| Polymyositis, Dermatomyositis, Juvenile inclusion, Lupus |
This site is dedicated to those suffering from the above diseases. |
- We have ventured into an unknown journey that we did not ask for.
- We are accepting of this journey even though we do not know where it will take us.
- This journey has many twists and turns we now nothing of.
- Together we can take this journey and share experiences with each other.
As this disease is so rare I guess we have been selected as the chosen few. A question
we are all asking ourselves, Why me! What we do with it and where we take it will be up
to us. Depression is a major factor for some patients unable to cope with this. This can
lead to serious consequences for some. A positive attitude is something we need to
maintain. A can do, will do is what will get us through.
In the meantime we need each others support. This disease takes away our functionality
to lead normal lives. We are at the mercy of scientists and Doctors to which we have no
control. Our beliefs in a higher power is what will guide us through along with a positive
attitude. This is an absolute must.
we are all asking ourselves, Why me! What we do with it and where we take it will be up
to us. Depression is a major factor for some patients unable to cope with this. This can
lead to serious consequences for some. A positive attitude is something we need to
maintain. A can do, will do is what will get us through.
In the meantime we need each others support. This disease takes away our functionality
to lead normal lives. We are at the mercy of scientists and Doctors to which we have no
control. Our beliefs in a higher power is what will guide us through along with a positive
attitude. This is an absolute must.
We all have stories to tell and journals to share. The purpose of this is to
bring us all together in our shared experiences. To learn from each other.
My story
I was diagnosed Dec. 22nd 2006. Christmas was just a few days away but
the furthest thing from my mind. It started a couple months before with a
rash on my forehead and itchy scalp. Of course due to the cold weather I
put it down to dry skin. I then had rashes on my legs, arms and thighs,
once again out came the moisturising cremes.
Nothing worked and I had considered going to a Dermatologist but that
thought went of my head when I started having problems raising my
arms. Never in a million years would I have connected the two.
I went to a Chiropractor, he would fix me up. Two weeks later I could not
get up from a chair, my legs were so weak, then I could not get out of bed
or climb stairs. This all came about so suddenly I didn't have a clue what
was going on.
I got scared and went to a Medical Doctor who upon seeing me gave me
blood test and the results were a CPK of 5,000, I had no clue what this
meant. He immediately sent me to a Rheumatologist for more testing.
Two day's later and more tests than I ever thought existed including a
muscle biopsy from my upper right arm I was told I had Polymyositis and
Dermatomysitis.
I had no clue what they were taking about and it was explained that my
body had attacked itself and we needed to get it under control. Was I
scared, hell yes, I had never heard of such a thing but I was in no condition
to argue in fact I don't even think I asked too many questions due to the
relief that I could be treated and was not terminal. Beside that I had no
idea what to ask.
I spent the next few day's in bed unless I asked for help getting out which
was hard for me to do having always been so independent. This in itself
was something I would have to overcome. The Christmas tree stayed bare.
Not being able to get up from a chair I also could not get off the toilet, this
was too much to bear and soon found a medical store that sold risers.
That did the trick, I was independent at least in this little room.
I sat in my Pajamas for almost a week as I could not get dressed by
myself, This was not going to work. My determination came into play and
I went to the computer to look up what this was all about. At first I was
scared of what I might read, I had been told it was not terminal so how bad
could it be.
As luck would have it for me I found a support group on the TMA website,
(The Myositis Association) it was here that learned so much from some
great and caring people. I was not alone, the greatest morale booster I
could have been given. Well If they could endure what they had been
through so could I.
By now I had figured out how to get out of bed by holding on to my PJ
bottom and lifting myself out. I then found I could almost dress myself
using little tricks here and there. Forget the socks though, that was
impossible. Showering was another dreaded chore, I had no strength in
my arms and could not raise them so I had much to overcome. I had my
hair cut short in order to make things easier, much to my Husbands
dismay but then he didn't have to deal with it. Drying was impossible so I
laid on the bed and air dried, thank goodness the house was warm. I
became one with my support group.
Reading all the warning labels for the drugs I was taking scared the hell
out me but thanks to the support I learnt not to be afraid although many
side effects were almost a sure thing.
At first I thought my questions were rather silly but that was not the case,
no question was too small to ask. I could feel the caring resounding
through my computer with their replies.
