until 1998, I considered myself a very healthy person.
All that changed when, in May of 1999, I was diagnosed
with Polymyositis and Raynaud's Phenomenon and, in March
of 2001, with Pulmonary Fibrosis.
My Web site is called "Lenor's Journey"
because that's exactly what it's been, a journey! Along
the way I've learned a great deal about myself, my inner
strength, my determination, and my fears. I've met some
extraordinary people that have gone above and beyond
the call of duty, and I've also been hurt by people
I counted on. I decided to create this Web site for
my friends and family and for the others who have one
or more of these diseases. I want to share my experience
to let others know, as I do, they are not the only ones
dealing with this. My goal is to retire at 65 with both
lungs intact and collect my 401K.
So, welcome to my site and thank you for
joining me on my journey for a
healthy spirit and most of all a fulfilled and long
grew up in the Napa Valley and moved to New York City
at the age of 25. I know what you’re thinking,
“Why would anyone do that?”. I am one of
the few people that move to the East Coast and love
it. I fell in love with the changes of the seasons,
the people and the pace. I am what you call a Type A
personality… I love to work and play hard. I made
the conscious decision early on in life that I wasn’t
going to have children and wanted to be a career person,
so I put everything I had into it.
Before I got sick, I considered myself
an active person. It was not uncommon for me to mountain
bike, rock climb and go to the gym all in the same day.
I also considered myself a healthy person. I’ve
been a vegetarian for most of my life. I’ve never
done drugs, smoked anything and I’m not a big
At 34 I saved enough money to buy a house
in Fairfield County, Connecticut. That in itself was
a huge accomplishment for me. My little 1,500 square
foot house sits on two acres of land that backs up to
a wooded nature preserve complete with deer and other
wildlife. I could mountain bike and rock climb right
in my own back yard. It was a dream come true.
In my first six months as a homeowner,
I worked on the house night and day, ripping out and
painting walls and doing a lot of yard work. At the
same time, I worked harder than I had ever worked before.
Each month, I commuted back and forth from Connecticut
to California for a week at a time. Needless to say,
it was a time of great stress as I was burning the candle
at both ends.
Some time in September of 1998, my hands
and neck became very stiff. I thought it was due to
yard work so, of course, I ignored it. Weeks went by
and my condition wasn’t getting any better so
I went to my chiropractor in order to work out these
kinks She told me I should be tested for Lyme Disease.
Even though I never saw any evidence of a tick bite,
this made sense to me since I had been outside doing
lots of yard work and Connecticut is an area where there
have been many occurrences of the disease. I had my
MD test me for Lyme and he put me on antibiotics that
day. The test results came back positive negative, which
means in plain English, that the test results were inclusive.
I was starting to feel worse and found it hard to sit
down and walking up stairs was impossible.
In October I went to see a doctor that
specialized in the disease. He began my treatment by
ruling out what I didn’t have. The first disease
to eliminate from the list of possibilities was Meningitis.
So on Christmas Eve 1998, I went in for a spinal tap.
It came back negative, good news, no Meningitis! The
next step was to send me to a Rheumatist to rule out
any disorders in that field. My story might have been
very different had this doctor not missed the Polymyositis.
He concurred with the diagnosis of my other doctors
and sent me on my way. My liver tests continued to be
elevated about three times the norm. Even though all
of my tests came back as positive negative, or inconclusive,
the only thing they could come up with was Lyme Disease.
In February of 1999, the doctors put me on IV Rocephin
for nine weeks with the hopes that this treatment would
be effective as all other antibiotics had failed. After
the ninth week, I still wasn’t any better. I found
it hard to breathe, to swallow and walking was almost
impossible. I needed help getting to the bathroom and
All the while, I continued to work. When
I traveled, I checked into handicapped rooms and asked
for wheelchair assistance at airports. I felt so bad
and cried all the time and believe me when I say that
I am not a crier. My whole body hurt. I felt like a
ninety year old person had taken over my body and I
was only 36. I just kept thinking “I have to keep
going or I’ll lose everything I worked so hard
I continued to search for answers for
my condition and on May 21, 1999 I went to see a liver
specialist at Yale University School of Medicine. He
asked me if I had ever been tested for HIV. My first
thought was, “Great, I have AIDS. How am I going
to get through this?”. My answer was no. He admitted
me to the hospital that day for testing. My HIV test
came back negative, however my CPK’s were 11,200
(Normal is between 55 and 127). It was at this time
that I was diagnosed with Polymyositis. I never had
Lyme Disease. They confirmed the Polymyositis with a
muscle biopsy on May 24th. I was so happy that they
had finally diagnosed the problem. I’m going to
live! Polymyositis isn’t life threatening unless
there’s lung involvement, and I didn’t have
that! I was released from the hospital on May 25th taking
60mg of Prednisone
per day. I was on the road to recovery, or so I thought…
I found a new Rheumatist and started treatment
for Polymyositis. He started me on Methotrexate.
