Filed under: Hospital, Seizures | Tags: day seven, epilepsy, healing, myoclonic epilepsy, one week, pain, recovery, seizures, vagus nerve stimulator, video, vns device
Thursday was Thanksgiving here in the US. Basically that means that this whole week has been “that kind of week” because it takes you so freaking long to prepare for the damn thing. Defrosting things for days, curing, baking, roasting, drying. . . I don’t know. The only thing I made from scratch was cranberry sauce and mashed potatoes.
Also, it was just my boyfriend and I.
We stayed at home and napped all day.
I freaking deserved it.
It’s now been a week since I’ve had surgery. Time has really flown. Even though this has been my week off work, I actually have been working shifts at my 2nd job, so instead of healing, I’ve been slinging bar.
Plus I had a dentist appointment this week and had my face all numbed up traumatic style on Monday and then went to the ear doctor on Tuesday. Basically ENT doctor told me “tough cookies” regarding my tinnitus. Since my hearing is within normal range, basically there’s not much they can do unless there’s something physically wrong with my ears like a broken whatcha-ma-concha or fluid filling it. Basically because it could be a side effect of my meds or whatever, meh. There are five things they usually they usually try: antiepileptics, anti-anxiety, anti-depressants (two out of three of my meds are those types, so. . . ) - more meds to counteract meds! Hah! Then there’s a special hearing aid that does nothing but attempt to filter out the tinnitus. Then there’s just not being in quiet places. Listening to music (or white noise at night, which I can’t because electronic sounds give me migraines = seizures), etc. That’s annoying because I get sensory overload if I have too much sound. . . so. . . sigh. Tough cookies.
But anyways. It’s been a week and I have had this VNS device inside my body! Even though I did a ton of research about it before getting it and yet I am so thankful for my vascular surgeon, his skills, and the advancements in the techniques, etc.
My lead wire is put very low on the vagal nerve, near the nook in the throat. The doctor said that they started putting them there because it eliminates the scratchy irritation you get during the stimulation mode. He told me to let him know if I noticed any discomfort. I don’t know what that means.
Are they going to cut my throat open and readjust it!?
Not only that, but they put the scar right along the collarbone so when it heals it will just be a wrinkle. Same with the generator’s scar – an armpit crinkle. Beautiful. When I left the hospital they were both dry and I had no bandages. I’ve never had a major surgery with absolutely no bandages before. Bizarre. Reading about other VNS implants within the last two years, they leave with big padded gauze and staples.
Some of my favorite videos to watch were of a lady who is just a couple years older than me, has a similar diagnosis (her’s is uncontrolled juvenile myoclonic epilepsy), a similar body frame structure – I learned a lot from her seven videos chronicling the first few weeks of having a VNS device. The thing is that they were from just less than a year ago and she went home bundled up like a car accident. I was surprised that I didn’t have at least one of those clear covers over the incisions, but my summary said I could start showering the next day.
Good to go.
I am thankful for an easy recovery.
And no staples.
Also for my family and my kitties and all that.
Mostly no staples, though.
Here is a progress video. It’s actually filmed in my bedroom. (Bam chicka ba-wow) I found out that the #1 way to get my eight month kitty to give me loves, since he usually ignores me, is to film a video in the bedroom. He purred and made biscuits. He was all over that. His name is Moulton – after Alex Moulton, the frame builder/bike company.
(The video’s kind of jostly. I blame Moulton.)
Filed under: Events, Products | Tags: bicycle, bike, bikecraft, bottle opener, caroline, christmas, coloring book, cycling, cycling cap, elly blue, gift ideas, little package, magnet, michael khamsot, secret santa, spoonflower, Taking the Lane, taliah lempert
It’s that time of year to spend all your money on your friends and family! But seriously, it’s stressful enough to think of things that your loved ones will use and love. I put a moratorium on shopping for all my family after Halloween to give me ample time to glean by their interests what they actually want. It’s exhausting. It’s not really what the season is about; but it’s fun to get little trinkets that family will enjoy.
- A simple bike chain bracelet. I’ve seen a lot like it. However in purchasing this you get to support villagers in India.
