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

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

Posted on by MyBeautifulMigraine

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 ordered me 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

Posted on by MyBeautifulMigraine

I am Home.

Now to climb.

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 will do 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 suit
Smiles 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.

Cheers & best wishes to healing, All!💓

#ChronicIllness #ChronicMigraine #RA #RheumatoidArthritis #ChronicIllnessTravels #careerwithChronicMigraine #professionalpatient #careerwithChronicMigraine #cabi #cabistylist #cabifashionweek #cabifashionweek2024

Posted on by MyBeautifulMigraine

The Fourth of July – a Migraine Success Story

Every single year… it never fails: major migraine for Independence Day. I don’t know if it’s the heat or allergies, or whatever… a massive migraine for the holiday.

I usually push through until I can’t anymore. For instance, I’ll make it to the family party, but stay home while the rest of the family joins in neighborhood fireworks.

It works. It’s disappointing, but it works. Because my family has a good time while I work with my dumb head.

This was one particularly terrible Fourth of July migraine in ~2014. I was clinging to my Marc at the holiday pool party. My migraine was so severe, I was was firework-ing in my brain and nauseated beyond belief.

So it was a great surprise that this Fourth, I woke without horrendous head pain!

Marc and I leisurely got ready to attend a neighborhood celebration. We were so looking forward to seeing and celebrating with dear friends.

As the hours passed, I continued to marvel at the state of my low/no migraine. Where was she hiding?

We arrived at the celebration at about 4. And still was nearly migraine-free. We so enjoyed the party; I only had 2 glasses of wine – because I wanted to play it safe! And I had so much fun connecting with and enjoying sharing with friends!

I am so blessed with amazing neighbor friends who understand my health issues – and they seem to like me anyway! How do I know this? Because they continue to invite us to their parties – even though I sometimes can not attend due to migraine.

We stayed a few hours and got home in time to enjoy the neighborhood fireworks from our back porch.

And there is was! A true WIN! And we went to sleep after a very, very nice holiday! #winning and #grateful!

Posted on by MyBeautifulMigraine

Speak your Migraine

What’s worse than #ChronicMigraine?
…when, despite treatments & medicines & rest & planning, I simply can NOT “power through” and do something I really, really, really want to. I simply can NOT get out of bed, not even crawl to an event I committed to & was looking forward to.
I am just so sorry… and just so sad. All I do is let people down. Why would anyone want to be friends with someone so unreliable, sick, and …absent? It is terribly embarrassing and isolating. It’s just a shadow of a life.
I am just so sad. So sad …and so sorry.

Posted on by MyBeautifulMigraine

Holy Migraine… and Painsomnia!

You know those migraines that remind you that you’re truly a migraineur? Like, all along you’ve been getting regular migraines and suddenly a whopper imbeds itself in your brain? And you have a sudden realization: Damn, Batman, I really am a Chronic Migraineur!

Today’s has been swinging with a gut punch all the day long: I woke at about 11 am with her. She’s taken state in my right frontal lobe – deep. I’ve had a myriad of well-wishes: Is your botox working yet? (Administered 5 days ago, 37 days late of treatment date). And it makes me feel awfully sad to answer honestly: Thank you so much for asking, but, nah, my head is just a bear and botox normally takes a week or two to “kick in,” and I’m so late on treatment that I don’t anticipate I’ll get the same kind of response as usual… botox is cumulative; I’ve got to get into normal on-time treatment, so I anticipate I won’t see real relief until closer to my next treatment in September, God willing. It is genuinely touching that so many people have followed my trials and followed my advocacy. So very heartwarming. The world is full of good people and kind souls.

I stayed in bed today. I changed my head ice wraps every hour. I rotated my medications, but did not overload. I found the most relief with that one med we Chronic Cats are not supposed to use anymore due to high incidence of possibly causing rebound migraine.

But darn it all, if Fioricet isn’t the most reliable medication! I can count on it, working almost 90% of the time! Maxalt works about 55%, Ubrevly about 60%, Reyvow (still assessing this one since I haven’t used it that long), about 60%.

When I had some relief, I was able to work on baby shower plans, help my husband with honey-do items, and cut his hair! Saucy!

Today’s migraine has been brought to me by extreme weather heat, allergies, and a fun 1.5 hour dinner last night with friends in a restaurant! My husband and I are working intentionally to foster our relationships with dear friends: not only are our friendships too precious not to nurture, but it gives me the amazing treat of dressing up like a human being, relishing our Empty Nest phase, socializing and enjoying a nice meal – the leftovers I can eat for days! Such a major WIN for a Chronic!

I also had most of a gorgeous frozen strawberry margarita – and alcohol certainly makes my migraine events worse.

So now… it’s 4 am and I cannot sleep due to Painsomnia… I’ve taken appropriate medication, have my green light on, and I’ve fired up the Cefaly. Hoping this will put me to sleep… healing sleep.

And I will probably over sleep tomorrow. My husband will wake up at 8, feed the dogs, make coffee, get ready, and give my head a tiny kiss before he heads out to a day in the office for work. I’ll find a cool cup of coffee on my night table when I finally open my eyes and rub away sleep. He is truly the best!

Will I wake up without migraine tomorrow at about 11 am? Will I be able to get dressed and made up while enjoying my favorite podcast? Will I be able to work my biz a little? Work on the baby shower a little? Clean the house a little? Oh what a glorious accomplishment that would be!!!😍 With or without migraine, that would be glorious to have the energy to be that productive!

I’m going to sign off and try to sleep with my zinging and intensly tingling Cefaly and try to sleep now! The TV is on with only the faintest white background noise, and a #BOTOXforChronicMigraine commercial was just played. Oh, the very ironic anecdotes of my Chronic Life!

Peace and love to all who struggle daily! Keep fighting for a Life to Live!