First Time

Monday was the first time in about eight years that I drove a fair distance. I took my son to the beach town of Sausalito, about a 90 minute drive from our home.

Growing up my son and I would take trips together frequently during the summer. My husband was always working hard to support us and so I could stay home and be a full time parent. That meant it was usually just the two of us during school brakes. We even drove to Los Angeles together, about 7 hours from our house. 

I always enjoyed these day trips with my son. We were adventure buddies and built great memories. 

Now he is 31, but he also lives very close, doesn't have a partner and doesn't drive. He doesn't leave town unless we take him somewhere. We try and do that a few times a year and he always enjoys it. But it isn't the same as it just being the two of us.

That's why Monday was so special. I was giddy to be able to be so physical. We hiked the blustery beach, walked to an old military bunker, and climbed some steep, old, cement stairs. Things I could never even imagine doing a few months ago. Bodies are so amazing. Our ability to heal and recover. 

I feel so alive right now. Like each moment is a juicy peach and I'm just savoring all I can. Each second I'm able to walk, bike, run, swim, climb is an enormous gift. One I never thought I would be able to enjoy again. I have gratitude and love in my heart to the universe for its magical, unpredictable ways.

First Day Working in a Wheelchair

Despite having the Chief of Staff as my personal Neurologist from a world class health organization, my suspected Mitochondrial Myopathy remains un-daunted in her course of destruction. I've been trying different coenzymes and amino acids along with electrolyte water, but so far there's no difference.

Last Thursday I pushed my walking abilities a too far and feel like I never recovered from it. My legs feel much worse. Monday at work I "pushed through it" like stubborn people seem to do much too often. Tuesday I used "Meg" my wonderful rollator. But by Wednesday even she wasn't cutting it. The big problem in my office isn't really getting from A to B. It's all the chatting that seems to happen between or at those points. In my job that "chatting" is really important, but it's physical torture. Sure I can sit on Meg when someone starts to talk to me, but then I'm up again to finish what I was doing. Then all the sitting, pushing and getting up and down is just too much for my poor muscles.

Wednesday was hard for me. Wednesday night I came home and had a good cry. I was angry that my neurologist hasn't gotten back to me, angry that my medications aren't helping, angry that now my eye muscles seem to be straining and weakening, angry that I felt like I wouldn't be ok at work unless I used my chair. And frustrated. And upset. And sad. And...

(Smile girl!)

I told my husband that every single aspect of my life is now not only affected by my health struggles, but I have to think about it every second of every day. "Can I stand that long? Can I walk that far? Can I fit through there? Is it accessible?" From work to shopping to "fun" outings to sex there isn't one part of my life that isn't now touched by this. And it sucks. And I'm mad. 

I actually don't take comfort in knowing there are 650 million people in the world with disabilities. I wouldn't wish this on anyone. Our world is not made for us. For the "different." As anyone with Autism or who is a Little Person can tell you. We are a "one size fits all" culture and that size better also be 100% healthy and move on 2 legs. It's makes no sense. 

But now for some some positives. I'm very fortunate that where I work is super supportive and the office is about 95% accessible. Also the job I do I can do without any modifications at all from a wheelchair. No problem-o. My clients did look surprised and asked if I was "ok" but I'm pretty used to that from pushing Meg around. I also welcome questions and am very open. So Thursday Ariel came to work with me. And like every time I finally use my mobility devices, my life became worlds easier. I was in much less pain and my muscles thanked me for using my brain and my tools. 

My plan is to get Dory to my office (somehow) over the weekend and leave her there. She will then become my "work chair" and Ariel will be my home and "out and about" chair. It will work great if I can just get her there. I know Uber does have wheelchair service, but might not in my area. The public bus is my last resort simply because that will be super stressful and I've never done it in a chair before. 

I'm convinced life is nothing but a series of unpredictable events. You can make plans and think you know what's going on, but she likes surprises! I'm just trying to be mindful and focus on each day as it comes and what I need that day to enjoy it as much as I can. 

My Hopes Are HIGH!

I got some awesome sauce news just now. (My doctor puts the "awesome" in the sauce.) 

"I received the wheelchair evaluation from physical therapy and will send you a copy in the mail. Please send me the information on the electric wheelchair and I will complete order.
Sincerely,
Your Awesome Doctor"

Ok, I might have added that signature. But it's not like I'm sharing his name with the world! Then you'll all want him and he'll be too booked to see me. I'm selfish like that. Don't like to share. Only child and all that jazz.

With any luck in a few months this little baby will be mine.

It's a "Fold and Go"

"But why this particular chair?" You may be asking. Well... The company is headed by a woman with RA who couldn't find a good electric chair to fit her needs, so she made one! Then turned it into a company. Let's start there. Also it's much lighter than other electric chairs (about 50 lbs) and folds down to fit in a regular car trunk. No van or hitch required. This baby is made for adventure! It can take inclines and bad weather like few other chairs can, especially in that price range.

I'm also not a... um... "petite" young thing and this chair is made for someone my size. YAY! Let the adventures begin!

Also in "big news this week" I ordered my first medical ID bracelet. It's something that's been in the back of my mind for a while, but my muscle weakness seemed to have taken a turn for the worse this week and that spurred me into action.

After a ton of searching I settled on this.

Pretty, but still looks like what it is. That was important to me.

Don't want to ERT to just think it's jewelry!

My job can be a bit risky. I work with a lot of different people and unpredictable situations can happen. Also I don't trust my own body right now AND I love to travel. So I thought it would be best to err on the side of caution and be prepared.

I know some people just use the Emergency ID Card on their smart phones. But honestly I don't think the ERT is going to be checking my phone while I'm laying unconscious from a bad fall or crisis. Nothing wrong with going old school when it comes to your health and treatment.

I had mine engraved with:

Muscle Weakness

Mobility Issues

RA/Asthma/PNP

ICE: husband's phone number

Did you know that ICE means "In Case of Emergency?" I saw it on a lot of medical sites and never knew what it meant. You're welcome. Also PNP means "Peripheral Neuropathy." I also had to look that up because the whole word wouldn't fit. 

Now if I tumble and conk my melon the responders will know why. Although nothing on my bracelet is life or death information like it is for some people, it's also important for anyone trying to help me to know if I'm in a situation where I can't speak for myself. 

My fingers are crossed for the wheelchair being approved with my insurance. It feels a bit like a message in a bottle that just got launched.