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

Dear Pain Patients, Let’s STOP This

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

Still At War – The CDC vs Pain Patients

****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 Weight of the Things We Carry

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 .
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The Exhaustion of Mental Illness

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

 

“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

#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

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

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

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

 

My 48th birthday was a week ago…

 

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.

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

The Invisible Me

Depression and chronic illness/pain go hand in hand. Chronic back pain and chronic migraine are found to be highly correlated with significantly increased risk of suicide. But depression on its own is certainly no joke. It can be all-consuming and is accompanied by increased risk of suicide and other mental health issues.

How often have you tried to stay strong and appear like you’re handling things…while falling apart inside or when you’re alone and no one can see?

Depression loves to use our insecurities and fears against us, to whisper in our ear that no one cares or that we should be able to “get over it” or through it like anyone else.

It makes us believe we’re alone, even though millions of others like us are going through the struggle as well.

For National Poetry Month, I’m posting some of my poetry related to chronic illnesses/pain/migraine, domestic violence, and mental health.

Poetry has been an outlet/therapy/love for me for as long as I can remember, anything that deeply affected me emotionally has always been a part of that, but chronic illness and pain – physical suffering – affect our emotions and mental state much more than people not living with them realize.

These aren’t the only posts I’ll be making, but I hope that durimg this month of sharing, there’s something in poetic form you can relate to as well.

Be well, or as well as you can,

Selena

My Scars Are My Triumph

****WARNING: THIS POST MAY BE TRIGGERING IF YOU HAVE SELF HARMED, CURRENTLY SELF HARM, OR ARE A SUICIDE SURVIVOR.****

I don’t know a single person that doesn’t have at least one scar.

Large or small, prominent or barely noticeable, every scar has a story attached; sometimes one we remember firsthand and sometimes one told to us because we were too young to remember.

This post is a celebration of all we’ve lived with and struggled with and survived. Our scars are our story…written in flesh or carved in our minds.

– “That’s from the time I was chasing my sister on my bike and she stepped in front of me. I swerved on the gravel and the road bit my face. I refer to it as one of her two attempts to kill me. ( Kidding about her intention, not about how I refer to it. )” – me

This could be an example of one my daughter might tell:

– “This one is from an emergency appendectomy when I was 8. I got sick from the anesthesia, so they gave me Phenergan. Turns out I have a really bad reaction to it, my mom says I was ripping out my IVs and crawling over the bed rails until they had to give me something to make me sleep.”

My friends have scar stories of their own:

– “My beautiful battle scar on my upper right arm is still with me to this day! When I was 13 I was diagnosed with stage 3 Melanoma (skin cancer). The surgeons cut away the entire cancerous section including some of my muscle. The surgery itself was 8 hours. After months of more minor surgeries, stitches, Dr appointments, rehabilitation, and treatment I was in the clear, as in remission for 5 years.” – Abby

– “My favorite scar is from a c-section at 19. Frank Breach they called her. Her adoptive parents named her Alyssa. I like that name; I love her wherever she is.” – Ericka

Not all scars are physical or visible, but are still carried with us and remembered vividly in a way that affects us years later:

– “This one is from when I went to the ER for a severe Migraine attack. The doctor decided to give me Ketamine, also known by its street name, Special K. While rubbing his hands together and bouncing on his feet, he said to me in a giddy voice, “This will be fun!”
It was not fun. The walls moved around me and started closing in on me. The clock on the wall was making circular trips all around it. My bed felt like it was on violent waves of the sea, and I held on to the rail for dear life. My right leg disappeared. I couldn’t find it. Then I felt myself fading, until my consciousness was nothing but a small speck in my chest. I thought I was going to be snuffed out for good. I screamed and screamed for help, even though I couldn’t hear myself. The nurses ignored my complaints and asked if my Migraine was better. It wasn’t. Shortly after, they came back with a second dose and said, “This will help.”
It didn’t. They left me alone for 2 hours with my hallucinations and paranoia and then sent me out the door in a wheelchair.
My Migraine was still not better.” – Brianna

– “These are from years of mental and emotional abuse from my father. They aren’t all healed even now, 20+ years later.” – me

– “This one is from my father walking out on us.” – anonymous

– “My invisible scar is from being raped.” – anonymous

Some scars are visible, but not understood…often those who carry them try to keep them hidden because of reactions based on the stigma attached, rather than compassion.

– “Are you talking about physical scars or emotional/psychological scars as well? You could write a book on my psychological/emotional alone, but the physical one would be my body. I eat my feelings so it shouldn’t surprise me that I look like I do. There are a few others from when I was cutting myself but they are hidden really well. Another thing is since I have always researched any diagnosis and/or test result is I also research the treatments so when I was cutting myself I knew where not to cut. I was mindful of being able to hide them.” – Malinda

– “These are from years of self harm–for me, it was easier to deal with the physical pain than the emotional pain. Some are hidden, some aren’t; they are the days when the only thing that mattered was the physical pain to shield and distract me from emotional anguish.” – me

– “This one is from a suicide attempt.” – anonymous

– “I never hid my self harm scars. But people pretended not to notice because it was easier than admitting to themselves I needed help.” – anonymous

– “My scars are proof that I fought my demons and survived myself. They are a reminder of my struggles I’ve conquered.” – me

Sometimes scars are something that helps us relate to others or reminders that others are fighting battles we can’t always see. No matter which they are, our scars are part of us and of our story and can be used as a source of triumph over the things we’ve come through.

May your story be a tale of triumph and compassion.

Attention Seeking? If That’s What It Takes.

Some days I feel my life in a series screenshots…today is one.

