Chronic Pain X 2

Feeling done today. Shouldn’t it be easier to understand each other’s needs when we both live with chronic pain…or at least make it easier to care?

When you’re just plain done with lack of teamwork when more than one of you has chronic pain.
One can help, one can hinder, or one can just quietly leave me be…but expect reciprocation of whatever one chooses.

Yes, it’s hard.

But some days you just have to pick you first and that goes both ways. Pain doesn’t take a holiday because you’re both too miserable to do shit.
I can’t just pack away my pain because you’re hurting too, and neither can you because I’m hurting. Some days all you can do is hurt together, and this has to be understood on both sides.

We do what we can to help each other when we can. That’s what partnership and love is about, right?
At the very least, don’t make things worse for each other, because there’s nothing okay about that.

*Also: Let me add this to be fair.

Sometimes, pain can make people irritable af, and sometimes irrational af, stressed af, depressed af…or all of that rolled in one incomprehensible af mess.

Be aware that it isn’t always everyone else who is the problem, sometimes the problem is your feelings about the problem, and discuss that when you’re in a better frame of mind.

Pain can do some lousy things to our minds, y’all. I’ve been that person at times…and I’ve seen posts to the tune of “I’m not responsible for how I act/what I say when I’m in really bad pain,” and that always boggles my mind.
Yes, you ARE. It’s not a convenient excuse to be an asshole.

Taking things out on others around you is never the right answer, so if this is an issue you need to figure out what to do with it.

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

Heads Up – There’s Still Life in My Rabbit Hole

Phantom stress
Stressed? Me? Why do you ask?

Hi, everyone!

I wanted to give y’all a heads up – I have been really sick this past month and dealing with some family and personal issues, plus I have a disability hearing this week.

Hopefully things will be back to what passes for normal soon and I can spend more time here again.

I appreciate every one of y’all and y’alls patience more than I can express.

Be well, or as well as you can.

– Selena 💜

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

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 .
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The Invisible Me

Depression
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

Never Forget, You Are A Warrior.

Chronic illness warriors
We often don’t feel like it, but surviving every day with a chronic illness, chronic pain, and/or a mental illness makes us warriors…even if all we did was survive. ❤

For National Poetry Month, I’ll be 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.

I hope that durimg this month of sharing, there’s something you can relate to.

Be well, or as well as you can,

Selena

Being Disabled Is a Job

#DownTheRabbitHole #chronicmigraine #ChronicPain #chronicillness #depression #anxiety #TardiveDyskenisia #panicattacks #mentalhealth #mentalillness #abusesurvivor #disability

THIS.
This sums up so many of my own thoughts. – Selena

BeingCharis

I’ve heard some say disability benefits are unnecessary hand-outs for people who should just die off, and why should hard-working people foot the bill for people who are lazy, whose lives mean nothing?

The disability process itself mirrors these same sentiments – the 3-5 years (average) process for applying, fighting for, and receiving disability (SSI or SSDI) in the USA is by its nature a grueling process, with analysts hired to deny applicants not once, but twice (standard procedure), forcing the applicant to appeal their case twice over several months before a hearing is granted, which then takes years to schedule due to a shortage of judges. It is a process intended to force people to give up.

You usually have to be literally dying to be automatically granted disability in the USA.

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Dangerous Minds Can Be Beautiful, Too.

Oh, yeah, I’m so here.

Never been too into coloring before this, but I’m officially hooked.

This book is awesome. It’s like a chicken soup for the mind, interspersed with colorable doodles by the author and quotes.
(I normally don’t have the money to spend on new books–insert sad face–nor do I recommend them in my blog, but this was a gift from a friend and I love it!)

Last night my Tardive Dyskenisia was acting up something awful. I moved from bed to the couch so my leg twitches wouldn’t keep my guy awake, but I couldn’t sleep. My breathing felt…tight. I was restless.

Usually when that feeling takes root enough, I start feeling anxious, and last night was no exception…sitting down to color was an act of will, but I hoped it would help head off the panic attack that restless, trapped, anxious feeling sometimes brings on.

