Mental Purge

Progress is being made, but it feels like I’m walking through waist-high molasses much of the time. I can see what needs to be done, and I’m aware that I’m moving forward, but it feels like it’s taking for-fucking-ever, and nothing really seems to change.

I wake up tired each day, whether I’ve slept 6 hours  or 8, and wonder if I’ll be able to accomplish anything of substance. Will I be able to motivate my daughter to get up and do anything? Anything at all? A bath, maybe? Empty the dishwasher? Get dressed? Sometimes I can tell right away that there’s not much point to prodding her, she’s just going to dig in her heels, and keep her ass planted in her chair.

This is not at all where I thought I’d be at this stage of my life. Of course, it’s not where I thought my daughter would be, either. None of us could foresee the shitstorm that epilepsy would unleash on our lives, how it would completely turn our lives inside out, and put a giant question mark on our entire family’s future.

Now that she’s 22, and we have a president who wants to gut insurance protections, and eliminate the ACA, we’ve gone forward with applying for Medicaid for our daughter. Our plan had been to keep her on our employer funded plan as long as possible, but we feel our hand has been forced, and we can’t take the chance that Rachel could be uninsured. So, she was approved for medicaid, which will be her secondary insurance, until/unless she losed other coverage, and then it becomes primary. That is, IF our esteemed leader doesn’t manage to gut the Medicaid program to the point that the state coverage is damaged.

Once again, it’s two steps forward, one step back. We try to do the right thing. We don’t want our daughter to be a drain on the taxpayers of our state, or our nation, but her well-being comes first. We continue to do what we can to help her move forward, hoping that someday she’ll able to care for herself, but trying to prepare the world around her for a future that includes Rachel needing state support and services. I can’t even imagine what would happen to her if her father and I were no longer here. We have family who would take her in, but they haven’t had direct care of her, so have no idea what it takes to keep all her appointments, meds, doctors, insurances, etc. straight.

I would love to have an income, but needing to be with Rachel all the time makes that almost impossible. I do sell on ebay and Bonanza, but it’s spotty, and I don’t always have the time to manage that as efficiently as I would need to, in order to actually make money at it. I also applied for the part time phone support job at Amazon, but after having the application accepted a couple of months ago, I haven’t heard anything else. I do wonder if I’d actually be able to manage more than a few hours a week at that, anyway, but it’s nice to dream.

Hell, I’d love to be able to go shopping by myself, when I want to, even in the middle of the week, without having to worry about leaving Rachel at home, which we can’t do for more than a quick trip to the neighborhood grocery, nevermind leaving her long enough for me to go clothes shopping. I have to save my shopping trips for the weekend, when the crowds are the worst, and even then I make the trip as short as possible, so I can get back home, and quietly resent my life. It sucks.

I wish I could laugh about all this stuff, but it’s just too immediate, and too huge. I miss the days when Rachel was still in school, and we felt like we had all kinds of time to help her become more independent. Now it’s starting to feel like she’ll never be able to live away from us, and we’ll all be stagnant together…forever.

So, that’s my uplifting thought pattern for today. I used to be such an optimist. Life is slowly, but steadily, beating that out of me. I miss that old me. I even put down the crochet projects I’d been enjoying so much. It might be time to just go pick it up again.

Okay, Well, Maybe A Few

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I bought this amazing coloring book; Curse And Color. It’s very therapeutic, and funny as hell. I have also purchased a box of 100 random postcards, and a big box of 48 colorful pens. I have lately alternated between coloring, and writing to our elected officials. I am trying to balance kudos with discontent, but there’s a LOT more discontent lately.

I’ve also learned that the Russian owners of Livejournal intend to enforce their policy of not allowing “promotion” of LGBTQ topics, so have moved all my entries from there to Dreamwidth. I hadn’t used Livejournal in several years, but was considering picking it back up when this happened. So, Dreamwidth it is. I like having a place like that, where I can share more intimate thoughts, with a very select group.

As much as I would love to truly be able to say “Zero Fucks Given,” I’m just not there yet.

Tastes Like High School

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Just a little nightcap

In the glass pictured above is butterscotch schnapps, a/k/a buttershots. This is my new favorite nightcap. It’s sweet, mellow and warm, and tastes like those butterscotch discs we all know so well. This is a new treat to me, as I had never tried it until about 3 months ago. At that time, I poured a small amount for my husband to try, and his first response was, “It tastes like high school.” If I had to choose any taste with which to associate high school memories, it would not be butterscotch, but as it happens, Husband and friends would swipe whatever alcohol they could from one of their parents’ liquor cabinets and often it was butterscotch schnapps.

