So damn hard

Today was July 29. It was a Wednesday. It was in the 90’s. It was sunny with some clouds. My husband worked virtually from home, as per coronavirus shutdown since March 18. My three kids played video games, went food shopping, made dinner, cleaned the kitchen, got the mail, took out the garbage and fed the animals. I saw them briefly, waved and greeted them with a big smile. I puttered: I showered and dressed, I binged Netflix, I worked with ebay and Amazon returns, I ran several college prep loads of laundry and tried to get some supplies organized for the 2 college boys. I made only the most minimal prep done.

But today… every second was painful. Beyond painful – that’s an inaccurate description. My hand and feet joints are screaming, every movement sent my lower back into theatrical spasms, even lying in bed, my sacroiliac is off the charts. I had my massager running all day long. But then there’s my head… it reminded me of hangover x10. The pain was not so high, but the symptoms? Ridiculous. Vertigo, nausea, so hungry, vomiting, dull and burning aching head pain, exhaustion, depression, difficulty focusing my eyes, brain fog, photosensitivity… just a large lump of no energy pain flesh.

I can’t believe how colasally BAD this Tuesday was. I spat out a couple brief texts in responses. I answered a couple FB posts. I couldn’t sleep… just laid in this soft bed prison, while life passed by.

I pissed and moaned. Marc would say he was so sorry I was feeling so badly. I would say I’m so sorry I’m complaining all the time. …and then I would begin the weeping and moaning all over again.

It’s now Thursday, the next day. July 30, 0100 hours. Time for sleeping. Lying on my side with 4 pillows, 2 heaters – on my right upper thigh and lower back. Fresh ice on my throbbing head – the pain is stinging in the left temporal. I have a second ice on my jaw. My hands are hurting. My feet are hurting much more – can you BELIEVE how many tiny joints there are in feet?? Believe me, I FEEL every single one. My piriformis’ are aching like crazy – and symmetrically – which is odd, if not interesting. I am waiting for medicines to kick in: there’s Phenergen in there for nausea and migraine. There’s some tizanidine for relaxing these screaming muscles. And there’s other stuff.

It’s hard… I’m trying to stretch, calm my aches by deep breathing. I think I may be starting to relax. I could find oblivion… and shed this insane pain for a few hours.

And maybe Thursday will feel better? A new day would be great. Because if someone took me out today, I just don’t think I’d complain.

Today. Living was So. Damn. Hard.

Nurses – Sean Dietrich

BIRMINGHAM—I saw you in the Publix parking lot. Your car’s gas tank lid was open. I wanted to tell you. But you were busy.

You were wearing nurse’s scrubs, a hospital badge, and you were changing your baby’s diaper in the backseat of your car.

Your other toddler was watching you have a meltdown. You looked like you were about to cry behind that surgical mask.

Right now, I wish there were a machine I could hook to my chest that would print onto paper the words inside my heart. I’m not always great with sentences, but I have a lot I want to say. Such as: “thank you.”

If you are a nurse, I can only imagine how tired you must be. I can’t begin to understand what nursing is like these days.

Alabama’s COVID-19 cases are on an upward rise. People are dying each day. And, well, I guess nobody knows this better than you.

You’ve probably been working yourself raw, pulling double shifts, seeing the horrors firsthand. And somehow, after you clock out, you still manage to do the grocery shopping, to pay the bills, and to change your baby’s diaper in the backseat.

Maybe you feel overlooked, a little invisible, and underappreciated. Maybe that’s why you’re so upset. Or maybe you’re overwhelmed with life right now, wondering if what you do truly matters.

You probably view your life the way everyone does. You see yourself going from Point A to Point B, doing your work. No big deal. You’re just one nurse among millions. If you don’t do your job, someone else will.

But you’re wrong. And it’s not just your job that’s important, your life is important in a way that you might never fully appreciate.

This is going to sound silly, but have you ever watched someone knock over a bunch of dominoes?

A few years ago, Liu Yang broke the world record for domino-toppling by setting up and knocking over 321,197 dominoes in Beijing. (I’ll bet he’s fun at parties.)

Yang worked for a month to set up his dominoes just right, painstakingly placing each one where he wanted it. He literally constructed an entire universe of dominoes.

Experts say that if Yang would have removed just one domino from his enormous design, the whole thing would have never worked. But it did work. Every domino fell in its choreographed sequence, and it was a record-breaking success.

