Lupus hasn't killed me yet!

I'm pretty open about my Lupus, it is hard to hide even on good days.  I walk weird when I get out of chair, I don't own glasses because my hands have trouble holding on to them so I only use plastic cups, I struggle with word recall sometimes, and use 2 eating utensils when my hands are shaky.  But for the most part, I am extremely fortunate and am having a great spell of remission.

A few weeks ago someone asked me when I was diagnosed and when I said about 11 years ago, she looked shocked and said "I'm surprised you are alive, I thought patients like you died within 5 years"  it was my turned to be shocked!  What a weird thing to say to someone!! Well I'm not dead yet!  My life span is likely to be shorter than someone without Lupus, but my doctors say I have a great chance at living a long time.  My heart and kidneys (two of the biggest causes of death of Lupus patients) are ok right now.  I have tumor like growths on my thyroid that make it uncomfortable to swallow sometimes, but I'm told they are harmless :)

I'm graduating from Grad school in May and turning 40 in July and my present to myself is.......
hiking the Inca trail to Machu Picchu!!!  I am so excited!!!  About 4 years ago I went on a running cruise to Alaska - we ran a marathon over the week (in stages - 10 miles in Juneau, 7 in Sitka, etc)  This event is like that - a marathon over the week.  It is a great chance to meet other people who are active and like exercise vacations.  I am still in touch with about 7 people from the Alaska trip.

I am a little concerned about how to train for hills and altitude in Mumbai.  I live 6 blocks from the Arabian see so I am AT sea level and there are 2 small hills where I live :)   I am buying hiking boots over Christmas and will be climbing stairs in my hiking boots!

This is another new adventure to add to my ever increasing list!

If you want to see what I am doing - here is the link 

Walking in the street

In the US we are taught to stay out of traffic - to never walk in the street.  Here the traffic is much more chaotic than at home, but it is often necessary to walk in the street among moving traffic.  Here are some decisions I have to make while walking.

Do I step over the people sleeping on the sidewalk or walk in the street?
There is a cow laying on the sidewalk so I have to walk in the street.
There is poop - horse, goat, cow, dog, monkey, or people poo so I have to walk in the street.
The roosters look really rowdy so I need to walk in the street.
There an angry man throwing coconuts at a man so it would be safer to walk in the street.
There is a motorcycle driving on the sidewalk so I should walk in the street.
Someone is shooting firecrackers out their window and sparks are falling down so it is safer to walk in        the street.
Some guy is peeing on the sidewalk so it would be better to walk on the street.
Someone is burning a tire on the sidewalk so it is safer to walk in the street.

A lot of these obstacles are present on the sidewalks AND street, but it is often a better choice to walk in the street.  So much different than home! 

Visa frustration

So there are a lot of great parts to living the expat life - I have a great job.  I get to travel a lot.  All of the great things balance out the fact I miss friends and family - that I miss birthday parties and memorial day picnics etc.

Then there are the days that all expats dread and they think about why they do it.  Different things can cause this, but it is usually frustration from the way your host country deals with certain things. 

I get my Indian visa renewed every April, but my passport is expiring this March so they renewed it only until January instead of April. You can only renew it 14 days before the due date, but I am going to be gone for Christmas break.  The school had to get special permission for me to get it early.  On Thursday, they said today (saturday) was the only day I could do it.  My friend Evelyn was spending the night on Friday - we were making Christmas cookies and on Saturday other friends were coming over to have a cookie exchange.  We also had plans to go to south Mumbai to go to an NGO fair.  The plan was to skip the NGO fair and be back from FRRO before people got to my house at 4. 

FRRO is weird.  You have to fill out this huge application online, then you bring a copy of it with you .  They take it and re input everything in to the computer.  augh!  they make you purchase a folder to put the papers in.  They have rooms full of folders instead of having things online.  It seems very low tech and old school.  BUT THERE IS A FINGERPRINT SCANNER FOR WORKERS TO CHECK IN TO WORK.   bizarre. 

