Posts

, ,

Able-bodied sex is on the decline, studies show. Meanwhile, at the Poor House…

Attention! This post is about sexy stuff. Therefore, parents / parental-like figures of Ri and Dre should probably just go ahead and skip this one, mkay? Thanks! 

____________________________________________________________________________________________________________________________

And as mentioned above, today on the blog we are talking about SEX!!

I suppose because…you know, wheelchair, paralysis, being GF to my BF quad lover… some assume, ignorantly and wrongly so, that our sex life must be dull. Maybe even non existent! BAHAHA! Oh contraire! And I have noticed over the years that this false assumption somehow creates a safe space for women to ask me some bold, brazen, and borderline inappropriate questions about my sex life—of which I am completely game to answer.

It usually begins with these 2 questions, and the scene could take place anywhere (grocery store, hairdresser, car, etc.):

Question 1 – “Ummm, so does it work? You know, Ri’s thingie?”

Andrea answer 1– “Helllllz yes, girl! Everything works just fine.”

My response elicits a dramatic sigh from my interrogator. Is she really that relieved by this or does she have something else on her mind? 

 Question 2 – “But Andrea, can he feel, you know, the sex?”

Andrea answer 2- “Mmmmhmmmm. Oh, believe me, he can feel.”

Awkward silence momentarily ensues. Either I was too blunt or they are totally confused. Probably both.

And then sometimes, this initial conversation takes an interesting turn, as I find myself suddenly on the receiving end of a full-on sex life confessional, or in some cases…a full-on lack of sex life confessional.

And based on the information I have gathered during those confessionals, I am now going to make a sweeping generalization. I recognize that this might not apply to you, so please don’t get your panties all in a tizzy if you don’t relate, buuuuuuut…

Ladies.

Either I am simply am a magnet / therapist-like figure for a certain subpopulation of women (and that may be) OR, and I pray not, but there is currently, happening (or not happening) in bedrooms everywhere all around us, an EPIDEMIC of unknown proportions. I’m talking about how bored you all seem to be with your sex life. Or how sex with your partner isn’t even happening at all anymore.

I’m half kidding. But for realz – no time, energy, and /or desire to get it on in the bedroom, even under the most standard vanilla scenario? What gives?

I suspect I know. It’s all the hats women wear.

There’s work, babies, long commutes, budgeting, keeping up with the news, Keeping up with the Kardashians, cleaning, errands, shopping, socializing, wine drinking, self-care taking, and all of that training time for that next half marathon. And of course there is stress. And anxiety. And depression. And medications that treat those last 3 but whose side effects numb the nether regions and decrease sexual arousal (I know. I’ve been there).

Being so busy can disconnect us from the most primal parts of ourselves that yearn for gratification, if we aren’t careful, and our modern day lifestyles appears to be straight up damaging and depleting our libidos. It’s not just my observation – studies, articles and the like are popping everywhere.

Check this BBC story out right HERE, as one example. Or this ONE in the New York Times.

But I, for one, need sex. I need subtle, raw, rough, soft, and everything else in between sex. Erogenous zones are plentiful on any body (disability or not), I do believe, and in our house, they need attention. There are other things I want to say, like how tongues are the great explorers and how it can take a lifetime to deeply traverse every mountain, valley and any area in between on a lovers body, but you know all of this already and I’m not trying to write a romance novel. But this I say, cheesy as it may come across – your greatest adventure does not await you in Thailand, friends, it can be found in your very own bedroom. I promise.

I suppose I am writing all of this with a realization – this quad lifestyle (and probably a lot of my own personal health stuff, though that’s mostly in the past) has shifted a lot of stuff that just isn’t priority out of my life. I’m not saying that I am all that great at accepting that fact, because society sends me a lot of messages telling me to do it all, and be it all. But I can’t. I just can’t. And the moment I think I can and take on too much, I am grateful for the way my unique lifestyle forces me to take a step back. I think I will get into that more in a future post, because that is a loaded topic for me. But either way, I’m feeling good that my priorities in life feel pretty clear and, contrary to what most inquiring minds assume, my sex life, is, as Ri puts it – “EPIC!”

, , ,

Last Minute Valentine’s Day Date Ideas for Inter-Abled Couples

Let me start off by saying that for most of my adult life I’ve had a snarky little ‘tude when it comes to Valentine’s Day.

