iPad?

Oi!  It makes my head hurt to think about replacing my stolen laptop for my summer blogging.  So I'm thinking iPad but trying the phone to see how it goes first. 

How's that for the most uninformed post known?  At least a funny for your trouble....

No MS 150 ride for Carl this year

Around Christmas Carl had a neurological event either related to his Chronic Inflammatory Demyelinating Polyneuropathy http://www.ninds.nih.gov/disorders/cidp/cidp.htm or Guillain Barre http://www.ninds.nih.gov/disorders/gbs/detail_gbs.htm but more likely a cousin to one of these as his symptoms do not fit neatly into a box for either. The treatment for either problem is the same, and today he starts his third monthly round of three day infusions of Gammunex.
http://www.google.com/url?sa=t&rct=j&q=gamunex&source=web&cd=4&cad=rja&ved=0CEwQFjAD&url=http%3A%2F%2Fen.wikipedia.org%2Fwiki%2FGamunex&ei=YEUiUan_C4_c8wSi1YGYCg&usg=AFQjCNHRnCOohM8MxluDOMoPyzNO-nyVaQ&bvm=bv.42553238,d.eWU

His October surgery for lumbar bone spur issues fixed his left leg problems and he was rebuilding strength in the left leg. Then at Christmas he lost strength in the other leg. He has the same leg quad failure as before with falling because the main nerve in his right quad is not communicating with his brain. He probably has an auto immune disorder with his antibodies attacking his nerve insulation instead of protecting it, and the infusion attempts to overpower his antibodies with others gleaned from donor plasma. Very expensive. Thank you all who are still working for paying your medicare taxes.

We are hoping that his problem is acute rather than chronic, but only time will tell if the disorder will be short lived or long term. In the world of strange but true medical opinions, the two events in his legs could very well be only slightly unrelated.

He uses a walker to stabilize his walking and last month we bought a wheelchair so that we could attend events without fear of falls. He is in aquatic therapy to try to keep his muscles going.

All is not negative. Thank heavens for living near a major medical center with so many options We have discovered a new appreciation for our relationship and an acceptance for “it is what it is”.  In the world of medicine and therapy there are so many kind people, people who go out of their way to help and make things better.  It never ceases to make me appreciate what we have, from the physical therapist who gives guidance and pep talks to the security guard who walks Carl in to infusion therapy to the technicians who do their best to serve every day. 

Carl  tries as hard as is humanly possible to stay positive, and we are both sure that we will look back on this event as a bump in the road. It has given us so much insight into the life of handicapped people.

Carl is really dedicated to continuing to raise money for the MS movement even though he cannot ride.  This condition has made it more important than ever to help other people out of their wheelchairs.

If you want to help us on our MS 150 campaign for this year, visit http://main.nationalmssociety.org/goto/TeamLincoln2013

We also welcome and appreciate your well wishes and prayers.

Faith

My walking buddy says she met a man who called himself a Possibilitarian.  When it comes to the divine, no one can prove or disprove anything, so anything is possible, he said.  I like the thought of that, believing in the possibilities. 

My husband Carl has always believed in the existence of the divine.  He believes that many chance occurrences in his life are evidence of the guiding hand of the divine.  As for myself, I have always considered good things in my life evidence that I am lucky.  True, much of what I consider luck could be the result of trying to do the right thing.  But how can I not believe in luck when I was born female in an age and a country where a woman could actually get somewhere by doing the right thing?  A Buddhist would say this is my karma ripening from the spiritual work of a previous life.  Who really knows?  After all, anything is possible. 

I believe it is possible that Carl’s Dad Fred came to see him right before his back surgery to tell him everything would be all right.  Why not?  Fred certainly was correct that things were going to be okay.  Things that have bothered Carl for years are cured.  Carl even calls it miraculous. 