Panic attack that I couldn’t get under control, fighting with myself until I crashed in exhaustion. I’ve never felt anything quite so terrible as they are (except maybe what spawned them?)…and I AM a control freak, especially when it comes to my body. I have to be able to be in control of it.

Life with chronic illness is an education in exactly the opposite of being in control of my body. It does things without my approval all the damn time. Do I really need my brain hijacking things, too?

Nope, but it doesn’t care.

Currently, my ability to deal with these sucks.

I finally put out an open call among my FB friends for any help dealing with these I can get. Being talked down in an earlier stage the best success I’ve found so far–my own grounding attempts are so hit and miss.

My idea is to have a list of people who are able and willing to help talk me down, and I’m open to suggestions on grounding myself, too. (I currently get mental health meds through MHMR–a program for the low income–but ours doesn’t do any sort of counseling. So asking for help there goes nowhere. I need coping skills, not just pharmaceuticals.)

Some folks will see it as attention seeking…and if wanting to not give up is attention seeking, I’ll wear that label. But mostly…I want people to know how real the struggle is.

Mental health is not a joke.

Please don’t treat it as one.

Be well, or as well as you can– Selena

#thatspoonielife #thatmigrainelife #thatchronicillnesslife #mylife #pain #depression #anxiety #chronicillnesssucks #chronicillness #chronicmigraine #migrainethuglife #invisibleillness #geneticdisorder #mentalillness #abusesurvivor #suicideattemptsurvivor #artist #poet #advocate #blogger #spoonie #DownTheRabbitHole #panicattacks #mentalhealth

Meds, Judgment, and Being Published in Teen Vogue

It’s the height of irony to me that in the year of being completely untreated for my chronic daily migraine, I’ve had pieces about medication get published.

Why am I untreated? Well, it isn’t by choice. I found out during a renewal interview for medicaid benefits that I actually should never have been qualified for them to begin with…but had been receiving them for two years due to an agency error.

Yes, you read that correctly. Two years of treatment that I could never have afforded, including a specialist and botox–which happens to be the only treatment thus far that made a marginal difference–now gone. I was reassured by the supervisor I spoke to that since it wasn’t my fault, at least I wouldn’t be prosecuted for defrauding the government.

Well, thanks. What a relief.

But surprisingly, that was not and still is not my major concern. Not that not being prosecuted or responsible for paying back thousands in assistance isn’t a good thing, mind you…but the treatment that was giving me enough improvement to be functional a few days a month was and is gone.

Just like that. Gone.

It’s possibly the worst thing I’ve been through in the past few years, and if you’re wondering how terrible that could really be, I invite you to take on my chronic daily misery for a week. Really, I’ll gladly share.

Because when you’re not functional more days than you are even minimally functional, a few days makes a huge difference.

And money…well, in my experience that sometimes (often) makes ALL the difference often in whether one is functional, in what treatments we can try, and even in how we are judged for our illness and what we do for it.

Judgment of the chronically sick and disabled is alive and well, in case you thought it wasn’t in this more PC era.

We’re given the side-eye for what we may have done to “cause” our health issues (um…be born? Mine is ’caused’ by genetics, thanks) and what we’ve done/are doing/aren’t doing to treat our condition; from “OMG, you’re putting those prescribed toxins into your body? How can you do that?” to “Well, if you’re not going to try ____, you must want to stay sick,” as if a few minutes of Google confers a specialty doctorate in our disease.

Unfortunately, all those treatments and medications and doctor appointments take….*drum roll*….money. Doctors aren’t exactly lining up to take patients pro-bono, despite the number of non sick people who are certain I can find someone to “work with me” on cost or payments (see, the problem there is that assumes an income at all to “work with”).

And Medicaid, disability, and insurance through the ACA are not the catch all safety nets people assume they are.

Plenty of people who qualify for medicaid in one state would not in another, because adult Medicaid is not federally mandated. It’s up to the individual states what the cutoffs for qualifications are and which benefits are granted. Also, it’s very hard to qualify if you don’t have a minor child in your home and aren’t working at least 20 hours a week, unless you are disabled.

Disability…I don’t have much good to say there. Plenty of legitimately disabled folks can’t qualify for disability. For one thing, doctor records are one the main things needed to make a decision, and since I haven’t been to a doctor due to lack of money in a year, my appeals have denied on that basis DESPITE having a Game of Thrones series sized stack of paperwork from doctor visits alone on my initial application. Also, my illness isn’t considered disabling by and large. (Although I don’t know many people who can drive to work, much less work, with frequent vertigo, or aura, or crippling pain. Go figure.)

Insurance through the ACA…first, will there be an ACA if Republicans in Congress have their way? Second, you still have to pay for insurance through the marketplace.

Sigh. So that’s why I’m untreated. Fun times. (Not really. Why is that the expression for un-fun times, anyway?)

Having to explain this is pretty exhaustive, which is why I usually don’t–people who want to judge are going to regardless.

And why it’s kind of hilarious to me in a weird way that I have an article ABOUT MY LOVE/HATE RELATIONSHIP WITH MEDS published in Teen Vogue this month, via The Mighty, who originally published it…titled Please Stop Judging Me For Taking Pain Medication.

Does anyone not see the weird funny in that?

There’s also the fact I’m almost 50 and being published in a teen magazine, but I figure my coolness quotient has that covered. 😉

I’m still pretty thrilled about it (despite the disagreement over the title you can see in my screenshot which was resolved pretty quickly- thanks to The Mighty and Teen Vogue for being cool about that) , because I think it’s an important article. Hit up the link and check it out, and let me know what you think!

Be well, friends! – Selena