The boxes of cheap chocolate… the heart shaped diamond jewelry…

Not my thang.

And yes, on more than 1 occasion I have completely forgotten it was V-Day (I swear it always falls on a Wednesday – what’s so romantic about a Wednesday?) and decided to go out for a “quick” dinner. Ummm…nope. Not gonna happen in this town.

But 4 years ago or so, cupid pierced me with his gold tipped arrow.

And since then, V-Day is just one more welcomed excuse to spend quality time with my boo. This year, that means we are packing up the old Toyota Braunability Ramp Van for a snow filled adventure weekend over in Bend, Oregon. I’ll share a recap later, but please follow along real time (ish) by heading over to Instagram and following our pals at BACKBONES.

So TODAY is V-Day, right? And that means if you haven’t already crafted the perfectly romantic date for your sweetie, you’re screwed. Just kidding, guys, because I’ve got you covered with these sure to please last minute date ideas.

Last Minute Valentine’s Day Date Ideas For The Inter-Abled Couple (or anyone, really)

Idea #1 – Release Your Inner Artist at Sip and Paint

The concept is simple – you and your sweetie spend a couple hours enjoying a little wine and making a little art. But wait, will this work for the inter-abled couple? Of course, you silly! There is no need to be Intimidated because Sip and Paint classes cater to the masses and are all about having fun. So paint with your hands, paint with your mouth, paint with your feet, who cares! Or better yet, don’t paint at all and use the time to snuggle up close to your date and help direct the creative process.

If you are Portland based, check out these Sip and Paint Shops:

THE LOADED BRUSH wants you to eat, drink, and be merry. Sounds good to me! L.B. offers step by step water color classes for the beginners.

BOTTLE AND BOTTEGA offers Sip n Paint at their SW Portland studio as well as pop up venues around town. Bottle and Bottega aims to help you “discover the creativity that you had long forgotten or never knew you had.” Cool!

POP & PAINT is a women owned business offering Sip n Paint classes at pop up locations around Portland, hence the name.

VINEGOGH is located in the heart of Selwood. This is Portland’s OG Sip n Paint.

 

 

Idea #2 – Enjoy a Couple’s Massage Without Ever Having to Leave Your Home!

Mobile massage is legit, you guys. And that is totally awesome because for those with a physical limitation, massaging outside of the home can sometimes be more hassle than it’s worth. And for someone who hates the whole greasy post-massage body having to interact with the outside world thing (that would be me), I love that mobile massage allows one to transition right from massage, to shower, to bed, or to whatever the night has in store. Ya know what I m saying (wink, wink)?

Check out these Websites / Apps for In-Home Massage:

ZEEL offers the quintessential couples massage in the convenience of your house. It’s easy! Book online and then 2 massage therapists with 2 massage tables show up at the same time and place to rub you and your boo.

SOOTHE also offers a couples massage, but the logistics are a bit different. In the case of Soothe, you book 2 back to back massage appointments for you and your boo, and then 1 massage therapist with 1 massage table shows up to work out those tight knots for a couple of hours. This option might be just as convenient for some couples, though in the Poor house this just wouldn’t make logistical sense.

Tip 1 – if you or your partner need some extra time or assistance transitioning onto a massage table, consider purchasing a new or used table (craigslist) and get ready ahead of time.

Tip 2 – I personally have only tried Soothe and had a nice experience. That said I have heard great things about Zeel.

Tip 3 (Riley Poor Tip)- Ri wanted me to recommend that all P.H.L. readers take some time in 2018 and find a skilled massage therapist that will make regular home visits. Agree! Thanks, Ri!

 

Idea #3 – Have Some Dessert Delivered to Your Door!

Shoot. You waited until the last minute and now every restaurant in town is booked solid on Valentine’s Day. What about dessert? Surely there must be somewhere you can go for a little dessert. Think again, my friends. But thankfully, everyone loves dessert and a Rom-Com (Chocolat, anyone?) in bed. I am a practical gal, you see, and I say if bed is where you want to end up with your sweetie on Valentine’s Day, I say make life easy and do the whole dang date from that singular locale. Technology makes this a snap!

If you are Portland based, check out these places that deliver:

PIX PATISSERIE is a little slice of France in Portland. Decadent chocolates, cakes, macarons, eclairs and more. They deliver 7 days a week through CAVIAR.

