Archive for the ‘Sensory Processing Disorder’ Category


That moment when, even though you feel guilty for multiple reasons, you do something that changes your entire life.

I turned in my resignation. I did it. I did it with a letter. This time, my boss didn’t try to convince me to stay after our long discussion. This time, she understood. 15 months ago, she convinced me to stay, “just until the annual meeting,” and I promised that I would. I guaranteed her those three months, and then, “we’d talk again.”

This time, when I turned in my resignation, she had already announced her own retirement.

I have five days left, including today, and I promised I would finish up my notes for my files. I hope that I can. I promised I’d stay an extra day or two if I couldn’t finish up by my last day. I’m a sucker. I really am. I don’t know why I didn’t just keep up with my notes as I went along.

Yes I do, that’s a lie. It’s because there’s been so much work piled up with my consumers and at some point, it was the paperwork that took the hit. Now I’m paying for it. It’s okay, I’m not taking new people on. I’m wrapping up and passing my people on to coworkers because that’s the way it goes here.

So today, there’s a Board Meeting. It’s a mostly-new board with a brand new Board Chairman and he’s pretty awesome. He’s got a lot of energy and brings a lot to the table. I forget how it came about, but at the annual meeting he ended up offering to buy me a cup of iced coffee as an apology for something, and I forgot today was the board meeting so he chastised me for not e-mailing him with my favored coffee flavor. I told him, then hedged, and told him that Friday is my last day because he offered to bring the coffee next week. He seemed genuinely bothered, so I explained about my health and current family concerns, but how much I love the agency and the people I work with. He asked if there was anything the board could do to keep me here and stated that if I change my mind after a period of time I’d be welcome back any time. I told him that meant a lot to me and I’d keep it in mind.

That was kind of awesome.

Now I only have to worry about getting my SSDI application completed, and waiting three months or so for them to respond with an approval. But I have to actually stop working first. I’m nervous. I’m really nervous. This whole thing is a huge life decision. It changes my life, my husband’s life, and that of my children. I realize that it also affects the work place that I’m leaving.

I have to be selfish this one time. I have to listen to my body and my family. I can even take this as a chance to talk to my daughters about how this choice still fits in with being a feminist.

It’s time to do this. The rest of my life is about to begin.

 

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Dear Kathy Griffin,

I hope today finds you, well, I hope it finds you well. I’m assuming that today, likely now to be known as Two Days After That Execution Video & Photo Shoot, you’re having some internal dialogue as you and your publicist continue with damage control. I’m not going to assume too much about your state of mind prior to that stunt; I’m not going to assume too much about your current state of mind either.  

I’m not interested in being part of your character assassination. I’m not going to flame you or try to hurt your feelings. My intent here is to try to bring you back down to Earth where the little people are. I’ve peripherally noticed your career, since I’m not a fan of your brand of comedy.  I do appreciate your activism and find your serious acting roles interesting.

So when Wednesday I only peripherally noticed your name in one or two vague Facebook statuses late in the evening, I assumed that you had simply pushed a sensitive political button for Republicans. I went to bed blissfully unaware. I had a nice balance of polite dislike-sometimes-like and respect.

Thursday morning (yesterday), the morning news and radio were kind enough to share all of the gory details of the “Execution Video” showing you holding the decapitated head of Donald Trump. They shared your interview about the video you made with Tyler Shields behind the camera. I saw the video with the blurred out “head.” Thanks to the internet, later on, I saw the more graphic images ie. no blurring. It drove the point home that the intended “joke” and the edginess, provocativeness of the juxtaposition between yourself and Trump and an ISIS terrorist and a hostage. They talked about your apologies, and mentioned how they’re not being accepted by organizations such a the VFW. They talked about CNN canceling your future job engagements with them.

It took a me a whole day to process what I had seen and heard. I’m appalled and disappointed. I’m sure you wish you had thought things through and considered that the only approving audience might actually be ISIS. I’m writing this because I’m not entirely sure that you understand why your apologies haven’t been accepted, and why many people won’t forgive you for a long time, if ever. Just think about the Dixie Chicks.

You’ve owned that what happened was wrong, yes. You say that you know it was wrong and won’t do it again. The tricky part here is that people aren’t convinced that you know why it wrong. I don’t think people are convinced that you know why people of all political persuasions and regardless of their opinions on Mr. Trump are as equally appalled. 

We’re already in a very precarious political situation. I know that I’m not saying anything new. It’s not a secret or anything even profound. It’s well known as a fact that it’s been a nonstop fiasco since this dumpster fire of a president announced his intent to campaign. I share the embarrassment over the fact that this man is sitting in the Oval Office. I share in the feeling of moral disgust and automatically-triggered rage and anxiety by simply looking at that man’s face.

