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.

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.

You know how many spoons you have left. Store up spoons with napping if you need to, and don’t let anyone tell you differently.   

   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. 🙂

Rest

Cake

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:

Jennifer Aniston & @AnnaKendrick47 thank you for #Cake, for using your art to show people what (my) life with chronic pain is like. Love. — Carla Hufstedler (@carlahaunted) January 25, 2015

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.

Pinterest

Pinterest: Me: Autoimmune Life board

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.

August-December:

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:

Fibromyalgia
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.

Rest Ministries

52 Ways to Encourage a Chronically Ill Friend

Pretty soul

Autoimmune disorder distorts my femininity.

Excessive sweating, both as a stand-alone symptom and as a side-effect of regular fevers
Thinning hair, slow-growing hair
Ridged and grooved fingernails
Swollen hands and face, grossly enlarged knuckles
Distortion of fingers and toes

I don’t have enough spoons to keep ahead of the skincare, the nailcare. I don’t have the hand or wrist strength to brush and groom my hair.

It’s hard to remember I am beautiful when my clothes are damp and my hair remains on my pillow. I must try. I just remember.

I miss…

Since my cardiac event in August (which appears to be an averted stroke), I have not resumed normal life. I do not regret taking this time to seek new treatments and reevaluate the severity level of my health. However, the changing of the seasons is quite poignant for me, as I have mostly just watched it from windows. When I left work in an ambulance, my world was Dunn, filled with heat and humidity. Now, the air is chilly, and the leaves skitter past my window. In those two months, I have missed so many normal activities.

I miss driving.
I miss going for walks. I adore autumn on our mountain, I would have tromped down the slope to the river several times by now.
I miss the river.

I miss knitting.

I miss browsing in bookstores, reading in cafes.
I miss reading physical books–my hands cannot support the binding and pages of a book right now.

I miss taking to my coworkers, to strangers, to cashiers and clients, to friends.
I miss the essence of work, which is the daily experience of being necessary and needed.

I miss independence, of any small sort–just to think that I would like a book or sweater from downstairs, and to respond by rising from my chair or bed, on my good, strong limbs, and retrieving the desired object myself.
I miss brushing my own hair.

Think of that–of me–the next time you brush your hair. How easy the desire to do so is followed by the vigorous and refreshing action. My hands have trouble gripping the brush. My arms are weak, and pain shoots down them if I try to raise my hands in the repeated strokes of brushing. My mind is nimble still, but my fingers are not, and cannot manage a simple braid or ponytail. Think of that simple desire to groom your hair, and then think of being completely blocked in fulfilling that desire by the weaknesses, stiffness, and pain in your very bones.

I’m only 42 years old.

I miss me.