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December, 2003:
 Christmas
day, Chris and I took the dogs for a two-mile hike,
yes two miles. It was all flat terrain. My dog Lewis
helped me out by stopping every few minutes. He’s
a male and has to mark everything so I had time to catch
my breath. I used to mountain bike years ago in this
park and it was a great feeling to go back and enjoy
the outdoors. I’ve missed the outdoors so much.
I just hope my body doesn’t pay for this later
in the week.
NO REACTION THIS MONTH TO REMICADE!
I
premedicated the night before with 40mg of Prednisone
and 10mg of Zyrtec. That morning I took 40mg 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 about four
hours for the treatment.
I’ve been feeling great for two
months so something’s working. Dr. Nascimento
increased my Imuran to 100mg. I think it’s the
Imuran and the Remicade together that are making me
feel better. Chris says don’t change a thing including
your socks!
My cough is gone. I have more energy and
my muscles feel fine. When I do have pain I take Motrin.
My CPK’s went down in November to 503, the lowest
they’ve been in eighteen months. I’ve seen
improvement in my follow up visit to rehab. My walk
test improved by 185 feet from the last text. My leg
strength improved by 20% this past month. (12 stands
in 30 seconds compared with 10 in the sit to stand test).
My oxygen saturation is 99% at rest and with exercise.
That’s normal. My exercising dyspnea is still
moderate to somewhat severe.
I went in for an Echocardiogram test and
passed. They were looking for pulmonary hypertension,
a side effect from Pulmonary Fibrosis. The only thing
they found was a mild Mitral valve prolapse (seen in
10% of all women). Mitral valve prolapse is when the
Mitral valve bulges backward into the left atrium or
the valve doesn’t close properly. The effect on
your heart is usually minor and has very little symptoms
if any. The Doctor recommends I take antibiotics before
dental work to prevent valve infections. Mitral valve
prolapse has nothing to do with Polymyositis or Pulmonary
Fibrosis. Just something else to add to the ever-growing
list of health issues.
 My
friend Julia, who’s 94, went into the Hospital
in early December after a fall. She was living in a
retirement home and fell down in the bathroom so they
sent her to the hospital to make sure she didn’t
break anything. They also wanted to check her out head-to-toe
(she’s has been suffering from dementia lately).
She is such a wonderful and very special women. I’ve
known her for about eight years. The last three years
we’ve became very close. She was always concerned
about my health and how I was doing. Without giving
her too much information on my health, she always seamed
to know what was really going on. She knew me before
I got sick so she’s been with me through the whole
thing.
 Now
it’s my turn to take care of her. She’s
been moved to a nursing home and has to share a room
with another women that seems to be in worse shape than
she is in. The home is fine and all the nurses seem
to like what they do. Most of Julia’s family lives
out of town so she doesn’t get a lot of visitors.
Nursing homes are so sad. It’s the last stop,
and most family don’t want to go because it’s
so depressing. I feel this is really the time they need
you the most, when they’re at their worst. Focusing
on others always helps me deal with my own health issues.
As I said before, it can always be worse.
I think a very important part of life
is taking care of each other.
Happy Holidays and Cheers! To a Healthy
New Year!
November, 2003:
 Thanksgiving,
Chris and I took advantage of the long holiday weekend
with a couple of our good friends, Bill and Bonnie.
We stayed at a friend’s house in Vermont enjoying
the cold weather with great wine, fires and antique
shopping. I spent Saturday at the spa getting a facial
and detoxifying with an herbal rap and sauna, and for
the first time I had Reflexology.
That’s when they give your feet a massage. As
the woman was massaging my feet she asked me if I have
been coughing because she noticed I had crunchy stuff
in my lungs. I almost fell off the table. I never told
anyone in the spa about my illness, and here was a woman
that could tell I had problems with my lungs just by
rubbing my feet! She told me it was a blocked pressure
point and if I keep it open I would feel better. So
on the drive home from Vermont we stopped in a small
town in North Hampton, MA. They have great vegetarian
restaurants and wonderful shops. I found reflexology
socks. They point out all the pressure points. So twice
a week Chris has volunteered to give me a foot massage
(he’s the BEST). As I continue on my path of trying
new therapies and treatments.
