| Myositis "Stories Page" |
| Stories from others affected with these diseases. This page and more is for you! |
| These pages to be used for all to share their experiences and stories with others. We all have something to share with others. If you would prefer not to have your name with your story that is okay, just tell me and I will omit it. How about handy hints for those newly diagnosed? This page is for YOU. |
 |
| |
 |
| |
 |
| |
 |
I owe many thanks to my
Daughter Zia who bails me
out every time I mess up
on updating this web site,
which is quite often.
What are Mothers for!
Daughter Zia who bails me
out every time I mess up
on updating this web site,
which is quite often.
What are Mothers for!
My Myositis Story
Phil Bousley
I had been in pretty good health until around 60
years of age. In 2000 I began having trouble
swallowing. It was intermittent and very
frustrating. My family practice doctor sent me to
have a barium swallowing test. The radiologist
asked me why I was having the test done.
Seemed like a stupid question; but I told him, “I’
m having difficulty swallowing.” He didn’t seem
too interested in me or the test. After the test he
said, “I can’t find anything wrong with your
swallowing. I think it is all in your head.” This
was not a very professional thing to say to a
patient.
Then my doctor sent me to a Gastroenterologist
to have a tube put down my throat to see if he
could find any abnormalities. He was nicer but
said he could find nothing wrong. So I continued
to have problems with swallowing. I learned that
if I held my chin down when swallowing, it was
better.
I also noticed that I was having pain in my thighs
and it was difficult to climb stairs and get up from
the floor without holding on to something. I
thought it was part of getting old.
In 2003 I developed severe headaches with pain
so bad it caused projectile vomiting. Even the
pain medicine came back up. After 3 days of this,
I woke up one morning with double vision and a
droopy eye. My father died of a stroke and I
assumed this was also the result of a stroke. The
emergency room doctor ordered a cat scan of
the head. He returned and said, “Phil, I don’t
know any way to say this but you have a huge
macroadenoma of the pituitary. I’ve called your
family doctor and he is on his way in. My doctor
came in and looked at me, turned and walked
over to my wife, gave her a hug, and said, “I’m so
sorry.” I realized this was not good. They sent
me by ambulance to the medical center in
Indianapolis to the neurology intensive care unit
at St. Vincent’s Hospital. The doctors told my
wife that I could die if the tumor had a bleed. I
knew nothing of this. They put me on massive
doses of steroids for 3 days to get the swelling
down before they did the surgery. The surgery
was rough; but I did fine. At that time the doctors
looked at my medicines and noticed that I was on
Crestor, the Statin drug for cholesterol. They
told me to discontinue the drug. I did.
After sending me home from the hospital they
put me on 100mg of Prednisone for 2 –3 weeks
and then reduced it to 50mg for an additional 3
weeks. I actually felt better than I had before the
surgery. I told my wife it was easier to climb the
stairs into the house from the den.
I was going to an endocrinologist because all of
my hormones were messed up due to the tumor
on the pituitary. The endocrinologist told me to
start taking the Crestor again since my
cholesterol was elevated. I told him the doctors
at the medical center said to discontinue it and
he said that dosage wouldn’t hurt me.
My muscle pain increased again.
To back track. I had coronary bypass surgery in
1999 at the age of 59. The surgery went well. My
cardiologist was not pleased with my cholesterol
and put me on Lipitor, a Statin drug. I took it for
about a year and developed a lot of muscle pain
in my legs, back and shoulders. My CK enzyme
was also elevated. My Lipitor was stopped and I
was put on Zocor. The same thing happened.
Again the drug was continued after my CK level
elevated and my pain returned.
I was placed on Baycol for a short time and again
it was necessary to stop. I was tried on some
non Statin drugs with little success.
I don’t remember which Statin drug I was taking
at the time, but my CK level was checked
annually. On one of these checkups, my CK
level was elevated and so was the CKMB. The
CKMB portion of CK is supposedly specific for
heart damage. I was placed in coronary care
overnight. My Troponin was negative indicating
that I did not have a heart attack.
The last Statin drug I took was Crestor. Again
the pain came back worse than ever before. By
this time I was having difficulty swallowing,
difficulty getting out of chairs and car, falling
frequently, difficulty climbing stairs, and difficulty
getting out of bed and up from a sitting position
on the floor.
I was a clinical microbiologist at the local
community hospital for 40 years. All this
happened while I was employed at the hospital.
One day my family physician saw me walking in
the hall and I had what appeared to be foot drop.
I was walking along the wall and holding on to
the rail. He asked what was wrong with me. I
told him about my pain, symptoms, and elevated
CK level. By this time my CK was 1000. He told
me to get an Aldolase blood test and if it were
positive, I could have polymyositis. The Aldolase
was elevated and he sent me to a
Rheumatologist in Indianapolis.
The Rheumatologist ordered a batter of blood
tests which included several antibody tests. The
tests all came back negative. The
Rheumatologist said that since the antibody test
were negative and my CK level was “only 1000”
he didn’t think it was polymyositis. But he
decided to do a muscle biopsy to be sure.
The muscle biopsy was done on my left thigh.
About 10 days later I received a call from the
Rheumatologist’s nurse. She said, “Your muscle
biopsy came back and you have polymyositis.
The doctor wants you to take 40mg of
Prednisone daily. Where do you want the
prescription called?” I told her of my pharmacy
and asked when I could see the doctor. She said
for me to wait. Finally she came back on the
phone and said he could see me in a few weeks.
When I did get to see him he showed me the
report. The diagnosis was “Polymyositis-
severe”. The Rheumatologist said that the Statin
drugs were the trigger for my polymyositis. The
drugs didn’t cause the disease; but brought it to
the surface. I am not convinced that the drugs
didn’t CAUSE my PM.
Foolishly I was happy. I thought I could take
some pills and cure this thing. Wrong! The
rheumy said he would have me in remission in
two years. It has been a year and nine months
and I am not in or close to remission. But I have
good days and hopes of making it to remission.
