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December, 2004:
 We
had a great time in Budapest with our friends Cindy
and Mimi. We spent five days touring around the city.
Budapest is very beautiful; some would go as far as
saying it's the Paris of Eastern Europe. The city has
survived the invasions of the Turks, the Nazis, the
Communists, and now the invasion of the fast food chains
is upon them. You see McDonalds, Kentucky Fried Chicken
and Pizza Hut on every corner. I think it's kind of
sad. It takes away from that old world charm.
My
favorite part of the trip was the Gellert Hotel and
Bath complex. Chris and I spent the day there. We enjoyed
three plunging pools with water at different temperatures,
the sauna, the steam bath, and also had a massage, all
for less than thirty dollars total. You definitely get
your money's worth. It's cheaper to fly to Budapest
for five days than to spend a weekend at Canyon Ranch.
I'm
still feeling great. It's been eight months now that
my CPK's have been normal. They're currently at 90.
I feel like I've been through some kind of vortex and
I've come out the other side. For such a long time my
body ached, I was tired, had no energy and I even had
a difficult time breathing. Now, I'm starting to remember
what it feels like to feel good again. This is a feeling
I can definitely get used to. Yes, I'm still taking
drugs, 8mgs of Prednisone, 40mgs of Protonix, 75mgs
of Imuran and 700mgs of Remicade. Despite the amount
of drugs that I need to keep me going, I feel like I
have my life back, and feeling great everyday is a blessing.
Having
normal CPK's has allowed me to continue my Yoga classes.
Yoga is something I'm really starting to enjoy. I've
never been a flexible person, even before Polymyositis,
but in the short amount of time I've been taking the
classes, I've been very surprised at how my flexibility
and energy has improved. Even so, I'm probably the worst
student in the class, but I'm okay with that. I'm just
happy I'm in the class.
 This
has been a terrific year for me. Although I've had ups
and downs, this is a year I'll always remember. On the
down side I'll miss my two very dear friends Lewis and
Julia, who recently passed away. The positive things
were getting married, mastering prednisone, having normal
CPK's, traveling, adopting my dog Leo and learning more
about myself.
Have
a wonderful holiday season! Cheers to 2005 and may all
our CPK's and CAT scans be normal!
November, 2004:
Something
remarkable happened this month. Chris and I were cleaning
the leaves off the pond on one of the first cold mornings
this fall. It was around
33°F.
I was wearing gloves, however my hands got so cold they
hurt. I had to go in and warm them up. When I took off
my gloves I expected to see ghost white fingers a results
of Raynaud's (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). To my surprise I just had pink cold
fingers! They didn't turn black as they warmed up; they
just stayed that beautiful color pink. Could the Raynaud's
be gone? Or just under control? It's the little things
in life that make us so happy!
This
month during my Remicade treatment, I sat next to a
woman who was being treated for rheumatoid arthritis.
She was very upset that her doctor told her she would
have to take Remicade for the rest of her life. She
asked me if I had to take it for the rest of my life
as well. I have to be honest. That was the first time
I ever really thought about it. Come to think of it,
I didn't even bother asking the doctor the question.
I guess I already knew he didn't have the answer. However,
the brief thought of having to take Remicade, or any
drug, for life is a little depressing. I usually don't
like to think that far ahead, and for a good reason.
I have enough day-to-day stress so why add to it, especially
with something I have no control over. Needless to say,
I got over my brief depressing thought and went back
to my way of thinking, one day at a time!
 I've
started tapering off Imuran. I was taking 125mgs a day
and I've tapered down to 100mgs a day. So far my blood
work is still normal, my CPK's are 90. Dr Noble and
Dr Nesamento both agreed that the new plan is to stay
at 8mgs of prednisone until I get off of the Imuran.
November
has been a wild travel month for me. I flew out to California
on business and Chris joined me for a long weekend in
San Diego. We celebrated his grandson Aidan's, first
birthday. Yes, Aidan is grandson number two. Then I
had a trade show in Tennessee. While I was there, I
adopted a beautiful bear coat Shar-Pei, from the Tennessee
Shar-Pei rescue that I
found on Petfinder. His name is Leo. He looks just like
the cowardly lion from the Wizard of OZ. Leo is anything
but a coward. He's only a year old and tons of fun.
Leo is full of life and has added so much to our home.
I'm not sure Abigail is that crazy about him, but with
time she'll love him as much as we do. He's a great
addition to our family.
Leo
and Abigail
Then
for Thanksgiving we're off to Budapest to enjoy the
Turkish spas. Some say they're a great treatment for
rheumatoid arthritis. Let's see what they do for Polymyositis!
Julia:
My
good friend Julia passed away, she was 95 years old.
I feel very blessed to have had her in my life. She
was such a sweet person and a good friend.
 I'll
never forget the determination and will power she had.
Julia was the maid-of-honor at my wedding. She was amazing.
She had just gotten out of the hospital the Wednesday
before the wedding. However she wasn't going to let
that little setback stop her from attending, after all,
it was her idea that I get married in the first place.
So the morning of the wedding, I went over to the nursing
home just to make sure she had the strength. The doctors
gave the okay and she was able to attend. When I got
there, Julia was barking out orders to all the nurses,
fix my hair, color my nails. It was great! She was in
rare form. She had them all running around getting her
ready. The wedding wasn't until 6:00 pm however Julia
started getting ready at 9:00 am. What a day the nurses
must have gone through. When Julia showed up at my house,
she looked like an angel. She commented on how beautiful
the flowers were and how happy I looked. That was the
last time I saw her alert. Julia has been suffering
from dementia. However, on the day of the wedding she
was completely there mentally. It's really amazing what
the human body and mind can really do.
