pain · seizures

Hip Hip Hooray.

Today I trekked all the way across town and back to see the doctor and get an x-ray so he could send me an email and tell me there’s nothing wrong with my hip. I must be imagining this excruciating pain, I guess. If I could move my leg that far, I’d be tempted to kick something.  Wait, I already did that! Yeah, seems as if everytime I walk the last two days, I manage to jam my poor toes into something hard, including a couple of doorframes,   a metal trunk, the freezer, and more than once, Brandon’s steel-toed boots! My toes hurt almost as badly as my hip.

The hip has been giving me trouble on and off for the last year– I sleep on my left side, and apparently, that hip is tired of being at the bottom of the heap. Every few days I’d wake up in the night with it aching, roll over onto the other side, or my back, and things would mostly be okay. Then, on Monday night, I had a seizure sometime during the night, and that just aggravated everything. All day Tuesday I was in major pain– and not just the usual after a brain party kind of pain! Sure, I had a headache, I’d bitten my tongue, and the muscles in my calves are stretched to the breaking point. But this pain in my hip is something new–something bigger. I spent most of the day in tears, in med, with beneath ice packs. Big fun. And, of course, now Dr Jeff has said the x-ray shows nothing wrong. ARRRRRGGGHHH!!!!!

Oh well. On with my life, I guess.

Family · moving · random stuff · seizures

It’s My Life…

My life is not really busy enough to warrant my being such an absentee blogger. I am the Queen of Procrastination, and that does justify it, I guess… Anyway, here I am, with an update.

As most of you know, I share a house with my extended family – my elderly parents, my younger sister and her two children, ages 13 & 23,  2 dogs & a cat. We rent this large house, and have for a few years, and mostly it works. Or it did. Things aren’t working so well anymore. My father has dementia, which is getting progressively worse, and he refuses to see a doctor. He’s gone from being a friendly, funny, loving man, to an angry, hateful unhappy stranger. He’s mad all the time, at everything, especially at the dog, and at me, for some reason. In all of my childhood, I have only one memory of my father yelling at me, and that was when I was about 4-years-old, and ran into the street after a ball. These days he yells at me all the time. I try to remind myself that it isn’t him, it’s the disease, but some days that’s difficult to remember. In January Mom fell at church and broke her hip. She spent two months in the rehab center, and had a mini-stroke while she was there. She’s recovering well, but not as fast as she’d like. Not being able to do all the things she’s accustomed to doing is frustrating to all of us. The biggest issue right now is money (isn’t it always?). While the folks wait for the settlement from the insurance company, bills are falling behind, and we’re all worried. Our landlord has informed us that in September our rent will be raised, so we are going to need to move. Mom has been looking at assisted living facilities, but the prices are insane. I’ve no idea where there rest of us are going to go. I have my disability income, but that’s not really enough to pay rent anywhere except a nice cardboard box.

As I type this, I’m becoming very discouraged. I keep telling my mother not to worry about me, but really, I have no idea what I’m going to do. There is no such thing as affordable housing, especially for someone in my situation. I need to be able to move in the next couple of months, and I don’t see that happening. It’s not as though I need something fancy–all I need is one bedroom, a bathroom, and a small kitchen, somewhere within walking distance of the bus line. I need internet access and decent water pressure, and a closet. Keep dreaming, Jonna.

So what else is going on? Umm…I went six months without a seizure, and then, boy did I have a doozy. Big time. I did change doctors–I am no longer seeing the folks up at OHSU for my neurological needs. I got tired of seeing a different doc every appointment, and that last doctor was just plain rude, so I have switched everything over to Providence. My new doctor is very nice, and seems on the ball.

