The Ramblings of Rolladyke

Quiet but Listening

2012-01-30T18:46:00.000-03:30

As you've no doubt noticed, I don't post around here anymore. I've even fallen silent on Twitter.

This isn't because I've stopped caring, I've just re-evaluated what my message is to the world.

I will still continue to use this profile for commenting on the blogs which all of you have so candidly written, allowing me tiny glimpses into your lives. I always read, and will make an effort to say more.

But my blog, my message, has moved. If you so wish, you can find me on my new blog, Sass and Spasticity, which is a more anonymous look at sex and disability. If not, I understand. One thing that will continue to be posted here is the Child from Holland series- This will also move to my new blog, but any updates or further parts to it will appear here.

My new twitter can be found here at Sass and Spasm.

Again, I want to thank you all for the last few years of friendship and education and understanding.

I'm still listening. I still care. I'm still in awe.

Yours fondly,

The child from Holland

Ashley/Rolladyke

Apology

2011-06-30T23:26:00.002-02:30

This is the response I received from the Motorcycle Ride for Dad in response to the letter I sent them in my last post.

Hi,

I am very sorry to hear of the loss of your Grandfather. I know personally how hard it can be to lose someone close to you from cancer.

We’re sorry to hear that one of our ads has caused you distress, and although that wasn’t the intent I can appreciate how it initiated that response.

You are correct that the objective of the ad is to raise a reaction from people so men understand that they need to get their prostates checked. With over 800,000 Canadian men currently walking around Canada not knowing they have this disease it’s an important message to send. Luckily over 90% of cases can be successfully treated if diagnosed early, but over 50% of men don’t see a doctor on a regular basis, or get their prostates checked. It’s crucial that we grab their attention so they can see what could happen if they don’t get a simple PSA and DRE.

Our goal as an organization is to spread awareness and fund research, so that men can continue to be there for their families and friends for years to come. The chrome and leather grabs the attention of the masses on ride day, the research helps find hope for the future, and the awareness has the potential of saving men’s lives today. That ad is one of many awareness tools we use, and we wanted it to cause a take-charge reaction, because in the end that is what we are asking men to do—react, take control of their health, and get checked.

Our intent was never to cause pain or guilt for those men, and their families, who have lost their fight against prostate cancer, and we sincerely regret any pain that viewing it has caused.

Kind regards,

[Name Redacted]
National Communications Manager
Motorcycle Ride for Dad

A Father's Day Post- Tissue Warning

2011-06-17T19:53:00.000-02:30

This is my grandfather. I took this picture before I turned 10 years old. It still sits on my dresser today.

Today is the 12th anniversary of his death from prostate cancer.

This is what I saw in the paper today.

Once I picked up the pieces of my broken heart, this is what I wrote

Dear [Name removed for privacy reasons, however it is available on the website listed in the ad]

As the granddaughter of a wonderful man who lost his 4 year battle with prostate cancer on this date in 1999, I was extremely disappointed to find the "There's No Excuse for Dying of Prostate Cancer" ad in the Friday Edition of my local newspaper. I fail to understand why the Motorcycle Ride for Dad- which I had previously thought to be a wonderful organization, a flash of leather and chrome and "Dad power" amid a sea of pink ribbons- would feel the need to trigger guilt and regret in the minds of prostate cancer sufferers and their families on this weekend of all weekends, considering that Father's Day is Sunday, June 19.

No excuse for dying of prostate cancer? That's called victim blaming. Is my grandfather to blame for the fact that he was already in his seventies when his prostate cancer was discovered? Is he to blame for the shame he endured while wearing a catheter and leg bag for four years, the discomfort and infection? Is he to blame for the illness that his palliative radiation brought on as they struggled to get the cancer under control enough to allow him to live his final days free of pain? This very treatment stole the remaining strength the cancer had not eroded and landed him in a hospital bed in uncontrollable agony from bone metastases during his last June, a month that every Dad and Grandfather deserves to look forward to with anticipation of crayoned cards and new ties and socks. Well, my grandfather's last Father's Day card was slipped into his casket by my 5 year old sister, his last socks and tie were purchased for him to wear in his casket... and your ad wants to send the message that this was his fault? Well, there's no excuse for forgetting either. There's no excuse for forgetting that behind every Dad that the Motorcycle Ride is for or has ever been for there stands a family fighting for their hero, or, all too often, grieving the loss of him, and we continue to grieve that loss long after their pain has ended.

I believe I understand the message that you wanted to send with this campaign: That screening and early detection save lives. But words are powerful things, something which I would hope the National Communications Manager for the Motorcycle Ride for Dad would understand. I believe you knew that ad would get read this weekend as thousands of Dads across Canada scoured the paper to rehash Game 7 of the Stanley Cup Finals, for better or for worse. And maybe it caught the attention of some of them- Maybe some of them will get screened now, or will come out to their local portion of the Ride. But it also caught the attention of at least one grieving granddaughter, adding a pang of guilt as I sift through many years of beautiful memories of the only man in the world I would have ever gotten on a motorcycle for, and a man who would have been very pleased to see the Bruins take the cup.

With a broken heart,

Rolladyke

I'll be interested to see what response, if any, I receive, but I really felt like I had to send it.

Hey, You

2011-05-11T23:08:00.000-02:30

Yeah. You. Let me tell you something about Blogging. It's a snapshot. And it's a Godsend. It helps get out the words that are screaming in your head- That maybe you can't say to anyone else, not even the people who love you most in the world. Maybe they're angry words, maybe they're sad words, maybe they're deliriously happy words. Maybe they're something you wish someone had said to you. You can click "Publish Post" and put those words out there and leave them in Cyberspace and get back to living your life.

And sometimes, when you put them out there, something magical happens. Sometimes people crawl out of the woodwork of this big thing we call the Internet and they say "Me too" or "I'm listening" or "Have you tried...?" and there's a wonderful thrill of connection and you feel like those raw, painful words, or those silly giddy words, poured out in a moment, mean something to someone else.

Comment, by all means. Challenge, educate, enlighten. But be respectful.

Blogging is a brief moment in someone's life, not a 24/7 live feed. Don't use blogs to judge. If you don't like what you've read, then I'm sure there's a big red x in the corner of your browser just like there is in mine.

"Authenticity" of blogs? Well, okay, but you better be ready to let someone judge the "authenticity" of your painstakingly posed photographs.

((This is not to say that people are not hurt when a blog they have come to read and believe in is revealed to be wholly false, such as about a person who never existed))

There are plenty of pieces- good and bad and mundane- of my life that do not make it to this blog. I am more than what you see here. And I choose to believe that the people behind the blogs I read are more than what they show me.

I'm doing my best, and I choose to believe that about the authors of the blogs I read, too. If you don't, if you can't, then maybe you should stop reading blogs. I know you should definitely stop reading mine.

A Child From Holland Part 3: Border Strip Search

2011-05-01T18:23:00.001-02:30

First, a note on this series. When FosterAbba encouraged me to turn A Child From Holland into a blog series I had no idea where I would continue to find material. As it turns out, everywhere.

I also want to acknowledge that this series does have a particular slant, focusing as it does on the differences in citizenship between Holland and Italy. This is only one piece of my own story, let alone the stories of other children from my country. It`s just this is what is coming to the forefront to be blogged about.

Border Strip Search

Occasionally I browse Hopeful Parents, searching for further answers to my continuing citizenship dilemma. My own mother has never talked about her feelings about my experience, so the parents who blog there amaze me with their words...actually, now that I think about it, my mother`s difficulty with expressing how it was to raise a child from Holland may have had something to do with why I found many of my beloved "Blogger Folks." But that's another post entirely.

Julia Roberts's Bodies of their Own was the inspiration behind this installment of "A Child From Holland." I, too, was a child who was often required to disrobe for medical professionals. My earliest physiotherapy sessions were conducted in a diaper only, doctors examinations were semi-annual at least, and these were doctors who, unlike my family doctor who would only look at the throat that hurt or the ear that ached, wanted to see all of me.

I don't remember having a problem with it, or with having an army of people change my clothes. My mother changed me, my grandmother changed me, occasionally even my grandfather changed me before I went to school. He even usually did so with a cheerful exclamation of "Let's skin the bunny!" (Perhaps that's a Newfoundlandism.) When I *did* go to school there were paraprofessionals who took over the job of putting on my coat, taking off my winter boots, changing them for my braces and shoes, even changing me when I had accidents. It was a set of the same four parapros, usually, but there were occasionally substitutes, and I don't recall refusing to change- or even thinking of refusing to change- for any of them.

I had been taught, of course, that my "bathing suit area" was private, and that any touch that made me feel uncomfortable was a bad touch. I had been read all the right books, like The Secret of the Silver Horse and Tom Doesn't Visit Us Anymore. But somehow I knew that medical things were different, that medical touches were to be borne even if they were uncomfortable, that the stitches had to come out or the catheter had to go in, or the stretch had to be held until the count of ten, and I could scream and make it difficult or I could giggle helplessly and it would be over faster.

I didn't realize that some people- people with that magical Italian citizenship- could say no to their doctors- until one day I saw my specialist on the other side of the border.

It was the summer I was eleven, and I had had major surgery on my femurs and hamstrings and hip flexors. I was being very closely followed, every week or so, I think, and I was in a day treatment program. One particular week there wasn't space for me to be seen in Cerebral Palsy clinic, so I was seen in a general Orthopedic Clinic alongside Italian children who had had the bad luck to break bones in the summertime. I was alone, under direction to return to the Recreation Therapy room when I was finished, but the girl on the other side of the curtain was Italian, so she had her mother with her. I still remember that she had surgery for her knee, and she was refusing to take off her jeans so Dr. James could look at where the healing surgical sites were.

I remember thinking that jeans were never supposed to be worn to an orthopedic appointment and feeling a bit superior in that knowledge.

Her mother asked her a second time to take her jeans off, and the girl on the other side of the curtain still refused, Dr. James asked very nicely and explained that he needed to make sure everything looked okay and she still refused. Surely now, thought my little, medically-conditioned brain, someone would *make* her take the pants off, say that they were very sorry but some things had to be done, but it didn't happen. The next thing I knew, Dr. James was outside the curtain, in the little tunnel between her curtain and mine, taking notes on his little handheld tape recorder,

"Patient ambulating well, but due to intense modesty I was unable to fully examine her."

I know now that that girl's medical appointment was private, but at the time I didn't know much about medical confidentiality. We all had our therapy in a big gym and it was common for older kids to encourage younger kids or for peers to cheer each other on or pressure each other into compliance, so when Dr. James came around my curtain, I demanded,

"How come she didn't have to take her pants off! If I wouldn't take my pants off you'd laugh at me and get someone in here to do it!"

Bless Dr. James, he sat down on the examining table with me and admitted that he probably would laugh if I refused to take my pants off and that he probably would call someone in to do it, but he knew I wouldn't refuse to take my pants off because I was working so hard to get better. Eleven year old Rolladyke was satisfied with this answer.

Now, at twenty five, I still don't know what the real answer is for parents on either side of the border, let alone children. We need to teach children, regardless of nationality, to respect and own their bodies, but we also need to instill that it's important to be honest and open with the professionals that help them, and that part of that honesty means taking off clothes when appropriate and showing the right body parts, like teeth to the dentist and eyes to the eye doctor. But what I will probably never forget is the difference between that girl from Italy and me.

A Child From Holland, Part 2: Getting Something Out Of It.

2011-04-26T23:33:00.000-02:30

I had no intention of making a series of A Child from Holland posts, but Foster Abba asked me an important question- "Then what happened?"- and I realized I had more to say. So here we go. As in other posts, all names that are not mine are pseudonyms.

This is something that's been brewing in the back of my mind for a few days... friendship and love... I went to a small, denominational school until I was 13. There were social pros and cons to that- I had most of the same people in my classes from Kindergarten on up, so they knew me and my walker and my Holland wooden shoes and crazy walking. They knew other things too, though, like how I had bathroom accidents and sometimes got extra "attention" in the classroom from a paraprofessional, which, as we all entered the general insanity of adolescence, just gave the kind of kids who collect ammunition new and different weapons to use against me. I'm not saying I was their only target, I was different, a sickly member of the herd worth turning on, but intellectually I was their peer, and I was supposed to "just" have CP.- Unlike the English Language Learner who was another tortured member of the class I *knew* what they were saying and doing to me, and unlike the student who had the mysterious diagnosis of "Behavioural" I didn't melt down and run from the classroom to escape. (There were days I wished I could.)

