I Lost My Light and It Could Have Lost Me Everything | via The Association of Migraine Disorders

https://www.migrainedisorders.org/migraine-and-suicide/

If you follow this blog, you know I’m very open about my mental health struggles, especially as they relate to chronic migraine and chronic pain.

Last month, I had the opportunity to share on the topic of migraine and suicide to a wider audience, thanks to The Association of Migraine Disorders, which I am a huge fan of.

It was an experience I enjoyed a great deal – they were wonderful to work with – and I hope you’ll take the time to hit the link to my article they published and leave any thoughts you have!

There are some great posts by other advocates on their blog, as well. I found some interesting topics there; maybe you will, too!

Be well, or as well as you can,

– Selena

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Dear Pain Patients, Let’s STOP This

Stop sign
We need to STOP.

Dear fellow pain patients,

We need to STOP.
It may be an unpopular opinion, but I am so tired of the “blame the addicts” mentality. Honestly, I’ve been tired of it since day one.

Addiction is an illness…whether or not that person made a bad decision in the beginning or became addicted due to pain treatment (which the CDC’s own researchers say happens very rarely and which they knew before issuing their guidelines for prescribing pain medication in 2016), it is an illness just the same and they suffer regardless.

Pretty sure no one ever intends to become an addict. It isn’t a goal of What I Want To Be When I Grow Up.

Addicts are not the cause of pain patients’ suffering, and this opioid war is not saving or helping them, either. Which I think addicts and their families may feel misled or betrayed about; I know I would in their shoes.

Put the blame squarely where it is due – on the government’s inability to admit they are fighting the drug war on the wrong front and ineffectively, and their desire to look as if they’re trying when they haven’t clue one…even at the expense of us all, patients and addicts alike.
It is their willingness to make us all collateral damage that has caused this mess, and nothing else.

Where is our compassion for others who are suffering, too?

Be well, or as well as you can.

– Selena
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#pain #depression #anxiety #TardiveDyskenisia #panicattacks #chronicillnesssucks #chronicillness #chronicmigraine #migrainethuglife #invisibleillness #mentalillness #abusesurvivor #suicideattemptsurvivor #artist #poet #advocate #blogger #spoonie #DownTheRabbitHole #unpopularopinions #addiction #stopblamingaddicts #opioidwar #waronpainpatients

Child Abuse – The Scars Never Heal

Child Abuse
Sometimes one little thing brings it all back…like a pic on Facebook.

When one small thing brings all the feelings…this pic popped up in my Facebook news feed, and inspired this post.

THE LEGACY OF ABUSE

That good ol’ self loathing and feeling you’re never good enough and don’t deserve the good things that happen to you…spending your life being terrified everyone you love will realize you’re just a big nothing and will leave…convinced that pretty much everything that goes wrong is somehow your fault.

I’ve spent most of my life waiting for the other shoe to drop every time I cared about anything…so I pretended I didn’t.

The dictionary definition of “Commitment Phobic” just has a picture of me.
Not just with relationships, but literally EVERYTHING.

I’m a procrastinator,.even though it stresses me out…because I’m afraid of screwing up everything.

I need LOTS of options and a need to get every possible angle – good and bad – before I make a decision on things, both big and small; even then it takes me at least 2-to-infinity to make a decision…because I’m afraid of screwing up everything.

I have major control issues about my body and my life and a need to be totally in charge of myself and my body and anything that affects me.
And it’s AWFUL.
It doesn’t make me feel in control; it makes me a damn mess because I’m constantly trying to control the uncontrollable, or because I’m constantly trying to make myself accept that I CAN’T always be in control and that that’s okay.

Ironically, commitment phobic me needs tons of validation that I didn’t mess up, that I’m loved, that I deserve to be happy, that I’m not stupid or hopeless or ugly.
That I deserve to have a life at all, sometimes.

Because I always hear my father’s voice:
You’re stupid.
You’re ugly.
You can’t do anything right.
You can’t do that.
You don’t have any talent or redeeming qualities.

I hear my mom’s voice, too, and my sisters’, and my stepdad, and my kids, and my friends’, and Frank’s:
You’re so smart!
Wow, you’re so pretty!
You’re so good at so many things!
You’ve got this!
You’re a good person.

And do they help? OH, YES.
And I’ve learned some self-validation, because I shouldn’t have to lean on others for it.

I can’t even imagine how messed up and broken I’d have been if I hadn’t had my mom and my sisters to help hold me together.

But I wish just once that I could truly feel any of those ways without having to stop my ears to my father’s voice first.

Without having to fight myself and my scars to feel some satisfaction or happiness or pridw over my accomplishments and my joys in life, and without being afraid to some degree that I didn’t really earn it…that I’ll always be the loser.

That’s what emotional abuse alone can do to you.

I’m finally at a point in life that I mostly like myself, am comfortable in my own skin, and have some pride in myself and my talents.

But weirdly enough, I now have to fight that much harder against all those fears and doubts and conviction I’m failing at life.

THAT is my father’s legacy to me…and my sisters deal with it, too, even if they don’t mention it as much.

THAT is the legacy of child abuse.

That pic absolutely hit me in the heart…because that’s a long and far-reaching legacy.
I’M 49.

And even though I’ve come a long way in healing, I’m still that little girl who couldn’t be proud of anything she did because he would destroy it.

Who is incredibly uncomfortable with compliments because I was taught not to trust them.

Who is an advocate, artist, writer, and poet…who is funny and goofy and sarcastic and has a big heart that I finally quit hiding despite knowing it could get hurt.

Who knows that I’m better than what my father taught me to see myself as and that I’m worthy of good things and of letting myself be happy without crippling anxiety or needing to weigh every. damn. little. thing. so I can be prepared if it goes wrong.

And I know it’s okay to mess up, even, that it doesn’t mean I’m not as capable and smart as I am when things turn out well…it just makes me human like everyone else.

And…I know that I’m not alone in having to fight this.

I know a lot of y’all are struggling with the same things or others that are part of the same kind of legacy, and I want to tell you that I see you out there, you are not alone, you are not what your abuser made you believe that you were or are.

It wasn’t your fault. You didn’t ask for this. You didn’t and don’t deserve this.

If no one else has ever told you this, you’re hearing it now – YOU ARE ENOUGH.
YOU ARE WORTHY OF ALL THE GOOD THINGS, THE LOVE, THE HAPPINESS YOU WERE DENIED.
I wish I could have told you sooner.

Be well, or as well as you can.

– Selena

Getting Through The Day – Whatever It Takes

Encouragement
When getting through the day is hard, this is my mantra.

First, I need to state the obvious: this is one of the ways I cope day in and day out. Everyone is different and I don’t claim to be an authority on another’s illness(es), situation, coping strategies, etc.