That’s you. You’re a domino within a chain of 7.3 billion dominoes on this planet. You will never see most of us other dominoes. You won’t even know we exist. But without you, our lives wouldn’t be the same.

So I know you’re probably worried, mad, scared, depressed, overworked, underpaid, exhausted, and wearing thin. I know you are on the frontlines every day, treating fevers, administering meds, and—I can hardly bring myself to say it—removing urinary catheters.

I have a friend who is a nurse in a large hospital. She tells me that the hardest part of nursing is wondering if anyone sees you. Maybe you feel that way.

Does anyone see the trouble you go to? Does anyone ever tell you, “good job?” Will anyone ever understand the abuse nurses go through when patients get ticked off? Can any person ever realize how hard it is to raise kids while tying down a full-time job?

Probably not. But one day I believe you will look backward upon your own life and you will be shocked at how important your role was in this big mess.

It will be a subtle feeling that overtakes you. A feeling of achievement that will fall on you like an afternoon drizzle. You will have a deep joy in your stomach, one that’s powerful enough to knock your heart out of rhythm.

Maybe it will happen over supper. Or during a movie. Or at your son’s high-school graduation.

Maybe you’ll be watching him in his long gown and square hat and you’ll remember the night you once changed his diaper in the backseat. The same night you were tired from working an all-nighter.

Maybe it will all remind you of this troubled era we live in, back when COVID-19 was tearing at the fabric of society. Back when our world was stunted.

On that fine day your whole life will come back to you. You will remember all you did in the heat of battle. You’ll remember coming home from work late, the tears from exhaustion, the patients who died on your watch, and those who survived to bless you for it.

Your kids will be grown, and by then, the world won’t even remember how to pronounce the word coronavirus. We’ll have new troubles, and newer problems. But you will still remember.

Your hair might be gray then, and your joints might hurt from a lifetime of shuttling patients into hospital beds. But it will be the greatest sensation of your life because you will realize how much you contributed to this earth.

And you’ll realize that this beautiful, messed-up, weird, scary, but exciting experience we called life was made lovely because you were part of it.

I wish I could have told you this in person, but it would have been too weird, since I’m a stranger. Besides, you have much bigger things to worry about right now. Like babies. Groceries. And saving the entire world.

Also, don’t forget about your gas tank lid.

When Migraines Age Us |

Oh, Holly. You and I share such a similar story.

“I gave every ounce of my well-time to work (which had dwindled down to a few hours a week) and the rest of my life was spent in bed.”

“It quickly became clear that my migraines were a daily reality, regardless of where I was or what I was doing during the day. They had not appeared due to my stressful job, but rather because of my biology. Like many women, my migraines transitioned from episodic to chronic as I entered my forties.”

#ChronicMigraine #migraineawareness #MHAM #MHAM2020 #migraine #cma #cmaware #InvisibleIllness

8 Reasons Not to Ignore Episodic Migraine |

Please read this one. It’s so important to understand the difference between EPISODIC and CHRONIC. In Migraine World, they are 2 totally different animals, even though the migraine part is shared.
How does one slip from Episodic into Chronic? One of the most common reasons: INADEQUATE TREATMENT.
Many people are or love an Episodic Migraineur… this advice can save them! 💜

Life Portrait: Episodic Migraineur

And my life started to warp… to change. It couldn’t really be happening, could it? Keep going… keep “dancing” as fast as I can… I don’t have time for this – whatever this is. Throw back ibuprofen, ignore it, power through, your children/family/job/friends need you… smile, through back tylenol, one more step… just one more step… keep going… throw back ibuprofen. I’m fine. Because I have to be Fine!

Until… I’m quite sure I am not Fine.

Life Portrait: Chronic Migraineur

Learn. Seek treatment. Research. Find others. Hunt medical professionals who listen, work with you, are knowledgeable, and understanding. It’s a lot of work. And you ARE worth it. When one doctor doesn’t work… find another. If that one doesn’t work, find another. There are good ones out there.

Allow yourself to feel… to process, to grieve, to grow. Treat yourself as carefully and lovingly as you would your child. Advocate for yourself. And know… you are not alone. #youneedcommunity

#ChronicMigraine #MHAM #MHAM2020 #migraineawareness #Migraine #cma #cmaware #episodicmigraine #rallyagainstchronicmigraine

Show you care; wear a pair. #MHAM2020

Migraine Awareness Month and I’ve barely been posting. Covid quarantine plus much migraine activity plus just not feeling well… at all.

