by Band Back Together | Aug 24, 2015 | Encephalocele, How To Cope With Post-Traumatic Stress Disorder, Neural Tube Defects, Post-Traumatic Stress Disorder |
This morning, once again, I woke up with my pillow soaked with tears, the sobs still fresh in my throat. I wiped my face off with my sleeve, as I sat up, trying to remember what dream I’d had, what had made me so bitterly sad that I’d wept in my sleep loudly enough to wake myself. Nothing. My memory banks came up with nothing.
I sighed as I changed my pillow case. Normally I dream about new and exciting ways to mock John C. Mayer, and although John C. Mayer could have been the reasons for my sobs (Hey, “Your Body is a Wonderland” is a terrible song), I don’t think it was.
This is the fifth time in as many days I’ve woken up with a wet pillow case. On the rare times I can fall asleep (a hearty fuck you goes out to insomnia), this is what I’m repaid with: night terrors.
Amelia’s appointment yesterday with the EI evaluators went as expected. She’s ahead in some areas, behind in others. It’s the medical equivalent of a push and it’s certainly not something that keeps me up at night, her inability to perform quadratic equations and properly discuss string theory aside.
I’ve managed to buy her a birthday present and pink cupcake mix for her birthday on Friday (still haven’t done anything for a big blowout bash), both of which should delight her. I’m thrilled that she’s going to be thrilled by this. Everyone should be so lucky as to have pink sparkles on their birthday cuppity-cakes.
And yet I’ve spent the last couple weeks talking through clenched teeth, the most minor of infractions setting me off, sending me into a blind panic. A dead weight has settled onto my chest there’s an omnipotent feeling of cosmic not-rightness. Everything feels wrong. Nothing is wrong, yet everything feels wrong.
My feelings make no sense to me.
I know what this is. It’s PTSD. Post-traumatic stress disorder. I hate to even write those words out because I see them and I know someone is going to be all, “YER NOT A VET, YEW WHOR,” and then I’m going to feel worse because I’m already feeling guilty about feeling the way I do. I have the Girl That Lived and still I have PTSD? Certainly, I do not have a right to those feelings.
And yet I do. I’m as entitled to my feelings as the next person
Really, I liked it better when I pretended I had no feelings.
by Band Back Together | Aug 10, 2015 | Encephalocele, Happiness, Internet Trolls |
The first time I got a blog troll on my personal blog, I ate a celebratory cupcake and washed it down with a tall Diet Coke on the rocks. It was probably, in hindsight, a spammer (just like my first comments , which I think I framed somewhere were) but I didn’t care. I’d made it! Someone, somewhere hated me!
Then, I got someone who copied bits out of my blog posts. Actual bits of my posts removed and pasted onto hers, like it was no big deal. Someone else, a watchdog, alerted me. My daughter had just been born ill and I wasn’t about to deal with it right then. Talk about bigger fish to fry. I like to think I would have fist-pumped, though, and perhaps celebrated with a tasty bowl of edamame or a wee Uncrustables.
Later yet came the loon who created several blogs composed of entirely stolen posts filched neatly from other bloggers, myself included, who I did fight. Google claims they shut her down, but I don’t care to check because I don’t want to drive her traffic up. I still have, somewhere on my desktop, screenshots of all of your comments on her blog, just because they were so full of the awesome, by the way.
You don’t fuck with the Pranksters or The Band.
Since that first Internet Mole Person (troll), I’ve gotten a handful of others.
Generally, they make me laugh.
There are weeks when they do not.
Like anyone, I’m a person, and I have bad days, and bad weeks, and sometimes I say and do the wrong things. In fact, if I had to describe my blog, I’d say something like, “THIS is where I bow to the alter of my wrongness.” I don’t have a publicist or an adviser to tell me not to do something because, uh, why?
This week, I’ve gotten a couple of nasty-grams that hurt my feelers. I know bloggers are “supposed” to pretend like it doesn’t matter; like we don’t care, like it doesn’t hurt our feelers when people call us names or insult us, but it does. Of course it does.
Like it or not, this is my life.
Certainly, it’s my steaming pile of guts spilled here, my wrongness on display, and my inconsistencies on the table to be judged and if I don’t like it, I can absolutely pack up shop and go somewhere else. That’s the answer, right? To delete my blog in a stompy flourish? Go back to being Becky, In Real Life? That’s how to handle hurt feelers?
Not so much. At least, not for me.
Blogging, writing out your pain, and sharing it with the world, is an act of bravery. When you put yourself out there, especially waaay out there, you stand a very real chance to be very hurt or very disgusted by human nature. The farther you stick your neck out, the worse the inevitable hurt* may be.
ANYWAY.
What I think is worse than any troll are the people who get you entirely wrong. Because you’re left standing there stuttering, “but, but, BUT, that’s not what I meant AT ALL.”