- Check out Taking the Lane! Elly Blue has added some amazing things like a couple different kinds of bike magnets (fancy/simple), Taliah Lempert’s Bicycle Coloring Book and much more!
- If you’re here in Portland, Oregon this winter, spin on over to Velocult for the 9th annual Bikecraft PDX! November 30 & December 1st from 11am to 6pm. There will be an after-party on the 3oth at 7pm. The event is free, but be sure to bring money for beer, coffee, food and of course the dozens of vendors that are going to pack themselves in. Every year is amazing and you’re sure to find some really fantastic handmade local gifts for all the bikey friends and family in your life.
- Don’t have an event? MAKE ONE! Often times my friends and I will make a “Secret Santa” list at Thanksgiving to run through Christmas. It’s a fantastic way to keep gift giving prices down. To only have to shop for one friend instead of twenty and yet keep everyone involved. Announce the “Santas” at a new Years party or after Christmas party.
- Dressing-2-Go - What? Really? Yeah. See, I really hate travel containers. They always goosh at the lid and the plastic is crappy. These are airplane-sized, the silicone goes all the way to the top of the threading so no break through gooshing. I use it for hand lotion in my purse. They’re great for shampoo for bike camping. Oh, and you can actually use them for salad dressing. The only problem is that if you’re not careful when you squeeze them they do goosh salad dressing sized blops of lotion on your hand because of the size of the hold on the lid, but other than that – I LOVE them.
- The Road Bike Key Chain Mini-Tool. Local designer, Michael Khamsot has made this awesome bike shaped bottle opener, hex tool, key chain. It’s uses are endless.
- Bike Chain Bottle Opener. This is really freaking unique looking. And in buying this you are supporting villagers in India.
- It’s a little late to start projects, but you can get some amazing, unique fabrics from Spoonflower. Simply search for “bicycle” or “bike” – you can buy in yardage, fat quarters or test swatches. If you’re just making oven mitts or baby bibs you can get a few quarters or swatches in different styles and makes some really cute mix-and-match designs!
- Caroline over at Little Package Cycling Caps makes amazing hats. She’s also a very sweet lady and Portland based! Sometimes you get the creative bug and want to make your own hats. Well, she offers that option as well! She has a three panel AND a four panel pattern. Can’t wait for delivery? She has downloadable options. I like the physical patterns because they come with the insert for the brim and the elastic trimmings etc.
Filed under: Articles, Bike Rides, Events | Tags: bike portland, bike rally, cranksgiving, food drive, fundraiser, outside in, portland, thanksgiving, transition projects
This Saturday was a really long day for me. I just had my VNS surgery the day before and I went in to work later that day – but I still managed to have the energy and work through the neck and chest pain and wrangle cyclists for the fundraiser event. Needless to say, after I got done working at the bike park that night I was exhausted and in a lot of pain. I slept really well that night.
But anyway, the event!
I helped organize Cranksgiving Portland with three bikey friends. This is an international deal that happens in almost two dozen cities world-wide. You can check out if it happened where you live. Basically we held a bike rally and a fundraiser. We picked a charity to be our benefactor. That part of the event was kind of my forte.
We decided on Outside In. They help at-risk youth and homeless youth. They help with mental health, drug/alcohol, tattoo removal, job skills, case management, etc. All the proceeds from the event (food, donations, money etc) will be going to that stellar organization.
I also set up a donation barrel for Transition Projects. They offers many services from having a day center for homeless, engagement staff, access case managers, transitional residential programs and more. I ended up collecting FOUR huge garbage bags full of hats, gloves and jackets for them. If you do live in Portland, you can continue making donations to Transition Projects. Please refer to their wishlist and my previous entry.
We ended up with 96 people on 23 teams returning back with over $1500 of food!
That’s freaking amazing.
In addition to that, Dave’s Killer Bread donated 100 loaves of bread to Outside In. We had some amazing sponsors that donated prizes to the teams. It was great fun had by all.
Major props to Laura Recker, Tom McTighe and Zed Bailey. We were all able to pool together our unique strengths and come up with a really interesting and fantastic fundraiser. I am super impressed with all the amazing donations we were able to raise as well as what we were able to collaborate in such a short time. It really shows dedication.
