When your nurse has to get creative to force your veins to take the treatment. |
I decided to take a break from all the work I have for my classes and write a quick post. So much has happened in the last few weeks. I guess I’ll just dive right in.
Firstly, I got my new
wheelchair!!! It looks so sleek and I love
the single footrest instead of the two.
My feet like to stay together so trying to keep them on two separate foot
plates was impossible most days. And,
since the foot plates where push out in front of me, a foot or both feet would
decide to go under the chair so they could sit at a 90-degree angle. Thank goodness that is a thing of the past… The new chair holds me at a great angle,
reduces the spasticity, and is so smooth to propel. Unfortunately, I can’t use it. Yet!
New chair just waiting to be used! Plus, my Handy Bags. |
In my supplier’s determination to
make me as comfortable as possible, they got me a Roho cushion for it. They are amazingly comfortable; however, they
are impossible to transfer on and off of if you have any weakness at all. The cushion is made of air pockets to take all
the pressure off your skin, but the light weightiness is what makes the
transfers difficult or, in most cases for me, impossible. The air moves between chambers giving me
nothing to push on to move and the edges roll back as I am getting on so it
ends up dislodged and stuck under me.
And yes, it is supposed to be under me but not in the ways it is at that
point! Since I live on my own, that
could be pretty dangerous. It could
cause me to end up on the floor and, since I can’t lift myself back in the
chair yet, I’d have to call my brother to help.
They are getting me a replacement (Jay Ion) foam cushion that will be
easier to use in my situation.
The Pouch by Handy Bag |
The Dynamic Bag by Handy Bag Anti-Theft and easy to pull to the front from the back. |
Something we found while trying to
get me set-up to go to school on campus this fall was Handy Bags. Ingenious bags that were made specifically
for wheelchair users. If you are in a
wheelchair, you know all too well the struggle with purses. If you have spasticity and pain like my mama
and I, then you know that weight on your legs is painful. If not, then you know they can just be incredibly
inconvenient, and you are constantly clutching it, so it doesn’t fall (if you
are in a power chair) or praying it doesn’t fall (if you are in a manual). Handy Bags is made out of Israel by people
who actually face these challenges, so they are incredibly well thought out and
nice quality. My chair is equipped with
the Dynamic bag and the Pouch. https://www.handybagco.com/bags/
An IZ Show. No sweatsuit present. :) |
Another place to look at is IZ Adaptive. This company makes clothes for all sort of
disabilities. Most clothes in tradition
stores are made for standing. They are
cut for people who stand up and down so you don’t really notice the inconveniences
they can pose while sitting. If you are
in a wheelchair, this is a little tougher.
Pants are too high in the front, therefore, they are constantly bunched
up on your thighs. Or they are cut too
low in the back and show areas we’d rather hide. Coats are difficult to get on and off because
they bulk up around you, making it difficult to move (take it from someone who
layered all winter so I could avoid wearing one). Even shirts can be a pain, though less than
the others. IZ Adaptive has solutions
for all of that. https://izadaptive.com/
I was blessed that my mama has
collected all these resources through the years, so we knew where to start with
me. If you are new to being handicapped,
it can be hard to find some of these resources if you don’t know what to look
for or what is open to you. It’s 12 years
of searching that brought us some of these for Mama, and now me.
One of the tough aspects of this
for me was the onset of Neurogenic Bladder.
Not fun and very upsetting.
Because of the loss of feeling from my lower back down, I lost feeling
there as well, meaning there is very little control. I tried to hide it for months (stupidly but
the embarrassment, you know….) until I just couldn’t keep up. I went into the doctor (yet another) and they
decided I needed to start using a catheter.
That was a hard hit to take but, honestly, it has solved so much. I can hydrate again and don’t have to be
scared to leave the house. I didn’t let
it hold me back but it was a stress I had to contend with. What I wanted to show you guys is an amazing
product and another that is self-made and invaluable if you are on this journey
too.
The SpeediCsth Compact next to my favorite brand of lipstick. |
A true Lifesaver. |
The last would be this little
contraption that is self-made (put together by my mama to help me with this
process). Learning to self-cath can be
daunting. As women, we can’t really see
where we are going and there are a few places for it to go… So, they advise using a mirror. That’s all well and good but balancing a flip
mirror on the toilet while trying to do that and, in my case, keep my legs calm
is about as easy as it sounds. That
little mirror was constantly flying, and I kept being afraid it would go
backwards into the toilet… Plus, I had
no idea bathrooms were so poorly lit! I
never really thought about it or noticed but, they really are terribly lit. So, my mom thought of a way to help. It is a movable phone holder with a lighted
compact. This allows me to position the
mirror as needed and use the light from the compact if it is too dark. I just throw it in my bag on the back of my
chair and pull it out when needed. Since
it is a screw-down attachment and not a clip, you can attach it anywhere. Grab bars, toilet paper holders, even your
chair.
Easily attached and unattached to the most convenient surface. |
I hope this helps someone out
there. I know the process of adjustment
is tough but there are resources out there and, what isn’t readily available, you
can get creative with.
Because flowers make you smile and Basil smells so good! |