 When
I returned from my honeymoon the dementia had gotten
worse.
The
last months have been tough. I would go over to the
nursing home a couple of days a week and feed her lunch.
Feeding her was the only thing we could do together.
Most times when I fed her, Julia's eyes were closed
and she was out of it. However, she always perked up
when she got ice cream. So I made sure she always had
ice cream for dessert. Over the last couple of months,
it has been hard watching her fade away. I hated seeing
her in pain. It was very clear Julia wasn't happy. I
kept telling her, it okay to let go. On November 7 th
she finally did. Now she's at peace. I have visions
of her enjoying the sun with my little dog Lewis. That's
a comforting thought; knowing he's there with her and
she's with him.
I
celebrated Julia' life when she was alive. Going to
the nursing home weekly and seeing her that way wasn't
easy. I just always remembered how scared she was about
ending up there alone. That's what gave me the strength
and motivation. I'm not sure if she knew if I was there
or not. To me it didn't matter, she was my friend and
I wasn't going to let her down. She deserved only my
best.
Cheers
Julia to the wonderful life you had. Peace be with you
always.
Your
friend, Lenor
October, 2004:
This
has been a very exciting month for me.
 My
blood work is still under control, and to celebrate,
I signed up for a Yoga class once-a-week. Yoga is something
that's been on my long list of things to do. It's a
great way to learn how to stretch and breathe, the two
things I need most. It's a beginner class so it's relatively
easy. However when I get tired, I just sit on my mat
and watch everyone else. I can't tell you how exciting
it is to have options to do fun things again. For such
a long time, I was unable to do anything at all. So
for now, I'm taking it slow and discovering the new
me!
My
CPK's are 66, still normal.
My
Remicade treatment went very smoothly. No reactions
or problems. The treatment took two and a half hours.
I'm down to 8 mgs of prednisone and my CPK's are still
normal, they are at 66. I had a CAT scan this month.
I am happy to report I have no significant change in
the Lung Fibrosis. So that looks like it's currently
under control too.
Here's
some important information I found out about getting
off of prednisone.
Normally
the adrenal glands release about 7˝ mgs of cortisol
into the blood stream, more if you're stressed. Cortisol,
also known as cortisone, is a steroid that your adrenal
gland produces naturally. The brain monitors this amount
and regulates the adrenal function. However it can't
tell the difference between its own natural cortisone
or the prednisone you're taking. So when someone has
been taking high doses of steroids over a long period
of time (six years for me) the brain may decrease or
stop producing cortisol altogether. If that happens
it's called adrenal suppression. That's why it's so
important to taper off slowly to allow the adrenal gland
to recover and produce cortisol at a normal level again.
Everyone is different so I have to pay close attention
to my body when I get below 7 ˝ mgs. If I taper down
too fast before my adrenal gland kicks in, I could have
a flare up. If the production of cortisol is permanently
suppressed as a result of taking prednisone for so many
years, then I'll need to continue to take small doses
of prednisone for life.
I've
been on prednisone for over six years and have developed
cataracts and ulcers from the drug. So walking away
scot-free is unlikely. However understanding why my
body may need prednisone for life is easier for me to
accept. My next step is to look into finding supplements/foods
that help support the adrenal glands.
 This
month Chris and I have had baby Harrison (Chris' grandson)
for not one, but two weekends! We had a blast, however,
I have to say, wow, it was a lot of work. I'm not used
to having babies around. So when you have the challenge
of a little guy running around it's not easy. Harrison
is fourteen months old and an incredibly happy little
guy. He was a joy. He's at that great age, interested
in everything. God bless all of you who have kids and
have to deal with PM or PF at the same time. Of course,
Chris was unbelievable and there is no way I could have
done it without him. Never in my life have I met anyone
like Chris! He's so responsible and caring for others.
I am blessed in so many ways. My friends always say,
if only we could clone him!
September, 2004:
I
believe my allergic reaction to Remicade is finally
over!
Last
July I went into anaphylaxis shock and was taken to
the hospital and spent the rest of the day in the emergency
room. In order to avoid this, I've been pre medicating
very heavily before every treatment. However, over the
last six months I've shown no sign of a reaction so
we started cutting back on my pre meds. This last treatment,
I took only 10mgs of Prednisone and 10mgs of Zyrtec
the night before. The morning of the treatment, I took
my regular 10mgs of Prednisone and 125mgs of Imuran
and at the doctor's office they gave me 25mgs of benadryl.
The treatment took two and a half hours. It used to
take up to eight hours. Just so you know, in my doctor's
office they treat over 20 people a month with Remicade
and only two of us have had a reaction. I was the only
one sent to the hospital. See how lucky I am.
 I
can't believe it's already September! This summer has
flown by. One thing that Chris and I love to do is spend
time on the water, boating. We got a slow start this
year, due to the wedding and honeymoon. In New England
we have a short boating season to begin with. However,
we've been making up for lost time. We've been exploring
remote coves and tiny harbors, all around the Long Island
Sound.
Chris
and I took the boat to Shelter Island for Labor Day.
