Photophobia: Living Life in the Shadows |

Photophobia is a constant with me since becoming Chronic in 2007ish. It doesn’t matter if I’m migraining or not… it’s always there. It feels like a dull pain or irritation in my eyes or a terrible stinging. Most sunglasses are ok for outside (and I have them stashed EVERYWHERE – like lip balm). For inside and hazy days, I have indoor Axon Optics which are special migraine sunglasses with a rosy tint. At night, I need HD yellow tinted glasses for driving as the oncoming headlights and any night lighting is too intense. Most indoor lights are ok for me bare-faced. 😎 I haven’t opened my bedroom blinds in 4 years. Very sad. Thankfully my dear husband is fine with that. ❤

Three Reasons for the Stigma of Migraine |

How often is the person with mild migraine dismissive of the one who has it much worse? How often has someone with severe, life altering migraine, heard a version of: “I don’t understand, when I have migraine and I take 2 excedrin and an espresso, and I’m fine?” This is outrageous. Imagine the person who had a lumpectomy, no radiation, or chemo, and was cured telling the woman with metastatic breast cancer in her bones and liver that “breast cancer isn’t so bad.”

But to the ones who know them very well — they know! An observant husband might tell a wife: “you’re a six (out of ten) aren’t you?” And they are probably right. Sometimes the loved one will know there is a headache, even before the patient has registered it for themselves. But for the rest of the world, it is hard to empathize with a thing they can’t see.

READ THIS: Five Things I Wish I’d Known Before My Chronic Illness – The New York Times

When I was diagnosed, I didn’t know how much my life would change. There’s no conversation about that foggy space between the common cold and terminal cancer, where illness won’t go away but won’t kill you, so none of us know what “chronic illness” means until we’re thrown into being sick forever.

But most of all, your relationship with yourself changes. You grieve a version of yourself that doesn’t exist anymore, and a future version that looks different than you’d planned

Talk about it. And then talk some more. It’s real and it has no place, no conversation, no rationalization in our world – until we finally make one for it. Someday. You can’t just rest it a day and recover or shake it off and hop back into your life. You can’t exercise and change your diet OUT of it. It never ends and likely won’t kill you, but you will think about dying from sheer grief and guilt. Chances are you know someone who is battling Chronic something …and trying to make and live a semblance of a life. It sometimes takes years to accept what is happening – your body is betraying itself, despite kale and essential oils and Himalayan salt. In the analogy inspired by a friend: it is a bitter pill to swallow, where once I was a sexy/sleek Dodge Charger, now I’m a beaten up Ford Pinto.😕 (But I don’t wanna NOT be a Charger!! Wah! If will alone could heal me…)
If you ever need support, education, understanding …I’m here for you.

With love and no judgment,


A word about God

I speak to my mom about twice a month – maybe less. When we discuss my Chronic Migraine, she is keen to tell me she prays for me every night – she and my dad together. She’s said: “I storm Heaven for your healing! I pray so hard, and I don’t understand how you can suffer so much.”

Even though I’ve heard this many times, it still catches me off-guard. I imagine her stumbling up to a Divine gate on a sunset cloud, banging her hands bloody and screaming to be heard.

Of course the idea that anyone, anywhere actually pray for me and my healing, is overwhelming. It staggers me; the sheer selflessness, kindness, charity, and generosity. Moves me to tears of humbling and gratitude.

But I can’t wrap my head around demanding anything from God. I can’t see it that way. My struggle is minute compared to struggles, my pain and suffering are infinitesimal. And I would never, could never demand anything from a benevolent, loving and merciful God.

I once heard a minister describe people of my faith and persuasion as “not religious, but very spiritual” and it was as if a light went off: Yes! That’s me! Wholly spiritual, completely trusting in our loving father God, but woefully remiss in scripture knowledge and almost always absent from Sunday church service. But my Faith is steely and complete. When I close my eyes and fall backwards, I know with all my heart that God will catch me.

I’ve been alive 46 years, have faced hardships, betrayals by my body, betrayals by friends and family. I’ve suffered loss and watched my loved ones, soul mate and my greatest treasures – my children – face difficult and painful trials. And I have prayed, I do pray …to my God and our angels …but I have never once felt the need to storm Heaven for anything.

Storming Heaven? What does that say about our trust and Faith in God? Why would I ever demand that I know better than God? I know the right path, I know what trials should be eradicated?