I
had a mild reaction to the Remicade
this month. I premedicated the night before and the
morning of the treatment the same as I did in the past
months. I had a very mild reaction because we started
out too fast. I can't take anymore than eight drops
per minute for the first hour. After that first hour
I can speed it up some however, when I start to feel
bad they turn it off and flush with saline.
Dr. Nascimento and Dr. Dafcik thought
it would be a good idea to see a specialist in pulmonary
fibrosis at Yale, Dr Noble. Dr Noble spent over an hour
with me reviewing the last five years of my life. I
talked to him about a lung transplant and he didn't
think I would qualify because of the Polymyositis. I
was a little upset. Now I know. I'll have to work harder
on controlling the Polymyositis. Dr Noble and Dr Nascimento
decided it would be best if I changed Imuran
to Cytoxan.
So December I'll start Cytoxan. I'm not really looking
forward to it, I really hate these drugs; it's such
poison. The side affects are always worse than what
I have. Here's a copy of Dr
Noble's notes (pdf) from my appointment.
The best part is he thinks I look slightly under 40!
 Chris
and I went on a short vacation with my brother Don and
his girlfriend Robin, to Praque.
What a beautiful city! We had a great time. My brother
lives in California so I don't always see him, so this
was a special treat. The best part of the trip was I
felt great! No coughing, minimum muscle pain; I haven't
felt this good in a long time. When I came back I had
a lung test and the results were very good. There hasn't
been much of a change.
My
Pulmonary
Rehab (pdf) is over this month.
My follow up will be once a month for a checkup. I'll
miss seeing Margie twice a week, however, I won't miss
the 7:30 am appointment time! This program was wonderful.
It really helped me understand a lot more about my illness.
THANK YOU SO MUCH Margie. You're the BEST!
October, 2003:
NO REACTION THIS MONTH TO REMICADE!
I premedicated the night before with 40mg of Prednisone
and 10mg of Zyrtec. That morning I took 40mg of prednisone
and 50mg 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. I started the treatment
at 11:30 am and went all the way without a reaction.
Thank God! The treatment ended at 3:30. My next treatment
is in four weeks.
My blood work hasn’t been that good
so the Doctor is having me increases Imuran to 100mg
per day and 20mg of prednisone. I had my blood tested
on October 22, and the CPK’s dropped to 691. I
think it’s because of the increases of the Imuran.
September, 2003:
For
my treatment of Remicade this month, I premedicated
the night before with 40mg of prednisolone and 10mg
of Zyrtec. That morning I also took my 20mg of prednisolone
and 50mg 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. I started the treatment
at 10:30 am and we started with 8 drops a minuet. Twenty
minutes into it I started feeling the tightening of
the chest and the over whelming heat, I was going into
shock again. They stopped the Remicade started the saline
and gave me another 40mg of Solumedrol and waited one
hour. I left the doctors office at 6:30pm it took all
day.
The day after my treatment I went into
New York to my office and worked. I felt great with
all the prednisone I took the day before. I had all
kinds of energy. By the third day I was feeling the
effects of running around. It’s payback time.
Will I ever learn? I could hardly get out of bed. I
had to take a hot bath and Motrin just to move around.
I need some kind of balance with all the
drugs I am taking. This month I traveled to Las Vegas
for a trade show. If you ever had the pleasure of attending
or working a trade show you’ll understand when
I say they’re hard on healthy people let alone
someone dealing with any kind of illness. I was proud
of myself. I prepared before the show. I made sure I
had snacks for the plane, and healthy snack food for
the show. I took a hot water bottle. This was my saving
grace. Each night when I returned to the room I would
take the hottest bath I could tolerate, Motrin and fill
up my hot water bottle and off to sleep I would go.
