Facing Forward: Elizabeth

Facing Forward is a series that shares the lives of people living with arthritis and other invisible chronic illnesses. The goal of the series is to see how we are similar and how we are different - and to remind us to keep moving forward because we aren't alone!

Name: Elizabeth

Location: NW Ohio

Diagnoses: Chronic Migraine Disease

Age at Diagnoses: 9 (Severe episodic)
Age at transition to chronic: 30

How are you currently treating your conditions?

I’m involved in my second clinical trial of CGRP antagonist preventive medications (first was Amgen, can't reveal the second company). Primary pain symptoms significantly relieved without side effects. However, still have secondary migraine symptoms of nausea, vomiting, anxiety, depression, allodynia, tinnitus, cognitive dysfunction, and facial autonomic symptoms that are frustrating to occasionally debilitating. Also: treat with acute medications. Sumatriptan tablets and injections, tizanidine, zofran, opioids for rescue, and occasional ER visits for intractable pain.

What are the biggest challenges you have faced since your diagnosis?

Striving to still have a life while being told treating every migraine attack will lead to medication overuse headache. Raising my young girls. Losing my job and gradually being well enough to work from home for migraine.com and a local online news journal I helped found. A relationship with my partner and caregiver. Facing each day. Managing to stay positive through very difficult conditions and transitions.

What are your favorite tips and tricks for managing everyday tasks?

Sleep when needed, whenever that may be. Eating lightly and often and staying hydrated. Using mentholated Salonpas patches on my forehead, and oddly, Highland's homepathic "Migraine" dissolvable tablets (ordered on internet). Not pushing myself but also not giving up what is important to me, like being part of my daughters' dance and theatre productions.

How do you manage to keep facing forward every day?

I keep facing forward because the alternative is unthinkable. I want my daughters to see strength despite adversity. And I must always hang on to hope that things will get better. The CGRP trials certainly help with that.

If you could go back to diagnosis day and tell your past self one thing, what would it be?

I wish I could tell my child and teen self that yes, you will face a life of hardship due to this disease, but you will not be alone. Doctors may mistreat you, teachers may disbelieve you, but don't give up. Help will be coming in more ways than you can possibly know.

Do you have a blog you would like to share?

I blog at ladymigraine.com and have a beautiful graphic novel created with my partner about family life with chronic migraine at migraine365.com. I also am a patient advocate and moderator at migraine.com.