This is my story. In many ways this has been an awakening to what I am made of. What I am capable of with-standing and how to keep going. The culprit is CHRONIC LYME with it gang of co-infections. My upcoming trip to India, where I will receive Stem Cell Transplantation is my next step towards bringing my body back to good health. My journey will be documented here. I can offer insight into this treatment and keep my friends and family updated on my progress. Hopefully, I will also be able to offer hope and light a way for others who search for a way to heal.I thank you for your support, love and prayers.
May you be well-
Hazel Raby (Alderson)
Thank you to all those who made this possible.
You are forever in our hearts.
Your compassion moves through us and on into others.
Here is a little description of the Stem Cell Process I will be undertaking:
India Bound- March 28, 2009
It had been a rough few days symptom wise and it left me frazzled about my voyage. No less adamant about going but wondering how I was to face 20 hours of travel with severe nausea, dizziness, chest pain, drenching sweats, muscle spasms and numb frozen skin. If I looked at Michael or the dogs I started to cry. I managed to cram 3 freak-outs into our mid-morning preparations. We left for the airport in silence holding hands between gear shifts. Leaving our peninsula, I looked to the salt water marshes of granite green water full of floating ice chunks. I did a double take thinking Michael and Dr. Susan had got together and installed the enormous Great Blue Heron that froze over his reflection in a tidal pool. Over the past 12 years I have often had encounters at pivotal moments in my illness with these harbingers of aggressive self healing. This is their significance to the Native Americans....and to me. So here was this gorgeous creature arriving back from his winter retreat, before the ice flows had left to bade me farewell and to aggressively self-heal. It calmed me and gave me strength. Another gift on top of the pile of love, support and blessings I have received over the past 2 months to get me here. I have never felt this sort of momentum behind me. Divine momentum. I am carried along as it pushes obstacles out of my path to India.
I met up with my sister in Newark, New Jersey and she introduced me to the secret society of the President’s Club. Continental’s answer to the Wizard of Oz’s inner sanctum. Basically big comfy seats with a view of the inner hive workings of Newark airport, snacks, internet and shower potential. Then onto our packed flight to New Delhi. Due to Jenna’s maneuvering on my part I received a seat change to bulk head which translates into leg room....and babies. Lots of babies. Four in fact ranging from 2 months to 8. For the most part they were great, and I marveled at the “takes a village” technique of the Indian families. Grandpa was just as soon to take the fussing infant as was the mom or dad. All cooed, shushed and bounced in equality. I also find the Indian people very friendly, outgoing and a smiling lot.
March 29th. did not really exist for me. I know I will get it back on my return flight so I did not put out an A.P.B. We arrived at the clinic after a beepy, close-encounter ride from the airport and it was lights out around midnight with a little help from my traveling partner Ambien. 3 a.m I awoke with the click-click-click of what I took to be ice on the window in Maine. When I opened my eyes to check it out it was Jenna pecking a way on her computer. That was all the sleep I got as I could not fall back.
March 30, 2009- Situate. How to set-up shop in a 10’x 13’ block. Re-arrange the bed and cot. Make a shopping list with things like bath mat and dish-soap. Meet with the famous Dr. Shroff. Who has a wonderful warmth to her. She told me I will be getting my first test injection today and also a battery of tests. Blood work, MRI, SPECT scan, ultra sound and chest x-ray. While the blood work will be done here the investigative tests will be done in another location. Dr. Shroff told us that we should become accustomed to the way things are done in India. I asked for examples and she point blank said if I say test will be run at 9:30 expect noon and their is no such thing as patient privacy. I need to learn to go with the flow and have a positive outlook as those patients are the best to improve. I am visited by the accountant and hand over $40,000 which cell for cell is a good buy. After a quiet morning big nausea has returned.
I get evaluated in the physio room and am shocked to see how off balance I am. I meet Dr. Ashish and he explains to me how I must embrace the changes that are to come in my body. If I get fearful of the symptoms that might arise then they will have to slow down the amount of cells I am given. It is then time for the blood draw and off to the MRI in which I believe I am the first person to sleep through the entire bang and clang. I am that tired. It only cost $165 dollars for a full spinal MRI. By the time we return it is 7:30 and I get my first stem cell injection and tolerate it well without any reaction. We brave the streets to get eggs and fruit for breakfast and I marvel at the street dogs which are quite fit navigating 4 lanes criss-crossing without breaking a stride. Adaptability is the word for the day.
March 31, 2009-A Good Look Under The Hood-
Today was the physical testing equivalent to SATs. The full work over. Here in India tests are run by businesses we might consider mom and pop operations back in the States. Front desk, many small rooms with scanning equipment. Today’s look under the hood was an EKG, ECG, X-ray, and full abdominal ultrasound. All for 150 dollars. Tests like the ultrasound or ECG are run by doctors who whisk in to run the test so there is usually a great deal of waiting. All looked good, a few leaky valves I was assured were trivial. That is the good part too as there is no waiting involved for the test results as the doctors are talking their way through the scan. Which I have no idea how bad news would go over but their was no bad news at this testing facility.
Stem cells make you sleepy. Like slipped a mickey sleepy. I am good for about an hour after the shot and then I have to lay down. My physio therapist Rajani notices how wiped out I get and wants me to rest. “But I don’t rest”, I say. I do. I am a doer. Not a be-er. I be by doing. This is going to have to change. So I am promising to care for these baby cells in the most nurturing way. Give them what they need by listening to my body. Not fighting through it.
Final scan of the day was a SPECT scan, which measures blood flow through the brain. We were dropped off in the middle of what seemed to be Delhi Times Square and our driver pointed in a general direction and said it is over there. Lesson learned? Don’t get out of the taxi unless you see the building. We were early luckily because it took the whole of the 40 minutes to walk around asking people directions and dodging cows and scooters to find the center. Jenna didn’t like the look of the place and was hesitant to leave me there but I cut her loose as it was going to be a 2 hour procedure. I was told 1/2 hour wait then injection, 1 hour wait for dye to reach my brain then 1/2 hour scan.
Reality was a different story. I waited for an hour before I went up to the desk and asked when I could be expecting the injection. A tech appeared and took me in a back room where there was one light bulb, a table and a plastic chair. They searched my arms for a usable vein settling on ol’ reliable, the only visible vein on my body, my left hand. I cautioned him not to blow the vein, which he didn’t understand anyway. He then came back from another room with what at first glance resembled a grey dog bone with the marrow hollowed out. The injection rested inside. I asked why this was transported in what I now recognized as lead and the head task master stated it was to protect the radiation. I asked if I was going to be given radiation in my vein and he shook his head no -no -no. It protects the dye in the syringe from radiation. Oh that’s good, I thought. Then it dawned on me that if it needed to be protected then it must be in the room. I calmed myself with images of the Silkwood shower I would take upon returning to the clinic. Then to the waiting room.
A twelve by twelve windowless box with 15 chairs occupied by 3 men. There was one free in the corner and I took it. The men were lying down on the rest. One man I would say was on his death bed by the way his son huddled over him and he moaned and thrashed around. The man next to me had double PICC lines coming out of each leg and was reading a book called The Secret To Karma. I was reading over his shoulder until the lights went out which they did every time the SPECT scan was fired up. No windows, pitch black room, 3 men, one moaning in agony. I put on my headphones and listened to positive affirmations. I awoke with my cheek segmented on the edge of a side table. I was the only one in the room and it was eerily quiet. My watch said I had passed out for 75 minutes. I got up and walked out into the hall. Many wooden doors, many possibilities but no one but the dying man on a stretcher. Time for operation squeaky wheel. I found a door marked doctor and knocked. I could hear a key board being pecked and knew someone was there so I pushed the door open saying, “Hello.” The doctor looked up from his work with an angry expression. I said,” I received my injection over an hour ago and should probably have my scan soon.” He snapped at me, “ an hour is the minimum. Go wait.” I snapped back,” I have been waiting- for over 2 hours.” My tech walked from another wooden door and looked horrified when he saw me in the doctor’s doorway. He ran towards me saying “2 minutes, 2 minutes. Sit. Sit.” He put me on a stool at the feet of the dying man, who was quiet now but was rocking his bent knees back and forth. They had me remove all metal and ushered me into a large room with the car sized SPECT machine. I laid down on a way too narrow board and they stuffed cotton between my face and the sides of the head cradle. I then had my chin and forehead Velcroed to the table so I was unable to move. “Don’t move for 20 minutes,” they said. “Close your eyes.”
When I was finished I went to look for my sister in the main waiting room. First glance I just saw a very well dressed Indian woman asleep on some chairs. Second glance I realized it was Jenna and she had taken the time to do an extreme make-over, Indian style. An ornate tunic top of cream, olive and gold with pumpkin orange pants and a sheer silk shawl. The only woman employee at the SPECT place and I had a good laugh over my surprise. She was kind enough to offer us a ride back to the clinic in their ambulance. We went outside to a tiny white van with red crosses painted on the windows. The ambulance was M*A*S*H meets Fisher Price. I sat on the stretcher hunched over as to not bang my head and Jenna had the tiny bench next to me. Jenn was having anklets made of bells, stones and shells that were very Sultan bling and the driver was kind enough to stop for us on a busy street while she ran down to her shop. With the door open and the night in full swing I had a wonderful view of the excitement of Delhi. I watched as cows, scooters with families of 5, taxis, dogs and pedestrians all navigated the same narrow stretch of street in any direction they saw fit. Organized flowing chaos that worked. There is a trust that is extended to the world at large here. All are capable of managing themselves in a fluid manor. My societally conditioned uptightness of dogs on leashes around cars, cows in pastures with farmers, children in safety seats with side-impact airbags not slug across the family moped doing 40 in a traffic pattern that resembles dodge ball.
Todays lesson. Trust in the flow of the universe.
April 1, 2009 - Out Through The Portal.
When I was young I thought one’s birthday represented a doorway or portal from one world to the next. We entered this world on this date and I wondered which birthday I would be having when the portal opened and I was pulled back through. A giant sucking sound heard over Happy Birthday and BLAM! door shuts, candles out.
Today marks my 15th. year with this disease. I woke from a sound sleep April’s Fool’s day 1994 to the worst joke ever played. It was as if there was an earthquake in my spine and brain, unrelenting panic and shakes, chills and vomiting. I smelled and tasted death. I had just come from Guatemala where in the clinic death was a weekly occurrence. Its odor floated up to the open loft where I slept and settled in the sticky heat. Sweet, fresh blood and then decay. I now had it in my nose. I couldn’t sleep or eat for two months. I was loosing my mind.
Does Lyme have a portal? I am here in India to find out. Yesterday was an extraordinary day for me. The ones you savor and hold on to when things aren’t going as well. I am having a hard time sleeping due to the newness of it all, the flip-flop of day to night and the fact that my symptoms tend to ramp up as night comes. That said, I was out most of the day and Dr. Shroff said she had seen me coming and going so many times I did not seem like a patient. What she is picking up on is I am not a patient person. Given a window of opportunity I am up and out.
I found Deer Park and yeah the deer are nice, but I loved the wild dogs. In India they are on a whole well fed. People come to the park and feed them and other animals like rabbits, deer, peacocks and birds. They are such a rambunctious bunch. Here’s my video of them coming to greet me and sniffing out the food in my bag I had brought for them.
I love dogs. and kids. It is how I ease my way into a country or into a room of people. This was the wonderful combination in the next park I wandered my way to, Jain Park. It sits along side the back wall of a school where the children wear pressed navy pinafores and light blue blouses. Their hair is pulled in tight and shiny and they look like potential. I met two young women. Maybe 11 and 12 at the entrance to the park where they were holding a small ball of fluff that was passed out belly up in their hands. It was a Pomeranian. 24 days old. It was white but had a orange tinge on the ends. This was Mendi. An orange dye used for beauty. They spoke English well as they had spent time in the States. We spoke of our mutual love of canines. They told me they were starting a Society for the Care of Dogs. I asked them when and where as I would like to join. They were so excited that I would join their group and we agreed to meet at the entrance to the park at noon. On my way back to the clinic I purchased a coconut with a straw and found it really helped my nausea and gave me a revived sense. Now I am craving them. Baby cells want coconut water and watermelon.
I was having such a good day my physio therapist took me to task at my urging. Squats, sit-ups, balance board, back raises. I marveled at how strong my legs were feeling. No shakes and spasms. So I ate a quick lunch and rushed back to the park entrance. The girls did not come and I can only venture to reason why. They probably went home and said, “Ma, we met this 41 year old American and she is crazy for dogs and she wants to come over and play, please can’t she come over?” To which Ma said, “why are you picking up strangers in the park and inviting them to my house?!”
I continued walking because I wanted to get some cozy sheets and blankets for Jenna and I. The clinic does supply them but I find them scratchy and not warm enough, wanting in the cushy factor. I found some beautiful cotton quilts for $25 dollars for the set in a blue block print and a sheet set for $15. I was happy to be out and doing errands on such a nice day. Still unable to locate dog bones for my pack in the park. Seems grocery stores are for people only. The dogs that have owners are all very fat. They must live on table scraps as I have not been able to find even dog kibble in the markets.
My afternoon physio went well too though Rajani didn’t want to push me so hard. By night I knew she had been right as I my legs, arms and stomach were experiencing spasms and I was exhausted from my day. I fell asleep at 5 p.m. at my computer after only a few minutes. Spasms increased dramatically and I finally caved around 12:30- a.m and took a muscle relaxant and sleep medication.
Today’s lesson was to pace myself and not use up the energy I will need for the baby cells to grow.
April 3, 2009- Letting Go
As one would expect there is a great deal to adjust to in India. Time and the perception of time, cultural norms, food and the way medicine is practiced. This feels like the easy part to me. Fun and new. Where my struggle lies is what is happening to my body. Since starting my antibiotics in January I have watched my central nervous system reacting to the toxin die off and aggravation of the spirochetes with uncontrolled enthusiasm. It has been on a three month bender. If I listen to music my skin goes numb, if I get emotionally excited I shake, heat creates goose bumps, and my muscles have started to spasm, twitch and shake. It is not a grand gesture. It is subtle and often feels like I am holding onto an electric current that is vibrating through my hands, legs and spine. Making it hard to say, hold a pencil or repeat a movement. It is for the viewer subtle, for me an de-lamination of inner composure. My attention is held like a kid to a cartoon, as to what will transpire next. This is my greatest struggle. To let these symptoms flow through me without creating the terror of where will this disease go next, what will become of me? I am told to practice acceptance. What does that mean to someone who fights a disease? Mi casa es su casa? I want these new cells to come in and like it here, not sense the fear and want to be taken straight home.
There are plenty examples here of where Lyme can go. There are many here I hold as personal heros who battle from deeper pits to regain what this disease has taken. I get so angry at this disease I want to take it in the back alley and throw down. Challenge it to a fight, pin it to the ground and punch it until its eyes are swollen shut and it can no longer find its victims. Perhaps I can suggest a Lyme dummy be made for the physio room and I can exhaust myself towards its demise on a daily basis. A fellow Lyme patient gave me advise today that my healing will take place in a zig-zag pattern. Gradual improvement then back slide then greater improvement until stabilized. The six week mark will be where I should look for my greatest turn around. This is the fetal point where the heart starts to beat and life is full course ahead.
There is no lesson here yet as I do not have a road map for this one. Pray for grace and keep myself open in the land of optimism and karma that I will learn the lessons set before me. But Lyme should watch it’s back and stay out of alleys.
This is my new favorite healing elixir. Makes all well.
April 7, 2009 - Get Your Nap On.
A briefer update on my progress. I know I have some major writing in store for me over the next couple of days. We had quite a trip to the Taj Mahal, that will be a novella in its own right.
I have spent the last two days in deep sleep mode. It is something that Dr. Ashish had basically ordered me to do come Monday morning when I tramped across his path back from another mini-adventure. He said I did not seem like a patient. I don’t know how to explain to him that if I can be vertical I am vertical even if I am feeling horrible.
