Pinterest: Me: Autoimmune Life board


Body encouragement and journaling

i have been finding that activating my right brain is helping me process pain, tolerate all the waiting for treatment and relief, and generally keep myself calm. So I am doodling a lot in my planner, and art journaling my autoimmune journey.

Example (with more to come): I am journaling my pain and nutrition tracking today, and drew and lettered 1 Corinithians 6:19-20–

The Ultimate Nap Encouragement, Guilt-Busting Post

Naps are crucial to overcome the brain fog, vertigo, and fatigue of autoimmune disorders. As I’ve stated before, we need to redefine fatigue.

Plus, my wonderful sleep doctor (shoutout to Dr. Winter!) told me to listen to my body, and respond appropriately. Is what I am feeling fatigue? Nap like a boss. Am I simply sleepy, afflicted with normal, everyday/everybody tiredness? Practice good sleep hygiene, and try to hold off until bedtime.23c7bb6dca5afbbb5c3afd3a93e9c0d1

And so I am gathering all of my guilt-smashing, nap-encouraging pins into one place. Hope they help you as much as they have helped me.

4d474a9633a93d772de89663f23d10e4You know how many spoons you have left. Store up spoons with napping if you need to, and don’t let anyone tell you differently.   df9cd88211719a439be7aa8c941a8b1c
5503e29bb753817a887eb41b057be3c2 9400b8a95383651b32c1850e148c82c650203acd156b50c971ce82608673f864


d07623ad11d0c1d0d9a589be1e90e46d da4b0d665683a59bf0a8313398fefc41  f718907e4c313c89faa639c00a465a15SARK_Nap_Craft_800x600 Now, if you will excuse me, I am going to go revise my to-do list for today, and then take a short nap. Really. I do take my own advice. 🙂


official site Fandango for tickets and locations IMDb entry watch the trailer NPR interview: ‘I Was So Grateful For My Body’: Jennifer Aniston on Portraying Chronic Pain Thank you, Jennifer Aniston. Much love, more than I can express:

I wrote on my Facebook the same day as the above tweet: I just saw a snippet of Cake, Jennifer Aniston’s new movie about chronic pain. Her character walked through the pharmacy–and she walked just like I do on a bad day! Just seeing my pain depicted so accurately in her careful but disjointed gait brought tears to my eyes.

Update: it just keeps gets more complicated…

So, I left work in an ambulance August 13, 2014, due to chest pains and accelerated heart rate and blood pressure….and, although I didn’t realize it at the time, my old life ended.


Countless doctor appointments–PCP, new rheumatologist, spine doctor, physiatrist–followed by a horrifying medical test involving needles and electrical shocks, and several sessions of physical rehab.
I was not able to return to work, and finally, in mid-December, my workplace was no longer able to hold my position for me.

…and I gained two new diagnoses:

Erhles-Danlos Syndrome, Hypermobility Type

I am still learning about this new me, who I am. If I can’t work, who am I?

Current schedule, Advent-style

Advent is supposed to be fullness in waiting and quiet…I’ve had my waiting time throughout summer and autumn, and here we go (finally):

Completely stopped taking Plaquenil on November 15 –right now, the only autoimmune drug I take is Meloxicam, an NSAID. as you would expects, symptoms are through the roof and riding the crazy train. Yes, they are severe enough for me to mix metaphors.

Schedule for December, 2014:

Physical therapy for degenerative arthritis in back December 3
PT December 4 (plus mega vitamin D dosage)
Therapeutic massage December 5

PT December 8
EMG nerve test for unhealed carpal tunnel December 9 (I understand this is reallllly painful.)
PT December 10
Follow up for nerve test December 11 (plus mega vitamin D dosage)
Follow up with PCP December 12

Follow up post PT, post EMG, and post stopping Plaquenil and sulfazine with rheumatologist December 18 (plus mega vitamin D dosage)
Follow up with sleep doctor to recalibrate CPAP settings December 22

PT December 24 🎄
mega vitamin D dosage December 25 🎁

PT December 29
PT December 31

Ending the year with a bang, hopefully a productive bang.