These are the sort that make me sort of question myself in a way that I seldom do (perhaps I should): Did I say it wrong? WAS I wrong?
And most importantly: why the hell do I do this at all? I see that typed out here, on my screen and it looks like I’m being all 15-years old and dramatical feet-stamp *woe is me, OH NOES* and I’m (for once) not.
I mean that genuinely: why do I do this? Why do ANY of us bother?
It’s certainly not for the billions of dollars in my bank account that still haven’t been deposited, nor is it for the notoriety and free swag, or to be able to tell someone that “I blog, and it’s really, really cool.” Because I swear, if I told someone that, they’d be all, “um, huh? Did you just insult me?”
No. It’s not for that.
It’s because it all matters. Every word I write matters. To me. To (maybe) you. These words are what define me, what make up my life, and what bring me joy. Whether or not someone else finds them and finds joy in them too is inconsequential because it brings me joy. I write because I love to. I write because that is what I do. I write because it matters. Every comment I make, every life I touch, it matters.
That is why The Band exists.
It’s why we pay for servers to handle our traffic and keep your stories edited and fresh. It’s why we’re always looking for new volunteers. It’s why we use our social media accounts to share your stories. It’s why we cry with you, we laugh with you, and we dust you off, and get you to your feet to fight another day. It’s what we do. For you and for every life you touch by the words you write. Why our volunteers help keep the lights on and guide you to us. We all know the truth of what it is that we do here: it all matters.
Everything we, what you, do. We know, above all else, this to be true:
It all matters.
Everything you do. Every single thing.
It all matters.
*I’d like to tell you guys a secret. We do moderate comments because you never do know if/when an Internet Mole Person may scurry up to shit on things. It’s our way of protecting you and every other person who uses the site from the ugly bits. We moderate so that you can share your ugly bits without fear.
With the exception of a Jehovah’s Witness trying to convert The Band into their, uh, program? Church? Erms, I don’t know much about it. But with that exception, I have seen maybe 4 comments deleted and those were people trying to raise money or promote their own blog. You just don’t get any hate. Way to be awesome, The Band.
by Band Back Together | Aug 7, 2015 | Gastroesphogeal Reflux Disease, Irritable Bowel Syndrome, Self Injury |
It’s been a while since I’ve been back here, and thought I’d update.
The last year has been hell for me, but I am emerging as a different person. I spent last fall in and out of hospitals and self-harming constantly. Things came to a head when I moved to Florida briefly. I would cut multiple times a day.
I finally decided to come back to Texas. That, along with the medication changes have made a world of difference.
In April, I started having disturbing digestive symptoms. I finally found answers with a restrictive diet and prescription treatment for Irritable Bowel Syndrome (IBS) and severe Gastroesophageal Reflux Disease (GERD.)
I am now employed for the first time in eleven months, and that’s going well. I’m a very different person now. I no longer have a desire to cut, and I am more than four months clean.
by Band Back Together | Aug 5, 2015 | Anxiety Disorders, Coping With Anxiety Disorders, Coping With Depression, How To Help A Friend Whose Child Is Seriously Ill, Major Depressive Disorder, Mental Health, Mood Disorder, Pediatric Caregiver, Stress |
Watching your children struggle is hard on a parent.
This is her story:
I sometimes say that I won the craptastic mental health lottery. I’ve had my share of minor struggles. My children, on the other hand, have dealt with much more than I did.
My daughter is twelve, and has just returned home on Wednesday from her second hospital stay in four months. I am confident really believe hope like hell that we’ve gotten to the heart of identifying her disorder so we can do the right things to treat it. She’s smart and creative and beautiful, and I want everyone to know that about her, not focus on her anxiety or her awkwardness or her peculiar outbursts.
My nine year old son was the one who pulled us kicking and screaming into the world of mood disorders. I’ve done lots reading (books, websites, you name it) about kids like him and the myriad of Disorders (the conditions are often too big to be suited to a lowercase “d”) that could have caused his behavior. Always one to resist a label, Hoss does not fit neatly into any of the diagnoses that generally cause the behaviors as they manifested themselves in him. Welcome to “mood disorder- Not Otherwise Specified.”
He’s witty and brilliant and is such a computer whiz that I could see him as the next Bill Gates.
My baby boy, who is seven years old and therefore long past being a baby, is the hardest to pin down. He may be quirky. He may be something more serious. His stubborn streak and need for routine may not be OCD or Aspergers, but no one has ruled it out yet either. Little Joe, he of the unbelievable memory and soothing routines, is still a wild card.
Most mental illnesses have some genetic link, although there are always families with no history who have a child with some issues rising to the surface. What would be the odds of having not one, not two, but three kids with these disorders?
