  has been among the most challenging and badass things I've ever had to do.  That said, it's the journey I'm on toward healing, and I continue to walk it one day at a time.