THE PIE SPOT does pie, cookies, scones, and things of that nature + they have stuff for the gluten free crowd and they offer lunch and dinner options. This northeast Portland based shop offers delivery through AMAZON RESTAURANTS.

SAINT CUPCAKE has the most darling cupcakes you ever did see. And they taste super yums too. Get yours through AMAZON RESTAURANTS.

 

I’m fresh out of ideas, so hopefully something in here will help create a little romance for you and yours! Thanks for reading, everyone, and have a lovely day! See you next time!

Drea

, , ,

We Don’t Miss Out On Much – A Backbones Blog Collaboration

Have you guys heard of BACKBONES?!?

This aptly named and totally awesome 501(c)(3) non-profit organization exists to “help people with spinal cord injury or disease (SCI/D) and their families connect with their communities.” 

This girl right here (moi!) totally digs a mission of supporting community connection. Therefore, I dig BACKBONES and the refreshingly delightful stuff they get behind (take for instance their yoga discovery workshop for people with spinal cord injuries workshop this weekend in Tucson, Arizona – umm… why are Ri and I not going?!). After meeting founder and executive director, Reveca Torres, at the No Barriers Summit this past summer (remember that adventure?… click HERE to jog your memory), and instantly deciding that the rumors were true – she is wicked cool- I was stoked when she and I decided to do some blog collabs. Here’s a snippet of my premier post for the BACKBONES blog, and a link to read on directly from their site. 

We Don’t Miss Out On Much.

Part of the reason people are in a romantic relationship is to share hobbies and life experiences together, right?

So in my world, I am always pumped to explore some new something with my boyfriend Riley, who is a C5/6 quadriplegic. Of course, there are so many stereotypes about people living with physical disability, and when Ri and I first got together one or two of the naysayers in my life expressed concern over the things I would “miss out on,” simply by choosing to be in a relationship with someone with a spinal cord injury. I ignored those skeptics in favor of love, and over the years, we have (of course) honed in on how we, as a couple, seek fun. Here are our Top 3 Takeaways that might help others living a similar lifestyle to enjoy the adventures of life just as much as we do.

Itchin’ to read on? Click HERE to discover just what these 3 takeaways are all about.

And as always, thanks for reading, friends!! ~~Drea

,

New Year and New Caregiver Conundrums

This last month has felt semi-dominated by the onboarding of Ri’s new care assistants.

And to be fair, part of that has a lot to do with how much I allow this process to infiltrate my headspace on any given day. But to also be fair, being down a few staff members means that I am the backup, which is only ideal for a limited amount of time. So in order to move me out of that role as quickly as possible and round out his team, Ri and I have both devoted a lot of the beginnings of 2018 to actively refreshing job ads, making phone calls, interviewing, hiring, training, and essentially spending our very early mornings and most evenings with people we don’t really know in some rather intimate scenarios that extend beyond our preferred girlfriend / boyfriend parameters. And we be tired, because change is hard, even though we know that these new changes will no doubt bring vibrant, capable individuals into our home.

So yesterday, I sat down at our kitchen island to cathartically write out my mind thoughts. Knowing that I wanted to blog candidly about the challenges that this complex caregiving topic presents, but also knowing that I wanted to be respectful of Ri’s perspectives, vulnerabilities, role as the employer, boyfriend, and, oh yes, the person actually requiring the care, I could not for the life of me figure out how to convey it all without editing my words through an elaborate filter &/or not, but potentially running the risk of coming across as overly emotional and a wee bit self absorbed. Yikes. That left my head confused and my heart a bit heavy as I wondered – even if I could wholeheartedly express my experience, who could possibly relate?

So I sat. And I stared. And my eyes caught on some smudgy old nearly illegible Andrea scribble schmeared across the dry erase board stuck to our refrigerator door. A quote or some random thought that occurred to me one day a number of months back read:

There is so much change in challenge. 

Ah, yes. So true. And if it were any other day that sentiment alone may have been enough to pump me full of positive vibes and set my head on straight as I very much believe in maintaining a perspective that sees change as auspicious and equates challenge with growth.

But I was tired, you see. I was tired of welcoming new people into our home with no guarantee that they would stick around. And I was tired of modeling hundreds of nuanced care steps because that meant I then had to watch on as unexperienced hands poked and prodded at my boyfriend. Shifting from being a girlfriend that helps with care stuff in ways that make sense within the relationship to a care assisting girlfriend, no matter how temporary, tugs at this delicately fearful place inside that never wants to put the overall health of our relationship at risk.