Live in the now as much as possible.

I can imagine you getting ready to hit the back button/symbol.

What the hell is wrong with this woman? The “now” SUCKS – I’m in pain/struggling/fighting self-destructive thoughts &/or urges/a burden/*insert string of expletives*.

Is this some positivity bullshit?”

Yes, the now is a pretty constant suckfest for many of us even on “good” days. Why would we want to focus on it?

Here’s the thing:

Barring a miracle, I am and for the foreseeable future will be carrying the really ugly baggage of incurable chronic illness.

The view ahead isn’t just not pretty, it’s pretty depressing.

The view pre-chronic illness is pretty, or at least pretty normal-ish – a combination of good times and bad with some “meh” spots sprinkled in. On the surface, it seems like a good idea to remember the good ol’ days when I’m having a really crappy pain day or struggling with depression or anxiety. Happy thoughts and all that, right?

But on a really bad day (physically &/or mentally), that Think-About-The-Golden-Years thing can be a trap that trips me right into the Rabbit Hole…because it may not be nostalgia sending me there, but grief over all that used to be and the me I was then (a rose-colored glasses view, since I was rather mentally messed up, but high-functioning enough that most saw nothing ‘off,’ including me).

It IS normal to grieve who we were and our past lives, and to grieve them deeply. But it can also be quicksand.

Time tends to feel like it’s passing at a crawl when I’m in the Rabbit Hole.

So when the depression is kicking my a** really hard, this is my saving grace: Just hang in there in increments.

When dark thoughts hit, I tell myself to just hang in there until tomorrow. If I feel like that’s an eternity away, I break it down further – just hang in there a few more hours…a few minutes, even. And once I’ve done that, hang in there a few more, and a few more.

Whatever it takes.

Be well, or as well as you can.

– Selena

Kids and Migraine: What We Don’t Know CAN Hurt Them

When my son had his first migraine attack, he was 12, and we both immediately knew what was happening.

I’ve had migraine most of my life – 40ish years of episodic migraine attacks, and several years of daily chronic migraine.

But that’s not all – one of my sisters has migraine, and so do three of her five kids.

You could say the odds were stacked against my Spawn and my niece and nephews:

You might think that with such a prevalence of migraine in one’s immediate family, a child receiving a medical diagnosis of migraine is simple and obvious.

You’d be wrong.

Not your mother’s (or father’s) migraine

Migraine in kids can present very differently than in adults:

■ The head pain often affects the whole head rather than just one side.
■ Attacks are shorter, sometimes lasting less than an hour but often the pain will improve in between two and four hours.
■ The headache may disappear but the child may feel sick or be sick and this may be worse than the head pain. Sometimes being sick marks the end of an attack and brings relief from all the symptoms.
■ There may be abdominal pain and no head pain.
■ Often car sickness is an indicator of migraine.
■ The headache can come on very suddenly, and the child may be in severe pain in less than 15 minutes.
■ Some childhood syndromes like vomiting in cycles every few months for some hours, turning the head to one side for a few seconds and turning it back again, episodes of dizziness like the room is spinning, and colic as a baby can be predictors of migraine in later life.
https://migraineresearchfoundation.org/about-migraine/migraine-in-kids-and-teens/

My son had classic migraine without aura symptoms, but his attacks hit hard and fast and were often over within a few hours. For these and other reasons, his doctor thought he might have cluster headache instead. But close observation netted a diagnosis of migraine.

One of my nephews has abdominal migraine (migraine that causes abdominal pain rather than head pain). Had we not had a clear history of migraine in our family, it could have taken much longer (or not at all) to reach his diagnosis.

I suspect that I had abdominal migraine as a kid. My symptoms were extremely close to what my nephew experiences. However, even though my symptoms landed me in the hospital for two weeks of [inconclusive] tests and observation, I was never diagnosed with migraine as a child.

My experience is much more typical than those of my son and nephew.

Treatment disparities

Many migraine medications for adults have proven ineffective for children with migraine, or can cause adverse effects.

For example, my son experienced greatly elevated pain and an intense burning sensation after taking imitrex (sumatriptan). It was intolerable, and other abortives were no better. (Anyone can be allergic to or have adverse reactions to any medication, but considering that very few migraine medications are approved for use children, I thought it bore mentioning).

With that sort of reaction, he had to ride out his attacks and his only rescue medication was a pain medication, which he usually opted not to take because of how long its effects lasted – it incapacitated him longer than his migraine attacks did.

Interestingly, the majority of his attacks as an adult have been silent migraine (migraine that doesn’t cause pain, but can include incapacitating aura and other symptoms).

Doctor (and parent) knowledge is vital

General practitioners and pediatricians may not be knowledgeable in the diagnosis and treatment of migraine. It may be up to parents to choose what is best.

A qualified doctor and informed parents are always the best place to start.

That’s why Diamond Headache Clinic, the oldest and largest headache and migraine treatment center, created this slide show to help inform parents.

Presentation courtesy of Diamond Headache Clinic

Migraine in children is easily overlooked and/or undiagnosed when they display atypical symptoms. Knowing the signs is one of the most important things we can do for our kids.

Be well, or as well as you can,

Selena

**disclaimer – I am not affiliated with nor do I collect any form of revenue from Diamond Headache Clinic. My views are solely my own and are influenced by information from friends who have received treatment at the clinic and by its reputation.**

Still At War – The CDC vs Pain Patients

Opioid graphic
****This post may be triggering if you are a suicide attempt survivor, suicide loss survivor, or struggle with suicidal thoughts.****

This post was inspired by this article: https://medium.com/@ThomasKlineMD/opioidcrisis-pain-related-suicides-associated-with-forced-tapers-c68c79ecf84d

But advocates have been saying these things for three years to little avail.

Those who suffer from chronic pain are already at an increased risk of suicide. Studies have shown that chronic back pain and chronic migraine are the highest risk types of chronic pain for suicide.

The suicide risk is higher than among the general public even WITH treatment.

What has the CDC contributed to that?

The CDC’s opioid prescription guidelines released in 2016 were supposed to help prevent addiction and opioid related deaths among patients and heroin addicts. Geared toward general practicioners not as knowledgeable about chronic pain issues, the guidelines were touted as not mandatory – simply suggestions.

That has not been the reality.

Even a few months before the guidelines were enacted, there were concerns fueled by the discovery that the CDC had manipulated statistics to inflate the number of deaths per year by counting all opioid related deaths – both heroin overdoses and prescription opioid overdoses were combined under one misleading total without any explanation or breakdown. Even worse, it was not made clear that the majority of prescription related overdoses were among people who had never been prescribed opioids to begin with.
It was admitted that this was done purposely and that the CDC had disregarded the research data THAT THEY THEMSELVES had requested.
It was also admitted that the CDC had knowledge that opioid over-prescribing was NOT leading the heroin overdose epidemic.