All of that is just to say that changing schools at 13 was good for me. I met new people and reinvented myself a little...including buying 5 identical pairs of pants so no one would ever know if I had to change in the middle of the day. And it worked for awhile..until one day, at 14, I was taken aside by my paraprofessional.

"Who walked you to class yesterday, Ashley?"

"Um...Annie." Annie had become a very close friend the year before, and our madcap, giggling dashes to class were commonplace, her pushing my wheelchair through the throng while I balanced a precarious tower of books and binders on my lap- hers and mine, usually 6 or 7 books in total and the corresponding binders. It had seemed a good system- my Individual Student Support Plan (my province's name for an IEP) termed it "Self Directed Peer Support." My paraprofessional was still available, but usually we left her in our wake, planning lunch or the upcoming weekend as I peered for obstacles around the teetering pile of books.

"Well, that won't be happening anymore."

"Why?" I looked around- Annie hadn't arrived in the classroom yet, and, already prone to anxiety, I began to think the worst.

"Her mother called the school yesterday and demanded to know why it was Annie's responsibility to push your chair. I have to do it now, I'm sorry. I'll see you at 9." She slipped out, a nice enough woman who I liked okay, just as Annie found her way in and took the desk next to mine.

"You could've told me!" I burst out.

"I didn't know." Annie promised, looking right at me. "Mom took me to the doctor yesterday and he asked about my screwy thumb." Annie's thumb had been broken years before and had healed strangely. It didn't hurt her, but the doctors were trying some strange things with bracing that made no sense to either of us. "He said it still isn't straightening, and asked me if there was anything strenuous I was doing. I said no, but Mom started freaking out about my pushing your chair. The doctor said it probably made no difference, but she told me today she'd called the school, I'm so sorry."

--

Little did I know this was essentially the end of Annie and me. Her mother had decided, plain and simple, that I was a burden. That her daughter wasn't "getting anything" out of our friendship and was being taken advantage of. As a result, Annie was no longer allowed to visit my home on the weekends or to talk on the phone. She kept assuring me- and I believe she meant it- that I had done nothing wrong, but no teenage girls' friendship can flourish without girls nights and telephone conversations...and our days of giggling in the madness of the halls were over- Once again I was picked up by my adult parapro 5 minutes before each class ended and deposited in the next one. Annie tried to accompany us, but it wasn't allowed. I was "the different one" again...

My first love's mother also had this problem. We were fine for awhile, but then it didn't matter what either of us said, there was "inequality" and "deserving better" and we drifted apart.

Now, I have Immodest-Lady...and her mother has been the most blatant of all...but gifted with maturity and romantic love, she's fought back, refusing to believe it, reassuring her mother (and me) of all the wonderful things I do for her and for our household, even though they might not be as visible as her helping me with some caregiving tasks...

But all of this leaves me wondering- Do the mothers of neurotypical "Italian" children view all friendships with such scrutiny? Do they teach their children that friendship isn't a give and take, but is, instead, an opportunity for advancement? I hope not.

I wish I could take the three mothers in the above stories- Annie's Mom, First Love's Mom, and Immodest Mom, and ask them, if they were mothers of Holland children instead, wouldn't they want cross-border friendships for their children? Wouldn't they spend nights begging The Powers that they believe in for just one person to *see* their child?

On Being From Holland

2011-04-10T19:42:00.000-02:30

This post is meant to be sort of an expanded version of the comment I left over here at the Final Maze. I am a kid from Holland. I know that my Mom was very young when I was born, and I know that she wanted me very much, but I also know she expected me to be Italian, and there's been a grieving process around that.

See, babies, even brain damaged babies, are little bundles of potential, and the pediatrician who diagnosed me was floored by the fact that at 14 months old I was speaking and interacting, so when Mom asked for pamphlets or books on kids with CP she was told she couldn't have any- "because all of those are going to be about kids way worse than she will be." So Mom was kind of led to believe that though I was born in Holland I'd soon have a passport to Italy. And therapy, at least at first, looked like it was going to be that passport. Early physical and occupational therapy happens 3 times a week, and I had therapists who were well used to sobbing babies and didn't let that stop them from pushing me to do what they wanted me to do.

At three years old I had my first surgery, a muscle release to unbend my knobby knees and loosen my heelcords to stop my toe walking, and voila! All of a sudden my ticket to Italy seemed to be within reach: All I had to do was learn to walk! (One of the joys of being from Holland is being old enough to remember your mother's jubilant sobbing as you take your first steps)
But...maybe it was the wooden shoes... I still swayed like a ship in a gale and still fell. Often. It seemed to be enough for the people around me, though, and if I had never gone to school I might have lived my whole life in happy, funny-walking Holland.

I did turn five, though, and I did go to school, and I realised for the first time that most other people were from Italy. They didn’t know the words that were so commonplace in my world like “physio” and “walker” and “gait training” and what was more, they had *done* things that we did not do in Holland like cross the street alone and climb snowbanks and make it to the bathroom on time *all* the time. Italy started to look like a *very* cool place. Still, I comforted myself that there were cool things about Holland too, horseback riding lessons and games of Critter in the Candy among them, and...I hadn’t seen any *adults* in Holland, so surely we all must move to Italy at some magical age. I remember thinking that that age was eleven the summer I couldn’t get enough of the Full House tie in books. Stephanie Tanner could take a shower and mow the lawn. I didn’t have a lawn to mow, and didn’t care to, but a shower...

I turned eleven, and twelve, and sixteen, and still walked in a wild, crazy swaying pattern and crashed to the floor on a regular basis, and more and more I looked over the border into Italy and saw the kids I went to school with doing all their Italian things. It was hard to stare for too long, though, so I’d look around Holland... but most people I knew there didn’t venture to the border. I felt like I was in exile, not a citizen of either Italy or Holland.

Looking at the world from the wreckage of what was supposed to be my life.

2011-03-16T13:18:00.000-02:30

**Not a shiny happy post. I'm sorry**

Have been struggling with what to say lately. I just don't know. I started this blog absolutely sure I would go into psychology, wanting to read the blogs of parents "in the trenches" and offer what support I could. I still want to do that...the support part. But I couldn't hack it in university, and I moved out of my mother's house, and my mother's marriage disintegrated and things are so much better....except I don't have my education, am struggling to manage with just barely enough money, am drowning drowning drowning and waiting for a break...

Physio twice weekly... so tired...don't want to leave the house anymore than that...

I never knew it was possible to be so happy with some things and so lost with others.

I don't know what to say anymore. I don't know if there's anything even worth saying.

Last Surgery Post- Contains Xray image

2011-01-06T17:38:00.000-03:30

This is what all the fuss has been about.

The Real Santa Claus- Possible tissue warning

2010-12-26T20:08:00.003-03:30

Hi, all- I hope you've had happy and peaceful holidays so far.

Mine were a little different than normal, but still very nice, but this is not a post about my loot from Santa or exactly how much junk food is in the house at present. Instead, this is a true story that was shared with me by Lady's cousin Chip who is a NICU nurse, as we spent time with their family on Christmas Day.

***

"I saw the real Santa Claus last night," she said to me, and I smiled patiently, thinking she was teasing.

"Oh yeah?"

"No, I really did. He's been the Santa for the Downtown Christmas Parade and for the Children's Hospital for the last 30 years."

"That's commitment," I remarked. "He must be a really nice man."

"You have no idea. He comes into the hospital every year the week before Christmas and visits every single child. Every ward, every floor, from Pediatric Oncology to my tiny sick babies. He takes a picture with each one, and comes back on Christmas eve to deliver the developed pictures to every little boy and girl, or Mom, who's still there. The kids who get out get them mailed to them."

"Was he by last night?"

"Yes- He went to every single bed space and incubator. There was a little girl there about 5 years old who we had let in because it was Christmas Eve. We told her Mom he was coming and she said the little girl was kind of afraid of Santa but she hoped he could get some nice pictures of the little girl because she wouldn't sit on the lap of the Santa at the mall. Her baby boy was really sick too, so she liked the idea of having their picture taken together by our Santa."

I was well hooked on the story by this time and I asked,

"How did she react to our Santa?"

"Well, she heard his bells coming down the hall and she ran to peek out every minute or so, and come back to tell her Mommy 'Mommy, Mommy he's coming!' When he came in, he doesn't come in like most Santas with the big "Ho Ho Ho!" He's very meek and mild because most of our kids are so sick, so she sidled up to him and he showed her a book he had made about 15 years ago that shows the plane he uses when there's no snow, and the special entrance he uses to get into the hospital."

"That's amazing," I could feel myself smiling. "Did she sit up in his lap?"

"She sure did! Her Mom was so happy she was snapping away with her own camera trying to capture it. Then Santa asked her what she wanted for Christmas, but she only said that she wanted him to see her brother because he was really sick."

"Did Santa go over to the incubator?"

"Yup- He's got the poses down to a science. If the baby can be taken out he'll take them up in his arms or just cradle them. If they can't come out of the isolette, he'll peer in at them, it's so sweet."

"What a beautiful story...what did the little girl do then?"

"She was really proud of the baby, and Santa's daughter happens to be our pediatric cardiologist who makes her rounds with him. Santa carries a bear on his mailbag every year and he chooses one child in the hospital to give it to. He tried to give it to the little girl, but she wouldn't take it at first because she was afraid he might be lonely for it."

"I can't believe there are still people like that in the world," I said, feeling the need to track down some tissues rather quickly.

"Tell me about it." Chip answered. "His daughter just looked at him with such admiration- I mean everyone looks at their Dad with admiration- but this was just *awe* at what a good person he was."

"It must be a calling."

"It must be. Do you know what else he did last night?" Chip's eyes began to fill as she brought it up.

"There can't be more..."

"Yeah, there is. We have one baby who we've had for months, and whose parents don't come to visit him. Santa asked why he was all alone. We explained that he didn't get visitors- no one would have known any better if he had just passed that baby by or had just leaned in over the incubator for a quick picture- but Santa asked for a rocking chair instead. He took that baby boy out, with his ventilator tubes, and rocked him to sleep. Everybody cried."

"I bet they did!" I could barely get the words out. "I guess you really did see the Real Santa Claus last night."

Taking a Break From Surgery Posts to Answer a Question

2010-12-01T16:04:00.002-03:30

This post published about 4 times before I was ready. I'm sorry if its shown up in your reader multiple times

Hi, my name is Ashley and I have food and sensory issues...

Hi, Ashley

CP is a mixed bag of gifts and troubles. Sensory Integration Disorder is one of the... not so nice parts about it. I have sensory needs that directly impact my life. One of the biggest issues I have is around food- I have an almost phobic reaction when presented with and expected to eat "new" foods. (For those of you who are coming to Orlando, no worries. People can eat whatever they want around me)

The other piece to my food puzzle is anxiety. CP affected my swallowing fairly significantly when I was a baby, so people were *very* anxious while feeding me. I picked up on that, and became anxious about food in response.

I was giving some ideas on another blog as to how someone's kiddo with sensory issues might be able to eat a wider variety of healthy foods, and promised to post about my own strategies. Here they are, in no particular order.

Relax, relax, relax: Make mealtimes and food as easy as possible. Do not bribe or punish for refusing or trying new foods. Praise, even just for having something new on the plate, however, is good
Supplement: Until the kiddo is able to eat a wide variety of foods, use pediasure and or vitamins to make sure nutritional needs are being met. (This helps a lot with relaxing) You may need to have bloodtests done, especially for B12. I was severely lacking in B12, and I choose to supplement through monthly injections
Offer, offer offer: While giving your kiddo what they are able to eat, don't be afraid to offer what you might be eating. Do this in a no-pressure way. Your kiddo might surprise you and say yes one of these days
Positive Peer Pressure: Have your child watch others eat- People they look up to or respect. Lunch dates with older siblings or heroes is a great idea. Give your child things they are comfortable eating, but offer what the other person is eating too. This can also help with a really embarrassing issue that can come up: Not knowing *how* to eat a certain food because you've never eaten it before. Example- How do you eat pizza? How do you pick up a chicken wing? Sometimes "monkey see monkey do" is less scary than asking

Finally, this is my method for trying a new food. It might take several "offerings" but it works for me.