I stay in bed … a LOT. My family is nurturing and wonderful and also taking it easy themselves.

#ShadesforMigraine #ChronicMigraine #MHAM #MHAM2020 #youneedcommunity #migraineawareness #Migraine #migraineart #cma #cmaware #mybeautifulmigraine #rallyagainstchronicmigraine

Digesting the social unrest with the vicious and disgusting murder of Mr. George Floyd, the protests, the riots, and the ridiculous and rampant political hate. Everyone believes the same thing, but if you don’t say the ‘right’ words or wear/don’t wear a mask, you are screamed at for being a murderer and racist. There are about 20 idiots in America that are truly racist… but if the rest of us use the wrong wordage, we are screamed at, spit at, called horrible names. “Shut up. Listen. Fight for change. Ask for forgiveness for White Privilege. Don’t ask questions. It’s not about you – you don’t understand.”

So. Much. Hate.

I don’t recognize our country. We are broken. On fire. It’s so painful. And divided – when we need to be united.

I’m trying to learn the politically correct wordage. I’m listening. I am asking questions… that’s how I learn.

But I’m continually sending out my LOVE. No matter how much hate I get. I only have room for LOVE

King lays out in “Loving Your Enemies” echoes through all of his speeches. Furthermore, it is the message upon which he built his life—that love is “creative,” and that only love is capable of transforming hate into love. Therefore, to change the world, love has to be extended to everyone—even to our enemies.

Migraine Disease is Legitimate

I won’t sugarcoat… there are moments I begged for a bullet to the brain pan and many times a powerful crowbar strike to the side of my head; I couldn’t be strong anymore. It comes off like I’m kidding. I’m not kidding.

I’m fond of the statement: Tomorrow will be a better day and I have to believe it.

I have never expected the world to change to accommodate my disease, but having a COMMUNITY of support from advocates and other people living with Migraine Disease has made an immeasurable positive difference. I was so alone… and I’m not alone anymore.

Your body has the flu… your head is mimicking Krakatoa… you have stomach flu nausea and vomiting… the world is spinning… light and sound slice their knives into your eyes and ears… and you’re overwhelmed, completely overwhelmed with unspeakable sadness as you’re rendered useless to do the basic jobs you love: care for your family, work your career, enjoy you’re life.

#ChronicMigraine #MigraineAwareness #MigraineAwarenessMonth #MAM2020 #youneedcommunity #MHMA

Mother’s Day and okay

Today I woke up at 08:30. My eyes just opened on their own – no alarm. My sacroiliac was troubling so I thought to take my medicine to get on top of the pain. I can just reach over to my mini pharma night table and grab my dose and sip of water. Settle back and let it work.

I climbed out of bed at about 09:15, disentangling myself from king-size heating pad cords. It’s Sunday, Mother’s Day. I don’t have anywhere to go, but I got out of bed anyway. Because I could. I felt “okay.” Internal body scans revealed most trouble areas were in check.

And because I was okay, I went into the kitchen and fed the dogs. And then, because I could, I cleaned up the kitchen: counters, dishes, appliances – everything was left the night before at the usual level of mess. It was my son’s job to clean up and he did – mostly. About 75% of the job is where my family helpers tend to tap out.

I was still okay, so I made coffee. I looked for a few things I’d need today because my other son and his wife are coming over later. I put them aside for them. And then I took a shower. Because I was “okay.”

My daughter came down to feed her cat. She was cheerful and happy to hear I felt okay but didn’t wish me a happy mother’s day. This did make me smile. Lol. It’s not a holiday my husband has put much effort into ever, so I just basically celebrate myself this day. And that’s alright… because everyday is Mother’s Day! And the relationships I have with my children are as sweet and fulfilling as I could ever dream. I love them with my whole heart… I love who they are – exactly who they are – right down to their annoying habits; I have no expectations on who they should be – I love them. I support them. I want them to find themselves and find their passion and happiness – to give and to receive. And they do not have to do anything but be themselves to overflow my happiness cup.

I’ve consciously (and with the help of years of therapy) decided to shed the baggage I carried for years because of my own mother’s inability to understand love and relationships and enjoy this holiday. To her, it was an annual nightmare of tremendous hopes dashed and expectations never ever met. And we were taught it was our celebration shortcomings that made her feel like shit on this day honoring Mothers. She could see other mothers happy and she wanted that. But she couldn’t figure out how to attain it. Never realizing the key was just gratitude. Not a parade, not a dinner or party, not a special gift, not a certain card… none of that could give her what she already had but could never see or feel.