Still, the guidelines were enacted and the faulty information was not corrected.

▪ Within a month of the guidelines being enacted, Medicare adopted them as mandatory.
▪ “Pain acceptance” was strongly suggested as a replacement for opioid therapy, with the opinion that many pain patients unrealistically expected complete pain relief from opioid therapy – an idea that has been refuted through studies…even before the guidelines were enacted.
▪ Pain management doctors – experts and specialists in pain management – who disagreed with the supposedly non mandatory guidelines and continued to prescribe as usual began to be investigated and have their offices raided by the DEA.
▪ Other doctors began cutting pain patients off opioids by drastically reducing dosage or refusing to prescribe them at all.
Some dropped all their pain patients, leaving them without any treatment at all.
Some left practice altogether, again, leaving patients with no treatment.
▪ Many doctors told their patients that the guidelines were mandatory and they could lose their licenses by not following them.
THIS IS UNTRUE.
▪ The guidelines were not supposed to affect surgical or cancer patients.
THEY HAVE.

Advocates have been speaking up since the beginning. And often our concerns have gone unaddressed and unacknowledged.

Much worse is that our fears have been justified by the number of suicides among pain patients who have been sentenced to living with unrelenting, excruciating pain.

And where are the results of these *guidelines* among addiction and overdose?

Unfortunately, the only data I can find is from the CDC, whom I no longer feel is trustworthy. But even according to them, the number of overdose deaths skyrocketed in 2017, led by illicit opioid fentanyl (purportedly more deadly than heroin- https://www.vox.com/science-and-health/2018/8/16/17698204/opioid-epidemic-overdose-deaths-2017).

2018 data is not finalized, but reportedly is very close to 2017 totals.
And in all honesty, this infuriates me even more.

Pain patients have been suffering unspeakably when opioid prescribing had already been on the decline a few years before the CDC guidelines were enacted…It’s pitted pain patients bitterly against addicts (remember, addiction is ALSO A DISEASE, and any hateful comments WILL be deleted. Continued disregard of that request will result in being banned)…and it’s been for nothing from the beginning.

The guidelines have not significantly impacted opioid overdoses. They’ve increased.

How many of those deaths were suicides or the result of desperate, suffering pain patients trying to alleviate their excruciating untreated pain?
We may never know.

But we DO know this very clearly: the CDC guidelines have caused more suffering, harm, and deaths than may ever be acknowledged, and that includes the suffering of addicts who still have not been helped.

THIS HAS TO STOP.

– Selena

The Versatile Blogger Award

Versatile Blogger Award
My first award ever! 😉

https://lilhamilton.wordpress.com/2018/11/17/the-versatile-blogger-award/#comment-2615

So, this is a fun thing that I have Nikki Albert to thank for – since I’ve never gotten an award for blogging and it’s come during a really rough week, it’s an especially welcome thing.

Tagged Bloggers who are versatile and interesting. And they can respond to this, or not, either is cool.

THE RULES:

1. If you are nominated, congratulations – you have been awarded the Versatile blogger award!

2. Thank the person who gave you the award and include a link to their blog.

3. Select 15 blogs/bloggers that you’ve recently discovered or follow regularly.

4. Nominate those 15 bloggers for the Versatile Blogger Award.

5. Tell the person who nominated you 7 things about yourself.

Since Nikki knows pretty much everything about me, I’m going to to list my seven things about me here instead.

1. My Spawn’s (aka my son) encouragement is why this blog exists. I had toyed with the idea of blogging since I’d gotten some very positive responses and feedback on articles I’d written for The Mighty, but the upshot is that I was too chicken to do more than kick around the idea. I never thought of myself as particularly inspiring (and my anxiety was still undiagnosed and untreated at the time), but he convinced me to give it a go…and the rest is history.

2. I advocated for mental health awareness before Facebook existed and before I was diagnosed with my own mental health issues, but I never saw myself as an advocate – advocacy seemed like something on a professional/higher echelon than my awareness efforts. The first time someone referred to me as an advocate, I was flabbergasted.

3. I’m a fantasy/sci-fi reader and a comics geek. Marvel is my first love comics-wise.

4. I’m a digital artist and have an etsy shop dedicated to personalized fandom and fantasy art. I also do art for novels my sister is writing. http://www.etsy.com/shop/GoblinKingFantasyArt

5. I’m allergic to mushrooms and opioids, and have a toxic reaction to ant venom.

6. My list of medication allergies and highly unpleasant reactions is so long that my GP keeps a short list of the things I CAN take for quick reference. Currently, that list is 3 antibiotics and my current anxiety and depression meds.

7. I take in strays, abandoned animals, and rescues. I currently have 14 outside cats, 2 inside cats, 2 box turtles, and a German shepherd slobber factory. Ferals, a possum, and an armadillo are frequent guests who stop by for food and then go their own ways. It seems like the word gets passed along to every animal in the vicinity that my yard is a designated safe place, even if they don’t decide to move in or are comfortable around humans. The only rule of Selena’s Halfway House, Sanctuary, and Soup Kitchen for Animals is no picking fights (which most of the visitors seem to know instinctively, so I’m guessing it’s a respect/survival thing).

I have some bloggers to nominate myself, and will update this post as I accumulate links to their blogs.

Be well, or as well as you can.

– Selena

My Nominations:

Jacob Moore on Instagram

Jacob Moore @

Why What We Know & How We Talk About Migraine Matters

Migraine Awareness Week

“When will people stop equating migraine with headache?” is a question the millions who live with this debilitating condition ask frequently.

Maybe when we ourselves start consistently referring to it as the disease it is and know the facts ourselves.

Before anyone gets offended by that statement – not so many years ago, I was one of those who, much like Jon Snow in Game of Thrones, knew nothing (or nothing correct, which is as important), at least in relation to my illness.

Until my occasional episodic migraine attacks suddenly started stepping up their game after roughly 30 years and then apparently decided it was just unbearable to part with me by transforming to daily chronic, 24/7 365, everything I thought I knew about migraine was based on misinformed ideas repeated as fact for decades upon decades. And I’ve talked to many, many other migraineurs since whose knowledge is on par with what mine was then.

In my defense (and yours, if you’re like me), there was very little migraine research data to go on all that time. The current interest in migraine research and developing treatments specifically for migraine is relatively new – it has surfaced and grown over the last several years. The research showing migraine is actually a genetic, heritable, neurological illness is truly recent, although it’s been suspected longer.