I was enjoying my drink last night, while reflecting on various events of the past week, and sorting them into the rather jumbled containers in my mind. I keep two somewhat active blogs; this one, and another on a different blogging site, which is used to chronicle my daughter’s life with epilepsy. It’s open to everyone in our life, and is a place outside Facebook where I can more freely express the emotions surrounding our journey. I do not feel that it is the place for me to share my political views, except as they would directly impact our daughter and her care. This blog is where I can let it all out; all the fear, all the angst, all the rage, and all the doubt. This is where I feel like my random, messy thoughts can be safely deposited, possibly for future reflection, but mostly just to get them out of my head.

This week’s jumble includes the many home improvement projects we’ve embarked upon, and their associated expenses, new carpet installation, the painting of a living room wall, the notary who is coming to witness the signing of the loan agreement that will pay for all this work, and so much more. The list of work that needs to be done is daunting. But it does need to be done, both for our comfort and safety, and if we hope to ever sell this place. Some of these are structural issues, which can’t be ignored.

Always in the background of my mind are concerns for my daughter. No matter what else is taking place, no matter the urgency of any given situation, her immediate needs take precedence. Any plan we might have for work done on the house, meetings with bankers, phone calls requiring our attention, will be altered, or dropped altogether, if our girl has a seizure or indicates a pending panic attack. Everything else falls away, and she becomes the focus of our energy and attention. If she needs to rest, all other activity either slows to a crawl, or comes to a full stop. If she’s napping in her room, I will make every effort to keep the house quiet, so she can rest well, and hopefully be able to handle some ruckus later in the day.

Is this frustrating, over the top, and annoying? Yup, sometimes. I have things I need to get done, and I want to get to them, and get my list pared down to a reasonable level, but if I try to push her to cope, it will often end poorly. So, I take a few deep breaths, put on my patient face, and work on whatever I can that requires a minimum of noise and movement. When I’m less irritated by life’s circumstances, I remember that she’s a gift, my precious only child, and she didn’t ask for any of this. Her life is predicted to have a shorter span than mine, and I live with a chronic autoimmune disorder. She could be gone between one breath and the next, and there would be no evidence of the cause of death. SUDEP is the boogeyman in our home, and we are ever vigilant. But, I digress.

Husband and I were talking about the work we’ve done so far, and what yet needs to take place, in which order, and when we’ll have the time and resources to get it done. The living room is complete except for some plaster work that needs to be patched, and perhaps the purchase of new drapes. It is currently our favorite room in the house, and has a peaceful, warm vibe to it, somewhat reminiscent of the beach. Warm, sandy tones in the carpet, furniture the color of faded driftwood, and a wall that almost mimics the color of beach grass. I want my home to be a haven, and this room is a good start.

I met my husband just two weeks after graduating from high school. That was almost 34 years ago. We’ve been married almost 30 years now, and I can safely say that there is no way in hell that 18 year old me would have been able to fathom the life we’ve lived, and all the shit we’ve been through. If that cute guy I met had handed me a book of the life we’d have together, would I have read it, laughed, and thrown it back in his face, or would I have accepted the challenge? I’m pretty sure I was stubborn enough, even then, to take up the gauntlet, pick up my sword, and charge into the fray.

You Think You Know Someone

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My maternal grandmother is 102.5 years old. She is feisty, funny, and sometimes aggravating as hell. She is still quite mentally sharp, and lives in a retirement complex, where she cares for herself without much assistance. I have adored her all my life, but in November she really broke my heart.

Grammy has quite a bit of money invested in the stock market. This is money she has long planned to bequeath to her heirs, my mother and uncle. She sees no reason to go ahead and make any gifts before her death, even though it would mean that Mom and Uncle could avoid paying much of their inheritance in taxes. If Grammy could control that money from beyond the grave, she would. This is, by far, her most aggravating trait.

In the months leading up to the election, Grammy had assured me that she would not be voting for Trump. She wanted Bernie, and when he didn’t get the nomination, she become one of the Hillary-haters, and said she wouldn’t vote at all, as did my stepfather, who is also now on my shit list. My uncle started talking to Grammy about how under Trump her investments would increase, and that was all it took.

What hurts about this for me is that Grammy is well aware of the struggles my family experiences, due to my daughter’s disability, and her inability to work as a result. Daughter is now 22 years old, and though we are aware that she only has until age 26 on our insurance plan, we were looking toward her being able to receive Medicaid benefits at that time.That plan may now be out the window.

