Covid Three Years Later

My husband and I attended a live show yesterday. It was my first one indoors since COVID began three years ago. Officially COVID was declared a pandemic in March, 2020. But it began much earlier than that and was already thriving in many countries this time three years ago.

Fast forward to now. There have been three immunizations for three different mutations. We keep having new mutations however because of the lack of people willing to be immunized. Of course I have had all three the second that I could. I've also never contracted COVID (that I know of. I never tested positive.)

COVID is still very much alive and well but most of the "civilized" world has decided it is not. People are tired of wearing masks everywhere and tired of being told what to do. So everyone has just mutually agreed that it's not a threat anymore. Even though it is. 

The issue with that "solution" that I have is that society has then silently agreed to:

1) Keep mutating COVID into new forms requiring new vaccinations.

2) They are ok with old people dying horrible deaths (as the most at-risk population.)

3) They are ok with babies and young people dying horrible deaths.

4) They are ok with chronically ill people dying horrible deaths.

Yeah... I'm not ok with any of that.

Especially ME dying a horrible death (or anyone I love for that matter.)

There are millions of people with compromised immune systems and compromised lungs out there. Myself included. That's why when we went to the show yesterday both my husband and myself "masked up." And you know what? I wasn't at all surprised that we were in the vast minority who did so. I saw maybe 10 people out of the thousands that attended the packed show.

This included my husband's family. None of them wore a mask. 

I think that people believe vaccines make them "safe." Like a condom protects you from a pregnancy. It's about the same percentage I believe. A bit of "Welllll... it helps and it's better than nothing, but don't be too shocked if it fails." The "rubber vaccine" should be its new name. Hah!

That's the last big indoor event I'm attending for a while. Although I enjoyed it, it did make me nervous. I'll continue to vacillate between "I'm not doing anything indoors ever!" And "I have to just keep living my life." It's a very interesting time to be in. 

Unlocking the World

On August 17th, 2018 I had my first ever assessment for a wheelchair. That chair would turn out to be my Quantum Edge in Ocean Blue (of course). I love her very much.

How can you love a wheelchair?

Much the same way people love their cars.

For me she's so much more than a chair that moves. She's everything about freedom that's so important. She literally unlocks the world for me. Without her my life would be smaller than small. 

She also means independence.

I'd be relying on others to push me everywhere if I didn't have her. Not only is that tedious for them, but it feels awful for me (literally, I get motion sick this way.) As my mother once put it when she had to push me before we purchased our wheelchair van. "Awwww, it feels the same as when you were little and I would push you in your stroller." For me too mom! It feels the same for me too. Like I'm an infant. Ick!

My biggest fear is that she will break and I'll have to wait months and months (if not a full year) to get a new one. Repairs and delivery of medical devices is shocking. A few companies have a monopoly so they can take their sweet time, lose your order or screw it up as much as they like. You're at their mercy. It's such a racket.

I have many fantasy businesses, but one of them is running my own wheelchair supply and repair business. 

Anyway... I digress. 

If something happens to my chair (and it already has in the past) I'm very limited. I do have my travel chair as a backup, but she's not nearly as comfortable or maneuverable. She's good for an emergency, or rugged travel. Not really for every day use.

I'm also curious if I could get a new wheelchair that raises and lowers up and down. Not just tilts front and back. And, as much as I love this chair, I didn't get the full assessment of an occupational therapist (OT) when I was fitted for her. Just a sales man for the company who ordered her for me.

I contacted my insurance company to see when I could qualify for a new chair and was told "Anytime you need one." WOW! That's great news. So then I reached out to my muscular neurologist and asked how it would work. She said she would need to see me, but that we could do a video visit. Then she would send me to my fabulous muscular disease OT for an assessment. Bingo!

This all means I'm hoping to get an order in for a new chair soon. That will give me some new options and a solid backup should anything happen. And IF I ever travel again on a plane, I can bring my big chair and not be in a panic if something should happen to it during the flight.

My world just keeps getting bigger.

Swimming in the deep end of life

I love the Ocean. I always have. When I was a little girl I used to spend all day every day every summer swimming and pretending I was either a mermaid or a shark. I love them both equally. The more my arms and legs stopped working the more my love for mermaids grew. I liked to think that I was just a land-locked mermaid and not a disabled woman. Isn't that thought more fun?

Last weekend my husband took me to the "Bubble Ball" at a mermaid convention in our town. Who even knew there was such a thing? You had to come dressed as either a mermaid or a pirate. I was thinking "What's there to do at a 'ball' in a wheelchair?" Turns out tons of stuff!

Me being me I had to dress as a "Princess, mermaid, fairy, shark" and not just a mermaid. "Where's the shark?" You might be thinking? I have 5 gills on my neck. Hehehe.

My husband was "Mr. Smee" from Peter Pan. Smart guy that he is he picked a comfy outfit in the sweltering heat. 

There was a magician who was amazing and looked a lot like "Captain Jack Sparrow" from the Pirates of the Caribbean movies. 

There were games, photo booths, tarot card readings, magic, stage shows and all kinds of fun to be had. I did get a little bit of chair dancing on at the end too. We had a fantastic time. I'm glad I didn't let my hesitation of "going to a dance in a wheelchair" get in the way of me letting my inner mermaid (princess, fairy, shark) shine!