So what have I learned about migraine over the past 6 years of it being my constant companion, and how does that affect my opinion that we need to change how we talk about migraine?

First and foremost, I’ve learned I don’t have “headaches.” I have a neurological disorder that causes head pain and other serious symptoms that affect my entire body, not just my head.

I’ve learned that the public perception of migraine changes very slowly, partly because many don’t follow or know about developments in migraine research.

I’ve learned that stigma and misinformation are pervasive and affect everything from the care we receive to our quality of life to how we see ourselves and our illness.

I’ve learned that when trying to convey the seriousness of my illness, if I lead with “I have chronic migraine,” listening often stops right there because many people [incorrectly] think they know what it is and don’t take it seriously.

I’ve learned how to frame migraine differently in conversation to up the chance that someone will listen and try to understand better.
I almost never tell new people I’m meeting that I have migraine right off the bat. I tell them I have a neurological disorder, and if they ask further I tell them what that disorder is – NOT because I’m ashamed or afraid of the stigma, BUT BECAUSE I WANT NEUROLOGICAL DISORDER TO BE WHAT THEY ASSOCIATE MIGRAINE WITH.

How WE refer to our illness matters and affects how people see it also.
One of my biggest peeves is seeing/hearing “migraine is not JUST a headache.”
Why? Because it makes migraine the equivalent of “headache + some other stuff.” And that is not only an inadequate and incorrect definition of migraine, but perpetuates the very perception we need to change.

“Migraine isn’t just a headache/Migraine is more than a headache” = headache + some other stuff.

“Migraine is not a headache” = neurological disorder.

Likewise, we don’t have/get “migraines.”
The correct terminology is “migraine attack(s)” or simply “attacks.”
Migraine disease/disorder is the illness itself, which causes the individual attacks.

I’ve learned TRIGGER IS NOT CAUSE.
Don’t fall into this trap. For one, it perpetuates the idea that simply avoiding triggers will make us well and that we somehow bring on our own suffering.
This is a huge misconception that even many with migraine believe, and it needs to stop now.
Triggers set off ATTACKS; they DO NOT cause migraine.

Here’s how it actually works, if you’re looking for a short and sweet explanation:
Migraine disease causes extreme sensitivity to some stimuli (triggers) in those with migraine, which in turn set off individual attacks.

If you do not have migraine, these environmental or internal triggers will not affect you as they do someone with migraine disease, and triggers vary widely. What triggers your attack may not trigger another person’s.

Explaining it with a comparison to asthma has worked well for me. A person who has asthma ALWAYS has asthma, even between attacks. Asthma is what causes the hypersensitive reaction to whatever sets off an asthma attack.

Likewise, a person who has migraine ALWAYS has migraine, not only during an attack.

I’ve learned that there is no cure for migraine disease, and although treatments exist, they do not work for everyone, and one can have an allergy to them or negative reaction just like any other medication.

I’ve learned that you cannot rely on your doctor to educate you on this, and here’s why: many doctors are not trained in migraine diagnosis or treatment unless they specialize in headache disorders.

▪The average medical student gets about two hours of education on all headaches and he or she might get another two hours if neurology is pursued (Migraine World Summit).

▪Migraine is misdiagnosed about 50 percent of the time, according to the National Headache Foundation.

▪Less than 25 percent of chronic migraineurs are accurately diagnosed (study).

▪The healthcare system has failed migraineurs. Patients need to educate themselves on migraines and understand the limitations of doctors in a broken medical system.

(Link to article these facts are from: https://www.migrainekey.com/blog/how-much-does-the-average-doctor-know-about-migraines/ )

I’ve learned that neurology is not the Holy Grail of migraine knowledge or treatment many assume it is. Neurologists are basically the General Practitioners of all things neurological.

This #MigraineAwarenessWeek , lets educate ourselves with the facts so we can properly educate others.

It may seem like I’m being overly pedantic about this, but these things do matter and make a difference. I have seen it.
Let’s stop adding to the very stigma and miseducation that punishes us on top of our illness.

In the spirit of learning and educating others, I have a social media challenge starting…now!

MAW social media challenge

Each day during Migraine Awareness Week up to 3 facts from credible sources shared by participants will be posted on Down The Rabbit Hole by 8pm CDT (Central Time Zone is GMT/UTC – 5h) in graphic form as below.

You can download graphics from the Down The Rabbit Hole page if you’d like to keep one of your facts I’ve used.

Be well, or as well as you can…AND GET BUSY!

#GetYourKnowledgeOn

– Selena

One Day Without Pain

One day
Only one???

We with daily pain always say we’d like just one pain free day…
Thinking about that realistically, do you really think that would be enough for you?

It would not for me.
I’d rather have no reprieve than one given then taken away.
Speaking from experience with having a treatment that made a small but significant-to-me difference, then losing health coverage and having to give it up after 2 years, I am pretty certain that while just a single pain free day might be enjoyable in the moment, it probably would have the effect of leaving me more depressed when it was over.

I also have my doubts about the ability to enjoy it, as someone who’s been in daily pain for six years – I’d be so busy trying to cram as much of what I can’t do now into it as I could that the sheer joy of such a day would be lost.

There would be no way to fit all the things my soul craves into a single day:
Time with family in varying locations. Extra time with grandkids. Catching up with friends. Seeing a current movie (I haven’t been able to see one in theater for 3 years). Cleaning my house (I’ve been itching to do this to my satisfaction for years). Going dancing. Going swimming. Walking in the park. Having a picnic. Riding a bike. Cooking something elaborate AND enjoying eating it. A slumber party with my daughters. Drinking a margarita with no medication interaction. Wearing something cute without having it hurt my skin. Sitting in the sunshine without sunglasses. Cuddling with someone I love. Driving for a few hours, singing to the radio cranked up to the max. Reading a real book without the white pages throwing a migraine-inducing glare. Playing with my kittens until they were tired instead until I’m too tired. Taking a long walk.

Having a conversation that doesn’t include the words “migraine,” “nausea,” “allodynia,” “pain,” “limits,” “triggers,” “chronic,” “aura,” or “can’t.”

No, one day is not enough; would never be enough. I’d always be left wanting more…

Reality.
Coming back to this pain-riddled body after my one day.

Reality.
Missing the things and people I love all over again.

Reality.
It’s my curse, and my life.
Limits, pain, dimly lit rooms, fighting for a moment of fun that I won’t suffer for.

One day?
No. I want MORE. I want LIFE.

Anything less is not enough.

Be well, or as well as you can.

– Selena

The Weight of the Things We Carry

Heavy
Some things are too heavy to carry.

