Hello everyone. My name is Ana. I have scleroderma. I read many stories
written by people who suffered from the same disease, but one in
particular touched my heart, and brought tears to my eyes. I read her
story and recognized her agonies in my own life. I kept on reading, and
being encouraged by her fight for life. At the end, there was an update
on her situation, and it read: “She passed away in December…” Tears went
down my face and my heart broke in pieces. She lost her fight. But I did
not get scared. It gave me the courage to fight for my life even harder.
I was diagnosed with scleroderma in August of 2004, and dealt with the
symptoms since March of 2004. My doctors were not able to determine what
my symptoms meant for over five months. My disease began with a terrible
pain in my fingers. I worked at a retirement home at the time, and
during meal preparations, I started having problems with opening the
cans, jars, and holding things. I was hurting all the time. My days at
work became shorter and shorter, and I lost a lot of time, but I was
trying to figure out why I was hurting so bad, and why some everyday
tasks were becoming impossible for me to do. People used to tell me that
I am just stressed out, because I had a lot on my plate at the time. I
was a graduating senior at the California State University of Chico, and
getting ready to get married that May of 2004, a week after the
graduation. I disagreed that it was just stress that was causing my
symptoms, as I was not really stressed out that much. I was enjoying
getting things done for the wedding, and greatly relieved that I was
almost done with school.
Several times at work, I was caught crying, and was holding my right
hand, and the fingers. The right index finger was swollen and getting
better a few times. Sometimes I thought that I was just retaining water
for some reason, and that was why my fingers were swollen, and why I
could not take my engagement ring off, if I wanted to. I went to the
hospital ER a few times, and they did the standard blood tests, but of
course, they could not find anything. I was always let go home with a
prescription for vicodin and told to rest. I was getting angry. I have
always been a healthy person, and just three months before all this
started, I also graduated from the police academy, in December of 2003.
Finally, my then fiancé said I should see a doctor. I went and saw
someone who was trying to find out what I had, and made several guesses.
I remember he asked me if my fingers changed color because of the cold
weather or water, and I said yes. They would become purple, blue, red,
and then white. After a long research, he concluded that I had Raynaud’s
phenomenon. He explained to me what that was, and my fiancé and I were
very puzzled. By May of 2004, a little before my wedding, all my fingers
were swollen, and I could barely put my wedding rings on during the
ceremony. By July of 2004, my fingers were like potatoes, swollen, they
became very tight, stiff, and by August of 2004, they started to bend.
The fingers on my right hand were worse. In July of 2004 my feet also
started to hurt. My toes were getting stiff, and my feet and ankles were
stiffening and hurting as well.
A couple of months later, my right forearm started to get stiff, and it
eventually spread all over my right arm. In the mean time, I was
bouncing from a doctor to a doctor, and eventually, I was sent to see a
rheumatologist in Chico, California, where I lived at the time. His name
is Dr. Singh. I am still going to him. We did a lot of lab work, and he
said that my ANA test was negative, which he said was a great sign. My
husband and I asked why it was such a great sign, and he said that it
meant that I did not have scleroderma. My husband and I looked at each
other and did not know what that was. The doctor tried to explain a
little bit, but did not want to go into details.
Later on that day, in the evening, I drove off to run some errands, and
when I came back home, my husband was sitting in the recliner in our
bedroom with tears in his eyes. I sat down next to him, held his hands,
and asked what was wrong. He was holding a medicine book in his hands,
and he had it opened at “scleroderma.” He told me that he was so
relieved that I did not have that, and even though most of the symptoms
described in the book were the ones I had, the ANA test was negative,
and the doctor told us that we had nothing to worry about. My husband
was relieved, and we both cried, and he promised me that he would be
there for me no matter what happened.
About a month later, my face started to stiffen, my lower legs were
hardening, and my feet and my hands hurt terribly. A couple of months
later, they redid the ANA test, which at this time was positive, and
with all the symptoms and pain, I was diagnosed with scleroderma. Our
worst nightmare came true. I started having G.I. problems, acid,
constant and uncontrolled burping, difficulties swallowing, and so on. I
also started having problems with my personal areas.
I was getting worse and worse with every week that passed, with every
hour, and it was time to face my first winter with this disease. It was
terrible. The pain became so bad, and the symptoms worsened like you
would not believe it. The trips to the hospital and doctors were my
everyday occurrence. I was on so many medications for different things,
and I was getting worse.
It was March 4, 2005. I was exhausted, weak, coughing, and had
difficulties breathing. My husband said that he was calling an
ambulance. He was so scared of what he was seeing. My skin all over my
body was turning blue, and I was fighting for every breath. The
ambulance came, and they carried me onto the gurney. They started an IV,
and I was so weak, yet tears were going down my face. My husband was
following in his car. When we got to the ER, after a few hours, they
said that I had bronchitis, and then they said that I had pneumonia. I
was let go home with antibiotics. At 4:45 a.m. on March 6, 2005, I woke
up, and went into the computer room, and sat on the recliner. I was
feeling so weak and sick, but I did not want to wake up my husband,
because he was supposed to wake up at 5:30 a.m. to go to work. At 5
a.m., my husband woke up, and found me in the other room, and I was not
responding to him right away. I started to get sick to my stomach, and
he put an empty trash can in front of me, and I started vomiting. He
said: “That is it. We are going to the ER. You do not look good.” I
started crying because I knew he was going to miss work. I felt bad, and
he said: “I do not care about that.” We waited in the ER for hours. I
started breathing easier, and started feeling better, and I told my
husband at 10 a.m. that I wanted to go home and that I felt better, and
I wanted to go to sleep. My husband said that there would be no way for
him to take me home. We waited a bit longer and then they called us in.