My friends on the support group websites have
been a blessing to me. I have learned more from
them than from the doctors or publications
Phil is our Comedian, he has also been trying out
for the most handsome.
Phil now needs a knee replacement but does not
attribute it to the disease.
Phil Bousley
I had been in pretty good health until around 60
years of age. In 2000 I began having trouble
swallowing. It was intermittent and very
frustrating. My family practice doctor sent me to
have a barium swallowing test. The radiologist
asked me why I was having the test done.
Seemed like a stupid question; but I told him, “I’
m having difficulty swallowing.” He didn’t seem
too interested in me or the test. After the test he
said, “I can’t find anything wrong with your
swallowing. I think it is all in your head.” This
was not a very professional thing to say to a
patient.
Then my doctor sent me to a Gastroenterologist
to have a tube put down my throat to see if he
could find any abnormalities. He was nicer but
said he could find nothing wrong. So I continued
to have problems with swallowing. I learned that
if I held my chin down when swallowing, it was
better.
I also noticed that I was having pain in my thighs
and it was difficult to climb stairs and get up from
the floor without holding on to something. I
thought it was part of getting old.
In 2003 I developed severe headaches with pain
so bad it caused projectile vomiting. Even the
pain medicine came back up. After 3 days of this,
I woke up one morning with double vision and a
droopy eye. My father died of a stroke and I
assumed this was also the result of a stroke. The
emergency room doctor ordered a cat scan of
the head. He returned and said, “Phil, I don’t
know any way to say this but you have a huge
macroadenoma of the pituitary. I’ve called your
family doctor and he is on his way in. My doctor
came in and looked at me, turned and walked
over to my wife, gave her a hug, and said, “I’m so
sorry.” I realized this was not good. They sent
me by ambulance to the medical center in
Indianapolis to the neurology intensive care unit
at St. Vincent’s Hospital. The doctors told my
wife that I could die if the tumor had a bleed. I
knew nothing of this. They put me on massive
doses of steroids for 3 days to get the swelling
down before they did the surgery. The surgery
was rough; but I did fine. At that time the doctors
looked at my medicines and noticed that I was on
Crestor, the Statin drug for cholesterol. They
told me to discontinue the drug. I did.
After sending me home from the hospital they
put me on 100mg of Prednisone for 2 –3 weeks
and then reduced it to 50mg for an additional 3
weeks. I actually felt better than I had before the
surgery. I told my wife it was easier to climb the
stairs into the house from the den.
I was going to an endocrinologist because all of
my hormones were messed up due to the tumor
on the pituitary. The endocrinologist told me to
start taking the Crestor again since my
cholesterol was elevated. I told him the doctors
at the medical center said to discontinue it and
he said that dosage wouldn’t hurt me.
My muscle pain increased again.
To back track. I had coronary bypass surgery in
1999 at the age of 59. The surgery went well. My
cardiologist was not pleased with my cholesterol
and put me on Lipitor, a Statin drug. I took it for
about a year and developed a lot of muscle pain
in my legs, back and shoulders. My CK enzyme
was also elevated. My Lipitor was stopped and I
was put on Zocor. The same thing happened.
Again the drug was continued after my CK level
elevated and my pain returned.
I was placed on Baycol for a short time and again
it was necessary to stop. I was tried on some
non Statin drugs with little success.
I don’t remember which Statin drug I was taking
at the time, but my CK level was checked
annually. On one of these checkups, my CK
level was elevated and so was the CKMB. The
CKMB portion of CK is supposedly specific for
heart damage. I was placed in coronary care
overnight. My Troponin was negative indicating
that I did not have a heart attack.
The last Statin drug I took was Crestor. Again
the pain came back worse than ever before. By
this time I was having difficulty swallowing,
difficulty getting out of chairs and car, falling
frequently, difficulty climbing stairs, and difficulty
getting out of bed and up from a sitting position
on the floor.
I was a clinical microbiologist at the local
community hospital for 40 years. All this
happened while I was employed at the hospital.
One day my family physician saw me walking in
the hall and I had what appeared to be foot drop.
I was walking along the wall and holding on to
the rail. He asked what was wrong with me. I
told him about my pain, symptoms, and elevated
CK level. By this time my CK was 1000. He told
me to get an Aldolase blood test and if it were
positive, I could have polymyositis. The Aldolase
was elevated and he sent me to a
Rheumatologist in Indianapolis.
The Rheumatologist ordered a batter of blood
tests which included several antibody tests. The
tests all came back negative. The
Rheumatologist said that since the antibody test
were negative and my CK level was “only 1000”
he didn’t think it was polymyositis. But he
decided to do a muscle biopsy to be sure.
The muscle biopsy was done on my left thigh.
About 10 days later I received a call from the
Rheumatologist’s nurse. She said, “Your muscle
biopsy came back and you have polymyositis.
The doctor wants you to take 40mg of
Prednisone daily. Where do you want the
prescription called?” I told her of my pharmacy
and asked when I could see the doctor. She said
for me to wait. Finally she came back on the
phone and said he could see me in a few weeks.
When I did get to see him he showed me the
report. The diagnosis was “Polymyositis-
severe”. The Rheumatologist said that the Statin
drugs were the trigger for my polymyositis. The
drugs didn’t cause the disease; but brought it to
the surface. I am not convinced that the drugs
didn’t CAUSE my PM.
Foolishly I was happy. I thought I could take
some pills and cure this thing. Wrong! The
rheumy said he would have me in remission in
two years. It has been a year and nine months
and I am not in or close to remission. But I have
good days and hopes of making it to remission.
My friends on the support group websites have
been a blessing to me. I have learned more from
them than from the doctors or publications
Phil is our Comedian, he has also been trying out
for the most handsome.
Phil now needs a knee replacement but does not
attribute it to the disease.