Letting go of the heavy things…

Sometimes, this means forgiving someone who has wronged, hurt, or abused you; NOT because it absolves them or makes what they did okay, not because they asked for forgiveness or another chance, apologized, expressed remorse, not because you’ve been told it’s your Christian, familial, or wifely duty – but because bitterness and/or anger is hurting YOU, holding YOU back, and is still giving them power over your choices, healing, and life.

Sometimes, it means forgiving yourself.

It DOES NOT mean you’re okay with them or will forget what they’ve done to you, it does not mean you didn’t experience trauma from their actions, it does not mean you won’t still have aftereffects from the trauma or that it hasn’t had influence on you or your life choices, it does not mean you won’t still hold them accountable (personally or legally), it does not mean you want to keep them in your life (if they’re still alive), it does not make you weak.

It does not mean it doesn’t matter or that you don’t matter.

What it does mean is that you are taking charge of your life, owning your your choices, your mental and/or physical well-being, and taking accountability for things you’ve done or chosen instead of living in a victim mentality and shifting responsibility for anything you knew or now realize was wrong.
What it does mean is freeing yourself from something/someone weighing you down.

I am speaking from experience as someone who has been victimized and I do know how much easier this is said than done. But it is one of the best things you can do for you.

Sometimes, you’ll find forgiveness comes easy, but mostly, you’ll find it isn’t some one shot thing. It’s a process that you go through as you discover the depth to which something has affected you. Sometimes it happens naturally as part of healing, and others you have to work at it.

The single most important advice I can give you is to always forgive you.

You aren’t to blame for the things done to you.

You didn’t ask for it, whether it was abuse you lived with, a violent act, or the result of a mistake you made.

Be good to you and give yourself the leeway and understanding you’d give another.

Give yourself the time to heal, no matter how long it takes.

Be well, or as well as you can. – Selena .
.

The Exhaustion of Mental Illness

All that
Actually, I’m napping. But you get the point.

So, ever wondered how mental illness can make someone so tired and exhausted?

Wonder no more! Here are some excerpts of a day in the life of someone living with more than one mental illness/mental health struggle, and as a bonus, they’re some pretty conflicting illnesses to boot.

A Day In The Life:

Depression: “Don’t get up. There’s nothing good out there, and if there is, it’s not for you.”

“Don’t worry about answering that text. They won’t notice, anyway. They’re just being nice; don’t tell them your problems – they don’t want to really hear it.”

Anxiety: “But if I don’t get up, people will think I’m lazy. Am I being too lazy? If I don’t answer, will they be annoyed? What if they think I’M ignoring them? I’ll just tell them I can’t talk now. Omg, that might have been rude. I’d better apologize. Wait, what if they didn’t think it was rude and that it’s weird I apologized? Why did I say that? They think I’m weird now. No, that’s ridiculous – they don’t think that. You know they don’t. Oh MY GOD why did I say that? I’m such a hopeless idiot. Everyone knows it. Why did I get out of bed???”

Depression: “Go back to bed. Who cares what they think? Life sucks. Go to sleep – at least you can’t screw up everything while you’re sleeping.”

Panic Attack: “HOLY SHIT DANGER DANGER GET UP GET UP MOVE PACE MOVE DON’T STOP TOO DANGEROUS YOU’LL DIE IF YOU STOP DANGER MOVE MOVE MOVE NOT THAT WAY HYPERVENTILATE CAN’T BREATHE NO NOT THE BED DON’T CALL THAT PERSON RUN RUN MOVE DON’T THINK DON’T STOP HAVE TO MOVE WHY CAN’T YOU THINK NEVER MIND DON’T THINK PANIC PANIC PANIC — shit, I’m done and you can rest now. But be ready in case.”

*body feels like lead*
*chest hurts*
*bone-tired*
*tries to rest*
*screaming migraine goes into overload from the stress reaction*
*can’t rest*

Depression: “Really? You can’t even get something like sleep right? How pathetic ARE you?”

Anxiety: “That’s a good question. How pathetic AM I? No, that’s NOT a good question. What the hell is wrong with me? Really F*ing pathetic. I’m really F*ing pathetic…and oh my GOD I really called that person during a panic attack! I can never speak to them again, but I have to speak to them again…should I apologize?”

*and over…and over…and over…round and round it goes…where it stops god only knows.*

It’s extremely exhaustive and a constant push/pull that can make you worry about your state of mind…a lot.

But it doesn’t make you weak – if you can make it through a day like this, you’re pretty damn tough, actually. Tired, but tough.

It also doesn’t mean you’re “crazy.”
It just means you have an illness(es) that need taken care of like any other illness.

(Preferably taking care of you gets you a nap at some point, too. 😉 )

Be well, or as well as you can.

– Selena

Guilt-tripping People Doesn’t Prevent Suicide – But Caring Can

Trigger warning

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“Suicide doesn’t take the pain away; it just passes it to someone else!”

Why using this statement to try guilting people with severe depression and suicidal thoughts into staying above-ground is despicable:

▪It will stop the pain of living for the person. That part that says it doesn’t is false.

▪Whether there’s pain in the hereafter is a matter of question and personal belief.

▪Yes, others will be in pain if one dies at all, and probably angry if it’s by suicide.
BUT
It doesn’t pass on the pain that person felt – if it did, they’d understand why.

▪The statement is categorically false.

▪Asking someone to stay above ground and breathing simply to spare others from pain…by essentially telling the person their pain ranks below anyone else’s in importance or otherwise invalidating it, devaluing it, blaming/shaming them for having suicidal thoughts.

And I’m going to say it outright, and it will probably offend or upset a fair number of you, but I ask that you bear with me, finish reading the post, and to try to set aside that knee-jerk reaction and seriously give some thought to my words:

Asking someone to survive for others is no matter what is the height of shit because it’s selfish. As selfish as you think suicide is.
Because suicide it isn’t about you or how we feel about you or that we don’t care if we cause you pain.

As you point out when you judge someone for thinking of or dying by suicide – it’s about us.

It’s about the incredible weight of going on day after day with pain that we never really get to set down, the beating we take from our own minds every minute that would be horrible to see if it were visible and the scars of emotional wounds that never healed quite right, which reopen and we are often desperately trying to triage behind the smile we put on for those we love.

It’s about all the days, weeks, months, and years we have hung on a ledge by our fingernails, and by God, we survived…and we probably survived not for ourselves, but for those we didn’t want to hurt.

And as much as it hurts you to hear that, how much do you think it hurts when we reach out and the most common reaction is, “How can you even think about doing that to us?”

