medication · seizures

Hearings Hell, or, Another Week In Limbo

I’ve been on Social Security Disability since 2009, and last year I was informed my benefits were being terminated. See, I’m epileptic, and have fibromyalgia, major depression and chronic migraines, but since I’d gone 18 months without a seizure, they decided I was cured! (Cue “The Hallelujah Chorus” sung by flying cherubs!) Yeah. As if something I’ve been dealing with every day of my life for THIRTY FUCKING YEARS is just gonna go away. I filed an appeal, and asked for a hearing. Tons of paperwork, four different medical exams (their doctor, their shrink, my GP, and my neurologist) later, a hearing was finally scheduled. That hearing was today.
Of course, I have a nasty cold, and go in to see the hearing guy (he told me his title, but I cannot remember it for the life of me) carrying my cough drops & hankie and smelling of Vapo Rub.
The hearings guy (HG) is a hottie, obviously former military, still got that hair cut, and tall!! Big shiny gold wedding ring on his finger tells me someone else thinks he’s hot, too. And he was compassionate, asked good questions, and really listened to the answers. Together we went through my medical records, and talked about my work history. I told him about how sometimes the pain is so bad I cannot lift a coffee cup; sometimes even wearing clothing hurts. That I have a difficult time focusing or remembering, will find myself standing in a room with no idea why I am there. I lose track of words, much in the same way a person with dementia does, and will struggle to name something I’ve known the name of my entire life. Imagine standing in the kitchen knowing you want a donut, but being totally unable to think of that word.
The HG listened to my side, and asked my sister a few questions, and then we were done. He will have a determination for me sometime next week.
Waiting has been hell, and now I get to wait some more. All I want is a decision, one way or the other. The Limbo is a nifty dance; being in limbo, stuck in that in between space, well, that sucks.limbo

 

accident · pain · seizures

Call Me Clumsy

I am a clumsy girl. Always have been. I manage to hurt myself doing things most people do without any problems, like sitting, standing, and even eating. I run into furniture, walls get in my way, I trip over my own feet, and I am the only person I’ve ever met who can be standing perfectly still, and fall over. An ankle will just twist, and suddenly I’m sprawled on the ground, in pain and looking stupid. I’ve managed to bruise every single part of my body at some point, and this does not count the injuries I’ve sustained during seizures.

As I write this, I have bruises on my right arm, hip and leg, as well as my chin. Friday night, in the act of standing up–something most people do without injury– I skidded across the wooden floor of my bedroom when that ankle twisted, landing on a stack of cardboard boxes in the corner. With my face. It was a bit softer than where the rest of me landed,  the floor and wall. I swore like a sailor, and spent the rest of the evening with am ice pack on my face. By Saturday morning, my face was fine, but my leg hurt so badly I spent the day with it iced. My right wrist is still killing me; that’s the wrist I’ve broken twice, and it hurts all the time!

My dream is to go an entire week without a new bruise or injury. To not look as if I’ve been the victim of a bad beating, or car accident. Until then, I will keep buying arnica, and  make sure I always have ice packs and ace bandages around!

Internet · Michele · money · moving · realizations · seizures · Shel

Questions Worth Asking — And Some Answers

A while ago, someone sent me a link to a page entitled ‘25 Beautifully Illustrated Thought-Provoking Questions.’ I glanced at it, thinking “Hey, that’s nifty,” bookmarked it, and went on with my life. Today I stumbled upon it again, and a few of these questions hit me right between the eyes.
The last few weeks have been rough, and I’ve spent a lot of time feeling sorry for myself. Complaining, whining, bitching, whatever you want to call it, I’ve done them all-in spades. (There is a reason I called this site “Read Between the WHINES!”) Not enough money, bad health, bad weather, too many stupid commercials, nothing good to eat, blah blah blah. The worst thing was, after two-and-a-half years without a seizure, I had a whopper of a fit. Ended up with a huge headache, sore muscles and a nasty bitten tongue. Poor Jonna.
Then, as I was scrolling through these photos today, this question struck me.
23

Of course, I am aware that others have things much worse than I do. I’ve always been aware of that, but sometimes I forget. When I began having seizures at age 15, I took it in stride, and never made a big deal out of it, partly because my friends didn’t. If my friends had flipped out, I might have, but not one of them did. I’m sure there were people in our small town high school who thought I was a weirdo, but I was not aware of them. My mom always took it the hardest. And when I began seeing specialists at the OHSU Epilepsy Center, and met young people who had never been able to have any kind of normal life because of their seizures, that was reaffirmed. I was able to do almost everything that so-called normal people did: I worked, I had a home, a life. I never had to wear a helmet, or be confined to a wheelchair. For a long time, I even drove! (Looking back at that, I am amazed at how careless I was with others lives!) Many people who have the type of seizures I do (tonic-clonic, formerly referred to as grand mal) often lose control of their bladder and/or bowels during a seizure. I have always been extremely thankful that this has never once happened to me!
So yes, I am aware that others have things much worse, in many areas. I am struggling financially, but what that really means is that I don’t have spending money, and cannot afford to move. I am not homeless, nor will I be; nor am I going hungry. My family is always here for me, and I for them; so many don’t have that. So, I cannot buy a new book, or get a manicure. I have a perfectly good library card, and a drawer full of nail polish. So, I can’t afford that gym membership. I’d probably never go, anyway! I have perfectly good walking shoes, and the neighborhood behind us has sidewalks.
14

This month I turn forty-five years old, and shortly after that, the anniversary of Michele’s death arrives. I miss her every day. If Shel was anything, she was positive, and she would want me to celebrate what I have, not what I am missing. Somehow, I think finding these pictures was her way of reminding me of that.