I saw Grammy yesterday when my family visited my Mom’s new rental home. She asked me what I thought of the new healthcare plan being proposed by the republicans. I told her that I believe it will hurt my family. She countered by saying that they are keeping two key provisions; coverage to age 26, and no preexisting conditions protection. I asked her what happens when my daughter ages out of our insurance coverage, and there’s no Medicaid because the funding to states has been slashed. She didn’t have an answer, but at least the stock market is doing well, and her investments are growing.

This is a woman who has seen my daughter have seizures, was at the hospital with us when we wondered if our little girl would live through the night, helped us scrounge up items for a huge garage sale, so we could earn the money to pay for a Vagus Nerve Stimulator implant, and gives my daughter $20-40 every time we see her, just because. She knows we are a single income family, with medical bills up the wazoo, and a fear of what the future holds for our child. But she voted Trump, in the hope of further enriching herself, even though it’s at the expense of our child, and others like her.

My stepfather also said he wasn’t voting, because he didn’t think Trump was a good idea, but in the end bought into the “God, guns, and country” bullshit. The only saving grace here is that we live in a very blue state, and their votes didn’t make much difference in the end. Still, it feels like such a betrayal, by two people who tell me they love me, ask worried questions about my daughter, say all the right things to my face, and then made a choice in leadership that can only hurt us.

This isn’t drama. This is my daughter’s life. Without insurance coverage, she will not be able to access the level of care necessary to keep her healthy. We own our home, though we have a couple of mortgages on it. Foreclosure and eviction take several months, so I supposes that’s one plan. Let’s hope it doesn’t come to that.

 

 

 

There’s Just No Prepping For This

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GiR of Invader Zim

Not so long ago, and in this very galaxy, I silently mocked the people who talked about needing more firepower in order to protect themselves, in the event the government ever turned on its citizens. I’m not laughing anymore. I found myself wondering what we’d do if soldiers showed up at our door, and demanded we come with them. In reality, even though we do have a couple of weapons for home defense/target shooting, and I know how to use them, we wouldn’t stand a chance. The military has the really good stuff; airplanes, bombs, tanks, and vast numbers of people, armed to the teeth, and trained to follow orders without question.

I believe in a minimum level of emergency preparedness. We live in a seismically overdue region, and most folks expect us to experience The Big One (a magnitude 8-9 earthquake) any minute now. We’re encouraged to stock up on water, canned goods, medications, and first aid supplies, and have them ready to go in a bug-out kit. My family isn’t as prepared as we might be, but we’ve got the basics. We don’t have the family size underground bunker, or 5 years worth of food and water that I’ve seen on the prepper reality shows, but I also believed we’d be okay in the event of a natural disaster. I never really believed our own government could be the risk for which we may need to prepare.

There’s no bug-out plan for a white nationalist coup. Soon, even our closest neighbors will be wary of allowing US citizens to visit their countries. In our desperation, we may become the illegal immigrants who come for a vacation, and then stay forever, seeking asylum from our lunatic, despotic leader. I hope we get a kinder welcome than we’ve historically shown refugees in this country.

I have this fear, and yet I still can’t keep my snarky mouth shut, and can’t help but troll the president on Twitter when he says something asinine, which is just about every day. So now I keep one eye on the front window, and hope I don’t see men in black roll up in front of my house. If I were smart, I’d just hole up with my family, keep stocking up on emergency supplies, keep the passports up to date, and make sure the car’s gas tank is always full. It’s a 7 hour drive to the Canadian border. I’ll bet we could do it in 5.

 

Groundhog Day

Even in my own head I sound like a broken record. It happens to be Groundhog Day, but every day lately feels like the movie; I wake up, see the headlines, read the reactions, and groan or sigh over whatever our Cheeto in Chief has done. That is, unless it’s a day like today, when I’m so stunned that I just sort of freeze, while attempting to process what I’m seeing or hearing.

Today happens to be the National Prayer Breakfast. Now, this is normally something I might notice, peripherally, but not really take an interest in, and can’t remember even hearing anything interesting about one of these in the last 8 years. Well, wouldn’t you just know that this event was trending at the top of all my feeds, due to the words and actions of our current president. Once again, he has taken what should have been a quiet, introspective event, and turned it into a narcissistic attention grab

While we’re all laughing at his idiocy, and mocking Trump for being a self-centered ass, I have to wonder what’s going on back at the White House, where I envision Steve Bannon cackling and wringing his hands over a boiling cauldron filled with children’s souls. Could it be that Trump is aware of how ridiculous he is, and uses that to engineer situations that will create a distracting buzz? Or, is it that he really is that obtuse, and only serving as a foil for the puppet-master Bannon? Either way, each day looks more bleak.