I hate being in bed. He wants me to rest, sleep and create an atmosphere for the M.G.P (maximum growth potential) of the cells. If you have spent a large portion of the last 15 years fighting the bed Sirens then it is hard to climb in willingly. Consider also the fact that I have been unable to nap since contracting Lyme. I can sleep at night, usually, but during the day I hover in a restless state that is punctuated by buzzing in my pituitary and strong pumping sensation in my sternum. I compare it to a large dog laying on your chest and panting. If this happens I neurologically feel much worse. So naps are to be avoided. It is a double edge sword with Lyme because your body desperately needs to rest but it can’t. So imagine my elation when today I slept in the middle of the day for 2 solid deep REM hours. I actually napped. I had my first I.V stem cell treatment after the usual I.M injection and I came up to the room and slept like a baby. So refreshing. So peaceful. So necessary for M.G.P.
Other improvements noted are less chest pain, throat constriction, bladder pain. I will take it all. I am awaiting the details of spinal procedures and dates but from other Lymies it seems like the I.V ushers in great improvement, even for SPECT scan profusion, which after all the scans and tests is my greatest challenge. Seems that my brain is the weak link in the chain. The good news is the amount of damaged areas has not changed. Six effected areas in 2000 and six now. I will be getting another SPECT before I leave to show the improvement. It will be back into the vault with the cryptonite encased syringe and groaning men.
A good lesson for the day would be follow your doctor's advise.
April 5, 2009
In the year 1631 A.D, Mumtaz Mahal, on her deathbed made her husband Mughal Emperor Shah Jahan promise her that he would construct an monument in her honor. Thus one year later The Taj Mahal was started. 22 years, 20,000 craftsmen and 32 million rupees later we have one of the seven worldly wonders. Though I don’t do heat and crowds I would have to see this at least once while I was here.
We were told it would be a 3 hour trip from New Delhi to Agra. It was just short of 5 with out traffic to speak of. I am still working out Indian timing, or IST Indian Standard Time as Gavin refers to it. I packed water, energy bars, my iPod and pillows. At 6 a.m we were called for our chariot. Remember the Yugo? This is about the size of this car for 4 people, as our driver brought his brother. I am pretty sure it was so one of them could answer the cell phone every one of the 400 times it rang. Jenna had told him on no uncertain terms was he to talk and drive. She told him by saying, “No die” and pointing at his phone. His driving prowess really did nose dive when he got on the phone so I had to agree with her.
I had the feeling we should have taken off a little earlier but we seemed to be making good time as we exited the city and went into the more rural areas. The sense of poverty was like a zip line to destitution. The further out from the city we traveled the more the ribcages of animals and children started to show. Dwellings became shredded pieces of plastic held as cover to house entire families. The women started to carry everything on their heads. Pitchers of water stacked two high and baskets of cow dung that would be slapped onto walls, drying with their hand prints imbedded like first grade plasters. They would use these to cook with or to build small houses. Fingers drawing herringbone patterns in the dung. Building material of the fourth little pig. Open flat spaces gave way to small urban centers punctuated by brick and fabric factories and belching oil refineries. Surrounding all were fields of wheat which was being cut and bundled by hand. Large tractors hauled the crop in what looked like gigantic hanging soggy diapers the size of dump trucks that lined their way into the city.
The air was swirling with dust and exhaust. But I kept the window cracked up top so the air could blow on my forehead. I am a car-sicker. Back seats are the worst, only made lethal by pump and brake style driving. Our driver, Jasur and his brother Manu were good drivers by Delhi standards. You have to understand what that means. It means threading a needle at 60 m.p.h. I think I trusted them. The younger brother was far more cautious. Jasur had to be told again and again, “No die.” Imagine a 2 lane “highway” with a dotted line down it’s center, a dust bowl pull-off to the side and a cement median on the right. Now put 3 lanes of traffic in those 2 lanes. Water buffalo and camels on the left, motor scooters with entire families and tractors over laden with tons of wheat slightly left and cars riding the double lines passing in the 1/2 lane to the right between other cars and cement barriers. Horns are used all the time. It is actually painted onto lorries “please use horns” and “dippers at night.” What I figured out is you drive keeping yourself off of what ever is in front of you if someone wants to get by they use a horn and just go, then the rule applies to them. There is no pedestrian right of way.
This entire family waved to me right after I took this picture. What I can’t figure out is why the only the men where the helmets? Where is the chivalrous devotion of the Shah Jahan?
I was fascinated by the towns we pulled through. All variations on a theme and all full of first time sights. Open sewers ran along side the roads and people committed to their daily ablutions within an arms length of the road paid no heed to the bumper to bumper traffic to empty their bodily cavities. A dead man laying with his hand pointing skyward. Another in a dusty pull off legs splayed, mouth left ajar as his soul departed. Movement like cells in a body. A pulsing bloodstream that was this road pulling all along with every known function of life in it’s wake. Dying, feeding, wasting, bursting and surviving all making up a cosmic life force known as India. It was over overwhelming to the senses and it needed a sound track. The car’s momentum needed one too. I put on loud and fast world dance music and it brought my timing up to that of our driver and the pulse of India. It all made sense in an instant. I felt the rhythm and my stomach soothed. I could meet the cheeky stares into our window, I was filled with confidence. I suddenly knew how this worked.
This is until the monkeys. One of the things I love about India is all though it is a harsh social environment the people are kind to animals. They care for stray dogs, they feed the birds and donkeys and cows can lay in a city street and not get hit. In contrast, Guatemala held a meanness and violence towards animals that wrecked me. I didn’t think it existed in India and certainly it does not to the extent that I witnessed in Guatemala with the disfiguring of dogs to make them mean. Our driver started to pull off to the side of the road in what seemed to be a random location. There on a cement barrier were about 6 men all with their own monkey chained by its neck to the handler. Some had baby monkeys the size of kittens clutching the backs of their moms within clouds of belching diesel and dust from all the autos. I started to yell at our driver to go, keep going. I was thinking we were being ambushed to give money towards animal abuse. He got out of the car laughing at me and went to pay the tax (toll). We were left to be stared at by the monkey men. One kicked at the monkey nearest me and it leapt on my window like a flying squirrel, flattening itself against the glass, monkey under a microscope. The gaze of the monkey sizes you up a lot quicker then the gaze and persistence of the handler. The monkey saw I had not the stomach for monkey tricks and simply was doing what was asked of him.
We moved on and back into the blood stream thick with carbon. You can see the Taj and emperor’s palace as you are entering Agra. It sits with it’s back to the wide river only using half it’s banks potential. There are charcoal black water buffalo that are driven through the streets fresh from their hump filling at the river’s edge. Think of them as urban rhinos. The streets are mad with activity and these creatures plod along seemingly without direction but conditioned for home.
Here they are making their way.
The activity actually ramps up with as you enter the Taj proper. Due to the exhaust problems that exist within so much of India and its yellowing and etching effect it is having on one of the world’s wonders, modes of transportation are restricted to a few choices. You can take a cart with your choice of motor; camel, horse or peddler. Or you may opt for the electric car. But make this decision before you step out of your car as you will be descended upon and given all options at once including a guide who acts as your official knight in shining armor to whisk you away from the swarm of marketeers and delivery agents. We chose the electric car which would fit all, the guide, the drivers and Jenna and I. This is to only go a kilometer but it makes good sense to get you away from the hub of demands.
I did see the guy. In fact I screamed before he was hit. I felt the thud in my bones. Our front left side of the very quiet electric vehicle slammed into the back of an Indian worker who was walking towards the entrance. He went down and there was a brief moment of silence as the driver realized what happened. The guy was stunned but jumped up and came into the front cab of the car swinging over the lap of another and connecting with the exact place on the body he had been hit. They then started a slapping fight to rival any school yard. It was over rather quickly. Debt seemingly repaid.
It took me back to being hit by the truck in Guatemala. The unsuspecting blow. The pre-cursing scream and the knock down. My hit threw me into an open sewer and I did loose consciousness but I came up swinging at my assailant all the same. I really did feel for the guy and swore that I would be taking a peddle bike for our return trip.
Inside it is beautiful. Just like the pictures. Symmetry and symbolism. Devotion and a spare-no-cost-aesthetic that well, puts it in to the world’s wonders category. For as many people who are present at one time there is an order to the masses as all are drawn towards the shimmering white onion top. You must do a few things before you proceed.
1. Try and take a picture from a distance plucking the top. Not as easy as it may seem
2. If you are Indian ask to have your picture taken with a Westerner. If you are a Westerner you ask one of the elaborately dresses women in bead-dazzled saris to be your photo mate.
3. Get a picture of the tomb (because that is what it is) reflecting in the pool that stretches out between.
My favorite observations are of the shelter that the dome gives you. Shoes must be removed and it was very hot at high noon. Once inside the marble and inner sanctum it is dark and cool. There is a soft padding of feet. People walk around the (stand-in) tombs of the Shah and Mahal counter clockwise. Their actual resting place is below. Pigeons flap over head disturbed from there resting place by the shouts to test the acoustics of the place and flashes from the renegade cell-phone cameras that flash on the sly like groupies at a rock concert. The back side opens to a palatial view of the river and the goings on of river life. Quenched water-buffalo with glistening hides, dogs running in a full court press to some secret den and the congregation of families and friends dressed to the nines and taking refuge in the shade of a gesture of love and remembrance.
All this said I was holding out pretty well. I kept hydrated, energy barred up and stepped into shade whenever possible. Jenna wanted to try the Oberoi for lunch, which is a bizarre display of over the top wealth plunked down amongst destitution of the deepest scale. We were turned back at the gate by a handsome turbaned young man. We then went to another hotel after our driver tried and failed to take us to a restaurant of his choosing. Jenn had some terse words at him, well punctuated with sir and please, but the tone was undeniable. I think he wanted to get back to New Delhi sooner then later. We had hired him for the day yet he looked very disgruntled as they dropped us off. Inside the hotel and restaurant it was cool and quiet. There was a buffet with of all things a salad. Jenn assured me this would be the place to eat fresh veggies so I dug in. I had my new favorite a homemade lime soda. Tonic water and lots of fresh lime juice. Just the thing on a hot day. We finished up and headed outside to grab the drivers and head home. They were no where to be found and not answering their phone. This is the same phone that never went unanswered in our company and which would ring every hour or so while we were in the Taj asking us when would we be coming out, so this made me a little nervous.
After an hour and still no answer I was leaning towards Jenna’s scenario that they had just taken off. I didn’t see how this would make sense. We hadn’t paid them yet. Jenn inquired in the hotel about a ride back to Delhi. They wanted 11,000 Rupees. More then double what our little outing would be costing us.
Jenn looked at me and asked what I would be doing if I were alone. I had been sitting quietly in the shade as I was hitting the bewitching hour and symptoms were starting to kick in. I said I would probably start working my way through the parking lot car by car and then head out the gates of La-la Land and start looking for their car in the general vicinity. I got up and headed to the valet area. Towards the edge near a wall and under the umbrella of a shady tree was our little natural gas bullet. Doors wide open and and feet protruding. I walked up and both the driver and his brother were passed out, seats back and snoring. It made me laugh quite hard whether from relief or they just looked that funny. A worker came up and shook the car they shot up and snapped their seat belts on without ever fully coming to. I asked if they needed a chai before we all it the road?
Then it was back to Delhi full speed with my soundtrack moving me through and keeping my soul up to speed with our hurtling bodies.
Exhausted, I skyped up Mike when we returned to the clinic to let him know we were back safely and he related he had spent the day tiling our upstairs bathroom. My own loving declaration and tiled resting place for when I return. The Taj bathroom collection by Home-Depot.
April 6th. 2009-The Angry Mother
I have needed a massage for quite some time. Every time my feet are rubbed or someone pats their hand nonchalantly over my back I feel near tears with relief. We have had a hard time finding a masseuse near Round Pond and I have just resigned myself that I would wait for India. I found a one hour massage advertised at the Sivananda Yoga Center for 600 Rupees. That would be about $11 US. At that price I thought I would go 3 times a week and get out all the knots and kinks. I had never had an Ayurvedic massage, I just focused on the word massage in the title. One could say research would have been key here, but I would not have received any benefit if I had not gone which might have been the case if I had known what was in-store.
I got a late start as the learning curve in your first week in India is steep. It seems that banks do not change money unless you have an account. I had to go through the front desk at the clinic which means waiting for a money changer to arrive. I had also received various time frames on how long it would take me to get to Sivananda. I tried to reschedule growing nervous about the time but the composed young woman who runs the front desk at the clinic said, “It is India, you are not expected to be on time. This had been said before, and I decided to relax my punctual self and start to believe it. It took half an hour for my tuk-tuk to weave it’s way through to the quiet back street of Sivananda. It is a welcome relief to walk through the gates and feel yourself settle from the frenzied pace of Delhi life. Sivananda is a yoga center that my Aunt Robin and I had simualanteously googled one night in March for a meditation retreat. The center teaches focus on the breath and mind, a part of my haphazard yoga practice that is wanting.
I removed my shoes swearing to get myself a pair of flip flops, as sneaker and sock removal in India is becoming a time consuming activity. Fifteen minutes late seemed well with in the Indian parameters but I was informed by the lovely British woman who runs the front desk that my session would be cut into if the masseuse would still agree to do it. She shooed me outside to the patio and a small metal door that fitted between the main building and the exterior wall. The door was opened by an Indian woman from the south, near Kerla. She had an air of a toll attendant that had been working a double shift. “Here comes another.” I could hear her say as she sized me up. She was probably judging how many quarts of oil I would be needing. Because, as I came to know Ayurvedic massage is all about the oil. Dark and sweet like maple syrup. Your skin exudes a dark woody pancake smell. The woman gestured me inside a room tiled half way up from the floor with orange sherbet for a solid wall color on top. A large mahogany wooden table with raised edges like a tray, a small hollowed out divit for your head and a battered looking pot suspended above it. There was a bathroom door towards the back of the room which I headed towards then realized the floor was wet and I wouldn’t be able to disrobe there. I turned around with a slightly panicked expression as I did not know protocol. She had enough English to bring her point across, “off everything.” she sat not taking her eyes off of me for an instant. The was oil heating over a gas burner. I started speaking out loud as one does when one is unsure of their movements, giving her a play by play of what I was doing. “OK, I said, “I will just leave my things here and take off my clothes. O.K then I will just take everything off. and put my clothes in my bag..........oh. what is this you are handing me. a strip of muslin”.... though I think I said Muslim. “ How am I to put this on?” Like a giant turn of the century maxi-pad that went between my legs tucking in the string that went around my belly was the physical direction she gave me. This is when the first slaps came. She smacked my stomach and said, big belly’. I froze...... this was so out of my comfort zone. Tsk, tsk she seemed to cluck. Then smacked the wooden table and told me to sit...... “ sweaty.” came the next compliment with a wrinkled nose as she sluiced perspiration from my back. I have been sweaty. Perhaps to angry momma it was too cool to sweat but to my stem cell pumped body I just been drenching cold and clammy for days.
So on to the table, legs swinging. Gestures were pushes, if I moved in the wrong direction I got a slap. My head was pushed forward and a cup of hot oil was poured into my hair. Then the vigorous rubbing began. Back and forth tossing my head. I felt like a child caught making mud pies before church and hauled inside to be scrubbed raw by the Angry Mother. She pushed my head towards the table and I laid down on my back on the dark hardwood while the warmed oil was poured on my stomach. My sweaty back acted like a suction cup to the wood and I stayed still as she kneaded my stomach like a pizza dough. Arms and legs next.