Get used to the smell of the food. Maybe even sniff it.
Poke it with one finger (you would be surprised how hard this can be!)
"Play" in it with the proper utensil- How does it feel on the spoon or fork or chopstick?
Put it in your mouth- Have a napkin nearby. How does it feel on your tongue? If you need to spit it out, that's okay.

If all of these steps yield positive results I can usually add the food to my "I can eat it" list.

Happy Eating!

So...very tired... but hot pink

2010-11-26T15:12:00.000-03:30

Healing is hard work. Usually I catch a nap in the middle of the day and head to bed early. But I had an appointment with Dr. Rock yesterday. Everything looks good- My foot is, in his words, straight as an arrow. I'm going to be in cast for quite a while, though, so once the stitches and staples were out I decided to pick a colour. I think you'll agree it's very Rolladyke

Surgery 2010- Day 1- Part 1- Checking it Twice, and Off to Sleep

2010-11-19T10:43:00.000-03:30

Lady and I arrived at the hospital at 6 AM Newfoundland time with my suitcase. I didn't see the point in getting dressed just to have to get undressed again, so I went in fuzzy blue bunny pyjamas, because that's how I roll.

We made our way to the Day Surgery unit, even though I was having nothing resembling day surgery. I didn't have to wait long before being called back to a room that had 6 or 7 curtained cubicles with stretchers. My nurse introduced herself as Wendy and asked when I had eaten last, to be sure I had fasted from food at 12 midnight and clear fluids from 4 AM as requested at pre-op the previous day. When I told her I had, she gave my my usual morning meds for acid reflux, plus an *a*t*i*v*a*n for pre-surgery anxiety, which I had in spades.

I honestly think that with 8 other surgeries under my belt before this one, I can have some pretty serious trauma responses to hospital smells and procedures. I tried to remember that breathing is essential to living as I put on a gown and little booties. It was also a little nervewracking to have to correct the nurse a few times as she said "You're having a right foot triple arthrodesis right?"

"No no, left! Please don't have the surgeon open the right foot, that's already done!"

Had a few quick teary moments as I realised just how *close* I was to putting myself in the hands of the new, unfamiliar Adult healthcare system. I had complete, multidisciplinary CP care until I was 19.

They took me from Lady at about 7:30 AM and brought me in further. I was on a line of gurneys and people kept making sure my name was Ashley and that I was having a triple arthrodesis. (I was getting tired of it until someone asked me if my name was Kelly, and if I was having surgery on my stomach. Then I made sure I answered as clearly as possible- Every time.)

Finally, Dr. Rock's intern Dr. K came to see me and I *begged* him to initial the proper foot. He obliged. In big letters. Then I met with Dr. Bird, the resident from Anasthesia and her boss, Dr.Nibble.

(I'm loving the pseudonyms here!)

I have a history of hallucinations and breathing difficulty with heavy doses of IV m*o*r*p*h*e*n*e, so we chatted about that, and agreed to use general anasthesia, but also to place an epidural and deliver a "numbing" medication, similar to what you receive at the dentist, that would bathe the nerves of my spinal cord and numb most of the initial post-surgery pain. This would also require placement of a urinary catheter, but I was fine with that.

Part of my Cerebral Palsy gives me serious spasticity in my left hand. It's good for typing, but not much else. My right hand does everything for me. Therefore, I asked Dr. Nibble to avoid putting the IV in my right hand at all costs, as I wouldn't even be able to feed myself if it was out of commission. He agreed. However, when I made it into the OR itself, he found that even with a shot of "freezing" medicine he couldn't get a large enough needle into the vein in my left arm or hand to sustain me after surgery, and that the right hand didn't look much better.

I had two choices; I could have Dr. Nibble put me out with the small needle he managed to get into my arm and then he could place a "central line" in my neck, straight into my jugular vein, but if I was unconscious he couldn't administer the epidural for pain control, thus putting myself at risk for lung problems and a psychological condition known as ICU psychosis. Or, I could stay awake for the central line, he would talk me through every step, and then I could have more anti-anxiety meds by IV before the epidural was put in.

That a*t*i*v*a*n must have been good stuff, because I agreed to the central line while awake as long as he would talk to me and someone else would hold my hand. The nurses working that day were ex-pediatric nurses, so they were very experienced hand holders. Dr. Nibble seemed relieved, and told me that was a really good idea.

He froze the area on the right side of my neck with an injection he warned me would sting (it did) and then, while I looked to the left, draped my face in sterile pads. The nurse who held my hand also held up the drapes from over my eyes so I could see *her*, just not Dr. Nibble. After the freezing, he found my jugular vein with ultrasound, and then passed a guide wire into it. This was kind of weird- Lots of pressure, and a metalic taste in my mouth. He had to do a little bit of fiddling to get the wire exactly where he wanted it to go- Then he slid a hollow rubber catheter over it, and pulled the wire back out. Some tape, and two stitches in the already numb skin of my neck, a clear plastic dressing, and I was the proud owner of a central line.

I don't remember much of *exactly* what was said that day, but I do remember my hand holding nurse exclaiming,

"God, Josh," calling Dr. Nibble by his first name. "Don't let her see you, you're *filthy*- Can someone change Josh's scrubs please!" I went off into gales of giggles at this- They had tried so hard to keep my anxiety low, but I am enough of a medical geek to have known the only thing Dr. Nibble could have been "filthy" with was my own blood- Jugular vein is under a nice bit of pressure, and he had been digging in there with wire and needles and catheters oh my. He admitted it when I asked, then pulled up a sedative into a syringe.

"Nice big drink for you before the epidural." He promised. "You've earned it!"

I did feel a bit floaty after that, but I remember being turned onto my side for the epidural, and then a feeling of tremendous pressure in my spine. I think I whimpered a bit, because Dt. Nibble remarked, "You *would* be difficult to get an epidural in, too. Is the pressure going straight down your back? To your tail bone?"

"No... Left leg."

"That's not right, we''ll try again." A brief rest, then more pressure.

"Straight down this time." I said- And then I don't remember anything else until after surgery.

Here's to the next 100!

2010-11-17T19:30:00.000-03:30

I'm home! I didn't have the stamina for blog checking via Blackberry or laptop, nor for DVD watching, as I had hoped.

Trying to recap surgery-week in my own mind before I do some posts.

100th Post!

2010-11-10T05:00:00.000-03:30

I'm off to the hospital *very* shortly, but I couldn't resist showing off yet another of Lady's fabulous cakes. She has a knack for ordering just the right message on the cake that will make me smile.

For anyone who missed it, her last cake is here.

Made it through pre-op!

2010-11-09T23:09:00.000-03:30

7 hours and counting. I made it through pre-op testing today and had a good talk with Anesthesia. Now I spend one last night home in my own bed before heading to the hospital tomorrow morning at 5 AM EST. Surgery is at 6:30 AM, EST, if anyone is inclined to send good vibes or prayers during that time.

I will definitely be able to Tweet from hospital, and I've added the feed to the side of the blog. (Username @Rolladyke)

See you all on the flip side!

And now...EDITED

2010-11-01T14:08:00.002-02:30

To see if a heart can actually rip in two.

Any prayers appreciated.

************************************************************************************

Hearts are resilient, and so are we.

Caregiver burnout- Is there anything more insidious? After all, if you *love* the person, isn't that enough to fill the well?

Not always. But it is enough to make you sit back, take a look, take a breath, ask for help.

We're breathing.

Surgery Housekeeping

2010-10-21T12:18:00.000-02:30

Okay. So. Here's the scoop, as I know it.

Surgery is November 10, and I won't officially enter the hospital until that date. It's been so long since I've been in overnight that I actually do not know whether or not I can expect WiFi or not. It's possible that the hospital has its own, and its also possible that my university WiFi will work, as the hospital is technically on campus. I estimate staying anywhere from 3 days to a week, and I don't want to be out of touch all that time.

If I get the Blackberry back in working order before I go in, I'll be able to read blogs and maybe post to this one. If I don't, I'll be taking Lady's text-but-not-web enabled phone and updating via twitter. I'll put my feed on the side here, too, so those who don't Twitter (I don't, not frequently) can also check up if they are so inclined...

I almost don't believe it- EDITED

2010-10-19T10:58:00.003-02:30

But I appear to have a surgery date.

October 27

Edit: I was right to not believe it. November 10th

Just Dwell

2010-10-12T19:13:00.000-02:30

This is a strangely difficult post for me to write, and I'll advise you to skip it if you do not want to hear about my faith. (I wouldn't blame you. Up until a few weeks ago I didn't want to hear about it, either.)

I was raised Roman Catholic and went to a Roman Catholic school until 1997. (Until 1997, Denominational education was the norm in Newfoundland) Culturally, I would say the closest I would describe myself as is "Newfoundland Irish Catholic...but lapsed." When I have said on your blogs that I am praying for you or your family, I truly am. I am begging something for peace for you, or for for a certain outcome. I'm putting my whole heart into it, I promise.

But I've thought- for a variety of reasons- that religion wasn't something I could...access. Something I didn't have a right to. Because I am gay, because I have had past life regressions, because I sense things and know things.

I envied people of faith- especially people of faith who could be good to me with all those things stacked against me.

And then last weekend I went to a wedding. The secret agents mentioned in a previous post were taking the plunge and getting married. They are two of the most loving, giving people I know, and their faith is very important to them.

We arrived in time for the weekly "kinship" group- a small group of people getting together for fellowship and community and prayer. Their pastor is young and energetic, the father of children, a husband- And he knows what an IEP is, intimately. I loved it. I felt myself opening up to him, and to the couple we were staying with, also disabled, and also in ministry, about the "God moments" I've been experiencing or witness to in the last few weeks or months.

Sweet Keri and her trip to Russia

The family at His Hands His Feet and their sweet Selah's lasting legacy

And all of you- my "Blogger Mamas" who are there when I need someone to talk to, who give me perspective with your joys and struggles, who welcome me...

"God's everywhere." I said many times that night. "And I just don't know what to do with it... I'm not... I don't... I'm not that kind of person."

"Just dwell." I was told.

So I am. And it feels good.

Posting about everything but what I want to post about

2010-10-09T18:53:00.000-02:30

I've got a post in the works about how I have a whole new relationship with God and Faith after this week, but I'm finding it really hard to write about, almost like I'm tongue tied. Hang in there, I'll get it out somehow. Also, feel free to skip it, if that's not where you are. It wasn't where I was until this weekend...

In other news, they still haven't scheduled my surgery yet. I see the doctor on Oct 12, so if you'd like to send prayers or good thoughts towards a quick date and a good outcome, I'd really appreciate that.

I've also been bitten by the scrapbooking bug, and have a very happy cat now that I'm home from a quick trip to Ottawa for a wedding.

Also, I'm going to ORLANDO! For those of you I'll see there- It will be so nice to meet you in person!

If you are watching the news, and know where I am...

2010-09-22T22:54:00.002-02:30

I'm okay! Hurricane Igor hit hard, though! If you are waiting for PayPal from me, it will be a day or so, but I haven't forgotten you, internet is spotty here as is power, but I'm hoping tomorrow will be a calmer day.

Paperwork and conclusions

2010-09-16T09:14:00.000-02:30

Dealing with paperwork this morning. Yes indeed, I am still disabled, I would be bothered were I not. Yes indeed I would still like to receive the handy dandy financial support that allows me to keep living in my lovely apartment and keeps Mackers in kitty food. I will only accept these services until I no longer need them; then I will happily pay taxes to ensure that other people can also benefit.

