My name is Michelle. I am 21 years old. I never thought I
would ever want to share my story with anyone, but here I am revealing to
the entire world about living with scleroderma. Please excuse any of my
punctuations or grammers errors.
Growing up I was a healthy person who loved exploring and taking
adventurous tours. I also love the art industry dealing with fashions,
architecture, drawing, crafts...etc. Volleyball was my favorite sport that
I loved playing. I liked going out to visit mother nature, fishing,
hiking, jogging. I was an active woman. My goal was to become a
psychologist and/or be in the healthcare department.
Never in my mind would I thought, that the pyramid of my dreams will
someday collapse onto the ground like sand. During the fall of 2001,
at age 17, I begin to notice the color changes of my left middle finger
but I didn't pay any attention. I told my mom about it and she was
clueless. I finally went to see the school nurse and she didn't seem to
know why either. I even started to make fun of myself saying that maybe
I've been using my middle finger too much that's why God is punishing me.
After a while, it became no big deal. I was a senior, at Everett High
School in Michigan, during that time and I was so excited to finally
graduate I was too focused on graduating and going to college. I worked at
a restaurant every other day. After a day of work I'll come home with knee
pain and wrist pain but I thought it was just because I had worked too
hard. I ignored all the signs. I ignored the pain, but when the pain
became very harsh my mom was there to massage it off with icy hot. I
started to notice that I was losing weight tremendously. Within a week,
I'd lose up to 10 pounds. My appetite was very low. It wasn't until one
morning when I was mopping the floor that I knew something was wrong and I
mean seriously wrong. The way I mop the floor, my hands has to come in
contact with the chemicals in the bucket. Well, about an hour later after
finishing mopping the floor, my knuckles begin to flame up. It started
swelling and itching. My fingers puffed up within hours. It was painful
and burning. I went to an urgent care clinic to see why was I developing
these unknown symptoms and the doctor says I may have lupus. I did a
little research on it and I knew I had some sort of arthritis disease but
I didn't want to believe it. I was in denial because I was thinking to
myself, "This cannot be happening to me, especially now!" I went to school
limping. I went to school looking pale and sick. My friends noticed the
difference in me and they questioned me a couple
times but I was so afraid of who I was becoming and so I told them
something else. I would make lame excuses every time but in the end I
couldn't hide myself any longer from them. I didn't know whether I
would be able to walk across the stage. When graduation came around I
was like a piece of something pasted together stumbling and strugglingvto walk across the stage. They all knew but they kept it silent. I
was so happy and relieved that I was able to walk. After my graduation,
everything happened so fast. I was in too much pain to continue
working and so I stopped working. My parents tried Asian herbs, which
only helped for that moment. They didn't know what was wrong with my
fingers and my joints. They thought it was only happening for a short
time and hoped it will soon go away. No. It did not go away. The pain
and the swelling grew worse and faster each day. All my joints in my
body became stiff and painful. I thought I was going cripple and that
I will soon be sitting in a wheelchair. The sad part was trying to
hide it from people. I wore a mask everywhere that I went but words
spread so quick everybody in town knew about my mysterious symptoms.
It was August 2002 when I finally went to see my primary physician and
she diagnosed me with Systemic Scelerosis or Scleroderma. I can still
remember that day like it was yesterday. I was terrified and broken
when the news broke to me. I sat in the patient room crying my eyes
out not knowing what will happen to me. I thought I was going to die
within a year or less because the doctor told me that there was no
cure. My heart was pounding because I was so scared. My whole entire
dreams collapsed and I died. I started seeing a rhuematologist, but I
needed more opinions and so I went to see a bunch of rhuematologist. I
was given so many medications that caused me to have constant diarrhea and drowsiness. I was always sleeping whether it was day or
night. I didn't know or understand what I was diagnosed with. To me
it was just a name. I was new to everything even the facilities where I
was jumping from one doctor to the next.
