(Not a) Damsel in Distress

"I'm a damsel, I'm in distress, I can handle this."

-Meg (Disney's Hercules)

Something happened yesterday that was a new experience. My wheelchair broke on me. I should clarify that my wheelchair broke on me while I was ass high up in the air. You see... I was trying out the tilt feature on my chair as I've only used it for little tilts, not mega tilts and I wanted to see how far it would go. I felt like I stopped it even before the max limit. I laughed with my mom as I laid there, until I realized I was really stuck.

My mind quickly went into problem solving mode. I'm the girl you want with you in an emergency. I realized I couldn't do anything about the situation laying on my back like that. So I asked my mom to help me get out by removing the side arm and letting me brace myself on her arm. Fortunately I have legs that go on for miles, so I was able to very carefully shift to the side and wiggle my way down. I was up very high, so I was ultra careful. I moved gingerly to keep my center of gravity in the middle of the chair as it could very easily tip over.

Like a wounded ninja I slunk out of my beloved Dory and made it safely to the ground. Step one was complete. I knew it was some kind of mechanical error because the control panel would switch on, but just stay on the home screen. I had no control over it and could only switch it off and on. My first thought was to try and reboot the electronics, but I had no idea how to do that. I started looking for some kind of button, or way to unplug it from the battery. 

Failing both of those I knew I had to call my wheelchair company. My dead phone disagreed with that decision. Mom to the rescue again! Thank God I wasn't alone. I would have just been laying there calling for help. And thank goodness I still had some mobility. I don't relish being rescued by the fire department. 

First I called the main number, then I was transferred to my local servicer, then to the voice mail of my "service manager." Not to be waylaid I called the local number again and this time I reached her. Then I was transferred to the main corporate service department for tech help. The "expert" had us install an app so he could see the "problem" via live video. Now I was hoping for some actual help! Uhhhh... no. The guy told us about the "secret button" to restart it, but it didn't work. (But now I know where it is.) As I was on another long hold I was examining Dory and seeing what could have gone wrong. Then I saw it.

Right in front of me I saw the hinge that rotates when the chair tips back. Pinched in that hinge was the small, black power cable that connects to my control box. The cable was pulled tight and right away I knew what happened. The cable became caught in that hinge when I was tilting back and the more I tipped the tighter it was pulled. EUREKA! But when the tech got back on the line he sounded dubious and doubtful. He put me on hold again. My mother and I figured out a way that we could create a little slack on the cable by lowering the arm rest and turning the control box to the side. It worked! We had enough slack on the cable that it came out of the hinge.

I tried turning the chair back on and nothing happened. I turned it back off and rubbled the cable a little where it was pinched. I think we all deserve a nice rub after a traumatic experience. Well, I must have magic hands just like my husband because Dory turned right on and I had controls back. "Mr. No Help" came back on the line and I explained what just happened. He acted like that was the end of the call. I told him directly that I would be needing a service visit and a new cable because this one was obviously now compromised. "Oh... Ok" was all he said. (Jesus give me strength!)

So with zero help from my wheelchair company I discovered the problem and fixed my chair myself. Jeeeeeeeze. I won't bore you with more details of what happened this morning when it looked like Dory wasn't charging, but suffice to say that I'm getting a loner chair delivered in 3 days while a new controller with cable is being ordered.

I felt horrible for people with no mobility who really would have been stranded. And why had my 60K chair not worked 100% right the first time I used tilt? I JUST had work done on it. It should have been tip-top. And what about people who aren't skilled at getting what they need over other phone? Or who just don't have the energy to be persistent? Or who don't have a strong Mama with a full phone right there? Or who can't afford a 60K chair to have it break down on them in the first place?

Disability is hard enough not to add cruddy companies on top of it. I shouldn't have had to find the problem and fix it myself. They should have not screwed up when putting my chair together so it would happen in the first place. 

People have an emergency number to call if their car breaks down, so why not an even more important mobility device? Why aren't they insured by the companies who provide them (at an insane cost I might add.) 

The more I live my life as a disabled woman, the angrier I get at our broken system. At people parking in the disabled van spot. At the lack of affordable equipment for people who need it. At the crazy long waits to get anything done on repairs. At the total lack of any oversight and quality control. At the lack of accessibility and representation I see everywhere. I wish I had more spoons to actively fight these injustices. 

My mobility history

My electric wheelchair "Dory" just had her latest round of updates. She got a new battery, new battery cables, new smaller seat pan and a new cushion. During the update before that they installed the equipment needed to make her tilt on command, installed leg abductors (to help keep my knees together) and a taller headrest. As my needs change, so she changes with me. 