It started off ok - I got there at 9:20 and since it was Saturday morning, it wasn't very crowded. I went to the counter and they kept repeating "maths teacher"  Maybe they didn't believe I was a Maths teacher??  There was a problem with one of my tax forms.  I had to call someone from the school.  1.5 hours later that was straightened out and I got to go in the waiting room. 2.5 hours later I get to talk to a lady.  She calls me over to look at my papers, then calls her friend over and opens a snack!  they chat away while she does one thing with my paperwork every 5 minutes!  augh.  The papers say I am working for the school until July 2014.  I am staying at the school for 2014-2015, but that contract wasn't in my file.  They were only going to renew my Visa until July and I was going to have to go back or I could get the papers and come back this week.  I called the driver and he came to get me and had a school liason with him. We are not allowed to bring people in to FRRO so if something goes wrong we have to go outside to talk to them or call.   So I told him what went wrong and he gets on the phone with people and tells me to go in and ask for a specific person.  That takes a half hour and then they say I can only get renewed to July.  I call someone from school, he says to take the short Visa.  I go back to the lady at counter 13.  She says she can't help me now - come back at 4.  um 4 is when people are arriving at my house for the cookie exchange party!  I text everyone and tell them 5:30 and Evelyn said she'd be in my flat to get ready for people. 

Ganesh takes me to lunch which is near when Evelyn was going to the NGO fair without me so she met me for lunch.  I go back to counter 13 and start the process of going to the copier to get things copied one rupee at a time.  I pay my money and she informs me that Since I paid for a whole year, I won't have to pay in July, but they will only extend it to december like it should have been today!!  Oh my gosh!  I am going to have to go through this all again!!   I left about 5:15 and got home around 6:15 good thing Evelyn was there to welcome my guests!

Frustrating day in which I got no work done.  I am trying to keep it in perspective - it is something I have to do to stay here.  The school sends us with people so that is helpful.  And I love my job!  so I guess it is worth it.   :)

Math workshop in Warsaw

Math workshop in Poland

I had the opportunity to start a two year program to become a Math Specialist.  Our first workshop was this weekend in Warsaw, Poland.  There were about 25 participants from all over the world- The Hague, Bucharest, Nairobi, London, Belgrade, Kiev, Warsaw, Zurich, Saudi Arabia, Kuwait….  It was really great to be able to talk to Math teachers from many different schools and get a chance to see how others do things.   It is also great to hear what it is like to live in these other places so I can decide where I want to move to next J

I got in Thursday afternoon and was amazed by the drive from the airport.  Very fall like – leaves everywhere, chilly, and too many parks to count!  I have a friend from Mumbai who now works here so we met up for dinner and he gave me the scoop on what it is like to live here.  I enjoyed just walking around in the chilly, clean air.

Most of us stayed at the Sheraton and the American School of  Warsaw bussed us to the school every day where we talked about AERO/common core standards all day.  We would get out at 3:45 and it would be dark already!!  The first night several of us went to a Polish pottery shop.  The stuff was so lovely!  I got a Christmas ornament, a Christmas bowl and some crosses.  We walked around the town and ate Perogies at a wonderful little restaurant.  After class on Thursday I went with some others on a city tour.  There was a huge monument to Chopin and all over the city there were benches that have buttons you can push that play chopin music.  We saw some of the palaces from the outside.  We went to the Warsaw Ghetto and learned about the uprising.

There is a Jewish history museum (not just Halocaust - all Jewish history). I wish I had time to see it)

Town square rebuilt. 

Marie Curie's house - now it is a museum

Jodhpur for Diwali

Jodhpur for Diwali

Evelyn's mom was in town visiting so she went with me, Evelyn and Emily to jodhpur.  We left Mumbai at 11:30 am on sat for the short 1.5 hour flight to jodhpur. I sat next to an American couple who work at the embassy and just got here two months ago.  They live near where I do and I got their information so hopefully I will see them again.  We took a rickshaw to the guesthouse - the ricks look different than they do in Mumbai.

We stayed at Hems guesthouse which is owned by a wonderful family. We climbed up a flight of stairs to the kitchen where the women were cooking and making sweets for the Diwali celebrations. We went up another flight of stairs to our rooms that each had a balcony. We put our stuff away then went up another flight to the rooftop restaurant that had had stunning views of the fort.  We had a lovely homemade lunch then took a rickshaw up to the fort and explored it.