Changing billing addresses- my paratransit bills should not be showing up at Lady's mom's house, that just makes things weird. (Also, I think it costs more in manpower, postage and ink to send someone a bill for 6.75, but what do I know)

I am not going back to school this fall, I am instead figuring out health and documentation and surgery to reapply for funding in January. Next appointment with the surgeon is Oct. 12. I'm really going to push hard to get things scheduled, if they aren't by then.

Lady is in school, and thriving, and maybe will post on her blog soon to tell you all about it.

I'm trying out a role as a Girl Guide leader this fall, so good wishes are appreciated. I'm excited about it right now, and we'll see what it brings.

I'm saving change in a bottle to go to Orlando.

I'm also standing in a wedding in two weeks and don't have a dress yet- Breathe in and out, it'll happen.

Think that's most of it for now, except for the fact that they sent a bedbug sniffing dog in here the other day as a "spot check" and I think Spot was more interested in Mackers than he was in anything of the bug persuasion.

There's nothing terribly exciting in this blog post, but that's the state of things right now.

Ta for now,

Ashley

Bath Lift: Success!

2010-08-10T02:06:00.001-02:30

So in this post, I said that the OT was providing me with many yummy things.

In the past week, two of these have come in. One is my walker, which looks an awful lot like this.

Walking is painful and energy consuming for me, so I don't choose to do it often. However, I sometimes get the urge. I put on more weight than I was comfortable with when I broke my foot in December, and this metal monster is helping me get active and hopefully get some of it back off. I still have to be really careful and not push myself, because foot is heading for surgery soon and still has some pretty major wonky structure, but it's something!

However, today the thing that I was perhaps the most excited about showed up: My bath lift.

Seriously, where have these things been all my life? They even sell them on Amazon! See?

Minivator Bath Bliss 311 Lift

However, mine is not sold on Amazon, and is called the Aquatec Orca. Had my first bath in it tonight and it was *bliss*- Sheer bliss.

Now, to get some new wheels under my butt, once the walker has made it a bit smaller, and I'll be set for more awesomeness.

Things I Never Thought I'd Say

2010-08-09T03:45:00.000-02:30

....while browsing a cousin's FB pics.

"There's my [bio] Father, traumatizing some random baby [on Facebook]. No, I don't know whose."

Two Posts in a Day! But I had to share this cake...

2010-08-03T22:57:00.000-02:30

In reference to the video in my last post, Lady went out after a dreary start to the day and purchased:

Okay, so it's 5 30 AM and I can't sleep.

2010-08-03T05:40:00.000-02:30

I know there are serious things going on for many of you, so consider this little infusion of cute on me:

Family Funnies

2010-08-01T01:45:00.000-02:30

So I was in the line at a very famous "mart" today with my Mom. I had borrowed one of their courtesy chairs so I was below Mom as we waited.

Suddenly, in a tone of horror, she demanded, "Is that *something in your hair*?"

"Yes, Mom." I said, very quietly. "Grey."

I do not have, but I do have

2010-07-28T23:04:00.000-02:30

I do not have a job.

I do not have my health, right now.

But I do have love. I'm rich in love. Love from Lady, love from Mackers, love from my blogger folks...

And that's what really matters.

Job Interviews and Audiobooks

2010-07-16T02:31:00.000-02:30

(Full disclosure: I have joined the Amazon Associate's Program, but I promise to only link to books I have read, and have enjoyed, when I would have already posted about them. If anyone has a problem with that, drop me a line at ashley writer at gmail dot com, and I'll be happy to no longer participate. You all come first!)

So I'm still waiting on surgery.... Which led to the rash decision to tempt fate and apply for a 6 month internship with The Learning Disabilities Association of Newfoundland and Labrador.

I'm not intending to *not* have surgery, I'll push it to January if I get the job, if not I'll keep on waiting, waiting waiting.

I have experience in all the areas listed in the job ad, but I felt like I was rambly in the interview. One of the criteria is that you had to be a person with a disability to recieve the grant funding, and while I do, I do not have a learning disability, so if someone else with the same credentials, or who maybe wasn't so rambly who also has a learning disability should be hired instead of me.

I'm hoping.

Am also having a hard time reading these days- the clingfilm burn out seems to have put over my mind is still there. But I'm digging Shut Up, I'm Talking: And Other Diplomacy Lessons I Learned in the Israeli Government--A Memoir, so much that it has me giggling out loud, and also listening to Angela's Ashes: A Memoir, and after that, I have Tis Unabridged: A Memoir, ready to go.

That's about all I have here at Chez Rolladyke.

Until next time!

Love

Me

Not the 100th post, and not 100 things.

2010-07-08T21:42:00.007-02:30

So I was hoping that my 100th post would be my surgery date, because I'm a little bit nerdy like that, but I'm still waiting and my blogging fingers are itchy. Also, I didn't realise that Blogger counts "drafts" among your number of posts, so after some cleaning up, this is actually post 84.

Either way, I got the idea to do a 100 Things post...

So, without further ado, for my I thought it wa my 100th post, 100 things about me that you may or may not know already.

1. I was raised by my bioMom, but she did have an offer from one of her older brothers to take me and raise me as his own child. I would have been raised in a 2 parent household as a devout Roman Catholic. I sometimes wonder what that would have been like.

2. I did go to a Catholic school from grades K-7 because all schools in Newfoundland were denominational until 1999. I don't necessarily think this would have been a bad trend to continue.

3. I was always told about my disablity in age-appropriate language from the time I was 2. I think this has had a huge impact on me.

4. I believe in God, and energy, and reciprocity, and light, and love, and things unseen. I don't know what that makes me.

5. I have seen demons.

6. I love to sing, but I don't think I'm any good.

7. I love to write fiction, but I don't think I'm any good at that either.

8. I may not be able to finish university, now or ever.

9. I'm starting to think that's okay. Not necessarily desirable, but not world ending either.

10. I met the love of my life in a comic book shop

11. I drink tea. Good tea.

12. The person who was most surprised that I was a lesbian was probably me.

13. After 13 years, I still think the surgical scars from my most complex operation are really ugly

14 I don't like the colour purple. Never did.

15. I tend to catch on to trends late, and stop liking things like TV shows if they become too popular.

16. I had a lot of pets when I was little, but my bio father always gave them away.

17. It pleases me to no small end that Mackers is *my* cat and that no one will be giving him away.

18. The pet thing is only one of the many reasons I am still violently angry at my bio dad.

19. I completely switched sides in the recent divorce when I found out more information. It makes me feel like a turncoat, deep down.

20. My sister is my full biological sibling, but we don't get along.

21. I'm really excited to see who she'll become when she stops trying to fit into a mold.

22. My best friend (aside from the incredible Lady) lives in GA. And always has. I met her online.

23. My grandmother helps me pay bills.

24. I *hate* being on government funding

25 I don't know what to be when I grow up

26. I think this is because I missed out on a lot of kid experiences

27. I really really want to be able to buy toys for younger kids, and play with them myself.

28. It irks me that if one of you posted this about your radlings I'd tell you to go ahead and buy the toys!

29. I do not have any problem going to Build a Bear, however

30. I am entirely too pleased to have inherited the family Wii. My "share" of the divorce, I guess.

31. I'm saving change in an empty two litre Coke bottle

32. I'm actually trying to cut down on my Coke consumption

33. Some weeks it works, some weeks it doesn't. I try not to let it make me crazy.

34. I'm having more trouble coming up with things than I thought I would.

...So I'm going to toss this open for comments, questions, and rotten fruit. What else do inquiring minds want to know?

Surgical Holding Pattern

2010-06-27T22:49:00.003-02:30

Waiting. Im not very good at it, but it's what I've been doing since my last post.

Although the fabulous Dr Rock put me on the "kind of urgent" list for the fixing of the ankle which now has decided to go even *more* sideways, it hasn't yet come to pass, which means I can not search for a summer job, or even buy shoes.

How am I passing the time? Plastic canvas crafts, playing with the fantastic Mr. Mackers, blog reading...

Keep hanging in there, folks, you're fabulous.

XOXO

Ashley

Blogging about Blogging

2010-05-26T05:03:00.004-02:30

First of all- I'm creeping up there on 100 posts! I'll have to think about something fun to do for post 100. (This is post 98)

Second of all, I set some gears in motion yesterday for surgery on my foot, mentioned here, here, here, and here in chronological order. Looks like it will be soon, but not a lot has panned out on the job front right now, and my surgeon is great, so I have to believe that this is the right time.

*Given* that surgery will be soon (this is my 7th or 8th, so there's not so much a fear of the unknown as the fear of the "Oh, not this again...") and given that my last serious surgery was in 2000 (last surgery of any sort was in 2006) I have a tool at my disposal this time that I didn't before: Blogging!!

Is anyone interested in me blogging through this? Is anyone *opposed* to me blogging through this? No gory pictures, I promise. In fact, no pictures at all of me in hospital, I don't want them, and neither do you.

I never intended to become a "medblogger" per se, but writing is amazing therapy... It's not worth losing my readers, though!

On Children's Programming

2010-05-25T06:04:00.003-02:30

Disclaimer: I am not a Mom. Unless we count Mackers.

But honestly, the downturn in children's TV since *I* was small kind of freaks me out. When I was a kid, you could pretty well turn on Family Channel with no worries about what you might see. You might see

Katie and Orbie

Maya the Bee

or Madeline, or an assortment of classic Disney.

On Friday nights there was the incredible lineup of TGIF, which when I was a kid, consisted of Boy Meets World, Family Matters, Full House, Step By Step, and Sabrina the Teenage Witch.

I remember these shows tackling some tough issues: Fitting in, dating, step-families, even child abuse and eating disorders (Thanks, Full House!)

I do not remember any of these characters saying *anything* of the likes of the snarky, irritable, constantly hormonal "tweens" such as Hannah Bratana (I think Corey used that term first?) or Zach and Cody or the blended famly on Life With Derek....

I couldn't sleep last night, so Lady and I were flicking through channels. Family's broadcast day currently opens with my classic favourite, Katie and Orbie. Before it, there was one of the "tween" shows listed above. As we listened to the dialogue, I turned to Lady and said,

"This is why all the kids sound like this!!"

Now, I know that's not the *only* reason, but it made me think.

Amazing, Amazing, Amazing OT Visit!!

2010-05-12T16:13:00.004-02:30

I have the best OT in the entire world. Personable, Irish, incredibly sensible.

I'm getting a bath lift on trial, so I can actually *soak in the bathtub* again, people... This may be slightly more exciting than Tiruba Tuba's towel bar...! Maybe!

I'm getting the kind of walker I had as a little kid, seen here. (Yeah, clunky, but the most stable thing I ever walked in, and I'm going to start walking for *me* again, just like my friend Corey!)

And, new chair, because whoever measured and fit my first one was clearly asleep at the wheel, and walking is going to become my thing I do for me- It's not practical for me to walk everywhere.

But aside from all the snazzy stuff that will be coming in to my home, and probaly even more important... I felt listened to and appreciated and supported. That's what all of us want from our special needs professionals!

Random Funnies

2010-05-01T21:56:00.003-02:30

So I'm feeling much better after that second ER run, currently relaxing in front of the TV with Mackers and America's Funniest Home Videos, which got me thinking about kid logic, and some of the funny things little folks do. I did my own share of funny things, but there's one incident in particular that I can recall with absolute clarity. I even remember the "kid logic" behind this one, and I thought I would blog it for posterity.

I was perhaps seven, and had a porcelain tea set. My Mom was away from home this particular evening so I was in the care of a babysitter. The babysitter was unfamiliar, so I was content to stay in my room with my tea set and books and my dolls.

I called out to the babysitter to ask if I could have some water for my pretend tea, and was told no, water would make a mess because I could spill it. This made sense to Little Me. Water, after all, was wet, so I looked around my room for an alternative.

Suddenly, I had it. Baby Powder! It was sitting right on top of my dresser, I could pour it, and it wasn't wet!

Turns out, it *was* still messy... Luckily, Mom was too busy laughing to be upset, when she did come home.

No deep thoughts today, folks.

Keep hanging in there

Ashley

On homemade magic bags and shots

2010-04-26T06:34:00.002-02:30

First of all this is my magic bag, hand made by my fabulous other half.

Isn't it pretty?