New Years Eve
What a crazy night, We had an ice storm and yet determined to go meet
our friends at the VFW we tried to venture outside to our vehicle, right
then and there we should have just stopped turned around and gone back
in the house, but no, we made it to the truck and then hit a bad ice spot on
the passenger side, my side, with my Husband standing next to me
holding me up. I managed to get my butt on the seat but then as I tried to
get my legs up I couldn't and I fell backwards over into the drivers seat
and could not move, my body was frozen again, I was laying almost flat
and my Husband was trying to lift me up but his feet kept slipping on the
ice under him, this was just lunacy besides being freezing out. I don't
know how he did it but he got me to a sitting position and then in to the
drivers side. We had got this far and I was not ready to get back out and
try going back to the house so we carried on to the club. Once there I
thought about what we had just gone through and it scared the heck out of
me to even try and get back home. I got comfy on a bar stool and was not
going to leave. Once we calmed down we had a great night and
celebrated New Years. I was not able to do anything but just being with
friends takes a lot off your mind. We made it home safe.
January 2007
I was anxious to get back to my Dr. In Omaha as it had now been a month
and I wanted to the results from all the tests that had been done in the
meantime, lots of cancer test. Fortunately they all came back good, I was
dealing with Polymyositis and Dermatomysitis I was taking 60 MG of
Prednisone and had Methotrextate added to it as my Dr. wanted to get
more aggressive to fight this and get me back on my feet as quickly as
possible, these are two powerful drugs and given mainly to cancer
patients.
February 2007
Mostly spent sitting here at my computer talking to my new friends on the
TMA site and getting support that I so desperately needed. I learned to do
many things and tried to get back my independence, this was the worst
thing to lose. It taught me many things and ways to appreciate what I have
now, not what I have lost. We take so much for granted in life and then
you realise how in a flash it can all be taken away. Guess it is like divorce,
one minute you have a marriage the next you don't, how you handle it
makes the world of difference to your life.
March 2007.
March was a bad month. I would wake up during the night with
excruciating pains in my knee's, feet and legs, it felt like hot pokers
searing through them, I started popping pain pills for those, anything to
make the pain go away. I would literally cry with muffled screams. The
first time this happened it lasted over two hours. After that my mind
alerted me to the starting pain and woke me up, I would immediately get
up and try to walk it out while I took a couple pain pills and I also rubbed
deep ice on them both, this seemed to do the trick and with-in an hour I
could go back to bed. This went on almost every night for a month when
the final one came it was with a vengeance, Lots of analgesic ice and 4
strong pain pills I was still in agony 5 hours later, totally worn out I
considered going to the Dr but was in too much pain to even get dressed
to go, it finally subsided and I was fine. That was the last time that
happened so what it was I have no idea but I hope it never comes back. I
mentioned it to my Rheumy and she was baffled.
I was now able to start Physical Therapy. On my way to my first session I
decided to stop by Walgreens to get the ink jet filled for my printer, on my
way out I lost my balance on their handicap ramp as it had a deep slope
and down I went, flat on my face. I was so embarrassed and when two
ladies who saw me fall came over to help I had to tell them to leave me
alone and fetch some strong guy's to help me up. I could not even roll over
or sit up as my body was frozen. My legs were good for walking, though
not very steady... but not for getting up from a down position, I had to be
picked up and planted squarely on my feet so I could maintain balance.
Once this was achieved the Manager asked me to fill out an accident
report which I did and left. As I was driving away my head and ribs hurt
like crazy, I was not concerned about the ribs so much as my head, it took
a hard blow on concrete. As it happens my Dr. is right next door to the PT
clinic where I was heading so I stopped by there first feeling there was no
way I could do PT now the way I was hurting. Well I had broken a rib and
a couple day's later I had a beautiful Shiner, one that would last for 3
months. I decided it is easier on the head to fall at home as the walls
give a little more than concrete.
I can now shower and dress with-in 15 minutes, raise my arms to reach
for things, drive my van, do housework, go shopping and play
shuffleboard. (With limitations) One thing I cannot do is get myself off the
floor when I fall, but that also will come in time I hope.
April 2007
It has been four months since being diagnosed and I almost feel normal
again except the legs still don't always want to co-operate, they are still
weak but I will get them to where I want again with hard work and
determination. Maybe not what I used to know as normal.
I miss laying down on the floor with my Black Lab, Whitey and playing. My
Husband has Multiple Sclerosis and is in better shape than I am thank
goodness. It has been hard on him to see me like this and at first seemed
to be in denial, it was rough but we have got through that stage and can
now discuss both our symptoms and some of the similarities between us.
