My life was always normal. Being raised in Wyoming the first 8 years of
my life I always had cold hands and feet. Who wouldn't? Then we moved
to Southern California and I really didn't notice it much anymore. At
least until after my kids were born which was when I was 30 years old.
Then my feet started their things again but that never bothered me
much. In the meantime a divorce had come and gone and I had the
kids with me. I decided to take them back to Wyoming and try for
a normal life. My mother was back there so I figured it would not
be that bad.But I had no friends whatsoever there. So I was pretty
lonely for a while but my mom was always a friend to me in my life.
Just like I am to my daughter.Then I met my present husband. We had
been married about a year when I was sitting in the Dr's office and
right there in front of him and God...my fingers turned blue...grey
and white then they became numb.The only thing out of his mouth was
"OH LUPUS"...I had heard that word before however I knew nothing
about it.But it angered me that he said it in that manner and tone
without saying another word about it he just ordered a blood test
and that was it. The test came back and he said something or the
other was real high and that I did have something serious wrong
with me. It was the highest readings that he had ever seen...
it made me feel like I was going to die tomorrow.
With that feeling I changed Dr's and the new one had a better
mannerism. He ran some tests then even more tests and finally
finished up with a couple more. Then he called me in for a
consultation. He was up front with me and ask me where my husband
was. He wanted to talk with with both of us...
now I knew that I was in trouble.
At that time my hubby was working back east 6-7 months out of the year
to set his retirement pension from the Union. That was one of the
smartest things that we ever did. So I told the Dr. that and said that
whatever it was to let me have it. He told me that I had a Connective
Tissue Disorder. Well...I could handle that...at least he didn't say Lupus.
He rattled off something about Scleroderma. He also told me that my
lungs had been affected so I had Interstital Lung Disease also. He said
you are one of those rare cases Pat. Your life has changed from
this moment on. You will have about 5 years...you better bring your
husband home. So off to the Library I ran...only to be more shocked!
I had 5 years! I was sent into a panic! No one to talk to not wanting
to scare anyone with it. I layed awake at night thinking I was going to
die and leave my kids by themselves. Then I had to tell my husband
over the phone. We sat and cried... so he finished the year up and came
home. He had to retire a year before he really wanted to. The Dr's started
me on medication that was unheard of with side effects that were not
good. But they were doing something for the lungs and the Dr's liked
the outcome. The body became more accustom to them so some of the side
effects left. Along with SD and the Interstitial Lung Disease there was
Raynauds. Then there was a Hyital Hernia with esophageal reflux that
hurt so bad that it would wake me up in the middle of the night making
me think that I was having a heart attack! Which started some of my
panic attacks. I had never had them before either. There are a lot of
little buddies that follow with this disease but I try to forget them
but I know that they are there. My medicines are so many that we joke
about my second breakfast. But I know that if it was not for the
medicine and the caring of my Dr's that I would not be here...
8 years later. YEP! I'm still here!
My lungs are not good...the heart is not good. But in time going
through all the stages of denial,anger,bitterness...you name it.
I have dealt with it. All by myself I have gone through these motions.
Telling no one because they would not understand. The family could see
me changing...my kids had been told about this disease and what could
happen to me. I never lied about it to them. So they grew up faster
than most kids around them. Then one Christmas about four years ago
my husband decided that we should have a computer. So there came my
way into the cyber world of knowledge. I read anything that I could
read about this disease and about the lungs. The main thing I found
out was that STRESS was your worst enemy! So I learned how to deal
with it through music...some meditation methods and focusing within
myself. Mind over matter...and I used it to the best of my ability and
it did wonders. I could control a lot of things that stressed me out.
I used my hobbies as a relief from it too. But as the years have
creeped up on me and these diseases have taken their toll...I have
found it harder to control it like I use to. But I have learned one
thing. There is LIFE with this disease even for those that are a rare
one like me. Yes...your methods of getting things done change plus
your way of thinking changes too. Each day is a new experience and
with that it can give you hope that you can do anything that you
You learn to appreciate the simplier things in life. The saying
"STOP AND SMELL THE ROSES" means even more to me now. Even though
I know that I will not live a normal life time...I have seen several
of my goals that I set for myself come and go. No...they are not
long term goals. Those are out...it is the ones that are short term
only. The only long term goal that I set for myself was when I told
my children about this horrible disease...my son ask if me if I would
be here to see him graduate high school. That was five years in my
future. I told him to the best of my ability and God's help I would
be sitting in the stands with tears rolling down my cheeks. We did
just that! Now I have a daughter that is a senior this year. So we
have that goal set. With God's help and blessing we will be sitting
in the stands with tears rolling down the cheeks again! There is no
giving up! It is not hopeless as your days are numbered from the
beginning...use them wisely.
Now...for one last thing. There are a lot of support groups on line
that deal with health problems. Some have been good for me. But then
again there were some that I didn't get anything out of. But I do
have a great family that I belong to here in cyberspace. The name
of the group that I belong to now is "Ladyfairiedust". Each one of
them have been there through thick and thin with me. Words of
encouragement...a cyber shoulder when I need one...even
congratulations at times. All these times we have shared. We all
know how each other feels because all of us are going through it.
Each in a different manner,some harder than others...some are going
through what I am going through. We share a bond knowing that we all
have gained trust, caring and a loving compassion from each other.
My best friends are here because they understand me and my life.
Not only with my health but what's going on in my life as everything
is touched by this disease. But you never give up hope...never give
in to the sorrow of "WHY ME" Oh ...it's okay to have a pity party
but limit the time to only a day. Then pick yourself up...dust your
"fanny" off and get on with what you are going to do with your life!
Pat's advice is... Please take time to "SMELL THE ROSES"!
This story was written on August 16th, 2001.
It is with great sadness and sorrow that I have to say that
Pat Nelson passed away from the complications of Scleroderma
on January 9th,2004. She fought a long and courageous battle.
She had a heart of Gold and had many online friends who also had SD.
She will be missed by all. Our heartfelt sympathy goes to her family.
Pat was very talented in Paint Shop Pro and many different crafts.
Below is a Graphic that Pat made for me on my birthday.
I will treasure it always.
Pat made many friends online that also had SD and one of them was a
woman named Pammy from Australia. Pammy is a twin and so was Pat so
they use to kid each other calling each other "My Other Twin". Pammy wanted
to show a graphic that Pat made for her that she will treasure always.
Their friendship was very special to Pammy. Below is the graphic that
Pat made for Pammy.