It was a very relaxing and peaceful weekend. On Saturday
night we enjoyed one of the most beautiful sunsets we've
ever seen. It made me realize, that in the last three
years, I've learned to really appreciate the beautiful
things life has to offer. Since I was diagnosed with
Pulmonary Fibrosis it has opened my eyes to everything
in life. I can remember when people used to tell me,
your health is the most important thing. I used to shake
my head and agree with them, but had little understanding
of what they were really saying. I'm not sure if they
really understood themselves.
Well
I understand now! It's called the Pulmonary Fibrosis
wake-up call!
 When
the smallest things in your life become a chore, like
tying your shoes, unloading the dishwasher, walking
to the mail box, or just everyday breathing, you start
to realize all the little things we take for granted
in life. You learn to appreciate the smallest things,
like unloading the dishwasher by yourself, jogging on
the treadmill for five minutes, staying up past 9:30,
beautiful sunsets and most of all a deep long breath.
Being diagnosed with Pulmonary Fibrosis has been a blessing
in my life. It has taught me to appreciate and enjoy
life so much more. It's like that song that Tim McGraw
sings “Live Like You Were Dying.” This is good advice
for everyone, with or without an illness.
With
September comes a trade show for me. It was kind of
scary retuning to a show. I ended up in the hospital
after the last one, six months ago. Trade shows are
very stressful and grueling and I really didn't want
to compromise my health in any way. I've been feeling
so good lately.
So
off to Vegas I went. My hot-water bottle was packed,
along with my vitamins, prescription drugs, yoga books,
power bars and bath salts. Soon I'll need an extra suitcase
just for all this stuff.
Jane,
one of my colleagues and good friend had a great idea
of taking our clients to the Spa at the Venetian! This
was such a treat. It's so much better than golfing,
or sitting at the bar. Jane booked five of us for a
relaxing couple of hours before the three day show started.
We started out with a Canyon Ranch lunch and then off
to our hour treatment. I had the aromatherapy massage.
It was amazing. It was a great way to start the show.
Yes, our clients loved it as much as we did. So we're
going to make it a tradition. Hit the spa before every
show!
When
I returned home I was feeing pretty good. My energy
was down a little, but that is to be expected after
a three day show. My lungs felt heavy, it was just a
little harder to take a deep breath. So over the weekend
I took care of myself. I created my very own spa day
at home! I used all the toys. I took a hot tub, a sauna,
steam shower then relaxed in my new tub. This tub is
amazing, it does everything, and it even has a heated
backrest. It was perfect for a rainy day weekend. By
Sunday I was feeling great again.
My
blood work came back and my CPK's are 36, looks like
Polymyositis is still under control.
August, 2004:
“My
Health is under Control for the first time in six years.
It's so exciting to wake up and feel good in the morning”
 My
blood work has been normal for the last five months!
The doctors increased all my meds after I got out of
the hospital in April and I feel so much better. I took
high doses of Prednisone for about two months until
my CPK's were normal. Then I tapered down slowly. I'm
currently down to 10mgs per day. I also went up on the
Imuran from 25mgs to 150mgs leveling out at 125mgs.
I'm still taking 700mgs of Remicade once a month at
the doctors office.
I
made a list of what's changed since April, as well as
things that have been working for me. Getting to this
stage hasn't been easy. I've put a lot of time and discipline
into changing my life and lifestyle. However, it's well
worth it. I feel great, and I'm very happy!
No
Sugar (or artificial sweeteners)
No
Salt
No
Yeast
No
Caffeine
No
Alcohol with the exception of a glass of wine every
now and then
No
processed food
I
eat fish three times a week (Wild Alaskan Salmon, Arctic
Char, Tilapia (Farmed)
I
drink lots of water
Daily
I take Calcium with Vitamin D, Zinc, Selenium, Vitamin
A, C, & E and Omega-3 fatty acid as well.
I
sleep about 9-10 hours a day.
I
go to the gym twice a week for 30 minutes.
Once
a month pulmonary rehab
Yoga
tape couple of days a week
I'm
living in a very healthy environment
I'm
extremely happy in my relationship with my husband
and
I'm happy at work
I
have dreamed of this stage for such a long time. I feel
like I won the lottery!
For
such a long time my body hurt and I was scared of what
was going to happen. In the past people I've been close
to told me I would never get better and I believed them
and went into depression. However, something deep inside
told me they were wrong. I just had to prove it. Well
I did, and
I
LOVE TO BE RIGHT!!!
It's
not easy living with autoimmune disease and feeling
good didn't come easy. I've have never taken the easy
road to anything in my life and this was no exception.
I feel each month that my CPK's are normal that I'm
getting closer to that wonderful word REMISSION.
Our
house is done! NO MORE MOLD!
 It
took fourteen months to remove the mold and rebuild
a quarter of the house. The house went from a moldy
little shack, to a beautiful home. I can't tell you
how wonderful it is to walk into a clean air environment
every day—not to mention, a brand new house. It's strange.
The house construction is done, and I'm the healthiest
I've been in six years. I am sure it's just a coincidence.
My house and I have been through a lot together, but
we made it! If you're interested is seeing the before
and after photos, I've updated My Healthy Home section.
Now
that my CPK's have been normal for the last five months,
I asked Dr Noble if I could start tapering off Imuran.
