Meet Evangeline!

Introducing my newest wheelchair "Evangeline!" She and I have gotten off to a rocky start. She was given to me (thank you health insurance) the week of Christmas 2022. I've had her six months, but she and I are only just now getting along.

What happened?

I'll tell you all about it.

See... she is FANCY. I was intimidated the second I sat on her. She can move in any and all directions from zero gravity to six feet in the air. Working her controls feels like you're working a forklift. She's very complex.

She also doesn't like rough terrain. She likes smooth, even pavement. No grass, dirt, mulch, rocks, tips or anything other than flat and hard. Honestly I think she was made for Las Vegas or shopping. She's not an adventure girl. She's your Jimmy Chu shoes.

Then there was the error code.

Any time I tried to use her lift or tilt features I would get a flashing error code. I have had her serviced five times already and a part replaced once. Another part is on the way to be replaced as I type. She's a finicky Swede. Yes. She's made in Sweden. 

It's like a car. The more complicated it is the more that can go wrong.

Then there was the incident that happened on vacation.

I thought I could roll down a very steep, slightly slanted driveway and be ok. I was not ok. Evangeline locked her tires and I slid down the driveway and into the street. Luckily there were no cars at the time, but I did throw off a touring group of bikers and made one tip over. She doesn't like uneven surfaces. FLAT! FLAT GROUND ONLY!

My repair guy said "yeah. There's no way you were going to make that. Maybe next time circle back and avoid doing that." Thanks dude. Super helpful.

So she and I have had a challenging relationship.

However...

She's also really amazing. And pretty. And comfortable. She can adjust to me in any way. And I love the lift function (when it works). I always get comments and questions. Most people haven't seen a chair that could lift up as it's still a pretty new feature.

I just had to learn to get comfortable driving her and she had to be adjusted quite a bit to fit my needs. I think we're almost there. And I always have Dory for adventures.

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)

What's New?

This time last year I was responding well to my Mito Cocktail. I had a real increase in energy and stamina. I suspect what happened with the Mito Cocktail is that my body just adjusted to it and it stopped working as well. 

That happens to everyone with almost all medications, even recreational drugs. I'm no longer taking the Idebeone. I tried it for three weeks and it didn't work for me. I had an increase in cramping, spasms and muscle pain, plus it upset my stomach. So two weeks ago I went back to my COQ10 and I feel like I'm still adjusting.

I continue to be less fearful than a year ago and am still rocking a bikini. I also take care of my "tasks of daily living" independently. I even made a quick store trip with my son yesterday, just the two of us. That felt really good.

As far as medications go, here's what I'm currently taking:

Prescriptions Taking

LevoTHYROxine 125 mcg AM

(Pregabalin) Lyrica 150 mg BID

(Duloxetine) Cymbalta 60 mg PM

(Lioresal) Baclofen 20 mg TID

Albuterol Inhaler PRN (apx 6 puffs spread out daily)

PRN

Acetaminophen 500mg +2 PRN

(Rizatriptan) Maxalt-MLT 10mg PRN

Albuterol Nebulizer (DME) PRN (not used yet)

5:1 (CBD:THC) Tincture or Edible PRN

Supplements

COQ10 300mg 5x a day (1,500mg total)

L-Arginine 500mg AM

Vit. D3 2,000IU AM

Wild Alaskan Fish Oil 1,400mg BID AM/PM

Biotin 1,000mcg AM

Magnesium Citrate 250mg BID AM/PM
Potassium 99mg BID AM/PM

MigreLief supplement BID AM/PM

B-2 400mg

Magnesium (citrate and oxide) 360mg

Feverfew (whole leaf & extract) 100mg

I have a fantastic A Team behind me now including multiple people who know about Metabolic/Mitochondrial Myopathy. My neuro muscular specialist just suggested I try epicatechin to see if it helps my muscles at all. She said there's some good results with it helping protect the heart of people with MD. I will give it a try since it's an over the counter supplement.

She also reminded me about the muscular benefits of Epsom Salt Baths. It's not easy for me to get in and out of the tub, but it is possible. I will try and add these to my regular routine as well. We have a big bag of it from Costco.

The biggest news for this month is I got adjustments for my big chair "Dory". I got a new seat, new headreast and (*insert drum roll here*) KNEE ABDUCTORS! That's a huge deal. No more leg straps for me!

Also fantastic is that she's on a bit of a tilt back so I don't slump over myself when my trunk muscles fatigue. Stamina is not my friend.

"But what about Plan Kick Ass?" 

I've integrated a lot of it into my daily life. I try and eat more fish and veg then I do land animals. I move as much as I can and in general make my health a priority. Of course I still have things that aren't the best for me, but I try and notice how food makes me feel after I eat and stick to the things that make me feel good.