And why should I carry her baggage? Good lord! I have my own luggage to shoulder and Mother’s Day disappointments is NOT one of them! No, thank you!

After my shower I got dressed… no need to lie down and rest in bed. I was okay… and I got myself a cup of coffee and wished myself a Happy Mother’s Day.

Happy Mother’s Day to me!

And to all the Mothers!

Before making up and drying my hair, I decided this “okay” is SO significant that I should check my logs to see when this has happened before.

• Sept 9 and 17, 2019 I also woke up feeling “okay.”

•Before that, it was May 20, 2019 that I woke up feeling “okay.”

That means I’ve had four days in a year waking up feeling “okay.”

That’s pretty significant. When I wake up feeling okay, it brings it home how BAD I feel almost everyday. Most days I cannot get out of bed until after noon. I cannot clean. Every move is a burden. I am literally too sick to function like a human being. I feel 84, not my spry 48 years. Yes, it’s a lot of pain. But it’s a lot of fatigue, lethargy, aching, brain fog, severe malaise, and more.

So I’m sipping my coffee, applying makeup and my feelings are ping-ponging. I’m so •ecstatic to be feeling okay… to have a modicum of actual energy and symptoms under control. I’m also so •validated: alllll those days… they aren’t something I’ve made-up, they aren’t my imagination, they aren’t related to a diet, a supplement or anything I can consciously change… that AWFULNESS is REAL. And that brings some relief to know I’m not crazy… or doing this to myself. Then, the other emotion I have is •sadness: so much SADNESS… 4 days feeling “okay” (please note that I definitely do not feel good – just “okay”)… 4 days in 365 days. How does anyone even conceive about that level of illness, when much of the time, I can pull off looking Normal?

Does this look sick?

I’m reminded of the great love story in Pirates of the Caribbean… Will Turner and Elizabeth Swan… they finally marry but Will is cursed to become the new mythical Davy Jones of the Sea. He can only come ashore and reunite with his love, Elizabeth a single day each decade.

Will Turner & Elizabeth Swan, one of my most favorite love affairs
“My heart… it has always belonged to you. Will you keep it safe?” “Yes.”

Of course… that may be a little overdramatic in comparison. Lol. But as I’m applying eye shadow, I’m thinking of all the incredible things I could do with more “okay” days. I could organize and keep our house clean, read more books, and write more – of my novel, novellas, advocacy work, volunteer for the high school theatre department (they need a part time director), maybe even work a little as a nurse – a phone pediatric triage nurse or a substitute nurse for the schools? I could cook more, exercise more – oh I’d love to take a yoga class! Yoga is my shizzle! I could take the dogs for walks in our darling neighborhood – everyday!

I could garden – I was good with herbs, jasmine and roses. I could plan more events with friends. We could do a family game night every week! How awesome would that be?!

And then… I’m sad again… thinking of all I’m missing in my family’s life. Thinking of the mother my kids are missing, and the wife my husband is missing. They deserve so much more than I can give. I drag them down. Down to Davy Jones’ Locker.

I don’t like to lose my shiny optimism, but it is worth noting that just because I woke up “okay,” it doesn’t mean the reprieve will last all day. Although I do wonder if perhaps my Botox for Chronic Migraine (4/30) and my last Humira dose (5/8) are working and helping me out to “okay-ness?”

Days have a habit of turning on a dime or spiraling downward like tumbling a great long staircase. Tonight may be ice crowns, hot head, screaming piriformis and phenergan. There is no way of knowing – just frequent experience. So for now… I’ll just have my second cup of coffee at noon, make myself some breakfast and enjoy each moment of “okay.”

“They carry me; and with their strength & love, I fly. My All, my Everything.”

#ChronicMigraine #MigraineAwareness #SpeakYourMigraine #ChronicMigraineMother #MothersDay #PainWarrior #Lovemykids

Angels among us and tears, Botox COVID19 edition

There are times in life when a simple thank you is just not enough.

I recieved my botox treatment for Chronic Migraine today… I’m only 17 days late, my regular neurologist is still closed… but friends and a different provider went above and beyond, assisting me to make this treatment happen.