He told me it would be better if I continue decreasing
my prednisone, before decreasing the Imuran. Dr. Nascimento
agrees. I'm currently taking 12 ½ mgs of Prednisone
on even days and 10mgs on odd days. Next month I'll
start going down one milligram at a time. This is where
I've made the mistake in the past of going down too
fast. When you hit the 10mgs mark, you need to taper
down slower. This allows your body to kick in and start
producing it on its own. Your body produces about 7
½ mgs when it's working. When I went down too
fast I would get a flare-up, and have to start all over.
My
concern with both Imuran and Remicade is they suppress
the immune system. I am afraid I can't take both for
a long period of time, without some kind of side effect.
To date, I believe I've been successful in holding off
some of those side effects, by changing my lifestyle.
I try every healthy thing I can and I really believe
it's been working. When I was first diagnosed with Polymyositis,
I didn't have a healthy lifestyle or mindset at all.
Today, I do, and my health is proof. My body tells me
when it needs rest, and over time, I've learned to listen
to it. I eat better than I've ever eaten, I exercise,
and I'm not stressed or unhappy. I have a very fragile
immune system, and I have to respect that.
Chris
and I are very excited about my new found energy level.
We've been going to the gym twice a week. At the gym,
I've been walking on the treadmill, and I'm starting
to jog! Yes, I said jog! I'm up to five minutes. My
lungs give out before my legs do—however, they're not
far behind. It's such a great feeling to workout and
not feel bad the next day. I've been taking it very
slow. My goal is to go skiing this winter. I know, it's
a very big goal—just the bunny hills!
 With
an autoimmune disease, I think the hardest thing I had
to do was to let go of the person I was, and try to
figure out who I was going to be.
For
the first time in six years, I've accepted that, and
I'm okay with my limits. I realized this, this past
weekend, when I was asked to help out in the charity
event, “Swim across the Sound.” At the last minute,
one of the teams needed a boat. So a friend of mine
thought of me. (Thanks Fran). I grew up swimming and
the old Lenor would have LOVED to have been on the team.
However, the new Lenor was very happy and excited about
just being the Captain of the boat. As it turned out
it was a very long day, and very exciting, we came in
fifth out of twenty-three teams. So instead of being
unhappy about not being able to swim, I was happy about
being able to just be part of the team. I've learned
I can still be on a winning team with an autoimmune
disease!
July, 2004:
Wow!
CPK's are 28, and I'm a married woman!
 Two
days before the wedding, I juiced up with Remicade,
and I went down further on my premeds. I didn't want
to suffer from mood swings or a swollen face just before
the wedding—a bride on steroids could have gotten out
of hand—however, I am happy to report it didn't. I took
10mg of Prednisone and 10mgs of Zyrtec the night before.
That morning I took 15mgs of Prednisone and 125mgs of
Imuran. When I got to the doctor's office they gave
me 20mgs of Solumedrol and 15mgs of Benadryl and a half
of a bag of saline. The treatment took two and a half
hours, with no reactions.
I'm
continuing to taper off the Prednisone. I'm taking 15mgs
on even days and 12 ½ mgs on odd days. I haven't
gained any weight; in fact, I continue to lost weight.
I'm still not eating any salt or sugar, and I'm still
not drinking coffee.
I
am completely cough free!
When
I was first diagnosed with Pulmonary Fibrosis in March
of 2001, my first reaction was to ignore it. Maybe it
will just go away. When that didn't work, I decided
I had better do something about it, or at least try.
So, I read everything I could find. I put all my energy
into trying to stop it. I went to several different
doctors, until I found two I really liked. Dr. Noble,
he's at Yale and Dr. Kurtz, is at the Norwalk Hospital.
As it turns out they went to school together. Dr Kurtz
is a wonderful, even-tempered woman. She is always reassuring
me that everything will be fine. She has patients that
have Idiopathic Pulmonary Fibrosis and they've been
living without supplemental oxygen for years. IPF is
more aggressive. Dr. Nobel has always been the more
concerned one. However, he thinks I'm doing great now.
All my x-rays, cat scans and MRI's have not shown any
increase in fibrosis in the last six months. So, something
is working. Maybe it's just happiness!
I've
learned the most important thing to do is check your
oxygen levels.  You
can do this with a Pulse Oximetry. You can find a used
one on Ebay for around $225.00. I also think pulmonary
rehab is very important. I go once a month. Margie is
the head pulmonary nurse at the Norwalk Hospital. She
has me walk on the treadmill, ride the bike and do stand-to-sit
tests. While I'm exercising she checks my oxygen levels.
I've never fallen below 96.
The
one thing I've learned is that if I can control my Polymyositis,
I can control the Pulmonary Fibrosis. Before my CPKs
went down, I was having a hard time walking 100 feet
without coughing or becoming out of breath. Now, if
you met me today, you would never know I have a lung
disease.
I had visions of walking down the aisle with an oxygen
tank strapped to my back. Okay, so that's a little dramatic.
When you're a bride on steroids you think of all kinds
of weird stuff. I'm happy to say that since my CPKs
have been normal, I've felt great. My body isn't hurting
all the time, and I have energy. My wedding was a true
test. I walked around and mingled with everyone for
hours, without sitting down. The next day when I thought
“now it's pay back time” it wasn't.
I
still felt great.
 Chris
and I went on an amazing two-week honeymoon. The day
after the wedding we boarded the Queen Mary 2, out of
New York City, headed for South Hampton, England. Cruising
is a wonderful way to go, if you want to get lots of
rest. Once we got to England , we flew to The French
Riviera for a week, stopping off in Provence for a couple
of day. This trip was over the top! We had such a wonderful
time, and the best part was I felt great the entire
time.