At the age of 18, it just hit me so hard in the face because I enjoyed
life so much and I had so many goals set in mind. As soon as I can
even begin college things turned for the worst. The disease spread so
quick throughout my body. It was once just my middle finger but then
all over. My muscles became a big problem. Having joint and muscle
pain was not comfortable at all. I begin losing mobility and
flexibility. My skin color started to darken. My skin on my arms and face was getting tighter. The color changes of my fingers and toes
became very sensitive to any kind of cold weather. I was told that I
had phenomenal raynaud. My hair was falling out. I couldn't sleep and
was always awaken by pain. I didn't eat as much or maybe just one bite
and that would be it. Sometimes after eating I'll vomit as if I was
bulimic. The simple things that I used to do became the hardest things
for me to do. I was relying on my parents unable to do simple tasks. I
became very weak and fatigue. Later, my relatives suggested that I get
an injection. Soon enough, I was injected with some sort of
serum/vaccine, which was illegal to use without doctor/professional
supervision. Hours after the injection, my entire body started shaking
enormously. My body felt contaminated from the vaccines and I
thought I was going to die. Luckily everything was okay and never again
was I injected with the vaccine. My parents never gave up on trying to
find the right medicines for me. My parents bought approximately $150
worth of Chinese herbs and medicines. The herbs contained dry
scorpion, dry snake and some other animals that I forgot. They boiled it
into liquid and had me drink it twice a day. It was horrible! It
tasted so awful that every time I was forced to drink it, I gagged. It
only lasted for a week and a half until I begin having shortening of
breaths. It was during the month of November 2002. I went to see my
doctor regularly and when I did, my doctor gave me a pulmonary test
and heart ultra sound test for fast irregular heartbeat. Immediately
on the same day I was sent to a hospital nearby to clarify what is
causing the problem. I was so scared because it was my HEART; the only
thing that will either end my life or give me life. Right away, I was
under the ultra sound system again. It didn't take them long to
discover fluids around my heart. Two other heart surgeons came in the
room to see the picture in the screen and they both said the same
thing. The doctor told me I would need to have a heart surgery done as
soon as possible. Then I was scheduled the very next day in the
evening. That whole time I was there, I was terrified and scared. It
was my very first time on an operating table and having a surgery. My
parents were also afraid because again, it was my HEART. They prayed
to our ancestors and asked for my deceased grandparents' guidance.
After the surgery was done I woke up with a tube inserted thru my ribs
into my heart draining out the leftover fluids. I was in the hospital
for a week and my group of friends from High School came to visit me
and prayed for me. During that whole week, I lost a massive of weight
and my appetite. I hardly ate and when I did I'd vomit and puke. I
came home after a week and I felt so much better. My skin was a
bit loosen and not as tight. My flexibility was improving. I gained my
appetite back again. Gladly and thankfully, after the surgery, none of
my organs were infected although the surgeon mentioned that I was a
bit anemic during the procedure. Just when I was getting better and feeling better, everything went back to square one. This was during
February of 2003. The joint pain and the muscle pain started again.
This time, it jazzed up. My medications also jazzed up too. I was
taking over a half of dozen medications or even more. It was from
antibiotics to vitamins. I was weaker than I ever was. I begin having dry
itchy skin around my neck and face, which cause
hyperpigment/discoloration. By this time, I only had a bit of hair
left. My hands were so stiff and I was unable to grip on anything. I
couldn't
even support myself on my high heels anymore. I couldn't get out of
bed. I didn't eat much at all and so I went down to 100 pounds or a
bit less. I recall looking so scary; this was what my mom said, "When
she sleeps, she looked dead." I felt as though someone had taken all
my strengths away from me. I couldn't even take one step up the stairway.
When I tried to, I fell a couple times not being able to get myself back
up. I was like a baby learning how to walk and how to do the
basic stuff again. I couldn't bend over to tie my own shoe. I was unable
to
kneel down and sit on the ground. I was unable to put on my own
clothes. I was unable to tie my own hair. I was a young woman stuck in
an old woman's body. My parents got very depressed and worried. They
made sure that I was never home alone for if I needed help or
something had happened to me someone will be there for me. My older
sister was always there to cook for me and helped me out when my parents
went to work. She was trying to be patient with me and at times I
would tell her how I felt and how afraid I was about my future, then
we'll both cry together. Everyone's hope was going downhill and so
was mine. I begin to feel dead. I was beginning to accept that I might
not live long. I was just waiting for the day to come so that I
wouldn't have to suffer anymore and that my family can finally be free
from my sufferings. But I prayed constantly day and night,
even when I thought about it. My families and relatives from far away
came to help me pray. Some even came to perform shaman more than a
couple times. Things didn't change at all until the middle of March.
