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SILVER'S STORY IN HER OWN WORDS

Posted Jun 18 2009 1:51pm
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In July of 2002, Silver suddenly became very ill with a myriad of symptoms: excruciating headache, joint pain, nausea, fatigue, etc.  The many doctors we took her couldn't figure it out and all said there were "too many symptoms" -- meaning they were clueless.  Getting her correctly diagnosed was a long and expensive nightmare.  Here is a partial account written by Silver herself.  She was 13 when she wrote this.

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The Story of My Infested Body

A Toxic Monologue

By Silver Feldman

I have always had a love for the East.  I've always wanted to visit New England, shop in New York City, go to school at NYU or Columbia...

For Christmas 2002 I really wanted a pea coat. So I picked out the one I wanted at Nordstroms Rack and Santa brought it to me.

Actually, I wasn't expecting to use my pea coat for a long time... did I mention that I was sick?  Not a cold or sore throat or earache sick, but a plentiful kind of sick -- throwing up, migraine headaches, body tremors, cold sweats, high temperatures, low temperatures, abdominal pains, breathing problems, weakness, arthritis, tingling, numb body parts, hair loss (but not THAT much!), and 24/7 tiredness, just to name most of them. 

You know, the everyday things that didn't used to be everyday.  I swear to you, I didn't used to be like this.

But the doctors are telling my parents that I need to see a psychiatrist, because they can't find anything wrong with me.  My blood is sooo clean and normal. Oh wait!  They figured that out because I've donated about 70 vials of  blood and counting --in the last nine months, minimum. And no, they can't find a diddly thing wrong with me, so there must not be anything wrong, right? Wrong!  There IS something very wrong and somebody needs to figure it out!   

But the Doctors Stone, Potts, Pascal, Yarmalke, Steinberg, Marshall, Hansen, Singh, and some other guys they all told me the same thing: There's nothing wrong with you. I've memorized those words.  I don't think anyone has heard that more than me.

There's NOTHING wrong with you!

There's nothing WRONG with you!

There's nothing wrong WITH you!

There's nothing wrong with YOU!

Like heck there isn't. 

Listen, guys, starting last July, months ago, I got sick.  And I've been sick for too long.  And its your job to figure out what's wrong with me-- that's why my parents pay you -- not to tell me I'm crazy!

My parents were frustrated and decided to take matters into their own hands because the doctors were of little help.  Kaiser did the best they were capable of, which is maybe OK when you're bleeding or broken or having a baby, but for anything else, I suggest that a shaman or a witch doctor or a new pet will make you feel better years before they do.

So after long and painful days, and lots of research, my parents came to a conclusion: it was carbon monoxide poisoning.  As brilliant as they may be, and as much fun having that diagnosis is, they were entirely wrong.  Yes, there was a leak from our water heater, but no, it wasn't until Mom and I were on the other side of the country that we learned from Dad that if we stood on a street corner in New York City, we'd breathe more CO than in our basement. 

So now I was an undiagnosed drifter.

See, we had come to New England, to the New England Hyperbaric Center in the Berkshires, in Great Barrington, Massachusetts and I was going to be treated with hyperbaric oxygen, not that I knew what that was.  It sounded cool, though.

          

Our flight east was booked on a flight called ATA, American Trans Airlines. The first flight, to Chicago, was boring. As we were about to land, the stewardess talked over the loudspeaker to tell people where their next flight would be departing. We were arriving in Gate A2, late, and we had to get to Gate B5 in ten minutes. Midway airport is a big place. So we ran to the gate carrying about thirty-five pounds worth of stuff each and we finally reached our destination and looked on their light-up screen and it said our flight was departing from Gate A2! We go running back the other way, we finally make it to the other wing of the airport in two minutes. We board, and my Mom and I were almost the last people in. Even so, we wait and wait, and find out that the luggage boys had been told to go to gate B5 with our bags, and now they were coming back. A half hour later we finally take off.  I amused myself with watching episodes of Fraiser and West Wing they were so kind to show us and I tried to get comfortable in the really small and hard seats.  My butt hurt.

We landed at Logan airport at approximately 10:30pm and we were prepared to get our luggage and leave. As we are walking out of the gate we notice one of our crew standing there holding down a big cartoony red "By-Pass Button" to let us through the door. We walked through the corridor and were about to walk through the area where people go through for Immigration. Immigration?? Two guys jumped out of the blue with guns, and ordered us back behind the line. We recognized their uniform as being Immigration officers.  One of them wouldn't let us pass through the doors while the other one talked to the attendant who was holding down the By Pass button.  The button-pusher was finally convinced that he should let go of the button, and when he did, an alarm went off and we heard over the loudspeaker that "The fire department has now left the station and they will be here in a minute. You can stay or leave."  Then they said the very same thing in seventy other languages.  We were all holding our ears and yes, we would like to leave but there's the problem of the guys with the guns.

