Friday Migraines

Darn it, migraines love Fridays. Stress letdown. Now that I’m on Aimovig I don’t want anymore migraines. Lol. But wishing this one away isn’t really working.

So anxious today. Appt with my pain doc where I have to explain all the work I’m navigating to rebuild my pelvis. With my current team of Jukes/Le, I’m looking at surgery in August. Cystocele grade 2, uterine prolapse grade 3, rectocele grade 3 and a whole lot of gross plus indescribable lavator pain. Absolutely ridiculous.

I was anxious to see Anthony (pain doc), I was anxious about the 2 hour drive, and I’m anxious about our friends (family of 4) tomorrow for a week.

When I got home, I dropped into bed and my head exploded.

Always Friday Migraines. Party on.

Happy Chronic Migraine Awareness Day!❤💜❤


2 days post Aimovig injection

There was no migraine today. I’m 2 days post Aimovig injection. Of course this doesn’t really mean anything yet. But I’d just like to announce… that my head didn’t hurt this Friday (I waited until midnight to post…so not to jinx. Lol)
There was no migraine today. It took a break. It left me alone. I can move my eyes all around and shake my head gently, but everything feels GOOD. And that’s a Big Deal.
Normally I might say, “I’m ok” or “It’s not too bad” but today I can say… My head was Good.🌞
I’m still in bed almost the entire day because of my girl part’s agony and “hanging out” waiting for surgeons…but my head was GOOD.
And that’s all I have to say about that.
See you tomorrow!🌞
#ChronicMigraine djk #MyBeautifulMigraine #MAM #MigraineAwarenessMonth #Aimovig

The CGRP is almost here.

Update: The specialty pharmacy called.
My very own 2 month trial of Aimovig arrives Wed 6/20 via Fed Ex. It’s very hard to describe the range of emotions in my heart right now: expectation, hope, fear, caution, and so many tears.
I know no matter what, it’s not a “cure,” but I’ve *watched* and waited for this medication so long… If there is a way… if there is a chance… Anyway, thank you all for supporting me on my journey.
#ChronicMigraine #aimovig #CGRP
djk #MyBeautifulMigraine

Migraine Awareness Month 2018

Let’s learn about MIGRAINE! A neurological disorder, not a headache. A small percentage of migraineurs struggle every single day…enduring symptoms, recovering from attacks, enduring anxious dread for the next inevitable attack, and/or attempting to avoid their migraine triggers. Chronic Illness makes your world smaller and smaller…your daily obstacles are not only migraine-related, but the consequential oppressive depression and sneaky anxiety that accompanies any Chronic condition. It’s like watching your dreams, freedom, life slip through your fingers while you try desperately to hold on to who you once were. Every day, every hour, you have to think about your head. A little personal prison with metal bars accompanies you everywhere. I dream of opening the door of that prison some day. I dream of a world where I don’t have to think about my head, where I look to my right, my left, behind me…and there’s no evidence of that Chronic companion. Freedom. FREEDOM. Freedom to Live.❤💜❤ djk #MyBeautifulMigraine #MAM2018 #ChronicMigraine #speakyourmigraine #MigraineAwarenessMonth #patientsnotaddicts #ChronicIllness

My Dead End Search for the Root Problem –

Well said.
Sometimes I wish the world understood this. After years and years and years of searching, trying everything, every angle, every bit of “advice” from friends….there’s this point of… Acceptance. It’s not a Hopeless place – not at all! (I still believe I will improve!) But it is a realistic place. I’ve tested my limits hundreds of times. I’m a friggin expert in my limits. I’m an expert about Migraine – especially my own “brand.” And I haven’t been sitting in my house the past decade just suffering. I’ve been a rockstar at trying to fix me. 🌟🌟🌟🌟

And I have a team of experts employed. The best I’ve been able to find. They don’t sit back on their heals either…they WORK for me. Constantly trying new therapies and angles. We have a cooperative relationship. Should they give up on me, it will be time for me to move on.

Healthy diet, yoga everyday, respect my limits, practice self-care. ♥️💜♥️

The quiet hours with a loud migraine

3 am is an interesting time on a migraine night. I rarely have insomnia so it’s not an hour I “see” frequently. It’s a quiet time in our house but my head and body are a raging storm. Ridiculous Texas winter allergies are at their highest (stupid cedar and elm – action: counter pollen by pouring eye drops in each affected eye) and – hooray – there’s something whacky happening with the barometer now – I can feel it slamdancing aggressively in my right temple – so it’s a priority I visit the freezer for a new ice pack crown. The one strapped to my head now has gone all warm. Lol. My heart’s beating out of my chest with anxious questions: Will I be able to sleep? Will I need to take medicine to control this migraine (I get 9 dissolvable pills a month plus 6 rather painful subconscious needless shots)? Will medicine even help if I do choose to take it? And wth is my Sacroiliac flaring?

Plan of action: trip to freezer, readjust heating pad for my SI, get comfortable again with my myriad of pillows, ruffle my darling husband’s hair and give him a kiss as he sleeps peacefully. And then…lie very still and try to breathe through the pain so I can fall back asleep.
Sleeping offers the oh, so heavenly temporary reprieve from pain.💜❤️💜
Have a beautiful weekend friends! Enjoy every moment you can!