After all the pain and suffering I went thru, my uncle finally told
us about a woman he knew that can really help me. This woman asked for
$1000 and my parents handed her the money without hesitating. She stayed
with us for a month. She knew how to work around the body especially
the muscle and skin. Yes, she knew how to massage, a type of massage
that uses menthol oil instead of regular oil. The oil is spread all
over my body while, she, taking her time to massage one part of my
body to the next. Because of the menthol oil it caused my whole body
to have a burning sensation after the massage was finished but it cools
off with a chill. Then the amazing part, it warms up your body as if
you've got body heat again. The massages lasted for an hour or two,
performed twice daily. After a month of massage, I finally felt my
body boosting back up. I was able to eat and swallow. My skin was
getting looser and softer. I felt more energy wanting to get out of bed and walk outside. Although I was still weak, tired and stiff, I
forced myself to be active again. I wasn't 100% but I knew I was going
to live a long life. In April, I was introduced to an internalist who
helped another patient with scleroderma. I was very happy because I
knew everything was going good and that I will no longer go downhill.
I cut down on the intakes of my medications, from 8 to 3. I was only
given synthroid, prednisone and norvasc but I feel great. During the
fall, my sister got married and my parents got even more depressed due
to the fact that no one would be able to help me around the house anymore, including them. But my parents never gave up on me either.
Sometime during the spring of 2004, my parents drove me to see an
Amish doctor out in Indiana. They bought another $150 worth of
vitamins from him. I tried taking the vitamins instead of the doctor
prescribed medications but it didn't help at all. I was only feeling
more pain and so I stopped taking the vitamins and continued on the
prescribed medications. Things got better and better. Even though I
recall an inflammation on my right hip. It started out like a strain
with sharp pains. It lasted for 3 months until I had antibiotic
injected into my hip. After that, I began to gain more weight. My hairwas growing back. I had more energy and I was able to be more active
instead of sleeping all day. Although the simple tasks are still a
challenge for me, I tried my very best to help myself also. This
was the turning point of my illness. Everyday I was only getting better and feeling better.
Today, 2005, I am still struggling, not as severe, but I am. It's not
easy at all. Although I have found myself being so much more active than I
ever was 2 years ago. During the month of April I went into
occupational therapy. I only attended for a month and my therapist
says I am improving. As long as I keep up with my routines and
exercises I will be fine. Yes, my mobilities and flexibilities are
improving but not 100%. I am able to tie my own hair and comb my hair.
I am able to put my clothes on myself. Taking steps up and down the
stairway is not a problem but it's still a challenge. My greatest
challenge right now is working with my flexibility and I also have a lot
of physical challenges that I need to succeed in, in the near future. And
again, yes, even the simplest tasks are still quite a challenge for
me. But it doesn't stop me from living the life that I want and dreamed
of. It doesn't stop me from walking on the face of the earth. My
parents never gave up on me and I am sure not going to give up on
myself. My goals today is to start college then graduate, get my
driver's license and continue on doing what I enjoyed doing. So far, I
am only getting better and not any worse.
Many times I do worry about my future, such as, not being able to have
a family of my own. Just because my doctor has not mentioned it to me
yet, do you think I should keep my hopes up or not? I believe miracles
do happen...I feel that I may have a good chance of being able to have
a family of my own because all my organs are healthy and working
properly. One problem is my thyroid.
Well, readers, this is my story. I hope you've enjoyed reading it just
as much as I've enjoyed sharing it.
"I have suffered and you have suffered, but I believe that suffering is
the
road to healing."
ms_nini02@yahoo.com
Updated - 12/2005 - Since the last time that I've written
my story, living with Scleroderma has been a step closer to healing. I
don't know when but deep inside of me I can feel it. And, I've recieved
quite a few emails from people suffering from Scleroderma. I didn't know
that my story had encouraged and helped others to cope but I am so glad
that it did. I am not able to help others physically but if I can help
them in any other ways, possible, it will be my honor. Not only that,
sharing my story has allowed me to open up to people more and share my
story to those who aren't familiar with the disease. With this
opportunity I am a stronger person. Thanks.