My journey with Myositis by Fay Stancliff
Date: Sat, 14 Apr. 2007 19:09:24 +0000
I then began complaining about a burning
sensation in my lower legs, so bad that it
would wake me from a sound sleep, this was in
December 2003. I took this medication for 2
months and started feeling a weakness in both
legs just walking and then stairs became a real
challenge. By June of 2004 I could barely get
around and went to my primary Dr. for his ER,
where they thought it could be Miastiva Gravis
and wanted to try a medication that if it were
this I would get up and be able to walk within
10 minutes, not so, when the blood work came
back showing my CPK was at 4400.
I was admitted and started on liquid
Prednisone by IV, slowly the CPK came down to
2200 and a muscle biopsy was advised. This
was done on June 23, after three weeks I was
discharged to wait for the biopsy results. It
took another 3 weeks of waiting when PM was
confirmed.
I continued with the same Rheumatologist and
in August, 04 he added Methotrextate, 7.5 mg.
I had taken just 2 doses and on September 7,
2004 I developed pneumonia, which is a side
affect of the Methotrextate and anyone with
lung involvement should never take this, of
course I relied on my doctor and thought he
was aware of my past medical problems and
the ILD but either he forgot or didn't know I
should not have been on it at all. So on
September 7, 2004 I was rushed to the hospital
in respiratory failure
I was placed on a ventilator and had to be
shocked back! For an entire week my husband
was told I would not make it through the night,
he was told to call our family together and if he
believed in God to pray because all my organs
were shutting down. At one point on the
second day the doctor said that there was one
drug he could use that would pump blood back
to the heart and brain and the only draw
back was the side affect of this drug would
cause me to loose both arms and legs.
My husband said he looked him straight in the
eye and told him you will not use that drug on
my wife and if you try you will have to get
passed me first. I will pull the plug myself if it
comes to that. God must have had other plans
for me, I went to the other side and he sent me
back! I was in the first hospital for 4 weeks and
transferred to another hospital where they
were more successful in weaning a patient off
the vent.
I was transferred on September 27. They told
my husband I would be there at least until
Christmas, fooled them again! After my first
week I was off the vent but still needed
oxygen 24/7, I had a trek, feeding tube, and
had lost 26 pounds of muscle mass with the
onset of Polymyositis.
After another 3 weeks of PT and speech
therapy for swallowing problems I was
released on October 27, 2004. I came home
with the feeding tube still in place, home
health care, a walker and a wonderful
Husband who learned all that was needed to
know to be my personal nurse. He learned to
crush the Meds and inject them into the
feeding tube, did all the cooking, cleaning and
total care of me, I could barely hold a glass and
could barely hold my head up, he had to help
me in and out of bed and turn me over when I
needed turning.
The smallest things I could no longer do. Like
dressing and showering myself. He had to do
all that and more. He even learned to color my
hair and blow dry it. I hated what I had become.
We retired to Florida in 1998 with such hopes
and dreams and now I felt like life was no
longer going to be what it was before.
I lashed out at God and said many times, what
did I do to deserve this. "Why me"?
It took several months before I could get in or
out of bed and going to the doctors constantly
made me feel even more helpless! Still my
Husband never complained and I am certain
there were times he wanted to throw in the
towel but he finally got through to me and said
on one of my occasions of self pity, "look
where you were, you are improving" and I
would come back with " but I cannot stand
watching you do everything I feel so useless".
He replied, "you did all this for our first 39
years and now its my turn"
By August 2005 I decided maybe it was time for
a different doctor and researched until I found
a Neurologist who seemed more familiar with
Myositis and made the first appointment in
September 2005, what a blessing that was, he
said we needed to get more aggressive with
this disease to turn it around, he changed the
Prednisone to 60 mg. My CPK had jumped up
to 1900 at that point. He then added 50
mg of Imuran and for awhile I was doing fairly
well until I started with increased muscle
weakness in the arms and legs.
He was baffled and did an EEG to see just how
bad the muscles were, but this did not show
any nerve damage and it was decided that I
had developed a steroid Myopathy, which
meant the muscles actually got weaker with
the increased Prednisone. I was quickly
reduced till I hit 20 mg. and the Imuran was
increased to 200 mg. You could almost see a
change overnight as the Prednisone was
decreased.
I now have my life back, not what is was before
PM but after taking inventory of where I was in
2004 and where I got to by Sept. 2005 I
realized how truly blessed I had been, God
must have had a plan and I just needed to
reflect and ask for his guidance.
I no longer take anything for granted and take
one day at a time and thank God for each new
day. It will be three years on June 23, 2007 that
this journey began. And I can once again enjoy
all the things I thought were lost forever, like
going to church or out to dinner, or going to
have my hair done and shopping. I can now
drive, not alone for fear of falling, which I have
done several times. I broke my left arm in
August 2005, so I don't chance that yet. I can
care for myself totally, get in and out of bed,
exercise on my stationery bike, lift light
weights, I can once again turn over in bed and
have much of my life the way it was.
On March 4, 2007 all the oxygen equipment
was removed from my home, the feeding tube
came out in January 05.
September 2006 we went on our first cruise,
one that had been planned for 2004. We
celebrated our 40th. Wedding Anniversary. We
are going on another cruise May 4th. We will
be married 42 years on July 3, 07.
Life is good, it taught me what really counts
and it really shows who cares, I've lost some
friends along the way but now realize that they
were not really friends after all.
I tell this in the hopes that at least someone
else might be helped and will know that there
is a light at the end of the tunnel. You just
have to be patient and make yourself believe
that you too will over come this.
My firm belief now is and I say it everyday "If
GOD BRINGS YOU TO IT, HE WILL BRING YOU
THRU IT!
Thanks for listening and I hope I've at least
helped someone to be strong and focused and
you will climb that mountain as I have done!
Fay Stancliff
Hello there, in answer to your request for any
updates on my story, I just wanted to add this.
