Posted on by MyBeautifulMigraine

Shingles. Again. Stop. Listen.

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.

Amen.

Posted on by MyBeautifulMigraine

One thing my NEURO said to me today

I’ve been so blessed to find Krishna Polkala MD Neurology after my neuro of over a decade, Sara Westgate MD retired her practice a couple of years ago. Her retirement sent shockwaves across the Austin migraine community; we’d lost a huge provider. Dr. Polkala did an amazing act; offering to take as many of Westgate’s patients. Not only does Dr. Polkala has a great bedside manner, he agrees to use my own “botox map” that works really well for me. Instead of the traditional neck injections, I get more in my forehead and 1-2 in my jaw. I always joke that I need a “plastic forehead;” most of my migraines are frontal, not occipital. He also is incredibly understanding about how important Botox is for my Chronic Migraine treatment and will squeeze me into his schedule so I’m on time for every 12 weeks. And he will absolutely collaborate with me on my medication and care.

Every Botox day, he asks to see my photo of my “map,” so he can make sure to follow…

This Botox “map” took several years to get right for me. My neurologist and I collaborated for my personal migraine needs.

Today, I brought my Cefaly for Dr. Polkala to test 😁 … to make sure he can truly understand when he makes recommendations for other patients.

I love a great doc!

He needed me to remove it when Cefaly got to its intense level. Lol.

As he was injecting me today, Dr. Polkala said something really special to me: “You know, of all my Chronic Migraine patients, you’re  genuinely one of the most positive patients I have. Some of my patients get mad or irritated at me if they have a side effect, but you never do.” That truly touched my heart.💜

I explained to him that with lots of therapy analyzing •how much I fight my illness vs. •how much I accept my situation – this has been a constant struggle for me. But I’ve worked very hard to focus my life on just one moment at a time. And appreciate each moment, prioritize what is important to me: •my family, •my advocacy, •my business of serving women, •my friends. If I focus too much on what tomorrow might be; the pain to come – that is the definition of anxiety. If I focus too much on how bad the past has been, how much I’ve lost and been in pain – that is the definition of depression. I need to live in the moment; it’s truly all we ever have, and it is precious. I also accept how critical REST is; rest does not mean “lazy.” And my broken body must rest before and after everything I choose to spend my time on. And that just has to be okay. 🙂

So, I got my 30+ injections on this most precious Botox Day.🎄 And was home before noon. I’ve been in bed the rest of the day… hurting, sleeping on and off, taking my medicine. Hopefully, the magic juice starts helping in about 7 days. It’s been a rough couple of weeks here.

Botox Day, hey, hey!

💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉

Love those forehead injections

#WaitingRoomShoePic #ChronicIllness #ChronicMigraine #RA #SIJD #cefaly #BotoxforChronicMigraine #neurologist

Posted on by MyBeautifulMigraine · 1 Comment

Migraine is poorly understood

Migraine remains a poorly understood illness…The syndrome is too various, too complex, to mixed up with external stimuli and the personality of the sufferer..I have come to understand that my headaches are cyclical and that they play a part in my emotional economy.. The truth is that separating neurological from pschiatric problems is often artificial..

Siri Hustvedt, from “Arms at Rest,” excerpted from “So Much More than a Headache: Understanding Migraine through Literature, Edited by Kathy O’Shea

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

Cefaly… a powerful tool for Chronic Migraine

I don’t know what I’d do without my Cefaly @cefaly_official … it makes life with #ChronicMigraine more manageable. It’s hard for some people to understand that Chronic Migraine is more than just a headache… it is a genetic neurological disorder… the neurological storm🌩 I’m determined to smile through.

I may bend, I may cry, I may spend many, many, many hours alone in my bed, and every cell in my body may scream in pain, but I will not break. I grow.🌳 I thrive.🧘🏻‍♀️ I love with all my heart & soul.💓

We’ve just returned from a visit to the North East to visit family. Cefaly was with me every day. There were days during our 9 day visit when I felt I couldn’t get out of bed or follow through with plans. However, an hour break with Cefaly and a lay down, and I could rise. I also kept my unit accessible during the drive: 2 days about 12 hours a day to and from… Cefaly helped when medicines could not fix it all.

Cefaly is not inexpensive. But I’ve saved for it, turned in older units for discount, and used coupons. It’s a one-time cost with only electrodes needing replacement. It provides an intense “electrical feel” stimulation to the trigeminal nerve, and I can feel the sensation moving up my head and down my face and nose. It helps me relax, it counters the pain, and it helps my medication work better. One round of treatment lasts approximately one hour. Sometimes, I do 2 treatments at a time.

People with migraine have hypersensitive nervous systems that over-react to stimuli, causing pain and neurological dysfunction. The trigeminal nerve- a multi- branched nerve in the head and face -is the major conductor of migraine pain.

From: Cefaly.com

During this Migraine Awareness Month of June, I am acutely aware of all the tools I need and use to manage my disorder these last 17 years of diagnosis.

It’s a filter; I’m not that pretty.

My prayers & thoughts are with you all.

#ChronicMigraineAwareness #MigraineAwarenessmonth #cefaly #cefalyselfie #Chronicillness

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