To do small chores easily wears me out but the main thing is I can do over
a period of time. That to me is getting back to normal. Although it is not
normal compared to life before. I can only focus on today and the future
not the past. Positive thinking plays a major part.
May 2007
Have cut down more on the Prednisone and feeling a lot more tired than I
did before I am sleeping more but many uncomfortable nights as the
slightest movement or sound wakes me up and then it is impossible to get
back to sleep. I now have many CD's with movies on. My concentration
level is not what it used to be anymore, I tend to have far too many irons in
the fire and then forget to light it. The weight gain has been hard to get
used to, I wanted to throw every mirror in the house away, I guess as with
every thing else you learn to accept it, just another aspect of positive
thinking.
Well enough of me, please read the stories from others, every one has a
different journey with this disease. Faye has had an exceptionally long
journey with this disease and has been an inspiration to me. I feel so
thankful that I have only gone through what I have so far.
I will have lot's more to post later as I am just getting the hang of doing
this web page thing, My Daughter has been getting me through all the
mess ups I make, I hate to keep bothering her. For all I know I may muck
this up also.
July 15th 2007
Well another month has passed and although I am still feeling very tired
and a few aches and pains, things are going relatively well. I have been
staying so busy at our club that time passes so fast. I am just thankful to
have this Volunteer position as I know I would not be able to hold a regular
job with regular hours. The mornings I don't feel too well I am able to
choose to stay home and if I get tired there I can come home at any time.
It has been very hot and dry and the heat has got to me more than ever
before. My passion of gardening has gone out the window and the weeds
have taken over. I would write more but right now I am in a tired mood so
will come back and do some more later. I wanted to get Phil's story on
tonight.
August 2007
Quite an exciting month. Now isn't that a weird statement living with
Myositis!
For the most part I have felt pretty good
and been able to work at our VFW doing my Volunteer work which
consists of sitting at a computer. This has been so good for me to take
my mind off this horrible disease, not that it ever goes away, each time I
get out of my chair I am reminded of it. Sometimes I feel it is an effort to
do this but with it being an office chair I have it raised on high. I have been
pushing my self to stay there as long as possible because I know the
minute I get home it is off to bed, the exhaustion sets in and I am pretty
useless for a while.
I had my usual monthly blood work done two days ago and got the call
from my Dr. to reduce my Prednisone from 12 1/2mg to 10 mg, I am a
little apprehensive as this is supposed to be the critical dosage for
flaring back up. I am going to stay positive and hope it all goes well.
Last month I was called to go back and get another blood test done as my
sugar level was way up, well, after thinking about it, it should have been, I
ate a bag of gummy worms and some other sugar coated candy on the
two hour drive to see my Doctor. I ignored the request and this month
everything was just fine so I guess I saved some money by finding a
reasonable cause to explain it. Kinda like someone saying your drunk and
when you think about it you say well yes, I have been drinking, LOL. Don't
look for the negative, find the positive.
I am planning to do a 14hour drive to visit my Daughter and Grand children
in Michigan come Sept 16th. I am going to take my dog "Whitey" for
company and even planning to come back via Canada.
Now this could be exciting. I am not setting any time frame as I can't drive
too far without the old eyes wanting to close so there will be many stops.
It may take 20 hours, who knows till it happens. I will post again after I
return. In the meantime, keep the faith, stay positive and focused and get
on the TMA website for all your support. www.tma@mysitis.org.
September/October 2007
some times feel a little anxious that things are going too good, I made the
trip to Michigan without any problems at all, I did not do the Canada route
as I had hoped but had a great time with my Daughter and Grand children.
My Dog was an exceptional rider, we stopped at every rest area which
helped me tremendously and I had no problems getting Motel rooms, this
had been a concern getting a nice room with a dog.
I am now down to 7 1/2mg of Prednisone but still at 100 mg Imuran
(Azathioprine) I have been getting tired a lot sooner than I did before, I am
usually in bed by 7:30pm, sleep comes easily now.
There have been times I have thought about trying to get a job but afraid of
getting a flare up and then I would be useless.
I enjoy my Volunteer work at the VFW as I can come and go as I please. It
is unfortunate that my Social Security Disability only covers my Health
insurance each month, I sure could use some extra spending money.
