Wednesday, June 5, 2013

My morning walks

I've been walking in the morning in 90-100+ degree weather.  I try to walk everyday, but the nearby streets are getting boring.  So I started to walk above the metro line.  I've gone north 3 metro stops and south 4.  Then I take the metro back.  Now I'm getting on the metro and taking it to where I left off and walking another 2-3.  Yesterday I walked 5K.  I can only tell because I quit at Qutab Minar (WikiPedia Link) so I could plug our hospital in as the start and Qutab Minar as the end and ask google maps to tell me how far I walked.  I only quit because I ran out of water and the metro was near by.  And it was very, very hot.  And I was probably out for 2 hours in the sun which is tough even with a hat and #50 sunscreen.  I know that my rate of walking isn't very high, but again, it is really, really hot.  I got Gatorade, Barbara, but it didn't do the trick yet of preventing a dehydration headache, if in fact that's what it is.  I'm an experiment in progress, so I'll keep trying and gather more data.

I do yoga here at the hospital.  I asked if I'm doing something wrong that when I cross my legs (yoga style) the knob on my ankle was getting sore from being pressed into the floor. The teacher took my foot and pressed various places looking asking where it hurt.  Since I wear shorts, sneakers and socks outside, my bare feet and bottom part of my legs don't get tanned.  The teacher asked if I had a hemoglobin disease.  No, I said, I'm just that color normally and I'm here because my wife is sick, not me.

I saw someone get a traffic ticket yesterday.  I don't know which rule she broke.  I didn't think there were any rules.

On one walk, I saw a bicycle truck full of dirt getting on the freeway.  THE FREEWAY!!!  Maybe it is just an elevated extension where 2 large regular roads intersect and a rotary wouldn't have done the trick but in any case everybody else put the pedal to the metal when they go on that part of the road.  He's taking up most of 1 of the 2 lanes.  He's peddling up the ramp with maybe a quarter or half ton of dirt and rocks on the bed of his bicycle.  And it's 110 degrees.  The people are honking behind him - not flipping him off, but informing him there are people behind him.  He's off the seat, standing trying to peddle his hardest and everyone else are going around him beeping.  He didn't seem to care.  The guys behind him didn't seem to care either. 


 Above you see a Tuk Tuk driver fixing his ride.  The guy holding up the left side is the passenger and you see the driver squatting behind it, contemplating the problem.  Actually the passenger isn't holding it up, but applying a little upward pressure to make sure it doesn't come down.  It is balancing on the front bumper front wheel and one back wheel.  Since it is 3 wheels and it isn't heavy, tipping it up doesn't seem to be a big deal.
Above, here is one of the few cement trucks around.  Usually they have the sand, stone and cement delivered to the street and make the concrete manually.  I couldn't believe the driver here.  He just stopped in front of the fruit stand and his helper got out (not even jumped out for a quick stop, he pretty much ambled out) and bought some fruit.  They blocked 3/4 of the 2 lane street.  That didn't stop people from squeaking around and I couldn't tell what protocol they used for who gets to use whatever's left of road: the ones going the same direction as the truck or the opposing traffic or every other.  Also note that the fruit vendor has his wagon in the street too, constricting traffic even more.

By the way, they make blacktop on site too.  They have  a combination tar kettle/mixer on a trailer, rounds of tar and piles of gravel which they heat and mix into blacktop, apply it by the wheel borrow full and smooth out by hand.  It seems like there are enough people around to do anything and everything manually.


Speaking of concrete, here's a pile of rocks and a dozen empty yellow bags.  One guys shovels the gravel into a bag held by the hauler.  They are climbing to the 4th floor of this building.  Since they number floors starting with 0, this is 5 stories up.  It's 110 degrees out.

The blue boxes on the back are the hot chambers for a fleet of Domino's Pizza delivery motorcycles.  This is how take-away (not take out) food is delivered.  Even MacDonalds delivers.  Sometimes it is just a bicycle and a plastic bag, but everybody seems to deliver.