Second of all, this pain won't quit! Another run to ER about 24 hours ago, this one ending with a firm suggestion to call my neurosurgeon (Like I hadn't thought of that already!) It's much worse than last year, and I was sobbing between double doses of P*er*co*cet. I don't like being on meds that strong, Sam I am. I like it even worse when they don't work.

So anyway, chat with the doc, again, have my neurological function checked, again, and this time get a scrip for muscle relaxants on top of the Perc and a shot of m*o*r*p*h*i*n*e.

That seemed to break the cycle, and after coming home and sleeping for 8 hours, topping up with another perc as directed, and sleeping some more, I felt well enough to get up and get a shower.

So here's to meds that work... at least a little better.

I am so glad I don't have to worry about the cost of my health care!

PS: Honest nurses are great. When Paulette the RN came back with my shot, she said, "Okay, I have your medication here. It's a needle, it's morph, and it stings like a bugger. Once it kicks in, it's good. You won't mind."

She was right. On all counts.

A Day in the Life

2010-04-24T03:37:00.003-02:30

Corey, over at Watching the Waters, asked what a day in the life was like.... I keep waiting to have an interesting day :P

Am in a lot of pain right now from a bulging disc at S 5 L1 which is known as sciatica. I'm sure all of you probably knew that anyway. Sciatica plus Cerebral Palsy is no fun. I've been dealing with it off and on since Fall 2008, and when it flares it flares *badly*. All of this is just meant to say that I took a spin to the local ER the other day because I had outgrown my pain control regimen and am now on something different that has me a little loopy.

So there's not much on the go in the life here, so I thought I would do a day in the life of Mackers instead.

Wake up, jump on Dad, (Lady) make all kinds of noise so Dad knows I'm hungry. I bite Dad's shins and follow him upstairs so he can fill my bowl with Crunchy food for cats and make sure my fountain for cats is full. Cats drink filtered water in this house. Then I eat and drink, and get bored, so I check my window for birds and bicycles before making more noise so my people will get up.

Mom might need a shower, and I have to supervise if she needs one. I go in the bathroom and meow at the tub and check it all out. I stay on her shower chair until the water starts- Then it is too wet for cats. Then I chase the people upstairs for the day. Dad might give Mom her medicine- Mom has a big ow right now- and Mom might lie down. I might lie down with Mom, but I also might check my window a lot and sleep in my cardboard box. I do not *need* to sleep in a cardboard box, I just like to pretend.

If Mom gets up to go in the bathroom I need to follow her, and if Dad goes downstairs I need to follow him because he might be doing something for cats.

It's very hard to be me, you know. No wonder I need so many naps.

Revisiting an Oldie but a Goodie

2010-04-19T22:36:00.002-02:30

So some of you may remember this post, which was a brief foray into my other passion, writing. I love to write fiction, and some tell me that I do it well, but the important thing is I love it, so I would probably do it forever for free.

I came across this article today, which some of you may enjoy reading, which revisits my point. It's very important for kids- especially "different" kids- to find mirrors of themselves in literature, but it's also *hard* for our different kids.

Just food for thought. I'm doing fine, kitty is big and handome and that's really all I have to say. Big hugs.

Ashley

Okay...so...Corey said....

2010-04-11T22:49:00.002-02:30

That I don't blog enough. So blog I will...

Hair – growing

Your Mother – young

Your Father – absent

Fav Food – french fries, and it shows...Oh well

Dream Last Night – Don't remember

Fav Drink – Organic Irish breakfast tea

What room are you in? – friend's living room

Hobby – blog

Fear – abandonment

Where were you last night? – home

Something that you aren’t – graceful

Muffins – Oatmeal

Wish List Item – job

Where you grew up – St. John's NL

What you are wearing –sweats

Your Pet – one cat, the infamous Mackers

Friends – as family

Something you’re not wearing – shoes

Fav Store – Walmart. Seriously. For the student on a dime?

Fav Color – pink

Last time you laughed – today

Your Best Friend – Tayley

Best Place you go over and over – Blockbuster Video

Person who you email regularly – blogger folks

Fav Place to Eat – Ches' Fish and Chips- Newfoundland exclusive :)

Now I tag…

Tuba

Tayley

Linda

And anyone else who wants to play

As for my future blogging- Tell me.

What do inquiring minds want to know?

Further foot info, especially for Linda B. but also for anyone else who might be interested.

2010-03-21T04:37:00.003-02:30

I fixed my blog colours so that links will show up in green now. There are a few links on the last post to explain some of the medical-ese, but visual aids can be fun too!

Basically, the triple fusion I talked about would salvage my left foot. The doctor would go in and place screws and plates in the three major joints. Sounds drastic, and it is, but I had one done 10 years ago on the right side and its holding up great.

Why does my foot need to be salvaged? Well, the CP has twisted the bones and muscles in my foot (and elsewhere) all out of shape, so my foot, in repose, looks a little something like this :)

It looks painful, and it kind of is, especially when walking and especially since the break

In other, foot related news,

2010-03-20T19:35:00.004-02:30

I realised I didn't update anyone on the specialist visit I alluded to in this post.

Thank all things holy, I saw someone competent. I had a triple ankle fusion on the right foot, not the one I broke, back in early 2000. I was on the cusp between the recommended procedures, one for adults and one for children, so my pedes surgeon asked an adult surgeon to assist him. That surgeon, lets call him Dr. Rock, happened to be the one I saw in February.

He came in and said, "Your name looks familiar." I told him he had done my first fusion and he grinned, asking if I wanted a matching set. I told him I wasn't completely closed to the idea, but that no one seemed to be able to make up their mind whether or not I had broken the left foot, and although I could walk, it was extremely painful.

He furrowed his brow and got Lady to take off my shoe and sock. Looking only, he said. "What do you think happened to your foot?"

"Avulsion fracture." I said readily, having done some research since the brush off in December.

"So it hurts here?" He asked, putting out one finger and finding the *exact* place where pain was at its worst.

"Exactly!" I said, relieved.

"Let me look at your X-rays," he said. "Avulsion fractures are common in CP."

(Keeping in mind that the X-rays he's referring to are the same ones everyone else has been looking at)

He came back in shaking his head in disbelief. "Yes," he said. "That's broken. It's on the side, so having it out of cast hasn't been detrimental to its healing... just painful for you. I'm so sorry."

I assured him that I didn't blame *him*, not in the least. We discussed casting it again, but decided against it for now. We will be looking to do a fusion in late May, early June so that I can heal properly and this won't happen again.

Frick, frick , frick... Breathing in and out, because it seems to be the only thing I can do right, lately.

2010-03-15T09:14:00.003-02:30

So okay. Big brain dump in the post the other day, and I really, really bigtime appreciate all the loves. But right now I'm kinda mad and need a safe place to jump up and down (figuratively, I mean, having never actually jumped up and down in my 24 years on the planet.)

I work with a fantastic, yet underfunded, organization. I do presentations for them. I occasionally get a stipend for doing said presentations. It's brilliant.

A week or so ago I went to meet with a second organization about doing a presentation tacked on to, or perhaps in to, their Paralympic events. So I was given two evening slots, told that they'd do some of the promotion for me, and that I was to do some on my own.

Now, I *did* do some on my own, but I've also had the world coming down about my freaking ears. So I thought "Okay, I'll just go with organization #2s kids, it'll be grand, and get my foot in the door with them."

Not *once* did someone from Org. 2. check in with me to see how things were going or to tell me that registration for my first talk (tonight) was going *infintessimally* slow. (I don't even know if that's spelled right, but it looks...kind of right.

As they were handling, on their end, registration for this event, I feel that someone could have at least dropped me an e-mail, though I admit that I could have done the same.

Just now, I called to be all responsible and get a headcount.

I've got 1 person. 1. Maybe.

I acknowledge that I didn't have a whole lot of success in promoting this, but I also got no help or contact. And Org 2 was the one I was hoping to work for full time in the very near future!

There's got to be a break in these clouds somewhere. There's just got to be....

I'm having a hard time being nice to myself right now

2010-03-14T01:59:00.002-02:30

Long talk with my (favourite) professor yesterday, and we decided that a "strategic withdrawl" from this semester, and from academia in general, is a good thing right now. I just can't do it. I'm smart (I swear) but my brain is covered in some kind of clingfilm. I just... I can't absorb academics right now.

I bombed at Public Speaking class- and that's, essentially, what I *do* for a living, and what I *want* to do for a living, so there went *that* class before I turned myself altogether, and then this month-long stint of hiding in the house, hiding from everything, and I just can't come back from that right now- I could promise to, but I wouldn't be able to follow through.

So now I'm sitting back and looking at my options- I've applied for some jobs, I'm using my networks. I might even be able to work in disability advocacy, which is where my heart is right now. I won't lose the apartment, that's secure, and I just... I need some time to find myself. I haven't told my Mom, or anyone, yet really, except Lady.

That's so hard. I wish I could explain to you how smart I used to be. When I was little, school was a *breeze*- I was literally smarter, by 4 or 5 grade levels than everyone else . Whatever was going on at home, abuse, the fighting, the locked doors and the days when Mom would come in and take me in her arms, holding me tighter than I needed to hold her, ever, and tell me that *everyone* was having a day off from school today and we'd curl up in the big bed because my bio dad had hurt her worse that day than she could hide with make up and a smile. All of that didn't matter- once I was in my desk, I was in *the zone* and I was top of the class, every year, for 13 years.

First two years of university were easy too, but I was *so* young. I was 18 years old with no real idea of who I was in the world, or what I wanted to be.

And now, now I'm just going through the motions and the anxiety is crushing and those last 10 courses seem like a long, tortuous road that I'm never going to find the end of, and right now I just can't.

But everyone else expects me to be *so* smart.

And it's just not enough anymore.

Snazzy things

2010-03-07T02:19:00.002-03:30

March is still tough, but I think it's tough on everyone!

Thanks to the incomparable Lady for my very girlie blog makeover- I *love* pink!

Mackers has his own album on Facebook now so I'm hoping the link works here!

March is kicking my butt

2010-03-02T23:07:00.001-03:30

But it's only so long, right?

What a difference a year makes- Or, it's my birthday and I'll cry if I want to

2010-02-10T11:24:00.002-03:30

It's my birthday, and I am 24. This time last year, I blogged here about my Mom and my Nan and some of the odds that were stacked against me as a tiny kid who, thankfully, did not become a RADish kid, but could have.

Of course, to find this post, I scrolled back through my blog- WHAT a year it's been, from vacations and build a bears to failures and divorces and a new apartment. Sobering.

But this wasn't meant to be a downer post, I'm just... thinking. But the past year has brought joys too- Lady and I are living together. Mackers is here with us, and wanted, and growing like *crazy* (Big snip next week, don't tell him) There's just something about birthdays, I guess, that makes you look behind you and ahead of you.

As promised, some Mackers pictures

2010-02-03T17:36:00.006-03:30

Big as he is, we still spend a lot of time like this

This is Mack now. He is much bigger, and believes this box to be his. The dropcloth from painting shelves? Also his.

Academic Expungement and Mothers Out Law

2010-01-28T16:42:00.004-03:30

I know I've been quiet on the blog front lately. Mea culpa.

Have started another term at school, occasionally to my crushing dread, but I'm working on it. Only two courses with my favourite professor, who is retiring in April, and that's it.

Was speaking with the advisor for students with disabilities today and she noted that my transcript has a lot of.....blips (read: craters, with zeros) and that she thought I would be able to get most of them wiped, given the events of the last couple of years. I don't know if I can do that. I don't know if I am worth that. I'll work on it.

Unrelated, but related to the title, Lady's Mom mentioned wanting to drop by this weekend. Both of us had the same, resounding "EWWWWWWWWWWWWWWWWWWW" reaction. My mom? When my Mom drops by she brings KFC and chats for a bit. Lady's Mom will spend the visit prowling through the house critisizing how we've got things laid out and whether we have healthy groceries in the cabinets. Not interested, thank you very much.

Well, that's it for now.

A.

PS: I will provide new Mackers pictures, and soon :) He's getting big, getting his big boy teeth now, too!

