Posted on by MyBeautifulMigraine

The big L

Forever determined to show up—for others, for myself, for my life. Even when chronic illness changes the way that happens, the intention stays the same: to be present, to care, and to keep choosing connection.

Get UP.

Get DRESSED.

Show UP.

And NEVER GIVE UP!

Marc came to me this weekend, took my hand, looked me kindly in the eye, and said I needed to end my business; after 3 years, it hasn’t been financially beneficial. This came out of left field. And I just sat there … listening to him, tears leaking out of my eyes. Of course he’s right, I know it – I truly suck as a businesswoman. This isn’t a secret. I know it, he knows it. But that was never my primary WHY. My business makes me feel so much purpose: to serve women, to be involved in something bigger than how small my world has become. I’ve been working so hard, every single day – often from my bed – to create building blocks. I’ve pushed myself beyond limits I thought I had. I’ve dreamed. I’ve troubleshooted. I’ve been creative. I’ve been super frustrated. But I’ve had such joy. I’ve spoken to myself kindly, and I’ve never given up – “one foot in front of the other” every single day. And through it all, I’ve had only one, ONE person, who believed in me; only ONE single PERSON in the whole world who took this journey WITH me, cheered me on, helped me. He’s actually the reason I started this business in the first place; he wanted me to do this! Not any of my friends, not any of my family, never a mentor, no one, NO ONE, but him.

And now… he’s dipping out.

What am I feeling? Depression, stupidity, failure, foolishness, embarrassment, smallness, silliness, so much grief and sadness, even a bit of betrayal? I feel like here we go again, another fail in a long list of life failures. I don’t know. We’ll have to have more and more and more talks. What if I tell him, No, I want to keep going – my WHY means too much for me? … even without his support?

I just do not know. And it’s honestly boring to exist in such a STUPID state of self-absorbtion and self-pity. BORING and embarrassing! I do not like being here. Shame and isolation… there you ARE, I see you, old friends! Welcome home and back into my soul, my shadow, and my brain. It’s been a minute. We’ll get to know each other again.🫂

Am I seeking pity? Encouragement? An atta-boy? Nah, I think I just want to crawl into a hole and wallow all by myself. Alone is my safe place to be. I never take myself very seriously, I’m a goofball, a little zany, a spaz …. but I AM always authentically ME.

I had a WHY that was so crystal clear and personal and so important to me, gave me intention and made me very proud. These things happen. Sometimes, you can’t spin it – you just have to own it. And I’ll let it stand here in my heart, perfectly imperfect. As the kids say, the Diva Donna cabi … is just lame and another fail.

It’s about JOY!
I just feel so … so … stupid.

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The rise and fall of Reyvow

http://Discontinuation of Reyvow® (lasmiditan) for Acute Migraine Treatment: What To Do Next – Association of Migraine Disorders https://share.google/x82xhfqvCMTlODKe4

Eli Lilly has announced they’re discontinuing REYVOW. And this is very disappointing news for me and my personal Chronic Migraine journey. For me, Reyvow has been very effective for those very bad migraines… the ones that send me to a dark room and render me incapacitated. I’ve heard that it can cause severe drowsiness in many patients, but considering I’m already incapacitated, severe drowsiness is a welcome respite during those migraines where I’m praying for a crowbar to the head to end the suffering. I’ve even noticed that taking it at night, I can wake up the next morning with a pretty decent brain.

I remember one episode: I was battling a bad bad migraine for a couple of days, but desperately wanted to float the river with my DIL the next morning. I took my nightly meds including the Reyvow and woke up feeling… good! It was almost as if my migraine cycle skipped postdrome altogether!

And Courtney and I floated the San Marcus and I thoroughly enjoyed the sun, cool water, green trees, and company. That was a happy, happy day. Surely a great commercial for Reyvow. 🌞😎

My FAVORITE TX summer activity: floating the San Marcos in our own river tubes with mesh bottoms, headrests, and cup holders – it’s a TEXAS thing!😎

My Neuro has instructed me to refill my Reyvow prescription “as much as possible” before it sunsets since I find it so helpful. My understanding is the medication just wasn’t making enough money for the company. Reyvow was specifically a ditans med class and there are no others like it on the market at this time.

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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.

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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.

Posted on by MyBeautifulMigraine

Prison

Could I be the only one in the world who spends 20 hours a day in bed. It’s so embarrassing and ridiculous.

It’s “morning” for me… 11:30 am. I was able to make my way to the freezer for more ice for my head. Heater on my back, portable massager on my piriformis.

The normal chronic parties are happening in my head, joints, sciatica and lower back. But there’s even more chiming in: my muscles are all sore… as if I have the flu. I don’t have the flu… this is just all normal pain.

Using my hands to thumb type on my phone, hurts. Keeping my eyes open to write, hurts. Laying on my side in bed, hurts.

I spend sooo much time trapped in my bed. I hate it so much. Once, my bed was a safe place of rest and comfort. Now it’s a prison sentence.

There is an entire world of handicap people with crippling invisible illnesses.

I worked all day to get out for an hour dinner with friends. Do I look sick? Plastered smile.