Within a half hour, I was engrossed and my annoying twitches were mostly ignorable as I concentrated on coloring and breathing slowly instead of panicky hyperventilating. I never got to sleep–after trying 3 times and starting to get worked up again, I gave up on the thought of it and went back to my coloring. I remembered I had some kids’ glitter paint from the days my grandspawn Keaton was a frequent visitor, and decided to add it as an accent…and voila! Perfection (almost–I did tweak the quote to something I felt was more fitting for me).

It’s totally going on my wall, to remind me that I have a decent tool to help calm myself and that it’s okay to be uniquely broken…or perfectly the same; whichever fits my day.

It may not help head off every attack (what does?) but each tool in my arsenal is one worth a shot. 💓

Be well, friends–or as well as you can. – Selena
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#thatspoonielife #thatmigrainelife #thatchronicillnesslife #mylife #pain #depression #anxiety #chronicillnesssucks #chronicillness #chronicmigraine #migrainethuglife #invisibleillness #geneticdisorder #mentalillness #abusesurvivor #suicideattemptsurvivor #artist #poet #advocate #blogger #spoonie #DownTheRabbitHole #panicattacks #TardiveDyskenisia #trying #coloring #distraction

Trying…Sometimes, That’s Enough.

I published this over a year ago on The Mighty, but I’m feeling it today.

It’s funny how when you go back and read something, you either feel like you’ve grown or realize some things are an ongoing struggle…I noticed how one of the last paragraphs is very much what the beginning of a panic attack feels like.

bed-black-and-white-girl-window-favim-com-178300

Today is hard, but I’m trying.

Today, the physical pain of my illness is keeping me from moving much, and the depression I feel over that is a constant thorn in my side.

But I’m trying.

Some days are good, some are bad, and some are worse. Logically, I know this. I know this from experience. But somehow it doesn’t always make it easier.

It’s not the physical pain that’s the worst. It’s the mental and emotional pain that goes with it.

It’s not trying to get through the things that need doing; it’s trying not to do them that is the struggle. There is a counter piled with dirty dishes and we have no clean spoons. The cat litter needs changed. I have an appointment that needs to be rescheduled, but the thought of talking on the phone when my migraine is screaming means it won’t be done today.

I have limits that my body and my illness has set for a reason, I remind myself. Pushing past them is a very bad idea.

I know this… but I still feel the weight of the things that need doing like a physical pull. And fighting the guilt for not doing them exhausting.

But I’m trying.

I’m trying to smile at the people and things I love.

I’d rather be crying, or raging at my limits, or both. I’d rather be curled up under my blanket avoiding them, but I’ve learned that this isn’t good for me, either, because the depression that is sinking its greedy claws into me is just waiting to isolate me and make me feel alone and hopeless.

It’s hard to fight its whispers, but I’m trying.

Today it is hard to exist.

You’d think that it would be easy to just breathe, wouldn’t you? To just let it all go when the pain digs into my brain and even thinking is hard…but it isn’t. Just breathing feels like the hardest thing I’ve ever done, and thoughts are running through my brain like manic mice.

Existing is hard, but I’m trying.

I’m holding on to the world by the skin of my teeth today. I’m remembering that there are good days, even if I can’t see them. I’m reminding myself that I still do good things, even if today I don’t feel good enough.

Today is hard, but I’m trying.

And for now, that is enough.

Tardive Dyskenesia, The New Kid In My Menagerie

So…finding out that TardiveDyskenisia isn’t all twitches and grimaces and restlessness…oh, my!

All the things MHMR ( mental health and mental retardation, a government low income service ) doesn’t tell you, which is a lot. If you’re low income, never kid yourself about how much these people can or will help you. It is not remotely on par with a psychiatrist or therapy (which they don’t offer). They’re short staffed always and consist of nurses and caseworkers. They don’t give comprehensive information or ask comprehensive questions.

I just found out that other unexplained symptoms (and the ones most likely to trigger my panic attacks, of all things ), could be TD. NEVER BROUGHT UP BY MHMR, NEVER CONNECTED TO TD BY THEM.