June, 2004:
Wow!
CPKs are 46!
This month has been a roller coaster of emotions for
me. On one hand it's the happiest time of my life--I'll
be marred in a couple of weeks--and on the other hand
I'm still having a hard time with the loss of Lewis.
I miss him every day. It's hardest when I drive up the
driveway and he doesn't come running out to greet me.
Everyone has been wonderful in helping me cope with
this. I want to thank my friends for the donation to
Operation Scarlet in Lewis' name. The money will help
Shar Pei 's that are homeless.
You
guys are the best!
The
good news this month is my CPKs are 46. That's the lowest
they've been in a very long time, so something is working!
I didn't have any reaction to Remicade this month, and
I went down on my premeds. I only took 20mg of Prednisone
and 10mgs of Zyrtec the night before. That morning I
took 20mgs of prednisone and 125mg of Imuran. When I
went to the doctor's office they gave me 40mg of Solumedrol--that's
half of what I took before. They also gave me half of
the amount of Benadryl (25mgs) and only a half of a
bag of saline.
 I'm also starting to taper off the
Prednisone. I'm taking 20mgs on even days and 17 ½
mgs on odd days. I'll do this for a month and then I'll
take 17 ½ mgs on even days and 15 mgs on odd
days. I can only go down 2 ½ mgs per month. Like
I said before it's going to take a long time to get
off this drug. But the good news is I've mastered some
of the side effects that Prednisone can cause. I haven't
gained any weight, in fact I've lost weight. I went
from a size 10 to a 6. I feel like the Prednisone "suit"
I've been wearing for the last 6 years is finally off,
and I feel great. It sucks not eating salt or sugar
but the end results are worth it. So if you're taking
Prednisone you should read the book "Coping with
Prednisone" It really works.
I've
been getting some e-mails on insurance and I wanted
everyone to know that, all my treatments to-date have
been paid for by my insurance company, 100 percent!
It takes some work on my behalf, however in the long
run they always approve it. I'm working on an insurance
section for the Web site. I hope it help others with
getting approvals from their insurance companies. Just
keep in mind insurance companies are only interested
in making money; they are not interested in your heath.
That's
up to you!
The
next time I check in I'll be a married woman! Wow, life
is strange. Sometimes the worst things in our lives
turn out to be the best things. My illness taught me
to grow up, and realize what's important in life. I
feel very blessed to have Chris by my side along this
journey.
Lewis:
On
May 26 th I had to make one of the hardest decisions
of my life. (You'll only understand this if you're an
animal lover). I found out my 8-year old Shar-Pei had
cancer of the spleen, liver and kidneys. He was also
bleeding internally. The doctors talked to me about
chemo, but they didn't advise it. The best thing to
do was to put him to sleep. At first, I didn't want
to, I wanted to try anything. But then I looked in his
eyes and could see the pain and I knew it would be fair.
So, Chris and I made the decision. We said our lasts
good-byes, and watched him drift off as I held him in
my arms.
 I've
had dogs all my life. However Lewis and I had a very
special bond. You really had to see us together to understand
it. I was 33 when I got Lewis; it was a year after my
15-year old Siberian husky passed away, his name was
Clark . Lewis was only 7 ½ weeks old when I brought
him home. He looked like a baby pig, he was so cute.
Since I didn't have children, Lewis instantly became
my baby boy. I filled his years with birthday parties,
Christmas photos with Santa, and trick-or- treat outfits,
Lewis loved getting dressed up. I even got him a “dog”
Abigail. Lewis was my best friend, and my baby boy.
I will never forget the unconditional love he had for
me. He was always there for me.
 Chris
and I went to Montana for a wedding and I found a t-shirt
that reads
“Leave
only tracks….Take only memories”
It's
from the great Lewis & Clark expedition. It was
perfect.
This
experience has taught me life is too short for all of
us. Make the most of it and enjoy everyday because you
never know what is in the future.
Lewis:
May 5th 1996 – May 26th 2004
"He
is your friend, your partner, your defender, your dog.
You are his
life, his love, his leader. He will be yours,
faithful and true, to the
last beat of his heart. You owe it to him to be
worthy of such
devotion".
May:
Last
month when I was driving home from New York all of a
sudden it hit me, I'm not doing this anymore! I'm done
with being sick! I'm tired of being the victim of illness
all the time, and I'm tired of taking toxic drugs. So
I made a commitment to overcome this. Six and a half
years is enough! I have always been able to accomplish
anything I put my mind to, so my new goal—my only goal
at this time—is to go into remission. I'll do whatever
it takes. My body still hurts but my attitude has transformed.
I want control over my heath! I'm just not sure how
I'm going to do it, but I will.
 I've
mastered prednisone—a step in the right direction! I've
been taking 40 mgs a day for the last month and I'm
happy to report I've experienced no moon face or weight
gain. So the diet of no sugar, no salt or yeast is working.
And just to make life a little more challenging, I've
also stopped drinking coffee. Yikes! I have enjoyed
coffee for so long that this denial was hard for the
first couple of weeks. I had headaches for several days,
but I got through it and now I feel great.
Look!
No Moon face!
I
lost a lot of my strength due to steroid myopathy, however,
once I started tapering the prednisone my strength came
back. Prednisone has to be tapered very slowly. So getting
off this drug can take years.
