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.
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.
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.
Haven’t really blogged in awhile. I have so many ideas for pointless storeytelling posts. And maybe someday I’ll get them to print. Once… not too long ago, I fancied myself an #AuthortAt49. As my present age of forty-nine is nearly sunsetted, it’s a fact that I’ve done the leanest writing in my life.
The amount of #sucking I exude… emanate… radiate… is dangerously toxic. Run away. RUN. AWAY. Far away. Run fast. If you come into contact with me for more than 15 min, take a hot shower and scrub with lye.
There’s a song for that:
With a taste of your lips, I’m on a ride
You’re toxic, I’m slippin’ under
With a taste of a poison paradise
I’m addicted to you
Don’t you know that you’re toxic?
And I love what you do
Don’t you know that you’re toxic?
It’s Britney, britch..
So why the Diva Donna Sound of Silence? Too much to write about… ✔ plenty of time to write….✔complete lack of motivation… ✔ unsual, nonstop, under-controlled PAIN and symptoms… ✔
10 min mailpod trip today = 25 spoons, capital I do not have
I spend normal waking hours professional TV watching. And literally writhing in pain in bed, doing the RA Weird Bed Stretch, sleeping ungodly amounts of time. Tears… and more tears. Drip💧 drip💧 drip💧
I’m just BARELY existing. Have been coughing from allergies since November (inhaler, nose sprays for treatment). Bizarre sky high BP for a couple months (~150/95)
My doc and I have decided on some changes- including switching from Loratidine D to just Loratidine.
It’s pretty obvious I will have to go on a cardiac BP migraine prevention med again – I was on Nadolol for years for migraine prevention. It never did shit for migraine but I wasn’t hypertensive then. And now my migraine clusters feel very related to my high BP. And I cough with allergies… and crap, my head explodes with pain with each cough💥 cough💥 cough💥
Please no more. The tears start and they don’t stop. I’m crying and crying.
Marc and I quibble and argue about stupid stuff. It’s the same circular train. 1) “Money is tight,” states Marc. Translation: Donna, you literally contribute NOTHING to the marriage & our children’s lives. You’re worth more dead than alive. Strangely and for no reason that I can connect, this conversation and translation leads me to become silent and distant. Kind of like I want to walk off the nearest 55 foot cliff to my death. The next part of the part of Marc’s conversation is, 2) “Can we never TALK about this without you getting upset?” Marc bewildering asks. Not a prob; let’s just get passed the next sentences of me being a big fat burden so we can talk more about not spending money. Which I think we already discussed? Because this is a conversation we’ve had for the last 22 years. And, frankly, it’s BORING. It’s tiresome. And the same exact conversation. And round and round the train goes…
Blah blah blah blabla blah blah
Don’t mind me… I’m just existing in bed 23 hours a day. Vegetation grows inside me, replacing my vital organs… vegetation alongside me, roots form and burrow underneath me, replacing my veins and growing into the mattress, my wings are broken, they are ripped out of their sockets and hacked to bloody stumps. I am a plant stuck. Joy is waning, Joy is untouchable.
As I’m existing here… I lay on my right side… head propped on soft pillows, slice of pain starts at the top of my right head and travels down to my ear. There is a flowering of some beautiful pain in my right temple. My hands hurt… it’s like on a cellular level… the cells of my hands and fingers hurt. How dumb is that? The same cellular pain is in my feet… their joints, and muscle tissue. If I keep them still, maybe I’ll notice it less. The pain up my right thigh and lower back is different and more intense. But overall, there is this covering… like a web or large linen cloth – it envelopes my entire non-ethereal person. It is so present… it reminds me I cannot move… I cannot breathe… there is no me, only a linen sack of body. The tears drip out of my non-ethereal eyes. Drip💧 drip💧 drip💧 Flow. They’ll never stop. All Joy is gone. I’m alone in The Dark Hole. People I loved have left me, turned their backs on me. I can scroll my contact list and it is full of strangers and people I only used to know.
At present, Ukraine is being bombed to rubble. One day Ukraine is wining the war, the next day Russia is. My fav journalist Ben Hall has lost limbs but is alive. Biden says you can’t buy a cannon. Kamala is under the spell of the Significance of the Passage of Time. Boris Johnson (PM UK) toured Kiev with Volodymyr Zelenskyy (Pres Ukraine). Optically, it looked majestic. My dearest niece in law (42) just lost her little bean baby… an IVF baby 11 weeks whose heart stopped beating. Her D&E was Sunday. Courtney rolled her ankle and is in a boot for weeks. I don’t know if Corey is ok. I don’t know if Nick is ok. Robyn seems ok. She broke up with her new boyfriend a couple of days ago and is sad. Courtney’s bestie broke with her BF after 7.5 years, and she is hurting. Sue sends Dave letters showing she is still firmly chaining herself to her personal constructed Hell Loop, and I can’t even imagine the PAIN she is creating for herself. She holds the key to her release but won’t release herself. Eric Adams (mayor NYC) has pulled down the mask mandates EXCEPT for children 2-4 years old. Those babies may not even be potty trained (and certainly they are NOT spreading covid), but they must wear a face mask. I can get another covid vax booster, but I don’t WANT the SAME vax – I want one with updated strains, for crissake. In Florida, insane people don’t want a law passed that doesn’t allow sexual/gender discussion in K-3rd grade. Disney is at war with Ron DeSantis. There’s been a terrible shooting in NYC subway – shooter is not caught yet. China is shutting down for a new strain of covid… yet there has been one death. The world is in ruins. Like the rubble and ruins of Ukraine. There is no Joy. There is only great Sadness. I’m losing friends… I have nothing to give…. my circle of Life closes in, and I’m fashioning myself a Recluse. I used to always be sure in the bond with my husband. Just a few days ago, we were holding each other. And now…
There’s a little black spot on the sun today (That’s my soul up there) It’s the same old thing as yesterday … I have stood here before inside the pouring rain, With the world turning circles running ’round my brain, I guess I’m always hoping that you’ll end this reign, But it’s my destiny to be the king of pain.
I never realized my hands could hurt this much. This is Rheumatoid Arthritis. My hands don’t look that strange – they look kinda normal.
But every bit of them is Pain. Even when they aren’t moving… or doing anything. There is Pain in each little joint. Pain in every small muscle. They feel bloated and large and foreign. How can every bit hurt? How is it possible?
Rheumatoid Arthritis creeped into my life. Slowly. Stealthily. It didn’t arrive with an announcement. It was like a sinister villain who started tiny and grew.
Why had I stopped using my favorite knives to chop and cook? I couldn’t remember. Why was I no longer attending my roses? I couldn’t remember. Why did I no longer use a keyboard to write? I couldn’t remember. Why did my hands and feet swell and hurt so frequently? I would have to sleuth out the reason.
I was diagnosed with RA in the summer of 2013. But as I look back, it had been showing its face and creeping into my body and life at least in 2010.
My rheumatologist would later praise: we caught this early. That’s really good.
But it doesn’t mean RA goes away. She’s here to stay. She is a permanent resident. She can go into remission. She can flare. She can be tucked into a corner or scream and tantrum for attention. She’s part of me and we learn to live together.
mybeautifulmigraine 