Filed under: Articles, Tips | Tags: donating, donations, homeless, shelter, tips
(Incidentally I am rolling this out the same time as BikePortland is rolling out an article about an event I helped organize on Saturday regarding this type of thing. Coincidence!)
As some of you may know, I work at a women’s transitional housing facility. It’s kind of like a homeless shelter; but the next step up. They work with case managers in a residential setting to find housing and jobs during their 4 month max. stay or whatever their case plan is; work on their SSI/Disability, go back to school, etc. I have worked in this sort of non-profit setting before this four year stint and what I am most impressed with is how badly people are at donating. Back on November 25, 2011 I originally published an article on another (defunct) blog of mine that while not cycling or epilepsy related, IS holiday related, so in the 2 year anniversary of this article; I am republishing it here for your edification.
During this time of year people always become so damn charitable. It could be that they’re making way for new and fabulous items that they will be receiving from their friends and families in shiny wrapping paper and ribbons or that they will have to purchase themselves to make it look as if they are “keeping up with the Joneses” when the in-laws come into town. Either way, a lot of stuff ends up getting bagged up and sent off to thrift stores or homeless shelters.
First, as an employee that spends countless hours grueling over sorting and processing donations through the night here at my facility, I would like to thank you for your donations. Without these items we would be hard up to help out the people we are trying to support. However, sometimes things should just be taken to the thrift store. I have decided to write out a helpful little guide to assist you.
Also, please remember that most shelters are open year round. (with the exception of winter warming centers) Donations are actually sometimes needed more in May than in December. Plan your tax deductible donations sensibly. Your CPA will appreciate it and so will we!
I know you loved your great aunt Elsie very much and it broke your heart when you had to box up her property at the retirement community she lived before she passed away. Your favorite memories of her were when she stood up in church and testified and the sun rays glinted through the windows and shone off of the sequins on those fabulous sweaters she wore every Sunday morning without fail. Cherish those memories. Maybe hold onto a couple of those sweaters and sniff them every once in a while to remember her scent, but for God’s sake, do not donate them to a homeless shelter. If you wore it to your nephew’s christening and you’re donating it because you just can’t think of another occasion when you’ll wear it, I will guarantee you it’s not appropriate for donation. DRY CLEAN ONLY. Seriously? I know why you’re getting rid of it. You didn’t check the tag when you bought it, or convinced yourself that if it ever got dirty you would absolutely go to the dry cleaner. When have you ever been to the dry cleaner? Honestly? Now you’ve pawned it off on someone else. It’s not a white elephant gift. It’s supposed to be charity. I realize that the first goal is to keep people clothed and warm. However, these people are often going out and looking for jobs and apartments. (At least in my facility.) So, I am adding, don’t donate outrageously out of date clothing like anything with shoulder pads.
Everyday pants of any material (denim, corduroy, slacks, etc) in any size. Often shelters are lacking in the very large woman’s sizes. (IE 22 – 28) And very small (IE 2 – 4) Pajama pants, t-shirts without alcohol or offensive slogans/language on them. (Even ‘positive language’ can be borderline. Unfortunately a ‘Gay Pride’ shirt can have a lot of negative reactions.) Plain shirts, button-down, etc. Casual, business, etc. Sweaters and sweatshirts. New underwear. (Some shelters accept used underwear, but not all. Underwear is an item we always need in every size, especially in the larger ones.) New or gently used socks. Shoes that are in good condition; not just regular sneakers, hiking shoes or whatnot, but nicer shoes as well. New and gently used bras.