I had blue hair for a month this summer. That was a mistake…But the blue was better that it’s aftermath! In trying to remove the blue, I damaged my hair so much I’ve had to cut it short, which isn’t the problem, not really. The cut is a bit odd, and needs some help, but the color at the moment, oh. my. gawd. My hair is this awful shade of ashy golden blonde, which just looks nasty on someone with my skint one. Looks as if I have scurvy! Blech. Fortunately, I know how to fix it, and will be doing so VERY soon. As soon as my sister arrives with my supplies, as a matter of fact! And then, I’ll be a beautiful brunette once again…pictures will follow!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Bones · books · Dexter · epilepsy · Harry Potter · migraine · seizures · Sherlock Holmes · True Blood

Blah Blah Blah

It’s been a painful week for me. Since last Monday afternoon, I’ve had neck pain, sore shoulders, and increasing headache pain. From the basic dull ache at the base of my skull (which always comes with that sore neck), to a series of intense stabbing pains. This afternoon I felt as if someone was repeatedly piercing my temple with a red-hot ice pick. I’ve spent hours days curled up under my quilt in bed, all the lights off, praying for the pain to go away. Never have I been so thankful for my sleep mask and ear plugs, because lights, and the sound of sports from my father’s television, have nearly killed me. And then, Sunday night, around 10:30, I had a seizure. First one since February. Which means that after that, I had a bigger headache, my tongue hurts where I bit it, and I’m tired. As well, I am sore all over; my legs hurt the most, and just moving kills.

keep-rambling-nonsense-and-drive-everyone-bananas-640x640

So. Instead of spending this week helping Charlie move into his new apartment, like I had planned, I’m sitting here in my room, watching television, eating jello. Reading. Right now I’m waiting for the season premiere of one of my favorite shows to begin on TNT. Rizzoli & Isles is a crime drama based on a book series, as most of my favorites are. I’d read all of the books by Tess Gerritsen, long before the show began.

Most of my favorite shows are based on books. Sherlock. True Blood. Dexter. Bones (although I don’t care for the books).  My favorite movies, too. Cold Comfort Farm. The Color Purple.  Bridget Jones Diary. The Harry Potter films. Sense and Sensibility. And Pride and Prejudice. Oh, and To Kill A Mockingbird!

Yes, I’m babbling. So what. Go read a book if you don’t like it. Or watch a television show based on one.

Alice in Wonderland Syndrome · crazy · Crystal Light · epilepsy · fat · food · headaches · Internet · medication · migraine · neurology · pain · seizures · stress · triggers

There’s A Word for That?

Migraineur:

mi·grain·eur

mēgrəˈnər,ˌmīgrā-/
noun
 someone who suffers from migraine headaches.
Earlier this week, I was doing some research online, trying to see if there was a connection between the two glasses of pseudo-Crystal Light I’d been having now that the weather is warming up and the massive migraines I’d been having, when I learned some nifty things. Such as the word migraineur. Makes sense that there’s a word for people like me, but it had never occurred to me.
Reading about triggers was rather enlightening as well. I wasn’t all that surprised to learn that artificial sweeteners are a big migraine trigger, since they cause all sorts of problems. I try to avoid them, preferring natural sugar, really I do. But for some reason, every summer, I go through this diet drink frenzy where I consume Crystal Light, or the fake store brand equivalent, in all it’s many flavors. No more of that for me. I’d rather be fat than in pain. Sugar is a trigger for many people, but I have to consume a huge amount before it gives me a headache; same with caffeine. Alcohol, on the other hand, give me pain within an hour or two of my first cocktail. No big deal, since I’ve never been a big drinker. Some of the other common food triggers are chocolate, cheese (hard or fermented), processed meats, and gluten. To the best of my knowledge, none of these are triggers for me. Good thing, too, because I don’t want to give up chocolate. Life is hard enough. Other triggers include weather changes, bright lights or loud noises, perfumes, lack of sleep, stress, missing meals, dehydration, hormonal changes, and crying. Yep, one reason I avoid the cosmetics counter at department stores. Those perfume samples are killers. Same as the laundry detergent aisle in the grocery store. First I sneeze, then I get a headache. No fun.
Migraine Triggers infographic
Here’s what really came as a surprise to me, however. In an article called ‘What’s Your Strangest Migraine Symptom?’ I learned that several things that have been happening to me for years are likely migraine-related. And here, I thought I was just crazy. Or had a brain tumor.
One of these symptoms, Alice in Wonderland Syndrome, is a disorder that causes a person to believe that body parts (and in some cases their environment), are changing shape or size. For me, it usually means that I feel as if one hand is growing larger and larger, as if it’s a huge clown glove, filled with air. It never lasted very long, but felt as if it did. Once, when a migraine was so bad I had to go to the ER for treatment, this happened after they gave me the fun shot; that time, I felt as if my ears were getting bigger and bigger.
The first time I remember this happening I was eleven-years-old. I had been reading in the afternoon during summer break, and suddenly, my right thumb began to grow. It didn’t last long, or get very big, and I don’t remember if a headache followed it, but I do remember being totally freaked out. Until recently, I never told anyone about it.
When I was in junior high, I read Stephen King’s ‘The Dead Zone’ for the first time, and one thing from that book has stuck with me ever since. The neurologist asks Johnny if he ever smells anything unusual, like rotting oranges, or feces, when there is nothing there; apparently this  a sign of a brain tumor. Well, it turns out these types of sensory hallucinations are also a migraine symptom, one I’ve had often. I was pretty sure I didn’t have a brain tumor, because I’ve had my fair share of MRI’s & CT scans, thanks to the epilepsy, but thanks to Mr. King, I was always scared. Now, I don’t need to.
I do wish that one of the neurologists I’ve seen over the years had pointed some of this stuff out. I’m especially cheesed that the migraine specialist I’ve been seeing for the last year never mentioned any of this. I appreciate that there are all these online communities, but shouldn’t a doctor have said something?!
I’m sure there’s a word for how I feel.
migraine-art
book reviews · Drarry · epilepsy · fanfiction · Harry Potter · Internet · seizures · slash