These changes got me thinking about my history of mobility aides and all that I've been through in just two short years. 

"Meg" was around $120

I remember the day that I knew I needed mobility help. I was with my family in IKEA and I just couldn't keep up with all the walking. Instead I went from chair to chair resting as much as I could. I felt horrible and I knew there was something seriously wrong with me. I was right! Not only did I have Metabolic Myopathy at the time, but I also had a brain tumor. 

I shared with my husband that I needed a walker with a seat and we bought "Meg" that weekend. I still use her, but mostly for watering my plants or brining things inside my house from my car on my own.

"Shirley" was around $100

I bought this wheelchair on my own for bigger outings like going to an art gallery or being out all day. I still remember it getting stuck in an antique store and my husband accidentally almost dumping me out of it. Hahah! "Shirley" sucked going over anything other than smooth cement.

She was light enough for me to push myself and almost use her light a second rollator. She also collapsed and fit in our car nicely. She wasn't comfortable to sit in for very long though and really was made to "transport" people inside their homes or a hospital.

I still have her, but I will happily give her to someone who needs a transport chair.

"Dory" was $16K (but insurance covered it)

Getting my insurance company to pay for my electric wheelchair wasn't easy. UNTIL I was diagnosed with a brain tumor, then it went pretty quick. I got my chair "Dory" one month after my brain surgery. You can see that by the time I got her I was happy to have a new tool of independence. I still remember the feeling of climbing in and taking right off. The feeling of freedom and independence!

"Arial" was $3k

"Ariel" is my travel wheelchair. At the time my company was planning a trip to Hawaii in January and I needed an electric wheelchair. I also thought my husband and I might be able to travel more in the future. She is an incredible chair for travel.

Ariel was essential for the years that we didn't have a wheelchair van. At just 55lbs both my husband and son could get it in and out of our regular car trunk. Now that we have our van "Pablo" I keep her at my Mom's house as a backup.

"Pablo" was $61K

And here is our biggest tool yet. Our wheelchair van "Pablo". Having him enables me to always use Dory. It also gives me independence where I don't need my son or husband with me all the time to get my chair in and out of the car for me. 

Dory is the only thing our insurance has covered. Being disabled is insanely expensive. I'm very grateful to have a good primary care doctor who fights for me and a husband with a good job who knows how important it is that I have the right tools. 

How Dory looks today.

Current modifications around another $30K

(covered by insurance)

Why I love my wheelchair

I used to feel bad for people "in a wheelchair". When I was a healthy, able bodied person I had that common thought that people were "confined to" or "trapped by" their chairs. But as my mobility and strength worsened and I had to start to use mobility aides myself, I began to realize what I think all disabled people already knew all along. None of these tools are traps. None of them are confining or something to be pitied. For me they all represent freedom. Especially my wheelchair.

My mother was commenting the other day how I've always done things fast. Walk fast, eat fast, finish tasks fast, clean fast... That's very true. My son and I both walk very fast and have very long legs. My husband (whose the shortest one in the family) was constantly struggling to keep up. Until my mobility became a challenge. Then of course everyone was waiting on me. My chair gave me back that sense of freedom and independence, but it also gave me something else. SPEED!

I didn't even realize "going fast" was at all something I was missing. My husband will confirm that I used to not enjoy going for walks because it was too slow of a mode of transportation for me. I still remember the first time I sat in my chair and zipped down the street that thrill that I had in my chest. It was the same feeling as a little kid zooming downhill on their bike. And every time I'm alone and get to go fast in my chair out in nature I feel that same thrill.

For me my chair means independence. It's a physical extension of my body. It's nothing I'm "confined to" but rather something I'm fortunate to have! That's also why I like to name my mobility tools. Because to me they're much more than tools. They're blessings.

Priority Parking for Pablo!

Today is a big day. My first ever disabled parking plates came for Pablo. It was exactly in May 2018 when I first got my temporary parking permit... so why am I happy about this?

What's most exciting about having a "blue plate special" (as I now think of it) is I don't have to remember that fricken badge! No more taking it off and on, switching cars, forgetting it in the wrong car (always horrible). Nope. Now it's just goooooo!!! Which is the whole point of Pablo anyway. 