 

Colorado · Facebook · finances · goals · Portland · resolve · seizures · writing

First Step

After months of being unsure about what to do with the next in my life, a Facebook post on conversation with an old friend has clarified some things. I know what I’m doing next. Kind of.

Yesterday, my friend Elissa, who I’ve known since wee both were students at what was then Mesa College in our hometown of Grand Junction,  posted that she’s thinking of opening a school. After five years of saying no to God’s prodding, she’s saying yes. She called, and we talked about it, and about the possibilities of my joining her in this venture (along with the reasons for the school, which I won’t get into, because that’s her story, not mine), and somehow, we got into a discussion about my returning to school for my Master’s degree.

I have a BA in English, and a few years ago, right after my divorce, I began classes for the graduate program in Early Childhood Education at Portland State University. I enjoyed the classes, but I was very nervous about taking the test required for actual admittance, and my financial aid was shaky. So I quit. (I’ve quit a lot of things in my life; it’s a pattern I’m not proud of, one I’m trying to change.)

I always loved being in school, and I miss it. If you look at my college transcripts, that’s obvious: I studied at three different schools, changed my major a number of times, and took ten years to finally graduate! Then I took courses at two community colleges later!  Up until the last four years, I’d spent most of my life in a classroom of some sorts, either as a student or a teacher. No wonder I’ve felt so lost these last few years; I’ve away from my native soil!

With a Master’s degree in ECE, and all my years of teaching experience, I could qualify as a Director of a preschool, which would be pretty nifty. I’ve not made a decision yet what degree to pursue, just that I’m going to do it.It’s at least the beginning of a plan. Taking a step forward in my life, even if it’s a baby step.And oddly enough, I’m not scared at all this time.

God will put me where He wants me to be, doing what He wants me to do. I’ve always believed He had a plan for me, that He was watching over me for some reason, and I’m pretty sure that sitting in this chair watching Golden Girls reruns isn’t it. He kept me safe – well, alive, anyway – through all those seizures, and accidents caused by seizures – car accidents, falls in the shower, tumbles down stairs,  all that crap –  and I don’t think it was so I could end up sitting around, doing nothing, wishing for a different life, making no impact on the world around me, or even the world within me. He didn’t create me to be this barren landscape.

blogging · cleaning · Craig Ferguson · insomnia · medication · pain · reading · RLS · seizures · sleep · twitchy feet · yoga

Insomnia


I really should be in bed. Instead I’m sitting in the living room, watching ‘The Late Late Show with Craig Ferguson’ and writing. I haven’t been sleeping well lately. So, I apologize if I begin to ramble. Sleep deprivation will do that to you!

Insomnia isn’t a new thing for me–it started way back at the dawn of time, when I was in high school. Always the same pattern. I fall asleep easily enough, and sleep well for a few hours. Then, usually about 2:30 a.m., I wake up, needing to pee, and after that, I’m awake for hours.
Sometimes I’ll be able to fall back asleep for an hour or two, but my twitchy feet usually watch me back up.
Oh, yeah, did I mention I have RLS? Restless Leg Syndrome. It’s a pain is the ass (or rather, legs) neurological condition that causes a tickling feeling in the legs or in my case, the bottoms of my feet. It makes my legs jerk so hard sometimes that I kick like a horse! Nobody is really sure what causes it, but we do know that many things make it worse; among these are the anti-seizure medication that I’m on. Yep. Finally found a med which will control my seizures (whoohoo!), and it makes my feet go crazy, causing an increase in insomnia. Wouldn’t you know, lack of sleep is a BIG trigger for me & seizures…
Anyway.
I’ve tried all sorts of insomnia remedies: medication, bedtime yoga, Sleepytime tea, self-hypnosis, melatonin & Valerian, and a white noise machine. Not many have been successful for long. I’ve heard all the advice, and have tried most of it, to little avail. I simply don’t sleep.
I’ve also tried many many remedies for RLS, most of them home remedies found online. So far none have worked for long. I’ve taken magnesium citrate before bed; I’ve rubbed my legs & lower back down with apple cider vinegar; I’ve done a series of strange exercises in the dark. The thing that worked the best was eliminating caffeine & sugar from my diet, which I did to get rid of migraines. Discovered it helped the feet. Of course, now I’m back on the coffee wagon, (or did I fall off the wagon?), so I may have to fix that… I do know there are a couple of medications available for RLS, but so far, I haven’t tried them. Didn’t want to add one more med to my already large collection. If things don’t improve, I may change my mind.
There was a time when I’d get out of bed and clean my apartment in the middle of the night, but those days are gone. (We have neighbors here who are very sensitive to noise, and even running water after ten seems to annoy them, so no more scrubbing the bathroom or rearranging kitchen cabinets!) Some nights I turn on my bedside lamp, pick up my book and read; other night I get online and discover strange new blogs. Most nights I simply lie in the dark, listening to the fake ocean sounds from the white noise machine, trying to count backward from one hundred, as I take deep, even breaths, and hope I’ll relax enough to to fall asleep again.
Tonight I’m going to finish watching Craig Ferguson, then stay up as late as I can, in hopes that I can reset my inner alarm clock a little, or at least throw it off balance. And then, with any luck, I’ll get some sleep, dammit!