Thank you all so much!
I am now over 3 weeks into detox and feeling better. Check out my update from last week! I Just wanted to take some time to say Thank You to the best group of people I could surround myself with!
Leaving Opiates Behind – Day 5
There is hope at day 5!
Leaving Opiates Behind – Day 2
Day 2 was rough!
I can’t thank everyone enough for the love!
Leaving Opiates Behind
This last week has been tough!
Thanks for all the love!
Adventure: Orcas Isalnd
Meg was lucky enough to score another assisting gig up in the San Juan Islands, and this time there was enough time and space for me and Tuck to tag along (thanks to Catherine and Michael Abegg for giving us the room to stay in!). The weekend was absolutely amazing, even though I managed to sprain my foot just mere hours before our ferry home. Hey, at least it was after all the fun stuff, right?
Anacortes WA, Ferry Terminal
The roads though the island felt so magical.
The first night at the resort did not disappoint. Meg had to work the next day so we spent the evening checking out Rosario.
The line out the door of Brown Bear Baking says it all. They make straight magic back there.
Lunch wasn’t far behind. Wood fired pizza, no contest.
While Meg worked, Tucker and I spent the day checking out the resort. This was the spot to watch the sea-planes come in.
Artsy peep hole shot? Why not.
On Sunday we had the entire day to explore the island. We started with Moran State Park.
I love that these guys are down for whatever. Great co-pilots!
The old fire watch tower at the top of Mount Constitution. The best part of it is you can drive all the way to the top. A big plus for the mobility impaired like myself.
Bullet hole from the historic San Juan Island gang wars. Kidding.
When you’re in the San Juan Islands you can feel how special of a place it is. I know we are all excited to get back up there for even more adventuring. But for now, I’ll admit I missed the comfort of my own bed.
Overheated
If you’re battling MS, there’s a good chance you already know that summer heat is a bummer. Personally, when I start to get overheated my optic neuritis gets worse, causing me to lose vision — or even get double vision. It’s not that the heat is causing new lesions; it just makes lesions you already have pass even less nerve signal. The crazy part is, it only takes 1/4 to 1/2 a degree increase in core body temperature, and things start to change. One minute you’re fine, and the next, you’re reliving the height of your worst flare-ups. This is a really common symptom of MS, with almost 80% of patients experiencing some sort of heat reaction. The only good thing about it is that it’s only temporary. Once you start to cool down, things will normalize — an event called Uhtoff’s Phenomenon.
There are a bunch of products on the market to help people with MS cool down in the summer heat. The maker of one such product, Sam White, reached out to me last year with a cooling necklace that was helping MS patients. Sam didn’t set out to help the MS community when he made his product, but the MS community found him anyways. He was nice enough to send me a couple to try, but with it being in the middle of winter here in the PNW, I’m finally just now able to give my opinion…and I’m amazed. They sat in my freezer for months, but when summer finally came and I was sitting around feeling miserable, Meg reminded me about the necklaces. The results were noticeable, so if you have MS or any heat sensitivity, Sam’s Nano-Ice Collar is worth buying. Feel free to check out the link at the bottom of the page.
I’ve done a lot of searching about MS and the effects of hot and cold weather. I came across a man who uses the cold to heal people. Intrigued? They call him the Iceman, but he’s also known as Wim Hof. He developed the Hof Method, which mixes cold therapy, breathing and exercise to consciously control the immune system. I’ve tried parts of the method myself and have noticed a difference in how I feel. With the potential to help those struggling with MS (or any health problem), I think it’s something worth looking into. The idea is to detoxify the body, and strengthen your body and immune system. For more about the Iceman, check out the link.
On hot summer days, my vision becomes blurry and my arms and legs feel impossibly heavy. The best way I can describe it is this: picture wearing rubber gloves, but they’re filled with water; as if your limbs are made of giant water balloons. I have a hard time with anything that requires dexterity, and my legs get weak and wobbly, making it look as though I’ve been pounding beers all day. The only way I’ve found relief is by trying to cool off. So, until Fall comes, you can find me taking cold showers, sporting my Nano-Ice Collar, or hiding in the local grocery store walk-in freezer.
