Archive for the ‘Sensory Processing Disorder’ Category


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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Are you a Cat Person or a Dog Person?

I get all sorts of answers with this question offline, and usually stories to go with it. Hence the poll! I’d love to see your stories along with your answers.

There doesn’t seem to be a true middle ground anywhere for a lot of people. Most people care about their answers, and people who care about the answer are SO! EMPHATIC! AND! PASSIONATE! That’s great, I love passionate. I’m passionate about my animal companions. I love them, so I should be passionate about them and I like to see that same emotion in others.

My answer is complicated. I’ve had hamsters 🐹, and I like hamsters but they’re fragile. I’ve had fish 🐟🐠🐡, but fish don’t cuddle and I always end up killing them in spite of my best efforts.

I’ve always loved cats and took the plunge nine years ago. As a child, I was somewhat allergic but my dad was Seriously Allergic. No cats in the house. I still knew I needed cats in my life. I’m most emphatically a Cat Person. I’ve always taken pride in being a Cat Person. I’ll have cats for the rest of my life. I need them. 🐱

Now that our family has a dog, and I was a willing participant in adding Leo to the family, my answer to “are you a cat person or dog person” is more complicated. I thought that having a dog would teach me that;🐶

  1. I was also a Dog Person
  2. I’d learn some innate truths about dogs that would help ease my anxiety about Other People’s Dogs
  3.  I’d learn to love all dogs equally
  4. Training would get easier as time went by

So far, nope, nope, nope, and nope.

I’m not a Dog Person. I don’t love every dog. That’s what would make me a Dog Person. I haven’t learned any innate truth about dogs except that they can assholes just as much as any cat can, except it’s kind of funny when cats are assholes. I will always have anxiety about Other People’s Dogs. I love MY dog, and dogs that I’m relatively close to who are well behaved. 😉 Training is going well, but it’s often slow going and it’s not getting easier. I know he’s essentially a toddler verging on adolescent, and he’s teething, but holy HELL that boy ate the Bible this morning. And he did it because I didn’t give him the attention he wanted when he wanted it because I needed coffee that I never did get to make.

No, as a matter of fact, Leo has NOT learned the benefits of coffee ☕ yet. He knows it smells delicious and he always tries to steal it from me, but he doesn’t understand that my coffee saves his little life every morning. He’s willful with a huge personality and a ton of intelligence, but he hasn’t figured out the coffee thing. The cats figured that out right away, almost as quickly as my children did.

I’m a Cat Person who loves her own dog. There’s no doubt I love him. He’s silly, bright, energetic, happy, healthy, but he’s becoming a teenager at 12 1/2 weeks old.

Now, I enjoy silly puppy videos as much as the next person. I enjoy seeing friends and family share their photos and stories of their dogs. I enjoy learning about my dog’s breed, and a couple of other breeds I’m interested in. I’m developing an interest in learning about the history of dog ownership and training in America. But I’m not at a point yet where I can say that I’m a Dog Person.

My cats are definitely not Dog Cats, but they’re handling him a bit better now. It’s the barking that gets to them. They like to watch him and they’re learning everything they can about him. They’re just waiting for him to grow large enough so that he can’t fit through the dog gate that has a cat door in the bottom.

Here’s the maniac… errr… Leo.

Who did this moments earlier…

Which okay, fine, it’s NAS but still. It’s a Bible. 😋

 

 

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I don’t get paid to write this blog. I’m not good enough. So take me at my word when I say, as a very hyper-critical caramel-in-coffee-but-I-love-it coffee drinker that this is THEBEST salted caramel… nay, caramel creamer for your coffee. 

I say this, admittedly, as someone who already enjoys Natural Bliss. It’s the only one besides pure organic cream that I can drink in my coffee without contributing to pain issues and migraines.

I was skeptical about the flavor before buying because so many caramel creamers leave a weird aftertaste. No worries. I’m not buying any other caramel creamer brands now.
COFFEE-MATE Natural Bliss Salted Caramel Creamer 

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