These last 2 pictures are of a computer market I've gone to.  In the second one, you see HCL, the sign is the width of a shop.  They vary from 5 feet wide to 20.  The depth ranges from as little as 4 feet, just enough for a guy to sit with some shelves with parts behind or beside him, to an air conditioned show room.  The umbrellas in the center are for the vendors who probably pay a fee but don't have anything permanent.  They schlep their stuff in and out every day, but Sunday, when the whole place is closed.  They have all the computer parts you'd ever want in market shades of white, black and gray, except for my laptop's power supply.  I'll get it any day now, as it was in Mumbai.  And cell phones - I'm getting an old one unlocked for $12.  Guys are on the street giving out handbills for software.  Like barkers at a carnival.  One thing they are pushing is their anti-virus software.  Who would want a pirated anti virus software?  Or an off brand one?  Seems like a recipe for disaster - might as well give him my credit card.

Finally I want to point out that our toilet paper and dish detergent touts it's "German Technology" as a selling point right on their respective labels.  I'm not sure why the German Technology in these two areas have an elevated caché, but I wonder how they figured out that using German technology sells more soap in India?  Unless of course that German Technology is in fact superior in it's cleaning and wiping abilities and not just a created mystique.

Tuesday, June 4, 2013

New Look!

Hi folks!

Ryan here. I just changed the layout because commenting wasn't working for some/most/all readers some/most/all of the time. This should fix things, but if there are still issues shooting my mom an email (with screenshots) will definitely help us debug it. And don't forget, you can't spell debug without Deb! Sorry, that was really bad. so sorry.

Happy reading!

Day 35 - Tuesday Triumph!

Tuesday yielded some good results.

In my morning PT, Varun had me walking across the floor to my walker. He had his hands gently on my waste, from behind.  I could feel him and that gave me confidence.  After a few steps, his hands were no longer touching.  It was scary but rewarding. I took teeny, tiny baby steps.  

In OT, during my tongue exercises, I asked if I could try to say "Om."  It's really Ooooooooooooooooommmmmmmmmmmmmmmmm. Normally, my first one is just ok and not always.  It's usually very cracked.  Oo oo oo oo oo oo mm mm mm mm mm.

Well today, after not trying this exercise for 2 or 3 days, I belted it out like an opera singer!  The other OT doctors in the room, stopped to listen.  No one was more surprised than me!  Swati, my OT doctor, said "again."  So I did it again, the same, they were now smiling & applauding.  I did it a total of 6 times, like never before.  We were all amazed.  A good boost, for sure.

I gave blood & urine in preparation for tomorrow's procedure. Very thorough here.

I met the new US Lyme patient today. Tracy is from Boston.

Watched "102 Dalmatians" tonight with Glen Close and now "The Proposal."  Both tickled my fancy.

Melatonin tonight, yah!
xo



Day 34 - 23andme

Monday evening, instead of blogging, we had a Skype conference with a woman named Sterling Hill who works for MTHRFsupport.com.  She is well versed in epigenetics.  She explained my results to me.

Let me back up.  About 2+ months ago, I was asked by Shawn Bean to send away for a "23andme" kit to submit saliva for genetic testing. It took about 6 weeks to receive an email saying that my results were in.  They have a neat website at, you guessed it, 23andme.com!

Each gene result is color coded: green-no problem; yellow-partial gene defect; red-total gene defect.  

The good news is that new research shows that even though defects exist, both tailored eating & supplementation can correct issues.  Wahoo!!

Sterling reviewed each partial & total gene defect with me.  A long list!  I could follow along, but was only able to take scant notes as the PC had Skype and my iPad had the report. So notes were in between breaths on my iPad.

So --- I have trouble creating glutathione with one defect and trouble processing what I do create with another.  I have trouble with ATP, which is for energy. But I've had super energy my whole life until becoming ill with Lyme.  I think this means that those genes were not expressing until I became ill. Maybe, as the lingo is new to me.  Out of 7 different ATP genes, 4 of mine have partial defects.  