This is not your deep tissue experience. This is surface and invigorating. Fast and stiff. You need the excessive amount of oil to prevent rug burn. Her hands slip- slapped over every inch of my flesh, only the muslin was off limits but for the ass it was moved to the side. I think I had gone to my safe place, like I do when I get dental work done. I tried to release each part of my body that she worked, envisioning the lymph system opening and flowing. She started slapping me saying, “Ha-Ha....sleeping.” I took the turn of her hand to mean I was to turn over. She dumped more oil on and it was here I started to have to brace my self against the wooden edges so I didn’t slide onto the tile floor like a wet fish. It was like being on oiled ice. She rubbed so enthusiastically that I felt like a puck in air hockey. Pinging of of the edges clambering to stay centered. I must say I was relived when she slapped my ass to get up. She wiped my feet so I wouldn’t wipe it on the tile and motioned me into the lobster cooker. It is a steam sauna box that opens and you climb in with your head protruding from the hole in the top. She had me. I watched her clean up. Rags were brought in and my sweat and oil were simply rubbed into the wooden table. The color deepened and she buffed it to a Hazel shine. It was oddly comforting to know that the table was a concoction of so many oiled bodies and days work. I took this time to ask her some questions about herself. Does Angry Mother have children?” Yes 3. “In the city?” No. In Kerla 3 days ride on a train. Her family is there. Her mother watches the children. “How many massages a day?” 5 at most. She sat in a plastic chair and motioned at how tired she was.
She asked” yoga?” I said, “ soon when I am feeling better.”
By now big rivers of sweat were following my nooks and folds towards the bottom of the box. I was feeling quite warm. I decided I could call it. “Done.” I said. She came over looking doubtful at my sweat box performance. When she opened the box and saw me resembling one of my home state crustaceans she gasped. I was feeling shaky so she helped me out of the box and motioned to a pail of water in the bathroom. Soap, shampoo and a transparent towel were handed to me. She untied the muslin which was now a greasy thong and added it to the pile of thong sisters in the garbage can. I washed and washed throwing water every which way. As squeaky as I could get I stepped out into the room where she watched me dress with a very bored expression propped up on her chin. She lent me a comb and did not reply as I said good-day, leaving her den and stepping out into the sunny courtyard. I felt better. Clearer. Less congested with in my lymph system. This was good. Though I do not think I will be going back for another. Try everything once.....twice if you like it. Now to see about meditation and harnessing the monkey brain.
Changing of the Guard: April 15, 2009
It is a rule, with only few pardons that each patient bring a care-giver. The sisters (nurses) are only for checking vitals and administering stem cells and medications. In India the family provides the care needed for the patient. Some patients who are here with spinal injuries or the more severe Lyme patients need varying degrees of care. I am, on my good days very mobile and can fend for myself. Though with Lyme you never know what will cause a Herxheimer or an exacerbation of symptoms and again you are plunked right down, back in the middle of the bed. Here it is great to have a friend or family member assisting you. Plus the company is nice. This weekend I was in bed with a debilitating headache, fever and weakness. Jenna ran to the chemist for some medicine that the attending doctor prescribed. It was hot and loud and she braved the city streets while I laid in bed with shades drawn. A real blessing.
Jenna, my sister has been a trip all in herself. She is the most driven person I know. She likes the comforts and pleasures of life and I have reaped the rewards of her good taste. She gave up 2 weeks of salary, a budding relationship and her Diego to come and care for me. I am supremely grateful for her care and generosity. She leaves knowing all the best places to shop and has left me detailed instructions and business cards on how to find these goodies myself when I am feeling up to it. She is fearless and I have been blessed to have her ease my way into this country and the clinic routine. She leaves looking re-charged with glowing skin, hair and stronger nails. Her yoga has reached a wonderful level and she now has a personal relationship with Dr. Shroff so she may opt for treatment one day herself. We have had 2 big rows and the sisterly quips but I think we have done well living in a 10‘x13’ room together for 18 days. Something not done since we were 6 and 8 years of age. I applaud her for her effort, stamina and the love she has shown me. Her generosity will always remain my great teacher.
The guard switches gears to my Aunt Robin tonight. My Aunt and Jenna will cross paths at the airport tonight and have time for a hug and a few words.....but not much more. My sister jokes that I will have a new inmate to break in. I haven’t had Robin in my life until recently when she visited Maine last summer and we found out how much we have in common. Yoga, politics, music, writing....yoga. She is a magazine editor and an Ashtanga yoga instructor in Walla Walla, Washington. Hauling her mat half way around the world to care for me. Her strengths are her passions. Grounding and exploration. She is also fearless of this disease. If I am having a bad time of it she really wants to know what is going on. She asks questions, reads articles on Lyme and has tried to prepare herself for my care in that way. With Robin I hope to explore meditation and breath work or prana while I am here and work on a story that has been patient for its telling. Robin will be here until May 4th. and Michael arrives May 2nd. a nice little cross-over for them to visit.
I am so grateful for all my care-givers and all the contributions that have made this possible. I am very blessed. Thank you for your kindnesses.
Hindi Cheat Sheet- Lessons by Rita.
Good morning......... Namaste
Too Much................ Bo-HOO-ja-da
Come In................... Ah-Ja-eer
April 15- Clinic Life
My brother JC has said it looks like I am on vacation. Why don’t I post about the clinic and the goings on? I don’t have a real good reason or maybe one I am ready to fess up to. I can say I love the staff, bar none.....except I don’t get the warm and fuzzy from the accountant. He has a bit of the villan tying the damsel to the train tracks vibe going on. You know the one......”You must pay the rent!”
My room is comfortable made more so by the many collective purchases Jenna, Robin and I have made. From comforters and gauzy drapes to clothes pins and a cook pot so I can make a homemade soup or two when I need a change of pace from the vegetarian Indian food. The AC works great. If the power does go off it comes back on pretty quickly. You have your own bathroom. Hot water is abundant and the staff comes by daily to sweep your room and keep things very clean. This is not an easy task with all the dust that swirls the Delhi streets. You have a tea pot, a fridge and a T.V which I promptly unplugged and covered with a pretty scarf. I lugged so many books, art supplies and divertissement with me I have no business staring into the blue box.
View of Nu-Tech from the street.
Here is my home away from home.
I am on the 3rd. floor which is Lime Green. Each floor has 6 patient rooms and a nurses station. Except for the 3rd floor (only 4) which houses the operating theater, though the only movies playing are the ones not rated for this Lyme patient. Attack of the Stem Cells and Spinal Tap are on the marquee. Maybe I can attend if accompanied by Dr. Ashish the anesthesiologist. I will buy the popcorn.
You get 4 choices here for your meals. Indian from Dr. Shroff’s Indian hospital Guatam Nagar or a more Western designed palette for Nutech Hospital where all the foreigners reside. With-in these two choices you are offered vegetarian or non-vegetarian. I always choose Guatam Nagar Veg. Last week this was the wise choice as there was a bit of an issue for those who dined on the chicken and fish. My meals consist of a large portion of rice (which I never eat) a dal, or bean dish and a cooked vegetable. You are provided some steaming chapati to dip into your dal which is the Indian version of a tortilla except made of wheat not corn. There is a small raw salad wadded into an aluminum ball which is usually hot, a piece of fruit and a drink. This is brought for you and your care-giver.
Here is an example of a typical fare.
The sisters (nurses not of a religious order) are a glowingly happy group. They are from the North of India, near the border of China and have more of a Mongolian then Indian look to them. Beautiful smiles, lovely skin and extremely warm and competent. They wear smart little suits of dusty rose, white caps like fancy folded napkins and little white smocks with front pockets for carrying the pulse monitor and the little pastel green box that transports daily injections to your room. They come in three times a day to check my blood pressure, heart and oxygen rate. How they determine your oxygen from a finger cuff is beyond me? It is not like I blow through my ring finger. They give me daily, my 2 coveted injections and may be/ maybe not my more coveted I.V of stem cells. The injections are tiny insulin syringes with what looks like .10 mls of the cells. You can take them in your arm or leg. Children get them in the bum. They can burn and the sisters defrost them by rolling the syringe in their hands like dice before a make or break roll. I chant inwardly......”Come on sister...Mama needs a new pair of stem cells.”
Stem Cell Infusion
Do I sound like an addict? I am feeling waves of a certain amount of need. It is not the nice side of me. Not where I should be in a glowing, cosmic the-universe-will-provide state of being. Perhaps, this is why I stay clear of blogging treatment topics. I want more. I have this sense of panic that my cup will not run-ith over with the amount needed to help repair the damage and alleviate my symptoms. My observations “stem” from the fact I have been here 3 weeks and have not had a spinal treatment. This is where they inject the stem cells into your spine. Since my SPECT scan has shown that the greatest amount of damage is in my brain and my symptoms are overwhelmingly based in my Central Nervous System then one would assume that the spinal procedures will get the stem cells into my brain and CNS and have a greater effect. I have watched others who arrived after me be given their second spinal procedures and I am frustrated. This week I have received less IV’s then I did last week. When I arrived I was told by one of the head doctors that the amount of stem cells I can tolerate will dictate the course of my treatment. If the treatment is too much then they will back off on the amount given. I had a rather good week two and was surprised to have treatments pared down during week three. I am told each patient is different. I am told I do not look sick. It is what most Lyme patients are used to hearing, though never from our Lyme doctors. So I have to ask is my treatment being dictated by perception?
This is my process. These are my fears. This week has been rough in spots. I am dedicating myself fully to what I have control over. I get to physio, I do my walk and feed my pups, I have made it to yoga class on three occasions and I sleep all afternoon. I talk myself out of the fear place on a daily basis. I am advised to let go and except that this is the way things are done in India. I know I have lessons here. Is it counter intuitive to work hard at letting go? Lyme is a clinical diagnosis. My symptoms cycle and are so internal they ride under the radar of what looks sick. I suppose what is lacking is a history with the doctors here. I need to trust and that comes with experience.
My symptoms and their severity vacillate wildly. I can have a good day like yesterday where I am only experiencing mild cramping muscles, bladder pain and air hunger. Or I can have a day, like today where I am in bed for the duration and holding onto a wild ride of pain, nausea, tremors in my brain and spine and skin sensations that have me held in awe of their scope and depth. I do seem to be generating an immune response after the cells are fed in. Saturday, I kicked up a good fever and flu-like chills and aches an hour after my I.V. push. The gift that comes with the cells is that you are so tired. I sleep/ doze from mid-morning to lunch about 3 hours. I wake usually famished and head to my second physio and usually come back up to my room and rest some more. If I go out it is in the early morning to feed the pups and do yoga. Evenings the streets are still radiating oven like heat from the days baking and you must wait some time until the evening where it has cooled off enough to go out to the park.
There is good news. I am stronger. My legs, arms and hands do not feel like quaking jello, as much. My muscle spasms are less at night, and thanks to a wonderful little yellow pill the clinic provided I got some well needed rest. Rajni says my balance is improving well. I also found a Happy Mother masseuse. She dances and sings while she gives you a deep set rub down. Ten dollars US for ninety minutes. She was appalled at what my Aunt Robin spent on her gifts and is going to take her shopping at a real Indian market and teach her how to haggle like a pro. Her name is Minu and she is a lovely woman.
I was able to attend a free yoga class at Sivananda yesterday, Sunday with my Mosi (Aunt) Robin. We share a the same love for the practice and she is a teacher back in Walla Walla. I enjoyed the class and found I could do most of the poses. Sivananda is quite a distance. We had an adventure getting back to the clinic with one of the crazier Tuk-tuk drivers we have had. This video gives a hint at what the 45 minute ride was like. He must have stopped, or not stopped to ask directions 20 times, proving that men really are capable of admitting they are lost.
April 23, 2009- Elixir of Life
When I was in fifth grade I wrote a poem about my favorite thing to eat. It was titled Ode to the Brussel Sprout. If my teacher Mrs. Moody were to suddenly appear in Delhi and hand out the same assignment I would have to say it is the coconut. I would like to take this time to expand on its majestic qualities. Coconut water or na-Dee-e pa-ni in Hindi is antimicrobial and is an enchanting elixir that re-charges my system. I can feel nausea, sweats, weak and ready to crawl back into bed, suck down a shell full of the slightly sweet and clear water and presto, change-o I am attending a yoga class and as transformed as I can be. It has received a bad rap due to fat content and high cholesterol forming but it is exactly the opposite. You can cook with it as it takes high heat, if you can grow in this climate that is a given. It does not absorb into your body as fat and it is actually quite beneficial for your heart. When I was in Guatemala my dog Suitsu became gravely ill with parasites. She hadn’t eaten in 2 weeks and had blood coming out both ends. I had seen enough children die of this condition to know the outcome was not going to be favorable. I hitched a ride in a hollowed out log across the Bay of Honduras in rough seas with her cradled and found the only vet within 300 miles. He told me to take her home. She was not going to make it.
When we got back to the clinic I locked myself in the little bodega for a good cry. In the throws of it an old man who only spoke Quechi motioned to me through the window. His hand came through and placed and old baby food jar in my hand. There was a thick, clear liquid that left a slick on the side of the glass. Coconut oil. He motioned for me to get it inside her, which I did with a syringe. She was having a small meal the next day and as all those who knew her she lived a long and blessed life.
I get my coconut water every morning after I make my rounds of dog families in the park. I focus on a mom and her two pups. I have named them......ahhhh..... Momma, Chula and Scrampy. The names have stuck so don't say they are lame.
There is also a large dog that works the entrance to the park. His name is Sheru, it means lion in Hindi. He is young and playful but very fierce to certain individuals. The little gang of misfits that chase me around the park and copy every thing I say will not bother me when he is near. If I am out side the gate, he is lying at my feet. I go to this entrance because I have my fruit men and coconut boy there......"say what?"
The young man is named Mustok and he is 13 years old. His “brothers” who run the stands are a lively, smiling bunch and enjoy doing point and tell. They hold up a mango and I say “ahhhh-mmmmmm” and they laugh. Mustok is a serious kid and you must take him in this way as he is wielding a machete. He does this 10 hours a day and yes, he has all his digits.
Here he is in action.
April 24, 2009- Breathe
Today I was able to see two of my favorite kids at the entrance to the park. The eldest is Angel and her sister balances on her hip all day. I have never seen Sivani’s feet touch the earth. They meet me at the main gate where Sheru and Mustok reside and we eat mangoes and bananas together. Today I surprised them with 2 little dresses. The one for the baby fit (6 months) though Angel’s will end up being a smock. She seemed smaller to me. They are so quiet and we became friendly in passing as she would always say good morning.
I wait for my Aunt Robin every morning at the gate. I leave the clinic at 6:45 a.m and make my dog feeding rounds to the different packs. I meet up with Siru around the main gate and he tries to wrestle me to the ground. He gets his allotment and I have my coconut and learn Hindi words. The fruit guys are my teachers. I have fruit nailed down and I can count to ten. So today I focused on 11- 20. Ready class here we go.
1 ache 2-do 3-teen 4-char 5-paunch 6-che 7-sat 8-art 9-no 10-thus 11-ga-ra 12-pa-ra
13-tear-ra 14-chow-u-day 15-pan-dra 16-so-la 17-sut-ra 18-a-tara 19-un-neath 20-bees
My instructors, all 15 of them encircled me and shouted in unison the numbers as I wrote them out. They ranged in age from two freshly scrubbed school girls with long black braids to the older gentlemen who are the guards of the gates of Deer Park. Aunt Robin’s rick-shaw arrives around 7:30 to gather me for yoga. Today they rode right on by as they were not able to see me in the hub of professors. I ran to the rick-shaw and Sheru tried to climb in with me. He is a great likeness of my dog from Guatemala, Suitsu and is so friendly he runs at dogs being walked by their owners and wrestles with them in a playful way. He tries to do this with me, rolling over on my legs and holding my ankles in his mouth.
I don’t mind really. He is such a great protector when he is not trying to take me down.
Sheru the magnificent.........
Yoga was good, physio too. I am getting muscles. If I leave here with anything it will be an understanding of how to work hard. I had my I.M injection, wrote in the physio diary how well I was doing (a.p.b to the humbling gods) and headed to my room.
