Designs for the well, designs for the sick

I have a car that was the one I could afford.  It has been running, except for about 10 or12 days in the shop, for over 20 years.

When I left the hospital recently, they (or Medicare) gave me a walker that will, with any luck, last 20 weeks.  The man who adjusted it to my height told me not to give it away-- it was the only one I would get in this lifetime.  A plastic guard at the bottom of one leg, to keep it from catching on the carpet, disintegrated in less than two weeks.  I found the pieces in the alley leading to the laundry room.  I guess I was supposed to carry the walker. 

A week or so later, I was told to buy a shower chair.

This blog is supposed to be about getting what we need, so I should start a letter like this:

Dear Invacare:
About this shower chair.  Really thoughtless design.  It's not safe, except maybe for washing my feet.   
 
The plastic seat and back are nice and shiny, so my soapy hand grasping for safety slides right off.

The back legs on this beauty do not cant backward.  If I even brush against it, it tilts backward immediately, leaving nothing for me to grab onto.  I'm back to showering standing up.

My roommate just got an exec chair for only $45 more than the shower chair cost.  His chair wouldn't fall backward if hit by a small car. 
What's wrong with this picture? 

It's not easy being without Green

I'm a mystery fiction addict.  I read the big boys--Michael Connolly and that crowd, because I like the way they write.

When a character in the book is on the run, hiding out, broke, or otherwise in trouble, he rents a dingy room that has a commanding view of the side of another building.  No tree, no bush, no sky. 

When I was in the hospital a couple of weeks ago, my room had a window.  It had a great window shade that kept out the hot sun, and unfortunately, the sky.  I missed the sky.

This was not a big deal; I was only there for three days, and it was pretty luxurious as hospitals go.  The nurses and aides were incredibly busy.  I guess I could have thrown myself on their mercy on our many trips to the bathroom, and got the shade opened. 

There is a "garden" at that hospital.  It's really mostly concrete, with a double koi pond and real koi.  As a patient, I saw it for only 3 seconds as I was rolled at high speed down a hallway/bridge to another wing.

Once, as a visitor, I noticed it could not be seen from my friend's room. 

My goal these days is to ensure that hospital gardens are for patients to see, and to heal from.  If you get tired of hearing about this, please give me a comment.  And if you've been a patient who could see or touch a garden when in a hospital or convalescent home, please tell us where it is.

She Don't Look Sick to Me Part 4

Several years ago, a woman from another country was my regular coiffeur, or however you spell it, cutting my hair in her own salon.  She informed me that multiple customers had told her they didn't want to come any more because so many people in wheelchairs were always there.  I decided I might someday be in a wheelchair for even a short time.  I didn't like their attitude.

Since then, someone I knew went to Europe and the UK and mentioned that they were less concerned about helping handicapped persons than the US is.
(Forget the ramps and such--get along the best you can.)

I'm lucky to be here.

For various reasons, I now have a different woman cutting and styling my hair.

And now, without much warning, I use a walker.   Sitting in the front row without it, I am the still the woman who could probably make you laugh.  Walking to the ladies' room with the walker, who am I?

SHE DON'T LOOK SICK TO ME PART 3

Suddenly, I do look sick because I have a walker. Now I am the patient.  It's a good name for us because the role requires patience.

A year and a half ago, I made a bad mistake moving furniture, which either  aggravated an existing spine problem or started a new one.  One injection.  Then, for a year and a half, I was okay as usual.  Physical therapy and some lifting restrictions.  Did my job.

Then, about a month ago, I got leg pain that an injection didn't help.
Almost two weeks ago, Saturday night,  the pain was so severe in the right leg that I didn't quite make it back to the apartment.  My roommate and benefactor more or less dragged me to the courtyard and called an ambulance.

Three days in the hospital, home for one night with big pain medicine, then back for a different kind of injections.  There are already three doctors involved.

 That right leg is the one that lets me hit the brake pedal, of course. So I'm not to drive. I can get out of this secure apartment complex, but no one can just walk in even to visit until I go to the gate.   

Some wonderful friends have helped. 
There is also a wonderful home health nurse, and wonderful as she is, there are still communication problems.  For example: Every 4 hours for mild pain as needed seems to mean different things to each of us.  I was not expecting communication problems.  There's a physical therapist and a social worker.  And I don't like thinking their questions sound like I'm 99 and a bit dotty.

Probable surgery is lurking, hovering over everything I do.  I was job-hunting; now that is on hold.  And my family is far away.