I
didn't have any reaction to Remicade this month—the
treatment took three hours. I'm happy to report the
swelling and nodules on my legs are gone. I would like
to think everything is turning around because of my
new attitude, however, I'm sure it's because of the
higher dosage of Imuran (150 mgs) and prednisone.
My
house is almost done! They're starting construction
on the master bathroom this week—that's the last room
to be completed. You can see before and after photos
under “My Healthy House.” Chris and I have been working
on this construction/mold clean up for the past year.
It hasn't been easy however the results have been well
worth it. The house went from a moldy little shack to
a healthy and beautiful home. The best part of remodeling
the house is that there is now “A place for everything
and everything in its place” Martha Stewart would be
so proud of us.
 I
went to Italy this month for a trade show and I didn't
push myself at all. Okay, going to Italy after just
getting out of the hospital was a little bit of a push!
But I felt great and my CPK's are down to 340. I got
lots of rest, ate great food and did my job and came
home.
When
I returned from Italy, we celebrated my dear friend
Julia's 95th birthday.
Cheers
Julia, Happy Birthday!
April, 2004:
My
test results came back on the nodules (Edema) on my
legs. The doctors were testing for an infection or lymphoma.
The good news is I don't have either, I have myositis!
I think the nodules were results of a flare-up. In my
case, Edema is swelling of both legs from an accumulation
of excess fluid. Edema has many possible causes, Myositis
being one of them. It's just another way my body tells
me that I'm having a flare-up. It's something I need
to watch in the future!
After
my hospital visit, I was finding it impossible to get
my strength back. Infact, as each day went by, I was
getting weaker and weaker. By the time I went in for
my Remicade treatment I could hardly walk or lift my
arms. Dr. Nascimento informed me I have steroid myopathy.
Great…
what's that?
Steroid
Myopathy is when your body becomes very weak after taking
high doses of steroids (Prednisone). When I was in the
hospital they had me on 80mg of Solumedrol (IV form
of Prednisone) and when I left, I went down to 40mgs
of Prednisone per day. The weakness will go away after
I reduce the amount of Prednisone I'm taking. It's a
fine balancing act. I need to take Prednisone in order
to keep my CPK's down so I don't have muscles weakness,
however, if I take too much it will cause muscle weakness.
It looks like my silver bullet isn't working.
My
Remicade treatment went very smoothly. No reaction this
month. More good news, the diet's working! I haven't
eaten any salt, sugar or yeast since I left the hospital.
When I was in the hospital I lost seven pounds and so
far I've only gained two pounds back. If you've ever
taken high dosage of Prednisone you know what an accomplishment
this is. There are many side affects from Prednisone
including weight gain and moon face. And to top
it off you have a ferocious appetite. If you gain any
weight it usually comes off after you reduce your dose,
however I get very depressed when I look in the mirror
and see a big moon face! The reason I stress about my
weight is that I'm getting married in July! Don't get
me wrong I'm not overweight. In fact I'm at my ideal
weight. I just don't want to gain any more. I remember
three years ago when I gained 30lb and how depressed
I was. I know that won't happen this time. I'm
in such a better place in my life, even if I do gain
weight.
April 13th Chris and I celebrated our two year anniversary.
I have to say they've been the best two years of my
life. Yes, even with everything going on with my health.
I don't have a friend that hasn't agreed Chris is the
best! Everyone is so proud of me for growing up and
realizing what really is important in life.
Dealing
with chronic illness is a full time job, however, when
you have the right person by your side it makes everything
so much easer. I can't ask for anything more. The support,
love and commitment Chris provides is remarkable. He
is always there for me.
When
I thought of how empty my life would be without Chris,
I decided to ask him to marry me. Yes, I asked him.
First, you have to understand that I was a confirmed
bachelorette. I had made that quite clear, to everyone,
over the years. I dreamed of a relationship where love
and the sincere desire for each other's companionship
kept us together, not a piece of paper. I've learned
that that idealistic relationship is based on honesty,
integrity and moral courage. The key is finding the
right person. When I met Chris, for the first time,
I realized the flaw wasn't in the institution of marriage
but in the individuals. I was ready to take the plunge.
 On
July 4, 2003 we took my boat up the Connecticut River
to Chris's favorite spot, Hamburg Cove. I put on my
sexiest black dress and gave him 24 carrots (Organic
ones!) and asked him to marry me. After the look of
disbelief faded, and the blood returned to his face,
he had the biggest smile with the most adorable dimples,
and answered YES!
So
on July 4 th 2004 we will be married in our garden with
our two dogs and 25 fish and our friends and family.
March/April:
Wow,
big bump in the road!
After
the trade show ended on Sunday March 28th I went home
and crashed. My body was killing me! I was coughing,
my legs were swollen and I felt I had spent every last
bit of energy I had left. When Monday morning rolled
around I didn't feel that much better. Monday night
after dinner I felt pain in my chest. It was like indigestion.
Tuesday morning I woke up with the same indigestion
feeling. It felt like someone was standing on my chest
all night. I called my MD's office and made an appointment
for later that day. By the time I made it to the doctor's
office I was really feeling bad. I parked the car and
walked up to the office completely out of breath. It
was a good thing the receptionist knew me. I couldn't
get my name out. They rushed me into the office and
called the doctor. They started testing my heart immediately.
