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?

LUMBAR FUSION - oops at month 9!

The last week hasn't been so good.  Uncomfortable.  A bit sore. Then last night needed 3 Gabapentin with my Benadryl to get to sleep.  Today I'm not bending or even driving.  Not even the lower drawer of the dishwasher.
But trying to take a nap was the same pain as last night.  Since leg pain led to my initial diagnosis, I don't want to think about what it means now, 9 months after surgery.
Calls in to surgeon and my trusted family doctor in LA.
Today:
Surgeon says it's too much sitting.  Hmmm

PS

In my rant about that book, I also tried to honor my CA doctors.  Inadvertently left out my kind and skilled spine surgeon, Roy Ashford, MD, from Pasadena, CA.

That book!

I deleted my earlier post on the "Irrationality" interview because I thought it would bring me problems.  And I didn't want to sound anti-doctor.

Tonight I read the table of contents of Irrationality in Healthcare, and I'm angry all over again. 

 If you read it, then may  I suggest you also read:  When Doctors Don't Listen by Leana Wen, MD., and Joshua Kosowsky, MD, for the other side of the story.  Or at least read the Action Tips and Reviews.

I can't close without honoring my wonderful doctors in Burbank, CA.  And also the late Bernard Virshup, MD, for his early work in that area:  How  To Cope With Your Doctor. 

LUMBAR FUSION - The world, the flesh, the brace!

Like a cocktail weiner in a refrigerator croissant, I left the hospital with a comical new silhouette.  A brace of some kind was a given.  I had heard of them referred to as "the turtle," had seen one on a stranger that made me doubt how he got into or out of a car.  Other problems gave me no time to ask about it. 

Suddenly I had the hors d'oeurve model.  It was fat, tall, heavy.  Since my waist is smaller than my hips, it bounced around on my buns until it made a sore place.  Luckily, as I wrote earlier, the croissant part was taken off in the surgeon's office since it was never going to fit.  The bony inside part remained - a sort of corset more Queen Victoria than Victoria's Secret.

Yes, I've mentioned the thing before, but it seems some post-surgery patients are already working or at least appearing in public.  This involves clothing a bit more demanding than a choir robe.  Like many of you, I couldn't pass myself off as a visitor from an interesting, exotic place. 

Enter:  my dear daughter in her stylist mode with new clothes!  She was not enthusiastic about the world staring at the brace.  So, from her magic bag, she produced a sleeveless knit dress suitable for any event, with a very stretchable waist.  For cool days or job interviews, a matching pullover top - sort of an almost batwing pullover that would even cover up a bulletproof vest.

There was a cottony-looking knit tunic cover-up that I still wear for air conditioning.  Also a fashionable delicate, sleeveless tunic with lots of detail - even wore that when someone took a picture of pal Tom and me.

Luckily I had never taken my jeans to the tailor, so they could be worn with the brace and any top. 

But the things she brought were the magic.  I felt like a real person, healthy enough that we went out to eat and I even climbed several stairs to the restaurant.  There is no medicine better than looking in the mirror and feeling that you look perfectly good and ready to take on the world.

SPINE FUSION - how on earth to get comfortable

Tired of ranting for the moment, thought I'd talk comfort.  Ever since I was diagnosed, I've depended on my "posture chair."  It's called AGEN from Ikea. The fairly straight back is canted slightly back to give me a rest.

My new dentist has a great chair with no mystery lumps (some CA dentists bought chairs with a lump where someone thinks we need one.  I had to carry a fat pillow with me for survival.)

I'm getting to the point, here:  comfy things in strange places:
There was a catalog on the family table last week from a place called Magellan's.  I only opened it because I read everything that will hold still and some things that won't.  It's about travel supplies.

Until my diagnosis, I thought travel supplies were gas, car air, and/or much closer airports.  I learned after surgery that a wheelchair flight does not mean you sit in the wheelchair; you get the same dumb seat as everyone else.

In this mag was a section called customized comfort.  I was looking for a sticker shock, having recently priced a stand/sit desk. 

Instead I found Business Class foot rest that is so thick, even I might get thru a flight without my feet sticking out in front of me like the comedy sketch woman.  And inflatable seat cushion, and luxe inflatable lumbar cushion.  And each thing (you do have to blow them up a bit) was under $30 dollars.  On the next page was a seat cushion that you don't have to blow up.  Under $40 dollars.  Imagine. You can spend more on another page for a different lumbar cushion.   I think I'm supposed to say here that you ask your doctor about these. 

Anyway, any of these things looks more comfy than a certain wheelchair ...well, there I go into ranting again.   Just take care of yourself.  And look for comfort where you don't expect it.