More Newfoundlanders step forward for Haiti

2010-01-17T18:24:00.003-03:30

With everyone's mind still on the crisis in Haiti, I really hope that my bloggy-friends will pass this link around. A local artist has done a painting called "Kisses for Haiti" and is donating all proceeds from her ebay action to Doctors Without Borders/MSF for Haiti Relief.

I don't expect any of you to *buy* the painting just because of what it's for, I know money is tight, but it might catch someone's fancy- one of your other readers, someone with a connection to Newfoundland, anything.

For those of you who might not get the reference, the candy in the picture is called a "Purity Kiss"- It's a Newfoundland specific candy that tastes like molasses or other flavours.

News story

Ebay Link

I am so proud to live here

2010-01-14T15:05:00.004-03:30

The crisis in Haiti is on most people's minds here in the Blogosphere. I am proud to call the Mama of quite a few Hatian Sensations, the fabulous Corey Waters, among my virtual friends.

I live in a small Canadian province, one that had a reputation for *many* years as being a "Have-Not" province.

Well, I'm proud to be living in this province today! Our premier announced today that our province was donating one million dollars to the Haiti relief effort!

Thank you so much for the support!

2010-01-07T17:43:00.003-03:30

Things are looking brighter now and I have no doubt that it's due in part to the positive thoughts I got, and am getting, from all of you.

Lady posted here *warning: Some frustrated-venty language* about something I'm sure you're all familiar with: Caregiver burnout. Some other stuff in her blog may not be to your taste (or maybe it is, I've no idea) but I know she appreciates all of you and would love any recharging tips you could sling her way from dealing with your own tough kiddos.

Gratefully

Ashley

Prayers for Peace and Strength please

2010-01-06T18:36:00.001-03:30

All I can say right now.

Lovingly

Ashley

Healing, I think...

2009-12-21T22:38:00.003-03:30

Wow, what a difference two weeks makes... But not really.

Basically what I forgot to update about was the specialist deciding that he could not tell whether or not my foot was broken, but that "something clinically significant" had happened to it. It was black and painful, too painful to even stand on until Saturday. But, with my CP and other issues, no one knew how to read the Xray!

So I spent the last 2 weeks in a cast and went back to the specialist again- Still a lot of pain, still swelling, still from a clinical exam they could tell me where the fracture *should* be... but it wasn't there.

So, they took me out of the cast to let me have a bit more freedom of movement, told me to let pain be my guide, and referred me on to yet another specialist in Feburary.

Otherwise, though, things are going well here. Mackers saw the vet for the second time on Saturday, he has doubled his adoption weight (0.8- 1.6 kilograms) had his second booster and tested negative for the feline leukemia virus!

I wasn't able to get out to get his pictures done with Santa as they were being done for pets the weekend I fell, so here's our best attempt

Happy Holidays from Ashley, Lady, and Mackers!!

Basic Equations

2009-12-07T23:32:00.002-03:30

I am entirely certain that this is something all of you already understand, but here goes.

I finally think I "get" what it is that happens to those of us with multiple issues when *one* little thing goes wrong, whether it's an hour ahead or back in Daylight Savings/Daylight time, or in my case....

A broken foot on top of CP.

The fabulous Ms. Tiruba Tuba, who you all know very well, has a habit of saying CP is a Pain In The A... I usually agree, now I *more* than agree!

I've gone from "not walking so great" to "now I can't walk at all," and the pain has thrown my anxiety for loo loo loop!

Anything chronic + anything new= PITA!!!!!!!!!!!!

Hi, Everyone, my name is Mackers

2009-11-18T18:07:00.002-03:30

Mommy A says I am very handsome.

I just came from the Humane Society today.

I did not like the car ride very much, and cried the whole way home in my new carrier. Once we were out of the scary car, though, and Mommy L put my litter pan down I was in the mood to explore!

Apparently I am not allowed behind the TV- "Electricity land" says Mommy L.

I am not allowed behind the refrigerator, either.

I *am* allowed on laps and I like to explore the different parts of my new home. I do not like the fan in the upstairs bathroom. I do like treats- They come from a special bag which I tried to put on my head. It scared me and I ran away to hide under Mommy A's rocking chair. She likes a blanket on her lap a lot, and it makes a nice tent for me.

I think I like these mommies- They sing silly songs. Mommy A sang something about a "Gotcha Day."

Maybe I'll post more often, but my blanket looks cozy, so that's enough for one day. After all, I'm only 9 weeks old!

2009-11-18T11:49:00.001-03:30

MACBETH IS COMING HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Triple A- Awards, Afebrile, and Adoption

2009-11-12T19:57:00.004-03:30

First of all, can anyone tell me how you get your awards on your sidebar? I finally have time to pick mine up, but I want them to look *reeeeeeeeeeeeeeeealy* nice, like the ones you have.

Second of all, the H1N1 bug seems to be heading off quite nicely- All that's left is a tickling cough and general malaise, so I'll take that over fevers and body aches severe enough to make me cry, a cough that bounced me so much I usually got *air* between myself and the mattress and congestion.

I'm feeling down, but that's no surprise with the parents' divorce clicking merrily away and all the excitement of moving dying down. Don't get me wrong- Living here is really nice. I have the chance to set accessibility up the way I want it, Lady and I cook the foods we want, that kind of thing. But it's something I was looking forward to for quite some time, it didn't go at all the way I expected, and now it's done. So am feeling a bit let down.

Which brings me to the third A in my title- Adoption. No, not of a kiddo, though I'd love to do that someday. Right now we're waiting on approval to adopt a little black kitten from the local Humane Society. If we can't, I'm sure he'll go to a great home, but I'm hoping to get him into *my* home and change his name from "Pop" to "MacBeth"- Mackers for short.

Good kitty vibes are appreciated.

All Moved In

2009-11-08T20:32:00.002-03:30

So I'm feeling much better, physically anyway. There's just a cough remaining from that nasty H1N1.

I went by my parents' house today, to get a few things.

My parents are considering divorce.

This is terrible

Okay...so...

2009-11-04T23:32:00.002-03:30

Moved into the new apartment Friday.

Family stuff is still not bloggable- I'm sure I'll need to write through this eventually, and I know you'll all be there to listen when I do.

Right now, we're settling in here okay, although a nasty case of H1N1 (yup, been tested 'cause I'm high risk) moved in right along with us, and necessitated an ambulance ride at midnight on Monday. I got checked out and all is as okay as it's going to be.

Still reading along with all of you as I go through tissues like it's going out of style.

2009-10-29T23:29:00.001-02:30

I have some awards to pick up and bestow... I haven't forgotten.

My Mom's behaviour has truly deteriorated. It's not bloggable... I don't want to relive all of it.

Holding on, holding in, trying to keep breathing

Too True Tuesday- The SHOES!

2009-10-13T17:10:00.003-02:30

I was so excited that I would have something for this week's Too True Tuesday! In fact, the moment I told Lady the topic she said "You have to write about the shoes!"

Above, you see one of The Shoes- Black leather, zipper in the side, Dr. Scholl's insole I think this is the right shoe. It's on my pillow for its modeling debut. This is a comfortable shoe, albeit *very* plain.

I kid you not, I have had more than half a dozen pairs of these *identical* shoes bought for me by an Aunt I shall call T.

T and I were very close as I was growing up- She was my Other Mother. But I think in her mind I never got any older than 12. Anyway, she still does quite a bit for me.... But for a while we almost had a falling out because of The Shoes.

I was 18. Starting University. And T bought me Pair 1 of the shoes. Yay. They weren't for any special occasion other than the start of school. And I liked them.

Then I got an identical pair 3 months later for Christmas. Okay... Thanks T

Then I got a pair for my birthday, 6 weeks after Christmas....

Then I got a pair for starting my second year of University... I could now *interchange* these shoes.

I said to T. "I really appreciate the shoes, but I have enough pairs now, thank you!"

I got a movie for Christmas....

And then? For my birthday? You guessed it. Shoes.

THOSE I returned to the Mart of Walls.

(The pair featured here is the *newest* pair, given to me in July by, you guessed it, T. But at least they weren't for any occasion!)

Doing my bit

2009-10-09T00:11:00.000-02:30

Family Needed

Leave your judement at the door...

Wishing for peace

A Soft Landing

2009-10-08T23:56:00.002-02:30

So my room is still clean and the trauma is settling. Communication lines, blasted open by my abrupt departure, have stayed open. It's not perfect- but we're trying.

3 weeks til I get the keys- HUGE!!!

Mom is panicking about every 3 days, my stepdad calmly asks her "Aren't you proud of Ashley? This is a big step." I truly believe that we'll get there.

Any tips from you lovely folks about independent living? What do you wish you'd known when you moved out?

Dia- I really enjoyed the book that Tortuga did his report on when I was younger. When I was Corazon's age, I read Anne of Green Gables and Emily of New Moon. She might like them, the language is really rich.

Think that's all I have to say right now. Still reading all of you, every day.

Mom's clean when they're stressed? I seriously did not know this

2009-09-25T21:32:00.002-02:30

So....

When I came home from my week at my friend's, I found my room spotless, bed made with love. My Mom did it.

I can only think of a few times since age 16 when my Mom has made my bed.... Usually after my surgeries when I'm too sick to think much about it.

In a way, I hate the way I did things last week- Just taking off like that. But I couldn't think of any other way, and it's all working out.... I hate that I hurt her, but hopefully with some space some healing can take place.

Security deposit paid on the apartment. They can't take it away now :)

Am still blocked on the Sensory Integration post ideas. Does anyone have any questions I could use as jump off points?

Also... I know this is a sensitive issue but I thought I might ask....

You all have such great advice...

I recently recieved confirmation that sexual abuse I remembered in my childhood did happen. I don't want to press charges- I don't even know what the statute of limitations would be, and I don't *want* to know...

But I've been on overdrive. Rapid heartbeat for days, sensory integration things so bad I can't brush my teeth (I *wish* I could....)

Mom desperately wants me to be able to forget about it... "Put it in a box" she said....

I don't think I can without....someting.

So first, an apology

2009-09-22T21:32:00.002-02:30

My life exploded last week.

Linda B, if you still want that info, please let me know

Basically, things with my Mom came to a head but I actually went to the social workers this time. After finally telling them everything, the good and the bad (because WOW have I made some mistakes) they were more than happy to help me on the path to independent living.

So, Lady and I will be moving into our own apartment on November 1! (Unless they have to put down new carpet, which I kind of hope they don't because then I can't have a cat)

Also, I think with some distance (I've been sleeping on a friends' floor) my Mom has done some thinking. From telling me I can't have any of my belongings (including my cheques) she's gone to "I understand; Come home, we'll go shopping for towels."

Coming up next.... Sensory Integration post

My Take On Sensory Integration Disorder?

2009-09-11T10:30:00.003-02:30

Hi all of you out in bloggyland!

I've been trying to think of something interesting to post lately, and then I realised that most of you with special-needs kids deal with sensory integration issues. Does anyone want to hear my take on my sensory stuff? Would a description help? Any questions you'd love to ask your kids but that they have trouble articulating that I might be able to shed some light on?

Well, at least It's Bloggable!

2009-09-04T00:21:00.004-02:30

So I'm sitting back and enjoying my vacation and waiting for your thoughtful questions to roll in- but no pressure :)

A situation occured tonight though, and its only redeeming feature was that it was blog fodder.

After Callie, our lovely hostess, and her partner Candace (synonyms to to preserve their identities as secret agents) recommended a local pub pretty highly, that's where the four of us (Lady, the C's and I) decided to eat for dinner.

Big mistake.

Not only had the menu changed (portions shrank, food that had not been spicy was spicy) but the waitress either had some problem with same-sex couples, or brunettes in wheelchairs. I'm thinking it may have been the latter, as neither Lady and I nor the C's were playing tonsil hockey or had flashing rainbows over our heads.

She was rude and abrupt from the moment we sat down.

"How're you splitting the bills?"

"Whaddaya want to eat?"

"Whaddaya want me to do?"

We were trying to be charitable about it though. Maybe she didn't want to work today. Maybe she's got big stuff going on at home. Maybe her shoes are too tight.