The great thing about men’s clothing, is for the most part, it is timeless. . . except for Hawaiian shirts and anything from about 1984 to 1996. It’s OK, though. The hipsters want those things anyway, so go ahead and free box that stuff and they will flock to it like a kitten to a saucer. Especially if you throw a brown button down cardigan on top to lure them in. Let’s just go over the obvious of what not to put into the donation bag. Don’t put polyester suits. The ones from the 70s with the big collars. Let’s just make this really easy on me and I am going to say don’t put out of date stuff. Yes, I know 80s is “back in vogue.” No, no, no – it really doesn’t mean it’s OK to bestow your Van Halen denim jacket on some poor unsuspecting soul. . . actually, you could send it to me. Also, offensive or promotional t-shirts. I know you don’t like it. I know you were given it at a bar or a street fair and it’s been hanging out in your drawer forever. Use it as a shop rag. Give it to the thrift store. Paint the house while wearing it. You know what’s not cool to do? Give a dude in recovery a t-shirt with a giant beer slogan on it.
Men’s clothing is really easy. Pants. You all wear them. For the most part, you all want to be not wearing them from what I understand. Well, give them up and give them to the shelter. Jeans, slacks. Even your great grandfather Torvold’s high rider’s can find a home at the shelter. Even though his trousers were pulled up around his nipples, I am sure they can rest comfortably around some guy’s normal waistline. T-shirts and long-sleeved shirts. Button-down shirts, both of the casual style and job interview quality. Suit blazers if they aren’t obviously dated. You are welcome to donate neckties, but please be aware that these often are slow to be handed out to clients in the shelter environment, so personally I would advise against bringing in the bag of 50 ties you have from your grandfather’s recent death. I would choose a few that are neutral, would most likely go with many different shirt colors, are of a modern width, and then give the rest to the thrift store. . . or mail them to me as I do a lot of fun craft projects with ties. . . New and gently used socks. As I said before with the women’s clothing, not all shelters accept used underwear, and it’s just really nice to give new underwear people. Seriously. Both boxers and briefs, though from the little time I’ve worked at a men’s shelter, they were more grateful for anything than picky. Shoes of different calibers from sneakers to running and hiking, dress shoes and the like.
Toiletries are integral to the everyday function of the shelter. Here are some things to think about if you’re thinking about purchasing for a shelter near you. Also, if you happen to be cleaning out that drawer full of hotel shampoos and conditioners from your many amazing vacations, we love those! Put them in a big plastic bag and when you bring in your “appropriate clothing” donation bring those along as well! At my facility the hotel-sized shampoos get handed out to clients for their personal use, but regular sized containers of shampoo/conditioner are considered “House” and are shared amongst all clients, so it’s really nice to have the small ones for clients to have their individual containers.
Mouthwash with alcohol in it. Some shelters don’t care but some places are residential and have a zero tolerance alcohol programs. Usually hotel mouthwashes don’t have alcohol in them, but not always. You donation may not make it to its intended recipient and end up getting thrown out if the people processing donations are unsure if its appropriate.
Shaving cream/razors – this is an iffie. Check your recipients list of needs! (this seems weird, but at our shelter we provide razors in our budget, and get a ridiculous amount of shaving cream donations. Currently at my facility alone I have over 700 disposable razors and boxes upon boxes of shaving cream. Honestly, it’s not really that much of a necessity as you would like to think. We get the donations anyways and a little goes a LONG way.)
Giant Costco-sized value containers of anything. Sometimes the shelter hands out full-size products directly to clients to keep when they are moving into housing. Clients don’t have the room for, nor do they want to lug around 4 lbs of pomegranate body wash in their backpack, generally.
Tampons. (Another iffie! Check your personal recipients wishlist!) Weird, I know. They’re great. Most women use them. They’re convenient and all that. Unfortunately a great deal of shelters reside in older buildings with sub-par plumbing. My facility, while they can’t outright “forbid” them, doesn’t provide them for clients because they do exactly what they were made to do. . . which is clog up the pipes. . .
Toothbrush lids or containers
Toothpaste (the little tubes are actually better than the big ones)
Deodorant (unisex scents preferable)
Hand Lotion (light or unscented preferable)
Standard first aid supplies (individual antiseptic gel packets, band aids and liquid hand sanitizer are my favorites)
Denture bond and Cleaner tabs
Blood Sugar Monitor Test strips (we get the monitors as donations all the time, but they’re not very much use without the test strips and your donation can help a person manage their diabetes for a month)
California king size sheets. Yes, we need bed linens. Yes, I know you believe that the government just hands people experiencing homelessness welfare checks and food stamps. Unfortunately they still sleep on twin-sized beds, or worse, mats on the floor. So, stop giving us your old ginormous bed sheets. They’re ridiculously huge and I can’t do anything with them
Down Pillows. I love down. I have down pillows myself and a down comforter. Do you know that kind of funky smell they get when they’re not quite dry, though? Yeah. Now imagine that smell for days. It’s gross. Now imagine that smell multiplied by a room full of, say 30 – 50 of them. It’s terrible. Just don’t do it to me.