This much I know to be true:  angels have been watching over Daisy lately.  During the days before surgery when Carl was in pain, he got an urge to take Daisy to the blessing of the animals on St. Francis Day.  We’ve never done this, so I don’t know why it was so important this year.  Maybe Fred was working on him again.  Fred dearly loved St. Francis’ prayer.  But an outing that day proved to be too much for Carl and the day passed without a blessing for Daisy.

Then two little miracles happened.  One, Girl Scout friend Rebecca volunteered to take Daisy home for a slumber party the night of Carl’s surgery.  I knew Daisy was loved and taken care of, and this was a gift.  Then, a few days ago, a letter came from Rebecca’s Mom in New Hampshire.  It read:

“I thought you’d enjoy seeing that I used a nice picture of Daisy from our Christmas visit in an ad I prepared for St. Andrew’s Blessing of the Animals.  Although Daisy wasn’t present for the event, I think you can consider her well blessed. “

Yes, Daisy has been blessed, and so have we.  With a little faith and many good people doing the right thing, anything is possible.

How the Medical Center is like Paris

Today I would be touring Versailles if not for the very necessary lumbar surgery that came up for Carl.  His nerves are so restricted that he can’t walk and today is fix it day.  A friend suggested we not cancel the trip and just take a side trip to Lourdes for a miracle in lieu of surgery, but before we could have gotten to Lourdes, god the Neurosurgeon is at work.

Carl came home from our summer of 250 miles of bike riding at elevation in Colorado to find he couldn't shift his standard Corvette.  Things deteriorated from that point to unbearable pain, lots of falls and total loss of his left leg. We met god the Neurosurgeon after a steroid pack, five steroid infusions and a steroid epidural failed to get Carl back to normal, these accompanied by three MRI's and a CT scan.   His neurologist made the referral and said that the surgeon had god status in the medical center.  I've chosen little g, and big N.  god the Neurosurgeon says he's pretty sure he can fix him. I'm counting on it.

I am struck by the beauty of the medical center not three miles from my home.  It has its own arch de triumph and fountains, le Metro, and The Sorbonne on Main just across the street.  Not Paris, but majestic in its own right.

After Carl gets wheeled into pre-op I take a walk on the Rice campus (the Sorbonne on Main) and just like an old timer marvel at the changes in the last 40 years.  Almost no open spaces remain.  I wander by the new Weiss College, on to Tudor Field house (didn't that used to be called just ‘the gym’?) and across to the Turrell sky-space installation.  From there it is an easy stroll to the RMC, where I could have stopped in the coffee house, the convenience store, or at the fresh Chinese food stand.  Instead I stroll into Sammy’s where Droubi’s Mediterranean serves a pretty decent hummus with fresh pita.  

I take my time wandering toward Main Street and pass an amazing temporary pavilion being erected for the 100th anniversary homecoming in the space in front of Lovett Hall.   After being temporarily distracted with this faux structure, I head toward my nostalgia stop, Brown Commons, to find it converted into a student health center.  The new commons is an architectural marvel, a three forked dining facility for Brown, Jones and Martel, separate dining halls all sharing a central self serve cafeteria.  Fresh fruit salad on the salad bar, can you imagine that?  Probably tastes the same in a week, but it looks more appealing than the one entrée food service of my past.  I enter the commons by tailgating on the kindness of a student.  Keys and pass cards are required for entry into the residential areas.  No more wide open doors.  Oh to have attended Rice in the coed era.  Guys and gals eating and sharing friendship is such a fine idea.

After a two hour walk, I settle back into the family waiting area looking at the Mediterranean Sea pasted over the windows, glimmering with back-lighting   I'm not supposed to get to the Mediterranean on my France trip till sometime next week.

If I don’t get any news soon, I’ll take a stroll down to the lobby of Methodist, which rivals most fine hotels.  Maybe someone will be playing the grand piano like they were the other day when we came for a myelogram. 

