SPINE INJURY - When friends play doctor

When you turn up with a walker, after three days in the hospital, friends ask questions.  Even acquaintances ask questions.  That's okay. 

Then come the stories.  It seems that everyone you ever met knows someone who had "my problem" and fixed it with Pilates or yoga or losing weight or whatever.  There was at least one person I had to avoid because I couldn't listen to any more insistence not to have the surgery. I could have used a simple mention of alternatives.  Followed by silence.  My family doctor must have guessed how afraid I was. It was hard enough even thinking about having that weird  contraption I saw a model of in the surgeon's office being put inside me forever.

I had opinions.  I had nerve shots.  I had doctors. 

It was very, very hard standing on the sidewalk in the dark with my groceries and calling my roommate because I couldn't put any weight on my right leg.  My roommate was telling me not to postpone the fusion.  
 
I finally had enough. 

The surgery was okay.   The rehab could have been more pleasant, but one great PT made me do what I was sure I couldn't do.

Now, on days when the nerves to my legs are still unhappy, I secretly think:

I didn't say "enough!" soon enough. 

LUMBAR SPINE INJURY -- What I needed more

Yes.  I needed a chair that fit.  After diagnosis, when I got an adjustable chair at home, I needed a low enough desk to get my arms from dragging on the desk and causing all sorts of problems.   I got my posture chair to rest my back; and that needed an ottoman, because the chair was too high.  I took action at work for once, and when the boss was away, I persuaded a man at work to lower the desk chair to my height. 

There were many places where the chairs did not belong to me.  And they were too tall, putting a lot of stress on the backs of my legs.  And at the same time, my spine was putting stress on the nerves to those legs.

Skip to after the surgery.  There were chairs in my hospital rooms.  They were all too tall, including the "potty chair" they thought I needed.  Way too tall.

Then off to rehab.  The agony of a wheelchair that was too tall for me, with a shallow sling seat with an edge that dug into my legs while putting pressure on them.  It was three days before someone came on shift and realized that the foot rests could be raised.

Then a note on the bulletin board the "the goal" set by somebody was that I must be up for several hours a day in that torture chair.  I complained, and was told there were no other chairs.  I have a high threshold, and the leg pain from that chair was many times worse than any pain from the actual surgery.

In addition, since I was post surgery, I was not supposed to bend down and tug on the sticking wheelchair lock, so I was basically trapped in the chair as I watched at least one other patient with a huge brace wheel himself to freedom up and down the hall.

Since then I've noticed that a number of chair users are in chairs with no adjustment for short legs.  Why not!? 

I also heard of a new program started by a famous manufacturer to improve patient safety and comfort.  The photos show a recliner that is too big for me, and too tall.

I'm still looking on line for wheelchairs with adjustments for leg length, and I'm not getting too far with it.  No, I don't need one now. 

Somebody does!

Lumbar spine injury - What I needed part 2

Long ago when women were typists, they got a chair and a table.  Too high?  Too low?  Too bad.  Keep typing.

But then an executive learned to type.  And there was science.  A magic device lifted the massive typewriter to typing height.  When it had to be put away (to hide the fact that he did his own typing) the magic device put the typewriter away. 

After much searching, I now finally found  the device that lifts the jumbo electric food mixer to counter height.  I didn't, and don't,  have two big guys for the demanding installation, and I was living in a place that didn't have the very essential shape and height of base cabinet.  Most places don't.

If I had been in a wheelchair, I could have used more than one such lifter.  Or two different models.  I could still use one.

Why are they not more common? Not everyone needs the power to lift the jumbo mixer, just things or shelves we can't bend down for.  People who already have motion limits NEED "the right stuff" to stay out of hospitals.

If we're going to live to 95, we need equipment that considers us.

BABY BEAR'S PROBLEM

Baby Bear goes to the library to study.  She climbs up on the hard wooden chair.  Her feet don't reach the floor.  Her legs start to hurt.  There is a tall  guy next to her.  His feet reach the floor.  He is happy.

 She shops for furniture for her apartment.  All the chairs are too tall.  Her feet do not reach the floor.

She goes to her doctor's office for a checkup.  All the chairs in the waiting room are the same size.  Her feet do not reach the floor.  In the examining room is an unmatching chair.  It is just her size.  She is happy.  The doctor is very busy, so they don't discuss the chairs, or the second patch of purple broken capillaries on the back of her leg.

One day she is at a meeting.  She feels her feet swelling and kicks off her Mary Janes.  A woman nearby is a nurse.  The nurse says:  if your feet swell, it's not your shoes, it's the chair! 

Baby Bear goes home and looks up Mayo Clinic website that tells her to pick a chair that allows her to rest her feet flat on the floor while her knees are level with her hips, and if necessary, prop  her feet up with a footstool or other support. 

Fat chance, says Baby Bear.  She wonders if doctors think of short people when they pay for the chairs in their waiting rooms.  She wonders why hospitals don't know this about chairs.  She wonders who designs this one-size-doesn't-fit furniture.  And why?

If Baby Bear doesn't say more on this later, I definitely will.

SECRETS - OOPS

Danea Horn's post on KevinMD's Patient section was right on time for me.  I read the secrets she hasn't told her doctor, and realized I haven't told all either.  And haven't asked all.  I just found a section of the Hiatal Hernia pamphlet that I had never read!  And discovered bending is just as much of a problem for my GI health as it is for spine fusion "graduates."   A reminder not only to change my posture, but more important:
I didn't ask my primary doctor OR my GI doctor at home enough questions when I found I had the hiatal hernia.

In general, my primary doctor at home knows all my secrets, as far as I know, but I may have rushed past some current things in appointments during the zillion decisions about the spine problem.

Now I'm hundreds of miles from him, and my job - which seems impossible- is finding doctors I trust enough in this state so I don't keep secrets that are dangerous to me. 

You Don't Look Sick to Me!

I just read a wonderful article reproduced on KevinMD.com.  Suzanne Koven, MD.  wrote "Education that occurs among patients in a group."  I've never had a group offered to me for any ongoing medical issues.  I've been loudly confronted across a room at work with, "Why are you eating baby food!?"  And gone home from a specialist's diagnosis wondering if I should even tell my family.

But the really wonderful thing was her story about a woman who'd been given a referral to another woman with the same problem.  I wish there had been flashing red lights on the phrase "it helped me emotionally. . ." 

There is no feeling like the aloneness of having no one to talk to when we're sick with something chronic or when looking at a long recovery with plenty of physical limitations.  In a movie some time ago, women getting chemo were all together in a comfortable treatment area.  Yet new one-passenger chemo rooms are still being built and furnished.

I had great doctors in California, but the closest I ever came to a group was talking through a sheet that divided two treatment areas in a minor rehab for tendinitis.  In rehab for lumbar fusion, I never had a chance to speak to another patient. 

If the group education and even group rehab is less expensive, why isn't it popular? 

How many doctors have read her article?  How many will act on it?


 

Meanwhile. . . a $ rant - who's in charge?

Headline today: $Half billion CMS can't get back from false claims.  What can Congress do to enable CMS or oversee CMS or give them the people they need to get this money back for those who need it?  If not Congress, who's in charge?