Well eventually we got our luggage and ran away.  Mom and I figured out that ATA stands for A Terrible Airline. 

We stayed overnight at the Logan Hilton, about which there is nothing to say other than it looks like a hotel and smells funny and for some reason my butt hurt in their stupid bed.  We got a rental car, a small SUV.  We drove and drove, and I have to say that I just felt terrible with the usual symptoms.  We finally got to our rental condo.

The next morning we drove to the Hyperbaric Center.  It is at the doctor's house, and I am not kidding the driveway is a half mile long, and since it was snowy and a dirt road, it was a real experience getting up the road.  Mom did OK for a California girl.

The doctor was glad to see us and she introduced me to Sean and Alice, who work there.  I had no idea when I met Sean that I would spend so much time torturing him and that it would make me feel so good.  I saw the tank, which is about 17 feet long and steel and blue.  I got to go check out the inside of it, which is pretty cool, like a rocket ship or something.  That day I didn't get to go diving.  They had to do a brain map first.  I doubt that the map will lead to buried treasure!

My Mom asked Dr. Jamie if she would look at my sore butt.  It was starting to give me great pain.

The brain map is called a qEEG.  Little q big EEG.  Why is it a little q and not a big Q?  I don't know. They put a rubbery bathing cap on you, there's all these colored wires coming out of it, and they stick you in 19 places on your head.  It is a real strange-looking thing, and I am so glad that there are no pictures of me all wired up.  You sit in a smooshy chair and don't do anything while your brain just sits in your head and sends messages to a computer.  Then the doctor looks at it and tells your parents if you're brain damaged.  As if they can't tell.

Well my brain was pretty good, the doctor said.  Normal.  I don't know how you can have a head that hurts like mine and call that normal.  But my butt was not normal, not that they wired it up. All they had to do was look.  Dr. Jamie said I had a pylinidal cyst, or in other terms, a butt boil.  Jamie said in three days it would be ready for lancing.  Nice.

Anyway, the next day I did my first hyperbaric  dive.  I had not seen a hyperbaric chamber before yesterday.  I originally thought you went into a room and oxygen came through.  Wrong.  It kind of looks like a blue submarine from the outside, with benches on the inside, and all the knobs and switches on the outside.  When you go in, you go in with a tender and the other divers.  You sit down and they close the steel doors, which are big and round and thick, so if you are claustrophobic, this is really not the place to be.  They shut the doors and you hear this really loud sucking noise as they begin to lower you. The pressure they take you down to first is the equivalent of two feet underwater.  They stop there to make sure everyone is able to clear their ears, and then they take you down to treatment depth.  It was a little scary the first time I did it.

I didn't expect to hear the loud noises of pressuring.  It's quite loud.  Imagine diving down into a swimming pool, your ears stop up and you have to constantly be popping your ears on the way down.  At depth, you put on your neck dam.  And dam is a good name for it.  Its a huge rubber gasket which has a circle cut out to fit your neck just a bit too tight, and that fits into a plastic ring that accommodates something that looks like a clear plastic bag, only heavier that doesn't say Ralphs on it.  You bag your head in.  Oxygen tubes are attached to the underside of the neck dam, and they turn on a switch, and the 100% oxygen feeds your head.  It just seems like air.

So what do you do while you're being a wastebasket head?  Well, you can entertain yourself in a HBOT chamber by: a) reading, b) playing cards, c) talking, d) harassing the tender if they'll harass you back, e) watching a movie,  and f) if you figure out something else, let me know.

I was on the brain dives because of the carbon monoxide.   After a couple of days, it was time to deal with my sore butt.  Jamie looked at it and said to go to the emergency room.  I'm going to preserve my dignity about this procedure, but let me say that the steel handles on the hospital gurney bed are now bent, and they weren't before I got there. 

In between my two brain dives, there was a dive for the Lymies, the Lyme disease patients.  It included a nice young man named Tom from Maine who had been suffering from Lyme for six years, a Connecticut Mom named Dina who had Lyme for 17 years, and Nellie from Massachusetts, who had been sick for 12 years. 

Nellie took interest in me.  We became friends.  After watching me for about a month, Nellie came to the conclusion that I did not have carbon monoxide poisoning.  One evening as we were over for dinner at Nellie's, I was playing cards at the kitchen table with my Mom, while my Dad was talking to Nellie and her husband Ed Flower in the other end of the kitchen.  All of a sudden I wasn't feeling well so I walked over to my Dad, and when I got to him, for some reason I couldn't hold myself up anymore, and I started to crumble.  Worse than that, I couldn't talk.  Dad caught me.  Being unable to talk is pretty scary. 

All I can say is that my normal brain just stalled and I couldn't get the words to come out of my mouth.  I felt that I was slipping away.  It's kind of like being locked up inside of yourself and not caring about yourself and what's around you.  You can see and hear other people, but you can't focus.  Mom and Dad and Ed and Nellie took me outside into the snow where I cooled down, and they took my temperature.  I had a fever.  They rocked me back and forth, and when I began to shiver from the cold, we came back inside. 