IT HAS NOW BEEN THREE AND A HALF YEARS
SINCE MY JOURNEY WITH MYOSITIS STARTED
AND THANKFULLY I HAVE MADE GREAT
STRIDES ALONG THIS ROAD. I AM NOW DOWN
TO 7.5MG OF PREDNISONE AND AM TO REDUCE
NEXT WEEK TO 5.0 THEN HOPEFULLY IF ALL
STAYS ON COURSE IN JANUARY I WILL START
REDUCING THE IMURAN. THE NEUROLOGIST
WAS VERY PLEASED WHEN I SAW HIM IN
OCTOBER, MY INCREASED MUSCLE STRENGTH
OVERALL REALLY SURPRISED HIM! HE STILL
SAYS THERE IS A GOOD CHANCE THAT I MIGHT
BE ONE OF THOSE PATIENTS THAT THIS
DISEASE BURNS ITSELF OUT.I STILL CONTINUE
TO HAVE SOME WEAKNESS IN MY LEGS BUT
THIS COULD BE RESULTS OF PERMANENT
MUSCLE DAMAGE. AND ALL I CAN DO IS
CONTINUE TO BUILD WHAT MUSCLE WAS LEFT
AFTER THE INITIAL ONSET OF PM. WHEN I SAW
THE PULOMOGIST THE END OF MAY AND HE
DID THE USUAL PULMONARY FUNCTION TEST
AND CHEST X-RAY, HE WAS AMAZED AT MUCH I
HAVE IMPROVED, MY LUNG CAPACITY IS NOW
AT 88% AND ALL THE INFLAMMATION FROM THE
FIBROSIS IS COMPLETELY CLEARED UP. .
WE'VE BEEN FORTUNATE TO BE ABLE TO TAKE
ANOTHER CRUISE THIS PAST MAY AND A SIDE
TRIP TO PENSACOLA FLORIDA IN JUNE. TO
CELEBRATE OUR 42ND.WEDDING
ANNIVERSARY. ONCE AGAIN I MUST SAY LIFE IS
GOOD, I LIVE EACH DAY TO THE FULLEST AND
HAVE LEARNED TO STOP ASKING "WHY ME",
ONLY GOD HAS THAT ANSWER BUT IT SURELY
HAS TAUGHT ME TO BE THANKFUL FOR ALL
THAT I HAVE AND TO CHERISH EACH
MOMENT.FAY STANCLIFF/PM/ILDFLORIDA
Date: Sat, 14 Apr. 2007 19:09:24 +0000
I then began complaining about a burning
sensation in my lower legs, so bad that it
would wake me from a sound sleep, this was in
December 2003. I took this medication for 2
months and started feeling a weakness in both
legs just walking and then stairs became a real
challenge. By June of 2004 I could barely get
around and went to my primary Dr. for his ER,
where they thought it could be Miastiva Gravis
and wanted to try a medication that if it were
this I would get up and be able to walk within
10 minutes, not so, when the blood work came
back showing my CPK was at 4400.
I was admitted and started on liquid
Prednisone by IV, slowly the CPK came down to
2200 and a muscle biopsy was advised. This
was done on June 23, after three weeks I was
discharged to wait for the biopsy results. It
took another 3 weeks of waiting when PM was
confirmed.
I continued with the same Rheumatologist and
in August, 04 he added Methotrextate, 7.5 mg.
I had taken just 2 doses and on September 7,
2004 I developed pneumonia, which is a side
affect of the Methotrextate and anyone with
lung involvement should never take this, of
course I relied on my doctor and thought he
was aware of my past medical problems and
the ILD but either he forgot or didn't know I
should not have been on it at all. So on
September 7, 2004 I was rushed to the hospital
in respiratory failure
I was placed on a ventilator and had to be
shocked back! For an entire week my husband
was told I would not make it through the night,
he was told to call our family together and if he
believed in God to pray because all my organs
were shutting down. At one point on the
second day the doctor said that there was one
drug he could use that would pump blood back
to the heart and brain and the only draw
back was the side affect of this drug would
cause me to loose both arms and legs.
My husband said he looked him straight in the
eye and told him you will not use that drug on
my wife and if you try you will have to get
passed me first. I will pull the plug myself if it
comes to that. God must have had other plans
for me, I went to the other side and he sent me
back! I was in the first hospital for 4 weeks and
transferred to another hospital where they
were more successful in weaning a patient off
the vent.
I was transferred on September 27. They told
my husband I would be there at least until
Christmas, fooled them again! After my first
week I was off the vent but still needed
oxygen 24/7, I had a trek, feeding tube, and
had lost 26 pounds of muscle mass with the
onset of Polymyositis.
After another 3 weeks of PT and speech
therapy for swallowing problems I was
released on October 27, 2004. I came home
with the feeding tube still in place, home
health care, a walker and a wonderful
Husband who learned all that was needed to
know to be my personal nurse. He learned to
crush the Meds and inject them into the
feeding tube, did all the cooking, cleaning and
total care of me, I could barely hold a glass and
could barely hold my head up, he had to help
me in and out of bed and turn me over when I
needed turning.
The smallest things I could no longer do. Like
dressing and showering myself. He had to do
all that and more. He even learned to color my
hair and blow dry it. I hated what I had become.
We retired to Florida in 1998 with such hopes
and dreams and now I felt like life was no
longer going to be what it was before.
I lashed out at God and said many times, what
did I do to deserve this. "Why me"?
It took several months before I could get in or
out of bed and going to the doctors constantly
made me feel even more helpless! Still my
Husband never complained and I am certain
there were times he wanted to throw in the
towel but he finally got through to me and said
on one of my occasions of self pity, "look
where you were, you are improving" and I
would come back with " but I cannot stand
watching you do everything I feel so useless".
He replied, "you did all this for our first 39
years and now its my turn"
By August 2005 I decided maybe it was time for
a different doctor and researched until I found
a Neurologist who seemed more familiar with
Myositis and made the first appointment in
September 2005, what a blessing that was, he
said we needed to get more aggressive with
this disease to turn it around, he changed the
Prednisone to 60 mg. My CPK had jumped up
to 1900 at that point. He then added 50
mg of Imuran and for awhile I was doing fairly
well until I started with increased muscle
weakness in the arms and legs.