What do people who don’t research obsessively do? Just trust that the people taking care of them know things or care enough to connect dots?

This is impacting my ability to post…my hands don’t work right all the time.
I’ve had breathing issues lately…it usually gets me into a panic attaack that I can’t control.
It affects being able to OPEN MY MEDS…even with easy open tops.
It’s scary as hell.

And no one gets it. Ah, my life.

The website this is from https://www.tardiveimpact.com/impact-of-td

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

A Panic Plan

(Update to Attention Seeking? If That’s What It Takes)

Panic Attacks…those ARE hell, right? Like a very special worse than Hell kind of hell?

I honestly can’t imagine anything more hellish than panic attacks at this very moment, although I’m sure something else will manage to bump them down my list at some point today–I’m nothing if not a plethora of health problems, kind of like those bags of assorted candies, only the ones no one likes; chronic daily migraine, depression, anxiety, this Not-Such-Fun new one called Tardive Dyskenesia…and those damned spawns of hell, panic attacks.

In my last post, our intrepid heroine (me) was definitely feeling far, far less than intrepid; she was wrung out and desperate, recuperating from a brutal beat-down by one of the most diabolical adversaries she’d ever faced…Panic Attack.

Panic Attack was a sneaky foe–striking when least expected and at random, sometimes using tactics of other foes to camouflage his approach; a feeling of general unease (borrowed from Anxiety), despondency that a specific situation or life in general would never improve (Depression’s usual expertise), the nagging, irritable, on-edge feeling and vague confusion often felt before a particularly nasty spike in Migraine pain…a few days of these always niggling at the mind was a fine way to remain unseen but to pave the way for Panic Attack’s sudden strike with the coup de grâce of his arsenal–MIND-NUMBING, RELENTLESS FEAR/TERROR (we’ll just refer to that as FEAR for short in the rest of the post…always in caps).

Sometimes, P.A. (Panic Attack) preferred to just drop the FEAR bomb right off the bat (why be predictable, after all? That’s just sloppy villainy) in a sudden and overwhelming attack designed to keep his victim reeling and off-balance.

No matter when or how P.A. attacked, the FEAR strike often had the effect of Increased heart rate, Chest pain, Inability to catch your breath, Dizziness, Tingling feelings, Intense feelings of anxiety. As an added bonus, the victim of a P.A. FEAR strike knows (either during or after the attack, or both) that this FEAR is not rational and they are not in real danger…which can weaken their mental state and make them fear they are going crazy.

Although our heroine was equipped with an Anxiety Shield,

Created by my Spawn, who also knows the anxiety/panic attack battle, as a representation of our Warrior status.

anti-anxiety medication, information on methods to ground herself, and determination to best her foe, she had not yet been successful, and the onslaught of repeated attacks was creating a near-constant state of dread of when the next FEAR strike would come.

And for our heroine and many others who battle this enemy, the FEAR strikes brought yet another effect–a feeling of utter hopelessness while in the midst of a strike that it would never end, that they would never be able to best it, and that the only way to be free would be to give up…permanently.

Yes. Suicidal thoughts.

Perhaps the hardest effect to face, and to admit to others, as often those unable to control thoughts of suicide are treated as if they are thoughtless, selfish people who care nothing for their loved ones to even consider such a thing…sometimes unintentionally by people who mean well, who attempt to point out all they have to live for…and sometimes purposely by those who believe shaming a person will stop them from ‘acting selfishly’ and ‘only thinking of themselves.’

The fear of being berated, shamed, or having their pain invalidated as unimportant or unfounded sadly prevents many people who struggle deeply with these unwanted and intrusive suicidal thoughts from ever reaching out and seeking help, and can reinforce feelings that they are terrible people whose loved ones would be better off without them–tragically, some of those people may go on to attempt or complete suicide.

Our heroine has long maintained that those who reach out for help despite fears that the stigma and misunderstanding surrounding suicide and suicidal thoughts will cause them to be rejected and shamed are the bravest people there are.