We all want to have the balance of power restored. We all want to feel empowered in our lives, and to help others find that which makes them feel empowered.

This video didn’t come from a place of power or empowerment, and it doesn’t evoke those feelings in most Americans. There’s a shared shock, mortification, disgust, and genuine outrage across all party lines, and it’s one of the few things uniting those who support Trump and those who vehemently oppose him .

It doesn’t matter that he’s the most hated president in our history; that he’s made history by having the lowest approval ratings not only in his first 100 days, but of any president; He may be the biggest embarrassment in the international stage of leaders; He may be the most corrupt not-politician that ever politicked and the most corrupt individual to ever sit in that chair in the Oval Office; but none of that matters.

The problem is that what you decapitated wasn’t really Donald Trump. You didn’t figuratively cut off the head of the snake and speak out against his policies, ethics, morals, authority, or even his goings on in his personal life. Take Trump out of it. The decapitated head you held was not viewed as a symbol of removing Trump and his power and control. Those of us who are appalled could look at that head and blur out the features, and in our minds imagine any President in its face. We can imagine every President, past and future, in its place.

Because it’s not the current president whose head you decapitated.

It was the very notion of The President of the United States that you decapitated. You decapitated the very rich, full history, the respect, and honor of the Office of the President, and every other office. You decapitated the American People in a manner that was visually and morally repugnant; in a manner that was hateful, chilling, threatening, and violent. You decapitated the privilege, power, influence, giving the incredible potential and opportunity to do GOOD in that office, which is our right as The People under the Constitution.

We have problems in our nation, no doubt. That’s not news. Our country shares many of the same social issues and political issues as other countries. There’s corruption, racism, classism, ableism, and every anti-something you can think of. We have people that are anarchists and hate the government and authority. We have things to be embarrassed about and to apologize over.

But we are also a nation of advocates, allies, lobbyists, writers, artists, journalists, actors, parents, self-advocates, people that care and can make noise when our elected officials do and say things we dislike. We can speak out with our votes; writing letters; attending peaceful, non-violent protests; making phone calls; and anything else that’s protected by the Constitution regarding free speech. We want our messages to come from a true place of power, empowerment, peace, dedication, passion, advocacy, activism, patriotism, and non-violence as is our Constitutional right. This is what we take pride in, and what retains and maintains our Freedoms and our Civil Rights.

This is what Americans do.. we advocate, not decapitate.

I know it’s unlikely that you’ll stumble upon this entry, but if you do read it Ms. Griffin, I hope you read it with an open mind.

Sincerely,

Jessica

 

After The Press  Conference

EDITED TO ADD because I listened to that disaster of a news conference:

Back up the truck.

Kathy Griffin, you made a horrible mistake holding this press conference today. Justifying your actions and going on the attack and listing all of the horrible, disgusting things Trump has said and done as your excuse simply proves that you don’t understand why what you did was wrong. I’m no fan of Trump. I’m no supporter of the suppression of women’s rights. That doesn’t mean I can’t be appalled at that press conference.

It’s not appropriate to tell people to stop being angry because your feelings are hurt that no one “got” your joke and no one appreciated the art.

It’s not appropriate to accuse people of trying to suppress your right to free speech or violate your 1st Amendment Rights. You took offensive photos, and people are reacting. The nation is reacting. You say you don’t have a network behind you, you’re losing jobs. That’s not silencing you. It’s a business decision for them. It’s a consequence for you. People, men and women, have been fired for far, far less than what you did.

You have the right to free speech as long as it’s not hate speech; incites violence; can be considered a death threat or threat of violence upon someone else especially the president. You forget that people have a right to react to your free speech and what you believe is art.

I’m disappointed that you turned this into an equal rights issue for women. It would have been just as horrifying coming from a male comedian. It would have been considered just as inappropriate. This is what rich old white men say when they accuse us of “playing the woman card.” Turning on the tears and pointing out how you’re such a small frail woman doesn’t do any favors for you or for women. Your behavior in that news conference perpetuated every negative female stereotype, and as much as you want to claim Girl Power and pretend that this is about you being a woman, and there are some big bad good ole’ boy men silencing you poor little tiny female, you stomped feminism under your precious little feet.

There’s this thing where you tell a joke, and people laugh, and you know it’s funny. There’s this other thing where you tell a joke and no one laughs and you know it’s not funny. Then there’s this final thing when you tell what you think is a joke and literally everyone is angry and appropriately outraged, and you have to accept that maybe the problem isn’t everyone else.

Chastising others wasn’t the way to go. Humility was. Laying low and refraining from having a press conference where you said all of these things that you should have kept to yourself until you gained more perspective was the way to go.

You’ve only made it worse.

People don’t tolerate sorry-not-sorry nonpologies.