Nellie said to get me into the bathroom and then she leaned me over the sink and pounded on my back like I was a drum.  She did this to make me cough.  And finally my cough came.  I started to spit up foamy saliva for about a half an hour.  And all through this I was ready to give up any minute.  If I gave up, I knew I would pass out.  My eyes would start to roll into the back of my head, and I would hear people saying to me, no, no, don't give up.  Come back.   I think that not giving up was one of the hardest things I've ever had to do in my life.  I didn't think I was going to die, but I was terrified and in a state of really not caring.  Nellie kept pounding on my back to bring up more mucus and after a while I started to feel better.  Finally, I could talk again, and I could be present.  It was over.  We had dinner.

You know that expression, zipping your lips?  I think of it differently than I used to.  To me it means being unable to be there, to speak.  My lips were zipped and it was awful. 

Nellie told my parents that she thought I had Lyme.  She had recognized what I had been going through.  Tha'ts why she knew what to do-- it had happened to her.  My parents took some of the books that Nellie had on Lyme and began to think about it.  The next morning my Dad went back to Nellie's and talked to her about Lyme. My parents discussed it with Jamie and she helped us get an appointment to see a Lyme specialist. 

We saw Dr. Liegner in Armonk, New York, a week later.  Silly me, I was expecting to have a consultation and couple of vials of blood taken.  Wrong!  I had 11!  That brought my Vial Count up to about 80. 

Then I was examined from head to toe, side to side, and up one side and down the other.  He poked my body in a lot of different places looking for tender points, and boy did he find them! He told me that I was a big ball of pain.  Hey, why don't you tell me something I don't already know, Dr. Liegner!  I've been telling everybody this for ten months.

Then, Dr. Liegner said that I was suspicious for tick-borne illness. 

So where and when could I have gotten a tick bite?  We didn't think there was much chance in our backyard or around La Canada.  Then we remembered that I went on a junior high school biology field trip to the Headlands Institute in Marin County a year ago February!  The park rangers warned us about ticks there.   And then we marched around in high grasses and we sat on the ground and ate lunch for four or five days.  The rangers and our teachers did not have us do body checks for ticks, which I now know ranks real high on the Must Do chart when you are in tick territory, which basically is the entire United States, in case you don't know.  Dr. Liegner said that was highly suspicious and ordered an extra vial of blood because there is a tick disease up there called WA-1 that he wanted to test for.

After Dr. Liegner drained me of most of my blood, we went out to lunch, and if you are ever in Armonk, New York, go to Broadway  Pizza.  There is nothing like New York pizza.  Just talking about it is making me hungry.

So in a couple of weeks the blood test results began to trickle in.  It's complicated, but I came back positive not only for Lyme but for Bartonella as well.  Bartonella is cat-scratch fever but it is carried by ticks.  Now I have two diseases.  We are getting our money's worth, huh?

I've dived 71 times now-- and counting -- five weeks of it being the deep dives for Lyme.  I'm on major antibiotics.  Do I feel better?   Well yes, and no. 

Yes, because I couldn't have written this before because I hurt so much.  I couldn't concentrate.  My head and eyes hurt so much, all the time. I was in a New England fog.  Now I am more present, although my headache is still big-time. 

And no, I am still extremely fatigued. It's hard to focus.  It's hard to generate clear intelligent thoughts.  I can feel sort of ok, and in ten minutes I am a wreck.  I never know.  I miss my friends and my dogs and my Dad.   

Personally, I find it disturbing to know that there are little critters crawling about in my organs, tissues, brain, and blood and reproducing and having gazillions of offspring.  But on the other hand, I am clearly delicious.  I am the feast.  The hostess.  And as exciting as that is, I try to block it out.  There are many things to block out these days. 

You know, I always wanted to be a producer, and if I stop to think about it, I am, I really am!  It's not quite what I had in mind, but on the Silver Channel this season weve a great line-up of shows:

Whose Spirokete is it Anyway?  (Whose Line is it Anyway?)

Buffy the Tick Slayer  ( Buffy the Vampire Slayer)

60 Ticks  ( 60 Minutes)

Tickville  (Smallville)

The Keet is Right  ( The Price is Right)

T*I*C*K*S  (M*A*S*H)

So if you ever ask me how I'm feeling, bear in mind no matter what I tell you, I'm infested.  I'm tired, I hurt, I may throw up at any moment, things go blurry on me, and I can't remember anything.  So when I answer with a smile and say I'm fine, you know that my definition of "fine" is way different than yours.  If nothing else, I have learned to lower my standards.

But if you truly are nice to me, I mean really nice, I just might show you the hatchet the little buggers have buried in my head!
 

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