Welcome...
LUPUS ~ SCLERODERMA ~ POLYMYOSITIS =
MIXED CONNECTIVE TISSUE DISEASE

These words are my life....................
When I was just 14 (1989) Lupus became a part of my life permanentally.
I can remember being really sore and my mother thinking I just
wanted to stay home from school because she couldn't see anything
wrong. I developed this rash on my face under both eyes and
on my nose. My ankles and hands began to swell and I was so
tired and sore, my mother ended up taking me to the ER at UW
Hospital and Clinics in Wisconsin (where we lived at the time).
I ended up being hospitalized for months and transported to
Mayo Clinic in Rochester Minnesota for more tests (blood &
skin biopsies) until they finally put their heads together and
diagnosed me with Lupus.
The rash on my face is something common
in Lupus patients and is called the "Butterfly Rash".
After my diagnosis of Lupus, my health really failed. My kidneys
were leaking protein (microscopic blood) and my mind couldn't
take the pain of knowing I will be sick forever. THERE IS NO
CURE FOR LUPUS.
I was in and out of the hospital, needle pokes
eventually felt numb, and depression set in. My kidneys were
not responding to oral meds and the doctors were running out
of ideas to treat me because Lupus was so rare. I began monthly
infusions of a chemo drug called Cytoxan. I would always get
dehydrated so I would have to stay in the hospital a day or
two. While my classmates were planning their week and all the
fun it entailed, I was planning my next chemo treatment. After
six months of chemo I had a kidney biopsy and for the most part
the chemo helped. Eventually, I ended up doing those treatments
two other times for the same reason. I missed out a lot in high
school because I was hospitalized so much and home schooled
in the hospital.
In 1993 I finally had control of the Lupus
with medication. I was planning my High School Graduatuation
and for the first time in my life, setting goals for my future.
Just when I thought my life had turned around, my mother became
ill. My mother was in a coma for months and came home not able
to eat real food and tubes coming out of her in every direction.
I had to feed her twice a day through an I.V. in her chest for
a long time. My mother eventually had a full recovery, but my
mind still pays the price.
In 1995 I decided to move to North
Dakota where my mother was born and raised. The Lupus had good days and bad days.
In 1996 I had trouble with blood clots in both legs and doctors
ended up taking out a vein in each leg. In 1998 My grandfather
became very ill and I ended up taking care of him and watching
him suffer. He died in 2002. I miss his jokes and his long standing
pranks! He was always telling a story and wanting to pull a
prank on someone! :)~
In 2002 I decided to finally do something
for me and entered Cosmetology School. It was hard to go to
school everyday with a smile on my face knowing the internal
effects of Lupus were for me to feel and noone to see visually.
The fatigue, migrains, and arthritis were my main pains in school
until October 2003. In October my skin began to feel really
tight and my fingers were always blue and ulcered. Once again
after numerous tests and biopsies and a trip to Mayo in Minnesota.
I was diagnosed with Raynauds and then Scleroderma and to sum
it up Mixed Connective Tissue Disease. THERE IS NO CURE FOR
SCLERODERMA. I had no health insurance and it took the help
of the North Dakota Senate to get it. At that point my life
stopped and my body became a human pin cushion. The Raynauds
was uncontrollable and I ended up having surgery for that. The
surgery was a failure and the side effects are inhumane. I now
sweat from the breasts down uncontrollably like a faucet. The
Scleroderma was so active that my lungs began to shrink and
my muscles were being eaten (Polymyositis) as I grasped for
all the air my oxygen tank would allow and my wheel chair would
hold. My insurance was denying me treatment and my health was
failing.
In 2004 my mother and I headed to Chicago’s Northwestern University to see if I qualified for their stem cell program. I did qualify, but could not come up with the $90,000. In 2006 I was having such bad abdominal pain, I ended up in the ER in Minot. After being admitted for extensive testing (lymph node biopsy & bone marrow biopsy), I was diagnosed with Lymphoma. Eventually I ended up in Minneapolis at the University of Minnesota and was admitted there. I was in the hospital in Minnesota for a week and learned that I was mis-diagnosed at the Minot hospital. I never did have Lymphoma. I was scheduled for chemo therapy and did not need it. Thank God I ended up in Minnesota! The weird thing was I still needed some of the same medication for my Scleroderma (Polymyositis) that is used for Lymphoma. My insurance would not budge.
2007 has got to be the most emotional year of my life. I lost the most influential person by far in my journey of illness and pain to retirement. I tried all the treatments my medical insurance would allow. The treatments either gave me bad side effects or my body did not take to them. My diseases are very active and out of control. I continue to hope that medical science flourishes in Connective Tissue Disease and I become an Autologous Stem Cell Transplant recipient. Remember, there are many kinds of Stem Cell Transplants. The Stem Cell Transplant I am hoping for harvests my own stem cells. I do not need a donor and the procedure is very expensive. All I can do is Hope and Pray the right person hears my story and or stumbles upon this website.
With the North Dakota Senate behind me, I began treatment
at two different cancer centers in the state. My mother invested
a lot of time and many miles on her car to keep me alive and
still does.
Today, my lungs are better and I am off the oxygen.
My muscles are frail and I still rely on the wheel chair for
long distances, my fingers are curled and look like shiny claws,
the migraines come and go, the arthritis lets me know I am here
and will survive, the depression lets me know I am strong, the
sweating rejuvenates my soul, and the everyday fatigue lets
me re-group and keep some sort of peace in my mind. If you see
me, you will notice my clawed fingers and the 60lbs. of memories
lost. For the most part these diseases are visually impaired
and not meant for the world to see. I started this website to
tell my story and raise awareness of these mis-diagnosed and
uncommon diseases. Feel free to search this site and read my
daily journal with new pictures each entry, just click on Journal
above and then the month you want to read. You will also find
I was in the Fargo Forum (newspaper) twice and can enjoy those
articles if you click above on Articles. There has also been
an account set up for me if you would like to donate click on
Donate above to find out how.
I am blessed and will continue to fight for my survival and
educate the world about Mixed Connective Tissue Disease! |