Mixed Feelings

Each time I purchase or receive a new mobility device it comes with some mixed feelings. I'm happy to have something to help me continue adventuring in ways that I just can't do on my own right now. But it's also a bit of a sad reminder to me that my body has gone through a lot and is still struggling.

This morning I pulled the trigger and purchased a Fold and Go electric wheelchair. (I received NO discount or kick back in any way for writing about this chair.) I've had my eye on it since my mobility first became an issue. I like that it can fit in the trunk of any car, can fly with you, only weighs 55lbs, can hold up to 365lbs, can go up a sharp incline, is all-weather and was conceptualized by a woman with RA (who is also President of the company.) It feels like it is designed just for me, not for someone with a serious spinal injury or other need where they are using their chair all the time. This one feels built for travel and adventure. Just what I'm looking for!

My turquoise chair should be here in 2-5 days.

I also got a 6 foot ramp, cup holder and travel bag for it.

My labs did come back with a low thyroid and I'm sure my doctor will increase my Synthroid dose (I'm already taking 115mcg daily and have had Hypothyroidism for 15 years.) I still don't think that's what's behind my muscle issues, but even if it is I read it will take "months for the muscles to regain their strength." But how cool would it be if that's such an easy fix?

Long Awaited Answers

California has been buried in smoke these last few weeks. But despite the scary air quality I've been working 30 hours and attending my never-ending slew of medical appointments. Last week was the much anticipated EMG to test the electric nerve impulses in my arms and legs. Everything looked fine. But yesterday was the BIG appointment with the Chief of Staff of Neurology. The big cheese. The head honcho. The person with whom the buck stops. 

Well, we possibly have some answers as to what the heck is going on with my muscles and why I start off strong, but then get weaker and weaker. He thinks I might have a rare genetic condition called Metabolic Myopathy. Basically what it boils down to is the muscles don't use energy how they should and they progressively get weaker the more they are used. BINGO! It sounds like we may have a winner.

Of course this means more testing and more testing and more testing because there are different types of MM that require different treatments. So now we're doing all that and I won't go back to see this "Magic Man" till January. Drat! More waiting.

Charities known in Greek Mythology as the Three Graces

So now much like the Three Graces I'm trying to spend this time bringing "Brightness" (like Aglaia), "Good Cheer" (like Thalia) and "Joy" (like Euphrosyne) to myself, my family and my work. I'm relieved to possibly have an answer, but also a bit broody about the whole "more waiting, more testing" part. Of course a bit of jewelry never hurts to help me keep in good spirits.

In case you're keeping score, since 2015 I've now had:

1. Latent Tuberculosis
2. 9 months of awful treatment for TB that left me unable to do anything
3. A total hysterectomy
4. Stocking and glove pattern peripheral neuropathy
5. Rheumatoid Disease
6. Raynaud's Disease
7. Meningioma (benign brain tumor on my left temporal lobe)
8. Brain surgery
9. Severe Muscle Weakness (possibly Metabolic Myopathy) 

They say what doesn't kill you makes you stronger. 

I think I'm now a super hero!

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! 

A Lot to Learn

I've spent most of this weekend getting to know how to use my new electric wheelchair. I decided to name her Dori after the Greek sea Goddess. Also if you spell it Dory then it's from a famous Disney fish who likes to sing "Just Keep Swimming" which is a great motto.

My husband has been out walking next to me while I'm rolling. We even figured out how to hold hands! Most impressive. So far the hardest thing has been managing big curbs. My wheels either spin, or a I go too fast and give my husband a minor heart attack. YouTube videos have been helpful for me. The dude who dropped my chair off and adjusted it for me told me to go at a big curb at an angle, but the manual said to never do that. YouTube seems to agree with the manual and tell you to go at it straight. So much to learn!

I'm a busy bee

I also am practicing opening doors and maneuvering through small shops. That's going really well, though people keep trying to open doors for me while I'm practicing. In fact, people have been especially nice while I'm in my chair. That's something I noticed when using Meg (my rollator) as well, but not quite to this extent. 

I told my husband that if you use a store electric cart people can be down right rude. But use a mobility device that's yours, then they change their tune. And apparently the more disabled you appear to them the nicer they are. Why can't we all just be nice to everyone all the time despite health and mobility problems?

One of the things I love best about Dori is that I'm no longer at butt level with people like I was with Shirley. It's just a bit higher where my eyes are more at the small of their backs. That's an unexpected perk and comes in very handy in crowded places like our Farmers Market.

I still don't have any way to transport Dori other than to use her around town. I need to look into our bus system and van system for chair users in our town. I'm also waiting for my new blue tag for my car. My temporary red one expires in 7 days and I'm starting to feel a bit anxious about it. 

Buzz buzz, so much to do!

Long Awaited Chair Day!

My chair was delivered this morning at 9AM on November 1st, just as promised. I wasn't sure how I would feel about this long awaited day. Upset? Anxious? Depressed? Happy? It turns out I was excited. When I first whizzed down my street with the delivery man jogging to keep up I let out little girl giggles and felt down right gleeful. That was a surprise. What really shocked me though was this feeling of freedom. Of "Oh right! That's how I used to be. Able to go anywhere I wanted, any time I wanted and not feel exhausted." Even though I've only been going through this shocking muscle issue since May, I had already forgotten when it felt like to briskly go down my block without pain and struggling not to sit on the curb. 

I hate the term "wheelchair bound." It implies that the person is "stuck" in some way to their chair. Instead any mobility device should be seen as liberating. They give the person the tools needed to get on with their life. That's what I'm hoping my chair will allow me to do. To get on with my life and gain more independence.

I only wish the new chair would fit in my car. That's the big bummer. She weighs 250lbs and even with a ramp would be too heavy and big for my Kia Soul. We could buy a handicapped accessible van, but they are incredibly expensive. Instead the plan is to see how my muscles are doing and then make a decision in December if this is something I still regularly need. If I do we might buy a lightweight folding electric chair like a Fold and Go instead of a van. 

A lighter chair would also be one I could travel with, which would be great. Most of the folding light electric chairs will fit in any car, so they can go along with your rental car when you get to where you're going. I don't think they're for people who need a chair 100% of the time, but for me it might be a good fit.

We're going to walk the dogs tonight. Something I haven't been able to do comfortably for a long time now. I'm excited to go along! It's those little things that I've really missed, but now get to enjoy again thanks to my chair!

And no... she doesn't have a name yet.