I was thinking about these things and perhaps shedding a tear or 2 as I walked over to the dry erase board, pushed the side of my fist against it, and somewhat aggressively erased and then ultimately rearranged the quote to read:

There is so much challenge in change.

Also a very true statement, and probably a big reason why people give up on change in favor of just doing whatever they be doing originally. I felt like I wanted to be a giver upper, just for a little bit. So I put a big X through my caregiver hiring task list for the day, hit the backspace button on my blog deleting the 3 sentences I spent an hour typing up, and went to meet up with a dear friend that I have known since middle school.

This friend and I talked about a lot of things, one being our mutal shock that next year is our 20 year high school reunion (irrelevant, except for the fact that being this old didn’t help my mood). After deciding that we still kinda sorta look the same as we did back in 12th grade and have accomplished some ok stuff between then and now, I listened in as she gave me a detailed account of just what it is like to be a working mom of 2 young kids + 1 new puppy. I was momentarily sidetracked by a cute little side story about her little one and thought to myself – oh my gosh a baby – Ri and I should totally have a baby (!!), but came to my senses when she explained just how limited her alone time (and even more importantly, her alone time with her husband) had become. Her life sounded damn difficult and chock with its own set of obstacles, but also completely wonderful in a way that seemed exactly right for her. And what a relief (and by relief I mean I broke down crying in the middle of a crowded restaurant), because I could totally relate to her life challenges, despite the difference in the details. Just connecting (and shedding my tears) with this friend of mine who was also stretched a bit thin and wearing one too many hats made me feel so much lighter, capable, and ready to push through this wave of change.

I spent some time reflecting today, and the truth is that for approximately 28 days each month, I am 99.5% in love with my life. That is some good living, y’all, and I ain’t got the time to forget that fact. It is clear though, that I need to reach out and talk to the people in my life when I need some support. I can be quick to assume they won’t get where I am coming from, but they always do.

In regards to the care stuff, Ri and I may always have a bit of an inner struggle with the fact that I sometimes need to step into that role unexpectedly. But I believe in our ability to work as a team and it seems that moments like these enable us to constantly improve our systems and make positive changes in our work home/work environment. And that helps all of us realize that while this caregiver stuff can sometimes feel like a conundrum, it is actually a truly wonderful gift. In my follow up post, I plan to talk more about some practical changes we have implemented over the years, and what changes may be on the horizon, so please check back in.

 

 

Thanks so much for reading, everyone. And HAPPY 35, Ri!

Drea

 

Load More
Something is wrong. Response takes too long or there is JS error. Press Ctrl+Shift+J or Cmd+Shift+J on a Mac.
,

Summer Recap Pt. 1- No More Blahh and No More Barriers Because We Went to The No Barrier Summit 2017!

I’m back and I’m bloggin!

Hi, everyone! If you were beginning to wonder where I, Andrea, went (Hi Mom, friends, those who have chanced upon my beloved Poor House…), the truth is that I took a summer blogging sabbatical. My late-spring state of mind, you see, as documented in this blog post HERE, was, what’s that word I used again? Oh yes, that’s right- blaaaaahhhhhh and I needed to take some time to examine why that attitude was lingering.

Question for you – ever feel like your blaaaahhhhhh is unwarranted, comparatively?

Maybe it’s just me (doubtful), but I find that when I’m feeling a little low/grumpy/whatever, my inner dialogue has this tendency to impatiently cut in, diluting and dismissing my totally legit and uniquely me sufferings down to, essentially, first world white girl problems. But that’s not cool, because while that mindset provides me with a pretty upbeat attitude, it appears to divert space away from actually exploring and giving credence to the breadth of the feelings my shadow side experiences.