He was baffled and did an EEG to see just how
bad the muscles were, but this did not show
any nerve damage and it was decided that I
had developed a steroid Myopathy, which
meant the muscles actually got weaker with
the increased Prednisone. I was quickly
reduced till I hit 20 mg. and the Imuran was
increased to 200 mg. You could almost see a
change overnight as the Prednisone was
decreased.
I now have my life back, not what is was before
PM but after taking inventory of where I was in
2004 and where I got to by Sept. 2005 I
realized how truly blessed I had been, God
must have had a plan and I just needed to
reflect and ask for his guidance.
I no longer take anything for granted and take
one day at a time and thank God for each new
day. It will be three years on June 23, 2007 that
this journey began. And I can once again enjoy
all the things I thought were lost forever, like
going to church or out to dinner, or going to
have my hair done and shopping. I can now
drive, not alone for fear of falling, which I have
done several times. I broke my left arm in
August 2005, so I don't chance that yet. I can
care for myself totally, get in and out of bed,
exercise on my stationery bike, lift light
weights, I can once again turn over in bed and
have much of my life the way it was.
On March 4, 2007 all the oxygen equipment
was removed from my home, the feeding tube
came out in January 05.
September 2006 we went on our first cruise,
one that had been planned for 2004. We
celebrated our 40th. Wedding Anniversary. We
are going on another cruise May 4th. We will
be married 42 years on July 3, 07.
Life is good, it taught me what really counts
and it really shows who cares, I've lost some
friends along the way but now realize that they
were not really friends after all.
I tell this in the hopes that at least someone
else might be helped and will know that there
is a light at the end of the tunnel. You just
have to be patient and make yourself believe
that you too will over come this.
My firm belief now is and I say it everyday "If
GOD BRINGS YOU TO IT, HE WILL BRING YOU
THRU IT!
Thanks for listening and I hope I've at least
helped someone to be strong and focused and
you will climb that mountain as I have done!
Fay Stancliff
Hello there, in answer to your request for any
updates on my story, I just wanted to add this.
IT HAS NOW BEEN THREE AND A HALF YEARS
SINCE MY JOURNEY WITH MYOSITIS STARTED
AND THANKFULLY I HAVE MADE GREAT
STRIDES ALONG THIS ROAD. I AM NOW DOWN
TO 7.5MG OF PREDNISONE AND AM TO REDUCE
NEXT WEEK TO 5.0 THEN HOPEFULLY IF ALL
STAYS ON COURSE IN JANUARY I WILL START
REDUCING THE IMURAN. THE NEUROLOGIST
WAS VERY PLEASED WHEN I SAW HIM IN
OCTOBER, MY INCREASED MUSCLE STRENGTH
OVERALL REALLY SURPRISED HIM! HE STILL
SAYS THERE IS A GOOD CHANCE THAT I MIGHT
BE ONE OF THOSE PATIENTS THAT THIS
DISEASE BURNS ITSELF OUT.I STILL CONTINUE
TO HAVE SOME WEAKNESS IN MY LEGS BUT
THIS COULD BE RESULTS OF PERMANENT
MUSCLE DAMAGE. AND ALL I CAN DO IS
CONTINUE TO BUILD WHAT MUSCLE WAS LEFT
AFTER THE INITIAL ONSET OF PM. WHEN I SAW
THE PULOMOGIST THE END OF MAY AND HE
DID THE USUAL PULMONARY FUNCTION TEST
AND CHEST X-RAY, HE WAS AMAZED AT MUCH I
HAVE IMPROVED, MY LUNG CAPACITY IS NOW
AT 88% AND ALL THE INFLAMMATION FROM THE
FIBROSIS IS COMPLETELY CLEARED UP. .
WE'VE BEEN FORTUNATE TO BE ABLE TO TAKE
ANOTHER CRUISE THIS PAST MAY AND A SIDE
TRIP TO PENSACOLA FLORIDA IN JUNE. TO
CELEBRATE OUR 42ND.WEDDING
ANNIVERSARY. ONCE AGAIN I MUST SAY LIFE IS
GOOD, I LIVE EACH DAY TO THE FULLEST AND
HAVE LEARNED TO STOP ASKING "WHY ME",
ONLY GOD HAS THAT ANSWER BUT IT SURELY
HAS TAUGHT ME TO BE THANKFUL FOR ALL
THAT I HAVE AND TO CHERISH EACH
MOMENT.FAY STANCLIFF/PM/ILDFLORIDA
Here's MY "Couldn't Get Up" story (better or
worse, you decide):
So with this wretched cast on, I have been doing
the best I can with sponge baths....NOT particularly
helpful, or easy.... JJ bought this Aqua Shield
thingy which currently still is too painful to put on,
plus it's too painful yet to let my arm just hang
without the support of either the sling or my other
arm.
So we decided to go the bath route yesterday,
with a big kitchen trash bag tucked up and around.
Couldn't get the water too deep, for fear of
splashing cast....so I had a good bit of time to
stare down at my lumpy, bumpy, bruised body,
hairy legs (if I had the use of both hands, I could
probably braid them at this point...), and I did the
best I could with the one hand -- I just couldn't
bring myself to let JJ see how horrid the whole
scene was.....so I'm trying to wash my hair, rinsing
with the by-now-filthy water (sorry, too much info,
but it just underscores my plight)... finaly needed
to call for rescue. But he's giving me the privacy I
asked for, is playing with the kids, doesn't hear me
hollering, so I have to repeatedly bang on the wall
to get his attention. So finally he's there, and I
have to ask for his help to just get up on my knees
and let him rinse me off with the shower-thingy..
had to let the water out, so I was freezing, then
just couldn't get me up and around. I started
crying, feeling ashamed and weary, tried to get me
up from behind, like you Zara, it killed my arm, but
at last after about 5 minutes of maneuvering my
injured Orca-ness, we got me up.
I've been feeling pretty crappy today tired of the
whole thing. Still can't "hear" the
"this too shall pass" message. Hopefully, I'll see
some improvement soon....you
should see my fingers, they look like sausage
links.
Anyway, shouldn't over-do with one of the few
things left working (my right typing hand!), so I ask
that you please add me to your list of sufferers
who need a couple of extra prayers sent her way....
