Meet Pablo

Four days ago we pulled the trigger and bought a wheelchair van. Not just any wheelchair van though. This thing is a fricken rocket ship! I'd like you to meet... Pablo!

Pablo is a 2017 Chrysler Pacifica Touring Limited Plus with only 4,500 miles. He comes with a Braun electric fold out ramp, light sand colored leather seats that are heated, heated steering wheel, automatic lowering capabilities, back up camera, satellite navigation system, blu ray players front and back and (my husband's favorite feature) climate control for each section of the car front and back. That means I can have my side at 60 and he can have his side at 80. Win-win. Also our 6'4 son finally has plenty of leg room in the back seat. "And I even like the color" (Indiana Jones joke).

We'd been looking and thinking about a van for almost six months. There was a lot to learn and next to our house it was the biggest purchase we'd ever made. 

There are plenty of disabled people who live out their lives without a wheelchair van, so why did I feel like I NEEDED one? I am a tall, large lady. I have a tall, large wheelchair that is built to accommodate me. Yes, I also have a travel wheelchair, but it gets uncomfortable quickly. And given I'm already in constant pain it is important to be to be as comfortable as I can (enter the seat heaters). My big wheelchair makes me much more comfortable and I can't use it without a van or a bus. The bus doesn't go everywhere I need/want to go when I want to go there. My town is small and I can go out in just my chair a lot of the time, but not everywhere and only when the weather is good.

Also, my husband and I enjoy going on adventures. I'm hoping in the future more of those adventures can include road trips. There may come a time where I am only able to transfer in and out of my chair minimally and not walk much at all. I like being prepared and not having things like that sneak up on me. In Pablo we can keep the adventures coming for years and years no mater my mobility status. Even if I'm completely immobile actually, which is really fantastic!

And yes, a lot of disabled people don't have a van, but they also don't have anyone to drive it for them. In fact a lot of them end up becoming "house bound" which is a horrible, but understandable situation. Options outside of your own van really stink and aren't free (much to able bodied people's shock). And even being driven around can be exhausting. So a lot of the time people just end up staying home. 

No matter how severe my mobility issues get I refuse to have that happen to me. I will nap when I need to, sure! But I will get out and be a part of the world and let the world be a part of me. 

Depression and Chronic Illness

I don't like the term "Big Black Dog" for depression. Dogs are loyal and funny and awesome. All they want is tummy rubs and bacon. Depression wants your joy, your playfulness and your hope. Not the same thing at all.

I've been struggling with depression the last few days. It all just feels like a lot going on all at once. Losing my job and starting Plaquenil (after the RA diagnosis) has just left me worn out. It's not just being laid off either, but the entire agency I work at is shutting down. So there's been a lot of miscommunication and uncertainty creating a ton of extra stress. And then there's trying to do what's best for my clients and make their transition as easy as I can. No wonder I woke up with a major flair the other day.

Despite feeling completely overwhelmed, depressed, angry, sad, upset and even hopeless at times, there are a few things that help me.

#1) HUMOR!

My favorite shark "Bruce" taking a night time sip from MY Disney Frozen cup.

Yeah, that's right. I own a stuffed shark AND a Disney cup.

You should try it. It helps. 

Humor is a HUGE part of my relationship with both my husband and my son. We make up funny songs, send each other silly memes and joke around a lot. Depression hates laughter. So watching a funny movie or TV show, or just spending time being child-like is incredibly helpful for me when I feel depressed and hopeless.

#2) Writing or Drawing about my feelings

My journal is a great place to get out feelings like these.

Some days are worse than others.
Monday was a bad day.

Sometimes I don't want to share my feelings with another person. But it does feel good for me to get them out. My journal is an important part of doing that for me. In it I can be funny, encouraging and hopeful. But I can also vent some darker thoughts as well.

#3) Being pro-active

My new jammie rack

A helpful way that I deal with any new situation, especially a stressful one (or one that can feel overwhelming) is by taking action. As I adjust to what it means to have RA and peripheral neuropathy I learn what's good and helpful for my body and what's hard and damaging. 

For example, digging through the freezer with bare hands? Bad. Holding cold things. Bad. Trying to pry open the drawer of our 1950's dresser every night to get my pajamas out? Bad. Going barefoot all the time? Bad.

Soooo... last night I took everything out of my "super hard to open" dresser and hung them on this wall hook behind the door instead. Now everything's eye level and easy to get to (and put away.) And my husband gained another drawer. Win-win. And since this is behind our door and we keep the door open almost all the time, you don't even see it. Problem solving at its finest!

This gives me a sense of accomplishment and taking care of myself, both of which Depression hates. Almost as much as it hates a sparkly Disney cup.