Friday, July 12, 2019

Resources and Innovation

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.

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.

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.
The first is the SpeediCath Compact.  If you leave the house, it can be a mess to do this in a public bathroom.  You have to be so careful and the process can be time-consuming and difficult.  The compact is a lifesaver!  It is small, pre-prepped, and has more area to let you work with less area that can be infected.  Plus, when you are done, us just slid it back in the cap and throw it away.  It looks like a tampon applicator so no one would guess.  As an additional bonus, it takes up much less purse space. To be prepared, I follow my mama’s long learned advise for using the toilet in public when handicapped.

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!

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