Here's some things I'd like to change, work on for the future:

• Stretch twice daily
• Take Epsom Salt baths
• Try the epichatechin
• Explore CBD more
• Go back to smoothies every morning

Lastly what's new with me is that I'm trying some high CBD, low THC products to help with pain and muscle cramps/spasms issues. I don't like taking Acetaminophen for pain all of the time and I don't think it honestly helps that much anyway. It's hard on my liver and kidneys and can cause stomach irritation if I take it too often. I feel there's less of a physical risk to my health taking a more natural product. So far I have tried oils, tinctures and gummies. It's legal in my state and very available. I'm open to trying almost anything that could improve my quality of life.

So that's where I'm at medically right now. Taking things day by day and focusing on the positive. I'm keeping connected with my friends from my Muscular Dystrophy support group and family. That's always helpful for keeping my mood up. And my mom has been stuffing me full of delicious foods. I try and get outside to get some sunshine when I can. Now I'm off to make a smoothie!

Daily Rhythm

After all of the holidays, my mom's birthday, my birthday, my son's birthday, I think I have something of a daily rhythm forming and it's really helpful.

I start my day off with a cup of coffee and a hand full of pills, like most Americans, but especially those with any kind of chronic illness/disability. 

Then I spend about 30minutes on some kind of household chore while I have the spoons. Laundry, dishes that kind of thing. After that I move into computer work. These days it's compiling my medical files for SSDI appeal of denial. 

Now I have all my relevant medical records on my hard drive and on my Google drive. There my mom and a family friend who is a PCP can both easily access my files and give me feedback if they notice something missing. AND if anything ever happens to my computer it's all backed up and organized. 

I have some other things in the work as far as SSDI goes, but it requires me leaving the house and is more complicated. It also requires more spoons. This is something I can do bit by bit every morning.

After that I eat something. Usually a banana, but sometimes avocado toast. Or sometimes it's actually lunch time and I have some kind of fish. I shower after I get my grub on.

When I emerge all soft and shiny fresh I usually switch gears and move onto something creative or go on a small errand or adventure with Sweetie and my Mom. Yesterday was rare in that I had the spoons for both. 

My Mom came over and while she was on an important phone call I made my FAVORITE dessert and something I was craving, rice krispy treats. Yes, it is hard for me to make, but it's a challenge I can still do. 

After her call we took my 13 year old "puppy" Sweetie out to our local Arboritum for a very short walk (Mom) roll (me). It was the first time Mom got to drive Pablo. She's in love.

After that the rest of my day is devoted to napping. Then my husband is home from work and the Man Cub is home from college. We all have dinner, watch a show and it's bed time. And no, I have no trouble taking a 2-3 hour nap and going to bed for the night soon after. Not. At. All. 

Not every day follows this flow 100%. Sometimes my Mom comes over in the morning and we spend the whole day together. Other times I don't see her at all and I do my own thing the whole day and maybe roll Sweetie on my own around my neighborhood. But a typical day is tending to follow this pattern and I love it.

Today I have my second cement person coming out. I hope it goes better than the first who totally flaked on me. I'm starting to feel a little more settled in my daily rhythms and even though I'm still struggling a lot with pain, fatigue, dizziness and other issues it does bring me a new feeling of calm that I welcome with open arms.

Why it's easier to just stay home

My husband and I went out to see friends last night. They're good friends, but friends we have a hobby in common with and see about once a month if we can. I had tried to save up my spoons and had a good nap. I dressed up nice and we took Pablo out with Dory so I felt all spooned and tooled up. 

Then a friend said something really stupid that just knocked the wind right out of me. My husband/ally was behind me talking so he didn't hear and couldn't step in. Drat! I was left hanging in the wind. The conversation went like this.

Friend: "Are you working now?"

Me: "No. I'm on disability".

Friend: "Oh, so you're home?"

Me: "Yup!"

Friend: "Can't you even work from home?"

Me: ... (wind knocked out)

Me: "Noooo... I'm disabled. I'm on disability. I'm home not working because I can't work."

... "silence"

Me: "So how are YOU doing?"

That's my technique. Whenever someone puts their foot in their mouth I just turn the conversation away from me completely and onto them.

During that same evening I also had a very drunk friend hang ALL over my chair and myself, smudge my glasses, gave many many hugs in which I was careful to turn my chair off so as to not run over anyone... in short it was nice to see my friends but it was a LOT of spoons.

I seriously understand why people just stay home. 

My sweet friends want to bring a lunch over soon and come over to my house. I promise myself not to clean or feel bad about my house not being "up to snuff" comparing it to how it used to be. I also will not let my husband run around cleaning and buying food to entertain them. We'll see if that's better. 