I really wanted to explore some of that stuff this summer (next blog post will reveal some detailed thoughts on that) and as luck would have it, early June offered us up a uniquely awesome and auspiciously timed opportunity to kind of kick that off. Thus, Ri + Andrea + Ri’s caregiver made our way down to Lake Tahoe/Squaw Valley to attend the 2017 No Barriers Summit. Despite the fact that I am not the target demographic for the event (or maybe I am and that’s the point), it was a completely transformational experience. I’m at a loss for words, actually. It was one of the most authentic opportunities I have had in my adult life to play, make new friends, connect with old, and challenge those stories we tell ourselves about who we are and what we can do. We attended talks, concerts and were surrounded by innovators. And the product placement?! Totally on point with every banner, shirt and water bottle reminding us consistently that-

What’s within you is stronger than what’s in your way

Heck. Yeah. That’s a message I can get behind (totally rockin that No Barriers Summit shirt at this very moment).

You can check out photos from the Summit HERE to get an idea of the breadth of this amazing event. And please, check out the No Barriers website while you are at it. This organization is seriously the real deal.

And while you may have seen some of our personal photos posted to our social accounts this summer (hint hint- follow us on social-  Instagram Here and Facebook Here), here’s a recap!

 

 

 

This summer has been absolutely epic and I need another blog post (or 3) to sum it all up. So por favor, stay tuned, my friends and I shall deliver the deets!

xo~Andrea

 

 

, , ,

Present Tense Life

Thoughts by Drea (this is a long one, y’all)

These framed photos easily go unnoticed in our home. Surrounded by far louder pieces of artwork, they live on this narrow corner wall, tucked behind an oversized chair that has come to belong, exclusively, to Quill. That little guy is Ri (OMG!), and those little skis represent his first and perhaps greatest love. He swears to me that he is two years old in these pictures (my god he was a big boy) and already he had it figured out. Life plan = skier. Not a police officer, not a firefighter. A skier. Ri tells me “I wanted to be an Olympic skier, or (he pauses to reevaluate his words), really, I just wanted to BE someone in the ski industry. Pause again. He then says- How lucky am I that that came true?”

Ri’s mother, Maria, is the storyteller of the family. She artfully weaves together the most vibrant tales of Ri’s childhood. Sometimes, when she is decluttering (a frequent pastime of hers :), she delights me with a new little Ri guy photo or memento, accompanied by a memory that she wants to let me in on. I hang to each word as every photo breathes enough life into the past for me to pause and wonder- wait a minute- was I there? Is this my memory or have I just heard this one before? I swear to you that sometimes I feel my presence there in that past. Rumi put words to these feelings of mine when he said- Lovers don’t finally meet somewhere. They’re in each other all along. I know this to be so.

Maria’s tales of the past have a cohesive storyline that I think, can emerge only after we have revisited our memories many times over many years. She recounts, with motherly pride, the innate, unwavering determination of her eldest lion cub. Her reverence for Ri is ever present, and it seems that in a way, it was his powerful will, his sage clarity that birthed Maria’s motherly confidence. Our children must teach us so much, and it is clear that from a very young age, Ri made his path known. I suppose Maria saw it as her job to foster that. As the story goes, Riley’s path was far bigger than the state of Vermont (I am quoting a very matter of fact Maria there) and so the Poor’s packed up house and home and moved a young Ri from the snowy rolling hills of Whitingham, Vermont to the tallest peaks of Colorado. Crested Butte was where Ri’s dreams became reality.

All of that is super fascinating to me, for many reasons, one being that Ri and I have never really been skiing together. Or, maybe we have. I am deciding as I write.

On that topic, a couple months back, Ri decided that he wanted to go downhill skiing through an adaptive program at Mt. Bachelor. Very cool. We set up a weekend trip to Bend, and though I was totally stoke, I remained cautiously flexible as our plans tend to change with the wind.

Alas, as the weekend trip approached the weather forecast called for warm rain- yuck. In short, we bailed. Instead, we had this wonderful weekend at home building roll under raised garden beds with Ri’s dad and getting our garden spring ready. My point- it really was neither here nor there.

newgardenbeds_Fotor

The new roll under garden beds!!

And all of that brings me to a few things that I think about quite a lot these days. There are gifts that emerge from even the darkest moments of trauma. I do not know, had Ri never had his SCI, that Maria would so willingly allow me to be a part of her past, of their past. I do not know if she would have the same beautiful hindsight.

I do not know if Ri and I would bond so deeply through the slow savoring of the present, a reverence for the past, and a celebration of small triumphs. Through our relationship, I have learned to go easier on myself, to be moderate, and to free myself from a pattern we can all be guilty of- placing unfair and unnecessary expectations on ourselves and (even worse) those that we love. I forget all of this regularly (arg patterns are hard to break!) but my home life with Ri grounds me back into those values.