Words of gratitude just fall short. I know tonight’s migraine will be from the grateful Ugly Cry. This world is full of so much kindness. Thank you all for your support and prayers.
#ChronicMigraine #MigraineAwareness #SpeakYourMigraine #BotoxforChronicMigraine #CMA #ARMS #CMAware

My favorite photos: a freshly botoxed head.
I almost did not believe this day would come. This process has been so surreal and emotional: 1) I could not believe my Neuro of 7 years would refuse to perform essential migraine treatments, 2) insurance was a butt and ultimately unsuccessful transferring to new office in any kind of timely manner, 3) I was staggered that another practitioner would go out of her way to help me.

In a world of COVID19, loss, loneliness, chaos, and uncertainty, there are angels among us. Don’t tell me it isn’t true because I have been touched by them. They’ve come into my life: friends who watched and cared for my 4 young children when I had to go to the ER, doctors who’ve held my hand when my baby was hurt, and friends who’ve arranged for another Practitioner to help me with #BotoxforChronicMigraine when my own Neurologist closed up their office and wouldn’t treat their patients in need.

Today I was 17 days late for Botox. In 9 years of treatment, I have never been even ONE day late. These treatments are too critical for me. And Botox is a cumulative treatment. Being late can set you back… like pedaling a bike uphill.

When I put out my open letter to my Neurologist on social media recently, explaining my predicament, heartbreak, and frustration about my botox cancellation, my friends took action. He’s a Pediatric Neurologist and his colleague (who performs botox treatments) and entire office continues to remain OPEN during quarantine. They believe the truth that their treatments and care are too essential. And they are willing to help other Neuro patients – even outside their practice. His wife contacted me with Dr Kate Labiner’s info… she alerted the doctor about my predicament. *cue tears of gratitude*

When I contacted Labiner’s office… they said they were happy to help and they would do everything they could to help me with insurance, payment and appointment times. They were unbelievably kind and gracious. *cue tears of thanks*

Note: I’m a cryer. Happy, sad, funny… I cry. But when faced with grace and goodness… I cry the ultimate Ugly Cry.

The office staff Jasmine and Amanda worked relentlessly on my case… which is difficult – they don’t see my insurance in their pediatric practice and switching the botox authorization from Austin Neurocare to their office was proving to take a LONG time. They didn’t want me waiting and suffering any longer than necessary. Nurse Mary from Austin Neurocare was good enough to fax my info to Child Neurology Consultants of Austin at least.

I opted to pay out of pocket for the visit and injections, for which they gave me a compassionate discount. Dr Labiner also used their samples of Dysport to enable me to get in as soon as possible.

In a time when only patients are permitted in offices/exam rooms, CNCA welcomed my husband to stay with me.

I was emotional to say the least. Their kindness was overwhelming. Whenever I thanked them; they repeated it was their pleasure and they were happy, even thrilled, to help. *cue: tears of grace*

Dr Labiner was delightful… very knowledgeable about Chronic Migraine and we spoke about my history, as well as the CGRPs and overdiagnosis of MOH. Pretty sure she could tell she was talking with a Migraine Jedi. I was able to show her photos of my normal botox “map” and she was happy to follow them. She gave me ice packs and stress balls to squeeze and had me lay down on a pillowed exam table. It made me smile; it was adorable… she counted down before injecting and she asked me how I was doing every so often. I had read up on Dysport beforehand and I did find the injections a bit more uncomfortable (they are slightly deeper, higher concentration where a smaller amount is needed, as compared to botox. And apparently it renders results a little sooner as well.) but totally tolerable. It was one of the most pleasant doctor visits of my life. We talked about her clients… when I think of CHILDREN suffering from Chronic Migraine… my heart can’t take the sadness. *cue: tears of sympathy and heartbreak*

I told her my 20 year old son was an Episodic Migraineur and I would do all on my power to make positively SURE he never become chronic.

We ended the visit with her making sure I knew that I could contact them for help, if needed.

I felt the migraine crashing my skull as we drove home. This is stress letdown. I took my medicine and fell asleep for a short nap (my head elevated). This is emotional exhaustion. This is days and days of uncertainty and anxiety. When I woke up we ate dinner and I cried. And cried. And cried some more. I cried for how grateful I am for this treatment. I cried for all the other Chronic Migraineurs suffering and indefinitely cancelled. I cried for the children who need Chronic Migraine treatment. I cried for my country (and a world) suffering during a fatal global pandemic with a virus that is absolutely devastating that we don’t really understand. And I cried for my anxiety, my mental tension and physical strain, for my stress letdown, and my nasty migraine.

I have my ice on, am in PJs, and go to sleep with a grateful heart.

Peace and Love to All.