11:00 a.m. is my witching hour. I have crashed and burned so many times at this time I feel superstitious. This week, with the exception of Monday which was spent in bed has been good. If symptoms cropped up they were manageable and would usually pass quickly. Not so today. The burning pain in my spine started and I quickly felt like I was holding onto an electrical current radiating out to my legs and arms. The pain and heat became so intense I started to panic. My skin started to feel stiff like it had shrunk then the crawling started. I laid in bed and tried to ride it out. Aunt Robin wanted to get me a shot of something to calm things down. I said I didn’t want one of those shut-up shots again as it had made my muscles burn horribly. I also didn’t want to take the medication for the neuropathy as it knocks me out and I wanted to sleep tonight.
Dilemma...When things get hairy here Robin’s Super Hero Power as Yoga Woman come into play. She teaches me to breathe. Simple you say....In fact I am surprised at how much I hear the word breathe on any given day. I hold my breath all the time, and I don’t even know I am doing it. So Robin taught me the Complete Yogic Breath. It is breathing using the three sections of your torso. Deep breath into your abdomen, filling it until your breath flows into the chest watching the ribs move out to the sides and then breathing into the clavicle area. This is done to the count of 4 on the inhale, 4 holding, 8 on the exhale then 4 holding and you repeat the sequence. With Robin guiding me I worked on this breath work for about 10 minutes. The burning cooled down as if my spine had been bathed in cool water. She then instructed me on a form of breath work used in Ashtanga that sounds like the ocean by closing down the back of your throat and the heat returned. I asked her if one was for cooling and one was for heat? She said exactly, that the ocean breath was used to generate heat within the body. So we went back to Complete Yogic Breath. We then did a Yoga Nidra or (Sleep Yoga) session.
Things no longer felt out of control. Cooler, quieter and I laid back in bed knowing I had added another tool to my good health tool belt.
Later after Robin had left to do some shopping I went up to the roof for a change of pace and was invited by 2 of the ward boys to tea. They handed me a china tea cup and brought me a chair. Deepok and Odess are two of the happiest household attendants here. They smile all the time which is a gift to the rest of the world.
Robin and I have been cooking and preparing our own food when clinic fare is waring thin. Here we are making a Red Lentil and Orange Coriander Soup in the kitchen that looks a lot like our floor. Yesterday, I made a mango salsa and took it down to the physio room for Rajni my therapist. Today she reported it was FANTASTIC! Which made me very happy.
Boys will be boys where ever you are. A really fun and friendly group. What I wouldn't have done to have Deer Park as my fort when I was their age. There are lovely dusty terra cotta fortresses inhabited only by parrots and pigeons. It is all in a delightful weathered state.
April 25, 2009 Party Crasher
I woke quite early this morning. 4:30 a.m had me, tea in hand skyping Gavin (fellow Lyme patient) from the roof top. It was dark, so dark I had to lean in to be illuminated by the Mac glow for him to see me. I was woken up by a large crash of metal hitting pavement and shattering glass. Seems 4 a.m is the perfect time to drop a street light. Drop as in tim-ber!
I packed up my dog food bombs and yoga mat and headed to the park by 5:30 a.m. I had been invited by a elderly gentleman, Sardin to join his yoga class on the lawn. It starts at 5:45 a.m every morning....... except this morning evidently. I fed my three charges and went to sit on a park bench until I saw Sardin and his group arrive. I was having some heavy effects of the stem cells, cold sweats, nausea and a headache on top of some Lyme stuff. Feeling rather rough I sat down to regain some strength for what ever was to come. I was approached by another elderly gentleman and he said I should do yoga. I replied I was waiting for Sardin. He said no-no you need to do the class on the next lawn.
He led me to a fenced in area, trees, flat grassy lawn and 15 people doing with eyes closed chanting,
" ahuuuuuuuuuuummm.” I hesitated and he insisted, “Go, go.” I treaded lightly to the back of the group and silently unrolled my mat. I sat in cross legged position and picked up on the last Om. The two teachers opened their eyes and I saw the surprised look. It seemed to say, look what Om dragged in. They pressed hands in Namaste and greeted me which made the entire class turn around.
*side note.... I do not like being late. I do not like sliding in to something that has already started. I do not like stopping the flow of a class, church, movie........ fill it in. It comes from years of being late to The Peck School (it was a half hour drive) and being tormented by my teachers for such event that I did not have control over. If it was during the Wednesday morning assembly then you could be sure Rudy Deetjen, Peck’s headmonster would not let my arrival slip soundlessly into a seat. There would be some sarcastic comment from the podium on my behalf. O.K I admit it I am scarred.
So I raised my hands and greeted my fellow students while imagining twisting their heads back towards their fronts not their asses like Barbie dolls. O.k down to business. Yoga... calm, peaceful, centering.... yoga. I laid on my back and gazed through the branches over head watching parrots and listening to call to prayer from a group in the next glenn.
We did some warm up poses, all very gentle. Then stood up and clasped our hands over our heads and leaned to the right. It is in side stretch I first caught the quick movement. You notice quick movements in the park because of the heat. Nobody moves quickly unless there is an issue. My trusty side kick and defender of the park Sheru was running full steam down the center walk towards the gates of our yoga sanctuary. Evidently my scent had reached the front gates. I again tried mind control...... keep going, keep going. No such luck. He rounded the metal gate like a barrel at a rodeo. He was building speed, each bound covering 8 feet easy when he hit me. He launched himself at me in a joyful bear hug, dancing on his hind legs gleefully. I have been in enough of these Sheru holds to know your only way out of it is to play dead, in other words ignore him. My balance has improved. That has been proven by my ability to stay in the pose while Sheru tried to take me down. He changed strategies and moved to the snaking himself through my legs and kicking with all the strength his back legs could muster. Again, I stayed strong and in the pose. I was chanting the mantra, not my dog......not my dog. When I noticed Sheru’s two sidekicks in a full run across the lawn towards the class. This is not going to work towards my defense that I am not the crazy dog lady of Deer Park. What they were excited about is food. Kibble. Crunchy, yummy chicken and milk flavored puppy chow that I sprinkle out for them. Not a day old chapati, not cookies or veggie curried rice. Carnivorous to the hilt, puppy food.
These dogs are not small. They are for the most part between 50-60 lbs. and strong. They are however, not as sure of me as Siru. They stay their distance. They danced excitedly around waiting for the daily ration. Warp speed thinking, playing out the scenarios and thinking what would the Dog Whisperer being doing right now? Who was I kidding? He would be so busy with all the stray dogs he wouldn’t have time for yoga. So I decided to stay strong. Hold the pose. Ignore the now full court dog wrestling match that was taking place behind me. They were so loud. Mock growling, snarling, yipping letting it be known who was top dog.
It wasn’t going so well for the rest of the class. About half had stopped and turned around to watch the match. The other strained to hear the teacher over the growing ruckus. That is when the wrestle turned into tag. Across mats, around legs, over bags and still I held the pose and the mantra....not my dogs. I was simply an innocent bystander....
What was shrinking was the inner school kid who was mortified that I was disrupting the class and the center of attention. You know the kind when something is going wrong and no one wants to claim the place of doing something. Then someone finally does and everyone is relieved that someone has addressed the elephant in the room, even if it isn’t the way you would have dealt with it. It was a man who picked up a stick and ran at then to drive them off. I am telling you it wasn’t what saved the day though. It was a dog fight at the front gate which sent Sheru the defender off to save the day, his lackeys behind him.
He let me be until the final cross legged pose. He came back to lay beside me and chew on my fingers which tried to remain with my thumb (God) over the pointer finger (Ego) during the chant of Om. He licked at God and gnawed at Ego and I let him as it pacified us both.
May 2, 2009- Update on treatment
Michael has arrived. Breaking odds and time records in airports to get to me. Doors were opened, literally and he is here safe and sound. My favorite person in the world.
He woke around 3 a.m and watched me sleep until the sun came up. One of the simplest pleasures in life is knowing someone watches you sleep. Someone lays still and watches over you, content in your presence and your peaceful state. After the blessings of good health it is what I would wish for others.
I had received my biggest dose of stem cells to date the morning of the day he was to arrive. Five mls. in the vein. A dose suitable for a horse it seemed as I was only getting 1-2 mls. a couple of times a week. Good let’s ramp it up, I thought as I have entered the second half of my treatment and feel I am tolerating the doses well. I have been asking for more. This is due to a few factors.
First, I was told by one of the doctors upon my arrival that I would be given as many stem cells as I could stand. Stand would be referring to Herxheimer reactions which is an exacerbation of existing symptoms caused by a die off of the bacteria or an immune response. I was instructed to be brave and how I tolerated the treatment would directly influence the intensity and course of my treatment. Second, if I could live in a bubble without the ability of comparison then I would not know about procedures. Procedures are the notches on the belt of stem cell therapy. The stem cells are injected into the spinal layers. Those with spinal injuries and motor neuron disease get these on a regular basis. If I were not parked across the hall from the procedure recovery room to watch the comings and goings then I would not have a head count. When I speak with other patients or care-givers and I am asked how many procedures I have had. I reply, “none” which shocks them. How long have you been here is the next question? At this point it is usually longer then those I am speaking so people get a perplexed look on their face and I get nervous. Are the injections, IV and infusions reaching my brain? Are they able to cross the blood brain barrier and repair the legions? How are they addressing the core issue of my central nervous system? I get in this state like Holly Hunter’s character in Raising Arizona where a girlfriend starts listing off all the vaccines she will need to get for the new baby (they stole) and she starts panicking saying, “High, honey we got to get the DIP test honey, we gotta get the MMR honey.” I am tuning in to others and their processes.
So caregiver in hand, we stomp down to Doctor Shroff’s office where my fears are aired and questions asked. Information feels forth coming, open and friendly. I am just not sure it pertains to my current question or state.
Dr. Shroff said, “ You are a woman who wants it all, now.”
I was slightly indignant in my response, “I have been sick for 15 years and I want my life back. Now would work just fine.”
Her reply of, “well then, give me 15 months.” Got my attention. You can not argue such common sense.
This process is not what I am used to. I have a firm hand on a road map when I am with my Lyme doctor, Richard Horowitz. I know the plan I am asked for my opinion and my thoughts are considered.
At the clinic I do not know the course of treatment until I am sitting in the chair about to get my ............. fill it in. I don’t know. I see some what of a pattern. The treatment intensity might be strong one week then light the next. Alternating. A strong week would mean an infusion one day followed by a few days of I.V doses varying from 1-2 mls with daily IM of .10 mls in thighs or arms. Lighter week would be maybe 1 IV and IM injections daily. I seem to function better on the lighter treatment weeks but this is due to less of an immune response being stimulated by the stem cells. I am here to herx is my mantra. These lighter weeks feels like not enough work is being done on my part. These are Herxes I can handle not the run away train feeling of antibiotics and the fact I know, there is no here (stem cells) there ( Maine).
So back to the 5 mls. I tried to do some yoga down in the physio room after everyone had left early on Saturday. Yoga has become something I am craving these days as I get stronger and have less involuntary movements and cramps. So I plugged in a DVD and started to work my way through it. Mid way I knew it wasn’t the pain of a Lyme body I was dealing with but a good immune response from the 5 mls. Within the hour I had a hard time standing and walking without holding on to something, the pain was so intense where there was contact I had to keep moving around in my bed and my temp went to 100.2. It reminded me of the reactions I would get from IV silver and gold. Except those temps would be 104, I would be moaning in pain and I would have to recuperate for days. These reactions are significant but I feel better within a few hours. It is a kinder, gentler response.
Dr. Sudeep, has come to my room and I have reported my improvements. Which are numerous in their scope. He has said, “that they will be changing my protocol”. I of course asked what that meant and his response was, “You will be finding out.”
I am a bit of a zealot about two items of my treatment; recording in my symptom sheet on a daily basis and not treating this disease by suppression of the symptoms. This is how I track whether or not the current protocol is working. I feel if I suppress the symptoms then I might attribute improvement wrongly to the treatment not the anti-depressant, anti-inflammatory, anti-histamine etc. It probably makes me grumpier then your average bear but I would rather keep it simple if I can. Oh, and I am a control freak.
Here is what has improved- This is quite brave/ ignorant for me to put this in writing as the waxing and waning of symptoms is a hallmark of Lyme, but here.....everything in bold text has improved.
Current Symptoms- May 2, 2009
Neuro Psyche Flair p.m.- agitated, panicky, racy, crying jags. (occasionally)
Skin Sensitivity- crawling, burning, tingling, numbness, buzzing, frozen feeling. (daily)
Inappropriate response to stimuli on skin- hot feels cold, music can make it numb.(daily)
Ears ache and burn on the tips. (daily)
Pain- burning throughout body. Pressure squeezing sensation all over body. (daily)
Nerve pain- radiates from spine to legs & brain in waves/shocks, feels electrical (daily)
Spine and Brain- Flutter and tremor sensation through out (occasionally)
Depression- accompanies pressure in back of head, neuro flares. (occasionally)
Cognitive Disfunction- Word retrieval, ADD, can not multi-task, confusion. (daily)
Headaches- Pressure, toxic burning in brain and spine (daily)
Eyes ache, burn, weepy.
Right eye pulses,twitches (daily)
Sore throat, chills, flushed cheeks. (occasionally)
Tight choking sensation in throat, thyroid.
Chest pain- tight band feeling around heart. Limited space for left lung to expand. (daily)
Muscle Cramping- weakness, legs and stomach feels punched- contractions.(daily)
Stiff and achey- mostly in large joints, hips and shoulders, back pain. (daily)
Feet and hands ache- stabbing pain, arthritic. soles of feet painful. (occasionally)
Fatigue- crash quickly, overwhelming. (daily)
Insomnia- accompanied by buzzing in pituitary and pumping in sternum. (occasionally)
Stomach- burning pain, punched and cramping feeling. No appetite. (daily)
Nausea- in throat and stomach.
Bladder- urgency, frequency and pain. spasms, leaking.(daily)
Pelvic Pain- burning and cramping.
Light, Sound Sensitivity.- Worse when neuro symptoms are heightened. (occasionally)
Lymph Nodes swollen and painful. (daily)
General Overall Ill Feeling. (daily)
There have been symptoms that have returned. Shoulder pain, pea and grape sized lumps behind my ears in my neck are two, as well as the feeling of cold eye balls as if they are in ice water. Not to panic. Here you are told to look for re-tracing. Those familiar with Homeopathy will understand this concept. Basically as Dr. Ashish Verma explained it you will follow the path of your illness out the way you came in. Not hitting them in say chronological order per-se but revisiting the illness in sound bites compared to the intrenchment that happened during the chronic illness.
May 6, 2009 - Proceed
So not two minutes after the save button was deployed onto my blog’s last post, detailing my frustration with my lack of procedures, I received a knock on the door. It was Sister Anjolie with the news that tomorrow I would be having my first procedure. It is a caudal where they inject the stem cells around the lower end of the spinal column. I was in the bathroom rinsing out the daily laundry in my underwear when she poked her head around the corner to spring the news and watch my reaction. What surprised her was how calmly I took the it. It is no secret that I have been lobbying for a spinal. I see it as an elevator to my brain where all the legions reside. Time to kick the spirochetal party out of the pent house. They have been behaving like the Beastie Boys in their 20s. I was sorry to disappoint Anjolie but my inner self went into management mode. My last spinal in the States was a disaster with a nervous intern trying 10 times to get fluid out of my spine until the nurses who were holding me down insisted the attending take over. He got it on the first try but the damage had been done and I spent the next week flat on my back with a spinal leak unable to raise my head above my heart without the dreaded lumbar headache pushing me down.
Dr. Ashish Verma is not an intern. He exudes confidence and this is what he does all day. Day in, day out, anesthesiology in action. I trust him the way I trust Dr. Horowitz. I was not worried about his ability I was just trying to erase the bad taste from my mouth of the previous spinal.