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Last week I had a neurology check up. I love this guy. He took it very seriously that I had a migraine that was on its ninth day, and showed no sign of alleviating. I’d been taking my daily med religiously; I’d been taking the Imitrex when it got out of control. I’d even been taking Advil on occasion in order to make it through work. I told him that I’d missed two days of work in spite of it all, and wasn’t sleeping even on the weekend.

He prescribed Prednisone, which he said would likely leave me feeling wired like after having way too much caffeine. He said not to take the Imitrex with it, because the efficacy of the Imitrex would be non-existent while on the steroid. I should feel better after the 2nd or 3rd day, taking 5 tablets the first 3 days in the morning; then 4 tabs; then 3; and so on.

I started the Prednisone on Wednesday of last week. I’m feeling “better” but the weather we’ve had hasn’t entirely helped. I’ve had restless sleep thanks to pain, which of course hasn’t helped. Over the weekend any rest I attempted was interrupted by the girls, the Mister, or Leo calling for his Mama. That dog likes to wake everyone up by 7:30 am. If I’m not downstairs by 8:30 am on a weekend he calls me specifically, with this whiny barking that gets urgent, so I end up having to go downstairs to let him hug me. Yup, he’s a hugger. I had to train him to be a polite gentleman dog and hug “properly” so that he wouldn’t knock me down. Goober.

I think that if I can get some long, uninterrupted sleep while on the Prednisone, it’ll work much better. The cats like to take care of me when I’m in bed, so they won’t be a problem. It’s the rest of the clan. 🙂

I went to work today, and I’ll be honest, I should have stayed in bed after the kids got on their rides to school. The Prednisone isn’t wiring me up, it’s making me sleepy. Neat trick.

What worries me at the moment is that if that damned Trumpcare bill passes? Migraines aren’t covered. I could be denied healthcare coverage simply for my migraines. Forget everything else I have to cope with. Migraines can keep me from any sort of healthcare insurance because the bill, if passed into legislation, will allow insurance companies to deny me coverage as a pre-existing condition. That means out of pocket if I see my neurology; if I have to go the emergency room for debilitating migraines that only the hospital can handle; for any of my migraine control medications. That’s thousands upon thousands of dollars a year. If they deem me suitable to cover at all, migraines alone could raise my premium thousands upon thousands of dollars a year.

Just the migraines.

I’m not talking about a little pain in the head. I’m not talking about a headache that some rest and avoiding sex for a night will take care of.

I’m talking about truly debilitating problems that are neurological in nature. Migraines are painful in the eyes, behind the eyes, in the top of the head, behind the head. They cause vision problems. There are sparkles, floaters, auras in front of the eyes. There’s tunnel vision. There’s blackout vision, where nothing is visible at all. There’s vertigo. There are auditory problems, sometimes a blocking of the ears and sometimes hypersensitivity. There can be auditory, visual, tactile, and olfactory hallucinations. Any combination of these symptoms can cause nausea, and vomiting. Fever can occur during migraines. Difficulty and slurring of speech can occur. Inability to walk and stand upright, or even to sit. Light sensitivity. Skin sensitivity.

There is a complete lack of function. It’s debilitating. Literally debilitating. The worst of a migraine is like having a seizure and stroke at the same time. It takes a lot out of you physically and emotionally. You want to scream, cry, beg, plead, but you can’t even think straight let alone speak. You’re forced to ride it out.

Luckily, most of the time mine have been under control by taking Topomax daily. I take the Imitrex for breakthrough migraines that need to be put under control when Advil doesn’t work. After a week, more than that, when that didn’t work, I finally needed to figure out what to do with my doctor. And if this doesn’t help, I don’t know what the next step is. But we’ll get there.

I’ll only get there if the current law, the AHCA, remains in place.

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I have good news! Are you interested?

I went to my pain management and spine specialist last Wednesday after work. During the appointment we went over the X-Ray results for my hips and lumbar spine due to the exacerbated pain I’ve had since the fall my beastly dog caused on a walk. There was a concern that my hip fractured or broke.

I’ve mentioned before that my lumbar spine already has bulging discs. The X-ray was for just the lumbar and hips, and since my MRI during the summer, that’s deteriorated, likely due to the fall.

Neither of my hips, which have arthritis, are broken or fractured. That’s the excellent news. The arthritis, however, has also deteriorated and has done so more significantly in my left hip. That’s likely due to the fall.

I’m relieved that there aren’t any fractures. That means that we can take “putting a pin in it”off the table. That’s a huge relief. I guess now I’m wondering what my treatment options are, because I met with the APRN instead of the doctor. When I have pain that, in the moment, is at least a 10 what do I do? I can’t support my body when I’m standing up because the pain is so severe. I feel as if my skeleton is being ripped apart and shattered with a hammer. It’s scary, and it takes my breath away.