I have issues with B-12 and I need it.  Also, issues with folate and choline.

I need Vitamin D3 support and this is after I've been taking it for a few months.  Sterling suggested I look at my ammonia levelsvfrom another test I did. It's on my 'to do.'

Now, Shawn Bean needs to review my results, make recommendations and then Skype with Geeta.  (Notice, Skype is now a verb like Google!)

I wait, NOT so patiently.  Those who know me well, know that patience is not my strong point.

23andme offers more than gene defect reports. Almost all genes listed have a link to peer reviewed documents.  They provide hereditary conditions, health risks, drug response, health tools and ancestry composition.  I elected to share my gene info and was contacted the next day by a fourth cousin near Russia!  We exchanged some info.  Pretty cool.

Ryan, you are next.  I may have given you some crappy genes and you should know about them at your age, healthy, so you can eat & supplement for your defects.  I'll pay, it's only $99!  Just blog "Yes, Mom."  :-)

I now know why my father was an alcoholic.  An incorrect balance between GABA & Glutamate due to certain gene mutations (if I remember correctly).  This can be a HUGE CLUE for some with alcoholic family members!

Sterling was quite I'll with Lyme & maybe more things 6 years ago- spent major time in hospitals.  Now healthy, helping others.  She lives in Oklahoma.

I hope you found this informative!

Sunday, June 2, 2013

Day 33 - Spa!

Wow, do I feel refreshed!  Spent 2 hrs at a day spa called "Asian Roots."

There was soothing music playing in a well decorated front office with 6 vases of small red flowers, 3 to a shelf, behind the counter under some dim lights.  Three friendly woman smiled, one took charge. Robbin told her my name and handed her directions that I had typed up for my treatments.

First, I got my eyebrows done by threading.  The woman holds thread and cris crosses it, so it acts like a scissor.  Also had my unfortunate mustache & a few chin hairs threaded - that's from my Italian side!

This was followed by a pedicure deluxe, where my feet were soaked, scrubbed & exfoliated. Since I takes showers in India, having my feet soaked was a real treat!  This was done by a jovial man named Dinesh. He rid me of my callouses and massaged my feel & legs; very relaxing. He cut my toenails and cuticles and then applied 1 coat of light pink polish.  Lightest of their pinks, but darker from what I would normally wear.

At some point during my pedicure, a woman set up shop and began my manicure.  I'm sure this was a challenge with my left hand claw.  But she cut, filed and then I soaked my fingers in 2 large bowls of warm water.  After my cuticles were trimmed, she followed with a 'finish' file to make them just right.

Next came my haircut.  Thus far, everything had been done in the wheelchair.  Robbin was nearby now so he got me up and into a fancy chair for hair washing.  The large white sink was adjusted to my neck height and then the feet of the black leather chair scooped up my lower legs via a remote control.  The wash included an extraordinary head massage.  Lucky me!

A stylist came in and I went to his black leather chair.  He brought in a black leather & chrome stool for my feet. I had my back to the mirror confident that the instructions I had typed up would be followed.  He began cutting and tapered the back as he didn't like it blunt. He said it would take time to look right.  

He took his time as my snow white hair fell onto the black wrap I wore.  He fussed with the bangs I wanted and chopped my top with thinning scissors to give it some shape.  He used a blow dryer to remove hair from my head, wrap & face.  As a final touch he massaged some cream or gel into my hair as he styled it with his fingers.  No spray.

All in all, a 2 hour experience for 2000 rupees ($35)!!  Plus a tip.  (Lisa, I'll email you the address for your December trip.)

Our 4 hour taxi was waiting to bring us to the DLF Promenade Mall about 15 - 20 minutes away.  We went inside where security waves a wand to search for guns on each person who enters.  It is accepted as the norm.

We specifically came for a store called "Food Hall."  We couldn't find it a few weeks ago.  We bought 2 goat cheeses and feta cheese made from sheep for me; a smoked pepper cheese for Robbin.  Salted almonds and some pistachios too.  We found gluten-free chocolate biscotti & shortbread as well as 2 bars of Cadbury chocolate for Robbin's sweet tooth.  Oh and some hot sauce.

