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. Shameand 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.
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.
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.
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!😊
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.
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!
This past weekend was exciting; I packed my bags and flew to California to attend cabi Fashion Week for Spring 2024. Cabi is my new business that husband and I have embarked. We’ve converted our front room into a home boutique, and I’ve been a cabi personal stylist for one fun season. Trying hard to start this adventure with fun and service and determination.
I knew this would be hard with chronic illness and I’m juggling as fast as I can. I never would have done something so big without my husband’s encouragement and partnership. I call him the CEO, accountant, technical & IT director, set designer, and photographer. I’m just the smile.
And I do love it. As a cabi Stylist, I get to do the funnest job – serve women, help them build a closet that makes them feel beautiful & confident with amazing value, enduring, and on trend clothing. It’s like I’m still an RN but a little different. Service makes me incredibly happy and rewarded. It is my love language.
I arrived in Cali on Wednesday. Thursday and Friday and Saturday were full of fashion shows and classes and communion with other stylists. I wore my #cabicute and took notes… and died a little more each minute. Today, Sunday, was a day full of travel home… canceled flights, hours without food, waiting, later flights, little sleep, and rough travel trying to beat the Austin winter storm snap.
When I finally made it to baggage, my wonderful second son was waiting for me and my heart leaped as I jumped into his bear hug.
The new cabi Spring 24 collection arrived Friday at my home while I was away!
We made it home without sliding off the road… and it was wonderful: great discussions about my trip, recent flicks, and all sorts of conversation.
I am Home. In PJs. Ice on head, heat on back and sciatic. My body is a swollen balloon, and everything is flaring. I am in so much pain that I can’t sleep. I’ve been awake 24 hours, and I know the crash and burn are coming. And that is slightly completely terrifying. Like jumping off a cliff while on fire, watching the approaching razor wire on the ground as I get closer and closer to impaling it.
Now to climb.
I worked very hard to keep up with the other stylists these last 4 days. What a beautiful disaster I was: trying, trying to make it to 08:00 start of day (I’d usually made it at about 15-30 min late). I found a quiet corner – or even out in the open – to rest before the next session, then drag myself to the next class. On the third day, I could do it no longer; I had to skip out on the last 2 classes and go back to the hotel room to rest for the closing party Saturday night. After eating at the closing party, and skipping out a couple hours early (about 20:00) my friend and mentor said: “Can we take off our shoes and just walk back to the room barefoot?” I practically danced! Kicked my cute pink stiletto mules off, grabbed them, and skipped through the convention hall, across the cement courtyard, through the grungy carpeted hotel and into the room. SKIPPED! Margaret followed me and observed: “Look at you! You’re like the reverse of normal people – you’re dead tired during the day, but come alive at night!” I literally stopped in my skipping tracks – she was 100% correct! I affirmed: “You are absolutely correct! I struggle to get out of bed before noon but sometimes have an energy burst from about 19:30-22:30 hours. That’s when I try to get some things done! That’s why staying overnight with my grandbabyboy from 22:00-08:00 is the best “shift” for me! It’s when I’m able to do my cabi work or even clean a tiny bit around the house. It’s only about an hour or two, and it doesn’t happen every night, but it’s completely backward and pointless and sad. Very very very sad. I wish it wasn’t my reality.”
And here I am at 05:00… finally in my bed, finally safe at home, my ice, my heat finally next to my love and soulmate. I’m looking at my elevated feet… so swollen, so much pain… in my head (from travel, activity, weather and altitude). I have my medicines in my belly … and I’m hoping they start to help soon.
This was a hard trip. This was a lot of work. And I know recovery will take weeks. I will do this because… I willdo this… because not living is not an option.
Breathe. In and out. Allow the medicine to start working on the pain and anxiety and adrenaline. Get more ice. This one is already lost its chill. Tell my sleeping beauty husband to roll on his right side because he’s snoring.
I will do this. I’ve done so much already!Now to climb.
