Ajovy Diary Days 4-11

I continue to wake up each morning feeling amazing. It’s as though Ajovy gives me the opportunity to start every day like a regular person, with a full regiment of spoons, and a clear head and heart. I definitely still experience migraine. I didn’t have a great weekend, needing to rest a lot and generally…

Ajovy Diary Day 3

7:00 am pain level: 0 10:00 am pain level: 0 1:00 pm pain level: 3 2:00 pm pain level: 4 5:00 pm pain level: 2 9:00 pm pain level: 0 I felt unbelievably good when I woke up. I slept well, no nightmares. Getting ready for work I did not feel fatigued or depressed. It…

Ajovy Diary Day 2: Halloween

1:20 pm pain level: 3. I woke up with very slight head pain, like the insidious constant headache of the past month was trying to reassert itself. It failed. I got the kids ready for school and some Tylenol / caffeine and Cherry Coke fixed me right up. The library was miserably hot today, particularly…

Ajovy Diary Day 1

Well. Aimovig was a bust. I assumed that receiving double the dose I did during the clinical trial would increase its effectiveness, but no. I thought I was seeing some improvement in the first month; second month not at all; third month I developed side effects and had near constant head pain. Fortunately, the Teva…

Aimovig.

“Aimovig.” A drug developed just for migraine disease, the very first preventative: “Aim.” “Vig” = Vigor, what we will have more of, even if improvement is only 10-20%. Generic name: erenumab. Drug company: Amgen / Novartis, who are not paying me. Side effects: possible injection site irritation and constipation. Have you looked at the side…

‘Being tested by a ruthless examiner’

I had to go to the ER last night for the first time in 3 months with the worst pain I’ve had since my hospitalization last year. You can see how red and abraded my forehead is from heating pad burns and John’s tapping technique and my literally hitting it over and over with a…

Painfully Employed

Push, pull, bend, stretch, crouch, carry, crawl. Upstairs, light filters in and the peace is something you can almost hold in your hand were it not already grasping three plastic-coated hardbacks in a basketball grip or piano finger stretch as you skim the romance section L’s. Lauren, Laurens, Laurent. Lace and Leather, Last Chance, Let…

I was inspired to do this today. “A Thank You to 21 Pilots for ‘Migraine'”

They gave us, the chronically misunderstood and underestimated, an anthem. It is nearly anonymous across the community that “Migraine” has become our theme song and rallying cry. As I listened to it again this morning with tears streaming down my face, I felt inspired to reach out and thank them for speaking their pain (I actually don’t know which of them has migraine disease or if either of them does) which helps to decrease stigma; and also for presenting us with both security blanket and super hero cape for our darkest moments.

The Chicago Neurologist & My New Job

When the call came today, I was at my theatre group’s event downtown. It was a “business after hours,” I guess normally attended by the same working folks; I didn’t know most of them. I sat with my kids and “my” kids in the corner and dealt with a freaking out Zo and had to…

PHONE CALLS 💀

I think my fear of the phone stems from both my medical PTSD and my isolation at home. The fewer people I see on a daily basis, the less I seem to know how to interact with them, especially when caught off guard (why I never answer my phone). As far as calling someone, it is…

Advocate Fail

Why couldn’t I just have arranged the whole trip on my own? Just me, wearing my big girl pants (or skirt, usually) booking a flight, knowing I could hail a cab and get to the hotel on my own? Then, after the conference, get back to the airport and fly home. That is how all the other advocates do it. WHAT IS WRONG WITH ME?

So, things are bad and scary. I still have hope.

So I do feel sort of protected by the universe. I do feel that every little thing is gonna be alright. I believe that my appointment today is going to go great, and my headache threshold will continue to stay lower, and that Dr. Dafer will agree to see me, and that when erenumab is released I will have access to it, and we either will or won’t discover the cause of the neuropathy but who cares.