I want to wrap this post up with a story that illustrates all of these thoughts I am trying to express.

A few weeks back, Ri and I drove up to Mt. Hood so I could cross country ski around Trillium lake. After a lovely drive up the mountain, we turned into the unremarkable parking lot by the trailhead. Ri and Quill planned to stay in the van, so I got my boys all cozied up and took off on my adventure. Just as the snowflakes began to kiss my cheeks and the world fell silent, my mind perked up and became unnecessarily busy. It started with a tinge of guilt for leaving my guys back in that ugly parking lot. I could have at least has the foresight to drop them at the nice, warm, ski lodge up the road. Or better yet, why couldn’t they just be here by my side, I wondered? Quite quickly, some enticing plans began to develop…

It seemed to me that there was no reason couldn’t rig up some system to get Ri and Quill out here on this trail next time around. How hard could it be? I have seen those social media videos that all of you have seen with these paralyzed people pushing themselves to the limits, doing all kinds of adventurous stuff. Why not us?

And for a moment there, traveling down that wormhole, I almost missed the entire point. First of all, I had driven all this way to find some peace and quiet- so my brain had no place chattering on about these things. Secondly, Ri has expressed previously that he has no interest in these types of things- he is interested in being extremely kind to his body and doing things that make him feel cold or physically uncomfortable sucks the joy from his spirit. It seems that my self imposed guilt had taken me down a path that made no sense. Funny how we do that sometimes.

After a couple hours and a few wrong turns (it is a loop trail, people, so you figure that one out) I got back to the van. I open the door and there is Ri, snuggled up with a book, Quillie, snacks, and a blanket. Ri smiles this big, genuine smile and says to me (he always asks it the same way) “How was it? Did you have fun?” He was so happy. Just then I remembered what he told me the last time I left him in the van at the mountain- he loves it because it reminds him of his days as a filmmaker. That, apparently, was a lot of what filming skiers was about- hunkering down inside, watching the snow fall, and just kind of waiting for the weather to pass by so the filming could begin.

So, I am going to go out on a limb here and make the claim that Riley and I have indeed been skiing together. We ski together through stories of the past and we ski together in the here and now. I fill Ri in on every detail of my cross country adventures, and he tells me about the cute stuff Quill did while I was away and how much snow accumulated while I was gone. Sometimes I call or text him halfway through my journey, sometimes I take little videos so he can laugh at how truly minuscule the “massive” hill I went down was. I love this man. I love this life.

I know that there is a misconception out there. Some people think that having a physical disability (or being in a relationship with someone with a physical disability for that matter) means you will miss out on so much in life.

I believe that mentality runs the risk of missing out on the moments we actually have to live in this life. To be present, to deeply love, to observe this world with a slowness and a softness- this is the life that I have always wanted. I am so grateful to have found my way here.

Thank you all so much for reading my stories. I welcome all comments, questions, and opportunities to connect!

Warmly,

Andrea

, ,

Spinal Cord Injury Super Basics

Written by Andrea

Now I understand writers block. I sit down, intent to write, as per Ri’s suggestion, about caregiving for my boyfriend while on vacation in Hawaii. I write, then erase, write, then erase- if it were the olden days I would have accumulated a thousand crumpled pieces of paper around my desk by now. Then my AhHa moment came, and I concluded- none of this makes any sense unless you understand a little more about Riley, about spinal cord injuries, about why caring for a loved one is… complicated. So, I am going to write a little bit about that as it just feels like where I need to start.

medical-specialist-foramina-cervical-spine-superior-nuchal-line-inferior-mastoid-biology-study-process-styloid-transverrse-ligamenta_fotor

It does feels weird though, starting at the beginning, probably because I wasn’t there 8 years ago when Riley dislocated his neck at C 5/6 (conveniently circled in the picture above). I could never speak to the gravity of that situation. It would be 4 years until we met, and in between the life he had back then and the life he has now was that moment, as quick as the blink of an eye, really, that changed so much.

Ri’s dislocation caused immediate injury to his spinal cord – the very important and delicate bundle of nerves that carries impulses to and from the brain to the rest of the body. When the spinal cord experiences trauma, a loss of function, such as mobility &/or feeling can occur. Unfortunately, for over 5 million (!) people in the US of A alone (including my love), the consequence of the SCI (spinal cord injury) is paralysis.