A Few Reccomendations

I promised some fanfiction recommendations, and here they are. I’ve read so many, but these are just a few that I truly liked. I’ll add more later. All of these are in the Harry Potter universe, and are mostly Drarry stories. I confess, I do like those slash stories!

DracoHarrySlashDemot

 

Jonna’s HP FanFic Recs, Part One

 

The Bound Prince series by slash perv and sayingsorry_hh                                       (7 volumes, Harry/Draco, ADULT)

This seven volume series is extremely well written, and is available on slash perv’s website as a free pdf download. Beginning with that pivotal moment in Harry Potter and The Half-Blood Prince where Harry finds Draco crying in the bathroom; in this version, instead of hexing each other, they kiss, and from there, things escalate. Serious m/m slash, with lots of explicit sex: really, in nearly every chapter after the first couple, Harry & Draco are shagging, sometimes on a life-or-death basis. Some of the best long reads out there.

 

A British Summer by Omi_Ohmy                                                                                (One Shot, Harry/Draco, Explicit, Smut)

Ice cream.  After the war, and a very public breakup with Ginny, Harry has become a recluse. Draco is surprised when he runs into him scooping ice cream in a Muggle town on a summer afternoon.  I love ice cream (and sorbet, and gelato, and frozen yogurt…) and this story called out to me. It is yummy–but be warned, it’ll have you craving a frozen treat!

 

Vale Sanare by RurouniHime                                                                             (Draco/Harry, one shot, angst)

This is not a happy little fic, but it speaks to me.  Draco suffers seizures as an after-effect of something that happened during the war (we never find out what), and Harry helps him to find ways to cope. Turns out the war left Harry with some physical issues of his own. I am epileptic, and I seldom read anything that talks about seizures, simply because most writers cannot get the way seizure disorders affect a person right. This author does a spot-on job of describing both Draco’s seizures themselves (from his POV), and the way he feels after; I especially like the way the author describes his aura:

“Everything is the colour of plums, so dark and so opaque that Draco doesn’t know what happens next. He could be falling. He could be standing. He could be breaking his nose on the floor right this instant, this eternity, and bleeding over Harry’s floorboards—”

 

Not Only Fine Feathersby fantasyfruitbat                                                                 (Harry/Draco NC-17, one-shot, veela!)

I confess to a liking for veela fics, and this is a bit different from most. After the war, a mistreated, caged and feral veela is discovered in a Death Eater safe house, and will only respond to Harry. Of course, this veela turns out to Draco. The Ministry wants to put him down, but Harry fights to save him.