We have dedicated the saying "Help I've fallen
and can't get up" to all of us.
After much hemming and hawing, and inquiries
from you, ordered myself a very simple bracelet
with Dx: Dermatomyositis and Rx: Prednisone a
couple of months back. Well, when I was taken to
the ER for my broken arm two blessed weeks ago,
they never once looked at the bracelet....as I
suppose since I was conscious and coherent
(albeit crying like a banchee) I could tell them what
was what...So when they started with the old "is
there any medical history we should be aware
of?", I actually laughed for a second between my
tears, and basically turned the floor over to JJ. He
took a deep breath, and said, "Okay, well first of
all, she has Dermatomyositis..." and they're like
Dermato-what? What's that? After trying to explain
to them as efficiently as possible my condition(s), I
interjected that I would likely need a stress dose
of Prednisone for the trauma to my body, and they
sat there like the Three Stooges.
I was able to explain about it, and they finally
found someone who rather non-commitally gave
me the extra Steroids. So my story just
underscores the whole urgency of getting our
message out there. Not only was it frightening to
be treated when they didn't know anything about
this disease, can you imagine what might have
happened if I hadn't been conscious? So my point
about the bracelet too, is that I don't know that the
info provided would have helped me if I had
needed treatment swiftly....BUT, maybe this is part
of the bigger plan to help spread the word. This
incident represented a full half of my e-mails to
Oprah. It's a compelling, but ultimately scary
scenario.
Looking forward to maybe getting some feedback
this week.
Beth as you may have guessed is our Klutz, she
has more stories to tell on that score. She also
tried to walk over a hole in the ground instead of
around it.
worse, you decide):
So with this wretched cast on, I have been doing
the best I can with sponge baths....NOT particularly
helpful, or easy.... JJ bought this Aqua Shield
thingy which currently still is too painful to put on,
plus it's too painful yet to let my arm just hang
without the support of either the sling or my other
arm.
So we decided to go the bath route yesterday,
with a big kitchen trash bag tucked up and around.
Couldn't get the water too deep, for fear of
splashing cast....so I had a good bit of time to
stare down at my lumpy, bumpy, bruised body,
hairy legs (if I had the use of both hands, I could
probably braid them at this point...), and I did the
best I could with the one hand -- I just couldn't
bring myself to let JJ see how horrid the whole
scene was.....so I'm trying to wash my hair, rinsing
with the by-now-filthy water (sorry, too much info,
but it just underscores my plight)... finaly needed
to call for rescue. But he's giving me the privacy I
asked for, is playing with the kids, doesn't hear me
hollering, so I have to repeatedly bang on the wall
to get his attention. So finally he's there, and I
have to ask for his help to just get up on my knees
and let him rinse me off with the shower-thingy..
had to let the water out, so I was freezing, then
just couldn't get me up and around. I started
crying, feeling ashamed and weary, tried to get me
up from behind, like you Zara, it killed my arm, but
at last after about 5 minutes of maneuvering my
injured Orca-ness, we got me up.
I've been feeling pretty crappy today tired of the
whole thing. Still can't "hear" the
"this too shall pass" message. Hopefully, I'll see
some improvement soon....you
should see my fingers, they look like sausage
links.
Anyway, shouldn't over-do with one of the few
things left working (my right typing hand!), so I ask
that you please add me to your list of sufferers
who need a couple of extra prayers sent her way....
We have dedicated the saying "Help I've fallen
and can't get up" to all of us.
After much hemming and hawing, and inquiries
from you, ordered myself a very simple bracelet
with Dx: Dermatomyositis and Rx: Prednisone a
couple of months back. Well, when I was taken to
the ER for my broken arm two blessed weeks ago,
they never once looked at the bracelet....as I
suppose since I was conscious and coherent
(albeit crying like a banchee) I could tell them what
was what...So when they started with the old "is
there any medical history we should be aware
of?", I actually laughed for a second between my
tears, and basically turned the floor over to JJ. He
took a deep breath, and said, "Okay, well first of
all, she has Dermatomyositis..." and they're like
Dermato-what? What's that? After trying to explain
to them as efficiently as possible my condition(s), I
interjected that I would likely need a stress dose
of Prednisone for the trauma to my body, and they
sat there like the Three Stooges.
I was able to explain about it, and they finally
found someone who rather non-commitally gave
me the extra Steroids. So my story just
underscores the whole urgency of getting our
message out there. Not only was it frightening to
be treated when they didn't know anything about
this disease, can you imagine what might have
happened if I hadn't been conscious? So my point
about the bracelet too, is that I don't know that the
info provided would have helped me if I had
needed treatment swiftly....BUT, maybe this is part
of the bigger plan to help spread the word. This
incident represented a full half of my e-mails to
Oprah. It's a compelling, but ultimately scary
scenario.
Looking forward to maybe getting some feedback
this week.
Beth as you may have guessed is our Klutz, she
has more stories to tell on that score. She also
tried to walk over a hole in the ground instead of
around it.
I am 26yrs old and from Texas
I was diagnosed with DM in December 2006. I
started having symptoms in October:
skin rash on hands and sore cuticles. I thought I
had a fungal infection and tried to treat it but it
never went away.
In November, I started having body aches and
was extremely tired all the time. I had been very
active before, running 3days a week and then
all of a sudden, moving was difficult. Everyone
thought I had the flu because I had body aches,
fatigue, and a low grade fever. I wasn't
convinced because my body aches seemed to
get worse and never went away. Then I noticed,
the rash was also on my face, chest, and upper
arms.
Normal activities like getting dressed, getting
out of bed, taking a shower all seemed to take
so much effort. I went to the doctor and she
said that I had a sinus infection that turned into
a bacterial infection. She gave me a
prescription and I started crying. She asked me
what was wrong and I said, "I just want to know
what's wrong with me." Needless to say, I didn't
think her diagnosis was the root problem.
I went home and got on the Internet and typed
in my symptoms. (skin rash and muscle
weakness) I found all this info on DM and was
both amazed and frightened.