So spinal day comes and I am too ill to do my routine. I lay in the park on my yoga mat close to tears. Every symptom is making a full court press. Nausea, pelvic pain, headache, chest pain and burning spine. I am weak and all I want is my bed. There is no fever so I am still a candidate for the spinal, but Sister Joan is concerned. She wants me to speak with one of the many doctors playing musical rooms here. In the end Michael and I decide I am a multi-tasker and loosing another day in bed is not in keeping with the way I operate. So if one feels crappy enough to be in bed then why not have a spinal and have to be flat on your back for 5 hours. The only thing I was worried about is the nausea. So I took a pill to quell the urge to throw-up. For the mental prep I listened to chants for Ganesh. He is the Hindi God who is the clearer of obstacles, because who would stand in the way of an elephant? and guard of the pelvic floor. It all sounded good to me.
They came to get me at 12:30 p.m and I was allowed to wear my pants and a smock that opened in the back. The allusive operating theater sits right at the end of my 3rd. floor hall. Glowing white-blue light doors framed in chrome. It is a busy place a few days a week but only for the caudal procedures. If a patient receives a 2 or 3 day procedure it takes place at Gautam Nagar Hospital. Once an elevator big enough for gurneys (trolleys) is built on the exterior of the building here then patients will have a way of getting back to their rooms while remaining horizontal.
So in I went with Sister Joan and the 3 operating assistants to an inner corridor. We waited here while an air vacuum system was deployed and then into the operating room. Modern looking with all the accoutrements of an O.R., comforting in its order and cleanliness. Dr. Ashish was there already. He was a little more amped then I am used to seeing. My first thought was he is nervous then I thought about it and determined his energy was more like a race horse being led to the gate. After all I was his 4th of the day. I was positioned on a very narrow table which is hinged in the middle. My upper half was lowered and my pants pulled down so that Dr. Ashish could have a better angle at my tailbone. He asked me where my majority of my problems were above my chest level or below? This is a difficult question to answer, especially being upside down. My brain has all the legions and my heart area has a great deal of pain and those two rank pretty high in priority....... then there is the spine which burns and is the source of the CNS involvement. I really didn’t have a good answer. But I told him the spine which is where he was going anyway. For the spinal patients it is more cut and dried as there is an area of injury where he can focus.
I asked him to talk me through it as he was going along so I knew what was coming. They are aware at this point of how I like to know the plan. The area was first swabbed in iodine. Cold and wet. I did know he was approaching with the first needle before he said anything because 2 pairs of hands grabbed my legs and feet and one laid on my back. He prodded around in my tailbone which is amply cushioned so it took some configuring then told me he would be putting the needle in and starting to numb the area. The rest of my report is sensation. Pain, pressure and warmth, with Dr. Ashish asking me where the sensations were going. Left hip, around to the front of my pelvis and down my left leg. Then in to my right hip each time he fed a new tube of stem cells in I hummed through the pressure and focused on keeping my breath even and fluid. He was finished in about 15 minutes and I could tell he was relieved it had gone so well. He told me I had to remain flat on my back, no moving for the next 4 hours. To keep it exciting the foot of my bed would be raised about 8 inches so the stem cells would make their way towards my brain. There was a bandage and pressure applied to my tailbone and I rolled over onto a gurney and down the hall to my room.
It was great to see Michael’s face peering down from our doorway. Home. Bed. Did it. Was all I could think. The gurney (trolley) didn’t fit in our doorway. So they tried tilting the top of it....with me on it. That didn’t work and then they were all speaking a different language punctuated with sister, trolley, and me saying excuse me with my hand raised from the horizontal view point. I told them to take me into the room across the hall which has a wider door and then straight across through my door. They liked this idea and knock, knock I was pushed into my neighbor’s recovery room for a brief hello and across the hall into my room. Hardly the touch down I imagined as I was now in my room but facing the wrong way. This is where Indian manpower and go with the flow mentality comes in to play. The 3 orderlies and Michael lifted the gurney and turned it in the 8’x6’ space with not an inch to spare. They twirled me while walking over Michael’s mattress on the floor, which in the heat of the moment no one seemed to notice had our lunch trays on it. They climbed on my bed and pulled me onto my mattress, lifted the foot of my bed onto bricks and were out the door and on to the next patient, leaving Michael to adjust me and wash dal and rice from the blankets. I had to urinate immediately as I always seem to. But the catch was I had to wait 4 hours. I could be catheterized but holding it seemed a better option. Half way through our new neighbor and only other 3rd. floor resident, Jill came for a visit and Michael and I put on our best Lucy and Ricky show, with quips and banter. Jill is not able to speak right now but she sure can laugh and laugh she did.
When my time was up I limped to the bathroom for the biggest relief of the whole month. I turned around in the mirror to see exactly where the wad of bandages were and to my surprise I couldn’t see them. It is here where I learned exactly where the tip of my tailbone resides. If it where an animal it would be a bat as it has an aversion to light.
So I did it. Dr. Ashish told Michael I was his best patient yet......but I bet he tells that to all the girls. No longer the 40 year old procedural virgin of NuTech. When others speak of their procedures I no longer have to change the subject or sit in awkward silence, thinking.... “they all know.”
May 8, 2009-
I am in bed with some raging Lyme symptoms. Dr. Sudeep has come to tell me that this can happen as they increase the doses of the stem cells in the second month.....or you can feel better. It is the usual cast of characters with some new twists like this morning the rattle of a tractor engine outside my window started the buzzing in my pituitary. This is a first as usually I have to be on the cusp of sleep for this symptom to poke it's head out of hiding. So I feel lousy, kind of cranky and in need of a good laugh. Poor Michael. I know Robin and Jenna are oh so relieved they missed out on this stage of the treatment.
So here it is.I am lying in bed, half propped up and looking for something to post. And this is what I have come up with surfing through the last upload. Note: I took full advantage of Michael's jet lag to get this to happen. He hadn't even been in the country 12 hours.
I have had my eye on this dusty little hole in the wall barber shop for some time. It is insanely prudent in it's spacial verses functional relationship and it is such a great color. I have wanted to get my lense in there at some point but have not been able to come up with a reason.Until.... Michael shows up with a half clipped head from Maine and I am given my golden ticket.
Before the haircut.
This is during.
And for all those who wanted to do this to Mike at some point but were afraid of the consequences...... live vicariously.
Changing of the Guard, Part II
The Mighty Michael Takes Over
By Mosi (Aunt) Robin
As it was in the beginning, changed somewhat in the middle, is now as it should be.
Michael has arrived, relieving me of duty.
It’s a spectacular spring day in Walla Walla, Wash., where everything has greened up nicely, our dogwoods are blooming and my randomly placed perennials are throwing in their lot with the rest of the front runners of the season.
The lushness of color, the orderliness of the external world, the lack of constant street noise, are a startling counterpoint to New Dehli, where tooting one’s horn is required for safety. Hence 14 million people are tooting their horns incessantly. The people trying to cross the street, unfortunately, have no horns. Being a pedestrian in that city is a lesson in humility.
And yet … New Dehlites are the most generous, polite, heart-centered people I’ve met in my travels.
In their world it’s all things, all the time: The colors, smells, textures -- the art. India is too much to absorb.
When Hazel decided to go to India for medical treatment for her Lyme disease, I had my doubts about the efficacy of stem cell treatment for Lyme. It was new, it was in India, it seemed experimental. There were many e-mails between us, discussing her condition and this treatment, which appeared to be a last-ditch effort to cure her.
I read up on embryonic stem cells and this cutting edge procedure, as well as Lyme disease. I had, at best, a modest understanding of the effect Lyme has had on Hazel’s life.
But she needed support and I’d been absent in her life for so many years, I took it as an opportunity to get to know her better, to be the aunt and the friend I had not been before.
Nothing like a dorm-room sized space to make for one-on-one time.
What an amazing, pee-your-pants funny, pee-your pants scary, life-changing experience this turned out to be.
Hazel was undergoing something others who had been through this treatment likened to pregnancy. The stem cells, after all, are referred to as “babies,” and the recipients are required to abstain from any alcohol, smoking -- the usual nos (not that they’d want any in the first place), they have mood swings and crying jags.
I fully expected a hormone-filled, stressful stay in an 8-by-10-foot room, requiring all the skills of a real-live nurse and the patience and forbearance of Saint Theresa – none of which I have in any abundance, but hey, people can step up sometimes.
Instead, attended by the loving, giggly sisters, looked after by the incredible Rita, the Rajini of the Room, who kept our tiny space clean and made sure we had everything we needed (why do American women use so much toilet paper?), well fed with Gautam Nagar veg – she never took it for granted that that’s what we wanted even though we never ordered anything else -- it was a breeze.
Mostly, though, it was a breeze because of Hazel.
She is undoubtedly the most courageous, creative, openhearted and downright scrappy woman I know.
The treatments are not fun. When she has a bad day, it’s pretty bad – in bed, feverish, her skin on fire, unable to breathe properly. But when she feels better, she does yoga in Deer Park with a group of elderly Hindi men and women, cares for a group of wild-ish dogs. She’d adopt them all if it were possible. That’s how big her heart is.
And now, I am a recipient of that largesse. I would never have come to India if it hadn’t been for Hazel. And now I have had the most amazing experience of my life. I learned the following is true:
"To feel the intimacy of brothers is a marvelous thing in life. To feel the love of people whom we love is a fire that feeds our life. But to feel the affection that comes from those whom we do not know, from those unknown to us, who are watching over our sleep and solitude, over our dangers and our weaknesses -- that is something still greater and more beautiful because it widens out the boundaries of our being, and unites all living things."
-- Pablo Neruda (b. Chile 1904) Rita on her way home with her husband.
May 11, 2009- Be careful what you wish for.....you just might get it.
When I have periods of this illness like I did last week it is a great challenge to remain positive and hold onto the reality that this too shall pass. I am good about 3 days into it and then I feel as if the blind fold is placed on and I am spun around until I no longer know which way is North. Where am I headed? Am I getting worse? Why have I not improved by the Holy Grail of weeks, #6? This is some of the inscessant dialogue that prevades my thought pattern. The mind is bored not being out and about it causes trouble.
I got everything I wished/ asked for dose wise, lots and lots of stem cells in veins, thighs, arms and spine. It started the Saturday Michael arrived with a 5 ml. dose that churned up an immune response reminisent of I.V collodial silver, shakes, chills, fever and body aches that left me rolling and thrashing in the bed covers for about 6 hours. This first punch was followed by one right to the tailbone with a spinal procedure on Wednesday and then the knock down 5ml. on the following Saturday. The central nervous symptoms were raging as were anything that had to do with organs like heart, lungs, bladder and stomach. My head pounded in and out and I felt for the first time since being here, I would like to go home now.
I missed yoga 5 days in a row which attests to the state of things. My friend Sardin had invited us to a party after yoga and we missed it due to the centrivical force of the bed.
When things hit the fan like this I start scrambling mentally. I start pouring over my health journal and records trying to find a method to the madness..... this time I even did a graph. I had an idea that the 5 ml. stem cell doses were the culprits behind my sudden decline. I mapped out the last month with doses ranging from IMs, IVs Infusions and the much sought after spinal procedure on the top, daily ratings on the side and the dates along the bottom. When I was finished it resembled the Himalayas. I highlighted the days of the big IV pushes, the ones that cause the immune response and I could see that these were something that my body had a hard time recovering from. Then add in the spinal and some infusions in the week of take-no-prisoners and we had ourselves some bedtime.
When I went in to Dr. Shroff’s office for our weekly chat she was thrilled by my graph as she said it illustrated exactly what she and Dr. Ashish were telling me would be happening. They have lessened the dosing this week to IMs and smaller doses of IV and infusions and already my central nervous system has calmed down. The burning in my spine and pain through out my body is quieter, my body feels lighter, stronger and flexible. Every day the traffic noise of chronic illness dissipates into the back-round a little more. I am enjoying this. A woman in yoga today told Sardin to tell me that I was so healthy looking and did the poses so well that I did not look like I was a patient. I laughed and agreed. It is here in these moments, when what is happening in my body jives with what is coming at me from another's perceptions that I stop and own it. Yes, I am healthy at this very moment and I ask my body to remember this feeling and hold it as a point of reference for a way to return again and again.
With so much bedtime I poured through my new favorite book, Love Delhi and planned an adventure for the first day I felt well enough and would coincide with the temperature being kinder then the 105-108 it has been of late. For all those worried about my wilting factor under such heat I keep my room wonderfully cool, so much so the sisters refer to room 302 as the Himalayas. Here at NuTech you can be quite comfortable in your room. Like Frosty the Snowman crossing with a mosquito you are only really able to be out in the early mornings and late evenings.
Lessons from India- May 12, 2009
Gratitude swirling in at every turn.
Blessed is the peace of my body.
When pain is silenced.
The vibrations of nerves in their sheaths stop rattling like sabers during war.
My muscles unfold exalting in the peace of length and relaxation.
Flowing into poses one after the other.
Strength behind every movement.
Held firm with flowing breath.
With out complaint.
These moments held like baby birds in the palm of my hand
and I marvel at each delicate feather,
memorizing the preciousness of each breath.
May 13, 2009- Chandni Chowk Fun Park.
I mapped out an area and things to do and experience in Chandni Chowk, or Old Delhi. My quest would take us into the winding, narrow streets of the real India. We picked up our guide, Kalu outside the Red Fort and climbed into a rickshaw with a 120 pound man peddling Michael, the guide and I around cars, scooters, buses, and wagons loaded with spices, fruits, nuts and bags of chapati flour. 7 million people a day make their way through this market place. It was incredibly hot and I watched the sweat seep from our rick-shaw driver’s back and soak his cotton shirt as his whole body weight shifted from one pedal then to the next to move us forward. Michael and I were pressing the tops of our heads into the canopy, and straining to hear what our guide in the back was pointing out about different landmarks. Which we had to bend to see due to the proportion of the overhand and our relative height.
I had an agenda. I had 5 sections in the market I wanted to visit and I wanted to make sure I saw them before I succumbed to the heat or some symptoms ramped up. I was figuring I would have about 4 hours and yes, red forts are nice but I wanted color and to know the lives that exist here. Kalu was a bit perturbed at first that I had a list as he probably had his whole tour mapped out but he got over it and ohm nava Shiva, was enjoying himself with my enthusiasm.
You can experience our first view of the place here- sorry smells are not upload-able.
This place is intoxicating for endless reasons. All human. Spice and sweat. Heat and the weight of commerce. We ended up in a pre-destined stall. Pre-destined because Kalu gets some coin for bringing us in. The young man seemed jaded to westerners like we were all playing a scripted roll and he was mouthing the lines of spice dealer #1. He gave some pitch about how the cinnamon I was tasting was the best in the world..... only found in...... He sprinkled some powder into his hand for me to taste. Waiting for me to ex-halt in its complexity.
I said it was flat and tasteless. Which seemed to throw down his script and enter into the land of spontaneity. He and Michael had a good banter going and I started sticking my hands into sacks and tasting spices and dried fruit. Dried green mango was a new taste I loved because of its tartness and the cinnamon bark in big chunks had me shrieking with delight. There were almonds the size of baby’s fingernails and figs strung in discs like the wining chips at a casino. I was in a foodies heaven. Michael splurged on a small tin of saffron while I stuck to a pre-combined powder masala for our chai every morning.
Here is Michael being my dress-up doll.
Beautiful doors of the silver street.
Onto the Attars- Dariba Street.
The Attars were the original Muslim alchemists. Today the same family runs the shop, Gulabsingh Johnmal which specializes in aroma therapies, incense and pure oils with nose-bud leading names like First Rains of the Summer, (Attar Gil) which held the scent of dust being rinsed from hot grasses and pavement. Their attar is made using sandalwood oil and flower essences. I found most of the oils less then intriguing but I am particular and jived only with the lemon grass and an incense stick of sandalwood.