Just this morning, I learned that Trump threatened to send our army to Mexico, and hung up on Australia’s prime minister. In the meantime, I’m still reading about the people who are suffering as a result of the immigration ban, and have friends who are counseling one another to create alternate/clean versions of their social media accounts, in case they get stopped at a border crossing, and are asked to show those things to a customs official. Yeah, it’s that bad now.

Worst of all, each day I wonder if this will be the day that the ACA is repealed, and we have to scramble to get our daughter medical coverage. At age 22, she would no longer be covered on our employer’s plan, and since she has a pre-existing condition, would have to be on our state’s Medicaid program, which takes time to get going. I am grateful to live in a blue state, where we take seriously the care and well-being of our residents, but it still costs a lot of money, and without federal funding, that is a challenge.

So, the word of the day is gobsmacked. I’m glad that I can still be surprised, and haven’t yet begun to expect the worst each day. The way things are going, though, I expect it won’t be long before I wake up and assume that this could be the day we lose it all, both as a country, and as a family. I have a lot to lose, and not far to fall. Most of us are in this boat, but some of us can’t see it, and they’re the ones that will sink us.

What Fresh Hell

Each day since January 20th I’ve awoken in the morning, and wondered what our esteemed orange sociopath has been up to since I went to bed the night before. What a way to start the day. Each day I log into Twitter and Facebook, and start scrolling through to see what I missed. Each day there is something that actually makes me gasp, and my heart race, and my hope for the future shrivel a little bit more.

Today’s horror is that people who were already vetted for travel to the US, many with green cards, who had simply been traveling on business or to visit family, have been detained on entry into the US. There were literally people who were already in the air at the time that Trump signed the exclusion order. People who live and work in the US, and have family and children here. They had made the journey, landed at the destination airport, handed over their paperwork, and were then taken into detention and told they’d be returned to their country of origin.

What the actual fuck? I am literally sick to my stomach. This is not my America. This is not the country I was raised to believe was the great melting pot of democracy and welcome to the world. Where anyone, from anywhere, could make a life for themselves, and achieve their dreams. Every day since Jan. 20, Mr. Trump has worked to undo everything that’s been accomplished since the founding fathers created this republic.

Twitler and his puppet-masters say they’re so concerned about “radical Islamic terrorists,” and yet they don’t seem to realize that by their very actions, they are contributing to the potential radicalization of those people already in the country. They are alienating people who had believed they had a future here, an opportunity to better their lives, and the lives of their families. They had done all the right things, and suddenly have had the rug pulled out from under them. If they can’t trust our government to keep its word to them, then why should they keep their word to us? We are creating the very problem we wish to eradicate. It doesn’t even make good nonsense.

I’m not even going to get into the hypocrisy of not excluding people immigrating from countries in which The Donald has business interests. That’s a rant for another day. Today I’m more concerned with the humanitarian crisis to which we are now contributing, and the isolation, fear and anger that will radicalize the very people we should be attempting to protect. I used to think we were better than this. Now I can see that we are not, and it not only pisses me off, it makes me profoundly sad. This is not my America, and Trump is not my president.

#resist

Coping…Still

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Yarn Therapy

December 30, 2016. Twenty-one days before the inauguration of our new president. I thought that by now I’d have come to terms with the inevitability of a Trump presidency, but that doesn’t seem to be happening. Each day that passes, each new scary cabinet appointment, each new, inflammatory tweet, serves only to instill new fears. I simply cannot find a bright spot in any of this.

Yesterday I took my almost 22-year old daughter to the neurologist, who would love for her to consider having a device installed in her skull, which is hoped to reduce seizure activity by sensing the seizure almost before she does, and stop it before it starts. Awesome, right? Sure, maybe. But first there are extended hospital stays for EEG under video monitoring, opening her skull to do grid placement, so they know where to insert the wires for the device to be most effective, and then follow-up care, including someday needing to replace the power generator for the device. I don’t have to get the bill to know that this treatment is outside our price range. The VNS she already has cost $40,000, of which we paid about $3,000, and that was several years ago. I can only assume that the Neuro Pace is going to run about $60,000, plus all the lead-up testing, etc.