Since I’m 42 and never had a bone density test, I’ve requested one to be ordered. I know that it’s been an issue in my family, and with the arthritis, maybe it can help with therapy. I’m already doing aqua-therapy but anything at all that might help relieve this pain and I’m in. The APRN didn’t indicate that the degeneration is severe enough for surgery to repair the arthritis, so I’m guessing that’s not an option right now. And honestly I think that has to be a last resort.

It’s funny, though… my PT for aquatherapy seems to think that surgery with additional PT is preferable to additional medications. She has Fibromyalgia, too, so I’m assuming that she’s aware that every time someone like us has a surgery it further suppresses our immune system because the body has to fight so much harder than is typical to heal, and to fight off even simple infections and illnesses. We also have to cope with having all of the medications administered during a surgery coursing through us for months which affects the medications we’re already on. Anesthetics stay in the body for up to two years, especially when it’s administered in large doses.

I would rather exhaust all other options before considering surgery. Just like before I agreed to try pain medications, I exhausted every other possibility first. And sure… I kicked myself and wondered why I didn’t go to the pain management specialist years sooner when my PCP first suggested it, but this isn’t the same thing. I have a hard enough time healing from paper cuts. 😉

I know, I’m putting the cart before the horse. It was just a conversation I had with my PT on Friday. I’m just trying to work it out in my head a bit. And maybe the APRN didn’t let on how bad it really is. She’s been known to do that.

Oi. I need chocolate. Good chocolate. Better yet, I want someone to give me good chocolate.

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I woke up with a feeling this morning, attached to a phrase:

Purple Rose Inside Dew Drop; found on Google images, no original credit was found

Purple Rose Inside Dew Drop; found on Google images, no original credit was found

A single dew drop can affect the entire blossom. Such is the effect of Fibromyalgia.

I wish I could remember where I first read that; all I remember is that when I did, I cried. I’ve never forgotten it. For some reason it’s been on my  mind today. I wish I could give that quote proper credit.

While thinking about that single dew drop, it made me think of this poem by Issa, also known as Kobayashi Issa, a Japanese poet known for some beautiful Haiku.

 

 

 

 

 

A world of dew,
and within every dewdrop
a world of struggle
Issa 

 

In the cherry blossom’s shade
there’s no such thing
as a stranger.
Issa

 

I found this one below on a site called HaikuGuy.com where he’s compiled 10,000 out of 21,000 of Issa’s poems. This one makes me think of Leo, my dog:

1806

.草の露先うれしさよ涼しさよ
kusa no tsuyu mazu ureshisa yo suzushisa yo

dewdrops on the grass
at first so happy!
so cool!
Issa

Since I’m sharing quotes I enjoy here’s another one:

“Where flowers bloom so does hope.”
–  Lady Bird Johnson

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I really need to write an entry about managing my spoons per day, because at the moment I’m having trouble leaving myself enough to even get through until 4:00 p.m. during the school week.

I know that I need to recenter myself, refocus, and remember to simplify. I need to use the tools at my disposal.

I need to remind myself of how to do those things and what those tools are.

Before I can even write that blog… I need to take a big breath. In through the nose to the count of five, with the eyes closed. Pause. Out through the mouth until all of the air is gone. Pause. Breathe in through the nose to the count of five. Pause. Breathe out through the mouth until all of the air is gone. When you do this breathing exercise, think of nothing except the breathing. Focus and direct all efforts on your breathing. Do this five times without rushing the process. Keep your eyes closed, and don’t allow outside distractions, such as children or spouses but most especially your phone to interrupt.

This exercise takes as long as it takes. Do it twice if you need, but this exercise will force your brain, body, and anxiety to relax. Bringing in oxygen and forcing out thoughts does wonders.

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You know what I just realized? I write a lot about disability and advocating for disabled individuals. I write a lot about acceptance in disability, whether you’re a parent, friend, coworker, or even someone who has never met someone with a disability (that you know of); and yet I’m not sure that I’ve ever explained in the simplest of terms what a disability is.

I just get so fired up.

Disability is a physical, neurological, or mental condition that limits a person’s movements, senses, or activities. It may cause impairments, infirmities, and disadvantages, to performing activities in society due to the barriers that exist.

What I try to address is this:

Barriers exist not because someone is disabled, but because society as a whole hasn’t figured out how to:

  • Fully accept disabilities as normal and nothing to be ashamed about
  • Fully accommodate all disabilities and invest in the people who have them
  • Incorporate Universal Design so that ALL PEOPLE may participate in ALL ACTIVITIES equally

And those things are important because people who have disabilities are PEOPLE. People who are deserving of being treated with dignity, respect, grace, and equality to be viewed as valued members of society that contribute as equally as anyone else can.

This is a lesson that you’ll learn well when you become disabled through an accident, illness, or age if you’re not presently disabled. 🙂

 

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