#InvisibleIllness #ChronicIllness #ChronicPain #ChronicMigraine #RheumatoidArthritis #ProfessionalPatient

Posted on by MyBeautifulMigraine

Walking around the world I used to know… I’m just a ghost with a smile.

Morning breaks, I never see it; I am sleeping.
Noon chimes, and I may arise.
My life revolves around my bed… once a respite, is now my prison.
Waking in the same position I fell to sleep 10 hours ago… regaining consciousness; shuffling off the coma and disentangling from sheets and pillows and wires of: Now cool heating pads and warm ice packs.
When I must, I shed my second skin of nightclothes.
When I must, I wash my face.
When I must, I slowly apply the makeup, put on the hair, and dress in the clothes.
When I must, I step out into the world I once knew. With all my effort and sheer will, I make myself move… just a ghost of myself with a smile.

#ChronicMigraine ##ChronicIllness

Posted on by MyBeautifulMigraine

When Migraine begins to drive one MAD

On day 3 of MIGRAINE, I start to lose my shit. I start showing signs of mania and agitation. It’s not pretty. It’s not a pretty mind. Medications fail… and I pull back on using them. Instead, I turn to alternate medications like phenergen (antiemetic) or tizanidine (muscle relaxer) or a steroid pack and alternate drug-free treatments like Cefaly and all the ice packs. Sometimes, the freezer just can’t keep up with the migraine.

“Loveliness,” thy name is MIGRAINE day 3

I’m waiting for my Botox for Chronic Migraine to start working – administered by my neurologist 4 days ago (but almost 3 weeks late from the 12 week mark it was due). It usually takes at least a week and a half to start paralyzing the little muscles in my head and jaw.

Growing roots in my bed. I have worn only PJs for days. I smell like sleep and illness and idleness. No makeup, not even a hairbrush. It is a pathetic state, an embarrassing state. And my brain is a scribble mess of perception mixed with ominous and intrusive depressive thoughts.

The entire body of chronic issues chimes in on the migraine madness; RA a-flaring in hands and feet, sciatica a-fire starting in my right piriformis down my leg. There is heat for that ailment. I can feel my body is completely anxious and bound with tension. I can not relax. It is the typical pain/anxiety circle. I know this place, I remember it and I despise it.

Chronic Pain cycle

I know a medical massage would be prudent if I could afford the luxury and help. But instead… I’ll just keep breathing: one breath at a time. One moment at a time. There will be a change in this dark path. I know it. I know it because no migraine lasts forever. Time is always a healer. But in the darkness, it’s hard to believe it, even though I know it is true.

Hoping there is a world outside my little messy bedroom, full of happiness and health and joyful humans. God bless you all and be well.

#ChronicMigraine #ChronicMigraineAwareness #RheumatoidArthritis #ChronicIllness #ChronicPain #BOTOXforChronicMigraine #ChronicPainCycle

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12 hours of mini coma

Let me tell you a tiny story about Chronic Illness.

Last night was a typical night… I’d rested all day. No makeup, no clothes, just PJs and ice and heat and medicine. I fell asleep at 02:00 am. with my head wrapped in ice and 2 heating pads on my back and right hip. Mini coma ensued. I dreamt. I kept sleeping.

At 2:00 pm, I woke up. Detangled myself from heating pad cords, got to the restroom, and took my morning meds.

A 12 hour mini coma. Restful, right? Nope. I’m absolutely EXHAUSTED. My head has a mild migraine, my back is screaming. I slipped back into bed.

It’s now 5 pm, and here I lie. Changing my head wrap ice, laying on the heater, and binging Millionaire Matchup on Netflix. I’ve had some coffee and my medicine. I can’t face getting up to actually eat anything because I’m too tired.

How can anyone be tired after 12 hours of sleep? 🙋🏻‍♀️

And that, my friends, is Chronic Illness.

It controls my life, it is bigger than my life. It’s a huge monster, and I’m this tiny spark of a person living under its smothering  layers and layers. It makes me very sad. Never in a million years could I have imagined this kind of existence. I had no idea it was a possibility. As they say: with Chronic Illness, you don’t get it until you get it.

Maybe I’ll be adventurous and actually get a small snack when I get some new head ice? Wish me luck!

Hello World and all that inhabit it!😊

#ChronicIllness #ChronicMigraine #ChronicPatient

Posted on by MyBeautifulMigraine

Those moments you never forget… because an angel intervened

There are moments in my life when regular people have done extraordinary acts for me. And I don’t believe these everyday angels have any idea how they’ve blessed me.

The day Dawn was an angel.

Dawn is my age and the owner of a home cleaning team that helped me out once a month. Dawn is a special person; she works so hard at her company and struggles daily with her own health autoimmune conditions. It was a time of my life when I was realizing raising 4 young children, working part-time as an RN, and starting to understand that my migraine disease was now becoming chronic. I had been cleaning my own house, trying to juggle life and dancing as fast as I could… I fell ill with a horrendous case of Shingles that crossed 8 dermatomes on my left side. I have always said that Shingles illness was a message from God Himself; He yelled at me that I needed help; I could not do it all alone, and I needed to hire cleaning help. When the cleaning team arrived once a month, I would scurry like a mad woman the night before trying to tidy up so the cleaning team could actually clean the house the following day. Most busy moms know what I’m talking about. The precleaning cleaning for the cleaners!