And she believes this because she is a suicide attempt survivor…who did not ask for help, either before or after her attempt 20+ years ago, because her fears of being judged were too great.

She believes this because she knows exactly how hard and scary that is, and how long it took her to finally overcome it. “Sometimes one of the hardest things to do is to admit you need help and reach out for it. To do so anyway is courageous,” she often tells others.

And she has an idea…she thinks it might just be a good one; it may not completely defeat Panic Attack, or even halt his FEAR strikes, but maybe…just maybe…it could help keep him from defeating her.

But she’s going to need some assistance, and the nerve to ask for it.

And this time, she’s going to take that step–that scary, hard step that she didn’t take before. Because if ever there was a time to have the strength of her convictions, this is it.

And she did.

Before she could second guess herself, before she could let her fear stop her, she reached out to her friends, and hit the ‘post’ button…

The fateful Facebook post.

Was there a possibility that this post would be interpreted as attention seeking? As being overly dramatic? As being selfish and self-centered?

Of course there was. She knew that because she would have thought it herself in the past, had she been the one reading it (which she isn’t proud to confess).

But she decided she could live with that judgment if it came…because this was her life.

Her life that she’d fought for alone too many times, in battles she’d never told and would always carry scars from; some on her body and some in her mind and heart. Because she was one of the lucky ones who had the chance to see all the things that could get better, and even if some didn’t, to know the things and hold the people that made the fight worth every minute to her.

Surprisingly, what came was an outpouring of support, love, and encouragement. Not everyone could sign on to help her test out her Panic Plan, but every single person who responded still helped. They may not have thought they were doing much, but it meant the world.

And for the moment, we’re going to leave our heroine and go back to the less heroic alter ego, me. But the moral of the lesson is this:

No matter how strong a hero/heroine is…sometimes they can’t fight every battle alone. Look at Thor–he’s a freaking god, but can’t get his brother under control without the Avengers. Iron Man is a tech genius, but his own creation, Ultron, went off the rails and without his team, could have caused even more devastation.

Sometimes in life’s battles, you just gotta have a little help from your friends. And there’s not anything wrong with that or with you for leaning on them.

It all evens out–because won’t you be there when they need you, too?

I’m so, so grateful for mine.

Now comes the fun of putting this plan it into effect. Really, I’m blessed I actually had enough friends step up that the burden will be lighter for everyone, as opposed to having a few taking the brunt of calls…no matter how much you care about someone, it can wear on you to be THE go-to. It’s hard to “see” (in quotation marks because they’re all over the US and we’ve never seen each other in person) someone you care about struggling; it’s painful and there’s no way to avoid that–lessons learned raising two kids with mental health disorders. You want to make it better, and sometimes you can’t.

As it stands, I have enough volunteers that if I had weekly attacks, most of them would get a turn once every 2 months. Not everyone is available 24/7, but when you have more than one to rely on chances are that SOMEONE will be reachable when you need help. A few are last resort volunteers–if no one else is available, they’ve pledged to take up the slack no matter when. Maybe half are estimating they can be there any time, day or night, others are better reachable at specific times of day.

As things get hammered out and tweaked, I’ll update on how it’s working out and what about it works or doesn’t.

Right now, it’s a huge weight lifted just to know I’m working on it…with an awesome support system by my side.

Be well, friends–or as well an you can.

-Selena

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

Allies Wanted

#downtherabbithole #chronicillness #invisibleillness #allies

HELP WANTED:

Invisible Illness Allies.

This position requires an open mind, willingness to learn, loyalty, the ability to be flexible with plans and to not take changes personally, and a caring nature.

Sympathy and pity not required, but attempting to understand that you may never understand what we live with is essential.
References and experience not necessary. We are willing to work with you on anything you need to know.

Please apply with any person you know living with an invisible and/or chronic illness.

– Selena ..

Guest Post: There is Hope in Your Struggle with Panic Attacks

I’ve never done a guest post before, but this write by my friend Lynne Shayko is absolutely amazing. As someone who has been struggling with anxiety and panic attacks more frequently of late, I really relate and think others will as well, whether your attacks are one or more daily or less frequent.