Until we decided to watch her interactions with the other 3 tables in her section. I wish I was joking when I said that the 2 seated before us and the 1 seated after us were treated to spectacular service. She laughed and joked, made recommendations on the new menu (all of our attempts to engage her were met with icy stares) and provided prompt attention.

Eventually, between the blatant...whatever she was doing, and the subpar food we asked to have our most-offending dishes removed from our bills (drinks and appetizers were great; we paid for those) This she did with more rudeness... Then we called a manager over and calmly detailed the lack of service. His eyes just got bigger and bigger as we talked about things she had said or things she had failed to do (Like handing Candace her dinner plate and walking away, leaving the empty appetizer dish on the table and her nowhere to lay her hot food!)

Callie said that she had been a regular customer and that she would never have expected such poor service.

The manager was appropriately apologetic and discounted our amended bills, but Waitress-zilla's death glares followed us out. Left me wondering- Something I said? No. More like something I am...

Positive vacation post tomorrow- I promise!

Updating before Vacation!

2009-09-01T16:07:00.004-02:30

So I'm off on vacation in about 12 hours, spending some time with some good friends in another province before school starts on September 9.

Am back on my meds- day 4- and feeling a bit like I'm back in my own head.

I also blog to provide another perspective, so... Any questions? Anything you all would particularly *like* my perspective on? Let me know!

Oh! And just so my cup will runneth over with joy today...

FAERIE MAMA'S back!

Tired

2009-08-24T11:21:00.002-02:30

I can't tell you all how many times a day I check my Blogger and Wordpress blogs and mean to update...

It just never seems to quite work out that way.

Work is going really well, school is sorted out as much as it can be for now, Lady and I are rapidly approaching our 4th Anniversary.

I'm also really tired. I'm off my medication for the summer (Insurance, not my choice) And some pretty big stuff has gone down with the family... I get to start meds next week though, and I'm still happily reading and following along with all of you.

Ashley

Too True Tuesday!

2009-08-11T09:03:00.002-02:30

I'm so excited to be participating in my first Too True Tuesday!

Well, here goes... the thing that is not necessarily bad about me, but is strange but true.

I didn't eat any meat of any sort until I was 17 due to a lot of anxiety/sensory things... but this isn't the embarrassing part- The embarrassing part is that now that I *will* eat meat, I'm catching up on the McDonald's Happy Meals I missed as a kid... and these I just discovered this summer!

I know! I know! McDonald's is horrible for you, and chicken nuggets are made of meat slurry and all the rest... but there's a little box... and a toy... and it's *just* the right size for a lunch or snack....

So yes- that's me- too true. University student, newly-made Happy Meal consumer...

Hey everybody... Come meet my other friend Lisa :)

2009-07-28T19:53:00.006-02:30

First of all- A recent picture. Lady and myself alll dolled up for a wedding. I'm the one in the curls ;)

Second of all- an introduction :)

As grateful as I am to have our fabulous Lisa in my life, I want to introduce you all to my other, knows me in real life Lisa, over at Diary of a Mad Comedienne. She's a fantastic Mom to some wonderful kiddos and an amazing voice for social justice.

But more importantly, she's *funny!* Lisa has a gift for comedy and has recently made her big break. Her humour is occasionally adult, but she's delighted to meet my Bloggy friends and would love to take a crack at adding a little humour to your days.

FINALLY!!!!!!!!!!!

2009-07-17T11:24:00.002-02:30

Can you tell that I'm excited? This is day 2....count 'em, T-W-O of me being out of pain. That makes a happy Rolladyke! And a happy Rolladyke tends to post on her blog!

I have PT/Massage on Monday to see if we can get this pain *kept* down this time. Am trying to remind myself that it won't be like when I was little; No big gym with kids all around it on mats working with their individual PTs, no "punishments" when I screamed or cried from the pain... Sometimes the things that get done to kiddos with physical disabilities are downright scary! Necessary, probably... but scary.

(I don't mean to castigate any of the Awesome Moms who read here who have to take their kiddos to PT and make them do therapies. I just had a particulary rough time. I'll elaborate in another post)

I wanted to post a thought I had.... but right now I think I'll just use this post to celebrate being out of pain!

YIPPEE

Light, love, and energy (because I have it to spare now)

Ashley

I'm still here...

2009-07-14T13:46:00.004-02:30

Still working away at filing

Still hurting like the dickens- This is now week 3 of the most *monster* flare I have ever had. Have alerted the docs, but there's not a whole lot they can do other than play around with my med dosing, which, I will confess to you, I had been doing already. The benefits and drawbacks of having done this before!

I have a wedding to attend on July 24, and will post pictures of Lady and myself in our finery....

Am at home again, but things, for the moment, appear to be going smoothly....

PS: To the Hoover Mom: It's coming along nicely :) And to a mailbox near you within the next...week? I hope?

Back on the Grid

2009-07-10T14:44:00.002-02:30

Took Rolladyke Rambles down for a few days- don't know why, just decided to.

Have still been reading along and commenting with all of you- You're an amazing bunch of folks!!

Summer is in full swing here- Temperatures in the mid to high 20s Celcius. Unfortunately, I'm actually *still* in a lot of pain, and it's getting worse.

Have an appointment on the 16 to see what we can see...

Wishing all of you happy, peaceful summer days

Ashley

I didn't realise it had been so long....

2009-07-01T22:31:00.002-02:30

I've started a summer job, Lady secured her first office job. My education funding is secure, and I'll be seeking counselling in the fall as well as tutoring. I do so dearly want to graduate.

I'm having a really bad pain flare which has lasted since Monday, June 22, and there's no end in sight. Lots of medicine. Just like work is lots of filing.

But things are brighter

Okay...

2009-06-16T22:09:00.000-02:30

So I tried to spend the week at home, and I just couldn't do it. Trooped back to Lady's bag and baggage- I sleep better here.

Am slowly beginning to sort out the mess and misery of school- I can do this. E-mailed an Aunt who told me I have handled so many things in my life with grace, courage and intelligence that it is understandable that I should stumble now and then.

Got some really good news today- I have been selected for the Summer position I interviewed for. I will be working in a provincial government department through a program that employs students with disabilities.

I miss my usual summer activity of the National Youth Exchange, but it's not going ahead this year. No funding.

I'm reading and smiling along with so many of you. Thank you all for being here for me.

After the lovely mention...

2009-06-14T19:07:00.000-02:30

from the invaluable Ms. Tuba, I thought I should update.

I am hanging in.

Friday was terrible. 4 hour crying jag, depersonalization, Lady getting angry with my Mom and me being out of A*tivan all made for the perfect storm of misery.

Surprisingly, Saturday dawned better. 12 hours of sleep which I desperately needed, safe in Lady's guestroom with her on 300 threadcount sheets. Sometimes all you need is a cuddle.

Spent some time with My and Ma (blog pseudonyms, okay? Okay) My is someone with whom I share a very special bond- He's 34 and doing an amazing job of living with CF, which is not a nice disease. His wife Ma is a young soul and has a great appreciation for all things from the Mickey Mouse Empire. Lady came too, we played some silly games on the Wii and I had a another long sleep on someone's guestbed. Why does everybody have nicer sheets than me?

Am at home now. Trying to store energy for the week ahead.

Thank you for all being here with and for me.

Cheers

Ashley

Crushed- If you're having a bad day, skip this post. Please

2009-06-10T15:11:00.000-02:30

If you're having a bad day, skip this post. Please.

I don't want to be responsible for hurting anyone else.

Things are bad right now- so bad it's hard to breathe.

I failed school in the winter term. I haven't been kicked out, and I do have a social worker who decides whether or not I get to keep my educational funding, so I might have been able to work something out there.

But my Mom has found out.

I failed school last winter too, and there was screaming and sobbing and accusations, and I thought about just walking off the edge of a cliff somewhere because it seemed like things would never get better.

They did. Slowly, with lots of setbacks along the way.

I really pulled it together in the Fall, passed 5 courses for the first time since 2006, and then crashed again this winter.

I could list the reasons why, and the reasons why I lied, but I could never tell my Mom- We just don't work like that. So all she's had to say is that I'm selfish, only think of my own interests, and that I have to tell my grandmother and my aunt, and my stepfather that I failed. She also told me that she bet I didn't get up in front of all the people at the hotel last week and tell *them* I failed- Well, no, I didn't. Why would I? It wasn't relevant to my presentation topic- I had to be professional, didn't I?

I don't feel like my mail should have been opened (the only way she found out) I don't feel like I should be made to "confess."

Last week was okay, I was house sitting. I went home for one lousy night (Sunday) and caught hell in the morning (Monday.)

I felt like I needed a break, desperately, so I e-mailed my mother and told her I wouldn't be home, I had some thinking to do, but I was safe. I went to Lady's. There's been no communication between us since. I'm afraid to, and she hasn't reached out. Not even to yell at me and insist that I come home.

Lady's Mom is beginning to get a bit surprised/fed up with my being there so much. Lady hasn't told her what's going on, because sometimes they're not the most understanding people. I can't blame her for that- I very *rarely* tell my parents what's going on. Even that I'm hungry.

I'm facing having to go home in about an hour, and my chest is so tight.

I had my first suicidal ideations 10 years ago. They've never gone away. I'm having them now, even though I won't act on them. I'm just wondering how I could do things so I could get the services I need, not hurt my body too much, and not upset the people I love too much.

The part of me that's a peer counselor knows how very, very bad that is, but the part of me that's sad and frightened and angry wonders why I don't just do it- Just enough to show them all the kind of pain I'm living with.

I won't. I'm likely too much of a coward too change the status quo like that. Or too sensible.

I'm stuck- and I can't get out. Hell, I can't even breathe.

I just had to share

2009-06-04T22:09:00.001-02:30

I got my first Standing Ovation today!!!

Had another presentation, similar to the keynote address a few posts back, and all of a sudden folks were on their feet!

On Normals... Again Or why I'm boycotting The Orphan

2009-05-31T23:40:00.000-02:30

Ranting ahead.

I am tired. I am absolutely sick and tired. I am absolutely sick and tired of anyone "different" having to be a villian, a hero, an inspiration, or a "There but for the Grace of G-d go I"

I am a lesbian; I do not wear flannel. I do want children. I do not hate men.

I am a woman; I do not wear high heels, I do not wear makeup.

I have Cerebral Palsy; I am not a hero. I am not a caution against premature birth. I am a person getting through every day. Just like you.

--

What sparked all this? Well, the lovely Chatelaine of Tubaville joined a cause, you see, to boycott a movie. Ms. Tuba isn't hysterical, so I checked it out.

Turns out, Warner Bros' new flick entitled "Orphan" was the one on the boycott block. And I can absolutely see why.

"There's something wrong with Esther" one tagline reads. And who is Esther? For the majority of the movie she's an older adoptee- in some clips she even appears to exhibit Radish behaviours. Raging, triangulation. Lather, rinse repeat, you all know this story better than me.

But instead of an eye opening flick like Martian Child (see this! if you haven't, see this NOW) "Orphan" degenerates into a slasher film. With a 9 year old villian who's spent time in hospital for behaviours

This isn't okay by me.

I posted the link to my f a c e b o o k page, and immediately got responses. But not the responses I'd hoped. I was told "But they changed the tagline."

Yeah. From "I don't think Mommy likes me very much; it must be hard to love an adopted child as much as your own" to just "I don't think Mommy likes me very much." Grrrrrrrreat change there, Warner. Or "There's something wrong with Esther." Even better- SO politically aware. There's something wrong with kiddos available for adoption now, ESPECIALLY traumatized ones.

I was also told "People don't go to horror films for info." No, maybe not, but NO ONE is going to convince me, ever, that people don't get info from the media. Absorbing it without even realising it, sometimes.

And my personal favourite?

"Oh, doesn't matter- She isn't even a kid in the end, she's some kinda demon thing."

Demon?

DEMON?

This makes it *okay?!*

--

Not by me. And it's getting less and less okay as time goes on.

Back at School

2009-05-15T11:07:00.000-02:30

Hey all

I'm back doing the Intercession at uni. Elementary German and 20th C. Popular Music.

