Text to my dear friend in Hospice

I’m pre-apologizing for the novella… no need to read it all if it’s too much and no need to respond. I know you’re weak, I know your time and energy is precious, and the LAST thing I want to do is “make this about me” >>b o r i n g<<

But my dear friend,
There’s something I want you to know.

I’m so so sorry I wasn’t always there for you the way I wish I had been. I hate that life—the kids, all the “stuff,” and my own chronic health struggles—so often got in the way. I’ve thought about that more times than I can count… throughout all the years we’ve known each other. You were this special anchor to my new home in Austin 14 years ago, and a light that helped me so much… I was NOT all alone! I found a real life person – and a FUN one too – with a twisted sense of humor – like my own  – with the same struggles I was navigating!

I remember standing with you outside Relax the Back in the Galleria for US Pain Foundation – you were an Ambassador – I orbited your stardom!⭐️ Was there nothing she could not do!?

PLEASE DON’T HEAR THIS AS GUILT. Hear it as LOVE and ADMIRATION.

You are a KINDRED spirit to me – a sister from another mother. From the moment we met, I felt that. Your kindness, your determination for advocacy and community, your incredible creativity, your gentleness, your strength, your heart… they’ve always meant so much to me.

And now I’m thinking of how you would spend hours daily with cupping, stretching, fascia work – my husband and I use our little Ashley Black tool you recommended so long ago… although truthfully, husband uses it way MORE than I! 😂😂 And I’m thinking of our chronic illness group meetings at the library… especially our little group laying on yoga mats enjoying a sound bowl performance🙌🏼 Sound bowls! The stories I would share with husband: she said this today, and we talked about that, blah blah blah. And then our group lost Betty… and you were THERE for her… always showing up – just like my sweet friend always does❤️

We weren’t exactly the same… you needed to lay in a very special, precise way in bed every night while I curled up in a side fetal position always with ice head wrap and went out cold into promethazine 10 hour mini comas😂

I really HOPE you’ve always known somehow, how deeply I’ve LOVED and ADMIRED you, even during the seasons when I couldn’t show up as often as I wanted.

Now I’m thinking of how I would tease you about printing out directions on PAPER instead of just using your phone’s GPS😂 and your PAPER CALENDERS – “Girl, just enter the appointment into your phone calendar!” 😂😂 and how it was always easier for you to call instead of text me… I miss those calls💔 I miss them so much (since you’re no longer able to speak) and I try to remember the last call… I know it was when you were pretty sure your diagnosis was bulbar ALS… and my heart stopped… no, NO, NO, not that, no…💔 I couldn’t be hearing this!

Thank you for being my dear friend. Knowing you has made my life SO MUCH richer, more inspirational… and I couldn’t be more grateful.

You have changed me forever, and I will carry pieces of you with me for the rest of my life. I will never say goodbye, because I will continue talking to you whenever you care to listen… I will ask your opinions and advice when I face questions – big and small. I will talk to you about your children. I promise I will not overwhelm them, but check in whenever they allow me. I will continue to stay a part of the ALS Facebook community you started… praying for the members and offering my support carefully. I may dream of you – feeling a sense of a little visit – I welcome visits! I will listen. And I WILL see you again because I don’t do goodbyes… you are simply too important to me.

I love you.❤️

Original art, Jennifer Landis @composedchaos_artbyJen

My last Neuro appt; a realization!

At my last botox appointment, my Neuro asked me about my chronic migraine status. Sometimes keeping track of Chronic Migraine can be so completely depressing, so I admit I’ve slacked off on my tracker phone apps. But I thought a bit about my recent experiences before answering the question… I realized that while I have migraine symptoms every single day (🙄 of course… photophobia, lethargy, pain, phonophobia, brain fog, and so much more), I really only have about 2 migraine episodes a week that last approximately ~24 hours with treatment. This is an exceptional improvement, for sure. And I truly am grateful 🙌🏼


This solid progress is is a result of my Chronic Migraine regimen right now: •Botox every 12 weeks, •Nurtec (as a preventive) every other morning, •Nadolol 10mg and Tizanidine 4mg every night. For abortive treatment, I still have a plethora to cycle: Reyvow, Maxalt, Ubrelvy, Butalbitol, Sumatriptan injection, Phenergen, Indomethacin.

However, some very SAD news in my migraine world: Reyvow is being pulled because it isn’t making enough money for the company. I’m so unhappy: I really, really like Reyvow for those particularly bad or nighttime migraines… so I’m trying to fill my script as much as possible before the medication sunsets forever.