The message of hope at the end is priceless. Thank you, Lynne, for allowing me to share this.

There is Hope in Your Struggle with Panic Attacks

By Lynne Shayko

You remember your first panic attack. Overwhelmed by life, suddenly you struggled to breathe. Your head floated towards the ceiling as you grimaced from the pain at your chest and the tight knot in your gut. As you wallowed in dizziness and nausea, the world vomited color and noise on you, then faded away to a dull blur. Terrified that you were having a heart attack or going crazy, you collapsed under the stress. After it ended, you struggled to find yourself, and prayed it would never happen again.

But it repeated. Another panic attack. The same terrifying sequence of symptoms. Then a third panic attack jolted you. Suddenly you find yourself standing in a hailstorm of panic attacks. Again and again, the attacks hit you with poetic violence, often when you least expect. You desperately try to isolate what triggers the attacks, how you can control them and how you can win this battle. Gritting your teeth, you develop elaborate strategies to beat the panic. You practice relaxation techniques, visualization, and meditation. Repeating positive affirmations to yourself, you put on your tinted sunglasses, your noise-canceling headphones, and the clothes that make you the most invisible. You want to survive the situation without anyone singling you out. With practice you learn to disguise your panic symptoms and become well-versed in excuses for any erratic behavior that slips out. But you still struggle.

After a while, the panic attacks and your strategies feel part of the fiber of your being. Every day you hang up your coat on a rack of memories, and comb anxiety strategies into your hair. Events, places, and songs trigger memories of panic. A parking garage triggers a traumatic memory, so you gather your strength and speak to the impending panic, This is not the same garage. This is a different day. Today I will not panic. Sometimes that works and sometimes it doesn’t.

Infuriated at this invisible war you are fighting, that you never chose to fight, you rage at the attacks. You curse the panic that is filling your life with so much complicated pain.

Part of the pain is loneliness. Panic traps you within your mind, sending you to a place where no one can ever really touch you. Sometimes panic even imprisons you in your house. Tired of fighting panic attacks and losing, often it feels easiest to cancel plans, avoid triggering places, and order takeout instead of going to the grocery store. So you sit alone in your house, calm but missing the beautiful chaos of the life outside your door. You watch the world through social media and yearn to experience it.

Your battle with panic is laced with self-hatred and self-loathing. Every attack feels like an episode of failure. Once again, your strategy to beat the panic failed. You get angry with yourself for canceling plans, for walking out in the middle of the checkout line in the grocery store, for acting strangely and disappearing from your friend’s party. It all feels so stupid sometimes. It is such a simple thing, to go to a store and buy groceries. Everyone else can do it. Why is it so hard for you?

Because you’re not like everyone else. You have an illness. You have a type of illness that can make everyday things difficult. It’s hard because your illness is invisible, but your strange behavior in panic attacks is not.

Right now it’s awful. But there is hope. Panic attacks are difficult and traumatic, but they are not hopeless. And neither are you. You are still the same person that you were before this all started. You’re just sick right now. You haven’t lost yourself. You’re the same person, you are just fighting a complex and difficult illness right now.

Your struggle with panic attacks doesn’t make you weak. Each panic attack is a small trauma. You are enduring a hailstorm of trauma, and you’re still standing, you’re still reading this article and rehearsing coping strategies. You’re still getting up every morning and braving the world again. You are fighting an invisible dragon, and you are still holding on to the sword.

Over time, as you refine your coping strategies, as you find a way to balance your outside and inside worlds, things will get better. If they aren’t, if your world is getting very small and you feel like you’re drowning, get help. Find a therapist or a support group. Reach out to friends or family members. Read up on cognitive behavioral techniques to beat panic disorder.

You may feel very alone right now, but you are not alone. Many people have fought this same battle. They have suffered. But many have persevered and overcome, and you can too.