Like I said, maybe I just won the lottery.
by Band Back Together | Jul 27, 2015 | Adult Children of Addicts, Alcohol Addiction, Grief, Help For Grief And Grieving, How To Cope With A Suicide, Partner/Spouse Loss, Stroke, Suicide |
There are only so many things a person can take before they break. Sometimes, there’s only so much a person can take.
This is her story:
When our son was a baby and you went through that rehab program, they sat me down for Family Day and made me come up with an ultimatum to “help” you with your sobriety.
“If you go back to drinking and X happens, I’ll leave.”
I hated it. I didn’t want to say anything like that. I believed there was nothing you and I couldn’t get through together. We love each other very much, and I could never picture a scenario where I would need to leave you.
Since then, you’ve had several medical scares, three suicide attempts, and a second, more intense rehab. You had that spell last winter, where for three days you had no idea who or where you were. Then, after a year of sobriety, you went back to drinking again. I’ve been there for the hospitalizations, your treatments, the roller coaster of your mental illness, and the nightmares caused by the traumas of the things you have seen and done in your past.
I stood by you and loved you through all of it.
I can’t do it anymore.
It’s been a very long time since I’ve been able to really confide in you anything going on with me. You can’t handle it. I had a major emotional upheaval last summer and I can’t even tell you about it because you would never be able to deal with it. It’s still continuing, and it is gaining in intensity.
It’s causing me constant distress, and you have no idea. Because of that, I had a nervous breakdown last winter. I was even having panic attacks. I’m taking antidepressants and seeing a counselor every week to deal with what’s going on with me. You know about my counseling and medication, but you don’t know the real reason why I need them.
While I was still fragile from my nervous breakdown, another horrible incident happened. We were constantly being taken advantage of by your friend. At one point, I was sick with the flu, but you still couldn’t say no to his request. But due to your drinking and your mental illness, you were unable to deal with the responsibility you had taken on that night.
Still very sick, I had to go take care of it and I got stuck in a blizzard. Between my emotional stuff, the flu, all the constant worry about you, and the terror of the white-out blizzard, I had a mini-stroke the next day.
You couldn’t even handle calling for paramedics even though I was incapacitated.
What if it had been something worse? What if it had been a full-blown stroke, or a heart attack, and being able to know you have to call 911 for me could literally mean the difference between my life and my death? What would you do if I died? You can’t even take care of yourself, how are you going to take care of the kids and make sure the bills get paid?
You’ve admitted that you have no hope of being able to quit drinking. You’ve written off rehab, calling it a “temporary fix.” You won’t go to Alcoholics Anonymous meetings and you won’t take any steps to try to stop drinking on your own. Then there was that one night last spring when you were drunk and admitted to me that you still think about suicide all the time.
You promptly denied it once you were sober, but considering that you listed all the ways you had thought about doing it, I’m pretty sure your confession was the truth.
Without you finding a way to stop drinking, it’s only going to continue to get worse and worse. It’s to the point now where we live inside the story of Dr Jekyll and Mr Hyde because you’re a totally different person when you’ve been drinking all day on the weekends.
I know your brain is a scary mess. I know I couldn’t handle five minutes inside your head. You have been through things so horrible that I can’t even process them. It’s no wonder the worst horror movie doesn’t bother you – you’ve been through worse.
It feels like the Grim Reaper has been following you around as long as I’ve known you. On top of all your mental and medical issues, you’re so accident prone. I’ve lost track of all the times I felt like I was looking at the last months, weeks, or even hours of your life.
It has all led to me having to think about your death constantly. I’ve had to plan for the worst. If you were to die in your sleep tonight, I know exactly what to do. I know what to do in regards to your funeral and burial. I know where the kids and I will go to mourn, lick our wounds, and then regroup. I have a plan for what will happen once I get back on my feet. I have hope for a beautiful future.
That future no longer has you in it.
Our kids need at least one stable parent. If things keep going the way they are, I won’t be mentally or physically healthy enough to take care of them. I can’t keep worrying about you. I can’t keep taking care of you.
You and I both believe in an afterlife. I believe that once you have died, you will finally have the peace you’ve never had. I hate that I think about your death all the time. It makes me sick that I have to admit to myself that your death is what’s best for all of us – you, so you can have peace, me, so I can become healthy again, and the kids, so they don’t have to watch you destroy yourself.
I’m purging the house because I don’t want to move all that crap in the basement again. I’ve started a list of the things I will sell when you’re gone. I’ve made my arrangements for where the kids and I will go. I’ve looked into schools there for them. I’ve even figured out places I’m going to apply for jobs. And meanwhile, I pray that God will be merciful and let you die peacefully in your sleep.
Because I know there is only so much more I can take. If I have to break down and just leave, it will break your heart.
