Congrats on Your Struggle

This week Ted Cruz recently congratulated a woman on her struggle with Multiple Sclerosis. My first reaction was “That’s a weird choice of words…”,  and the more I thought about it the more I started to think the congrats wasn’t too far off. We should get this out of the way now, I don’t agree with Ted Cruz on many things. Especially cutting programs like Medicare and Medicaid but let’s save that for another post.

Was Ted Cruz right to congratulate that woman on her struggle with MS? Maybe…not like a robot alien who just learned English though.

I often tell people my MS has been an amazing experience. The perspective gained is worth everything I have lost. My struggle with MS has been overwhelmingly positive despite the hardships. Everything out of Ted’s mouth is awkward, maybe he has been reading a lot about Nietzsche and the Philosophy of the struggle.

“To those human beings who are of any concern to me I wish suffering, desolation,nietzsche sickness, ill-treatment, indignities—I wish that they should not remain unfamiliar with profound self-contempt, the torture of self-mistrust, the wretchedness of the vanquished: I have no pity for them, because I wish them the only thing that can prove today whether one is worth anything or not—that one endures.”

Or simply

“That which does not kill us, makes us stronger”

― Friedrich Nietzsche

I guess what I’m trying to get at is, I would rather be congratulated for my struggle than told “I’m so sorry…”. You didn’t do anything to me, why are you sorry? The funny part is, I get way more people telling me sorry. It seems to be much more of a societal norm. Next time you want to apologize for someone’s disease or disability, just don’t. For that matter don’t congratulate them either. We don’t need value judgments on our struggles, we just need understanding.

It’s more telling that the biggest news about this gaffe wasn’t his thoughts on Medicare and Medicaid but how he addressed her struggle. There are 14 million people on disability under the age of 65, we want to know how your going to make medicare better?

National Caregiver Month

With November being National Caregiver Month, I wanted to say thank you to everyone out there helping people like me. I especially want to thank my wife Meg for the unwavering support. I can’t imagine this journey without you!

While all caregivers may do similar tasks, what they mean to the people they care for is very personal. So I wanted to share not only a glimpse of what caregivers do, but what mine means to me. 

Having someone to help you with things (and admitting you need the help), is tough at first. In the beginning, I felt totally helpless. I’ve learned that it’s actually quite the opposite, though. I’ve had help with everything from driving, buttoning my shirt and pants, to even getting helped into the bathroom. Helping with my meds meant giving me an intramuscular injection that would wipe me out for the next 36 hours. I am not sure what was harder, doing it myself or watching her do it. Either way she stuck me like a champ! At least until the blood squirting episode…

At first there was a lot of resentment about all the things I couldn’t do for myself. I have regained some things and lost others over the years, but help is there. With time embarrassment has turned in to humbleness. I still struggle with asking for help, but having a person who puts up with my bullshit and is still ride or die, means the world. I can no longer measure my worth off of the activities I can or cannot do. Because of this my compassion for others has grown immensely. 

Meg and I have gone through a lot together, and I’m so thankful that this crazy MS adventure has only made us stronger. 

Wheels and Red National Caregiver Month multiple sclerosis

Thanks to all who support others through our toughest times.

 

P.S. My caregiver is also the best Copy Editor.

 

Thanks For The Support

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! 

 

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?

Wheels and Red getting on Anacortes ferry to san juans. Multiple Sclerosis

Anacortes WA, Ferry Terminal

Wheels and red driving around orcas Island WA

driving to rosario resort on orcas island WA

The roads though the island felt so magical.

Wheels and red disabled adventure at rosario resort Orcas island WA

The first night at the resort did not disappoint. Meg had to work the next day so we spent the evening checking out Rosario.

Disabled adventurers on orcas island wheels and red

 

Brown Bear Baking making delicious treats for wheels and red.

The line out the door of Brown Bear Baking says it all. They make straight magic back there.

Wheels and red at the eastsound farmers market

Lunch wasn’t far behind. Wood fired pizza, no contest.

Rosario resort marina Orcas Island WA

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.

wheels and red at Doe bay Orcas Island washington

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.

Multiple sclerosis flare up during summer heat

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-

National MS Society – Tips for managing the heat

Nano-Ice cooling necklace

The Iceman Wim Hof

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!

Wheels and red on the cover of Momentum Magazine, PNW

The Mike Herrera Hour, a punk rock talk radio podcast.

The Mike Herrera Hour

Mike Herrera and Kellen Prouse, a Multiple Sclerosis blogger, pose for a podcast photo.

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!

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