Discontinuation of Reyvow® (lasmiditan) for Acute Migraine Treatment: What To Do Next – Association of Migraine Disorders https://share.google/RrDGctNMDlPP7hmX0


While I was thrilled to acknowledge this solid Migraine win, my buddies Rheumatoid Arthritis and Sacroiliac Joint Dysfunction still are a huge part of my Chronic Illness daily life. And they never let me forget it!


Love you all… Warriors: keep up the fight!💪🏼💜

My grandbaby time; I LIVE for it! Daisy is almost 3 months, Theo is almost 2.5 yrs. 🩵🩷 GiGi life is the absolute BEST!💖

Still overwhelmed trying to work my biz… but it’s amazing for feeding my soul to serve women, flexibility and honoring friendships.

https://cabi.cabionline.com/TheDivaDonna

Cefaly FTW! – use at least 1-3x a month.
Me at cabi Spring 26 Fashion Week in between sessions… This is how – spend most of my life😂 REST is ESSENTIAL; it isn’t the same as lazy.
MY sweetest and most reliable supporter, Mr Kobo. He is everything ❤️
I haven’t been able to exercise in ages, but I’m actually BIKING now! Our kids got us ebikes for Christmas and we LOVE it!!!🚲

Of course as I type this, I’m quite sick with a head cold. 🫩 It’s not the flu, it’s not very serious, but having “just a cold” while battling Chronic Illness and a compromised immune system is the ultimate injustice! I’ve been incapacitated the last 5 days and hope tomorrow is a better day!😊

Crescent moon migraine morning

And there it is this morning… it’s a crescent shape in my left frontal forehead. A crescent moon shape of pain… a rumbling brawl that will not be silenced; complaining, grumbling, muttering… demanding to be noticed. And so, yes, I acknowledge you, Migraine. The crescent slides down into my left eye. There it is: Chronic Migraine.  I admit it to myself again that – verily – I do have Chronic Migraine. We forever walk hand-in-hand. Old frenemies; recognizing each other every day. Each day the sun rises, arcs across the sky, and sets, as the moon follows. There are no holidays. There are no resets. There are no interruptions… our relationship is built on rock and resolve. We are in this body – and share this life together. There is no cure for Chronic Migraine.

I’m listening to you crescent moon. I hear you. When I close my eyes… when I open them… I hear you. And I recognize and know you.

It is time for me to be honest, and it is time for migraine medication. I’ve moved back to my prison bed… supine pose… I took a maxalt with Marc’s assist because he is just that awesome and I love him dearly with my whole soul.

And the riddles start immediately: will the medicine work on crescent moon? If I stop here, right now… supine in my prison bed, resting, releasing every tenion in my Chronic Migraine body; a state of intentional repose… will the maxalt start to erase the constant fierce ache slipping into my eye? Will it do anything? Will my body just ignore the maxalt? Or will it stand at attention, metabolize and perform as it is intended, and silence the crescent? Always the same riddles. It’s boring. It’s tedious. It’s stupid. It’s repetitive. It’s the same old story and just a new day.

As I bring this small post to a close (keeping only one eye open and intentionally reslaxing), I can report that the crescent is quieting. For now, at this time, maxalt is working. 🌙 And that is a wonderful, wonderful thing.

A Mama’s Greatest Christmas gift

Tonight, as I lay my head down (and listen to Marc’s soft snore); the chicks are ALL in the NEST: Corey, Nick & Iris, Robyn & Liam… and Ken & Courtney (just 30 min away in Austin Town) will be here with the babies Christmas day.🎄
TRULY, this is THIS mama’s MOST wished-for Christmas gift 🎁 I can’t yet sleep; I am SO HAPPY and my heart is SO FULL.
Memories flood my mind of the years and years of God’s privilege of raising such remarkable humans with my amazing partner and the best father in the world: infancy, toddlerhood, school age, the teen years, and finally, college time… We did it together – teammates always.
As they grow and soar, these moments of all-together-ness become more and more rare. There are SO many ot them: FOUR! And I was prepared for this time (but we are never, REALLY prepared)… it is my greatest wish and privilege to see them become independent and break ceilings, find partners to love and who love them… I am the proudest of mamas.
If they allow me to snap a great FAMILY PHOTO on our steps again this year, I’ll be over the moon and Christmas cards can go out!
They are HERE; they are HOME… everything else is just confetti.

Chronic Illness takes no holidays…

It’s the most wonderful time of the year! Like everyone, I have so much to do and no spoons with which to do them. It’s ok. One moment at a time and keep smiling. You can do this! Together, we can do this! Prioritize what matters: your family, your intentions, your health and peace of mind. The little stuff doesn’t matter so much.

If you’re SMILING, you’re WINNING.

Hugs to all the people fighting the battles with their bodies, but showing up anyway. 💜

Last year Christmas:

And this year Christmas:

And you know what? It’s all OKAY! 😂