Wednesday: traveling alone to Fashion Week in CA!#cabicute Outfit 1, Day One; an homage to Spring 23, my first “mid season launch” outfit. My beloved Chanel-inspo boucle Coco suitSmiles from cabi home office Thursday AM: touring the cabi home office – a breathtaking peak behind the magic of cabi: “We are the HEART of a culture with AUTHENTIC & TRUSTING relationships…”My incredibly cabi successful mentors and friends, Margaret & Jackie… as we gleefully watched the models stomp stomp stomp the runway in NEW Spring 24#cabicute Outfit 2, Day One: Spring 24 Speedway skirt & Cherish blouse… a Joie de Vivre style. I heart everything French fashion; j’aime tout ce qui est français!Thursday PM: wardrobe change for SPRING 24 FASHION SHOW! The most FUN! Mediterranean dinner after – SHWARMA!#cabicute Outite 3, Day Three: #cabicute a vintage cabi jazzy suit with coral and gold accessories; my beret was a huge hit (lol) and interestingly enough, an unknowing nod to the new en trend of Joie de Vivre! Because if there is one fashion statement I love, it’s “being a French girl.:
Friday was a FULL FULL day of classes and communion and comradery… topped off with an out-of-this-world Italian dinner! Dreams do come true! Amo il cibo Italiano!
#cabicute Outfit 4, Day FOUR: finding my vintage cabi pink flows right into Spring 24’s new “Barbie-pink!”Found a couch on the second floor… busy area and many people saw me and I don’t care. My weariness didn’t care. I set a timer on my phone for the next class and hid the phone under my cheeky jacket on my upper chest for the vibration to wake me. Lol. It worked well! Someone snapped this shot and sent it to me: entitled, Sleeping Beauty. Haha!Absolutely could NOT take anymore classes on Saturday… had to skip the last 2 for bed sanity.Missing my grandbabyboy so terribly! #cabicute Outfit 5, Day FOUR: A little rested and ready for Closing Party “Garden Gala” in celebration dress.Stunning cabi closing Garden Party!I love the cabi customer care team mission statement!💓 “We are the heart of a culture with authentic and trusting relationships…”#cabicute Outfit 6, Day 5: Convention wrapped and soooo ready to get home to my loves!In Austin! Waiting forever at luggage carousel for my luggage.
Home trying to heal, trying to sleep! Hurting and hurting more! Good night all!
**Day two home update: I got SICK! Gah. I knew it was a huge risk since I’m immunocompromised and a chronic illness fabulous professional patient. Sigh. Appt set for sick check tomorrow at my primary doc office. It may be strep or flu. Covid home test negative. If I’ve gotten my grandbabyboy his first illness, I’ll never forgive myself. On the other hand, I’ve unpacked but haven’t attempted laundry. I’ve unboxed the cabi collection with significant and amazing help from my daughter-in-love, Courtney, but haven’t been able to do any significant “work” for the season diving board. I’m so disappointed in myself. Friends coming into town for a weekend visit, dust bunnies in every room, Christmas decorations everywhere needing to be put away, and dirty bathrooms surround me. Too weak to make it to my computer in the Boutique to do “work” and follow up. Sore throat, serious migraine, fever of 100°, massive body aches. Here’s the thing: when Chronics get ill, it’s not the same as normal people getting ill. We are ill with flu-like symptoms+ every single day. Getting ill makes us practically hospice patients. It’s bloody ridiculous.
Slowly emerging from sleep. Christmas morning is here. Some migraines still shock me, and this is one. I have taken medicine, and I’ve placed ice all over my head and neck.
Analyzing the migraine that is Christmas morning… it’s like an irate parasite climbing up the left of my spinal cord, into the very center of my brain… reaching out through my right temple and left occipital.
This Christmas migraine is colors and sparks and electricity and fire. And my neck is so tender and sore from the weight of my enraged brain.
This is an all-body experience… Every part of my body is aching, wounded, and in pain.
Dear Christmas Migraine, please release me.