All the symptoms described seemed to be
exactly what I was experiencing. I called the
doctor the next morning and she said she didn't
want to jump to that conclusion and she didn't
think I had DM. I wanted to believe what she
said but I was unsure. I did get the prescription
filled but of course, the pills did nothing to help
my pain.
A few weeks later, I became so weak that I
couldn't release the emergency brake in my car.
By this point, I was convinced I had DM. I flew to
Dallas to see a Dermatologist and have blood
work done. The dermatologist took one look at
my rash and was certain it was DM but needed
to see the results of my blood work. The
blood work confirmed that I had an elevated
CPK level of 2070. I was so happy to finally get
some answers!! They started me on 40 mg of
Prednisone but I didn't feel very different so I
moved up to 60 mg. I am now down to
50mg/40mg alternating days and feeling much
better. Our support group here in Houston is
also doing a 12 week study to see how a diet
high in omega 3 fatty acids and antioxidants
affect mood and inflammation. I'm on my 7th
week now. I eat at least 5 servings of fish a
week and lots of fruits and veggies. I stay
away from lots of sugars and fats and I feel
great. I try to eat all natural foods so I live in
Whole Foods. Its costs more but it's worth it.
I haven't experienced any weight gain from the
Prednisone and
it's probably because of this diet. I had more
blood work done a few weeks ago and this time
my CPK level is normal.
The doctor said that my strength has improved
dramatically because the last time it was 3 over
5 but now it's 5 over 5.
She said the last time she saw me, my strength
was like that of an old person but now it's what
it should be. YEA!!!
It has been quite a battle but I have learned so
much and met so many wonderful people.I try to
focus on the good and not the bad and that's
what keeps me going. I'm not at the full strength
I had before but I don't have any problems
releasing emergency brakes these days so I'm
pleased. I can get dressed and put on socks
without crying which is a blessing.
I hope that this encourages you if you're having
a difficult time. I look forward to talking with you
and I'm so thankful that we can all be here for
one another. Don't give up,
I was diagnosed with DM in December 2006. I
started having symptoms in October:
skin rash on hands and sore cuticles. I thought I
had a fungal infection and tried to treat it but it
never went away.
In November, I started having body aches and
was extremely tired all the time. I had been very
active before, running 3days a week and then
all of a sudden, moving was difficult. Everyone
thought I had the flu because I had body aches,
fatigue, and a low grade fever. I wasn't
convinced because my body aches seemed to
get worse and never went away. Then I noticed,
the rash was also on my face, chest, and upper
arms.
Normal activities like getting dressed, getting
out of bed, taking a shower all seemed to take
so much effort. I went to the doctor and she
said that I had a sinus infection that turned into
a bacterial infection. She gave me a
prescription and I started crying. She asked me
what was wrong and I said, "I just want to know
what's wrong with me." Needless to say, I didn't
think her diagnosis was the root problem.
I went home and got on the Internet and typed
in my symptoms. (skin rash and muscle
weakness) I found all this info on DM and was
both amazed and frightened.
All the symptoms described seemed to be
exactly what I was experiencing. I called the
doctor the next morning and she said she didn't
want to jump to that conclusion and she didn't
think I had DM. I wanted to believe what she
said but I was unsure. I did get the prescription
filled but of course, the pills did nothing to help
my pain.
A few weeks later, I became so weak that I
couldn't release the emergency brake in my car.
By this point, I was convinced I had DM. I flew to
Dallas to see a Dermatologist and have blood
work done. The dermatologist took one look at
my rash and was certain it was DM but needed
to see the results of my blood work. The
blood work confirmed that I had an elevated
CPK level of 2070. I was so happy to finally get
some answers!! They started me on 40 mg of
Prednisone but I didn't feel very different so I
moved up to 60 mg. I am now down to
50mg/40mg alternating days and feeling much
better. Our support group here in Houston is
also doing a 12 week study to see how a diet
high in omega 3 fatty acids and antioxidants
affect mood and inflammation. I'm on my 7th
week now. I eat at least 5 servings of fish a
week and lots of fruits and veggies. I stay
away from lots of sugars and fats and I feel
great. I try to eat all natural foods so I live in
Whole Foods. Its costs more but it's worth it.
I haven't experienced any weight gain from the
Prednisone and
it's probably because of this diet. I had more
blood work done a few weeks ago and this time
my CPK level is normal.
The doctor said that my strength has improved
dramatically because the last time it was 3 over
5 but now it's 5 over 5.
She said the last time she saw me, my strength
was like that of an old person but now it's what
it should be. YEA!!!
It has been quite a battle but I have learned so
much and met so many wonderful people.I try to
focus on the good and not the bad and that's
what keeps me going. I'm not at the full strength
I had before but I don't have any problems
releasing emergency brakes these days so I'm
pleased. I can get dressed and put on socks
without crying which is a blessing.
I hope that this encourages you if you're having
a difficult time. I look forward to talking with you
and I'm so thankful that we can all be here for
one another. Don't give up,
and just recently got married. I go to school and currently
taking psychology.
My life was going good pretty much and I'm pretty content
about it. My life changing event happened June 26th 2007
when I was diagnosed with a rare muscle disease called
Polymyositis. It is an autoimmune system disease that makes
my immune system attack my healthy muscle tissues that
causes weakness.
My symptoms started a couple of years ago. At first it was
just fatigue and muscle pain, it slowly progressed to general
weakness. It was getting harder for me to climb stairs, get up
on chairs, walk, lift my arms, lift my head and run. I get tired
and run out of breath easily. Of course these symptoms
didn't happen all at the same time, they happened gradually
one at a time.
Given that I am very skinny and petite, I thought at first that
maybe I wasn't getting enough nutrition in me. I went to my
family doctor and told him about it I was told me to eat more
and get some exercise, so thats what I did. I tried including
protein shakes into my diet, I went to the gym almost
everyday, enrolled myself to kick boxing class, Thai boxing
class, lift weights, etc etc. I did that for almost a year. I didn't
get any stronger. I felt like I was going backwards.