In many SCI’s, the cord remains intact, but the damage still causes a loss of function (called an incomplete injury). Riley falls into this category and, because of this, he still has a good bit of sensation below his level of injury. This threw me off at first. Example- early on, I remember him commenting to me that one sock (underneath his pants and completely out of sight) was twisted and sagging. Say what?!?! Sure enough, his diagnosis was accurate and I was super impressed. I realize that sounds promising, but the day to day reality for Ri is that most of that sensation takes the shape of pain and discomfort that he can’t just walk off. I haven’t asked lately, but I bet he would say this is one of the most challenging aspect of his life in a wheelchair.

The Christopher and Dana Reeve Foundation provides a really great summary of a C5/6 injury. Riley falls somewhere in between these 2 descriptions:

  • C5 injuries often spare the control of shoulder and biceps, but there is not much control at the wrist or hand. Those at C5 can usually feed themselves and independently handle many activities of daily living.
  • C6 injuries generally allow wrist control, enough to be able to drive adaptive vehicles and handle personal hygiene, but those affected at this level often lack fine hand function.

You can check out this handy dandy myotome/dermatome man below for a visual. Essentially, the purple C5/6 regions are the space where things start to change for Ri. Anything below those lines is affected.

dermatomes_fotor

It probably goes without saying, and it feels really bizarre for me to write this, but the majority of Riley’s body is paralyzed. I totally see the other side though- can you believe everything one can do and experience from the chest up? Think about it- see, taste, hear, smell, speak, kiss, make love, breathe, think. And move. Riley can definitely move. His shoulder dancing is legendary (I would’t dare joke). But, reality is such that Ri does require the physical assistance of caregivers/personal care assistants (PCA’s) to get up and on his way in this world.

Currently, Ri employs 4 PCA’s. Most days, our home is buzz buzz buzzing with activity. Someone arrives at our house before the sun even rises (we never set an alarm clock and instead wake to a gentle tapping on our bedroom door- a method that is 95% reliable). They first assist Ri with things that we might not even realize we do when we wake up- roll over in bed or take a sip of water, as an example. Then, this whole morning routine begins. The PCA helps Ri get up and on his commode (to do the morning business). They assist with showering, dressing and then they drive Ri off to work. In the early evening, he is picked up at work and then his PCA helps him around the house and eventually into bed. That’s 15+ hours of “being on” each day, you guys. By the end of the week, we all need a break, so I help Ri quite a bit throughout the weekend.

After much trial and error, that is our current homeostasis. It will change again soon- it always does. I have been asked, many times, what it is like always having someone around, observing your relationship and lifestyle. This has probably been an evolution, but at this point I would say we just really don’t care. We are committed to providing a solid work environment for the PCA’s, but outside of that we go about our normal home life.

I want to tell you one thing about me, though, since we are all getting to know each other. Admittedly, I have a caregiver-y side to my personality that I work to keep in check. Why? Because I NEVER EVER want Ri to wake up one morning, look left and realize that his girlfriend has transformed into his caregiver. Don’t get me wrong- I do help Riley with his care, but I am mindful not to over help, not to over insert myself into his intimate business in ways that would compromise our romantic partnership. I adore being adored by that man, and I admire how large, in charge and directive Ri is about his care and his life in general- I have no interest in stripping him of that autonomy. What I will do, though, is know his care like the back of my hand, totally step in as necessary and within my limits, and train each caregiver to the point of obsession so Ri and I can have peace of mind. I also need a lot of sleep to keep my head on straight, but that is more a side comment.

As for the Hawaii trip, my caregirlfriending was a true experiment and I really will share more about that soon.

But in the meantime, please oh please let me know-  Is any of this remotely interesting? Should I continue this blogging journey? I am feeling vulnerable and need input, ideas, whatever you got just give it to me straight!

I also want to say that this is, no doubt, an oversimplified blurb about spinal cord injuries. Good places to read more include:

christopherreeve.org   &/or   The Shepherd Center

Thanks and love!~~~~A

 

 

, ,

Accessible Vaycay Hawaii Style

 

img_3009Written by Andrea

Winter in the Pacific Northwest gets tough, you guys. So cold. So wet. No sun. Why do we live in Portland again? Check back late spring and I will remember once again :).