The fatness in my face has gone down a lot but the stomach is a big
problem and has nothing to do with eating habits.
November 2007
Well here I am and today is Thanksgiving, Wow, what a year, last
Thanksgiving I was having all the symptoms but not yet diagnosed, it is
hard to believe all I have been through during this year and yet come out
on top. Last year I didn't get a Christmas tree or decorations up, this year
I am ready for it, I did it today, all except the shopping that is. I still takes
me a while to do a lot of physical activity but as long as I sit down plenty it
does not matter how long it takes me, I am just thankful I am able to do it.
I am now back to a size 12 jeans and large top.
December 2007
I stayed busy during this month with very little problems. I dropped down
to 5mg of Prednisone and so far so good. This has been a year I prefer
not to repeat.
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If you would like to send me a story to post please make the subject line:
Stories
Email: Zara1305@yahoo.com
bring us all together in our shared experiences. To learn from each other.
My story
I was diagnosed Dec. 22nd 2006. Christmas was just a few days away but
the furthest thing from my mind. It started a couple months before with a
rash on my forehead and itchy scalp. Of course due to the cold weather I
put it down to dry skin. I then had rashes on my legs, arms and thighs,
once again out came the moisturising cremes.
Nothing worked and I had considered going to a Dermatologist but that
thought went of my head when I started having problems raising my
arms. Never in a million years would I have connected the two.
I went to a Chiropractor, he would fix me up. Two weeks later I could not
get up from a chair, my legs were so weak, then I could not get out of bed
or climb stairs. This all came about so suddenly I didn't have a clue what
was going on.
I got scared and went to a Medical Doctor who upon seeing me gave me
blood test and the results were a CPK of 5,000, I had no clue what this
meant. He immediately sent me to a Rheumatologist for more testing.
Two day's later and more tests than I ever thought existed including a
muscle biopsy from my upper right arm I was told I had Polymyositis and
Dermatomysitis.
I had no clue what they were taking about and it was explained that my
body had attacked itself and we needed to get it under control. Was I
scared, hell yes, I had never heard of such a thing but I was in no condition
to argue in fact I don't even think I asked too many questions due to the
relief that I could be treated and was not terminal. Beside that I had no
idea what to ask.
I spent the next few day's in bed unless I asked for help getting out which
was hard for me to do having always been so independent. This in itself
was something I would have to overcome. The Christmas tree stayed bare.
Not being able to get up from a chair I also could not get off the toilet, this
was too much to bear and soon found a medical store that sold risers.
That did the trick, I was independent at least in this little room.
I sat in my Pajamas for almost a week as I could not get dressed by
myself, This was not going to work. My determination came into play and
I went to the computer to look up what this was all about. At first I was
scared of what I might read, I had been told it was not terminal so how bad
could it be.
As luck would have it for me I found a support group on the TMA website,
(The Myositis Association) it was here that learned so much from some
great and caring people. I was not alone, the greatest morale booster I
could have been given. Well If they could endure what they had been
through so could I.
By now I had figured out how to get out of bed by holding on to my PJ
bottom and lifting myself out. I then found I could almost dress myself
using little tricks here and there. Forget the socks though, that was
impossible. Showering was another dreaded chore, I had no strength in
my arms and could not raise them so I had much to overcome. I had my
hair cut short in order to make things easier, much to my Husbands
dismay but then he didn't have to deal with it. Drying was impossible so I
laid on the bed and air dried, thank goodness the house was warm. I
became one with my support group.
Reading all the warning labels for the drugs I was taking scared the hell
out me but thanks to the support I learnt not to be afraid although many
side effects were almost a sure thing.
At first I thought my questions were rather silly but that was not the case,
no question was too small to ask. I could feel the caring resounding
through my computer with their replies.
New Years Eve
What a crazy night, We had an ice storm and yet determined to go meet
our friends at the VFW we tried to venture outside to our vehicle, right
then and there we should have just stopped turned around and gone back
in the house, but no, we made it to the truck and then hit a bad ice spot on
the passenger side, my side, with my Husband standing next to me
holding me up. I managed to get my butt on the seat but then as I tried to
get my legs up I couldn't and I fell backwards over into the drivers seat
and could not move, my body was frozen again, I was laying almost flat
and my Husband was trying to lift me up but his feet kept slipping on the
ice under him, this was just lunacy besides being freezing out. I don't
know how he did it but he got me to a sitting position and then in to the
drivers side. We had got this far and I was not ready to get back out and
try going back to the house so we carried on to the club. Once there I
thought about what we had just gone through and it scared the heck out of
me to even try and get back home. I got comfy on a bar stool and was not
going to leave. Once we calmed down we had a great night and
celebrated New Years. I was not able to do anything but just being with
friends takes a lot off your mind. We made it home safe.
