Elaine In India

It is time to leave again, back home to the states.  Dr. Geeta says she hopes I return for a visit, and by visit she means just to play, not for treatment. She wants me to spend a year living my life and free from the Lyme centered one I have lived in these past years.  I do believe I am getting better and have seen vast improvements but I still have a ways to go.  I read with ease, I am able to write and remember.  I have my short-term memory back. My speech is back and I say exactly what I want to say and more.  I have more energy and am getting my independence back too.  It is true though that, much of my further recovery is up to me, continuing physical therapy and doing things that exercise my brain as well getting out in the world.  There is still that little part of me that says not just yet.  It hasn’t even been a year that I have felt this well, let alone six months and I was sick for so long, seven years.  That part of me knows healing takes time.

I see don’t speak too soon written all over my mom’s face when she hears Dr. Geeta say visit with such confidence.  My mom too is unsure.  I am her baby and she wants to be sure, absolutely sure.  Lyme has so many ups and downs with lots of trick up its sleeve.  And she knows as well as I that the ultimate test is if I can return to school and stay healthy.  School has been where I crash the hardest.  I over do it, I am learning not to.   But I push myself, and when I push my body stresses and my health declines.  It is a cycle I have dealt with since I started getting sick.  There is just something inside that drives me and it took my doctor telling me that I would only keep getting sicker if I didn’t stop school for me to see.  With clearance I have tried several times to attend school over the years but I just didn’t have the health.  Now I do, and that is where I will see just how healthy, well, and truly recovered I really am.

I am on the road though, the road to recovery this much I know.   As I leave India I am as equally divided, as I was when this third trip began.  I miss my family and friends, and pets back home.  But I have an Indian family and friends here too.  A piece of my heart always stays here in India when I leave.  India is the place of my rebirth of sorts.  I feel I have been given such a gift, there are no words to describe, just look at me, the smile on my face says it all.  I gave a present to Dr. Geeta and the hospital too.  Nothing is as great a gift as the one I received here, though my present is what the stem cells restored to me, my heart and my soul, and my freedom of expression.

My very first trip I made a promise to Dr. Geeta.  She had heard I had a passion for art and had enjoyed painting, though I hadn’t been able to paint in some time. Dr. Geeta told me she wanted me to paint something for the hospital during my visit and she would hang it up on the wall.  I used to feel an ease with painting that had gone as the Lyme crept into my brain.  Mixing colors was so hard.  I would spend so much time mixing that the paint would dry before I could use it.  And then there were the tremors in my hands, I couldn’t make straight lines and it was so hard to even hold the brush.  I was too sick to paint that first visit.  In fact I couldn’t paint my second visit either.  This third trip though was the difference. One day, when I was out at a market with my mom, we found an art shop.  I got brushes, paints, and a big canvas.  In between physio sessions or in the afternoon when it was too hot to go out, I would sit in bed and paint.  For the first time in years it came with ease and felt like the brush was an extension of me.  I kept my painting a secret.  The sisters saw it only after my last procedure when I worked on it while lying in bed, that was it.  I showed Dr. Geeta my unfinished painting this last day. I wanted to see her face when she saw it.  Shock, surprise and a big smile ran across her face. I think she thought I had forgotten. I did well, Dr. Geeta had not heard any rumblings of my painting, a pleasant surprise.  After that I went right back to my room to paint, I had only a few hours before the flight.  I was determined. I was not leaving without finishing this painting!  I did finish and left it on Dr. Geeta’s desk. I said my goodbyes.  Before we rushed off to the airport, one of the doctors took a picture of me holding my painting.  A red dahlia, from a picture I took on a walk with my dog, one day back in California.  The bright color made me smile.  My promise I kept.

Sometimes you don’t know what you’ve lost until it returns.

I was in the car, a new car not the normal old ambulance that was my usual ride to a Spect Scan here in India.  My mind wondered.  It could.  A feeling of curiosity got the better of me.  What had changed in my brain over the past year?  What did the stem cells do on their own?   I was feeling good and healthier than all the previous Spect scans combined but lyme is a roller-coaster ride.  Was there really a change, healing in my brain?

We had left behind the parts for the city I knew or recognized.  A hospital, Fort Hospital, some place new for this Spect scan. I still do not know why. However, that was not important at the time.  I had been waiting for this Spect scan for months now. Back home the insurance company, the one that paid for my first Spect scan no questions asked, was trying to weasel out of paying again.  They paid for one, a year into illness, and one would think they would have no problem paying for another, years later, to check for improvement.  Nope.  Instead, they insisted on a second opinion, at Stanford nonetheless.  A waste of my time, energy and it would definitely cost them more money.  My father is still telling them this in the appeal, out of principle and in hopes, it will help the next person.  After all, India was already in the works and a Spect scan here is the same quality as the US and much more affordable.

None of this matters now though as I focus on just breathing one breath at a time, clearing my mind, only happy healthy thoughts.  The man sang while putting in the I.V., smiling as he worked.  He took good care, a former military man from the state neighboring the sisters’.  It was a quiet room.  The lights were turned off and the tracer injected.  To my surprise, the lights stayed off and all was relatively quiet. 