How many of those wounds start bleeding out with every, “If you don’t want to die…well, don’t kill yourself. Just quit thinking about it.”…”Instead of being so depressed, think about all the people who love you and how much it would hurt them if you choose to leave them.”…”You have a responsibility to your family/kids/spouse/friends to live.”…”Oh, yeah – take the easy way out and leave the ones who love you to suffer instead.”

“How can you be so selfish?”
“Wow, other people have problems, you know, but you are making this all about you, you, you.”

You notice what those real, personally experienced comments all have in common, besides the barbed guilt trips?

Not a single one addressed the pain of the person who expressed needing help, except to downplay it or dismiss it, while using the pain of others as an “encouragement” or reason to live, suffering or not.
All put the pain of themselves or others above that of the person needing help.
No one said, “How can I help?”…”What do you need from me?”…or even an open expression like, “I don’t know what to say/I feel uncomfortable/unqualified/[xyz emotion]…but I’m here for you and I’ll listen/do what I can.”

Not one response asked about the pain or wondered about how all-consuming and terrible it must be to make not existing sound logical or necessary to escape it.

In all fairness, I realize most people mean well when they point out people who love you and positive things, and some consider a guilt trip or low blow acceptable if it keeps someone breathing.
But every single one, well-meant or not, devalued not only the person’s suffering but the person themself by their words.

EVERY SINGLE RESPONSE MADE THE PAIN OF THE PERSON NEEDING HELP ABOUT THEM.

SELFISH.

If you can’t bring yourself to try to help or to just listen and be there because you can’t get past your judgement or misunderstanding about depression and suicide, for God’s sake, at least don’t inflict more damage.

I know it’s hard for someone who hasn’t experienced depression to wrap their minds around how it makes people truly unable to see anything but an endless existence of constant, soul-killing pain…or death as the only logical way to stop the pain.

How it isn’t that you don’t care about the pain and grief your loved ones will feel, but that you literally cannot see past the pain you’re in at that point – it’s like having blinders on. You can’t see the people who are lighthouses for you, because you can’t see through, under, over, or around the pain in front of you…and you can’t take them off, because you aren’t – CAN’T – thinking clearly enough to realize they’re not part of you.

At that point, it’s only if you come through the other side that you realize how much “you” you haven’t been, how much poison depression had been whispering over the voices of those you love and your own, and how much it made you believe its lies over the things you know are true…when you’re more you.

How much control over your thoughts you DIDN’T have, not because you weren’t taking your meds, not because you never thought of those you love, not because you just didn’t think happy thoughts, not because you were selfish, but plainly and simply because your illness got the upper hand despite you trying your best and fighting to hang on to those things.

See, that’s the thing people need to realize about suicide – it’s not a choice.

It’s death by depression; suicide is the MANNER of death – the “how” – but depression is the WHY.

Depression is an illness.
An illness that CAN be terminal at times, and that despite there being treatment it doesn’t always work for everyone, and sometimes one that did help inexplicably stops working, or that sometimes there are times when symptoms break through.

The same things can happen with a disease like cancer.
But when a person dies of cancer, we don’t question if they quit being positive, if they weren’t going to treatment or taking it properly, if they just didn’t care about leaving those who loved them to grieve, or say, “Wow, other people have cancer too, you know. She didn’t have to die from it. She was just making it all about her.”

We don’t tell people who have asthma, “I’ve never had any problems with breathing, and although I can see that you can’t breathe, I don’t REALLY understand it, so I just can’t help you.”

We don’t tell people who have a “physical” illness to just not have it or to not let it affect them.

When will we finally see that mental illnesses are just as physical as any other illness?
It doesn’t get much more physical than life or death.

Many are biologically and genetically based and cause physical symptoms as well, and even ones that are a result of environment or trauma…well, seems to me that it’s pretty simple to grasp that those were just as unasked for.

When will we stop stigmatizing those with mental illnesses and their effects? When will we stop seeing them as unimportant and not serious unless they affect or harm someone other than the person themselves?
Why are we letting those things affect how we see a person and their struggles to the point that they become unreachable?

You don’t have to understand to not judge. You don’t have to understand to help or to just be there.

You don’t have to understand to care…

If more people would see this, maybe less pain in this world would be “passed to someone else.”

Reach out to those you know or suspect are struggling. Because sometimes, they need YOU to reach THEM,

Because sometimes, the weight of all we carry just makes that impossible.

Be well, or as well as you can.

– Selena

 

The Migraine Pose Saga Continues – Trivializing Migraine

True migraine poses
#truemigrainepose pics

So…this migraine pose thing…you’ve maybe seen my posts on Instagram about it…or my tweets…or my last blog post on it.

Well, this happened…you know how much I love migraine.com, right? (Not sure anyone could miss that lol). But one particular writer, Kerrie Smyres, has been my migraine advocate idol since before I started doing the advocacy thing way back when – she wrote about the spectrum of migraine and how we shouldn’t judge by our own what a “real migraine” is, which was not only the first article I read by her but also very much set the tone of my own advocacy and wanting to make sure I include episodic migraineurs.

So she wrote this piece, and asked if I would mind contributing one of my pics of me in migraine mode. (Would i mind? Lol, if i could have turned cartwheels, I’d have been in the yard doing them lol)…and I’m in here grouped in with migraine.com advocates’ “true migraine poses.”

https://migraine.com/living-migraine/instagram-migraine-pose-fight-back-against-trivialization/

It may be a funny thing to be excited about, having the least flattering pic of myself on here, but I’m in a write by my migraine hero.

Feels like one of those ‘come full circle’ moments.

AND this article has some great info on how to fight back against the stigmatization of migraine.

Stay in the fight, migraineurs. We’ve had articles published about the backlash we’ve raised, but it isn’t over – others like Cosmopolitan and MamaMia have published the migraine pose article as well; it’s spreading.

If offending their key demographic is no deterrent, there really should be a consequence of some kind, so let’s keep taking the fight to them.

A few articles detailing the backlash:

“Migraines are not just headaches, and sufferers don’t tend to sit around looking glam with their hands resting on their heads.”

People who actually suffer from migraines are fighting back against the migraine pose trend

http://www.dailymail.co.uk/femail/article-5905697/Outraged-sufferers-accuse-migraine-pose-trend-disease-shaming-viral-Twitter-backlash.gym

https://www.news.com.au/lifestyle/beauty/face-body/the-migraine-pose-taking-over-instagram-getting-backlash-on-social-media/news-story/de4af78c8e675c0a1ddcb2723dbc33ba

https://www.today.com/style/instagram-migraine-pose-causing-backlash-t133158

And I’m not a fan of FOX news, but we’ve even gotten their notice:

http://www.foxnews.com/lifestyle/2018/07/11/migraine-pose-getting-backlash-on-social-media.html

Be well, or as well as you can,

AND KEEP FIGHTING BACK.