I’m struck by the tradition of the family waiting room.  Some patients bring an entire village along to wait.  I’m sitting by Chester’s contingent from Orange holding bibles and wearing Texas Temples windbreakers, and I can’t help overhearing their lawnmower discussion.   Somebody’s in the market for a new one and Chester’s brother, the only male with four women,  is recommending a trailer that works great for his riding lawnmower.  The lady chewing Nicorette listens intently to his advice while Grandma is looking as uncomfortable in the Methodist loaner wheelchair as Carl did the other day when I wheeled him all over for his pre-op visit.   They say Chester is here for colon cancer surgery and the surgeon got it all, but he’s having trouble waking up so they can talk to him.   Chester’s a lucky guy to have all these people cheering for him.

Sitting in the waiting room is a bit like taking an overseas flight.  We were required to check in three hours before boarding and were told there would be a delay of undetermined length.  Finally we boarded pre-op three hours and forty minutes later.
   

I’ve been on this flight seven hours now and feel like surely it is time to land.  I’m definitely feeling jet lagged.  Why we continue this waiting room ritual in the age of cell phones is beyond me.  Maybe the surgeons like the walk of triumph, strolling in to inform the family that the loved one is just fine and they fixed everything.    I think texting would be fine in the case of a successful outcome.  On occasion the news is not so assuring, but I have not witnessed one of those events today, thank goodness.  I can remember my mother reporting such news about a distant relative:  “They got in there and when they saw how bad it was they just closed him right back up and sent him home.”

I have a very strong urge to press a call button and scream, but that would wipe out all the merit I have accumulated being patient.  Only so much being still that I can take.  Instead of pressing panic,  I wander over to the coffee maker and select the flavor named Eiffel Power.   Then I check in at the desk and the concierge calls OR for me.   Some surgeons mind a phone call, some don’t.   Our god the Neurosurgeon is not on her no call list. The word is they are still working on Carl and he is fine.  Wow.  Long procedure.  The female anesthesiologist from Uruguay has a big job today keeping Carl just below the surface.  And I can see how there’s little pleasantry left for office visits at the end of a day like today.  Don’t care if the surgeon has no touchy feely in him.  Just give him good hands and eyes and stamina.

***

Eight and a half hours after our check-in, god the Neurosurgeon says he is finished.  Lots of work done on three lumbar to open up the space for the nerves.  The technical explanation with details does not follow.  Man of few words.

Carl will be in recovery about an hour.  Guess I’ll take that lobby stroll now and soon enough I will know if his leg works or doesn’t.  

***

POST SCRIPT:  god the Neurosurgeon was right; Carl is fixed.  Amen. 

Unintended Consequences with Epilogue

A year or so ago, the city had a sale on rain barrels, only $55 for 55 gallons. It seemed very green to get a rain barrel.    I put it right where the valley in the roof pours rain onto the patio.  It is a big beige detraction smack in the middle of things, large as a pony but not as cute.

Collecting rain is no problem.   With only .1 inch of rain, the barrel overflows. Using the rain, that's another issue.

Last summer when I got a huge water bill I calculated how much a gallon of water costs and how much the rain barrel could save me.  When I did the math on the rain barrel, I broke even on buying it after I turned the water over 100 times.  I was definitely not using the water enough.

So I bought a $40 battery operated timer and about $20 in drip plumbing so the rain barrel would water all my patio pots automatically.  I was making progress on the turnovers. After a rain, my system would run for a couple of weeks before the barrel was dry. But with the extra investment, I now needed to turn the water over 200 times to break even.  That would be 400 weeks, not counting the extra investment in batteries for the timer.

Then it quit raining and I was preparing to leave town on a long trip.  What to do?  If the barrel emptied my plants would die.  So I bought another timer that fills the barrel from a faucet automatically.  Of course that timer won't know if it rains and I don't need water, but it seemed logical at the time.  It wasn't the only reason I bought that timer, and the extra valve for the rain barrel was only $15 more.