Sticky, greasy, sweet and salty, vegetarian dripping mouthfuls. We were heading down to Chandni Chowk food stalls to do some tasting of samosas It was dark and our obnoxious taxi driver was calling every 15 minutes to see what we were up to. I was low blood sugar and staring with rapt attention into every shop window that held a shiny object when I saw a narrow little shop selling Tibetan and Hindu artifacts. I had been looking for a Medicine Buddha relic for a friend and perhaps a Ganesha to keep things moving in the right direction unhindered, because as Michael says, “who is going to stand in the way of an elephant?” Up to this point the brass and carved wood were so expensive I couldn’t crack open the pocketbook. We are on a tight budget though by Indian standards we are kings. The lesson of relativity. So into the Tibetan artifact store I go and greet the shop keeper on my way to the back where all the masks and carved wooden pieces lined the walls, a chorus of frozen grins. One wall held a sturdy shelf crammed with brass figures of gods, the many incarnations of buddha and palm sized animals for good keeping. I found a wonderful Ganesha, in such a dust covered state it made me feel like I was unearthing it from a dig. I loved how Ganesha held a relaxed pose on a caravan with all his friends like the mouse and duck. I asked how much and the man chuckled and said, “you have a good eye, this is very old.” Translation...... very expensive. Yes even my queenly self found the price tag of $ 20,000 rupees out of reach. He ushered me towards the beginning of the line of shelves and said look here. They must have been in chronological order. While I picked up figurines and turned them over in my hand we spoke about meditation and his practice. I asked how long he meditated each day and he smiled and said, “ 24 hours. Meditation is to be done in life. Whether you are working, sleeping, eating it is all meditation.” I picked up a meditation bowl and started to make it sing by gliding a wooden mortar around its edge like a crystal wine glass. He smiled and said that this is the sound of Ahommmm. The beginning of life and I should start my practice with this sound as it will connect me with the universe. I was loving our conversation but was wilting in the heat. He handed me some water and turned a fan on overhead. That is when I saw a more modern version of the Ganesha sculpture. Heavy brass with all the accoutrements of the Lord and his journey. I asked how much again and he smiled said that is only $ 1200 Rupees. I was ecstatic. I currently have a wonderful Ganesha on my nightstand as I type and I have a wonderful experience to relate to it. I look upon it and smile and remember with fondness our afternoon in Chandni Chowk, the real India as Kalu would say.
So onto food. I was feeling celebratory in nature and greeted our rick-shaw driver with, “ Samosas on me, take us to your favorite stand.” We headed to Japani Samosawala and ordered the green pea samosas with drippy green coriander-mint sauce and a spicier red sauce with a nice bite. There is food being cooked every few feet in Chandni Chowk. The air is thick with grease and spices. I must say if you have high cholesterol, India would not be the place to come and expect to eat in keeping with any restrictions. They love their oil and their sweets. Fried dough is dry compared to the oily jalebis. Michael was in state fair heaven. I loved watching our rick-shaw driver smiling away through his samosas. Our guide had just put in a fresh wad of pan so he abstained from the delights. We then crossed over the street and ordered a parantha to go. This potato, dal filled wrap was bundled lightly in newspaper to keep it warm. Michael and I tore off pieces of it as we were peddled back through the market on the way to our impatient taxi- driver at the Agra Hotel. Our peddler pulled three grown ups through the market shoving people out of our way with his left hand, avoiding collisions on a minute by minute basis with scooters, dogs and pedestrians, crossing 8 lanes of traffic at night without traffic lights and a scratch on our person or his ride without gears in 110 degrees. I had a new hero.
When we reached the hotel and time to settle up Kalu taught me a lesson in the price of gratitude.
He asked me.......
How did you like Old Delhi? Kalu, I loved it.
Did you have a good time? I had a wonderful time, thank you.
Will you tell your friends to come visit us? Yes, yes.
So pay as you like. He wouldn’t even give me a ball park so I handed out what I thought was worth their efforts. Put in perspective I pay the pimply, whiney teen that rakes our lawn in Round Pond the equivalent of 500 rupees an HOUR! and I have to babysit him the whole time.
I gave the peddler 500 rupees. (ten Dollars US) I gave Kalu 700 Rupees to be sensitive to his efforts as guide. The peddler was so happy and grateful and I could tell Kalu was as well. I felt relieved I had made them as happy as I was at that moment and all would go to bed with the satisfaction of a day well lived.
Cultural Lesson # 840
Never pay a rickshaw driver 500 rupees infront of the taxi driver who is making the same for 4 hours worth of sitting on his ass in his car. Major no-no. Keep them as separate as food on a toddler’s plate or you will see the same sort of tantrum.
In my defense, the driver should have stayed with the car and not come over under the street light to watch our transactions. It is none of his business. But as there is no patient privacy in India evidently, there is no sensitivity to another’s wage scale either.
His name is something like..... Inderjsing. Rhymes with Injuring as in will cause bodily harm to your good time. He is to be avoided at all costs. He tried to steer me into a basement tourist bizarre and I said, “no-no I went the other day.” Our usual driver Ragiv who we really like, because of his gentle nature and HONESTY had come clean and said, “ if you go into this bazar they will pay me 100 rupees. You don’t need to buy, just look.”
"Of course," we said.
So grumpy pants did not get his way as I was elatedly exhausted and ready for home. We got in the car and he turned around and said, “listen you will pay me 800 Rupees.”
My response was, “How so?”
He said you said, “2 hours you have been gone for 4. Now you pay me 800.”
I said, “No. We paid for 4 hours of which you were not burning fuel, or escorting us around you were waiting. We will give you the agreed upon 500 (which is 100 rupees more than we usually pay) and 100 rupees for the additional hour. So 600 total.”
“No Mam,” came his reply and it went on like this for another 10 minutes arguing in a steaming car. He only moved the car when I threatened to get out and take a tuk-tuk all the way back to Green Park. I couldn’t understand what his problem was until we came to a light and he broke the palpable angry silence by turning around and yelling, “you gave a rick-shaw driver 500 rupees! a rick-shaw driver! I have big car!”
I yelled back,” I will pay more for sweat then gasoline. You sat. He pedaled!” Evidently the caste system is not dead.
The light turned green and I told him to pull over to a line of tuk-tuks. I like emphasizing my point and was fed up with his anger. He refused and said he would be taking us back to Green Park. If I hadn’t been so exhausted I would have forced the issue. Michael was concerned that I was letting him ruin my great experience. I asked him to take over paying him when we got back to the clinic and I practiced deep breathing all the way home.
I left the door open at the clinic and headed inside an watched Michael continue the same discussion as happened in the car outside. Michael tried to pay him 620 rupees and Indersing could not let go of the fact he was making close to what the rick-shaw driver was paid. I watched from the elevated clinic lobby as he paced and fumed. Get over it.
Was I culturally sensitive? No.
Was I humanly sensitive? I would like to think so. Probably not to Indersing’s wants. I was a pre-school teacher and a nanny for too long to give in to tantrums and this is how I saw it, a giant tantrum by a 50 year old baby.
By the way Indersing calls our mobile. Whether to continue the argument or apologize I don’t know. I do not pick up, as this is not something I am willing to chance for the answer.
These are some Chandni Chowk favorites.
May 19, 2009
Laughter is the best medicine.
Pretty early on in my treatments here I met a man outside of the park standing around the coconut stand. Sardin, a man in retirement is quite friendly and would often invite me to join his group for yoga. The daunting task was that it began at 5:45 a.m. Although I get up early to do my rounds of dog packs and feeding schedules before yoga at Seema’s Studio, this timing was intimidating. Sardin assured me that I could join at any point and some how I have, with Michael’s help been able to get out the door in time for the class. They have also changed the starting Om to 6:15 a.m , much kinder.......... Shoo-kree-ha-ji.
Sardin is an educated man. He is a philosopher and academic and one of the warmest and sage-like beings I have ever met. He has his P.H.D in English Literature and was, at his retirement principal of Delhi University. He volunteers in a social work and teaching yoga and has gone back to school to get his Law degree. Needless to say he is busy but he never is rushed or preoccupied. You have his full attention when in conversation which is always relaxed and peppered with hearty laughter.
One of my first delights and only in India moments came during my morning strolls through the park. I would get up early to beat the heat and take a walk in nature as a way to stay connected to where I feel most at peace. The parks here a well used, much like they are in most cities. You have your walkers, those tucked away on benches in deep meditation and stages of prana, deer feeders, bird feeders, altar attendants, worshippers in chant, pedestrians on their way to work and even a jogger or two. The groups that gather are meeting to do yoga on the lawns. They bring plastic sheets and a blanket and set up class amidst all the bird calls, dog fights and daily life of the park. Part of each class, towards the end is a pose called laughter therapy. From mat I can hear bursts of racaous laughter through out the park. A throwing of hands in the air, heads tilted backwards mouths open like a nest full of baby birds letting go a good old fashion belly laugh. So you don’t feel like laughing? Feeling self conscious? My advise to you would be fake it until your make it. And you will make it, as laughter is the TB of emotions, highly contagious. I could raise the degree of feeling better a few notches just by laughing with the others in my group. The harder and louder I laughed the bigger my classmates smiles and louder their laughs. So go ahead and try it. Try everything once. Twice if you like it.
Some of the onlookers that gather to watch Michael and I do yoga each morning.
May 20, 2009- Guatam Nagar
I was sent over to Dr. Shroff’s other hospital, Guatam Nagar for my second spinal procedure. They have an elevator which can fit a gurney so the patient can remain laying down after the procedures, something Nu-Tech will be adding soon. Dr. Ashish has been very pleased with my progress so far and wanted to add the second spinal procedure as assurance. He did not want to be second guessing himself.
We went mid-morning after I had done my rounds of yoga, physio and dog feedings. The hospital is tucked back into an alley way, off the main street and along side a children’s play ground and supposedly a piggery which I neither smelled nor heard. I much preferred the sound of children to the incessant horns of Green Park extension. Even the child who decided to defend himself with a rock against the rest of the boys sounded like music. When you can not translate words even anger can sound rhythmic .
The hospital will remind those of the European back-packing set of the clean yet off the beaten track hotels and hostels of Paris and Italy. The main reception area holds a prix-fix menu for labor and delivery. Want your basic no-frills 2 day delivery/stay without doctor or medication? This will run you about $150 dollars U.S.
The rooms were more spacious and better laid out then the rooms over at Nu-Tech. There is a large room length counter to place stuff on, the fridge is stored in a cabinet, there is a couch and high ceilings sporting lights and the bed was quite comfortable. The bathrooms are tiled beautifully and equipped with tissue paper roll hangers something over looked in Nu-Tech’s bathroom design. There is however no internet.
The sisters of Gautam are a happy bunch as well. That is until they were sent in to start an IV for the antibiotics and “incase”. I am a hard stick. I will fully admit it. I had perhaps become a little over confident with the ability of the Nu-Tech sisterhood. They would usually hit it on one or two, with the rare occasion being a third time charmer. The sisters at Guatam poured over my veins like pages in a phone book, their fingers tracing each shadow and line for the possibility. I suggested a deep yet strong current that nears the surface above my right elbow. They didn’t like that option. So the sticks began.
So I don’t sound like a whiner I will condense into facts. Three sticks of the I.V line into each already bruised hand, one resulting in a vein but alas a clot prevented it from running. The needles were large enough to run a plastic tube within and it hurt enough for me to pinch my upper lip in twist to keep from making a sound. I had seen it used throughout my childhood to make divert the horses attention, I thought it might hold merit. By the second hand Michael came around to let me squeeze his fingers and paint pictures of blissful summer days on Loud’s and Harbor islands.
When they gave up on my hands and moved to scoping out my feet and I grew upset. I don’t cry or scream. I roll over into a ball and wish it all away and I make jokes. I told Michael that I thought once a sister could find a vein they graduated to work over at Nu-Tech. They did leave to consult with Dr. A and return to say he would be putting the line in when I went to the O.T (operating theater). Thank God, I thought. I rolled over and slept for about an hour and a half and awoke to have our Guatam Nagar Veg piping hot, fresh from the source and I might add a much larger salad and papadums. We were going to have to speak to Rita. They were holding out over at Nu-Tech.
The blue-man troop of orderlies and operating room assistants came to collect me right after my last chapati wiped my veggie bowl clean. Onto the gurney where you watch the ceiling go by like an infant in a stroller. No wonder humans want to sit up so quickly.
Dr. A was his usual cheerful and assuring self. He came in to look at the same phone book the sister’s had used and decided the tops of my feet were the best option. I had used the tops of my feet to during the colloidal silver and gold rush of 2007. They were very small and blew quite easily. What Dr. Ashish was about to stick in them was a bigger mouthful and I am sure they would have something to say. He assured me it wouldn’t hurt. I believed him. After 3 failed attempts on my right foot to which I almost twisted my lip and eyebrow off my face. He moved over to my left. I raised my hand from gurney land and said I have a suggestion. I went into used vein salesman mode for the right arm elbow model and sold him on it. Damn! if she didn’t fire up on the first start and without pain.
So there vein accessed and now onto the hard part. Problem was after the days events I was feeling like I had already been through the procedure just from the IV line. So onto my side, blue gingham smock open to the back and flapping in the breeze. I asked one assistant for his name. Celestian. I see him outside my room all the time. He is OT assistant #1. He was about to pin my knees to my nose and I needed his name. All I asked for was access for my hand to be able to pinch my face.
There! see I can control what you are doing by putting myself in more pain then you ever could. Hah!
He entered the spinal area around my bra line. First prodding with fingers, decontaminating the area and then dispersing the burning liquid that will numb me enough not to have me placing Celsetian and his buddy in bodily harm.
This time the pain radiated in knife-like cramps from my waist and down my right leg. I kept saying, "little cells wrong way...... you want the cross-brain expressway." It is the patients duty to let Dr. A know where things are happening. It is the only way he knows for sure that he has correctly placed them. So I decided to stop pinching and gasping and start directing. Sharp little staccato quips. Right leg. Waist. Back.
He reassures you the whole time.
The relief was palpable when he finished and was bandaging up the entry site. It is over. I told myself what ever I wanted I could have after this. I had earned it.
I was to be inverted on my back for 5 hours. Liquids right away..... but chose wisely as you will need to be catheterized if the urge persists. Solids, like the additive rich ice-cream cone I was craving, after an hour.
The blue man troop brought me back to the room in orderly fashion and with Mike’s help transfered me to the bed. The foot of the bed was raised on bricks so the stem cells would make their way up the spine rather than to the feet.
Michael’s comment of, “that was quick.” Did not go unpunished.
45 minutes is quick for say....... the best sex of your life, a 5 star meal or a block buster movie. It is not quick for a spinal procedure.
What made it the next 5 hours pass with relative ease is I limited my liquids to sips of coconut water every hour or so as to keep the pressure off my bladder and having a rolled blanket under my knees that could relieve some of the cramping in my back that seems to plague me during these procedures. I also realized my laptop could play on its side there for I could watch it from a reclined position with my head turned to one side. I lost myself in Amelie and Everything Illuminated and ate an ice-cream cone with a nice touch of chocolate hiding out in the very tip for a happy send off .
We were up by 8 p.m and walking down the dark alley from the hospital towards our awaiting cab. The children still climbed and swung on metal bars in the playground, inscence and bell ringing filled the air from a corner shrine, lit with a blue neon bulb and bright orange garlands of marigolds. I watched the devotees, I felt absorbed and gave gratitude for the abundance of stem cells that were now well entrenched in my spine and brain. Set up camp. Entire villages and farms,reclaim these damaged areas with fresh growth and vitality. Build like only the Indian people can, little cells, with sheer force in numbers and relentless determination.
May 25, 2009
stem-cell update: we are doing great.
doc says to embrace the changes my body is undertaking.
May 22-31, 2009
Winding Up to Leave.
As the days moved away from my final procedure I experienced the nose dive on my symptom graph into the 5 range...... which states on the chart, “in and out of bed, feeling horrible”. I would grab a 4 (functioning but not well) here and there but basically I was trying to ride out the new onslaught of neurological symptoms that appeared on a daily basis. I expected this, as this had happened to an extent after the tailbone procedure. So I just decided to wait for the winds of symptoms to reverse itself. The down trend started two days after the procedure. I pushed myself to get over to the yoga studio on Friday and do a Vinyasa class. In the middle of plank pose I felt a stabbing pain up my neck and into my brain behind my left ear. It felt as if something burst. I froze and told myself it was just new cells making their way up to the brain to clean some spirochetal house. I rode each jolt out trying to focus on my breath and the poses that were flowing with dripping fluidity.