At some point mid winter, it just became clear- Ri and I needed the warmth of a tropical breeze to dry out our water logged bodies. We craved Vitamin D -straight up from the sun. We required vaycay.

So, we booked a trip to Maui with friends. This was a big deal for 3 main reasons.

  1. We had never taken a tropical vacation together.
  2. We had never taken a tropical vacation with friends.
  3. We decided to do this tropical vacation sans caregiver, meaning Ri and I were a team on all fronts.

I want to tell you something about Riley- he is a travel prep pro. My boyfriend keeps a grand master list of every possible item we need to consider/bring when traveling + he keeps a prepackaged travel bag filled with extra medical supplies, a travel sling and more. Check, Check and Check!

Add to that, Ri and our travel pal sourced an awesomely accessible accommodation, along with a ramp van and a hoyer lift, so we had every controllable aspect of the trip set up beforehand with, quite honestly, little to no effort on my part! I, you see, was conserving my energy in preparation for the actual trip, when, you know, all the uncontrollable stuff starts to happen. Which, if you have ever travelled, you know is inevitable.

We had  fair amount of that stuff hit us on this particular vacation. Flight delays, rain, food poisoning, pain, sleep disturbances…that all happened. But, all of those things were just speed bumps along the way. Outside of the bumps, we made some kick ass memories with really great friends, Ri and I went swimming together for the first time ever, and we watched the sunset over the ocean every evening. We relaxed, we read, we soaked up the sun. We did Maui and it was really nice to get away.

I was hoping to share a few wheelchair savvy travel tips throughout this post, but all I can say about that is – talk to Ri, he has it down. I do have some general travel tips though, which I have realized apply equally as well to general life as they do to travel (darn, I guess vaycay is still real life). Either way, enjoy!

Here are my travel tips-

  • Be smart, be prepared, and only do what your body and mind are up for.
  • Don’t push yourself! Duh, you are on vacation.
  • Accept that in between all of the wonderful moments of travel/life there will be a bit of nonsense, chaos, and well, hard shit. This is the adventurous part of the trip (life) and you will either laugh about this stuff down the road or they will help define and shape the person that you will become.
  • Get a lot of sleep. Like, a lot of sleep. More than you think you need. Oh, and drink a lot of water. But not right before you sleep.

I want to give a big shout out to the Hyatt Residence Club at Kaanapali Beach. It is a fabulous option for anyone with mobility issues, or anyone who just wants to relax to the max.

Lastly,  Ri suggested I write another blurb about my experience with the whole caregiving side of the trip. So, stay tuned for Part 2 of this post, examining the juxtaposition that is Caregiving (or as I prefer- Care-girlfriending) While on Vacation.

Mahalo.

, ,

Poor House Video Tour!

Written by Drea

Welcome to our ever evolving Wheelchair Accessible Ranch Home!

Thanks to LineSync Architecture (Ri’s godparents and the architects behind the initial house remodel- we Love you Joseph & Julie!) we have a video (circa 2015) that highlights some of the accessible stuff around the Poor House. Fun!!!

While we are talking Poor House remodeling projects, boy oh boy I just can’t wrap my head around HOW MUCH has changed around here since this video was made… and I can’t wait to show you!!

So please stay tuned for more updates on all of the Poor Family projects and remodeling fun happening over at our place in Portland, Oregon!

Thanks for viewing!

 

Who We are and Why We are Here

Written by Drea 

Poor House Love is a blog about, you guessed it, LOVE!

Andrea and Riley met a few years back and have been building a life together ever since.

Riley is paralyzed from the chest down, though you might not realize that right away because he is impressively agile. He uses a wheelchair for mobility and has caregivers assist him around our home with their extra set of hands. While our love is extraordinary, our life is, well, actually quite ordinary (in a good way). So we often wonder- Why is it that so many people, perfect strangers, even, love to ask us questions about this love life of ours? People seem SO curious!

So, here we are. Baring it all on the world wide web! By sharing bits and pieces of our story, we aim to show that love comes straight from the heart, and has neither rules nor barriers. We are here to share the joys and the triumphs, as well as the hard times. We are here to be real and in between all of the talk about wheelchair/paralysis stuff, you can find posts sharing our love for accessible design, cooking, nutrition, gardening, action sports, and more.

Thanks for checking us out! Please Like, Comment, and Follow us on our journey!

riandi