January 2007
I was anxious to get back to my Dr. In Omaha as it had now been a month
and I wanted to the results from all the tests that had been done in the
meantime, lots of cancer test. Fortunately they all came back good, I was
dealing with Polymyositis and Dermatomysitis I was taking 60 MG of
Prednisone and had Methotrextate added to it as my Dr. wanted to get
more aggressive to fight this and get me back on my feet as quickly as
possible, these are two powerful drugs and given mainly to cancer
patients.
February 2007
Mostly spent sitting here at my computer talking to my new friends on the
TMA site and getting support that I so desperately needed. I learned to do
many things and tried to get back my independence, this was the worst
thing to lose. It taught me many things and ways to appreciate what I have
now, not what I have lost. We take so much for granted in life and then
you realise how in a flash it can all be taken away. Guess it is like divorce,
one minute you have a marriage the next you don't, how you handle it
makes the world of difference to your life.
March 2007.
March was a bad month. I would wake up during the night with
excruciating pains in my knee's, feet and legs, it felt like hot pokers
searing through them, I started popping pain pills for those, anything to
make the pain go away. I would literally cry with muffled screams. The
first time this happened it lasted over two hours. After that my mind
alerted me to the starting pain and woke me up, I would immediately get
up and try to walk it out while I took a couple pain pills and I also rubbed
deep ice on them both, this seemed to do the trick and with-in an hour I
could go back to bed. This went on almost every night for a month when
the final one came it was with a vengeance, Lots of analgesic ice and 4
strong pain pills I was still in agony 5 hours later, totally worn out I
considered going to the Dr but was in too much pain to even get dressed
to go, it finally subsided and I was fine. That was the last time that
happened so what it was I have no idea but I hope it never comes back. I
mentioned it to my Rheumy and she was baffled.
I was now able to start Physical Therapy. On my way to my first session I
decided to stop by Walgreens to get the ink jet filled for my printer, on my
way out I lost my balance on their handicap ramp as it had a deep slope
and down I went, flat on my face. I was so embarrassed and when two
ladies who saw me fall came over to help I had to tell them to leave me
alone and fetch some strong guy's to help me up. I could not even roll over
or sit up as my body was frozen. My legs were good for walking, though
not very steady... but not for getting up from a down position, I had to be
picked up and planted squarely on my feet so I could maintain balance.
Once this was achieved the Manager asked me to fill out an accident
report which I did and left. As I was driving away my head and ribs hurt
like crazy, I was not concerned about the ribs so much as my head, it took
a hard blow on concrete. As it happens my Dr. is right next door to the PT
clinic where I was heading so I stopped by there first feeling there was no
way I could do PT now the way I was hurting. Well I had broken a rib and
a couple day's later I had a beautiful Shiner, one that would last for 3
months. I decided it is easier on the head to fall at home as the walls
give a little more than concrete.
I can now shower and dress with-in 15 minutes, raise my arms to reach
for things, drive my van, do housework, go shopping and play
shuffleboard. (With limitations) One thing I cannot do is get myself off the
floor when I fall, but that also will come in time I hope.
April 2007
It has been four months since being diagnosed and I almost feel normal
again except the legs still don't always want to co-operate, they are still
weak but I will get them to where I want again with hard work and
determination. Maybe not what I used to know as normal.
I miss laying down on the floor with my Black Lab, Whitey and playing. My
Husband has Multiple Sclerosis and is in better shape than I am thank
goodness. It has been hard on him to see me like this and at first seemed
to be in denial, it was rough but we have got through that stage and can
now discuss both our symptoms and some of the similarities between us.
To do small chores easily wears me out but the main thing is I can do over
a period of time. That to me is getting back to normal. Although it is not
normal compared to life before. I can only focus on today and the future
not the past. Positive thinking plays a major part.
