Posted on by MyBeautifulMigraine

One Migraine Story

Sometimes there’s a Happy Hour school parent meeting you want to go to on a Wednesday evening… you already have a low level migraine, but a cherry limeade cocktail🍹 with other parents sounds wonderful. You know this will make your migraine better for a moment and then worse later. Although sometimes it won’t.🤷🏻‍♀️ It’s a toss up and it’s worth it because community and friends are worth hurting for.😍 You have a wonderful time, meet new friends, connect with others.

Pretty drink: Tito’s vodka mixed with Sprite and cherry. Normally, high-end hard alcohol will not trigger migraines for me. But if I already HAVE a migraine, it is not recommended.

Although you’re invited by a small group “to keep the fun going” and have dinner at a nearby restaurant, you sadly know you must decline. You’ve not taken your sunglasses or hat off for the entire meeting. And you know you’ll already be paying a price for the 60 minutes of friendship you’ve just enjoyed. Chronic Migraine demands a high price. Always.💰

So you go home. And you take your medicine like a good patient.🌟

The next morning is bad. Higher level migraine. You’re up for just a few minutes to kiss your daughter🙎🏼‍♀️ goodbye as she leaves for school🏫, make coffee☕ and feed the dogs.🐕 You cannot remain on your feet with eyes open – the migraine is too much. You take your medicine 💊 and encase your head in ice 🧊 and climb back into bed, hurting.

A few hours later, you wake with a start: SURPRISE – you’ve slept for 4+ hours, your migraine is lower, but still present, and you have your ESSENTIAL Botox for Chronic Migraine appointment in one hour! It’s a half hour away. You can make it, but it will be casual doctor appointment dress day🙂

#WaitingRoomShoePic in the car! Covid protocols

The appointment takes only 15 min and nearly painless despite 40+ injections in shoulders, neck, occipitals, temproals, forehead & jaw.💉 It’s pleasant seeing your neurologist this day. Even though last time (12 weeks ago) she was cranky & made you super sad😢. Covid precautions in place at the office, you’re screened before entering exam room and there are only 2 employees in the building (including your neuro) so there’s no waiting. The botox “wheels” have even started to disappear 7 minutes after the injections.

Just 7 minutes after procedure. Some botox injection “wheels” are visible with blue asterisk. Red arrows display the reddened area of my forehead which is not related to botox, but instead is a symptom of my migraine.

This is a sacred appointment… you never miss the day and have been in botox therapy for #ChronicMigraine for a decade. Your next appointment will be early January and you’ll be required to pay the full 2k since your deductible will be reset for the new year.🥂 You’ve already started saving for that. Today’s appointment is 100% covered.🙂
It’s helpful sitting in the car🚗 a few minutes after your botox treatment to settle your body after the barrage of injections💉💉💉💉💉, collect your thoughts and physical well being, and even document your story.✍

You’ll drive home now. Get more ice❄ for both your forehead and back of neck occipitals, rest in your bed🛏 with your head elevated, and maybe even sleep.😴

Basically the day will be done, even though it wasn’t much of “a day” at all. But you did “a thing” and now you can not do anymore “things.”😔

This is one migraine story. One story. Just a glimpse of one – not the entire story. With migraines almost every day, it hardly seems believable that you have about 18 of these stories a month🗓. Many people won’t understand what you’re talking about when you mention Chronic Migraine – they will find it nearly impossible to believe it can happen so frequently (because they had a migraine and they were incapacitated). There will be people who tell you they are “in awe of your strength.” And you’ll be grateful, so grateful, for their kindness and support. But you won’t feel worthy of their praise. You won’t feel strong or inspiring. You’ll feel tired, so so so tired. And you’ll feel so sad that you physically cannot do what you want to do, or what you used to be able to do. You’ll feel so frustrated that you let people down, can’t care for your family like you want to, sometimes can no longer work your career. You’ll battle depression and so much anxiety, because you will never know when the migraine will finally end, and you will have no idea when the next will strike. You will lose the ability to be reliable – you will need to cancel events you really want to attend. Other events you can not miss – you’ll need days and weeks to physically prepare for them. You’ll have a love/hate relationship with medication – because it sucks, but you’ll need to carry it with you at all times. You’ll spend countless hours in a dark room alone and isolated.

And this – this is the story of one migraine.

Covid precautions are not stopping botox treatments AT THIS TIME in Austin, thank goodness!

* * * * * *

Botox for migraine has been FDA approved since 2010 for Chronic Migraine, which is defined as 15 or more migraines a month for at least 3 months. Insurance will want to see you’ve tried cheaper preventatives before approving botox (anti seizure medication like Topamax, cardiac medication like Propanolol, anti depression medication like Amitriptyline) In my humble opinion, it is THE most effective preventative migraine treatment to date. It is administered every 12 weeks. It is a cumulative treatment, so the more you get it, the better the results. Migraine sufferers have varying results, but insurance providers prefer at least a 40% improvement to continue paying for treatment. After some insurance finagaling, your insurance approval will allow for 3 consecutive treatments before reevaluating. It is important to allow yourself those three treatments. Botox is rarely a “magical juice.”