Try to be kinder to yourself. Don’t beat yourself up for breaking commitments due to panic attacks, for leaving places early, and for acting strangely. You have an illness. This is not your fault. If you went to a party and suddenly got sick, would you feel guilty for leaving? If you sprained your ankle while shopping, would you feel guilty for leaving to get medical help? Having a panic attack is the same thing, a medical problem, that comes on suddenly, and requires you to rest in order to recover.

Things are hard for you right now. You are bearing a tremendous weight. But don’t give up. You can make it through this. You may just need some extra help.

When this is all over, you will emerge a warrior. You endured a traumatic series of panic attacks, a pattern that tried to keep you housebound, and still you kept your chin up, you found healing strategies and people to come alongside you. You will emerge from this chapter of your life and rejoice in your salvation. In that day, the world will be wide open for you, and the air will have never tasted so sweet.

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One of my poems…I think it fits well with how a panic attack feels to me personally. – Selena 

Chester Bennington of Linkin Park has died by suicide

#DownTheRabbitHole #chesterbennington #restinpeace #suicide

Chester Bennington of Linkin Park has died by suicide at age 41.

I’ve been down with the Migremlins all day, and just woke up to this news. Ļinkin Park is one of my favorite bands, and their music has brought me through so many rough times. It resonates deeply with me, both in emotions I’ve dealt with in the past and currently. It grabs my soul and makes me feel less alone, and speaks to my heart.

As a suicide attempt survivor and suicide prevention advocate, it wrenches my heart every time I hear such news of another loss to suicide.

It also raises the increased need for awareness and the need to eradicate the stigma attached to suicide.

Attached to this post are some statistics and information about suicide and suicide prevention, along with resources for more information and lifeline/crisis text numbers.

Mr. Bennington…I wish you had had an angel to roam the shadowed places in your mind. 😥

Be safe, friends. Please. – Selena

http://www.cdc.gov/violenceprevention/suicide/index.html
https://suicidepreventionlifeline.org
http://reportingonsuicide.org/recommendations/

“Suicide is a serious public health problem that can have lasting harmful effects on individuals, families, and communities. While its causes are complex and determined by multiple factors, the goal of suicide prevention is simple: Reduce factors that increase risk (i.e. risk factors) and increase factors that promote resilience (i.e. protective factors). Ideally, prevention addresses all levels of influence: individual, relationship, community, and societal. Effective prevention strategies are needed to promote awareness of suicide and encourage a commitment to social change.” (From http://www.cdc.gov)

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The Masks We Wear

“I’m good…not great, but I’m okay.”

Are you really?

Well, no. I wasn’t.

But I didn’t want to worry anyone…didn’t want to bring them down with me.

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Because that’s what we do, don’t we?

I wrote an article about it for The Mighty last September…about The Pretender Mask. The smile that hides the pain. The “I’m fine!” on days we definitely are not fine. The tough I’ve-got-this front when we’re falling apart inside.

About how I wasn’t wearing that mask any more to hide my illness.

So why do I still find that I’m wearing it at times?

Probably because at the time, I was thinking in terms of my “physical” illness. I’ve stuck to that one–I see no reason to hide it. But as much as I believe that many mental illnesses are often physical illnesses with a biological cause, and that they are every bit as important as physical illness…it seems I have trouble owning up during rough patches with depression and anxiety.

In other words, I keep finding myself behind the mask again…and again…and again.

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Skimming the surface during some of my hardest moments…not wanting to worry people…not wanting to talk about it.

Not because I’m ashamed or embarrassed to be struggling, but because it’s harder to SEE them in action. Because…well, they hide. And they hide so well that I don’t always realize I’m in the Rabbit Hole until I start climbing out.

Depression and anxiety are champion Hide-and-Seek players.

I can feel my physical illness; there’s no way not to.

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Physical pain day in and day out demands notice. Sometimes it demands so much notice that other things get ignored or go unseen. Sometimes those things just blend into the world of chronic illness so well because it seems completely normal to feel them when your illness gets the upper hand. Who wouldn’t be stressed and depressed?