I was put on a monitor and the results were fine, however
my coughing was getting worst and I got sick to my stomach
twice. They took an x-ray of my lungs, and after examining
the results, Dr. kulakov took one look at me and said
you have pneumonia and you need to check into the hospital.
My first thought was it can't be that bad! Second thought,
I could use the rest.
As
I was checking into the hospital instead of giving them
my America Express card (Thank god) I was giving them
my insurance card. I was thinking… well let's see, I
spent last weekend at the Crown Plaza in New York City
and this weekend I'm at St Vincent's hospital in Bridgeport.
How fast things change!
 After
I checked in and was wheeled to my room they hooked
me up to two different antibiotics. 750 mgs of Zinacef
and 500 mgs of Zithromax twice a day, a bag of fluids,
and 80mg of Solumedrol! (Prednisone)
Wednesday
the fun began! It started about 7:00am. I woke up to
someone telling me I needed to get on a gurney and that
I was headed for x-ray. At this time I wasn't feeling
any better. My cough was getting worse and all I wanted
to do was sleep. I made it through the x-ray and back
up to my room. I talked to a couple of doctors about
my health & history, and what the game plan was
going to be.
Before
I knew it the gurney was back! This time it was for
an upper g-I. It sounds as bad as it was. Over the years
I've done a lot of testing and this has to be one of
the worst ones. First you gargle with this mouth wash
that taste awful. Well it's not really mouth wash, it
a wash that numbs your mouth and the back of your throat
so when they put the tube down your esophagus it's not
so bad. You do get a local so you don't have to deal
with it entirely, however, choking and gasping I have
to say isn't fun!
I
wake up to Dr Woods telling me I have ulcers in my esophagus
and upper stomach as a results of taking meds, Motrin
being one of them. He starts me on 40mgs of Protnix
twice a day. One more IV to add to the IV tree that's
following me around!
Back
up to my room.
I've
been on liquids ever since I arrived so my breakfast
was just that. It didn't matter, I wasn't in the mood
to eat. A nurse came in and took a bunch of blood and
before I knew it that gurney was back! This time for
a CAT scan of my lungs, with a side of blue die so they
can see what's really going on! I'm very allergic to
the blue die, so they gave me 50mgs of benadryl in a
pill form. It doesn't kick in as fast as the IV form,
however it did the job. No reaction to the die. Back
to my room!
Short
nap and there it was again, the gurney! Now I needed
a sonogram on my legs and stomach to make sure I didn't
have any blood clots. That took about 40 minutes and
then back to my room. All I wanted to do was sleep…
but they weren't going to let me. Silly me, I though
you got rest in a hospital. Boy was I wrong.
Then
the parade of Doctors, one by one, telling me what I
did and didn't have. So here's the short list: my CPKs
went up to 1,728. I'm severely anemic. I have ulcers
from all the medication I've been on, and I have pneumonia.
Oh I almost forgot to top it all off, I started my period.
(I didn't need the doctors to tell me this one) The
good news, no blood clots.
I
spent six days resting and sucking up the bags of IV's
and reading my old book on coping with Prednisone. I
don't want to blow up on this stuff so this time I'm
really going to not eat any salt, sugar or yeast. It
shouldn't be that hard I don't eat that much as it is.
We'll see if the diet works.
On
Saturday I pointed out some lumps and burses that were
on the back of my legs, just above the knee. The lumps
run along the ligament. None of the doctors could tell
me what they were, so on Monday before I went home I
had to have a MRI, on my legs. Oh boy, one last gurney
ride!
Monday
afternoon I was sent home.
Thanks
everyone for the phone calls the flowers, candy and
magazines. Your love and support was overwhelming.
March, 2004:
March
hasn't been one of my better months!
My
Remicade treatment took 2 ½ hours, it looks like
my body is getting use to it. I had a new nurse Gail
that administered the Remicade this month. She was shocked
at the amount of pre-meds I was taking. I explained
to her the only reason I was going through all this
is that the Remicade is really working for me. I'm up
to seven vials every thirty days. That's a lot! The
woman next to me was only taking three vials every eight
weeks.
I
had no reaction this month. The night before my treatment
I took 20mg of Prednisone and 10mgs of Zyrtec. That
morning I took 20mg of prednisone and 100mg of Imuran.
When I went to the doctor's office they gave me 80mgs
of Solumedrol and 50mgs of benadryl. I'm starting to
look forward to the benadryl nap each month, benadryl
really knocks me out.
I've been battling with an infection for over five weeks.
One of the biggest problems with taking a drug like
Imuran, is it suppresses your immune system, so when
you get any kind of infection it's hard to get it under
control. It's taken four different kinds of antibiotics
to get this under control. It was 250MG of Cipro for
ten days that did the job.
I'm
not sure if I feel bad because of all the additional
drugs or because my body is getting use to the Remicade
and its not working as well as it did. This month it's
been harder to breath, and my body is killing me. My
old friend Mr. fatigued is also back! I feel so exhausted
and wiped out most of the time. By the time the weekend
rolls around I'm beat. My breathing test hit an all
time low 46% Lung Volume and 46% Diffusion. Looks like
I'm going to have to change meds soon.
To
top it off I had to attend one of the largest trade
shows of the year. I always seam to rally, what ever
it takes I get the job done then go home and crash and
boy did I. Thank God for Chris. My next treatment of
Remicade is the first week in April. I hope it makes
differences.