I knew deep down inside that there was something wrong
with me. I noticed it by the way I walked. I couldn't walk
straight anymore... I walked wobbly like an old lady. I fell on
my knees all the time and I couldn't get up off the floor. I was
getting frustrated and didn't know what was wrong with me. I
went to a physiotherapist and he did some tests.
After he examined me thoroughly and did some physical
tests, he said I didn't have any broken bones and I was
doing everything right but there was a significant weakness
in my muscles. He suggested that my problem might be
Neurological and he told me to go to my doctor and ask for
blood tests.
I went back to my doctor with a note from my physiotherapist
ordering a blood analysis to be done. The blood tests
results came back and they were all normal, my doctor
ordered a CPK test and when it came back, they found out
that it was abnormally high, it was at a staggering 24000
when the normal level is supposed to be only at about 100.
I got so scared. "Why is it so high?" I asked myself. I was
then sent to an Internal Medicine Specialist. Since my
disease can be associated with cancer, they did a series of
test on me to make sure they could rule that out.
Fortunately, my tests came back negative. Phew!
After seeing an Internal Medicine Specialist, I was sent to a
Neurologist. There I had an EMG test and found that my
muscles were clearly damaged. They were firing constantly
and it was clear cut that I needed to be treated right away. I
still needed to do a muscle biopsy in the near future but that
was put that on hold for a while. I was prescribed Medication
that day and still taking them.
I am just starting on my journey with this illness and learning
it everyday. It is hard, I am now very weak, even weaker than
when I was first diagnosed. I am now disabled. I have to be
lifted up whenever I want to get up from a chair, I have to be
assisted whenever I walk and these are the things that are
very hard to accept. I feel mad, sad, angry and frustrated,
but I have to move on.
This disease is not contagious, not genetic and nobody can
explain why and when it can happen, it just happens.... "but
why me?" I ask that sometimes. I find myself just crying
because I feel useless now. I can't do the things I could do
before and all that is left in me is pity, but I have to fight. I am
just starting and there is no way I can give up now.
It will take a long time to get my strength back but I know I will
get there. My medications are deforming my body and
making me feel ugly but they are helping me at the same
time. All the side effects will go away once I taper down my
Meds, so they say. I will get through this I just need to hang
in there.
I feel blessed still, and thank God for so many things. I have
a very loving family and ever loving husband. I feel so lucky
to have him. They are the source of my strength and the
love that they give me is unconditional. I love them with all
my heart.
Thank you for your story Mary, Please keep us updated.
taking psychology.
My life was going good pretty much and I'm pretty content
about it. My life changing event happened June 26th 2007
when I was diagnosed with a rare muscle disease called
Polymyositis. It is an autoimmune system disease that makes
my immune system attack my healthy muscle tissues that
causes weakness.
My symptoms started a couple of years ago. At first it was
just fatigue and muscle pain, it slowly progressed to general
weakness. It was getting harder for me to climb stairs, get up
on chairs, walk, lift my arms, lift my head and run. I get tired
and run out of breath easily. Of course these symptoms
didn't happen all at the same time, they happened gradually
one at a time.
Given that I am very skinny and petite, I thought at first that
maybe I wasn't getting enough nutrition in me. I went to my
family doctor and told him about it I was told me to eat more
and get some exercise, so thats what I did. I tried including
protein shakes into my diet, I went to the gym almost
everyday, enrolled myself to kick boxing class, Thai boxing
class, lift weights, etc etc. I did that for almost a year. I didn't
get any stronger. I felt like I was going backwards.
I knew deep down inside that there was something wrong
with me. I noticed it by the way I walked. I couldn't walk
straight anymore... I walked wobbly like an old lady. I fell on
my knees all the time and I couldn't get up off the floor. I was
getting frustrated and didn't know what was wrong with me. I
went to a physiotherapist and he did some tests.
After he examined me thoroughly and did some physical
tests, he said I didn't have any broken bones and I was
doing everything right but there was a significant weakness
in my muscles. He suggested that my problem might be
Neurological and he told me to go to my doctor and ask for
blood tests.
I went back to my doctor with a note from my physiotherapist
ordering a blood analysis to be done. The blood tests
results came back and they were all normal, my doctor
ordered a CPK test and when it came back, they found out
that it was abnormally high, it was at a staggering 24000
when the normal level is supposed to be only at about 100.
I got so scared. "Why is it so high?" I asked myself. I was
then sent to an Internal Medicine Specialist. Since my
disease can be associated with cancer, they did a series of
test on me to make sure they could rule that out.
Fortunately, my tests came back negative. Phew!
After seeing an Internal Medicine Specialist, I was sent to a
Neurologist. There I had an EMG test and found that my
muscles were clearly damaged. They were firing constantly
and it was clear cut that I needed to be treated right away. I
still needed to do a muscle biopsy in the near future but that
was put that on hold for a while. I was prescribed Medication
that day and still taking them.
I am just starting on my journey with this illness and learning
it everyday. It is hard, I am now very weak, even weaker than
when I was first diagnosed. I am now disabled. I have to be
lifted up whenever I want to get up from a chair, I have to be
assisted whenever I walk and these are the things that are
very hard to accept. I feel mad, sad, angry and frustrated,
but I have to move on.
This disease is not contagious, not genetic and nobody can
explain why and when it can happen, it just happens.... "but
why me?" I ask that sometimes. I find myself just crying
because I feel useless now. I can't do the things I could do
before and all that is left in me is pity, but I have to fight. I am
just starting and there is no way I can give up now.
It will take a long time to get my strength back but I know I will
get there. My medications are deforming my body and
making me feel ugly but they are helping me at the same
time. All the side effects will go away once I taper down my
Meds, so they say. I will get through this I just need to hang
in there.
I feel blessed still, and thank God for so many things. I have
a very loving family and ever loving husband. I feel so lucky
to have him. They are the source of my strength and the
love that they give me is unconditional. I love them with all
my heart.
Thank you for your story Mary, Please keep us updated.