– Selena

When a Magazine Adds to the Stigma of an Illness

IMG_20180626_190022_532.jpg

Alerted by a post from migraine advocate Kerrie Smyres about the so-called “migraine pose” (as called by an Elle magazine makeup artist), I just messaged the following to their Facebook page:

“Re: “migraine pose”

Thanks for adding to the stigma and appearing to almost make fun of a horribly painful and debilitating condition.

“The story behind the “migraine pose”: “We at ELLE.com love a weird Instagram pose, and the latest one populating on our feeds is giving everyone a headache. Well, it’s making everyone deliberately look like they have a headache. And it’s damn flattering.

Migraine Pose, coined by makeup artist Nam Vo, involves posing with one or two hands pulling your face up by your temples as if you had a, well, migraine. There’s a reason it’s trending: The pose tightens the face, makes your cheekbones look more prominent, and lifts the brows. It’s a temporary facelift for the ‘gram.

‘I love it because the beauty of your hands frame the face and give it more structure. I always make my models pose this way,’ Vo told me, ‘It’s also a great time to show off your manicure.’” https://www.elle.com/…/what-is-migraine-pose-instagram/

What follows are photos of true migraine poses, from someone living with chronic daily migraine.”

Link to Kerrie’s post calling on those with migraine to post photos of themselves during a migraine attack with the hashtag #truemigrainepose to call out ELLE magazine: https://m.facebook.com/story.php?story_fbid=10156463229200789&id=601600788

Link to ELLE’S Facebook page: https://www.facebook.com/ellemagazine/

Let’s not let this go. Migraine is a terrible and debilitating disease affecting millions, and is extremely stigmatized as it is.

Migraine pose, my arse. ELLE magazine you have some education and following up to do.

Be well, or as well as you can.

– Selena

When Chronic Illness Kills A Relationship

The end
15 years…gone.

 

One of the most painful things I can think of is the end of a relationship that was once full of love and happiness. It feels even worse that the cause of death here was my chronic illness.

Or rather, his inability to deal with my illness once things got tougher.

What is it like to become single while sick and disabled after 15 years, most of which were happy and healthy and in a happy and healthy relationship?

It’s like the bottom has fallen out of your world.

It’s like everything you knew, trusted, and believed in was yanked from under you and you don’t understand why suddenly you’re not enough any more.

It’s like seeing it coming but trying to fix it when there’s nothing you can do.

You can’t get well and stop the stress you’re both under financially and emotionally. You can’t break through your partner’s belief that any health issue can be conquered or fixed if you keep going like always. You can’t convince them your invisible, incurable chronic illness imposes real physical limits or that you’re at or past them when you look like nothing is wrong with you. You can’t explain why your grief over everything changing won’t heal when they won’t accept that you won’t get better.

It feels like being alone before you ever realize that you really are, because you can’t put your finger on the real issue…which is that as much as you may love each other, your partner can’t handle your illness and being your sole support, because they feel they can’t communicate their stress to you.

It feels like being punished for something you can’t control, and communication between you breaking down until it’s too late.

It feels like resentment, both directed at you and that you have for being resented.

It feels like trying to tell your partner that you understand…but you don’t. You may understand why your illness caused stress, but you will never understand why they could allow it to make them give up on you – on you together.

It feels like trying to tell your adult children without making them feel like they have to choose a “side.”

It conversely and perhaps irrationally feels like hurt because some of your children don’t take your side automatically, even though you’re trying to avoid making them feel like they should and you know it’s wrong.

It feels like not wanting to burden your family and friends, but not being able to do it alone either physically or financially.

It feels like being lost in a world you don’t know the rules to, if any exist.

It feels like fear and uncertainty are your new best friends who won’t leave you even for a moment.

It feels like longing for things back, even if they weren’t good for you.

It feels like heartbreak.

It feels like the end.

It feels like crying every night and having more flares because your stress affects your physical symptomatic levels.

It feels like being unable to explain that without others assuming it’s stress making you ill rather than exacerbating your existing illness.

It feels like feeling unlovable because of your illness.

It feels like every guilty thought you’ve had about how your illness is hurting your family is true in the worst possible way.

It feels like being lost.

It feels like strong moments when you think you did the right and necessary thing for you.

It feels like the rest of your moments being spent wondering if you did the right thing for you.

It feels like wishing they’d want you back.

It feels like wanting them to want you back so YOU can be the one to walk away from them.

It feels like wishing you’d never met if this is how it ends.

It feels like you’re a yo-yo ride of emotions.

It feels like having to lose the pets you raised and adore because you can’t take them to your new place…because you don’t have one.

It feels like as much a betrayal and trust-breaker as infidelity.

It feels like telling yourself not to even get interested in anyone because you can’t stand the reaction of mere aquaintances when you drop the Chronic Illness Bomb, much less that of someone you really like.

It feels like losing hope of a remotely normal life.

It feels like finding a new version of you as you discover who you are without them.

It feels more like,moving away than moving on or forward.

If it gets better you can’t see it yet, and in that, it feels like any breakup.

If it gets better, I’ll let you know.

– Selena

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Don’t Tell Me How To Feel About My Trauma

I think I can hate the experiences just fine. Acknowledging that they shaped me for better or worse is something altogether different in my opinion.

Being abused, molested, sexually assaulted, losing my best friend at 9 to an abusive foster mother who beat her to death, losing my niece, having a chronic illness, raising kids with mental health issues – I hate those things and that they ever touched me and those I love.
I hate them with a passion.

Did they shape me?

Yes.

But so did the neighbors who tried to help an abused kid, the Spanish and world geography teacher who gave a shy, picked on teenager a safe space in his classroom during lunch and tried to draw me out on the home abuse he suspected, the 6th grade science teacher who would later protect me from an abusive boyfriend in the mall, the supervisor at work who helped me when my ex threatened to kidnap my kid, the unconditional love and support of my mom and sisters, and the support of my chronic illness family.

Those people are the ones who turned my hurts into strengths, not the events themselves.

They are what made me and helped me make myself.

Don’t tell me how to feel about my trauma.

And don’t let anyone tell you how you feel about yours is wrong.

Be well, or as well as you can,

Selena

An Open Letter About Suicidality

Suicidality
My sisters and I a few years ago.

****THIS POST MAY BE TRIGGERING IF YOU HAVE ATTEMPTED SUICIDE, ARE A SUICIDE SURVIVOR, OR HAVE DEPRESSION/ SUICIDAL THOUGHTS****

When I was 19, I took 60 sleeping pills. I made a quick stop at a friend’s bridal shower, then went home to die.

I didn’t. Not because I got scared…but because my then bf was horrified at the thought he might be blamed and called 911, because I was pretty far out by then.