It turned out to be a very successful show. The last
two weeks of the month I’ve been coughing a lot.
I have to take it very slow.
I went for my annual eye exam and I found
out I have Cataracts,
a side effect from the prednisone. One more thing I
can add to the list! If your taking prednisone, make
sure you get your eyes checked every year.
August, 2003:
For the August treatment,
I premedicated the night before with 40mg of Prednisone
and 10mg of Zyrtec. Then in the morning I took my regular
20mg of Prednisone and 50mg of Imuran. When I got to
the doctor’s office at 2:30 they gave me Benadryl,
and hooked my IV up with the Remicade and a bag of saline.
When the Benadryl kicked in, I couldn’t keep my
eyes open. Then they started the Remicade very slow.
Fifteen minutes later I started feeling the tightening
of the chest and the overwhelming heat, I was going
into shock again. They turned off the Remicade and started
the saline line. It took about ten minuets before I
felt better. Then they gave me more Solumedrol and started
the treatment an hour later. This time it worked, twelve
drops per minute. Then two hours into the treatment
I stared to get hives, so I got another shot of Solumedrol
and kept on going. At 11:00 pm I was finally done. This
treatment should take three hours, four hours tops.
It took me eight and a half hours. The only reason I
am going through all this is the Remicade has been working
for me. My next treatment is in four weeks.
This has been a tough couple of weeks.
All the pre-medication has made me very moody. If you’ve
ever taken high doses of Prednisone you know what I’m
talking about. The good news is my cough is almost gone,
and I’m starting to feel normal again. No pain.
July, 2003:
This month started out great! On the 4th
of July Chris and I got engaged! I’ve been single
all my life and never thought about marriage. Everyone
was right; it just takes a very special person to change
your beliefs. I never thought I would be this excited
about getting married. The wedding is set for July 4th
2004.
This month my health hasn’t been
that great. The Remicade has been working however I’m
in a fight again with my insurance on getting it approved.
During the first three treatments there was some kind
of paper work mix up with United Health Care. Now they’re
saying it wasn’t approved. If I’ve learned
anything, it’s that no one is going to make this
easy for you. You have to keep fighting for what you
want. The biggest problem with both Polymyositis and
Pulmonary Fibrosis is there is no protocol, so you have
to try different drugs. Insurance companies do not approve
most of them because the drugs were not approved for
that diagnoses. United Health Care always says no the
first time. Then you have to go through hoops before
it’s approved. This time around I had to get four
doctor’s letters stating Remicade was working
for me and I should be on it because all other drugs
have failed. It took four weeks after my scheduled appointment
to get approval by the insurance company. Meanwhile
I was starting to feel awful. My cough came back and
my body was killing me. I am still taking 20mg of Prednisone
and 50mg of Imuran. My list of vitamins has grown.
I’ve been eating better than ever.
I try to have green leafy veggies and a grain of some
kind with every meal. No processed food at all. I’ve
been cooking everything from scratch. I’m still
going to the gym once a week and physical therapy once
a week and I just started pulmonary rehab twice a week.
They’ve helped me a lot with my cough. Here’s
something I didn’t know. If you get into a coughing
attack chew gum it helps. My cough is so bad sometimes
I throw up. Not pleasant!
My house is still under construction because
of the mold. They ripped out all the walls in the guest
bedroom, bathroom and hallway. They also ripped out
all the insulation in the basement and attic. We’re
still not living in it. July 28th
Great News! The insurance company approved me for my
Remicade treatment. I’m taking it on July 30th.
July, 30th 2003
Not great news. I went in for my long
awaited treatment and as I was starting the treatment
I went into anaphylaxis shock—not a very pleasant
experience at all. As it is, I have a hard enough time
breathing and this didn’t help. Thank God, I was
in the doctor’s office getting the treatment.