Today, I visit my doctor regularly every 3-4 months. I am still taking
the same medications that were given; Synthroid, Norvasc, Prednisone &
Vicodine. My mom is still massaging my body as usual. My appetite is
great and I am eating perfectly well with no problems at all. I still
suffer the same symptoms as before. Every now and then, I still get
minor pains but not to mention I haven't had pains for a while now. The
joint pains, that I used to have, seemed to be all numbed. But,
stiffness I still have. Tasks around the house and personal help is
still a bit of a challenge. I am getting use to it and I am also
learning so much more. Actually, I've taught myself to be more
independent than usual. I haven't seen a rhuematologist either, although
my primary doctor wants me to see one I feel that I don't need to. I've
done many research on the net and I came across some information saying
that it would be best if I see a doctor who has treated Scleroderma
patients before. Well, the doctor that I visit regularly is not a
rhuematologist but he had treated a couple of patients with Scleroderma.
Knowing that, I trust him more than a rhuematologist. Back when I was
first diagnosed, I was sent to see a rhuematologist. She didn't really
know how to treat me or prescribe me any medications. Everytime I went
to see her, all she did was gave me information about Scleroderma and
told me that it might get worsen or it might not. It seemed as though
she didn't know what to do. I stopped seeing her because she didn't
accept my health insurance. Honestly, I don't care what kind of
specialist he or she is as long as they know how to treat Scleroderma
and that they have dealt with it before.
Occupational Physical Therapy has helped me tremendously. The last time
I was there was in April 2005. After being released, during the same
month, I continued on my own with the routines. It has helped me to be
more active and energetic. It also helped my lungs to open and breathe
better rather than before when i'd always felt short of breath. I've
learned that in order for me to take longer walk I have to take my time,
even if I take baby steps. And, a lot of times it's when I am relaxed
and think openly and freely. Therapy has helped me with a lot of my
mobilities and felxibilities as well. I feel that it is slowly working
its way up. Time is all I will need.
This summer I've done a lot of out goings. I look back now and I'm
pretty amazed. Although I am not able to drive yet my mom is kind enough
to give me rides. My mom is willing to take me anywhere encouraging me
to be as much active as I can be. With all the joy that I had this
summer, "I almost forgot that I am living with Scleroderma." During the
month of August 2005, my family and I took a trip up to Mackinaw City,
Michigan. It was a trip that I haven't done for a very long time and I
am glad that I have decided to go. Before the trip, I kept doubting
myself that I won't able to enjoy myself because of my difficulties but
I did! I climbed to the top of Castle Rock and watched over the
beautiful island. You bet I was so proud of myself I almost cried.
December 2005. Winter has become my enemy. Trying to keep me warm is the
most hardest thing especially when I can't stand staying home. I find
myself debating whether or not I should go out everytime and it's not
fun at all. For this entire year, i've suffered two or more ulcers on my
fingers. Seems like one after the other. A while back before summer
started I had a ulcer on my right ring finger. Gotta tell ya, ulcers are
not easy to get rid of. It's very painful during the cold weather and it
creates puss( white stuff) under the skin which is also painful. Along
with having raynaud and bad blood criculations to my finger the tip of
my finger has turned into dried dead skin. My doctor told me that I
needed to amputate the tip of the finger or else it can affect the bone
and it will not be a good thing. He ordered x-rays and it turned out
that the bone was ok. However, he recommended me to see an orthopedist
for other opinions. I went to see the specialist and he thought
otherwise. He wanted to see if it can heal by itself, afraid that if the
tip of my finger is amputated it might not heal and that may cause
another devastating story. I wasn't so happy about the amputation at all
but to hear him(the specialist) say that, it was a great relief. I
agreed to let my finger heal by itself. Like i said, it is not easy to
get rid of the ulcer. Now, it's not a pretty thing to look at but it is
still in the process of healing. Earlier this year my grandma offered me
to go stay with her in Florida for the winter but things are going to be
complicated and so it didn't workout. Maybe next year.
This year I've met many new friends and old friends. I am utterly
blissful to have them. They make me happy and they make me feel normal.
They gave me the confidence and the courage to face all critics and down
falls of having Scleroderma. I feel bless everytime I think about them.
One good friend of mine has always encourage me to be happy and I will
live a longer life. I believe in that. Being happy and optimistic...I
think that's part of the reason why all the pains that I used to have
are gone. At least that's what I think. And, I think part of that reason
is why I almost forgot that I am living with Scleroderma too.
With Love & Hopes,
Michelle
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