I reject your judgement

This is a story of an incident of a paradigm shift. This is a story of the shame I carry as a chronically ill person. I live in fear of judgment based on my experiences, both as a nurse and as a patient. This story is very important to me and it is 100% factual. But as I was about to publish, I found I couldn’t go through with it. Too much stigma associated with the labels, the words. And so I’ve retracted the names. I don’t know how I feel about my decision. So much shaming. So much stigma.
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Costant reminder…

…you’re Alone. Normal people around you don’t get it, have never experienced anything like it, have small minds & piss poor empathy skills. There’s really no one you can trust. 
“Just put your head down, eat your pizza, and keep walking.” (Advice from a New Yorker on walking through Manhattan)

#BotoxBabes for Chronic Migraine

Botox treatment, 31-36 injections in my forehead, sides of head, back of head, neck and jaw every 3 months, has been the most successful migraine preventative I have ever been on. It reduces my migraine’s legths and severity and makes them easier to treat with medication. I estimate it improves my quality of life by 40%. When Botox is “running out” in my head by week 8-10, I usually have a significant worsening of migraines. Some rounds of treatment are better than others. But I feel I would be lost without the therapy. It is performed by my neurologist (not ever a cosmetic procedure) and is not the first line of preventative treatment for Chronic Migraine. Usually one cannot get insuramce approval for Botox without first failing multiple oral preventative medications.

💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉

My week…

Saturday show…

Black & white #1 Saturday…

…not without Marc’s help…

Oh, my head…

Black & white #2 Sunday…

Working…

Hurting…

Black & white #3 Monday…

Stupid Daylight Savings

Working…

Black & white #4 Tuesday…

Bonnie’s surgery…14 teeth removed… My poor girl.

Working…

Wednesday, EMDR

#WaitingRoomShoePic

Costco hell…

Colder weather… Making tortellini soup…

Black & white #5…

Thursday, acupuncture…

Black & white #6…

Black & white #7…

Feeling good enough after my massage, I got Nick and Robyn milkshakes and picked them up from school…

And then home for migraine…

Relentless

Life continues in Chronic Illness Land. The weather has been ridiculous…hot or high humidity, vacillating all over. October wasn’t much fun. November is finally organizing itself…cooler temps and less humidity. It’s been a drizzly rain and day three of migraine.

Last week I started acupuncture again. Met with Gayle, “a doctor of Chi.” She took a thorough intake. And was impressed with my EMDR integrated therapy for Chronic Migraine. She seemed to think acupuncture and EMDR would work well together – better than medication and acupuncture. 

It has been years since I last did acupuncture. Six months in Tucson… Maybe ~2011. Gayle placed needles all over me and left me in the room for my energy cycle thing. I told her I had a small migraine in my right frontal. The first few needles in my head overwhelmed me and I started to cry. I’m so susceptible to any energy therapy. It’s my shtick. 

As I lay there, I could feel the migraine pain slipping from the right spot in my frontal lobe…slipping into my right side…leaking into my right ear like a toxic liquid. At the same time, I could feel my lumbar pain dissipating…slipping square into my right sciatic nerve…my piriformis, down my leg, even into my calf. 

When the needles came out, I felt ok for a bit but it developed into a migraine day anyway.

The next day was a medical massage with Lisa. I went in and out of consciousness thru that. She works me very hard. But I don’t know how I’d survive without it.

This weekend has been hard on my head. I’m back to tracking migraines and my Sacroiliac for my new disability lawyer Adam and for Shanna EMDR. They’re both interested, where my docs have not been. On day three I start to lose my shit. It’s so much. It’s relentless. It’s confirming. It’s ridiculous.

While Marc took the kids to a Game-a-thon at Cirrus Saturday, I pulled myself together for a date with Kenneth Branagh and made it to Cinemark to see Murder on the Orient Express. It was so great. 

But now it’s Sunday and I’ve been in bed all day. Trying to be productive with anything I can do here.

The uninvited guest that refuses to leave


Date: 11/5/17

Migraine Trigger: weather changes, 80+% humidity

Symptoms: right-sided brain pain, photophobia, lethargy, mild nausea, brain fog, poor coordination, difficulty thinking, aphasia, depression, hopelessness

Treatment: mediation, bed rest, ice, darkness





My husband just came in to talk about dinner ideas. I said I didn’t care. He asked me what was wrong, was my head “bothering me.”

Bothering me? Bothering me?

Bothering me.