I believe in a plan. I believe in suffering. I believe in something bigger than myself. I want my children to have fret-free and long and happy lives, but only a fool thinks that’s a right (because of a parent’s prayers). My children are God’s gift to me …precious and perfect Gifts. I do not get to keep them forever …I only have the enormous privilege to help raise them for a finite time. A privilege to watch the magnificence as they grow into their own people. I don’t want them to suffer or hurt. But if that should be in their path, I will do all I can to help them …but I can’t fathom that includes storming Heaven. Never. God is merciful, God is a comfort. When I’ve been in the throes of my worst pain, I could feel Him nearest. If I could give that gift to my children, it would be the greatest treasure.

When I was 25, Marc and I suffered a devastating loss of our first baby. As I miscarried at 11 weeks, I watched helplessly in horror as my body betrayed my heart and purged our baby. I mourned and grieved and even screamed in my heart’s pain. I think I might have asked why. In the weeks to follow when I grieved and recovered, I began to understand: the next couple of years, I would have 13 friends miscarry pregnancies. And I knew with every fiber why I had had my loss. I was there for every woman, every couple who would lose their baby …I could reach out and hold them with more than understanding, with unspoken union and presence.

And I know without a shadow of doubt the why I struggle with Chronic Migraine. If not me, then who? I will be there for others. Nothing can stop me from advocating and educating and supporting. I will have a silent understanding and an unspoken bond.

I would not question why I struggle; I’m only grateful I keep struggling. I’m grateful I’m alive. I’m grateful I can feel such pain, because it makes the happiness and joy more blissful and beautiful than I could ever imagine. I’m sorry for my family …that they have to be burdened with my illness too, but I don’t demand God take it away. Part of me is quite embarrassed anyone should be storming Heaven with my little plight. Indisputably, I am on the right path and God is with me.

Chronic Migraine and I fit in the same body. And we don’t share well.

There’s this “edge.” Yesterday the edge happened at 6:30pm. 6:30pm. Unbelievable. What do you do with 6:30pm? Get out of bed and shower and get ready for the day?🌞 No, cuz it’s only “the edge”…migraine is still there.
And – good morning – it’s still here today.
Chronic Migraine and I fit in the same body. And we don’t share well.
#ChronicMigraine #ChronicIllness #invisibleillness djk #MyBeautifulMigraine #speakyourmigraine

Emgality, CGRP trial 2

Big day for #MyBeautifulMigraine
Botox magic juice injected ($1438.33), and ready to start (and invest my heart) into #CGRP attempt #2 #Emgality
#ChronicMigraine #WaitingRoomShoePic

Praying this one helps.
Praying insurance covers.
Praying I don’t react with intolerable side effects. Anxious with tentative hope.

“Hope” is the thing with feathers –
That perches in the soul –
And sings the tune without the words –
And never stops – at all

Migraine day…all the way…weather and allergens are going their thing…

Did my Emgality loading dose tonight. Easy-to-use pen syringes… but HOLY MONKEYS the shots HURT compared to Aimovig!😭 I’m ready for migraine to stop cold turkey tomorrow once Emgality takes effect!👍


As doctors taper or end opioid prescriptions, many patients driven to despair, suicide | Fox News

The Faux Opiate Crisis

Congratulations Faux Opiate Epidemic, for driving human beings afflicted with Chronic Pain to suicide over facing a hopeless life of endless agony.
Addiction is not Chronic Pain. And dependance is not the same thing as addiction. I’m happy to explain to anyone with questions. It’s hard enough struggling with pain, add to it social shaming and widespread, media-driven ignorance. 😕 This War on Opiates (now extending to other med classes having nothing to do with opiates) does NOTHING to address and help those souls afflicted with Addiction which is a horrible disease worthy of treatment and care.
And lastly, legislating what doctors can and cannot do is obscene. The government has NO place in my relationship with my medical experts. Get out, government! Do the jobs you should: strengthen our military, care for our vets, keep us safe from terror attacks, aid our people caught in the wake of natural disasters! And for the love of everything holy, STAY OUT OF MY RELATIONSHIP WITH MY DOCTOR; it’s none of your biz!
This topic does not affect all people …but someday, it just might. As the list of regulations grow and expand to other drug classes …or your family members are sent home from surgery with inappropriate and improper paintreatment, suddenly this will become a priority for people who never thought it would. Will it be too late to reverse at that time?
#patientsnotaddicts #ChronicIllness #invisibleillness