In fact, since we’re on the pillow issue, let’s just say used pillows at all. There is a reason you’re getting rid of the pillow in the first place. Its gotten flat. The fiber fill has matted down. Detritus has formed inside the casing. There is sweat stain on it. Sleeping on someone else’s used pillow can cause weird pressure points, migraines, etc. etc. However, you can buy a lovely brand new pillow at a store for like $5 and donate that instead.
Coffee (Donate lots of coffee. Not decaf. Not instant. Just some good old fashioned pre-ground coffee)
Flat & Fitted Twin-sized Sheets (if the shelter specifically asks for bed linens)
Sleeping bags or tents (depending on the specific needs of the shelter. If they don’t ask for it, I would ask them)
Food Donations (often shelters will post what kind of non-perishable donations they need. If you want to donate large meals, call their volunteer organizer for details)
While I am sure that this is a greatly incomplete list as all shelters have different needs for their situations, but I hope this is something that can help you make informed and generous decisions in your donations throughout the entire year.
A Note on Children: I haven’t purposefully omitted them from this list. When making child based donations, there are many professional organizations that will ensure that toys and clothing will end up with children and needy families. Putting toys and kid clothes in donation bags sent to homeless shelters not “family oriented” usually means that those items will end up being reprocessed and end up being sent off to a thrift store or even thrown away. My particular shelter is 18+ so we don’t deal with kid items at all. Many local organizations have clothing and toy drives during the holidays and even offer large bins conveniently at super markets and such so you don’t even have to go out of your way to dump your kid’s old crap.
Filed under: Bike Rides, Events, Hospital, Seizures | Tags: cranksgiving, day one, epilepsy, healing, helltrack, lumberyard indoor bike park, magnets, outside in, pain, recovery, transition projects, vagus nerve stimulator, video, vns device
Sometimes during the summer you get shotgun postings from me. That’s because there’s exciting things in my life going on. Well, there’s something exciting going on right now. That’s why I can’t hold to a regular schedule. Today’s a twofer! Complete with video. Don’t get used to video blogs.
Are they called vlogs?
Today’s an exciting day for me. The day after my surgery I am heading down to Cranksgiving to help run the show. This will prove to be exciting and exhausting enough as is. However, not only is this bike rally and food drive going to be super fun, we’re giving back to Outside In, which helps at risk and homeless youth as well as the fact that I am setting up a jacket barrel for Transition Projects for warm clothing donations for homeless adults. If that wasn’t enough I am leaving the event in a hurry to get to work by 4pm. Not my non-profit job, but the one I haven’t mentioned. A couple weeks ago I started bartending at an indoor bike park. They’re having a huge event this weekend as well!
Here’s the Facebook event page for Cranksgiving that I am at right now!
Here’s the event info for Helltrack. Today and tomorrow!
Here’s a 15 minute explanation of my aches and pains, etc.
Filed under: Hospital, Seizures | Tags: day zero, epilepsy, operation, surgery, vagal nerve stimulator, vagus nerve stimulation, vns
Friday, November 22nd, I came one step closer to becoming the bionic woman! It wasn’t the most smooth sailing of experiences getting the damn thing implant. In fact in the 24 hours prior to the surgery, St Vincent’s called and changed time on me three time.
So that happened. I mean, I can understand the first time. They pushed it back due to an “emergency situation.” If someone gets their carotid artery slashed or something and needs to jump line; by all means. But then I had this much later time, which technically means I get to eat until 6am. I told the nurse I’d just stay up late to eat because there’s no way I’ll be getting up early for breakfast.