On our way back the driver took us to a tea shop and the other woman listened to his spiel and perused  the tea while I rested outside. I sat on a stoop and the driver told me to move because people lived above there and it was a celebration and they were using candles and would periodically just throw the hot wax out the window onto the street.  Are you kidding me???  The streets in the old city are so narrow and crowded.  No cars are allowed. Indian chaos at its best  - motorbikes, ricks.  The beds in the guesthouse were very comfortable - almost as hard as my bed in Mumbai which is basically a pad laying on a slab of wood.  I could set a glass of water on one side of the bed and roll around all night and the water wouldn't spill! So the beds were comfy but it was loud! Indians love their fire works. Love them.  They are not pretty pop pop firecrackers with pretty colors - they are basically bombs or cannon fire. It scares the crap out of me. And makes it impossible to sleep.

Sunday.
We had a lovely breakfast of fruit salad and toasted cheese and tomato sandwhich. Yea! No Indian breakfast!  We walked around jodhpur a a little then got a car to take us 2.5 hours to the Manvar camel camp and resort in the Thar dessert. The resort is absolutely beautiful - a little oasis in the desert.  We chose to stay in the tents which were about a 15 minute jeep ride from the resort. They were canvas tents for two. And there were about 30 of them in a circle.  This was definitely more " glamping" than camping.  The tents were beautiful and had nice beds and a gorgeous bathroom.  The camp is only open from the very end of October to mid April due to heat and monsoon.  Since it is the first week of November it was hot during the day but chilly at night. In a few weeks, it will be COLD at night.  Lunches were served at the resort, but breakfast and dinner served at the camp.

We arrived early afternoon, had lunch, settled in huge tents and then went on a sunset camel ride.  I have been on a camel in Israel but we used a step ladder to get on a standing camel.  This was the first time I was on one while it got up and down. Scary!! Far scarier than rappelling down the 220 ft waterfall I did a few weeks ago! We were on the camels 30-40 min and saw an amazing sunset.  Every night they have a cultural performance with singers and dancers attaché camp. They set up these mats and tables with candles and pass out appetizers.  It got quite chilly so thankfully the dining tent was warm.

One of the great thing about India is the food- people love eating food from all the different regions.  People ask me about it all the time and look at me with horror when I tell them I don't eat Indian food.  I avoid it like the plague. But in instances like this I have to eat it because there is no other option.  I spent the first night in the tent bathroom puking.  And it isn't the food - no one else was sick.  My doctor thinks I have an intolerance to some oils and spices that are used -the problem is every region uses something different so I have no way of knowing what ts in the food or what makes me ill.  Last year I went to a village for ganpati and the women made food. On the floor. In their house. In the middle of nowhere.  I had to eat it and my friend was convinced I was going to die. I was fine.  Then I stay at super nice restaurants and barf. It's a crapshoot so my general rule is Don't eat Indian food!!

My friends went on a jeep safari and a worker drove me to the resort where thy let me use a room with AC for a few hours. Even though the tents have fans it gets really hot during the day.  My friends wanted to go on another camel ride(2 hours) - not me! So I went with a guy on a village walk and got to learn a lot.

Emily and I watched the the cultural performance from my tent and had a long chat with one of the workers.  He was very interested in life in our countries (Emily is Australian) He was shocked we don't give all our money to our families!  and that we don't have arranged marriages.  His daughter is 7 and he is already saving up her dowry for her wedding.  He is making that more of a priority than her education.

On tuesday we left the camp early in the morning to drive to Jodhpur. We had some time before the plane so we visited the Jodhpur Palace and a huge antique warehouse.  I got some great boxes for my nieces to save their postcards in.