8:00-10:00 AM, but I still have hope I can turn this holiday with family into something worthy of celebrating.
I had my first migraine at age 6 at a day camp and was episodic for many years. My mother actually diagnosed me – she was a migrainuer herself and saw all the symptoms I presented: sensitivity to light and sound, I was pale and sick and couldn’t move without terrible throbbing head pain. The day camp was very loud and crowded, and I was probably hungry and anxious. I became chronic about 10+ years ago in my 30’s and have done so much research and testing to become a Migraine Jedi.
The most critical part of migraine is preventing yourself from going chronic – the number one reason people become chronic is from inadequate migraine treatment. It’s shockingly simple. Inadequate migraine treatment.
The first and most important step I STRONGLY recommend is downloading a migraine app on your phone immediately. It allows you to track your migraines, their start/stop, weather info, food info, and most importantly, it can help identify your triggers. Avoiding migraine triggers is key. Also, a migraine app (such as Migraine Buddy) will be invaluable for you to share with your physician. Data data data! Incredibly powerful and helpful.
My triggers were hormones, stress, letdown AFTER stress, and any fluctuations in weather: barometric shifts, too much sun, too much wind, changes in pollen, changes in altitude, etc. Once you’ve established data in your migraine app, the next huge component is PREVENTION. There are several simple things that have a lot of scientific data and are easy to implement. Of course, following a good meal and sleep schedule. But also: MAGNESIUM 400-500 mg daily (I recommend taking at nighttime because it can make you sleepy). Also, RIBOFLAVIN and CoQ10. Two herbs have good results, too: Feverfew and Butterbur. Next, if those aren’t helpful enough (and often it’s not); it’s time to move to good medical care. An excellent place to start is:
But often, for young women, simply getting on birth control can make a major improvement if your migraines are related to hormones. It’s truly amazing.
Moving to medications: There are several first tier meds for migraine prevention: cardiac meds (atenolol, nadolol, propranolol, verapamil), antiseuzure meds (topamax, zonisimide), antidepression meds (amitriptyline). They’ve found that some of these meds work off-label for migraine prevention. But they are not necessarily the greatest. Some doctors will even skip them since there have been other better medications developed now.
Personally, I’ve found incredible help from Botox for Chronic Migraine. It’s been used with great success for over 20 years. It often takes a while for insurance approval. And you’ll need to allow 3 full treatments (9 months) to evaluate its helpfulness. I receive 30-40 subcutaneous injections immobilizing my muscles in my forehead, temples, occipitals, neck, traps, and jaw.
There are also a bunch of anti-CGRP meds that hit the market in 2018, and I’ve been able to test them. Some are once a month injectables like Aimovig, Ajovy, Emgality. There are migraineurs called “super responders,” who have been able to almost completely eliminate migraine from their life with these injectables. But personally, I’ve had the best luck with Nurtec (oral CGRP) taken every other day. CGRPs are also used as abortive meds. And I’m going to talk about them after prevention. Another important diagnostic for migraine is to make sure there is no anatomical reason for your increase in migraine. For me, my “cause” is hereditary. My mother, father, grandparents, and brother all got migraine. So it was no surprise that I suffered (although none of them became chronic). If there is no hereditary component and your migraines have started out of the blue, or you have a NEW migraine symptom: a full neuro workup is in order. An MRI with and without contrast and other tests, if deemed necessary.