I'm pleased with both- My German professor was a kindergarten teacher and so doesn't expect perfection, and my Music prof? What can I say. He's a grad student who wears great hats to class and comes up with brilliant accomodations for me- on his *own*- without seeming the least bit awkward or nervous.

Example- We have a playlist of 60+ songs that we need to listen to for the course. Everything from Mamie Smith to Bob Dylan to Frank Sinatra. Of course, going to the library and downloading all of these from a data CD would be possible, but the Music library isn't the most accessible. So, while I was puzzling out how I would manage it, Grad Prof suddenly grins, points to the bag on the back of my chair.

"Is that a laptop?"

"Yes, it is."

"Bring it next class and I'll bring you a jump drive, you can just pull the songs off that and give it back to me."

I show up for class today, and lo and behold, he's *remembered* the jump drive!!

I have high hopes for the next 6 weeks.

Light, love, and energy to you all.

Ashley

PS: Daily Funny

While waiting to go to class today, I saw two professors heading down the hall, conversing.

Prof 1 I'll just use the proleteriat bathroom

Prof 2 Are you sure? I really can let you in...

Prof 1 No no, I should suffer for my forgetfullness

Not Okay, Not Okay, NOT OKAY

2009-04-30T13:49:00.000-02:30

Not me- I'm coping.

I'm also furious.

I have, until recently, *really* enjoyed Dan Savage's column, podcast, and books. I've *bought* Dan's books, for heaven's sake.

http://www.thestranger.com/seattle/SavageLove?oid=1487886

And now this.

Can't handle it. I've listened to the podcasts in which he uses words like that, and I've always let it go as heat of the moment, doesn't know any better.

But another reader did what I didn't- Stepped forward, tried to educate, and was instead, mocked.

I can't support that anymore. I can't excuse that anymore. Maybe I should never have done.

I'm sorry I ever recommended him to anyone, I'm sorry I ever read his books, bought his books, listened to his podcast.

This is his fanpage on Facebook where I intend to voice my displeasure and then leave.

http://www.facebook.com/home.php#/DanSavage?ref=ts

This is NOT okay. Not by me.

taptaptap

2009-04-19T18:58:00.000-02:30

Even though I feel so afraid and stupid right now, I'm still a really great gal...

Even though I feel so afraid and stupid right now, there will be brighter days ahead

Even though school isn't going so well right now, I have lots of other things to contribute to the world...

Oooooooh boy, I try not to post on Blogger unless I have something positive to say or funny to share. I don't. I'm done in...

Good choices?

2009-04-04T14:25:00.000-02:30

Have been compliant on my new meds for over 2 weeks now- This is absolutely new for me... and as I do not like change, I'm having a little bit of difficulty with it. Weekends are probably most difficult, and I sulk once the purple thing is in my system... but at least it gets there.

Am getting ready for exams and break and gainful employment and for the parents (please God) to find a good deal on a Southern vacation and GO there...!

Anyway, just a brief update

Light, love and energy

Ashley

I got gnawed on by Torina's troll...

2009-03-24T15:19:00.000-02:30

So just in case any of my real internet connections doubt the truth of my moderate claims at disability expertise, the following is a link to the first page of Google results which pop up from a search of my real name

Trolls inspire anxiety and hatred, and should be ashamed of themselves

Google

Keynote Address

2009-03-24T09:21:00.000-02:30

It went well! I'm hoping that the rules of Open Space Technology I was trained in 2 years ago held true and that the people who were meant to be there were there, and that I started and ended at the right time.

The text is linked below, even though Google should be doing this a little more easily for me, for those of you who might be interested in reading. The statistics cited (though there are only a few) are Canadian numbers- I don't know what the American or North American numbers are.

Keynote

A Busy Week Ahead

2009-03-23T09:29:00.001-02:30

Wow, it's shaping up to be quite a week. Thank God for some new meds (Well*butrin) which are helping me. Wish I had tried this particular drug family years ago! S-S-R-Is make me feel like my brain is jumping out of the top of my skull and make me sleep 16 hours per day- These don't!

Why is it shaping up to be quite a week? Well, I have a keynote address to give tonight for a project called All Abillities Welcome, and then on Thursday I'm off to Ottawa for a Strategic Planning meeting with the Active Living Alliance... And let's not forget that I'm still at university, too!

I want to leave you all with a final thought- Some of you will know immediately what I'm referring to when I say this.

The "disability community" and by this I mean all atypical folks, all folks who parent atypical folks, and all folks who work with and for atypical folks, has enough to deal with. Having an attack from what should be an ally or at least a silent visitor shakes all of us to the core and detracts from the progress we're trying to make.

I learned something from a video when I was little that maybe some "grown ups" need to go back and revisit. "If you can't say somethin' nice, don't say nothin' at all."

Seatbelts

2009-03-19T18:48:00.001-02:30

And this is why I will uncomplainingly wear a seatbelt for the rest of my life. It stopped me from getting up close and personal with the dash/windshield when I was rear-ended today

Climbing

2009-03-12T09:21:00.000-02:30

Sorry to have worried you all...

I cannot eat an elephant all at once, but I have taken some small bites today and will hope to take some more soon.

And there is still music in the world.

I'm grateful for that, and for all of you.

Crash

2009-03-09T09:55:00.001-02:30

Sick

Struggling

Scared.

Still here.

I read everyday

Vacation

2009-02-21T20:54:00.000-03:30

Hello, Blogger Friends!

After making it out two hours late on Thursday, reaching my desination city and then *turning around* due to ice on the runway, Lady and I reached our hotel Friday afternoon, after flying first class!

Major kudos to Edwina the Air Cannda agent for calling me personally with my upgraded reservation!

Am resting and recharging for a few days, but couldn't resist sharing a few pictures with you.

My awesome accessible room where I diligently sit blogging on my (free!) Internet connection

My Accessible Bathroom

And my Build a Bear- Complete with Wheelchair, because I'm *really* just a kid.

Gawain the Build-A-Bear is really making me consider writing a children's book though

Birthday Blogging- Or, why I am not a RADish

2009-02-10T13:55:00.000-03:30

(This is not meant to put any blame on the radicals I love so much- Just something I was thinking on)

So, today is my birthday and I am 23- and I asked myself why I have been able to make it so far, when, if you look at my life on paper, it looks like I should have some pretty big issues.

My Mom got pregnant when she was 16 and gave birth to me 10 weeks early. For the first two weeks of my life, no one could touch me, and they even told my Mom "Don't get attached to this baby." Even when I could be touched, I was fed by ng tube for another 6 weeks, as my sucking reflex was "broken"

I spent the first year of my life shrieking in pain from muscle spasms no one knew I was having, while my entire family took me from specialist to specialist trying to figure out why I cried so much, why I couldn't sit up or hold my head up, why I didn't use my left hand, why I hated being swaddled.

It's hard to love a kid like that- Pain cries especially.

But I put the blame of loving me on two people- My Mom and her mother, my Nan.

Nan was the first person to hold me. She had 10 children already, and simply took me on as #11, cutting my mother's fingernails in the caseroom so that she wouldn't scratch me with her long 80s inspired talons. She also learned how to drop the feeding tube down my nose like a pro so she could do my noon feeding when Mom went back to school, and there was *never* any talk about not taking me home once I got out of the NICU.

Mom is another story, the sheer weight of which didn't hit me until I was 16. See, my Mom made some big mistakes... So my whole life I had wondered what it would be like if I had a Mom in her 30s or 40s like my friends had... someone who wasn't taking classes or still having "girls nights out".

And then I had a pregnancy scare- REALLY only me sitting close to a boy and being very naive- and spent the worst 3 days of my life hoping my cycle would come, and scared out of my mind that it wouldn't. It came, of course. Sperm can not jump through 4 layers of clothes and across distances!

But, when it was all over and I sobbed to my Mom over the phone (I had taken refuge at Nan's just in case) "How did you EVER have a baby? Weren't you scared!! Someone must have made you!!"

She answered,

"I wanted you. From the minute I knew you were there."

Me

2009-02-01T18:35:00.001-03:30

I put a photo up, and my 23rd birthday is in 9 days- exciting stuff!

Advice, Please?

2009-01-26T20:29:00.000-03:30

I know a young couple. S and C. C went to highschool with me, and S went to highschool with Lady. But it really wasn't until S and C married 5 years ago that we all became close.

They have now seperated. C remains in a major city for her job. S is at home with his family.

I am shocked and heartbroken. I love them both and wish the best for them both....

Any words of wisdom?

A New Week, Some Energy, and Some News

2009-01-26T09:17:00.001-03:30

Welcome to my Monday. I got my shot Friday afternoon, so by Friday evening I was full of weird, almost dysregulated energy- Thank Goodness that Lady is unendingly patient and just providing me with things I could do. Maybe my RAD tendancies are showing?

I'm kidding.

I'll be travelling Feb 20-23ish, for a meeting and a break. Wish I could share my break with all my blogging friends.

Also- P. 56 in the nearest book to me is Cris Beams Transparent and the 5th sentence reads

"Dominique, for instance, had Julianna, who, if she had been born an insect would have been born a firefly."

Books about Radishes for Radishes?

2009-01-20T10:21:00.000-03:30

Do they exist?

The reason I ask (and I'm not talking straight biography here, I'm talking fictional books) is that there were very few books about kids with CP when I was small. In fact, now that I think about it, there are still not that many.

But one I was very happy to find was Mine for Keeps by Jean Little. It was, however, written in 1962, so not the most relevant for a little girl living with CP 30 years later- but there were some pieces.

Of course, as I got older I've really begun to see and critique the flaws in Little's book. She didn't have CP, she didn't live CP, she only taught some children who did- So Sal's life reads a little like "I did this. And then I did this. And then I did this." Like an observer.

The author does live with vision loss, knows it intimately, and this shines through in another of her books- From Anna. Published in 1973, Anna is a young girl living with vision loss, and her story although told in the same, simple appropriate language for the age group, rings much more...true, I suppose. Anna just doesn't go to school with her glasses- She *IS* at school with her glasses.

This got me thinking about Radishes. Are there similar books? Would Radishes who are in recovery find comfort in a book about a boy or girl with an Awesome Mom and an AT and weighted vests?

Hoping this post is making a little sense- I'm going to hit publish anyway

Forcing Self To Blog

2009-01-19T18:35:00.000-03:30

I am still here.

I read every day and laugh and shudder along with so many of you....

Quite tired- Am hoping to see Doc this week for a B12 injection that will at least make me think I'm feeling better.

A.

Constant Advocacy

2009-01-15T14:38:00.000-03:30

I'm back at school now, and have been back for about a week. Am tired already. Am tired of advocating for myself- sending e-mails to make sure my classrooms are accessible, making sure I can use my laptop in class, making sure the elevators are working...

Oh, elevators. There is one which controls my access to two of the buildings in which I have class- It's been working on and off since I started school on Jan. 8, and today was an off day. And I realised, as a first year student with a disability, sobbed on my shoulder about how not fair it was that the elevator was broken, that I just wasn't there anymore. I've been at uni for 10 tems now. Elevators have broken before my career at uni, will break after my career at uni. I will just sit back and wait for them to fix it. I don't care about how 'fair' or not it is anymore.

There are really days I feel tired of fighting.

And then I read a post like J's
And I think that if that little dynamo can be so courageous- I just might have one more letter or signature in me.

Ramblings Just Before School Starts

2009-01-07T16:32:00.000-03:30

So I'm back to school 5 days a week as of tomorrow. I love the start of a semester- the rush and energy of starting new courses. It's only about 6-7 weeks in that I get bogged down with pain and stress and fear and procrastination and depression and all that fun stuff. Any suggestions for tapping or rubbing around that, folks? Or other tips?

Lady's coming back too, as my PCA everday and my classmate in one course.

Sister Lizzie has been back in school since Monday- I don't think she's impressed, but then again what DOES make you impressed when you're 15?

I'm also considering a job as a respite provider for a family friend- Emotional respite as opposed to physical care which is what I get myself. It's a testament to the wide array of abilities of the non-normal that we can have and give services that are similar!

Well, I'm off to pack my bookbag

Light, Love and Energy

Ashley