If Mr. Trump does what he promised to do during his campaign, our daughter will no longer be covered under my husband’s insurance plan, and she’ll be put on Medicare, which I very much doubt will want to pay for this surgery. My daughter wants to do it, hoping it will further reduce her seizure count, and finally allow her to be able to get a job, be more social, and change her life for the better. Or, it might not. It’s a very expensive gamble.

We were sent home from the neuro with an armload of information on the device, and we have a lot of homework to do, all while waiting to see what’s going to happen with our insurance coverage. I am not optimistic.

I was conversing with some other e-moms recently, people who mean the world to me, and all of whom totally understand this exact situation because they live it, too. We are all terrified. Not nervous. Not anxious. Not concerned. Terrified, like  shaking, sweaty, sleepless nights, terrified. Our children matter. Their lives have meaning. They are not disposable. We are literally sick to our stomachs with fear about what’s going to happen to our kids if Trump gets his way.

So, because we have these precious people who need us close by, we can’t be as active as we’d like to be in the Resistance. We can’t do the marches, or carry picket signs. We don’t have a lot of time for making phone calls or sending emails to politicians. We’re too busy calling doctors, pharmacies and insurance companies. We can barely marshal our thoughts long enough to carry on a conversation some days. We are surviving, doing what we can to keep our kids as healthy as possible.

We all have our own coping mechanisms, and sometimes those change regularly. We’re accustomed to change, sometimes at a moment’s notice, so our interests and hobbies change regularly, too. My current coping mechanism is crochet, which I learned again just last month. It keeps my hands busy, and keeps me off the computer for hours at a time, which is good for my soul. It might not be paradigm altering, but it can keep me from obsessing over things I can’t change for a little while.

Coping

It’s been two weeks since the election, and I’m still having a hard time coming to terms with a President Trump. It’s not sour grapes or poor sportsmanship. He’s not good for us, and we will regret allowing this to happen. Not to mention the fact that Hillary Clinton beat him in the popular vote by 2 million (that’s six 0’s, folks) votes.

I’ve not been on Facebook much at all. I’m monitoring my Messenger, and replying if tagged, but I’ve taken the app off my phone, and am trying to find more centering activities. Enter crochet. I taught myself to knit several years ago, but crochet has always eluded me. My grandmother taught me the basics when I was young, but it wasn’t something that stuck.

The best thing about learning something new is that it takes a lot of focus, and that means I don’t have time to wonder what’s happening on Facebook, and I don’t get sucked into negative conversations. I’m using Twitter and Instagram more, and I always read a lot. I have finally found that I am less stressed on a daily basis, and it’s easier to be in the moment in my life.

So, how are you coping with the biggest change in our government since the Revolutionary War?

If You Can’t Say Something Nice…

The above meme was shared by a Facebook friend today, shortly after posting a meme which compared which pins would keep you safe and which would not, insinuating that the wearing of safety pins will do nothing to keep folks safe, while military insignia would.

Honestly, I am just over it. I have friends who have closed down their Facebook accounts, keeping only the Messenger app, because it’s all just become too much. I am inches from doing the same thing myself. Facebook is my main outlet for socialization, but it has become more about preaching at people about how to believe, how to think, and how wrong they are about their own choices than about maintaining relationships. It’s exhausting, and not fun anymore.

I have a Google+ account that I never use, in addition to Twitter, and a very old LiveJournal, which I don’t think anybody uses anymore, but it may be time to find a new social outlet. I have too many ‘friends’ on Facebook who don’t really feel like friends to me, but they’re people I feel obligated to keep on my list. It’s kind of ridiculous when I see it in print. I’m over 50 years old, and worried about offending my Trump-voting neighbors. I think this may be the biggest problem with Democrats in general. We’re nice. We actually care about people, and want everyone to get along. This approach is clearly not working for us.

It may be time to get a lot more hard-ass, to stop caring so much what other people think, to assert myself more often, and let the chips fall where they may. Sadly, that’s really not me. I’m more the type to quietly state an opinion, back it up with facts, and then bail out of the conversation when it gets heated. I just can’t take the stress of conflict. Definitely PTSD from childhood fights in the house. Not arguments, fights. Loud, intimidating, and sometimes violent altercations. I became a peace-maker. Stubborn when I know I’m right, but rarely loud. I will sit and quietly mock people I think are ignorant in their beliefs, but feel uncomfortable with loud voices.

So, I’ll probably take a couple of days to think over the Facebook issue, silently resenting all the posts of people who are trying to shame others into believing the way they do, or are outright ugly to one another. I predict I’ll not be able to take much more of it, and will end up leaving for at least a while. In the meantime…

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