Week Without Walls - 8th grade

Every year our middle school students go into rural India and for a week and work on team building and adventure.  For the last two years, I went with the 6th graders to Matheran.  This year I went with the 8th graders to Sajan and Dabhosa.   We left Monday morning for the 2.5 hour drive to Sajan.  The kids slept in 4 person tents and all but two adults slept in cabins



This is an opportunity for kids to learn to share a space and work out differences with their friends.  The tent area also had big areas for them to do team building games etc.  In the mornins I inspected the tents with another teacher and we gave awards for cleanest tent and best greeting.  Kids sang to us, danced, and hugged us.  Best duty to have!!







This camp was a place for them to practice there skills before we went on our big expedition.  The kids were broken up in animal groups.  I was a cobra with another teacher and 14 kids.  The food was a lot better at this place than the 6th grade place!  They did a Fox line, built a raft, used compasses and GPS devices to orienteer, kayaked, went to a village to paint, and rapelled down a dam wall.

Fox line - good thing Nilendra and I are working on my arms. 

They had to build a raft and float it in the pool. - test run for expedition

We went to a local village and painted a school. 

All geared up for rapelling. 

stepping over the wall was the hardest part!! 

I actually let Go!!

On Wednesday we took the two hour bus drive to Dabhosa - long bumpy drive!  On thursday we had an all day expedition - The cobras and I started with the fox line and kayaking, then we had to hike up a huge hill to the bunks.  A jeep took us to the raft building site.  They had to get all 14 kids on the raft and ride it down the river and back.  We had lunch there then used the compasses and GPS to find clues.  The last even of the day we rapelling down a 220 ft waterfall.

You can see the person on the fox line under the waterfall.  It was so loud and the spray soaked me. 

building a raft

It floated!

Here is how big the waterfall is.  220 ft. I think.  Getting over the big hump wasn't too bad,but about 1/3 of the way down you had to take your feet off the wall and free fall.  As soon as I let go, I spun around facing out and squealed.  AT the bottom you landed on a floating raft right near the waterfall and they kayaked us to the edge. 

You can see someone coming down. 

Our group had to hike this massive hill (it's about 5 or six time this height) twice.

On Thursday night we had skit night, talent show, and s'mores.  On Friday we packed up and took the 4 hour drive back to Mumbai.

Trip back from Maldives to Mumbai - always eventful

Maldives day 5 and 6

Thursday

I decided to go snorkeling again but this time covered myself with sunscreen AND wore a shirt.  Good thing I took my Dramamine because it was a 15 min ride to the reef this time. Saw lots of great fish and a shark!! The water wasn't has clear here and the waves were bigger. I lasted the whole time though!  I decided to go eat lunch at the restaurant. I'm about out of snacks and 12 hours between meals is killing me!

Glad I went, the food was great. I have eaten more fish on this trip than I have in 5 years.  Sat with a couple - the guy was French and the woman was British. Yeah!  She was surprised I was American because I sounded Irish to her :) ha!! She and her husband have come many times - this is their favorite resort.  Last time they brought their kids.  This time they came with their neighbors.  They have fish on the totem. :)

A cute family from Mexico sat with me tonight's or dinner.  My lucky day! More English speakers!  The guy was a pilot for Qatar air and they lived in Doha. They had a 15 month old, Isabella who was adorable and happily eating her dinner even though it was 9:30 and most toddlers would be cranky. It was Italian night. One of the dive instructors said it is always the staff's favorite meal.  He and another dive instructor shared some info about diving and how it works being an instructor here.


Friday

My plan was to snorkel again in the morning, but I didn't feel week- dizzy and fatigued. So I napped and read :)

Dinner was on the beach again and it was " white party night" every one was dressed in white except for about three people and we all had black on - happy others decided to go full opposite! I don't own white! It would be filthy in 3 seconds in Mumbai!

I sat at a table full of staff which I should have done since the beginning - they speak English and they are fun.  A French diving instructor was there, Christophe - the Belgium guy I met when I first got here, 4 girls from Bali who worked in the spa, and a girl from the Philippines Who worked in PR. They were fun and interesting and it was nice to not have labored conversations.  A German guy joined us later - he arrived yesterday and spends the day taking diving lessons.  One of the Bali girls was fascinated with Oktoberfest so he explained a lot about that.  It was a nice time for my last night.  I didn't stay for the party - really didn't feel that well. maybe the sun exposure was affecting me even though I used nearly a whole bottle of sunscreen for only 5 days.  

