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. 💜
My third outbreak. And post 2 shingles vaccines. Shingles and I are in a situationship. It is a fact.
Pushing to start myself this morning … it’s already almost noon. But I have things to do, people I’ve promised … things I need to do for myself and others. I can not stop. I will not stop. But the shingles are here … the blisters on my left posterior iliac have faded, but the postherpetic neuralgia is flaring like a white hot fire.
I’m in extraordinary pain. As well as “regular” pain – in my brain and in my joints, and my back and sciatica.
My Lord, my Lord … I hear you. The shingles have always been a message from you … guiding me, talking to me – yelling at me. You have always been with me, holding me on my feet.
As I listen to you, the tears well up in my eyes … I am listening, and I know I am doing too much … but I feel like an extraordinary failure. I have failed. I continue to fail. My body does not work like other bodies my age. It doesn’t work like it used to work just a few years ago. Around me … I’m constantly surrounded and reminded of all the small things that are huge things that I MUST do. I need to DO. And I don’t do them. Drowning. Trying to prioritize.
Dear God, Quiet my heart so I can hear You. In the noise and rush of my thoughts, help me pause and listen for Your gentle voice.
Teach me to recognize Your whisper in the stillness and through the people You send my way. When I am uncertain, guide me with peace that settles deep within.
Give me ears that are open, a heart that is humble, and a spirit ready to follow wherever You lead. Speak, Lord—I am listening.
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.
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.
I rested several days for yesterday; I was so excited to LIVE. I took a Reyvow Thurs night and woke up OKAY on Fri morning at 8 AM! Drove to my daughter-in-law’s to float the San Marcos with her and her friend. It was absolutely sublime!
After, I made it home to quick shower off turtle river smell and dress for dinner with our good friends Meg & Albert at Ling Wu.
We had drinks and AMAZING cuisine and wonderful togetherness.
When Marc and I arrived home, it was time to start treatment for the migraine that would come.
Today I woke at 9:30. It’s 1 PM now, I’m medicated, have ice on my head, and heat on my sciatica/back. I will not be moving from this bed.
…and it got me thinking about the COST of Chronic Migraine… do people understand the COST?
Now… I’m realizing – for quite a while – I dread it; it makes me anxious. Because I’m so terrified of waking up feeling like crap the next day. It just hurts my soul and destroys my joy.
I look back on my day in which I’ve accomplished nothing – often not even getting out of PJs.
To manage sleep, I must always address the pain I’m in at present: heating pad in the right spot, pillows propping the best ways, and ice in place on my head.
I dread the pain and exhaustion I will wake up with. The uncertainty – will tomorrow be like today – pain, disappointment, dragging my butt around trying to get SOMETHING done – maybe put away some clothes or straightening a room, run an errand to UPS, work my biz … in between flopping around like a dead fish in my bed for essential rest and recovery.
My RA has been flaring – a couple of days ago, I tried to pick up my mug of coffee, and my hand failed… coffee flooded everywhere. And it made me so sad. This was a new and awful experience for me. And I was mentally broken cleaning up the disaster of a “hand fail.” And, of course, since my new Neuro switch, I’m 2 weeks late on my #BotoxforChronicMigraine so – yeah, my migraine has been a bastard.
I work hard on granting myself and my body GRACE as I lie here, trying to fall asleep: my hands and feet ache, my head hurts, and my lower back pain and sciatica are screaming. Every muscle and joint is impaired.
I know oblivion will eventually come. And I’ll sleep. And I’ll dream. But then I’ll open my eyes up in the late morning to another day of chronic illness and pain. And I’m anxious about how hard it will be.
Another joy chronic illness has poisoned. A small prayer: may we all have a good day tomorrow. 🙏🏼
Chronic illness and pain is stupid horrible. I don’t know why my RA is flaring… is it the change of weather? The tiny joints all through my hands and feet are screaming. My head has a frightful constant ache.
Today is a day to rip off the calendar, crumbled up and throw away. Ice on my head and heat on the back. I don’t have enough pain medications. Maybe I could take an epsom bath and just go to sleep…
This is what I normally look like…
I don’t want to do anything exciting like walk, shop or take a trip. With chronic illness, I just want to be able to clean my house, make a meal, feed my dogs and make my bed.
But I can’t get out of bed to make it. Bonnie licks the salty tears off my face.
Truth is humbling and embarrassing. You get it when you *get it.*
I remember in my later 30’s when I felt my normal life slipping away, a Saturday where I suddenly could not complete my weekend to do list – collapsing in bed face first I wailed dramatically to my Marc: “What is happening to me!?”
Piercings with my girls today! I love a piercing to represent each year I have been chronic… my little way of making an Invisible Illness, visible.
Most birthdays just melt right into the next… but I was hoping 50 would stand out. Lol. That’s for sure! Here’s the story:
We’ve been a little sick for a week: runny nose, cough, scratchy throat. Covid home test neg! Fever started yesterday. I thought Marc was silly for testing AGAIN this evening.
So THIS was a SURPRIS-O for sure!
So we decided to head to the ER for some treatment… both of us in our 50’s and me with my chronic conditions and compromised immunity…
Off to the ER for COVID19 treatment! In my silky PJs and felt clogs…
No wait at the ER and nice staff. They swabbed us again, took brief histories and agreed to prescribe Tessalon Perles and Paxlovid! Hooray! Now to find a 24 hour pharma WITH some Paxlovid stock! (Joe only purchased 20 million doses for the country!)
The ER staff informed us that the Walgreens at William Cannon had stock yesterday… so we called to check while driving there and – YES! They had stock!
Strange things afoot the Walgreens at William Cannon Saturday at midnight
Script filled in 30 min and we were on our way home to start our antiviral!
The couple that COVIDs together…❤
Our symptoms are pretty mild, compared to some influenzas I’ve had in the past. Sense of smell and taste intact. Guess it was only a matter of time before we got the Rona. Maybe our vaccines and booster is helping but I can’t WAIT for the next Gen of vaccines, personally. Although we’ll have Natch Immunities now which will be awesome! We’re taking zinc, vit D and baby Aspirin, besides Loratidine, NSAIDS, and nose sprays.
Most birthdays just melt into the next! This one will be memorable!
Marc had our yard carded for me! These were taken before we were covid pos!🤣
mybeautifulmigraine 