They had to give me a shot of epinephrine, Solumedrol
and Benadryl then I was sent to the emergency room so
I could be monitored for the next four hours. Now, I
know why this medication is done in the doctor’s
office.
Anaphylaxis is an allergic response that
lowers you blood pressure and dilates blood vessels.
Swelling occurs in the bronchial tissues of the lungs,
causing you to choke or lose consciousness.
The condition occurs when the immune system
creates specific disease-fighting antibodies called
immunoglobulin E or IgE toward a substance—in
my case it was the Remicade. When I was first exposed
to the Remicade my body didn’t react, but it did
produce the antibodies. When I was exposited to it again,
the antibodies sprung into action, releasing large amounts
of a protein called histamine. Histamine causes the
symptoms. I had waited too long in-between treatments
because of the insurance problem.
My symptoms were an overwhelming sense
of heat all over my body. My ears felt like they were
burning off. My chest became very tight and as I was
trying to breath in, nothing was coming in. It was all
very surreal. Once the drugs kicked in I could breath,
however I got chills and felt terrible for the rest
of the day. The worst part was I didn’t get the
Remicade treatment. We’re going to try again next
week.
June, 2003:
Despite the weather we’ve had on
the east coast (rain almost every day) this hasn’t
been a bad month for me at all. As a mater of fact,
it’s turned out great. I went in for my three-month
lung test and my results were the best they’ve
ever been! I believe the lung improvement is due to
the following: I moved out of my house about a month
ago because of the mold; I’ve changed my diet;
and I went from IVIg to Remicade. My Pulmonary Fibrosis
is secondary to Polymyositis. It’s not the same
as Idiopathic Pulmonary Fibrosis; meaning if I can control
the Polymyositis with luck the pulmonary fibrosis could
slow down or even stop before it does too much damage
or before I need a lung transplant. Idiopathic means
cause unknown so it’s more aggressive. I am still
taking 20mg of Prednisone and 50mg of Imuran. My CPK
are 2,296. As far as my new diet is concerned, I’ve
started eating fish for the first time in 28 years.
It’s kind of like greasy tofu! My nutritionist
gave me a card from the Audubon Wildlife Conservation
Society on what fish are well managed. The card also
points out fish that have been over fished or have problems.
Mentally I find this helpful.
May, 2003:
I traveled to Italy on business. When
I returned I went in for my second treatment of Remicade
on May 6th 2003. I’m still feeling pretty good.
I’ve been going to physical therapy, the gym and
I went to acupuncture twice. May 9th I had my house
tested for mold and they found a lot of different types.
I did some research and Chris and I decided to move
out until the problem was fixed.
I had my first appointment with a Naturopathic
physician, Dr. Bronner Handwerger. He works with Dr.
Peter D’Adamo’s “Eat Right for your
Type.” I wanted to make sure being a vegan doesn’t
have anything to do with my health problems. I found
out my blood type is A and A’s should be vegetarians.
Thank God, I’ve been a vegetarian for 28 years.
Next month I’m going to a nutritionist to help
me put a diet together. My CPKs went up to 2,135 so
I had increase on the Prednisone to 20mg still on 50mg
of Imuran and the Remicade.
April, 2003:
I’ve stopped taking IVIg—it
hasn’t been working. My CPKs are getting higher
and higher each month. I had my first treatment of Remicade
on April 22, 2003. This is how it works. You take it
intravenously at the doctor’s office and it takes
around three hours. Next treatment is in two weeks and
then in four weeks, then in six, then every eight weeks.
After my treatment I didn’t feel that different.
It took about three days for it to kick in. Then I felt
great. No muscle pain, no weakness. This is great! I
am still taking 10mg of Prednisolone and 50mg of Imuran.
My CPKs are 1,237 they should start to go down. Still
going to physical therapy once a week—once a week
at the gym and twice a month at the acupuncture.
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