By Saturday things were getting interesting. For one, the depression returned after a 6 month hiatus, moderate and steady. Not situational but in direct result of the pressure building in my brain. Thinking became a chore, composure an effort. I know this symptom. This is what happens when I kill off a bunch of “bugs” in my brain and there is an onslaught of neuro toxins. I then realized that this is probably a result of the IV antibiotics I was given during the procedure and not the stem cells. The buzzing sensation in my left shoulder started to travel and by Monday it had gone up my neck, under my left eye and into the back of my head. The tremors in my pituitary started to fire of 24-7 and my legs and hands became like electrical conduits firing off.
Tuesday, I am verging on panic. I have the sensations that my legs and hands are moving and when I look down they are still. There is a return of the burning pain that feels as if every cell is a furnace and I am feeling like I am having an out-of-body experience. Dr. Shroff and her posse of in-house docs come by for a check-in. If I haven’t said enough how much I like Dr. Shroff then I will say it again. I really like her. She is smart, strong and knows the process of stem cells and what they need to flourish. I will say that I am less impressed with what the doctors and the clinic know on a whole about Lyme. This is by their own admission. Dr. Shroff herself has stated she does not know Lyme Disease, they don’t have it in India. So when the Lyme shit hits the fan and you are 7,000 miles away from your Lyme doc who is now operating on 180 degree time shift from those at the clinic then you can start to panic. I think I am getting worse. The treatment hasn’t worked. What am I going to do?
Dr. Shroff had a different take on things. First she told me she believed me. That all my symptoms were real. Which made me wonder who thought I was faking it? She asked me to tell her each symptom that had returned and when in the course of the last 15 years I had experienced it. I checked off what was surfacing: headaches, neck pain, swollen lymph nodes, depression, chest pain, electrical tremors, cramps and weakness of the legs.... all had pretty much been with me all along. When I got to the tremors in my brain and spine that made each moment of the day feel like an after shock I felt my stoicism breaking up like an ice flow. I started to cry and tried to stop as I remembered how Amy had said how uncomfortable crying made most Indians. I had witnessed it myself down in the physio room. There is not a let-it-all-out response that greets tears or any sort of emotional outburst. They try to quickly put it in perspective and shore up your collapse. Come to think if it their response is universal in the medical field. So I tried to hold it together as I had 4 Indian docs staring at me and then I couldn’t. I started crying hard.
Dr. Shroff reasoned that I was simply retracing all my symptoms at once. This was a good thing. The disease will leave my body on the same path but in reverse as it came in. She was encouraged that I was so symptomatic. This is not a new concept for me. I have had this told to me by many alternative healers and homeopaths who’s care I have sought out over the past 15 years. Dr. Shroff assured me that I would get home and in a week or two from my return I would watch my health start to steadily climb to wellness. I just pray to God that Dr. Shroff is right.
Thursday- Headache and neck pain so great I am in bed all day. I am actually medicating the pain which is something I try to stay clear of as long as I can, but this is long past the heroic stage. My spine still feels bruised from the epidural procedure. I can’t eat due to pain and nausea and dizziness. Michael is out on a secret mission and I am very lonely. Enter Rita. The sweetest and most cherished angel of the clinic life. If I am in bed Rita comes in to see if I am in need........ Milk? Bread? Butter? Biscuits? These words roll off her tongue and though I never need them I simply love hearing her say it. If I am bed bound most of a day she comes in to fret and rub my spine or give my neck a massage. Today was no exception and she lured me to a sitting position with an icy-hot balm neck rub. While she was rubbing I mentioned I had purchased a sari and she immediately wanted to see it. “It is old,” I said in an apologetic tone. Rita is very glamorous outside of the clinic greens and I knew she was expecting the best India had to offer. I pulled out the vintage 8 meters of fabric and I heard a disappointed cluck from her well defined lips. But no matter..... she had me stand and started to school me in the art of the sari wrap. Here I learned just how much of a perfectionist Rita really is. She must have wrapped and re-wrapped me 5 times. Then she showed me the variations. Over the head, over the shoulder, improvising with a hair clip for the sari pin. She even brought out a bindi for her signature finish and the first smile to my lips that day.
Here she is in action.
May 29 and 30-
Friday and Saturday were a little better. I was able to be up and about. Dr. Shroff had ordered an exit SPECT scan for me. Another Lyme patient, his wife and Michael and I rode over in the MASH meets Fisher Price ambulance of the first scan back in April. It went much smoother this time. Without the groaning man in the pitch dark. I felt well enough to have the ambulance driver let us out at INA so I could get some last minute gift buying done. This absolutely fabulous street kid asked if he could do a magic show for me. Michael and I sat down on the curb while he made the small cord wrapped cloth bundles he had fashioned for balls disappeared from his hand and reappeared from the unsuspecting pant leg of a Sikh man. A sizable crowd had gathered to see what held our attention. I gave the magician a 50 rupee note and a standing ovation and the crowd murmured their approval. We grabbed a tuk-tuk on the way home and I told the driver to take us to the best samosawalla he knew of between Dilly- Hat and Green Park. I was buying. We hadn’t had one since Chandni Chowk and were craving the spicy mint-coriander sauce. I felt like Cinderella dancing her heart out in the street adventures of a tuk-tuk ride through the darkened back streets of Delhi. The gonging of the clock was the neuropathy that was spreading it’s way up my left side. Frozen, stiff skin creeping its way up my leg to my stomach, down my arm and inching to my face. I had to get home before the Lyme cloak dropped over me erasing the freedom of normalcy.
I was burning up on adrenaline and rising to the occasions that lay between me and home. One such occasion was shipping our new dog back to Maine. The pup that wiggled his way into my yoga class in Deer Park wiggled his way into Michael’s heart as well. His name is Sheru, pronounced Seer-rew, it is an affectionate way to say lion and this was what the guard at the park gate called him so it has stuck. We shipped him out the night before our flight through Continental’s PetSafe program (which will be a blistering blog entry all on it’s own) so he could be kenneled in Newark and have a break between flights as the Delhi to Newark flight is 15 hours. I was very apprehensive about doing this as I know the toll flights can take on animals shipped below but I was assured by the vet’s I talked to that there is no animal tougher then an Indian Street Dog. I am happy to say he is right.
We kenneled him out near Qutab Minar for two weeks before the flight so he could transition to life as a pet and get use to the shipping crate. Michael and I would try to get there on a daily basis to play with him and the other dogs at Canine Elite. He did really well and quickly became the favorite of all those who met him. The vet said he is about 2 years old and besides the battle scars of turf wars and a ear clipping that says he is a graduate of the Indian governments neutering program he is relatively unscathed. He is a stunt double for my dog Suits that passed away last year. Though he lacks her elite charm he more then makes up for it with quirky mannerisms like mule kicking you to get your attention and being bug obsessed.
Here is a video of him at the kennel.
Here he is on his first walk in Maine. I think he likes it.
The jacks say, "My mom went to India for 2 months and all I got was this crummy Indian dog".
As Mike and I were running out the door to get him to the airport, we got word that Dr. Shroff and Dr. Ashish were in her office and expecting to meet with all the patients on a personal basis. For some of us it was to discuss recent SPECT results. I told Michael to go ahead and that I would grab a cab to the airport cargo area and meet them there.
Dr. Shroff sat behind her large desk and looked up and laughed at my cowboy-ish hat as I walked in. She said I looked very American. She shuffled through a stack of scans finding my name on one. It had a bit of the air of passing or failing a really big test. The anxiety I must have been oozing, the winner please....... Turns out I did win or pass which ever you would like to consider. Out of the six legions on my brain two had disappeared. One on the frontal cortex, one on the back. This is very good news as they weren’t expecting me to have any measurable improvement until I returned 6 months later. Dr. Ashish was very pleased that the stem cells were reaching my brain and repairing the damage. I was pleased that there was something concrete to hold onto during the rough symptomatic patches and the upcoming months at home.
May 31st.- Pack It Up.
We spent some time in the Deer Park feeding all the strays I had cared for over the past 2 months. They were all looking transformed. I had fed them once a day the most nutritious food I could find in Delhi. I had wormed them twice and really watched them get a good start on things. Some people at the clinic asked me why I was feeding them and what were they going to do when I was gone? I thought about this. Really considered this and believe that I gave them a good place to fight from. The same way we all hoped that the stem cells would continue to grow and repair our bodies when we left India I hoped the strength and good health the dogs were deriving from the food and medicine would continue to benefit their ability to survive. Also it is my my nature to do what I can, if I can, to help an animal. Michael put it this way. He said what he loved most about India was the way those I had grown to know beamed with smiles and showered me with love whenever they saw me. He wasn’t just speaking of my yoga teachers, my physio therapist, Rita etc. he was also speaking of all the stray dogs I fed on a daily basis. He said they would smile and dance when they saw me coming. Who wouldn’t like to be greeted with smiles and dancing? So we said good-bye and I said a prayer that the pups stay strong until I can return and get them spayed. The four females who live under the deer cabin in the center of Deer Park. If you happen by, check on them for me. Bring a little food and they will smile for you as well.
So I focused on the day and the tasks at hand. Saying good-bye to my beloved physio instructor Rajni. Who was my laughter therapy as much as physical. The social aspect of it all is so important and really made me see how isolating rural Maine can be. Rajni helped me improve my balance tremendously. When I arrived I could not walk a straight line. I would have failed the sobriety test stone sober.
When I left I could stand on the tilt board balancing on one foot for a few minutes. I could also sit on the large ball and balance with my feet off the ground for 4 minutes. I loved talking about Indian culture with Rajni and the different aspects of what made us who we are. She also taught me how to write my name in Hindi and turned me on to Punjab Hip-Hop.
Here we are after the last physio.
I said good bye to Rita too and if her family wouldn’t have missed her so I would have snuck her home in my carry on. I managed to get a call out to Deepak and Avdesh my favorite ward-men who would let me carry on with more yoga after they had cleaned up the physio room and put all the equipment to bed. I said goodbye to the sisters who are the loveliest group of women on earth. I bid fare-well to my floor-mate Jill and her mom and dad. The clinic was slowly emptying out and had the air of the last day of school. The staff eagerly awaiting their paid month long break where they would retreat to their home states and wait out the stiff heat of June with their families.
By the time Michael and I boarded the torturous flight home at 11 p.m Delhi time and I realized we had unknowingly packed my pain medicine and sleep chariot below in our checked luggage I fell apart. The emotion of the day and the escalation of my symptoms to exhausted epic proportions brought down the house. I sat and sobbed into my new kurta while Michael went to ask a fellow clinic patient who was on the same flight for some pain medication as my head and neck were throbbing. Why the tears? Well, there is the known fact that stem-cells make you weepy. I was in a ton of pain and exhausted. I was leaving a place and its people I had grown to love and headed home without a game plan.
I think what is so hard is that I was doing so well. For one blissful week just 10 days previously we celebrated in the fact that I was feeling much better. All the doctors said this is where I break the glass ceiling of my “best” days and plateau into feeling well. I think the hirer you go the further you have to fall if things don’t go as planned. I was set for my old life with new health. I had expectations and crawling onto the airplane in the state I arrived was not something I had ever envisioned or I could handle well emotionally. I sat in my seat having a symptomatic deja-vu of my trip to Delhi in April. There is the immediacy of getting thorough the task at hand which was surviving the flight in tact. In the back of my head was the nagging realization that I was not on schedule with the improvements of the others who had gone before me. I am comparing and perhaps that is not advisable. Now I am 7,000 miles away from the stem cell docs and when the shit hits the stem-cell-fan I am with a Lyme doc that doesn’t know stem-cells, admittedly.
I am confused. I want to wrap this up in a tidy bundle and plaster a happy ending across the marquee. I would like to be in a place where I know for sure. Say things like, without a doubt. India held so many gifts and realizations I am just not sure it held the one I went there for. I cling to two life rings to weather out this neurological flood. I have had visible improvements in my SPECT scan and others have gotten better. Dr. Shroff said to give her 15 months. That the cells need to grow. I can do that. It is the hope I hold out in front of me and if I have come to know anything for certain, I know hope floats.
June 8, 2009
My Maine Concern-
I am here back in my own bed. Unfortunately a little more than I would like and in a head space that I am trying to combat. Lots of tears. That has been said to be part of the stem cell process. Especially upon returning. Fear lays out in a big part of this for me.
I am experiencing a great deal of neuro symptoms. This means lots of buzzing, twitching, crawling and frozen sensations in a continuous bombardment on my skin and muscles. It is mostly my left side. Probably the most bizarre is the sensation that my leg has just moved, like I kicked at something and I look down and it hasn’t budged. It is just sitting there..... like hey it wasn’t me. This can happen in my arm and hands too. There are visible tremors, especially at night when I am trying to sleep.
I also don’t feel like myself. Feeling just plain sick is part of it. I find it is hard to relate but I feel like I am having an out-of-body experience. People speaking sound like they are in the next room, delayed time and space. I feel confused. There is a sense that my head is floating while my body stays grounded in physical mayhem. The words out of my mouth sound like I am being fed them from off stage. So I can not be held completely responsible for what I say at this point, you all will need to bare with me.
I have enlarged lymph nodes in my neck and the base of my skull that are hard to the touch. They roll around like b-bs and marbles under my skin. The burning pain in my spine and brain is cranking away, like a back beat to the head and neck aches. Chest pain and air-hunger are present and accounted for. The pregnancy-like symptoms that amused me at the clinic have dissipated to simply an over zealous tear response, to say..... hearing the nest of baby robins outside my bedroom window.
Then there are the new gastrointestinal problems that one can only hope are Lyme related (did I just say that?) and not some Indian stow-away from the samosawalla’s stand. My stomach rumbles like a summer thunder storm making its way slowly towards your cringing picnic table. I am pounding the coconut oil and the acidophilus in hopes of resolving this amicably.
I am managing to get out every morning and take my dogs for their walk. It is one thing that forces the head off of the pillow. I usually end up feeling better as a result and it is something I can mark as an accomplishment every day. The temperatures are kinder then they were in Delhi but the bugs are merciless. Thank God we don’t have malaria.
It is common for us to emerge from the forrest with a thick cloud of mosquitos whining around our heads. Michael has gone pro-active and emerged the other day wearing this head-to-toe camo-suit which sent me over in a fit of laughter. It even has a built in feeding shoot. Michael is a bug-a-phobe. You would think I would be with all the ticks and my current state but he has it all over me.
June 18, 2009
The Horowitzes of Hyde Park
Michael and I pried ourselves out of bed at 4:30 a.m to commence the 14 hour roundtrip commute to New York. Dr. Horowitz is my brilliant LLMD (Lyme Literate MD) and his fabulous wife Lee is my everything else.
Dr. Horowitz, much to my surprise has taken me off of one of the antibiotics for Lyme in the hopes that the die-off reaction or Herxheimer I have been experiencing since the last 2 weeks of India might calm down. Clear out the cytokines and every body can go back to bed. The game plan is to treat the symptoms with prescriptions, dextox with homeopathics and then nail the Bartonella as he feels the large lymph nodes in the base of my skull are it’s calling card.
This was our first appointment since India and as I had heard of India and Stem Cell Transplant from Lee I knew we would have a great deal to discuss. Lee and I met before my appointment with Dr. H, giving ourselves 2 hours to process the Lyme and Life relationship. Working with Lee I have come to see that there could very well be a meaning to this madness.
You see, I think I know best. I didn’t understand why the Universe would side line someone who was volunteering and making a difference in the lives of the indigenous women and children of Guatemala, creating lasting change in their financial well being for 15 years of bench time. Surely there had been some mistake? I am a valuable player. You must want the self absorbed, Paris Hiltons of the world. Certainly not me.
