Showing posts with label review. Show all posts
Showing posts with label review. Show all posts

Friday, April 26, 2019

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!







Sunday, November 18, 2018

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! 

Communication is Key

It's common for me to forget that I'm disabled. I'm always in pain, but that has just become a part of my day-to-day life. The i...