May 2007
Have cut down more on the Prednisone and feeling a lot more tired than I
did before I am sleeping more but many uncomfortable nights as the
slightest movement or sound wakes me up and then it is impossible to get
back to sleep. I now have many CD's with movies on. My concentration
level is not what it used to be anymore, I tend to have far too many irons in
the fire and then forget to light it. The weight gain has been hard to get
used to, I wanted to throw every mirror in the house away, I guess as with
every thing else you learn to accept it, just another aspect of positive
thinking.
Well enough of me, please read the stories from others, every one has a
different journey with this disease. Faye has had an exceptionally long
journey with this disease and has been an inspiration to me. I feel so
thankful that I have only gone through what I have so far.
I will have lot's more to post later as I am just getting the hang of doing
this web page thing, My Daughter has been getting me through all the
mess ups I make, I hate to keep bothering her. For all I know I may muck
this up also.
July 15th 2007
Well another month has passed and although I am still feeling very tired
and a few aches and pains, things are going relatively well. I have been
staying so busy at our club that time passes so fast. I am just thankful to
have this Volunteer position as I know I would not be able to hold a regular
job with regular hours. The mornings I don't feel too well I am able to
choose to stay home and if I get tired there I can come home at any time.
It has been very hot and dry and the heat has got to me more than ever
before. My passion of gardening has gone out the window and the weeds
have taken over. I would write more but right now I am in a tired mood so
will come back and do some more later. I wanted to get Phil's story on
tonight.
August 2007
Quite an exciting month. Now isn't that a weird statement living with
Myositis!
For the most part I have felt pretty good
and been able to work at our VFW doing my Volunteer work which
consists of sitting at a computer. This has been so good for me to take
my mind off this horrible disease, not that it ever goes away, each time I
get out of my chair I am reminded of it. Sometimes I feel it is an effort to
do this but with it being an office chair I have it raised on high. I have been
pushing my self to stay there as long as possible because I know the
minute I get home it is off to bed, the exhaustion sets in and I am pretty
useless for a while.
I had my usual monthly blood work done two days ago and got the call
from my Dr. to reduce my Prednisone from 12 1/2mg to 10 mg, I am a
little apprehensive as this is supposed to be the critical dosage for
flaring back up. I am going to stay positive and hope it all goes well.
Last month I was called to go back and get another blood test done as my
sugar level was way up, well, after thinking about it, it should have been, I
ate a bag of gummy worms and some other sugar coated candy on the
two hour drive to see my Doctor. I ignored the request and this month
everything was just fine so I guess I saved some money by finding a
reasonable cause to explain it. Kinda like someone saying your drunk and
when you think about it you say well yes, I have been drinking, LOL. Don't
look for the negative, find the positive.
I am planning to do a 14hour drive to visit my Daughter and Grand children
in Michigan come Sept 16th. I am going to take my dog "Whitey" for
company and even planning to come back via Canada.
Now this could be exciting. I am not setting any time frame as I can't drive
too far without the old eyes wanting to close so there will be many stops.
It may take 20 hours, who knows till it happens. I will post again after I
return. In the meantime, keep the faith, stay positive and focused and get
on the TMA website for all your support. www.tma@mysitis.org.
September/October 2007
some times feel a little anxious that things are going too good, I made the
trip to Michigan without any problems at all, I did not do the Canada route
as I had hoped but had a great time with my Daughter and Grand children.
My Dog was an exceptional rider, we stopped at every rest area which
helped me tremendously and I had no problems getting Motel rooms, this
had been a concern getting a nice room with a dog.
I am now down to 7 1/2mg of Prednisone but still at 100 mg Imuran
(Azathioprine) I have been getting tired a lot sooner than I did before, I am
usually in bed by 7:30pm, sleep comes easily now.
There have been times I have thought about trying to get a job but afraid of
getting a flare up and then I would be useless.
I enjoy my Volunteer work at the VFW as I can come and go as I please. It
is unfortunate that my Social Security Disability only covers my Health
insurance each month, I sure could use some extra spending money.
The fatness in my face has gone down a lot but the stomach is a big
problem and has nothing to do with eating habits.
November 2007
Well here I am and today is Thanksgiving, Wow, what a year, last
Thanksgiving I was having all the symptoms but not yet diagnosed, it is
hard to believe all I have been through during this year and yet come out
on top. Last year I didn't get a Christmas tree or decorations up, this year
I am ready for it, I did it today, all except the shopping that is. I still takes
me a while to do a lot of physical activity but as long as I sit down plenty it
does not matter how long it takes me, I am just thankful I am able to do it.
I am now back to a size 12 jeans and large top.