I get a call at 10:10am this morning from the scheduler asking if I can come in as soon as possible. . . I was asleep and she had woken me up. My alarm was set for 10:15. I explained very politely yet firmly that it takes us an hour to get there. “Okay, so we’ll see you at 11 then?” The final word on my check-in time as of yesterday evening was 1:30pm, and I asked her if maybe she was confused by some paperwork because they had changed it so many times. Nope. They were changing me again.
This has been my week actually. With all sorts of people, not just this scheduler. Instead of explaining her faulty math and the fact that we weren’t going to run out the door NOW NOW NOW, I let her know that she had woken me up, I needed to shower and that time plus dressing and then driving; we probably wouldn’t get there until about noon at the earliest.
She said that she would let the nurses know.
While driving there my boyfriend’s mom called and she asked how I was doing and his reply was; “Pretty pissed.” I think that summed it up pretty neatly. I am generally OK with fluid schedules but I had set my alarm in the morning based on a time, ate yesterday based on a time, wasn’t expecting them to switch it up. . . again.
We arrived just about 11:20am.
Check-in went pretty smoothly. I received a little GPS bracelet so instead of swiping my bracelet every time I went into a new part of the building I was just auto-tracked. Kind of cool.
Like they do with runners on marathons.
I have a little post-operative amnesia. That’s pretty normal, but generally I can remember some of what the OR looked like. I don’t even remember leaving my little pre-surgery room to be wheeled down by the anesthesiologist. I sometimes have issues with general anesthesia; but I guess everything went fine and dandy.
First night: My throat is sore. Probably from the breathing tube scraping its way down there. The side incision keeps sticking to the side of my shirt which is annoying to say the least. My neck is very stiff. I don’t have full range of motion at all. To the left, I can turn my head to face my shoulder and to the right, I can turn to face about 45 degrees (if the shoulder is 90). Then the scar tissue starts to pull. As for tilting my ears to my shoulders, that is pretty sore. It seems to be equally sore on both sides about halfway to touching the shoulder. I can lift my left arm straight up in the air with only minimal soreness in the breastical area. Same with sticking it straight forward and sideways out.
My superhero boy friend stopped at the grocery store with me while I whimpered around for sustenance for the week. While I am fully capable of chewing food, I opted for soups, chip, apple juice and ginger ale. Because I feel puny.
Also I am getting some dental work done on Monday which will probably appreciate it as well.
I still hurt like crap, though.
And I wonder how it will look once the swelling goes down.
I’ve been online shopping for scarves.
The Vagus Nerve Stimulator is not activated yet. They apparently did a test activation once they put it in. I was not awake for this, I don’t think. They just wanted to make sure the wires were all connected and the battery worked.
I just have to get through the the next two weeks until I meet up with my Neurologist’s Physician Assistant and she will get me all turned on and set to base stimulation. Two weeks later I will get turned up to maybe therapeutic level.
On a side note: I just got a letter in the mail that my neurologist is leaving the practice at the end of the month. She was the only epilepsy specialist at the clinic so I either have to deal with a generic neurologist until they replace her or find a new clinic with an epilepsy specialist. This happens to me like every two years. Be happy with your job, people!
Interested? You can also read my lead-in article: Getting the Buzz on the Vagus Nerve Stimulator, posted 11/1/2013
Filed under: Products | Tags: cycling, elly blue, feminism, kickstarter, Kirsten Collins, religion, Taking the Lane, zine
“The twelfth issue of Taking the Lane explores the intersection of bicycling and religion, with surprising results.”
Taking the Lane’s 12th issue tackles cycling and religion. These zines are a fantastic collaboration of essays and how cycling effects all aspects of our lives. She has collected articles regarding everything from pets, scifi, womanly issues, crashes. . . and with the inspiration of Reed College religions major, Kirsten Collins, TTL editor Elly Blue has edited this collection into reality.
I have an essay included in this edition; so you should pledge based on that alone.
So while I don’t make any money, personally was invested in the project – what with the six years I wasted on school and then four years or so I spent working in that particular field .
Maybe I’m biased.
Just pledge for the book.
If you’ve never kickstarted, it’s easy.
As long as the goal is met, you get your loot.