Mobility Aide Review

I've had the privilege to be able to try out a lot of different mobility devices this year. Yes, I say "privilege" because they are very expensive, hard to acquire and I know they aren't an option for everyone. Knowing that I thought it might be helpful for you to hear my thoughts on each one, what I find useful and how pricy it is. That way if you can only afford one you can choose the best one for you. So here we go:

#1) Nordic Poles - Price $21-$100

My poles have rubber "walker" tips that can be removed. Under that are metal spike tips that are great for sand, dirt, gravel, etc... I used these poles when my muscle weakness first hit and at the beach. They are wonderful for walking through sand and offer extra stability. Also good for people with minor muscle weakness who just need a little extra. I've used both 1 pole and 2 poles. I preferred 1 for around town use and 2 for any "off road" walking. The plus side with poles is no one gives you a second glance. If you don't like attention with your mobility device, it's a bonus.

#2) Rollator - Price $70-$200

I love "Meg" my rollator. Mine has a seat and I bought it specifically for when I'm out and need to take a break. Seats are hard to find in shops and small towns. It's great just to be able to sit when you're standing in a long line. The down-side of a rollator is it can be hard to push, especially outside over cracks, small rocks, through gravel, etc. Like REALLY hard to push. Really REALLY REALLY hard to push. You get the idea. 

People also do stare a little bit, but not much. If you drop something, expect someone to get it for you. People hold doors open for you, etc... You'll also match the over 70 crowd, but go you for defying stereotypes! I actually had a younger woman tell me she needs one for her RA but was embarrassed to use it. But after seeing me out in mine she's going to buy one. YAY!

#3) Public Electric Shopping Carts - FREE!

Yes, I do consider these a mobility device. Most stores have them available for shoppers. They range between super slow (I'm looking at you Target) to shockingly speedy (Yay Costco!) They make shopping much easier but do come with many drawbacks. One is you're limited to what you can buy based on the size of your basket. Another is other shoppers do NOT consider them to be a mobility device. I think most people just think you're lazy if you use one. Expect others not to get out of your way, to give you judging looks and to just be somewhat jerky in general. Of course that doesn't stand for all people. Just my own experience. 

Another down side is most stores tend to forget about people using them and design their layout so it's very hard to navigate. I bump things and knock things down frequently. I also HATE the "BEEP BEEP BEEP" of backing up, so I try hard not to need to do that. Also they can move so slow that if I forget something on the other side of the store I just tend to let it go. 

#4) Transport Wheelchair - Price $70-$200

My transport chair seen here was around $130. A transport chair is a wheelchair that the person sitting in can't make go. You need someone to push you. They're very light and fold up to fit in any car (just like a walker and a rollator.) The plus side is no walking or muscle use is required for the person in the chair. The down side is they have zero control and are 100% reliant on the person pushing them. Another down is it is hard to go over transition strips, cracks and other minor hazards because of the small wheels. They do best in smooth places like malls, stores and museums. They also aren't comfortable to sit in for a very long period of time. Short term, they're great.

People don't seem to notice it as much as an electric chair. In fact it has been my experience that you become totally invisible in this thing. People will tend to talk to the person pushing you instead of you and will look at them instead of you. It's very odd and totally different then when you're in an electric chair or using a rollator.

#5) Compact, Folding, Electric Wheelchair - Price $2,000 - $5,000

The Fold and Go chair you see here is priced at $2,795. These wheelchairs are typically designed for travel. They are light (around 50-100lbs) and can fit into the trunk of any standard car. I don't own one yet, but this is next on my purchase list. 

These chairs appeal to me because of what I just mentioned, but they're also more comfortable than a transport chair if you're out all day and the person in the chair can control where they're going. That means way more independence. You also aren't reliant on a caregiver, so you can use it when solo. IF you can get it in and out of the car alone. Some insurance companies cover these chairs, but mine does not. Bummer. 

#6) Traditional Electric Wheelchair - Price $5,000 - $30,000

This is a picture of my chair and the receipt states it was $16,000. Luckily for me, my insurance company agreed it was needed and covered the cost for me. The up-side of this kind of chair is it is very comfortable, I have complete control and don't need help to use it, it is heavy duty and able to go all day, it has 6 wheels and feels very stable, it has strong shocks and doesn't hurt going over doorways, cracks, rocks, bumps, etc...

The down side of this chair (other than cost) is size and weight. It weighs just under 300lbs and is too heavy for my Kia Soul. That means I either am relying on public transportation, or I have to get a new car to use it. Luckily I happen to live very close to our downtown and can get around locally without driving. BUT that hugely limits where I can use it. Which is why my next purchase will be a Fold and Go. The other down side is it took me 3 months to get this chair through my insurance. I think that was actually very fast. Like a car there's also maintenance that the chair requires annually. 

People WILL stare, look, nod, gaze and in general notice when you use this big beast. But as my husband said "I've never seen people be so... nice!" It's true. Everyone will be nice to you, stop for you, hold doors for you, let you pet their dog, etc. VERY different experience than the poles or an electric shopping cart. If you're into psychology it will be a fascinating experience for you. You also are up a bit higher than the transport chair (which is exactly butt level.) So if having everyone's butts in your face holds no appeal, this chair is a major improvement. 

As my muscle weakness has progressed so have my tools that I use. Also as I go through the day my muscles gas out and I need more and more support. So yesterday I went from walking to using my rollator to using my transport chair at the last 2 stores we visited. At times like that I really miss my electric chair. I really don't like the transport chair, but need to listen to my body. I'm looking forward to having an electric chair that will fit in my car and I can use out and about when not in our town.

Hope this little run-down helped you!