The scan went smooth. I didn’t move.  Bang! The doors were thrown open, some jabbering in Hindi and the lights turned on but still I lay there.  Unsure whether the test was over, knowing from previous tests in India, to stay still until you are told otherwise.  A sharp voice, “get up now,” not loud just stern with intent. I moved off the table and waited.  The doctor said it wouldn’t be long.   Unlike back home, the test here was processed and read within an hour.  Next I saw the doctor, a smile of amazement across her face.  “Very good and almost normal just one spot left.”  We were handed the reports.  There was another lady there with two children.  “She too is being treated with Dr. Geeta Shroff’s stem cells,” said the doctor with a nod toward me.  The little boy pulled at his second I.V. as we talked.  Explaining to his mother, “give it time, the stem cells work, just give it time, and stay positive”.  We continued to talk as we walked out.  “Are you married?”  She said “Is she married?”  The lady then turned to my mom, such an Indian question to ask.  I always want to say I’m only 19, but to them that is not too young to think about.  We said our goodbyes and thank yous.  The ride back to the hospital was a crazy one.  Not even the sight of a bad crash slowed this driver. 

Back at the Nutech, Dr. Geeta greeted me so quickly there was no time to sign back in.  After a hug, she immediately spread the reports from all of my sect scans across her desk.  5 circle, 3 circle, 3 circle “but with change” she says as she circled the number of spots with decreased profusion found on each scan, 1 circle.  “Look at this, one minimal spot left.  Wow!”  Looking at the tests and the circles Dr. Geeta was drawing I could remember the feeling I had during each one.  A numb feeling the first two times just trying to get through yet another test. The third and forth scans I just tried my best to breath and be in a good place though still numb emotionally. Again trying to get through the test tentatively optimistic but still knowing the long road still lay ahead.  This time was different, with a clear brain it was much easier to be present and focused for the test.  I had regained a confidence not only in myself but also in that there has been a change, a good one, a big one.  “Get the doctor on the phone, I want to just check with her.  Just minimal” she said questioningly into the phone.  “Wow! She says there is something so she had to put it on the report but minimal and everything else looks normal.”  Remembering as Dr. Geeta told me this… I can read, I can write, I can remember, I can listen, I can talk, I can laugh and smile, I can articulate, comprehend, enjoy, and I CAN.  An improvement, my quiet confidence is back and building.  Still I believe I have a road ahead but I’m on the right one, a bright one.

Waiting I fell asleep. The combination of acupressure, done by my mom, and breathing did the trick. As relaxed as I was it was a nervous sleep. Questions… pictures… needles whirled in my head. It was a procedure day, my first of this trip and much had changed. A caudal procedure, the one that was scheduled this day, is low toward the tailbone area, an injection of two syringes of stem cells.

My body remembered the feeling of the previous caudal procedures I had had. My back remembered the spot and twitched. Between my second and third visits, feeling and sensation returned that I never knew I had lost. I mostly noticed in my hands and feet also my back was included. During my last visit, I was in constant pain, however now most days my pain was completely gone. I was unsure how or if any of these changes would affect the way my body would react to the procedures. My pain tolerance had always been high. Even though I had been through this procedure several times before, I’ll admit I was nervous and a bit scared. Caudals were the hardest on my body but I had a good feeling about this one.

On the table in the Green Park OT, the OT staff chatted to me. It was my first time in this OT, previously procedures were done at the other hospital. All the nurses were the same so I was comfortable as we joked. There is something to be said for knowing the people who are in the OT with you. Even if you are nervous or scared, it’s comforting to see familiar faces even if they are wielding needles. It was a few days before Diwali and everyone was excited for the festival of lights. Dr. Ashish was prepared with his list of questions. The caudal procedure targets the lower body and that was his plan. Dr. Ashish felt around my lower back and tailbone area. He picked a spot and cleaned the area. He was describing the festival and the different rituals. “Okay I’m doing the injection now,” he said. I held as still as I could telling my body not to react, as much as it wanted too. The feeling of pressure more than pain began to flood my lower back and moved down into my legs as the local anesthetic was injected. Not a comfortable feeling, as my lower back and legs went numb. My body was sending panic signals that I fought off. Dr. Ashish was back to our conversation about Diwali. “Did you get crackers?” He asked referring to the firecrackers that would soon overwhelm the city. “No… they are a little dangerous,” I replied, “I’ll leave that to the pyros at the hospital and the neighbor and the kiwi’s this year.” I said laughing. I had totally forgotten about being nervous or scared, although I could feel a pinch every time he touched my back for the injection. The one drawback of our conversation was I’m laying on my stomach on a table that’s bent in the middle so my back was curved. My head was lower than my feet so it feels like I’m falling off the table. Nurses are holding me at my feet and back so I can’t move. Dr. Ashish was making me laugh so I was moving a little bit when he says, “Okay another injection.” I haven’t quiet finished laughing when I feel another pinch. Good thing Dr. Ashish is used to patients moving on the table because I don’t like the idea of moving when there is a needle in me. Another pinch.

I felt something being put on my back then Dr. Ashish says “all done, good job.” I was taken back to my room. Bricks, two of them, were put under each foot of my bed to elevate my feet and I was left to lie on my back for the next 4 hours. To my surprise when I rose, my back was not as sore as I expected. I decided after my first procedure that any discomfort, pain, bruising, or soreness that came with it were well worth the improvements I got from the stem cells getting the direct route to the damaged areas. So the soreness and bruises I got every time after were welcome. However after removing the bandage this time neither my mom or I could find a bruise at the site there was barely a mark.

Something new happens right after each time I get a procedure. Little, big, or unexpected it doesn’t matter but it’s very welcome. Was it just a good procedure, had Dr. Ashish just found the right place or was my body really healed to the point it no longer over reacted? My next procedure is in a week, I’ll have to wait till then.