Maldives day 5 and 6

Maldives day 5 and 6

Thursday

I decided to go snorkeling again but this time covered myself with sunscreen AND wore a shirt.  Good thing I took my Dramamine because it was a 15 min ride to the reef this time. Saw lots of great fish and a shark!! The water wasn't has clear here and the waves were bigger. I lasted the whole time though!  I decided to go eat lunch at the restaurant. I'm about out of snacks and 12 hours between meals is killing me!

Glad I went, the food was great. I have eaten more fish on this trip than I have in 5 years.  Sat with a couple - the guy was French and the woman was British. Yeah!  She was surprised I was American because I sounded Irish to her :) ha!! She and her husband have come many times - this is their favorite resort.  Last time they brought their kids.  This time they came with their neighbors.  They have fish on the totem. :)

A cute family from Mexico sat with me tonight's or dinner.  My lucky day! More English speakers!  The guy was a pilot for Qatar air and they lived in Doha. They had a 15 month old, Isabella who was adorable and happily eating her dinner even though it was 9:30 and most toddlers would be cranky. It was Italian night. One of the dive instructors said it is always the staff's favorite meal.  He and another dive instructor shared some info about diving and how it works being an instructor here.


Friday

My plan was to snorkel again in the morning, but I didn't feel week- dizzy and fatigued. So I napped and read :)

Dinner was on the beach again and it was " white party night" every one was dressed in white except for about three people and we all had black on - happy others decided to go full opposite! I don't own white! It would be filthy in 3 seconds in Mumbai!

I sat at a table full of staff which I should have done since the beginning - they speak English and they are fun.  A French diving instructor was there, Christophe - the Belgium guy I met when I first got here, 4 girls from Bali who worked in the spa, and a girl from the Philippines Who worked in PR. They were fun and interesting and it was nice to not have labored conversations.  A German guy joined us later - he arrived yesterday and spends the day taking diving lessons.  One of the Bali girls was fascinated with Oktoberfest so he explained a lot about that.  It was a nice time for my last night.  I didn't stay for the party - really didn't feel that well. maybe the sun exposure was affecting me even though I used nearly a whole bottle of sunscreen for only 5 days.  

Maldives day 4 Maldivian night

Maldives day 4 Wednesday

My burned back still hurt so I decided to do nothing today. The owner came yesterday and met every guest.  He saw me this morning when one of the staff asked what I was doing today.  He said "if you are going to do nothing, do it well". I did!! Napped, swam, read...

Dinner was on the beach tonight - Maldivian night.  Maldivian food is a lot like Indian food but less spicy which is good for me.  An older French couple was at my table and when it was clear the woman spoke VERY little English and the husband none.. I pulled out my Hail Mary and asked if she spoke Spanish.  We were able to have enough of a conversation  in Spanish that I found out she has been to the Maldives 12 times! They have been to other resorts, but come to his one the most.  They have a fish totem pole here and when you have stayed 4 times you get a fish put on the totem and they have a fish ceremony for you!, I ask if she had a fish- she did, but somehow it disappeared (I asked if it was a storm and she said no, but kept making wind sounds and waving motions with her hands like it fell off - dang I wish I spoke some French!! ) she said she bought a new one and had it put up :). Turns put she is the sister of the woman who wouldn't talk to me yesterday!,

Some of the Maldivian staff danced and played music for us. Really nice night. I love looking at the stars. The night is so black here!

Maldives day 3 fish barbeque

Maldives day 3 Tuesday

I woke up a lot last night due to the pain of my sunburn :(. I had breakfast and read while laying in my hammock.  Every day they have a choice of eating a fish BBQ on sunrise island.  I don't have full board but decided to pay extra to try it because this not having dinner until 8:30 is killing me!!