 

Checkmate by Naadi       HP_Slash___Checkmate                                                                                    (Harry/Draco, romance/angst)

Set during their seventh year at Hogwarts, this is a multi-chapter fiction that is canon through Goblet of Fire. Draco challenges Harry to a game of dare chess, and throughout the fiction, an actual game of chess is played. But is his ultimate goal love or betrayal?

This is a very popular fic, and even won some awards. The fan art for it is numerous, and includes a Lego version of one chapter, linked here.

 

Sex, Lies and Veritaserum  by lettered                                                            (Harry/Draco, one-shot, explicit)

The warning on this story states “This entire fic is one long conversation about sex.” And it’s the truth. When Draco spikes the wine with veritaserum, he and his husband Harry begin a conversation about their sexual fantasies and desires. This gets rather explicit, and hot. Hey, they aren’t all love stories, folks.

 

And An Owl Named Romeo by Rickey                                                                   (Draco/Harry, romance)

Draco breeds owls, Harry is an Auror, and an owl brings them together. The characterization in this love story is wonderful, and so is the romance!

 

Nothing Like The Sun by Lomonaaeren                                                            (Harry/Draco, angst/romance, NC-17)

Don’t go into this one expecting happy happy joy joy. In this story, Harry has been convinced by his past lovers that not only is he too ugly and lousy at sex to keep a wizard lover. He tries to get better, and compromises by wearing glamours, and finally, deciding to be content with one-night-stands with Muggles. Then along comes Draco, who messes everything up by wanting a relationship. This was a difficult story to read–Harry’s pain is palpable. But stick with it. It’s worth it.

 

It’s My Life by Fyreheart                                                                                                   (Harry, AU)

This is an alternate universe fiction, and one of the best I’ve read. After his second year at Hogwarts, Harry realizes that things aren’t quite what they should be, and he decides to change them. He does this by becoming pro-active in his life, and making huge changes–including leaving Hogwarts, and England. It’s an interesting idea, exploring “what if?”

Michele · seizures

Selfish to the End

Sometimes watching a television show, or reading a certain book will start me on a train of thought I never imagined taking. I’ve spent the last few weeks watching the HBO series ‘Six Feet Under‘ and it has me thinking about death. Big surprise that a series revolving around a funeral home would take me there, huh?

I’m not having dark, goth thoughts, or seeing dead people like some Haley Joel Osmet wannabe. I’m not wondering about what it feels like to be dead, although I used to, once upon a time. Occasionally, the show has sparked a severe pang of regret, a wallop of a reminder of how much I miss those I’ve lost, and how much it still hurts. Mostly, what it has made me think about is planning. We never really know what is going to happen in life, and there are things that should be on paper.

For years I had what is known in Oregon and Washington as a ‘Advance Directive’ filled out, stating what I wanted done in case of a medical emergency, and who I wanted to make those decisions for me. My sister was my designated person, since she knew my wishes, and can keep a calm head. After Steven and I got engaged, I changed that paperwork, naming him. He was irate to read that I had a DNR order in case or a severe trauma. The idea of being kept alive by machines is totally appalling to me, simply abhorrent. I know now that if something had happened to me while his name was on that paperwork, he’d have been fine with keeping me all Sunny Von Bulowed, if only so he could play the martyr.  Needless to say, his name is no longer on my papers.

I realize it is a bit grim to be thinking these kind of thoughts on a warm Spring evening, yet my mind goes back to the number of times I have awakened in an ambulance or hospital bed, and I can’t help but wonder. What is going to happen if I have a seizure some day and don’t wake up? I do not want things to be any more difficult for my loved ones than they need to be, and more than anything, I want things done MY WAY! Really, what is the point of a memorial service if it isn’t done the way I want it? Seriously. I would be so pissed off if I looked down from Heaven and realized that they were playing “The Wind Beneath My Wings” at my service! Or if someone had the nerve to bury me in uncomfortable clothes! I swear, I refuse to go to my eternal rest wearing pantyhose and heels!

Yeah, that’s me. Selfish to the end.