You see where I am going, yes?  I am never going to break even.   I am not sure the barrel will last that long since it already had a leak that Carl repaired. (Add $6 for a can of car undercoating he sprayed  inside to seal the barrel better).

For ecology's sake, I can live with the cost benefit futility of the rain barrel, but now it is causing me moral dilemmas. 

I noticed recently that the barrel was swarming with mosquitoes.  I could see hundreds of larvae in the water.  I pondered the situation.  I could drain it.  I could use it only in the winter when there's no mosquitoes and I don't need the water anyway.  I could poison them, but I don't like killing and pesticides.  Besides, I would be poisoning my dog and other creatures in my habitat who like to drink out of the saucers under the plants.   None of these solutions worked for me.

There was only one answer.  I bought a goldfish.  Only 13 cents.  But since the water in the barrel was being replenished with tap water, I needed de-clorinator also.  $6.00 for the small bottle. 

I put Mr. Goldfish in one night.  By the next morning, that guy had eaten 100% of the larvae.  What a super achiever!

But what would he eat between mosquitoes?  Suppose the word spread and the pests quit laying their eggs in the rain barrel?  Would I have to hire a fish sitter for the summer?

Back at the pet store, I found some vacation feeding cakes.  I bought about $20 worth that should last all summer unless he is gluttonous.   And I created a pulley system to bring the feeder up from the bottom of the barrel to refill when needed.  My wonderful housekeeper Rosa has promised to check his feeder and add de-clorinating drops.  No extra, she says.

I am not going to add to the break even analysis.  Seems pointless.  All that is left is to wrestle with my conscience over the death of thousands of mosquito larvae who would never have been hatched if I hadn't bought a rain barrel, nor dying before their first bite if I hadn't bought a goldfish.

And that is what is keeping me awake at night.

Epilogue:  On my return from vacation I found a missing fish and a very upset Rosa.  One day when she checked on him, he was gone.  It broke her heart that the fish walked away on her watch.  I can only surmise that with all the rain he swam out the overflow.  Probably right into the mouth of the neighbor's cat who took up residence in the yard while Daisy was gone.

And the rain barrel is leaking again. Won't hold water.  This time, no repairs for me.  I'm done with green rain barrels, mosquitos and fish.  And sleeping soundly.

Anyone need a six month supply of fish food?

Rules of the Road

Rule Number One:  If the map says gravel, it means washboard.  The map should also read NO RV's!!!

Most Coloradoans will be flying down the washboard road  in their four wheel drive vehicle, but for Teragram, max speed is 7 mph.  Even then, the entire cabin will be shaking and rattling like a jackhammer.  The 33 miles from Cripple Creek to Florence took close to four hours.  The scenery of Phantom Canyon is beyond description, with the road following an old rail line to the gold camps, complete with tunnels and shelf road turns without guardrails. (first time I understood what shelf road means: it's a tiny shelf on the end of a moutain).  For the passenger, the trip is either sheer pleasure or torture.  Depends on the tolerance for the feeling of falling over the cliff.  For me, more torture than pleasure.  I love amusement park rides, but they last 30 seconds, not three hours.

At the end of this drive, I made the not so brilliant plan to drive two more hours to Villa Grove Hotsprings, reachable by a 7 mile washboard road.  In the morning, Carl said he was about to drive his last washboard out of there.  He said that while I was clinging to the armrest for my life, he was visualizing all the repairs he was going to have to make from the shaking and rattling.

Rule Number Two:    Don't listen to the weather report.  It will freak you out.  If you are driving across Kansas and listen to reports of twisters, you still won't be any wiser.  Do you know what county you are driving through anyway?

When I listen to weather reports while traveling, I cannot wrap my head around the phenomena.  Hearing that a mudslide closed a highway I just traveled, or that there are rocks on the road somewhere just jingles my peace of mind without providing an alternative plan of action.  We drove through Cache la Poudre Wilderness right after it opened when the High Park wildfire was finally contained.  Two days later it rained and the burn scar turned into a black coal mud slide bigger than the ashes of all the chimneys in the Midwest the morning after Christmas.   Try driving into that.  I'd rather have a hurricane any day.  With a hurricane, I know it is coming for a week.  There's no surprise attack of a flash flood or flash fire with a hurricane.