The EMTs that night were the true heroes who gave their all to keep me here. I remember them the most through the fog of lights and noise, especially the woman who talked to me the whole time I faded in and out. “Stay with me! Come on, sweetie, just stay!”

I wanted to tell her no. I wanted to tell her that even when I was breathing, I wasn’t alive; that this life and each breath I took was loaded with too much pain to stay.

But I couldn’t. Her face was the last thing I remember.

I woke up in ICU. It was a day and a half later. I was confused. There were tubes everywhere. I wanted to talk, but one was in my throat.

The first thing that registered was my little sisters, sitting across the room with tear tracks down their faces. They were the first to realize I was awake, and Daphne jumped up, dumping Diana on the floor.

Then my mom, bawling so hard it hurt to look at her…at any of them.
My father was there. I tried very hard to ignore him. He was one reason I didn’t want to be alive. He was trying to act happy…but I could see the anger underneath. He wasn’t angry so much that I’d scared them, but that I’d embarrassed him by this and by what secrets I might tell.
He was relieved that I didn’t. I didn’t mention him at all, I think, and that made his act easier for him.

My attention wasn’t for him anyway.

I don’t remember what was said. I remember my sore, scratchy throat. I remember the nurse who removed the tube telling me it was there because I’d fought them getting the charcoal down, and that if I wouldn’t fight more, she’d leave it out. I had no intent of agreeing, but I did anyway.

I remember the fear and hurt on my sisters’ faces, and the relief that I was alive. I remember the way it hurt more than anything I’d ever felt to see that.

I remember us all crying. I remember wishing I hadn’t woken up or survived. That wasn’t in my plans.
I remember telling them I was sorry, and I was. Sorry I’d hurt them. Sorry I’d lived.

See, the biggest, most awful, scary, ugly truth about a suicide attempt is that sometimes (often) we aren’t glad we survived.
Sometimes not at first, and maybe for some, I suspect not ever.
And I was not at first.

More than anything, though, I was scared to try again. To not succeed again and to see that look in my sisters’ faces that still haunted them for a while when they didn’t realize it….that would be unbearable. To see that pain in my mom’s eyes again…
Those things haunted me and followed me like ghosts as I slowly learned to live.

I promised myself I would never, ever be the cause of those things again.

For 29 years, I’ve kept that promise.

It hasn’t always been easy, though. You’d think it was, right?

And that’s the other big scary truth about suicide attempts.
People who attempt may be (or become) glad we survived. Sometimes it creeps up on us slowly, like it did me, and we realize one day that we are actually okay…maybe happy…maybe grateful…with being alive.
Probably some are immediately grateful.

But we will almost certainly struggle with depression and suicidal thoughts again. We are at greater risk of dying by suicide, sometimes years later.
We will very likely need help, be it counseling, medication for depression, or both.

I won’t lie.
I won’t tell you it’s easy.
I won’t tell you I’ve never struggled or don’t sometimes still struggle.
I won’t tell you it will get better – sometimes it doesn’t. Sometimes we don’t get a happily ever after. Sometimes it isn’t a ‘temporary problem’ that will resolve itself.

I will tell you that you’ll never know if you don’t hang on.
I will tell you that it can be infinitely worth it.
I will tell you that each day you win, you are braver than you know, struggle or not.

I will ask you this: Please stay with me.

I wish I could tell that EMT thank you and that I’d pass on her plea.

– Selena

First Drug For Chronic Migraine Approved in US

#DownTheRabbitHole #migraine #Chronicillness #ChronicMigraine #CGRP #migrainenews

http://www.easttexasmatters.com/news/us-approves-1st-drug-developed-to-prevent-chronic-migraines/1185927462

Sigh. I’ve been remiss on posting about this because I don’t want my personal feelings about it to dampen hopes.

Personally, the estimated reduction doesn’t sound any different than botox promotions…and what they promote is always the more optimistic result.

No thanks. I prefer to know my realistic probabilities as being daily chronic for so long (yeah, the length of constant pain does reduce the probability of improvement, sorry to say).
No offense intended to anyone who isn’t daily – I know it’s just as disruptive and plain miserable when you have distinct separate attacks with days between or whatever your particular migraine hell is.

I’m just saying I wish there were more result ranges mentioned up front. Because quite frankly, sometimes that tiny improvement isn’t close to worth the price tag or side effects.

I do know one person who was actually in the trials and it DID dramatically help her pain.

BUT.

MIGRAINE IS NOT PAIN.
IT’S A GENETIC NEUROLOGICAL DISORDER AND PAIN IS ONLY A POSSIBLE SYMPTOM.

Though it DID help her pain, she learned something surprising that I did while on botox – the other symptoms we don’t usually think about or focus on so much still exist and still are disabling.

This is not an abortive – it will not stop an attack. And as a preventive, it may not be worth it for people like me.

One more side note from a post by a friend:
“In one study, patients given Aimovig saw their migraine days cut from eight to four a month, on average. Those who got dummy shots had a reduction of two. Each patient group had similar minor side effects, mostly colds and respiratory infections.”
I don’t know about you guys, but this makes me a bit leery. Having fibro, my colds last longer and can get really bad. I realize it’s just a side effect, but it makes me nervous and being sick to have less migraines isn’t appealing to me.”

Comorbidities, anyone? Was this not considered at all? If so, that is downright criminal in its own right, because the number of people with comorbid conditions is incredible.
There are very few I know with zero comorbidities.

And that’s not even getting into price.

I’ve been an advocate too long to find something that doesn’t treat the entire disease exciting, I suppose, because I’m too aware that pain is NOT the only reason many are disabled by migraine.

My main hope for this? That migraineurs, doctors, and researchers finally get past migraine = headache because of this.
Until then we will NEVER have attempts at a more complete solution or be taken as seriously as we should.

– Selena

It’s My Party And I’ll Cry If I Want To

 

 

On April 24th, I turned 48 (almost half a century *gasp*) to very little fanfare.

Actually…to no fanfare. Fanfare is too loud, I was too nauseous for cake, and my Migremlins were screaming enough, thanks.

Sure, my family texted (proof that they know or I’ve drilled into them that phone calls hurt) birthday wishes. And Facebook friends galore posted well-wishes also…but here at home…it was forgotten. And that hurt.

I have chronic illnesses, not a lack of emotion.

So if I want to cry over my nonParty on my Unbirthday, I think I get a free pass to.

Big-Ol-Pity-Party-Free-Pass.png

And like the girl said, “You would cry too, if it happened to you.”

(Also because my feelings are valid and matter, no matter who says otherwise.)

Be well, or as well as you can,

Selena