Many people took kayaks over but I prefer to walk.  I have been walking over there for exercise everyday.  Walking in thigh high water is a good workout!  I decided to take my phone with me so I could take pictures. I was careful put it in a zip lock bag and put it in a water resistant pack on my back. Problem was I was going 3 hours earlier than normal and the water was quite a bit higher than I expected.  More like chest high so I had to carry the bag above my head.  I see quite a few stingrays on my walk over there will try to get a pic tomorrow when tide is lower :)

We had a lovely lunch of grilled fish, rice, veggies and a salad with cheese!  There was a family with 2 Kids, several couples and a big group of French friends.  One of the couples sat with me. The woman tried her best at English and said she likes to practice.  She was asking me questions about grammar " I have a friend that lived at the US - at or is it of" I told her "in" but she was doing great.  She asked me to correct her grammar and I told her I teach international kids and am very good at deciphering bad English. I don't speak a word of French. Maybe I will ask her if she speaks Spanish and I can be the one to work hard at a conversation.

I took a nap, read, see a pattern here?!? I walked out to the island again and saw kite surfers and sting rays.  I brought a jockey workout shirt made of light wicking material. Wanted to try swimming in it because I want to snorkel again but my burned back can't handle it.  I was afraid the shirt would float when I swam but it clung to my body so I think I will try snorkeling again!

Maldives day 2 snorkeling

Maldives day 2 Monday.

I slept really well and woke up, showered in the open air shower and went to breakfast. The restaurant is over the water with wood floors and wood beams. Breakfast was served buffet style with the food set on boats. It is a French place so bread and fruit were abundant. Disappointed there was no cheese though! I had yummy passion fruit jam on bread and a lot of fresh and dried fruit. I havent had dates and figs since I was in Israel. They also had glasses with pineapple and papaya diced into it and yogurt nearby that you could put on it. It is what I normally have for breakfast so I was happy.

I decided to try snorkeling for the first time. Many people at school are scuba divers. I have no interest in that but thought I could try snorkeling.  A very brown Frenchman fitted me for a mask and flippers then showed me how to snorkel. Once I got the hang of it I joined the morning trip. We took a five min boat ride to a coral reef. And it was really cool! Most of you have no idea what a huge accomplishment this was. I had a near drowning experience when I was 7 and haven't been they fond of water. I can swim now and do in pools occasionally but not a fan of natural water swimming.  When I worked at a Girl Scout camp in my 20s I put a life jacket on just to hang out with the other staff in the deep end.  To jump off a boat in the middle of the Indian Ocean was a very big deal!! The guy tried to calm me by saying we were in "shallow water" 50 to 70 meters!, not shallow!   It was neat to see the ocean turn from deep blue to teal.  Two other people were new to snorkeling and the woman only lasted about half the time.  I started to feel really nauseated even thought I took Dramamine before we went.  I was trying to figure out how I was going to balance myself in the water while vomiting :) I got in the boat but it turns out they pulled everyone else in after 5 min so I almost made it the whole hour! I came back and took a nap to help the nausea go away. When I woke up I realized my back was burned.  I had painstakingly put on 30 SPF and was only out an hour. Bad thing about going alone my suit had a keyhole back and I couldn't reach all the exposed skin I eventually used my toothbrush holder to spread it around.  Turns out all my back got burned whether I missed the spot or not.  Friends had warned me about snorkeling and my fair, red headed friend told of how he got huge blisters on his back. Ow! I will invest in a swim shirt if I go to more be beachy places.  I am fortunate I don't have the extreme photo sensitivity that other lupus patients have but I still have less tolerance than I used to.  The rest of me is getting nice and brown while I read outside even with sunscreen.

On Mondays, Wednesdays, and Fridays they serve dinner on the beach. It was really nice and they had a lovely dessert bar.  A older French woman and one off the staffers and I ate together. The staff woman is Mauritian and recently went to India so we talked about that. I heard her ask the French woman if the spoke English and she said that she did speak some but refused to do so!! The other woman and I talked about a lot of things and occasionally she would try to tell the French woman about it and it seemed like she understood but wouldn't participate. I travel alone a lot and usually have no problems meeting people but it has been tough here.

After dinner they started showing " up in the air" at 10:30. I lasted about 20 minutes!, the sun makes me sooo tired!