 The
good news this month is my house. The library and guest
room are done. We call the library the green room. It's
a great place to have breakfast and watch the sun come
up in the morning. It's also a great place to read and
work on the computer. The dogs love the room almost
as much as we do. They love napping in the sun all day.
More
good news, I think winter is over for the East. My yard
is starting to come alive. I have flowers in my garden
that are blooming and my fish are starting to eat again.
I have a pond with about 25 fish in it. They hibernate
for the winter. They stop eating in October and start
up again in March or April, as long as they have air
they live all winter with snow and ice.
Nature
is truly remarkable.
February, 2004:
CPK's
went up to 657!
A
week before my treatment of Remicade, I was feeling
pain in my hips and had to take Motrin a couple times
a day. The pain was a sharp stabbing feeling in the
hips joints. By the end of the day I couldn't do much
except lie down with my feet up. As soon as I had the
treatment, the pain went away.
 I
had no reaction to Remicade this month. I took 20mg
of Prednisone and 10mgs of Zyrtec the night before.
That morning I took 20mg of prednisone and 100mg of
Imuran. When I went to the doctor's office, they gave
me 80mgs of Solumedrol and 50mgs of benadryl and hooked
me up with two lines, one with the Remicade and the
other with saline. It took 2 ½ hours for the
treatment. This was the fastest month ever.
Other
than the pain in my hips I've felt great this month
despite the rise in my CPK's. They went up 203 points
from last month. I'm at 657. I'm not sure why they went
up. I've stayed on the same meds and haven't changed
anything. My breathing is still great, no cough and
I have lots of energy. I went in to see Dr. Dafick (my
MD) and he is also very surprised at how well I'm doing.
It's great to get positive feedback from doctors.
My
house is also recovering slowly. We discovered mold
in May of 2003. We had the mold professionally removed,
which involved extensive removal of contaminated wallboard
and insulation. It's been hard living through the subsequent
renovation however I see a light at the end of the tunnel.
So far the guest room is rebuilt and ready for furniture.
The laundry room is also done. We are still working
on the two bathrooms and the library. With any luck
they'll be done next month.
Chris
and I took a week vacation to the Caribbean Islands.
Chris's brother Jim and his family moved to St Thomas
in October. We went down to see them and do a little
island hopping on our own. The weather on the East Coast
has been so cold. It was great to get away somewhere
warm for a week.
 On
our vacation I went parasailing, and boy was it fun.
It is really easy as long as you're not afraid of heights!
All you need to do is buckle up and sit back, and then
up, up, up you go. The hardest part was holding my arms
up for 15 minutes. The best part was feeling the freedom.
As I was floating 300 feet above the water, I thought,
wow, I'm doing something that healthy people are afraid
of doing, and (believe it or not) that made me feel
normal. Of course I lied when I filled out the waiver.
I also felt very safe seeing Chris on the boat below
watching my every move. I think he was more nervous
than I was. There is nothing like having your very own
retired Marine ready to spring into action if anything
happens.
January, 2004:
Happy
New Year! CPK's down to 454!
Chris
and I celebrated New Year’s Eve with an early
evening with some friends. We were back home and did
the count down by 9:00 pm from the hot tub. I was feeling
a little sore and tired. I need a lot of sleep so staying
up until midnight and drinking isn’t an option
for me. I’m always worried about New Year’s
Eve and all the people that drink and drive. I prefer
to stay home and off the roads.
 It
was my birthday this month. I turned 41. Wow, I can’t
believe that. What’s hard to believe is when I
first got sick I was only 35 years old. It seems like
a lifetime ago.
The
only reaction to Remicade I had this month were hives
on my left leg, other than that I was home free. I went
down on my premedicating meds the night before the treatment.
I took 20mg of Prednisone and 10mgs of Zyrtec. That
morning I took 20mg of prednisone and 100mg of Imuran.
When I went to the doctor’s office they gave me
80mgs of Solumedrol and 50mgs of benadryl and hooked
me up with two lines, one with the Remicade and the
other with saline. It took three hours for the treatment.
I’m starting out the new year right.
I
saw Dr Noble the lung specialist at Yale this month.
He was very surprised at how well I was doing, the last
time I saw him was in November. November is when I increased
the Imuran, before that I was coughing a lot and had
very little strength. I’ve improved so much Dr
Noble said it was like treating a different person.
He was going to change Imuran to Cytoxan. However he
feels I shouldn’t change anything else unless
I take a turn for the worst. So I’m staying on
100mg of Imuran, 20 mgs of Prednisone and Remicade for
now. I go back for a follow up in April. Here's a copy
of Dr
Noble's notes (pdf) from my appointment.
I
had my monthly Pulmonary Rehab visit. Margie was also
very surprised at how well I was doing. The first time
I did the sit to stand test I could only do 9 in 30
seconds. This month I’m up to 25 in 30 seconds.
I’m so excited. The last couple of months I’ve
had such a change in my life. I can hold a conversation
with out catching my breath. I can go on long walks.
I’m neither in pain nor coughing all the time.
I have energy and I feel great.
 My
house is coming along nicely. We’re in the rebuilding
stage after discovering “the Mold.” I can’t
wait until it’s done. We have been working on
this since May of last year. In addition to ripping
down and rebuilding one quarter of the house, we also
installed a new heating and air conditioning system
with an air cleaning filer. The air cleaning system
is a filtration device designed to remove dirt, dust,
pollen and other microscopic particles from the air.
It also has a built-in humidifier. I’m trying
to create the cleanest air possible.
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