And that will definitely lead to you killing yourself.
by Band Back Together | Jul 22, 2015 | Caregiver, Chronic Illness, How To Help A Friend With Chronic Illness, Medical Mystery Tour, Migraines, Pain And Pain Disorders |
Except…
For flippin’ migraines.
Growing up I got one in a blue moon and really, they were bad, but I wasn’t stressed out about them.
I’d just get one and think, “Oh, this sucks. I have a migraine.” And I’d take some medicine, drink some really strong instant tea and it would go away. Later, I’d get them and take a cocktail of Benadryl and ibuprofen to go to sleep and it wouldn’t be a big deal.
Five years ago, I woke up one morning, laid in bed for a little bit with my husband, got up and started to get ready to leave town for my grandmother’s funeral. I bent over to pick something up off the floor, stood up and next thing I know I hear my husband yelling “Jennifer! Jennifer! Open your eyes and look at me! Jennifer!” What the heck? Why? Then I realize I’m in a really weird position.
One doesn’t normally find herself sitting in her laundry basket.
Then I realize I’m still naked. Then I realize I need to throw up. Then I realize the only other time I’ve seen my husband so scared was when I passed out from a fever a couple years before. And can I say that since my step-son’s best friend at the time was one of the EMTs working, I’m really happy my husband didn’t call 911 so he could find me naked in my laundry basket? What does it say about me that I’m more worried about that than the fact that I was unconscious and naked in my laundry basket?
So that set off a round of doctors, emergency rooms, MRIs, CT scans, and heart monitors. And daily migraines. Yep, I said daily migraines. My husband’s thought is that I hit my head against the wall when I passed out, and maybe it knocked something haywire even though my head didn’t hurt and no damage has been found. The best news out of all of this is that I actually have a brain. I have pictures. It’s there. Contrary to some people’s belief I do have more than just empty space between my ears.
So I went 6 months having daily migraines. I was taking a cocktail of medications to manage the pain, because these are not normally the type that are aided by Imitrex or things like that. I had to take an anti-inflammatory, a pain medication, muscle relaxer, and my dear old friend Benadryl to get rid of the pain. And I needed to sleep. I was working in a place that had a lot of chemicals, so after 6 months of working half days we decided that it was best if I found a new job. So I did. And my migraines have dialed down to a couple a week.
I have two kinds of migraines, which is part of my problem.
I have the classic which is where you get the aura and have squiggly lines in your vision and it feels like someone is jabbing an icepick in your brain. Those are rare for me. Then I have my normal ones where it feels like the angel of migraines came with his boxing gloves to punch me in the left eye. It’s always the left side. And either I wake up with it or suddenly I realize, “Oh, hey, I have a migraine”. There’s no warning like the others. And with my normal ones there are three levels of pain. “Oh, hey, my head hurts. Ok.” is the mildest. Then there are the ones like today, “Crap my head hurts, but I can function so here I am, but leave me alone”. And then the worst are the “Oh freakin’ hell, somebody kill me now!”
Recently, I’ve been introduced to a new circle of hell – the DOUBLE migraine. Really?
Because the others weren’t bad enough? This is where I get one aura, my head starts to hurt really bad, then after that aura goes away I get another one about 20 minutes later. Seriously!
The pain from that is excruciating and double.
Along with my own personal pain and agony that goes along with these migraines, I have to deal with other people. Most of my migraines are like today. I look fine. I’m at work. I’m functioning. I’m typing a flippin’ blog for crying out loud. If you’re paying attention, I look like I’m a little off. But to the casual observer I look fine. Something may come up and I’ll say “Oh, I’ve got a migraine.”
But when they’re bad enough I need to call in to work, load up on drugs and sleep all day, I get “but you could work the other day”. Yeah, out of sheer force of will and there was too much I had to do. And then there’s my husband. He’s the only person on the planet I wish would get just one migraine. Just one. I don’t get them just to ruin his plans. I don’t get them because I just want to miss a day of work. I don’t get them to get out of cleaning. There are the granddaughters. God bless them. I hate it the most for them. There are times it is impossible for us to be in the same house when I have a migraine. And unfortunately, they’ve learned to ask “Do you have a headache?” when they come over and something seems off. They still need to be able to be little girls, so I try to tell whoever is responsible for them that they don’t have to be quiet and if they want to come give me a hug it is really okay. But most of all, it’s the people that want to offer me solutions. Like I haven’t tried everything already. And 5 1/2 years later, I have a pretty good idea what causes them, but you just can’t avoid the weather. Although, I kinda like my husband’s ex-mother-in-law’s idea…medicinal marijuana. I really hate being perceived as a whiny-a$$ baby who complains all the time, so I don’t share with many people.
So there’s my migraine rant. I hate them and they hate me. I hate that it inconveniences others.
But there’s nothing I can do about it.