I was in a wheel chair. I was sicker than a dog again at that time and
very weak. They poked me ten times, took blood, checked my oxygen in the
blood, did EKG, and X-rays. They started panicking, but I was too out of
it to react. They told me that they were waiting for a room for me, in
the Intensive Care Unit, because I was being admitted. They did the
heart ultrasound, blood work, MRI of the lungs, and breathing
treatments. My heart rate was 145 beats per minute lying down.
My regular doctors came to the hospital and told my husband that I had
three to six months to live. He was scared, so he went to the hospital
chapel and prayed to God to spare my life. He was pleading with God, and
was crying. He trusted God, and He gave him the strength to fight for
me. I had doctors telling me that I should get on the heart and lung
transplant list then, because the lists were too long. I got so angry
and told the doctor that that was not true. The doctor left, and all I
wanted to do was punch him where it hurts. How dare him put a number on
my life, and tell me this? My husband was there for me every minute of
the day. He took a week off from work so that he could be there for me,
while I was at the hospital. My family was there too.
When my breathing became OK, and I walked through the hallways a few
times, they released me on March 13, 2005. I was so weak, skinny, and
exhausted. By this time, I’d lost 28 lbs and went from 176 to 148 lbs.
In April of 2005, my husband and I went to Thomaston, Georgia, for a
weeklong ministry class, which was called: “For My Life.” I learned how
to deal with so many of my issues there, and to trust God for
everything. I learned again to have faith in Him, and his plans for us.
When we came back home, to California, I got off almost all my meds,
including Norco (for pain). I was not hurting for several months, and it
seemed that my symptoms went away, and that I was fine, except for my
appearance.
In September of 2005, I started having skin problems again. I started
getting extremely cold. I was also getting depressed, I hurt like never
before, I started hurting in my joints too, and being very weak. My
shins also started to hurt bad.
My trips to the ER started again. Many times I would go to the ER for
the shortness of breath and my doctors told me that I would have to go
on chemo therapy because the scleroderma went to my lungs. After many
tests, and some time, there were shown to be wrong again. According to
my doctors, I was supposed to be dead by now. I am still here after 18
months.
In January of 2006, I started to have severe knee, hip, and shoulder
pain. I also had right shin and ankle pain. I was in and out of doctors’
offices, ER, and my pain meds were no longer working. I was always so
tired, and just wanted to sleep all the time. On 1/30/06, my doctor put
me on Duralgesic pain patches plus hydromorphone pills. This was not
working either. The doctor increased this to higher doses after three
days. It again did not work. The doctor put me on Oxycontin 40 mg twice
a day plus OxyIR (Oxycodone), 5 mg up to 4 X a day. I stopped OxyIR
after a couple of days, because it did not work, and I had a bad
reaction to Oxycontin. This was not working, I was reacting bad to it,
it made me into a monster, so after 7 days of being on it, I told my
doctor that I want to get off of it, or I would kill someone. I told him
that I want to go back to Norco, because even though it did not
completely work, it worked somewhat, but it did not make me into a
monster. I was again in and out of the ER for the weakness in my body,
legs, shortness of breath, high pulse, high blood pressure (recently it
reached 186/115).
I started having very bad headaches that would make me vomit, and hurt
for days. The doctor said that they were muscle tension headaches,
because of the stiffness of my skin and muscles. They did a few CT scans
and MRIs of my head, and it showed that I had an aneurysm. After many
prayers and a lot of rest, it was gone, a new scan did not show anything
anymore, and I did not have to have a surgery.
Now, my hands are crippled. I am not able to type fast anymore, and it
is hard to find appropriate keys on the keyboard. I used to type 50 wpm,
and now I use single fingers. I cannot get dressed or undressed by
myself. My husband helps me with everything, from taking showers,
massages, getting things for me, helping me with dressing/undressing, he
cooks, cleans, does laundry, loves me, and is my best friend. I do not
know what I would have done or where I would be today, if God did not
send him into my life. Many people tell me that I am lucky and I know
that, because many guys would bail out on someone with a severe
disability, but I was blessed with my husband, my best friend. He loved
me even when it was hard to do so. I cannot do anything by myself
anymore, and admitting that, was the hardest thing to do, but having my
husband, who is my best friend, by my side, changed the way I look at
life now. He and God are my encouragements, he prays for me every day,
he takes care of me and understands me like no one ever will, unless
they had this terrible disease, or a loved one with it.
My husband and I have been married since May 29, 2004. He makes this
disease easier on all of us, he is my support, my help, my love, and he
is such a great father too. He had two kids from his previous marriage,
and the girl is 9 and autistic, and the boy is 10 and healthy. With a
disabled daughter, and his disabled wife, his hands are full every day.
But, he manages to care for all of us, love us all unconditionally, and
be there for us every minute. I love him with all my heart and we are
best friends and soul mates. At the beginning, I used to feel like a
burden to him, because I could not do much, and he had to do it all, but
he reassured me that I should not worry about that. Also, my two
beautiful two step – children, whom I feel like my own, are a blessing
to me. My husband tells me every day that he loves me, and I tell him
the same. When I am down, he lifts me up, when I am sad, he makes me
laugh. He has such gentle spirit and heart, and I am so blessed with
him.
If you would like to talk to someone that shares the difficulties of
this disease, you need a shoulder, or a prayer, please write to me. When
you write, please put “scleroderma” in the Subject line, so I would not
accidentally erase it. Thank you for reading my story. I hope it helped
with what you are dealing with. Write to me, and I will listen, or if
you need an encouragement, I will be here, and pray if you would like.
Always, Ana.
ana.alston48@sbcglobal.net
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