Bam-Boozled!

Dear Mr. or Ms. Owner of Bamboo Clothing Co. Inc, (but I'm guessing you're a man because I think a woman would know better.)


When I purchased your bamboo shirts it was for your ultra-comfortable-squishy-satiny-silky-softness - like that which I experience in my BamBoody underwear.  This, Mr. or Ms. Owner, is not just a matter of personal preference.  It is not like the choosing Charmin toilet paper over Scott or adding aloe or lotion to your facial tissues. You might, in fact, say that this bamboo purchasing is a medical necessity; allowing me to actually live outside of my bathtub and don clothing so that the rest of the world does not have to avert their eyes every time I come into their presence.  I have discovered that the bamboo clothing is just about the only clothing that can touch my peripheral-neuropathied-skin without feeling like sandpaper.

So when will I get to the matter at hand?

Right now.

You see Mr/Ms Owner, when sufferers like me have perhipheral-neuropathied-skin and so purchase your apparel  for the comfort factor (because the clinginess factor of your product is not doing me any favors and the rest of the world really should avert their eyes when they see me approaching) the one thing we DON'T need is a freakin' label on the back of the shirt.  You may think that peripheral-neuropathied-skin is only on arms and legs and perhaps you make your bamboo socks without any stitching along the toe line, and for this I applaud you.  But I have Sjogren's Syndrome and this particular disease just happens to affect the aforementioned skin waaaaaay beyond my legs and arms.  It affects my shoulders, back, lips, chin and tongue as well.  And I don't need the itchiness of a label adding to the burning, icing, zapping, tingling, numb feeling that already exists there.

Somehow the makers of BamBoody have gotten the message.  From the looks of Drip Dry's underwear, Fruit of the Loom is on board as well.

But you?  You have BamBoozled me.

BAMBOOZLED!

Bam-Boody!

If you ever told me years ago that I'd be posting about underwear, I'd tell you you were crazy.

Now it appears that I am.


In love with bamboo, that's what I am.  I can't rip it out of those panda's mouths fast enough!  this stuff is like silk, or satin, or - well - bamboo!  I now officially own five pairs of bam-boodys, two bamboo shirts, two long sweaters, and my bamboo reaping is not officially over.

I'm considering the sheets; although nothing may be able to compete with my satin coverlet.   But imagine if I could actually use a top sheet again without pain.

Without pain.

Bamboo - I'd eat it, smoke it, rub it on my face, make shoes out of it.  I bet those pandas don't have neuropathy. Look at that panda just sitting there: fat, dumb, happy.  And everyone thinks they're so cute.  They travel from miles around to see new babies named Ling Ling and Sing Sing in the zoos.  And what about the ones on loan from China?  They're bamboo snatchers, that's what they are - all of them.  They are eating up the world's natural resources when they should be put to work making bamboo bras, and bathing suits, and bam-mother-of-the-boo-bride dresses, and old lady bamboo nursing home housecoats.

They should keep ahead of the natural fabric technology, for God knows that the research community is not finding a way to stop my small fiber neuropathy.

The Fall of Olympic Proportions

Some say it was an evolution of sorts.

Others tell me it was cascade-like.

Many describe it as a pirouette.

All 100 guests gasped when they saw it.  The fall that went on forever.  And ever.  The fall of Olympic proportions.

And then someone from the concerned crowd cried out, "Liz Wilkey just fell!"

Another quipped, "Liz Wilkey????  Did you say Liz Wilkey?"

As if there were any doubt as to exactly who it was that stepped off that step into nothing but thin air, the woman who had somehow turned and landed on her feet and then stepped backwards over and over again trying desperately to catch herself and regain her balance - a gymnast who didn't quite stick the landing.

And then?  Then she turned into that unfortunate ice skater who practices day and night for the big competition; attempting to do the quadruple Salchow, and somehow is short on her rotation and ends up falling flat on her butt in front of thousands of people.

Olympic proportions.