Worrying about something over which we have no control is pointless. The best solution to the weather is to get up early and do what we want to do.  If it doesn't rain in the afternoon, we have a bonus time to do something else.  Like drive into a sandstorm.

Rule Number Three:  Easy is relative

When a hike is marked easy, my Texas mind thinks strolling in flipflops.  Not so in Colorado.  Easy means hiking boots and poles.  Easy means boulders in the path are no more than 24 inches high.  Easy means I will change elevation, at least 600 feet, during the hike.  Easy means being prepared to spend the night if necessary.  Moderate means I will have to chin up to get past a waterfall.  Strenuous, I'm not sure, since I would never ever consider strenuous.  Handicapped accessible is still universal.  Except at 10,000 feet, even handicapped is relative. 


But I can't go wrong if I prepare to the max and enjoy the views.  Colorado hikes are built for looks, not for speed.

Rule Number Four:  No middle ground.  Colorado is either a thrill ride or a mind numbing.


Most days I am gripping the door handle as Teragram careens around the mountain roads.  Occasionally, it is the opposite, talking Carl into staying awake through the San Luis Valley, akin to driving the San Joaquin Valley in California, sans artichokes.  


The draw to this valley includes three hot springs, The Great Sand Dunes, and a bike ride we flatlanders crave.  At the Sand Dunes is a ride advertised as flat and without traffic, stretching from the Visitor Center to the San Luis Wildlife refuge.  26 miles if we do the whole ride.  Flat, like Katy  rides with elevation.

With this view, there is nothing to do but pedal and count.  3 cattle guards.  17 passenger vehicles.  3 Rv's.  1 cattle trailer.  18 material haulers, all of them blowing me off the road and only the 18th one feeling the need to honk at me (I think the rider who said no traffic rode on a weekend without the material haulers).

Zero wildlife.

I recorded my best bike speed ever.  The ride gained about 400 feet over 8 miles, and on the return it was slightly downhill.  My speed averaged over 12 mph for the first time in my life.   Flatlander at 7500 feet, bring it on! I have grown lungs!

Rule Number Five:  put the cheap bike in the back.

Luckily, this is where Carl put the bike I am riding, which is worth about 10% of the value of his bike.  When he backed into the utility box, it bent the frame of my bike beyond repair but only totaled one of his rims.  His frame is fine.  Which is a good thing, considering how hard it is to find a titanium bike repair facility.  When he bent it a year ago he shipped it to Portland, where the shop seemed to be out of business when the bike go there, so he had to ship it back home. Then we took it to Chattanooga.  It's not an easy bike to fix and it is too valuable to throw away.

Carl is bummed.  I'm bummed that I wasn't spotting for him.  But in the end, it's just a bike.  I was considering getting my own bike that fit me this fall anyway.   My tour de France training has ended for the season, however.  


Rule Number Six:  depend on the kindness of strangers.

In five years as nomads, we have never had a mechanical breakdown till 60 miles into Poudre Canyon.  A belt shredded and took out the transmission coolant line with it.  We were disabled miles from nowhere.  Cache la Poudre  is a designated wilderness.  What a canyon. Within the depth of the canyon walls, there's no cell service.  


A good Samaritan fisherman stopped to help.  He took me to a call box down the canyon and waited for me to call AAA.   I considered calling AA too, but realized I really would want a drink when this was over and this was no time for abstinence.




Dave, I hope you are reading out there.  Thank you for your random act of kindness.