My CPK’s levels went up and down over the next
2 years and I developed Raynaud’s Phenomenon (Raynaud's
Phenomenon is a disorder that affects the blood vessels
in the fingers, toes, ears, and nose. When I get cold
my fingers and toes turn white and then black. Raynaud's
Phenomenon can occur on its own, or it can be secondary
to another condition such as Polymyositis). My dry cough
came back some time in February of 2001 but I adjusted
to my new life. I couldn’t do everything I had
done before I got sick – my mountain biking and
rock climbing days were definitely over - but I was
grateful I wasn’t in any pain. I was able to move
around some – more like an old lady than a 37
year old but I was okay with that.
On March 3, 2001 my world came to a halt
when my doctors discovered I had developed Pulmonary
Fibrosis while on the Methotrexate treatment for Polymyositis.
Pulmonary Fibrosis is a lung disease with pronounced
honeycombing at the base of each lung, My Rheumatist
sent me to a Pulmonologist and he confirmed the disease.
He told me I had to treat my health like my second career.
Great, like I didn’t have enough to deal with
already. I didn’t want my health to be my second
career. I just wanted to wake up and feel good and now
I knew that that was never going to happen.
went home and looked up Pulmonary Fibrosis and what
I discovered wasn’t good. Everything I found came
up the same – prognosis: three to five years maybe
four to six years and lung transplants. I felt like
I had just been given a prison term with no hope for
parole. Down I went, depression all the way. So they
to my already quite long prescription list. Zoloft is
an antidepressant medication. And they changed my drug
from Methotrexate to Imuran.
Imuran is less toxic on the lungs. As if that weren’t
enough, in November of 2001 I ended my six and a half
year relationship with my boyfriend. So much for that
support! Needless to say, December was tough, but I
love a good challenge.
So I reviewed my life. Let’s see….
I have an autoimmune disease I can’t control,
I’ve been diagnosed with a terminal lung disease,
my boyfriend is no longer in the picture and I’ve
gained 30 pounds from the Prednisone.
(Can you believe the 30lb weight gain is what upset
me the most? I think you have to be a woman to understand
this one). What should I do? Where should I start? What
does a normal 39-year-old woman do when she’s
depressed and fat?
had saved a bunch of money over the years and since
the stock market wasn’t doing anything with it,
I thought I should do a little investing of my own.
I repainted the inside of my house. I bought a new bedroom
and dining room set. I installed a sauna and a surround
sound entertainment system in the loft above my garage.
Oh yes, and a new boat! A 26-foot Chris Craft. I used
to sail, however now I didn’t think I would have
the strength to sail, so a powerboat it was. My thought
was, if I can’t fix my health then I’d fix
my house and have fun- more female logic!
In February 2002, the Imuran wasn’t
working and I was scared something else was going to
go wrong, so I pushed the doctors for something new.
They put me on IVIg.
On March 12, 2002 I received my first treatment. I started
to feel better and over time my CPK’s went down
to 267 and I was down to 5mg of prednisone and 25mg
of Imuran. I lost 25 pounds and was feeling great. I
had no breathing problems or cough. The lung test remained
the same and I felt and looked better than I had in
years. I even went off the Zoloft.
On April 13, 2002 I had my first date
in over seven years. It happened out of the blue. A
friend called and said he heard I was single again and
would I like to meet his brother? Okay, why not? I can’t
keep spending money forever.
was unbelievable - a dream came true. Not only was he
the most compassionate, and thoughtful person I’d
ever met, he was also great looking and in great shape.
Chris was recently divorced and had just retired from
the Marine Corps after 24 year of duty as a helicopter
pilot. On our first date I explained all my medical
problems to him – and to his credit he was still
up for the challenge of a second date. He’s been
by my side ever since. I know without a doubt in my
mind he wants to be here. He gives me the strength I
need. He is my angel.
In July 2002, it was time to renew my
prescription for the IVIg. The company I work for changed
insurance companies and the new insurance carrier denied
the coverage of the IVIg. (It’s very expensive.)
At this point in time the IVIg was effective in the
treatment of my illness and I had my life back. So,
understandably, upon hearing the news that the new insurance
company didn’t want to cover the treatment, I
went nuts. I contacted the Connecticut State Attorney
General’s office, the president of my company,
my boss, the human resource office and anyone else that
would listen. In five days, the IVIg was approved for
another six months. Sometimes you just have to scream
a lot to get what you need.
January of 2003 I turned forty. Chris and I went to
for two weeks. It was a trip I’ll never forget
and was also the first time I had ever taken two weeks
off in a row from work. I felt great and never coughed
and I got lots of rest. I was taking 10 mg of prednisone
and 50 mg of Imuran. When I returned home, I went in
for a breathing test. In 6 months I had lost 10 percent
more of my lung capacity. I had somewhere between 48
and 38 percent left. It was time to try a new drug.
So I went off the IVIg and started Remicade.. It was
also time to really make changes in my life. This was
the turning point.
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