If course there weren't thousands who saw me fall as we were waiting for the valet service to bring our car after the event with 1250 attendees.  No, I'd estimate that gasp came from about 100 collective mouths.  But ice skaters don't have the additional humiliation of the competitor's husband running over and screaming, "Nobody move her!" at the exact moment that the parking attendant drives up and yells, "Black Nissan Rogue!"

Nobody move her?

I don't know who you think you're married to buddy, but I moving alright.  My car.  Just get me into my car!  Away from these faces, these eyes, these people!  I want my black Nissan Rogue!  But first I want a bag to put over my head as you raise me up and walk me over there.

Oh, the humiliation!



(For all who care. . .  you can read the story behind the story here.)

Hopkins: Can You Feel Me Now?

I had a return visit to the Sjogren's Center at Johns Hopkins Medical Center earlier this week.  I'm not sure I have ever posted here exactly how much I love this institution, its physicians, and the staff there.

I suppose that there were two enlightening things about my visit and both concerned my peripheral neuropathy.  The first is that a physician stayed overtime for an hour-long nerve conduction study which I was not scheduled for.  (I ask you. . . who in the regular world of medicine would do that?)  The test revealed that there are no signs of large fiber neuropathy as seen by my local physiologist on the same study, and the more interesting thing is that my physician knew enough to know that the NCS done by my local doctor just three months ago had inconsistencies which needed to be explored; for the findings either meant that I could add another diagnosis like vasculitis, or the test results were incorrect.

The previous test results were incorrect.

Yet my small fiber neuropathy remains and seems to have traveled to other parts of my body at great speed.  At my last visit four months ago, I never even mentioned my hands or arms as troublesome spots, yet now they are.  Small fiber neuropathy is often described as having a "stocking and glove" distribution, yet my lack of sensation has - very quickly it appears -  moved to  "gaiters and opera glove" coverage.

Oh, insurance Gods, please approve those IvIG treatments promptly!

Butt Cheeks and Peripheral Neuropathy

I Wish this Were My Butt

This is a bit of a sensitive subject, for after all, I will be speaking about an area of the body that's a tad taboo in polite circles.  It's also about sensitivity in the literal sense - not the figurative sense.  It's about the act of actually feeling, not feelings.  Oh, let me cut to the chase here and tell you it's about my butt cheeks.

Butt cheeks and peripheral neuropathy.

Peripheral neuropathy is a common complication in those with Sjogren's.  The neuropathy can be of the large nerve fiber type (those surrounded by an insulator called the myelin sheath) and/or of the smaller nerves closest to the skin.  At the present time, I have been diagnosed with small fiber neuropathy and am awaiting another test to see if my large fibers are involved or not.

But, whatever its source, this neuropathy is painful.

It sears.  It burns.  It aches. It stings. 

It crawls.  It zaps.  It zings and pings.  

 It is both ice cold and blazing hot, 

predictable is what it's not!.   

 And, despite the nerve pain medication I take to help alleviate it, it has been disrupting my life in ways I can't even explain to you.  I cannot find a shoe or sock that does not hurt to put on my feet except for UGG boots.  (Not particularly appropriate in the summer months.)  I cannot walk more than a block or two.  This neuropathy affects my sleep, for I wake up during the night with my feet stinging and burning throughout the night.  It is with me 24 hours a day; every day.

And it's creeping up on me.

It started on the bottom of my feet and tips of my toes and stayed that way for a few years.  But within the last nine months, it has begun moving at record speed.  Sensitivity in my toes came first, followed by the entire top of my foot.  My ankles and shins got quirky, sending a strange zapping feeling whenever they were touched.  There are patches on each of my knees that are extremely painful to touch; the same is developing on my elbows.  And now, I fear, on my butt cheeks.

Yes, the outside edges of my butt cheeks.

I can tell you right now, that if I ever attempted to kneel with the sensitivity I feel on my knees I would scream in agony.  Sheer agony.  And now a sneaking burning sensation is starting to appear on my buttocks when I sit.  Can you even imagine?

How on earth will I live life without sitting?    For it has been said that sitting (and drinking wine) is what I do best!