Sitting in a meeting or a waiting room, with the walker behind the chair, I don't look sick.  And yet almost my whole life is on hold.  I needed a copy of my birth certificate to apply for transportation vouchers.  The printer ran out of ink, and here I was with no transportation.
   
Have you been in this situation?  How did you cope with any fears of helplessness, fears of surgery that may not work, or of whatever?

 

SHE DON'T LOOK SICK TO ME! part 2

Today, for some reason, I'm out of a lot to say.  But I promised someone I'd mention that health professionals also sometimes have illnesses that don't show on the outside.  Tendinitis, for instance.  Illnesses that keep them from working at their profession or seriously limit the hours they can work.  We all need to be aware that someone we may see every week just can't jump out of the way as we zoom through the parking lot.  Or jam into the elevator because there was something on the morning news that made us leave for work too late.  Or when we roar up behind them in traffic after they have stepped on the brakes.

End of preaching for today. 

SHE DON'T LOOK SICK TO ME!

I remember that day knowing my leg was sore, but I was determined to get that drafting table out of my apartment right away.  The last bolt threatened to drop a BIG piece of wood onto landlord's precious hardwood floor, so I reached way over, and let it down more or less easily.  From then on I could not sleep at night, couldn't even lie still in bed.  I lived on Espresso Pillows candy at work until the specialist's appointment.

The x-ray of my spine was so scary that I couldn't think of a single question to ask.  He made an appointment to give me a saddle block, and an appointment for physical therapy.  I learned what an ice cushion or ice pad is, and how to make friends with one.  I also became  a big fan of Tylenol PM and of walking.  That was more than two years ago. 

My employer was notified that I could only lift eight or ten pounds, and I had some more movement restrictions.  Luckily, I had freedom to alternate sitting and standing. 

My friends learned about my problem.  I learned to yell in my car (with the windows closed of course) at tailgaters crowding my rear bumper and my spine.  My heart skips a beat when little kids play bumper cars with big carts in the grocery store.  When I fell once at work, I thought my heart would stop. 

Then my employer closed the store for good.  I suddenly see a lot of ads for jobs that require more lifting than I can do.  A dear friend and benefactor recommended me for baby-sitting, but I can't lift anybody much older than a newborn.  Breaking up a fight between two dogs bigger than chihuahuas or a fight in a kindergarten classroom is not feasible.  Shipping plumbing and engineering parts is . . .you guessed it.

I can't run for the train nor from a mugger. Even people dancing scare me sometimes.

Is there a good part coming up here?  Let me see: My physical therapy makes me stronger.  Walking in my new neighborhood brings me not just nodding acquaintances, but smiling and greeting ones.  I'm back to writing a lot more about health and exercises.  And I pay a lot more attention to looking healthy even in moments when I don't feel that way.

When I have a minute, I realize how many people I may have driven past or brushed past who look as healthy as I do, but who also have a "hidden" problem that makes them be extra careful. Makes them wish the rest of us would be extra careful, or at least polite.

I'm still learning to ask for help, which is important.  Receiving help is important.  I know who my real friends are.  Do I think this injury was a blessing?  Not so much, no.

THANK YOU, ASHLEY JUDD

Thanks to Ashley Judd for bringing this “look this way or be shunned” movement into the open.  She has done a favor not only for sick women and women with unusual birth anatomy, but for older women everywhere.  Preaching among ourselves about insults and belittling has not worked.  There are some things I believe we should do:

1.       Ready.   Decide for yourself NOW what is not admissible.  Warn your family there may be some changes in TV, subscriptions, and talk around the house.    Or else.

 

2.       Aim.   Contact “Ask a librarian” or whoever we have to contact to get the direct contact names of people who okay derogatory garbage in their programs and periodicals.  Write to where the buck stops (or starts.)   When we write, there is a record of what we asked.

3.        Fire!  Tell this head guy (or gal) what we are going to stop reading and hearing.  Alas, this means I have to be brave and tell my beloved mystery writers I don’t like depicting undesirable people as having wrinkles or anatomy rather like mine, or clothing of types big women can afford.  And then there’s the matter of describing the lady detective as slightly overweight.  Who decides who’s overweight?

Hit Off; hit Delete!   Turn off programs with derogatory messages and don’t let them in our homes.  One incredibly rude and tactless male fashion guru was barred from my living room and my hearing long ago.

 4.   Salute.  Bestow  very public honors and kudos to people like Mimi Melgaard  who made Loretta Devine look like a million bucks in that pink blazer on Gray’s Anatomy.  This is the part we always leave out!  Praising the people who make us like the way we can look regardless of our size or my short legs.