To give you some idea of prices: cheeses ranged from 360 to 610 rupees ($6.40 - $10.89). Shortbread 240 rupees ($4.30).  Biscotti 550 rupees ($9.82).  Grand total - 3346.60 ($59.76) for some yummy snacks!!

Driving back to NuTech we passed donkeys on the street.  Sorry, forgot the camera. 

Dinner was lamb biryani, it was pretty good.

Movie was Paycheck with Uma Thurman & Ben Affleck - also good.  

Esther and another sister came in for night time meds.  Robbin gave headphones to Esther and she put them on wrong, so he fixed them on her head as she said funnily, "I'm from a village!"  We were laughing.

Ryan, if we were going to arrange your marriage, as they do here in India,  Esther would surely be on the list.

xo

Saturday, June 1, 2013

Calling all Testers!!

Ryan's suggests using Google Chrome as the browser when accessing the blog.  He wants to see if that will allow comments to get posted.

Chrome.google.com

So many of you are computer experts - what say you?

If you test, please let me know if it works either way.

Thanks!!
Deb

Day 32 - Saturday Stuff


Today, I had morning OT at 10:00 & PT at 11:00, they both went over as there are no outside patients on Saturday.  I still have not met the new Lyme patient from the US.  BUT - on a closed FB site for current & ex- patients from NuTech, I meet a woman named Shannon.  She posted a picture of her gym workout, thanking Dr. Geeta Shroff for getting her there. I wrote to her commending her efforts.  She wrote back and after a time asked if I had met her parents, Lola & Eddie.  YES!  I have!!!  Small world, yet again.

Today I had my 1:00 procedure.  Lifted on to the gurney; I am getting use to it - somewhat.

The procedure included the anesthesia injection-30 secs worth.  I watched the clock and then wondered why.  Then, a 5 minute wait.  I closed my eyes, fatigued again.  Dr Nash cleaned the area and then draped a small cloth with an opening over the area of my lower back.  He inserted the injection needle and I felt pressure.  It must have been a long needle as I felt pressure for a while.  Then he injected the stem cells and it was over.  

Next, the men left the room and a sister did the stem cell for my malabsorption issue, very gently.  

Finally, the doctor returned and meticulously cleaned my PICC area and added new dressing.  Very well done.  Cynthia, my NJ PICC nurse, would be proud!

Back to the room at around 1:30, I needed to lay flat for 2 hrs, confirming my theory of a larger needle with more stem cells.  I slept for almost the whole time and awoke starved as I only had breakfast!  Ahba cut my food and warmed it and I gobbled it up.

Afterwards, Ahba sorted the laundry for pickup.  She counts each piece and then recounts it upon its return.  Our laundry is hand washed - whites & colors separately.  It is likely pressed as we have all 100% cotton clothing and there is not a wrinkle to be found. Likely hung dry as there is no shrinkage. It is folded with perfection and returned ~3 days later.  We pay by the piece.

Next, I enjoyed my daily hand and arm massage to stimulate my muscles.  I was on my back and afterwards dozed again awaking close to 7pm.  I ate dinner as Ahba left for her 2 hr bus trip home and her one day off.  Today, she put a cross, blessed by Mother Teresa, in my pillow case.  We agreed I would return it when I left India.

Tonight, I watched "Confessions of a Shopaholic" - I thoroughly enjoyed it. Robbin has been selecting my movies and doing a damn good job!

Tomorrow, I will get a haircut, manicure & pedicure - eyebrows too. Looking forward to it.  I'm sure all the ladies understand. Hopefully, we will go to a mall too - if my energy holds up.

On the Roche front, my best bud - Javier, is now in Basel.  He will be joined by Denise and their 3 young children, mid month.  What an adventure!  Chaotic now, for sure.  I know my Basel friends will watch out for him.  Good luck Jav!  Be true to yourself, that is why they wanted you there.

xo