I know people don't mean to say hurtful things. And it does come from strangers too. All the time really. But that's what I mean when I say often times it's just easier to stay home. 

You Look So Pretty!

Second only to "you look so healthy" those four words also can be a bit loaded. I mean when was the last time you told a woman "You're so smart! You're so organized! I really admire you!" Not to say that we don't also compliment others outside of beauty, but come on. We all know "You look so great!" Commenting on someone's superficial appearance is the cultural go to. Even for children "You're so cute". Which is really terrible.

I had a conversation with my mother the other day about beauty standards and ableism. I feel like every way in which a person deviates from the cultural standard of "normal" you will encounter push back. This push back can come in the way of prejudice, discrimination and the world just not being made for you.

No makeup, kid clips, not fighting aging.
I think I'm still pretty.

Typical "deviations" from our current culture that will cause pushback are:

• Skin Color
• Body Size
• Signs of normal aging (wrinkles, sagging, silver hair...)
• Obvious signs of disability (wheelchair, walker, synthetic limb, deformation, oxy tank...)
• Height
• Socioeconomic status (how wealthy you are... or aren't)
• Body hair (on women)
• Body odor (on women)
• Dressing "outside the norm"
• Body modifications (face piercings, ear gaging, etc...)

And as if this exclusionary, impulsive reaction wasn't bad enough another thing I've noticed is that the more of this box's you tick, the more violent and immediate someone's reaction can be. One need look no further than the violence perpetrated against trans women of color to see that's a fact. Being tall, a person of color and transgender can easily get you killed.

So what does that mean to me, a queen size disabled person over 20? I shared with my family that I've noticed a huge difference in how people react to me and treat me depending on what mobility device I'm using, the color of my hair (natural vs colored), the clothes I'm wearing, the purse I use and if I've chosen to wear makeup that day.

Growing my hair color out.

AGAIN...

The most poorly I'm treated is with natural hair, casual clothes, no Coach bag and using a store electric cart. I honestly like to keep my cane in a store electric cart with me as an obvious signal to my disability. Being a big person there are way too many "people of Wall Mart" memes out there for my comfort. I noticed that people will not get out of my way (block me in on purpose), ignore me, not offer to help me with anything and in general tend to just look away.

Helooooo. Get the hell out of my wayyyy!!!

The best I'm treated is in full makeup, hair colored, dressed up, expensive purse and either walking on my own (something I only do in my own house these days) or using Dory, my "mega wheelchair." I believe that is because it screams "I have a legit disability!!!" Dory for sure gets me treated even better than my travel wheelchair Ariel. I'm guessing because of the size and gadgets it just "looks more disabled".

Vroooom!
Me and Dory taking off from my Mom's house.

So what would happen if I have blue hair, piercings all over, riding in a scooter, wearing rainbow yoga pants and an obscure 80's band t-shirt carrying a unicorn backpack on my back? If you add to that it is a person of color and a very large person I'm sure she'd end up a meme on someone's Instagram account, or be filmed against her will and uploaded to YouTube with some horrible comments being made. That's my guess. Because this person is too far outside of what our culture deems "normal" and they deserve to be punished for it.

Even with knowing all this to be true I still choose to push the boundaries on normalized culture. I feel it's the only way to create change for the good. For there to be love instead of hatred and prejudice. Because I am a social justice warrior and a feminist and that will never change no matter how severe my disability becomes. 

With not being able to work right now. Not being able to help people the way that I used to. Living with this core value of loving people and fighting against stigma in even the smallest way still gives me a strong sense of purpose. Something everyone needs in life.

Wheelchair Van Shopping

Terrifying, daunting, uncomfortable, overwhelming... maybe those words begin to describe what it's like to shop for a wheelchair van. These are just a few reasons I suspect most wheelchair users choose to either not go out much, or to take public transportation. The other reason? COST! DAMN! I mean come on! The prices of these vans will take your breath away.

My husband and I began thinking about pulling the trigger on a wheelchair van this summer. We're fortunate enough to have actual options in the city we live in. Most people I think are stuck with a single dealer or buying private. I thought I educated myself and was prepared ahead of time from internet research. Nope. So let me break down my experience for you so far in the hopes that it might help you out in your search.

That's some serious "RBF" going on there!

Step 1: Find what kind of ramp you want.
Electric? Manual? In-Floor or out? There are many options here. I want an electric "Fold Out" which is not the same as "In Floor". The reason is because if the electric equipment has a malfunction (and we know how common that is) then you can still manually get your ramp up and down. You're not trapped in your chair till some magical help comes along.