But it is interesting how quickly emotions change. My husband and I were just talking about this the other day. How we both remember what a big deal it was when I decided I needed a walker, now here we are with a wheelchair van. The same is true for the parking badges. I remember it being a really big deal to talk to my doctor about it the first time, now here I am with a "DP" (disabled plate). 

I'm very happy that things don't remain a "big deal" for very long. That we become more fearless and just move on with the joy of living instead of freaking out over small things like mobility aides and "blue badges" (as my mother calls them). Anything to help me live a big, full life is wonderful and very welcome!

All in a year

I started this blog just a tiny bit over a year ago. Reading my first post I shook my head in disbelief at all that's happened since I wrote that. I had no answers at the time. I just knew that something was very wrong with my body and I was struggling to get the help that I needed. Oh how right I was! And luckily for me that help did come. 

A year ago I said "my body just decided not to be doing so well"  that could have been the biggest understatement of my life. In fact I'm sure it was. What was really going on was: 1) I had a benign meningioma brain tumor growing in my left temporal lobe. 2) I have Rheumatoid Arthritis. 3) I have a genetic disease called Metabolic Myopathy. Soon after that post my muscles would begin failing me and it remained a mystery till November just what was going on. 

Reading over my frustrations, anger, hope, struggles and yes... fears I feel nothing but empathy for myself. Frankly I still can't believe that I went through brain surgery just seven months ago and have metal plates and screws in my skull. It's hard for me to wrap my mind around (pun intended.) Or that I'm technically also a mutant with my mutated genes causing the metabolic myopathy. I mean really? Was the TB just not a big enough of a deal?

I still feel like if people knew the whole story of what I've been through in the last four years they would think I was making it up. It's just too fantastic that someone can go through everything I've been through health wise. I fear they would think I'm faking it or lying. But it's all true. And I'm still here.

That's the best part. I'm honestly happier than I was four years ago. I'm also a better person. I'm less judgemental, more fearless, more forgiving, more patient and more empathetic than I was four years ago. I think great suffering is like that. Either you give in and struggle in the darkness full of fear for your life or you embrace the wonder that is our time here. See the miracles all around and love till your heart just can't love anymore. I chose the second one. 

I have my family, I have my tools, I have my spirit and my body is still here doing the best that it can each day. That's pretty magical really. I'm one lucky woman!

More Testing

Spring officially begins this Wednesday, but it has been in my neighborhood for a few weeks now. Last week I took a few minutes off at work to roll around our complex and soak in some sunshine. Of course I couldn't resist picking this lovely sweet smelling dandelion for my hair. I forgot it was there and by the end of the day it looked like a dead bug crawling above my ear. Hah!

Friday I had three doctors appointment. One was a pre-op for my thigh muscle biopsy and the other two were for my heart. I was having some scary issues crop up, but since increasing my Q10 dose they had gone away. My PCP made me go through with the testing anyway.

In spite of (or because of) my busy day I found the time to get my nails done. It has been a nice little treat and a good way to spoil my body. Keeping body positive is important when struggling with a chronic illness, at least for me.

I told the echocardiogram tech that I was nervous about the scan since the last time I had any major testing they found a brain tumor. She assured me that she wouldn't find a brain tumor.

Apparently I have a big tough heart. I could have told them that!
In all seriousness, I won't know what this means till they get the results of the 24hr halter test back. And the cherry on top was I was allergic to the adhesive pads they put the EKG monitors on with. Hello raw skin and rash! -sigh- 

But nothing lifts my spirit quicker than a little snuggle time with my 12yo Whipped Terrier mix "Sweetie."

With my increased strength and stamina I've also been out gardening again with my husband. It feels so fantastic to be productive, instead of just watching him do everything.

I also decided to buy myself a cane. It was the one piece of mobility equipment I didn't have. I had been using my Nordic Poles as a walking stick and they're great in the garden or off-roading. But for just help with balance and stamina in say a store or going down the street they didn't have the stability that a cane offers. They're also a bit hard on my hands.

This cane is adjustable with a big, squishy handle. And doesn't it look like a mermaid tail? I'm hoping I can use her at work and short distances, Meg my rollator for medium and Ariel my electric chair for far distances and out all day situations. Time will tell!

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. 

Holiday Week In Pictures

Hello friends and happy holidays! I've been wanting to post this blog of "pictures from my week" for a few days now. But you know... holidays. Here's a bit of a photo montage of what my week leading up to Christmas was like. Just a taste if you will. I hope you find it fun and helpful.

I do have a few outside links to items if you click on some pictures, but once again I received NO kick back or incentive for doing so. I just like to share helpful information.