I’m not saying this to make excuses. I’m saying it because depression is sneaky…and it lies. And sometimes it even hides itself from us by camouflaging itself as background noise until it starts making its own demands to be felt.

So I’m no longer saying I never wear my Pretender Mask. It feels like hypocrisy to say so when I realize I’m taking it off too often.

But I am saying that I’ll keep trying. I am saying that I’ll continue being transparent, even if it’s transparency after the fact.

Because my struggle is the struggle of so many of us…and if my struggle helps someone else feel less alone in theirs, it’s worth baring my not-so-pretty pieces of me.

– Selena

Grief and Perseverance

The 12th of every month is hard for me…and this is why.

Grief.

One five-letter word carries a punch to the heart like nothing else.

Grief means loss. Grief means pain and suffering. Grief means mourning.

Grief means someone or something you love is gone. Grief means a gaping hole in your heart.

Grief means that things will never be the same again.

I see posts about the “stages of grief” and the “grief process” — and I hate it.

It makes it sound so sterile, so clinical, so neatly organized.

I hear people wondering when someone will “get over” or “get past” their mourning and “move on with their life” — and I hate it.

It makes it sound so easy.

It makes it sound as if having something or someone ripped out of your life isn’t profoundly life-altering, as if you aren’t living and breathing every day with something that has wounded your soul, as if you’re defective when someone feels your “official mourning period” should be over.

As if the space in your heart that has someone’s name on it should be boarded up, or worse, cleaned up and ready for occupation, all the cobwebs of pain swept away.

As if it didn’t matter.

As if that space could be filled up and smoothed over by time like patching a hole in the wall.

My niece, Sydney, died in a car accident 15 and a half months ago on her 18th birthday.

One moment, we were posting birthday wishes on her Facebook page, the next she was gone.

My sister’s first child. The first to be imagined when taking pregnant belly pictures. The cousin who was a few months older than my son, who grew up with my children, who was smart and goofy and stubborn and believed things would always get better if you persevered and hung on. The older sister to two other beautiful girls and the one who usually had a kind word for anyone struggling.

I’ve learned things about grief I never thought I would and that I never wanted to, and I’ve watched my sister suffer immeasurably.

Time doesn’t heal all wounds, and some scars like to reopen.

It’s watching your sister in pain you can’t take away.

Ever.

Grief isn’t something that we “get past” or “get over” so much as we learn to live in spite of.

It’s learning to breathe and walk all over again. And again. And again.

It comes and goes like waves. The holes in our hearts are like the sand on the beach. It erodes and it fills with the tide, but it’s never actually exactly the same again.

And like the tide, it doesn’t really stop.

And the truth is, you don’t want it to. Because grief is the price we pay for deep love. Mourning means we had something worth missing.

And that’s OK.

Because the alternative is never having had that beauty in your life.

Some days — even years from now — the pain will stun you, but some days you can smile at a memory without it being through tears. Some days the pain of them not being here will be a physical ache, others you’ll feel as if they’re smiling and standing right by you and others you’ll feel numb.

Some days you will be OK, and some days you will not.

And some days you will be all of those at once.

And that’s OK, too.

See, the thing that the “stages of grief” forgets to tell you is that it’s a continuous cycle rather than a procession from Door 1 to Door 2 to Door 3 and so on. And not everyone will visit those stages in order, and some will skip a door or two. There’s no time limit on grief because there’s no limit on love, and there’s no right or wrong way to mourn. Those feelings you think you should be over aren’t right or wrong — they just are, they’re valid. And letting yourself feel them is a part of healing.

Sydney believed there would be better days. This is my tribute to her. I believe sharing this will help some of us persevere until we find them.

Persevere

Persevere
Though the road be
Paved with heartaches
And disappointments,
Lost chances,
Faded dreams —
For each new day
Brings new chances,
Brighter days,
Another dream,
And new choices.
Persevere
And LIVE life
For all it’s worth
In joy and in sorrow,
For the next day
May be yours.

In memory of Sydney 3/12/1997-3/12/2015.

(Originally published on The Mighty, June 16, 2016.)