Links-
Momentum Magazine
Hey, look, it’s Wheels & Red on the cover of Momentum Magazine! This issue focuses on disability and desire, which is a cringeworthy yet very important subject for so many people.
Meg and I have always been very honest about our relationship and share our struggles openly. We understand as much as anyone that it’s really easy for intimacy to dwindle as married life goes on; kids, jobs, stress, and chronic illness have a tendency to push it even further to the back burner. But when Momentum approached me about doing an interview for the article they were writing, I paused and thought to myself, “Should I really put this out there?” And that pause is exactly why I decided to go through with sharing some of the most intimate details of our relationship.
Did you know that a whopping 75% of people diagnosed with MS have some sort of sexual dysfunction? That’s too big of a topic to be ignored, or paused, or glazed over to keep people from cringing. Struggling in the bedroom is no walk in the park for a relationship; it can cause a dangerous cycle of stress, frustration and disappointment when the subject is approached without love or compassion.
Since the magazine has been published, a lot of my ultra supportive friends and family have called me brave for putting it out there; but really, I just want to break down that stigma of sexual dysfunction and the harm it can cause. For anyone struggling with this, creativity is key. Open hearts, open minds and understanding for each other are also very important.
Mostly, just remember: this doesn’t automatically make you unworthy, this doesn’t make you less than, this doesn’t make you undesirable. This is just another speed bump that you might need to slow down and take your time with.
Check out the article!
The Mike Herrera Hour
I have been a huge fan of Mike Herrera since way back…1996 way back. Mike is the lead singer of MXPX and Tumbledown. He is a talented musician and producer that also runs Monkey Trench Studios. For MS Awareness month I was lucky enough to sit down and talk with Mike on his podcast, The Mike Herrera Hour. We chatted about MS, MMJ and all around bettering yourself with the internet.
It’s not everyday you get to chat with your teenage self’s punk rock hero; a big thanks to Mike for giving me this opportunity. Check it out!
When you gotta go
Where’s the restroom?
There are so many symptoms with MS, that a bunch of them often get glanced over. The one that has been the most active for me lately is incontinence. The opposite of constipation, incontinence is where your bladder is going to empty NOW; with as little notice as possible. I never thought that at 31, I would be like my grandmother and know where every bathroom in the county is. It can be super frustrating when out of nowhere, you have to go. Basically, my bladder’s alarm doesn’t go off early enough.
Bowel and bladder problems are no stranger to the MS community. In my many years of talking with all sorts of folks diagnosed with MS, so many have shared my struggle. There is a special bond created when openly telling someone that you — a grown-ass, bill paying adult — has pissed your pants. Most likely in public. And they understand…because they have, too.
Needless to say, hitting the road can be tricky; but we love to adventure so we make it work. My solution? An empty gallon jug in the car at all times. When it’s time to go, it’s time to go. There is no planning or waiting for the next gas station.
To those who experience this: you are not alone. I, myself have pissed my pants walking down the sidewalk in Seattle; on the way to a doctors appointment, ironically. As embarrassing as that was (pee smells, folks), it almost feels worse when it happens at home. Ever had to drop a log in a dark gravel parking lot on Halloween? Yeah, me neither…*ahem*. I can guarantee these won’t be my only bathroom fail stories, and when I tell them I wear them like a badge of honor. The plus side is, I can go just about anywhere.
I bet there’s a long list of medications that help with this sort of thing, but at what trade off? I would rather just work with what I’ve got…unless they produce something with side effects that make everything taste like pizza. Incontinence issues are just a small piece of the MS puzzle, but when you add them together it can be daunting. These are just a few on the so-called “invisible symptoms”. They just happen to be invisible because they are embarrassing as hell.
Make Yourself Foundation
Recently I reached out to the guys from Incubus and was stoked when I heard back from their manager. With the band being super busy with touring they hooked me up with the Make Yourself Foundation. MYF is the bands charitable foundation where they do all sorts of cool things for people. We had a chat on the phone and they were all about featuring my story on the MYF blog. Go check it out, Wheels & Red getting down with Incubus!
wheels & red 