Anyway, when the cleaning team arrived, I would always take the opportunity to do the laundry while the team scrubbed and made the house shine. I felt like I could at least look busy while they did all the tough work. And oi, with 4 kids and a husband, I had a LOT of laundry. About 5-6 large loads would end up piled high on the living room couch, and I would fold fold fold and place in towering piles. Usually, the cleaning team was done WAY before I was done with all the laundry!

There was one day in particular that always sticks in my mind: I was trying to do all the laundry while the cleaning team worked, but I had a blinding disabling migraine. I just could not function even though I desperately wanted to look productive and be productive alongside my wonderful cleaners. But it was just too much. I caught Dawn on the side and told her: “Dawn, I am so sorry, but I have to go to bed… this migraine is absolutely debilitating. I am so sorry.”

Her face and response were complete understanding: “Of course! Go to bed! We’ve got this!” And I left their payment check on the counter and went to bed, wrapping my head in ice.

The cleaning team continued to clean around me… the upstairs bedrooms, the kitchen, the living/dining room, dusting, vacuuming, the master bathroom, the master bedroom, and all the floors.

They were done in a couple of hours. Dawn tiptoed into my bedroom, where I was under the covers incapacitated. She lovingly and softly touched my hand and whispered to me: “Donna, we’re all done and leaving… we’ll lock the front door behind us. I hope you feel better soon, sweetie.” I mumbled an acknowledgment, but it wasn’t nearly as heartfelt as what I was feeling.

Dawn saw me that day. She truly understood how much I was hurting. And I remember what I felt that day… she spoke to me with such amazing kindness; like a mother talking to her child. And my heart was so moved. And I was so incredibly grateful for her kindness, for her love, for her care. And I don’t think I ever really thanked her enough for that moment. She’ll never comprehend how grateful, overwhelmingly grateful, I was for that moment. Thank you, sweet Dawn. Thank you, thank you, thank you. I don’t know how I can ever thank you enough.

* * * * * * * * * * * * * *

The time my brother Glen was so kind.

My entire family came to town to celebrate my oldest son’s high school graduation. It was a busy time. I had been slowly and step-by-small-step planning a graduation party for my son. I was running on immense adrenaline… determined to pull off a fun party and enjoy every moment and my family. It was a big party – at the community clubhouse with catered food, popcorn machine, music, drinks, a photo booth, a beautiful cake, pictures displayed of my son from babyhood to adulthood… approximately 50+ people attended! The graduation was on a Friday evening and the party was on the Sunday after and it was a glorious party success… everyone seemed to have a great time! Most importantly, my son!

One of my biggest migraine triggers is let down after stress. And I’d been dancing fast on the adrenaline the entire week/weekend. After the party, we cleaned up the clubhouse and transported everything, including gifts, back to our house in a jumbled mess. I would sort it all out later in the coming days when family and friends left and flew home to their many different locations.

While everyone was still visiting in the house and enjoying each other, I slipped away to bed. I got into my PJs, wrapped my migraining head in ice, and put my ice booties on to treat my RA flaring feet. I tried to do the Isish Goodbye; I would just slip out of sight while everyone else enjoyed their time. It was about 7 pm. But my mother and my 2 older brothers sought me out and found me in my bed. I smiled and encouraged them to go join the fun in the other room. My mother and oldest brother, Dave, understood that after such activity, I was completely out of commission. But my second brother Glen had never witnessed me like this. I could see the shock and concern in his eyes, and it broke my heart; I wanted to assure him this was totally NORMAL for me. But he didn’t understand; he doesn’t understand someone living with incurable alignments like Chronic Migraine and Rheumatoid Arthritis. My mom spoke softly to him as all three of them stood at the end and side of my bed: “She’s been under so much stress and needs to recover. This is what happens to her.” (Then my mom probably relayed a story from her own life because that’s what she always does.)

Seeing the impact in Glen’s eyes undid me. I wanted to hop out of bed and be just fine for him. I wanted to do that; but I just could not. I smiled at him through my pain and tried to say something to assure him this was perfectly normal and he didn’t need to worry; he could just join in with the others in the living room. “Don’t worry about me,” I smiled at him.

At that time, Glen reached for my feet and started to massage them gently. He was trying trying to help. The love he gave to me at that moment. The concern in his eyes… it moved my heart in ways I can never express. He gently massaged my aching feet. A moment I felt seen and completely LOVED. And I can not thank my dear brother enough for that moment… for that love and concern. I’ll never forget the way he affectionately rubbed my feet. He saw me. He saw my pain. He saw my reality. And it broke my heart that it broke his heart. My sweet big brother. I will always remember that moment. Glen was an angel that stood at the end of my bed and massaged my aching feet.

#ChronicMigraine #RheumatoidArthritis #impactofChronicIllness #ChronicIllness #everydayangels #grateful #blessed #speakyourmigraine #ChronicMigraineAwareness