So I begged, first just to stay alive long enough to know what was wracking my body and mind in such a manner. Then it became important to prove wrong those who said I was acting out for attention, being lazy, failing to succeed in life.... having a breakdown.
Then 4 years later I have a diagnosis and the hope that lies in knowing there is actually a cure and an end to this, I can have my life back. The one I planned all along. To go back into an indigenous community and make income generating art from renewable resources. Not so fast, as I relapse a year into treatment.....there is anger and defiance snaking their way through, always having their say. I land on my knees and yell, “This can not be what you have in store for the rest of my life!”
So I resort to bargaining ..... if I can just get better I will spend the rest of my life in service to the greater good. This wasn’t such a hard thing to promise as this is where I was happiest all along. Helping others, living on nothing and teaching. I had figured it out, my life’s work. Evidently, unlike India you are not supposed to bargain.
Well certainly hard work, prayers, abstinence of all the vices, antibiotics, healers, raw food, silver, herbs, more healers, more drugs ...... something will make a difference. Hundred of thousands of dollars paid out of pocket. I have applied myself in every modality to my full capacity to finding the root causes and then treat and heal from Lyme and it’s co-infections. I have seen others do it. I have watched it release its hold and slowly fade into the distance of their lives, falling off the radar like some bad high school infatuation.
This is all ego. I know this now. I have a sense of my self worth in the physical and hate to see time and energy wasted.
Enter my work with Lee. I am blessed with her as a guide. A survivalist that has traveled a landscape that resembles my own. She has a pack full of investigative tools to flush out the roots of pain, stagnation and frustration. One implement she uses is a compass of our birth and how the universe is poised when we push on through. This is where part of our conversation went yesterday.
Astrology has always seemed a loose interpretation of the individual in question. As in you know it is a car because it has tires, a boat because it floats. I am amused with the strong presence Leo women have held in my life and all my best male friends, including the one I married, have been Scorpios. I knew I could be mercurial like most card caring Gemini's and how every time someone has done my chart they say, “you are a writer right?” Its fun right? A great parlor trick. Well for the past 6 months Lee has been telling me it is more than that. I have been half listening keeping a frantic pace trying to out run this illness. Trying to out wit its next move and figure out the reason I am not able to clear this off my plate once and for all. She looked at my birth chart and explained that it is all there. The reason this illness is here and its purpose holds in my life.
When I was born Pluto and Uranus occupied the King and Queen seat on the horizon. They are the rip cord into transformation. Pluto takes you deep quickly. Like wake up from a sound sleep one morning with shakes, chills and a panic attack and you are never the same again kind of immediacy. The journey of Pluto takes you down, holds you under until you relinquish the fight and then lets you surface but only when it deems you ready and this is the transformation. Uranus is the planet of surprise and intuition. A lightning strike that sends the circle of life into a spiral. Freedom from the nonessential. Get sick and you figure out very quickly what holds importance.
So it was a one-two punch all going down in my Virgonian first house (the self). Virgo, where my health lies. Fear of loss of control is a guiding force. Virgo’s mighty influence is why I make symptom lists, graphs and charts. It is not that I am obsessed with my disease, it is that I am trying to control it. Chart its course and I might be able to head it off at the pass. I might also have a better idea if my current treatment is working. So here is all this information that Lee had been trying to give me a heads up and all I thought was, sounds great how are we going to treat the Lyme? I would then trudge down the hall to an examination room and Dr. Horowitz would come up with a new game plan and I would leave with a shiny balloon of hope tied to my wrist.
I return this week to Lee’s office from India. The past 3 weeks home I have sat and waited in a resigned way for the results of the stem cells to make themselves known. I am like a gardener holding a quiet vigil over a newly planted seed bed. People ask anything yet? and I look down and pat the soil and say, “not yet but any day now.” The conditions must be right.
Lee’s advise and that of Pluto’s as well is to accept things as they are. In the moment as they exist. Over the past 15 years I have had many visual interpretations of my relationship with this disease. Bracing myself against a door as it is forced open, an endless Rubic’s cube that I can not smash on the garage floor and pop all the loosened pieces back in a color coded order when my frustration level reaches a creshendo. I have had a repeating nightmare, even before I knew the disease by name that has it living as a man within my childhood home. My family likes and enjoys his company but when he has me alone or no one is looking he draws his finger across his throat or tells me he will kill me. I try to tell them that he is going to kill me and no one believes me. I realize that the only way I will be able to stay alive is to convince him that I love him. In my terror I tell him, I love you. I will always love you. I welcome you in my life.
Acceptance. I have always equated this with resignation. If I accept this disease it will roll over me and take my life or worse put me in bed and miserable for the duration of it.
Accept this disease with all its symptoms, life alterations and missions and I will be able to be free from its influence on my true nature.
My Virgonian first house screams, “You will do no such thing! You must not relinquish control. Get to work on the next phase of diagrams and treatments! This is very bad!”
Having Virgo in the house means you are extremely sensitive to your environment. When things are good they are great. Not so good can be the end of the world. It is like the balance board I used in India, it takes a huge amount of concentration to keep it level.
India enriched my life but it also wore me out. Like a colt trying to free itself during the breaking period. Straining against the ropes, against its opposition, eyes wild with fear and defiance. There comes a time where it surrenders, exhausted and it is considered broken. The training can begin and it learns its purpose. Who and how it is to serve in this lifetime.
The transformation I seek is a complete overhaul of the way I operate. I am here doing this work so I can learn to trust that there is a plan, be positive even in times of great suffering and experience peace. Basically, hand over my ego and say, “I am along for the ride how can I be of best service for the common good.”
Where my confusion lies is how does this effect my treatment of the physical ailment? How do you accept an illness and then say take this dose of antibiotic and die! When you are treating Lyme with antibiotics it is an arms race. Who is going to build up faster?
So these are my prayers.
That I can accept what ever this illness has to offer as a great teacher.
I am able to let the door open with trust rather than fear.
I can accept symptomatically the place and time I reside in and thus know peace.
It is what I want for myself.
It is what I want for everyone that suffers.
July 20, 2009
there is more that creeps
among the cells and blood that seeps.
No longer known as a single foe
many have gathered for this army to grow.
where one lets off the other picks up
where one has fallen another shows up.
It has left me thread bare, my stamina wanes
dealing with fever, the aches and the pains.
watching my limbs quiver without a touch
skin burning and tingling and raining as such.
I ask them to come forth, take their farewell.
the virus, the bacteria, the rickettsia and cell
those who envelope and give protection
purge yourself and give them eviction.
They are not welcome nor have they ever been
their life in my body has been of great sin.
I force them to leave with every thought
let go of my hand, a friend I am not.
Leave this body
go on get out.
you are not to live here
and this I shout.
........As you can see I vascillate wildly between eviction and acceptance. The last 2 entries scripted a month apart though they could have easily been a twin birth with one in front of the other by mere minutes. You see with acceptance there is no road map. Like an alchoholic riding the wave of the urge. A symptom comes and you accept it and admit you have no power over it. Ah. yes, chest pain. There you are. And you are just that. Pain. This too shall pass.
Eviction comes up usually when things that have been quiet for a while re-emerge or a new and troubling symptom arises. I hear the party starting and I am the landlord. The tenants are abusing the building and they must leave. God, I wish I could charge spirochetes rent. As they say if I only had a nickle for every....... But I don’t. and the anger has probably kept me alive and fiesty but it has done little to soothe things and make life more pleasent. If you were to ask an Indian what was going on they would say this was my karma. I had done something horrible in a past life or lives (these things can take time to acrue) and thus I am paying it off in this go around. I am not sure where I stand on this......
The recent eviction has been mandated because I have been notified I have a new infection. Rocky Mountain Spotted Fever has been living rent free with her boyfriend Lyme and we have proof. Who knew this could be chronic? This was discovered in my yearly blood letting at Dr. Horowitz’s office. Every tick born illness is given a role call. Erlichia, Q Fever, Babesia, Bartonella, Lyme, Chlamydia, West Nile, Mycoplasma ....... I am sure I am missing a few. These are tests that look for the antibodies, IgGs and IgMs for everybody. Last year Dr. Horowitz looked at these and the viruses that can over run a compromised immune system and said besides my abundant virus load my tick borne illness results were “unimpressive”. Remember that these are looking for a body’s responce to an illness. As horribly sick as I was and getting worse I still tested negative to Lyme and co-infections. For the past 5 years I haven’t been on antibiotics this has been the case. This year was a much different story. Whether it was stem cells finally bringing in the bad guys for a line up or as Dr. Harris said when I start back on the antibiotic protocol I will start to get postive tests again. I was positive for Lyme, Rocky Mountain Spotted Fever, Mycoplasma (the suspect behind Gulf War Illness) and Chlamydia Pnemonia. Plus knowing I have had positive tests for Babesia in the past and the clinical diagnosis of Bartonella due to the large lymph growth while in India I can say I have a full plate. Like I went to the all-you-can-eat buffet at the Tick Borne Palace and I took a little bit of everything. O.K a lot of everything. I am like the pig at the party with the collapsing paper plate.
So how does this change things? My thinking. I have often wondered what was wrong with me that I couldn’t get over this disease. Why have I not found in all my trials a way to subdue this illness into the periferie, like so many I know personally? My thoughts have become less critical and more self supportive in nature. I am living with all this and I am still going. 15 years and I am still exersizing, writing, living as best I can. I am really very proud of my body for having the stregnth and fortitude to not succumb. I see myself as the healthiest ill person I know. And that is a different perspective.
My current protocol is impressive. My “break” from India and medication lasted all of a week and then I was put on Doxyclycline, Hydroxychloroquine, Azithromycin and Mepron for the Babesia. I instantly started to ache in a crippling way. Big bones and joints like femurs and hip joints, shoulders and ribs. The fevers came up and I got the red apple cheeks that many mistake as a rosy glow. My hands, arms, back and legs are experiencing neuropathy that makes it painful to be in hot water and feeling like it is raining constantly. The tremors and cramping has returned too. Michael keeps reminding me that it is much worse when I hit the disease this hard. I try and remember that too.
I suffer and that I believe is the human condition. I picked up a turtle that was in the road the other day. A beautiful painted box that shrunk inside, hissing away at me. I moved him to the side of the road and ran back to climb in my car.
A woman walking said, “You will have good karma for this.”
I was acting out of compassion, to avoid his suffering if he were to get hit. That is a gift this has given me. I am able to have compassion from the depths of suffering.
I answered the woman, “Yes, maybe I can come back as a turtle.”
She gave me a puzzled stare and said, “Oh no, something much better.”
But right then reincarnating as a beautiful painted turtle seemed like a wonderful life.
December 9, 2009
Round Pond, Maine
Dear Friends and Family,
I have reached the 6 month mark of my return from India and stem cell therapy. I have been purposefully quiet on my progress because I didn’t want to let any frustrations or judgements, I might have curb my progress.
Where the mind leads, the body will follow.
India and her people were wonderful. I loved that spirituality existed openly and with a deep heart. The clinic is top rate by most developing world standards. The sisters (nurses) and the physical therapy staff were exceptional and truly compassionate. If I had any disappointment it would be with the staff doctors not knowing about Lyme and co-infections and ways to deal with the complications that arise. The director, Dr. Shroff and Dr. Ashish, the anesthesiologist were very professional and kind.
I saw many miracles there. A young boy with Cerebral Palsy was able to walk and talk after 4 months of treatment. A woman who had been a quadriplegic was able to move her arm and feed herself, draw portraits, stand in calipers and take 31 steps in the bars after not being out of her chair in 18 years. I saw the hard work that goes into making miracles happen. A woman with ALS was able to speak the word “water” and swallow after months of decline. A man with diabetes was able to stop all his medicine. I celebrated with these people on a daily basis, bolstered by their courage. My definition of miracles now includes any movement towards a better quality of life.
I worked very hard. Yoga class and physical therapy twice a day, some days I took 2 yoga classes, relishing in the pain free way my body started to move and the strength felt in my legs once again. One of the Lyme patients who returned for her second round of treatment after I had left teased that the physical therapy instructors pushed her even harder this time chiding, “Hazel did this, so you can too.”
I also saw patients with neuro disease, Lyme, M.S, and spinal injuries who didn’t feel much of any effect. I listened to their tears through the walls and watched the disappointment in their parent’s faces. This process is experimental and not even Dr. Shroff knows why some get better and some do not.
I think I fall somewhere in between, like many I met. I improved significantly and steadily until week seven of my stay and the second spinal procedure, where because they enter the spine IV antibiotics must be given. This had the effect of stepping on a hive of bees. The Lyme flared horribly and for a time my progress slid back into bed. The stem cells were not to cure me of Lyme but to repair the damage caused by the illness itself. The tricky part of dealing with Lyme is often you can become much worse when there is a stressor or an additional drug added. You simply don’t know the tipping point until you have crossed it.
I am able to see, six months later, my situation in a more positive light than I did when I
returned from New Delhi. One of my many blessings is my husband Michael’s eternal optimism. We spoke at length the other night about the physical benefits I have reaped from stem-cell therapy.
I believe stem cell has helped me in these ways:
It has bolstered up my immune system enough so that I now test positive for the diseases. For the last 5 years I have not had a positive Lyme or co-infection test because my immune system was not producing antibodies to the disease state. It was that suppressed.
We now see that along with Lyme I have a host of other co-infections; Rocky Mountain Spotted Fever, Babesia, Bartonella, Chlamydia Pneumonia and Mycoplasma are some of the infections I am testing positive for. It is as if the stem cells brought the culprits in for a lineup and my body was able to identify them as the perpetrators they are. When these tests came back positive in June at my Lyme doctor’s yearly blood letting, it completely changed my outlook. Rather than berating my body for not getting better I am appreciative and in awe that it’s doing its best under such a roster of thugs. I am the healthiest sick person I know. My doctor is now able to treat me with drugs that address these diseases in a more focused way.
This brings me to the second gift of stem cells. I am able to treat aggressively with antibiotics and anti-virals which before would have caused allergic reactions and a laundry list of unwanted side effects that had really kept my doctor’s hands tied. For the previous 4 years I was unable to take antibiotics at all.
I am now treating and tolerating the treatment.
I was also given good news at the clinic. Dr. Shroff had a second SPECT scan run on my brain just before I left for home and two out of the six legions have completely disappeared.
I am treating these diseases aggressively and continuing to exercise, follow a strict anti-inflammatory diet and be outside as much as I can. I had a phone appointment with my doctor today and he said that with all our history together this is the first time he sees “the sun coming through the clouds” with me and he is greatly encouraged by my progress. I hold these moments in the cycle with awe and relief mesmerizing every nuance of what health and normalcy feel like. I have been able to read like my voracious self again. I have days where I think clearly and feel as if once again I am inhabiting my body. My legs are strong and carry me hiking for miles where before walking up the stairs was exhausting. My doctor would like me to continue to address Lyme and the co-infections aggressively before I attempt to have stem cell again. I am going to heed his advice and wait until I am in a place of stability before returning to India. He also reminded me that my road to better health is a marathon not a sprint and right now I am able to set a good pace.
I have been given many gifts through this experience. Friendship, generosity, support, kindnesses, adventure and love. It has created a great sense of inner peace and gratitude knowing that when we asked for help our friends, families and even generous strangers stepped in and offered help. It created a safe space for me to heal, knowing the world held me. I truly feel this and I am deeply grateful for your contribution to my health how ever you chose to make it. Thank you so very much.
May you be blessed.
May you be well.
In India red strings are wrapped around your wrists as a form of blessing and to protect the recipient from harm.
My therapist, Rajni tied one around my left wrist and gave me a blessing.
This is a painting I did of my left hand.
The bracelet lasted for 6 months and 3 days but my blessings continue.
...... For all those wondering how the Indian street dog, Sheru has adjusted to his new home-
He absolutely loves it.
He is exquisitely happy.
....... Though, his Maine adventures could be a blog in themselves.