Posted on by MyBeautifulMigraine

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!😊

Posted on by MyBeautifulMigraine

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.

Posted on by MyBeautifulMigraine

One thing my NEURO said to me today

I’ve been so blessed to find Krishna Polkala MD Neurology after my neuro of over a decade, Sara Westgate MD retired her practice a couple of years ago. Her retirement sent shockwaves across the Austin migraine community; we’d lost a huge provider. Dr. Polkala did an amazing act; offering to take as many of Westgate’s patients. Not only does Dr. Polkala has a great bedside manner, he agrees to use my own “botox map” that works really well for me. Instead of the traditional neck injections, I get more in my forehead and 1-2 in my jaw. I always joke that I need a “plastic forehead;” most of my migraines are frontal, not occipital. He also is incredibly understanding about how important Botox is for my Chronic Migraine treatment and will squeeze me into his schedule so I’m on time for every 12 weeks. And he will absolutely collaborate with me on my medication and care.

Every Botox day, he asks to see my photo of my “map,” so he can make sure to follow…

This Botox “map” took several years to get right for me. My neurologist and I collaborated for my personal migraine needs.

Today, I brought my Cefaly for Dr. Polkala to test 😁 … to make sure he can truly understand when he makes recommendations for other patients.

I love a great doc!

He needed me to remove it when Cefaly got to its intense level. Lol.

As he was injecting me today, Dr. Polkala said something really special to me: “You know, of all my Chronic Migraine patients, you’re  genuinely one of the most positive patients I have. Some of my patients get mad or irritated at me if they have a side effect, but you never do.” That truly touched my heart.💜

I explained to him that with lots of therapy analyzing •how much I fight my illness vs. •how much I accept my situation – this has been a constant struggle for me. But I’ve worked very hard to focus my life on just one moment at a time. And appreciate each moment, prioritize what is important to me: •my family, •my advocacy, •my business of serving women, •my friends. If I focus too much on what tomorrow might be; the pain to come – that is the definition of anxiety. If I focus too much on how bad the past has been, how much I’ve lost and been in pain – that is the definition of depression. I need to live in the moment; it’s truly all we ever have, and it is precious. I also accept how critical REST is; rest does not mean “lazy.” And my broken body must rest before and after everything I choose to spend my time on. And that just has to be okay. 🙂

So, I got my 30+ injections on this most precious Botox Day.🎄 And was home before noon. I’ve been in bed the rest of the day… hurting, sleeping on and off, taking my medicine. Hopefully, the magic juice starts helping in about 7 days. It’s been a rough couple of weeks here.

Botox Day, hey, hey!

💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉

Love those forehead injections

#WaitingRoomShoePic #ChronicIllness #ChronicMigraine #RA #SIJD #cefaly #BotoxforChronicMigraine #neurologist

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, sciaticaand 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