    

Thoughts of an underprepared Girl Scout

If a trail is marked hikers only, horses are not allowed.  Seemed like a good idea to avoid the horse patties on the trail when I took the hikers only Bierstadt Lake trail in Rocky Mountain National Park.  Rookie mistake.  I soon learned that if a trail is not good enough for horses, it's not good enough for me.  That rocky hike measured 3.6 miles on the map but 5.4 miles on my pedometer.  Tiny, slow, careful steps all the way, one rock at a time.  I whimpered a lot.

One  thing about a trail like this is nobody else wants to hike it.  I had it all to myself.  For three hours and twenty minutes.  And that gave me lots of time to think.

Like, what about bears?  Did the sign back at the ranger station say "stand your ground" or "step slowly backwards"?  I think I am supposed to stand my ground. That's a better plan anyway since I cannot outrun even a toothless old bear on this terrain.   And noise, I am supposed to make noise.  Don't have any pots and pans to bang.   What else can I do?  I remember that like a true scout, I have a whistle clipped to my fanny pack.  Good, I will blow the whistle at the bear.  Hopefully I won't see one so I never find out whether a whistle scares or just irritates a bear.


Times like this, I wonder how prepared I really am.  My boot sticks in a rock crack for a minute and I wonder if the National Geographic knife in my pack is sharp enough to amputate my foot to set it free.  If a giant thunderstorm hits, will my dry cleaning thickness plastic poncho keep me warm?  I really should get a space blanket, and next time I am in a camping store, I'll pick up those waterproof matches.  If I had started sooner, I wouldn't be wondering about afternoon storms.  Next time I'll get up earlier. I've gone through my peanut butter sandwich and a bottle of water, but I still have two power bars and another full water bottle.  Not enough to last for days, but surely I can live till the rangers find me and free my foot. Hope my power bars don't attract a bear.......


Luckily  my foot is caught for only a moment and I won't have to amputate after all.  Good to go through the thought process, just in case. 


These rocks are really slippery.  I could fall and break my leg if I lose concentration.  My years in scouting calm me as my mind rambles. I remind myself how prepared I am for emergencies.   I am positive I could splint my leg improvising with my hiking poles and maybe the bungee laces on my pack.  Back in my scout backpacking days, I fashioned a hiking stick from PVC.  Thank goodness I eventually upgraded to my shock absorbing Komperdells.  No way I could navigate these rock piles without them and they will definitely be easier to splint with than a tree branch.


I could use my bandana for splinting.  Every scout has a bandana, and I always carry mine.  How many of the 101 things to do with a bandana do I remember?  Hopefully all the survival ones.  I wish I had brought the bandana with all the first aid hints printed on it instead of the one with the trail markers. I don't need the trail markers because this trail is rocky, but it does have blazes on the trees.  They are about 12 feet off the ground, I suppose for snow shoe or cross country hikers.  This trail would be way less rocky under 12 feet of snow.  Wow, I hope I get out of here before the snow comes.  I did not bring any extra layers. 


I find comfort in remembering that I have my first aid kit, although I am a little fuzzy about what is in it.  Awfully small kit.  Probably no splint materials.  Bandaids and antibiotic ointment, probably.  Next time I should put some Prozac in the kit.  

I realize while hiking alone that I didn't bring the most important thing of all.  In scouting, we always take a BUDDY.   A buddy would sing with me as we hike. It's no fun doing hiking call songs with no one to answer me.  A buddy would make so much noise a bear wouldn't even dream of coming close.   A buddy would take my picture, so I wouldn't have poses like this:

Without a buddy on the trail,  the best alternative is to take the equestrian friendly trails.  Everybody likes to hike on those trails.  Families.  Dogs.  Seniors.  Lots of noise to scare away the bears. And I can hand my camera to a kid named Alex at the top of the hike to Lake Isabella, and he can take my picture.  Like this:

Here's my new buddy, Alex.

On the equestrian friendly trails to Emerald Lake, I might  meet Ranger Billy, who will also take my picture, like this:

My new buddy Ranger Billy:

See you on the trail, new buddies, wherever you are!