December 2007
I stayed busy during this month with very little problems. I dropped down
to 5mg of Prednisone and so far so good. This has been a year I prefer
not to repeat.
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If you would like to send me a story to post please make the subject line:
Stories
Email: Zara1305@yahoo.com
| Zara King's Myositis Home Page |
SYMPTOMS NOT TO IGNORE
Rash: As described in chapter
Difficulty raising arms
Weakness in legs climbing stairs/steps
Cannot get out of chairs
Problems getting off the toilet
Can't get out of bed
Tiredness
Weak muscles
Back of neck feels heavy
Rash: As described in chapter
Difficulty raising arms
Weakness in legs climbing stairs/steps
Cannot get out of chairs
Problems getting off the toilet
Can't get out of bed
Tiredness
Weak muscles
Back of neck feels heavy
| Welcome 2007 - 2008 |
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03/14/07
This was a good day in March
Today has been a good day, I felt
enough energy to walk around
two stores so was able to stay out
longer instead of sitting here. The
last two day's were spent sitting
on the deck enjoying the new life
of the birds already building their
nests, The condo my Husband
built is full of activity with the
new nest building.
I am trying to figure out how to
garden this year. Our lawn is very
rocky so I was afraid to try and
walk on it but I have decided to
give in to the walker when it
comes time. It dawned on me that I
had not fed the birds since
December, something I would
normally
do all winter, Thank goodness we
have such wonderful bird loving
neighbors they sure didn't go
hungry. It was so
wonderful to be able to sit out
side once again in the lovely
warm weather. Oh well, a couple
more cold snaps and we
should be over the worst of the
winter blues.
This was a good day in March
Today has been a good day, I felt
enough energy to walk around
two stores so was able to stay out
longer instead of sitting here. The
last two day's were spent sitting
on the deck enjoying the new life
of the birds already building their
nests, The condo my Husband
built is full of activity with the
new nest building.
I am trying to figure out how to
garden this year. Our lawn is very
rocky so I was afraid to try and
walk on it but I have decided to
give in to the walker when it
comes time. It dawned on me that I
had not fed the birds since
December, something I would
normally
do all winter, Thank goodness we
have such wonderful bird loving
neighbors they sure didn't go
hungry. It was so
wonderful to be able to sit out
side once again in the lovely
warm weather. Oh well, a couple
more cold snaps and we
should be over the worst of the
winter blues.
I met Dan & his wife while on my trip in Michigan.
They are such a wonderful couple and it was the
first time I had ever been to a Starbucks, now I will
have memories every time I see one. Above is Dan
& I.
They are such a wonderful couple and it was the
first time I had ever been to a Starbucks, now I will
have memories every time I see one. Above is Dan
& I.
I don't think I mentioned I did a trip to Kansas City
to a Myositis KIT meeting. I met many great people
there including Jackie K from MO above right and
Jean, then Larry and myself.
to a Myositis KIT meeting. I met many great people
there including Jackie K from MO above right and
Jean, then Larry and myself.
February 2008
Well I have made it through a whole
year and one month. I pray this gives
encouragement to those suffering
from this horrible disease. I am
actually planning a trip home in April
for the whole month to see my
Sisters and old stomping grounds,
(doubt if I will do much stomping
though) I will try my best to. I hope to
meet some of my on-line Myositis
friends while I am there. Please join
us in the TMA support group, the link
is at the back.
Well I have made it through a whole
year and one month. I pray this gives
encouragement to those suffering
from this horrible disease. I am
actually planning a trip home in April
for the whole month to see my
Sisters and old stomping grounds,
(doubt if I will do much stomping
though) I will try my best to. I hope to
meet some of my on-line Myositis
friends while I am there. Please join
us in the TMA support group, the link
is at the back.
JULY 2008
well here I am 18 months into this disease and feel
normal again. I am back to gardening and doing
every thing I always used to do, I never thought it
possible to ever feel this way again. I am off the
Prednisone as of March 25th 08, I am now only
taking 50 MG Imuran and hope to be off that soon. I
hope to have more stories from others to share
soon.
well here I am 18 months into this disease and feel
normal again. I am back to gardening and doing
every thing I always used to do, I never thought it
possible to ever feel this way again. I am off the
Prednisone as of March 25th 08, I am now only
taking 50 MG Imuran and hope to be off that soon. I
hope to have more stories from others to share
soon.