For me, it makes my migraines more responsive to medication, it decreases the severity and duration of my migraines. It does not change the frequency. I still migraine almost every day. Botox injections are normally pretty painless. Although that may be dependent on the syringes used and the administrator’s experience. Most injections are painless, some uncomfortable and some as painful as a slight bee sting. Some injections close to your ear, you’ll be able to hear a “crunching” noise as the tiny needle breaks the skin. Botox is injected juuuuust under the layer of skin – very shallow. It targets the muscles exacerbated in migraine. Because it is injected directly into the muscles, it is unlike most migraine preventatives that are taken orally or systemically and require metabolism in the stomach, liver, etc. For this reason, there are very very few negative side effects to botox. In ten years, I have had one small bruise and one left eye droop, both resolved in weeks.

It is important to take note your anxiety with botox. If it’s your first time, you may be very nervous and it may be helpful to bring relaxing music for earbuds. Also, icing the areas on your head (both before and after) will help with any pain from injections you may experience. Remember that even if the experience is not painful, your body has been assaulted with many tiny needles and you may experience a systemic body response. I used to go straight to work after injections, but now, I feel I have to rest. It often triggers a feeling of malaise and/or migraine, which resolves in about a day.

It’s important to remember not to apply pressure to the injection sites for approximately 12 hours post procedure and plan on some rest post procedure as well. Use ice for any irritation. Elevation of your head also helps the botox absorb effectively.

The general botox for migraine “map:”

After years of working with my neurologist, we have come up with a “personal botox map” specific to my needs.

I strongly recommend every Chronic Migraineur at least try botox as a preventative with a certified botox for migraine provider, if it’srecommended. It is worth the try! And it is nothing to be afraid of.😊

Posted on by MyBeautifulMigraine · 1 Comment

A NEW CHAPTER, by a Baylor mom

This was on the Baylor Mom’s Facebook page. She nails it.

I watched him walk away as a single tear rolled down the side of my cheek behind my big sunglasses. The soul-crushing sadness washed over me. He turned around one last time before entering the building and gave me a small, sad smile.

My heart was in my throat. I wanted to run to him and hug him and never let go. There was so much I wanted to say . . .

I wanted to tell him just one more time how much I loved him and how proud I was of all that he has accomplished.

I wanted to tell him I was sorry for all the mistakes I had made as his mother. I tried my best, yet there were so many times I struggled and felt as if I had failed him.

I wanted to remind him to make good choices and have fun.

I wanted to tell him to find his tribe of friends that will last a lifetime. The kind that will tell you when you mess up and stand up for you at your wedding and love your children like their own one day.

I wanted to tell him to be careful, to wash his sheets and to never get in the car with someone who had been drinking.

I wanted to tell him that I believe in him and pray for all of his dreams to come true.

I wanted to remind him to be kind and respectful and help others.

I wanted to tell him to be humble and honest, to work hard and dream big.

I wanted to tell him to study hard and do his homework and not to eat pizza every night.

I wanted to remind him to clean his toilet and brush his teeth and clean the lint out of the dryer vent.

I wanted to remind him to turn off the stove when he was done cooking and never leave popcorn unattended in the microwave.

I wanted to tell him to sit with the lonely and stand up for what he believes in and to stay true to himself. Be real. Be authentic. Be you.

I wanted to remind him that God is always with him and to let God’s light shine through him in all that he does.

I wanted to tell him to have a blast, take risks, be bold and adventurous.

I wanted to remind him that no matter how big he gets, I will always be his biggest fan.

But I didn’t say any of those things to my son. Instead, I mirrored his small, sad smile and waved good-bye as I watched a piece of my heart walk away . . . to start his new life at college.

I closed my eyes and took a moment to embrace this overwhelming sadness in this bittersweet moment, marveling at how I could feel so lost yet so proud at the same time. At this point forward . . . life will be different. Not bad, not worse . . . but never the same again. It will forever be coming and going and no longer staying. It will be recognizing that my son is now an adult and is in charge of making his own decisions. It will be taking a step back . . . no longer a caretaker in his life, but yet always there for him if he needs me. It is letting go of that little boy who loved Ninja turtles and Legos and embracing the man that he is now. He is ready and this is his time to grow and shine and learn and thrive. As a mother, you spend your whole life preparing your child to leave you and when that moment comes, it’s heartbreakingly amazing and awful at the same time.

As we make the long drive back home, my heart just aches. I know it’s okay to be sad. It’s okay to admit this is hard. It’s okay to have a good cry. But I also know that I can’t stay in this place of sadness. I have to put on my big girl pants and wash my face. I have to thank God for this glorious gift of motherhood that is both hard and beautiful. I have to keep moving forward with hope and gratitude for each day. I remind myself that I can do hard things.

And I know I can because that is what motherhood is all about . . . surviving the hard and loving boldly through all the messy, all the ordinary, all the beautiful, heartbreaking moments. I’ve been doing this since the day he was born and I will continue to do so in this letting go season. And always, I will thank God for my son who will forever hold a piece of my heart.

When we finally get home, I realize that I did it . . . I survived college drop-off which is a day I had been dreading for years. And I notice that my sadness has been replaced with a feeling of excitement and anticipation because I am already looking forward to that day when my son comes home and walks through my front door again.

And I smile sadly as I realize that a beautiful, new chapter of life has begun . . .

My own “babies” spread their wings:

Posted on by MyBeautifulMigraine

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.

Posted on by MyBeautifulMigraine

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.