Step 2: Will you ever be driving?
I've heard a lot of stories from people who thought they would drive, but then due to their progressive condition only drove for a year or two. It ended up not being worth the huge expense of making the drivers side accomidate their needs. Case in point. When we first started looking I was still driving. I was interested in a "Transfer Drivers Seat" meaning I could easily transfer from my chair to the drivers seat to drive. Well, I'm no longer driving and I don't need that expensive feature.

One of the many benefits of buying a van from a dealer vs private party is that as your needs change you can have your van modified. For example I don't need a transfer passenger seat yet, or a chair lock down in the front instead of a passenger seat. If that changes in the future I can have our van adjusted.

Step 3: What kind of van do you want?
This is called the "Chassi" in the wheelchair van world. Common makers are the usual. Honda, Toyota, Chrysler, Dodge. Each comes with their own pluses and minuses. I am very tall with long legs and an "ample bottom" so having a comfortable, roomy passenger seat is really important to me. Also due to my chronic pain, seat heaters are really a big plus. Because of these and a few other important features I'm hoping to buy a Chrysler Pacifica Touring-L Plus.

Step 4: What's your budget?
Wheelchair vans range wildly in price just like regular cars. Also like a regular car you get what you pay for (in my opinion.) The older the car, the more miles on it, the less expensive it will be. You will need to consider--The Chassi Price, Conversion Price, Equipment Cost (tie downs, modifications to your chair to be locked in, transfer seats, driving mechanisms...) and Warranty. Then of course there's taxes, documentation fee, license fee, smog, registration and every other nickel dime fee there is. 

Some Chassi brands will give you a small rebate. Usually around $1K and only if you're buying brand new. A super small drop in the bucket. In my state there are no programs to help you with the cost. It's considered a "non medical necessity". Though my dealer mentioned we might be able to deduct the cost of the conversion and equipment as a DME (durable medical equipment). We'll check with our accountant about that.

And some cars have lease options instead of buying. But I have found them to be too rich for my blood. However if money is no object and you just want to have the best you can buy it should be an option to consider.

I was happy to hear that there are programs where veterans can get a van almost completely covered (they should be able to get whatever they want for free if you ask me). And my dealer said "Victims of violent crime get a 30K payout to put toward the cost of a van". 

The van we're considering is a 2017 (two years old) with super low miles. "Out the door" it will cost $61,094.87 to purchase. Luckily we have excellent credit, but I was told that financing a van can be difficult as it isn't treated like a typical car purchase. You can also get financing for up to 10 years to make the monthly payments a little bit easier. For us those payments are still 4x our current monthly car payment so that's a huge, scary undertaking.

The next steps are to talk to our banker about it, sell my husbands car and pray that my student loan debt is forgiven due to permanent disability. I'm checking the status on that daily. Hopefully we can pull the trigger soon because it would really improve my quality of life to have "Dory" with me whenever I need her. 

What I CAN Do!

When you have any kind of illness it can be easy to get sucked into thinking about what you "can't" do anymore. "Ooooo, I USED to be able to (blank) but now I CAN'T!!" This kind of thinking isn't useful in any way. In fact it's a very slippery slope that leads to serious depression. 

I had an appointment yesterday with a new neurologist that went fantastic (more on that here). But medical appointments are also always fixated on what I can't do, what's wrong with me, what's causing me distress with my body. 

So to counteract that I give you a short list of what I CAN still do that brings me a lot of joy.

Even though I can't drive anymore, I CAN use Dory (my giant wheelchair) to travel my town independently. I'm very lucky to live in an accessible town and I love zooming as fast as I can in the bike lane all on my own. I meet family or friends this way, run a quick errand or walk my dog. 

I can't cook as much as I used to, but I can use my kitchen stool to cook more simple things, especially for lunch. Here I'm making spaghetti squash with chicken sausage for my mom for lunch. And even though my husband usually makes dinner I can still help.

I don't think there will ever come a time where I'm unable to shop, even if it's just online. I can still manage shopping just fine. Shopping gives me a sense of control over my environment (getting to pick out new things) and makes me happy. I just have to be sure not splurge too often.

I can still laugh and laugh LOUD! My son says I have two laughs, Marge Simpson and an evil witch cackle. I love it. And I love to make other people laugh. Laughter is contagious and super good for you. I hope I will always be able to laugh.

This is a really big one that I don't take for granted. I can still independently dress myself top to bottom. I do little tricks to make it easier (like don't always wear a bra), but I can still get the job done and look pretty darn good.

I can also still:

• write with my hand
• use a computer
• see
• taste
• breathe
• sleep in my bed
• have sex
• read
• bathe on my own
• play with my dog
• stretch
• clean the house a little bit
• do laundry
• walk around my house unaided
  (I love having such a small house!)
• feed myself
• kiss
• hug
• do a puzzle
• paint
• talk
• keep a blog

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.