Next step: ABORTIVES. This is critical. You’ll need to be able to treat your migraine appropriately and AGGRESSIVELY. A full glass of water or gatorade, ibuprofen 600-800mg and rest may be all you need. However, ALL medications have a possibility of causing MOH (medication overuse headache) or REBOUND. Even ibuprofen taken too often can cause MOH or rebound. So if youre having frequent migraine, you’re going to need other options to treat: the TRIPTANS, developed in the 1990s (imitrex, maxalt, zomig, frovo, and more – they can be administered orally, injection, nose spray and more). Also, CGRPs (Ubrevly – Serena Williams is spokeperson lol, Nurtec, Reyvow – these are orals). So, if you are chronic (15 or more migraine events per month x3 months), you’re going to need to circulate through these options to avoid MOH. Another secret weapon can be an antiemetic like phenergen – which not only helps with nausea and vomiting with migraine, but it also has some evidence of pain relief. Also, some doctors may prescribe a mild muscle relaxant such as tizanidine… which can help interrupt the clenching and tension involved with migraine – helping break the pain cycle. Lastly, I need to address MOH, rebound, and status migrainosis… migraine events have 3-4 stages: 1) prodrome, 2) aura (only 1/3 of migraineurs have aura, I never have), 3) headache, and 4) postdrome.
Through intensive study, it’s been determined the time of a migraine stages 1-4 last 12-72 hours. IF YOUR MIGRAINE IS LASTING LONGER, it is probable you are in status migrainosis. This is NOT your fault. It happens. A lot. If you are in SM, it is important to involve and get treatment from your physician. Simple solutions to interrupting and ending SM are steroids: your doctor can prescribe a steroid dose pack. More intensive treatments are infusions: like magnesium, depakote, steroid, torodol (actually, these can be quite effective! And there are actually infusion centers located everywhere that offer IV drips – some for hangover lol, but they also have a “migraine cocktail”) Quite honestly, the worst option for SM is going to an ER or ED. They are just not equipped to deal with migraine… these retail drip centers are better!
But your physician can also order infusions (either in office or an infusion center) for you, which would be covered by insurance. Personally, I do very well with a steroid dose pack and then complete rest. Because TIME and switching to meds like phenergen (instead of pain meds and migraine meds – which I STOP taking altogether) is the most tried and true way to END a lengthy migraine event.
Lastly, I want to touch on non medicine migraine treatments! My freezer is FULL of icepacks! My favorite is the Headache Hat from Amazon.
Wrapping my migraine head in ice is so helpful for me. Some people prefer heat. Some people use a chiropractor for adjustments. (They only cause me migraine) But I am helped by medical massage. Some people use accupunture. I didn’t have much success. Applying cranial pressure can help migraine as well – if a family member can help with that, that’s great! https://www.verywellhealth.com/craniosacral-therapy-for-migraines-
It’s like a tens unit for your head. Very safe and helpful. But it’s not cheap and not covered by insurance. Cefaly does have a money back guarantee, which is awesome. Another device I’ve tried is Relivion. https://www.relivion.com/
Also expensive and not covered by insurance. Sigh. Another device with awesome data for episodic migraine improvement is Nerivio! https://nerivio.com/
Basically, Migraine sucks sucks sucks. But there is SO much to do proactively and preventively to control the neurologic disorder. I have only touched the surface of information! 🙂
You will hear (from well-intentioned friends and family) about daith piercings, kale smoothies, CBD and essential oils, and other mystical “migraine cures,” which I don’t completely discount. But anything claiming a “cure” for a neurological disorder that HAS NO CURE… make sure to take that advice with a grain of salt.💜
Example of annoying and unhelpful migraine advice meme
Know one thing – the most important thing – YOU ARE NOT ALONE, and there is HELP out there and people who understand your struggle. Getting to know as much about your neurological disorder as possible is the BEST road to success. Episodic migraine is acceptable. Going chronic should be avoided at all costs.
Please please let me know how else I can help. Migraine Advocacy is one of my greatest life’s passions.❤️
Migraine is the third most common disorder worldwide, affecting 1 in 7 people. Chronic migraines affect about 1 in 50 people worldwide. Women tend to be affected by migraines more frequently than men.
People think of Migraine as “a bad headache.” It’s hard to explain the entire systemic experience. Probably because once chronic, your body in a constant state of “fight or flight,” or prodrome/postdrome cycles.
*Exhaustion *Lethargy *Generalized body pain *Sweating *Impaired thermoregulation *Nausea *Altered appetite *Depression *Anxiety *Throbbing head pain *mild to moderate heat pain
mybeautifulmigraine 