Hi, my name is Amy. I am 27 years old, happily married for
5 1/2, and Mommy/zookeeper for the last three to a beautiful little
girl/monkey. I was diagnosed almost seven years ago by my family doctor,
who I still see only him for my diseases. After almost 6 mos of prodding
poking and pricking it seems I'd hit the jackpot! Scleroderma, Raynaud's
Syndrome, Lupus, Sjogren's Syndrome, and Rhuematoid Arthritis. I stay with
him because he and his brother are very knowledgeble and experienced with
my type of chronic ailment. His brother's wife is also a scleroderma
survivor, whom they also treat. I am in great hands.
Over the last years, I have had remissions and gone active
again many times. The worst was the winter of 1997 for me. The joint pain
was crippling, I was bedridden at 23. My Raynauds was out of control, even
with meds. With the steroids they'd put me on, I'd gained nearly 40 lbs.
(for a young woman who's always been a little sensitive about poundage, I
was so, so unhappy) The February of the next year all my symptoms flew
away, bye bye, all gone... I was six weeks pregnant!! I wasn't supposed to
be able to conceive, so my Little Olivia is my miracle cherub.
It was after her birth, nearly eight weeks, I had the
worst time ever. From Nov 98 to Feb 99 I lost ninety pounds, in three
months. To top off my list of chronic disease de jour, I could now add
weakened heart and compromised lung capacity. (to this day I only run on
65%, with an inhaler) During those few months, I didn't leave my bed. I
have little memory at all. I call them "episodes". High, dangerously high
fevers to 105, lock jaw, red heat rash, terrible pain every where,
intestinal distress, nausea, dry mouth, and either extreme chills or
sweats.
With vigilance and lots of meds, I lead a somewhat normal
life. Day to day is do-able. I am a veritable pharmacy of prescriptions:
nearly 40 pills a day. That is just base stuff- antibiotics for infection,
extra steroids, pain pills, anxiety to lessen the pain pill intake... My
main problem is my hands. The ulcers are terrible. My skin is so fragile.
Just opening a soda can can land me bandaged for weeks. For example- a
blood blister in June can be a partial amputation in November. That is
where I am now. A recovering amputee, nearly. The pain of the sores before
surgery have lead me to a dependency problem with vicodin. I knew pain
from the beginning with this disease and its curse, but the pain I had in
my hands even after my second surgery, it nearly broke me. I think I am
rather strong, but to admit that is huge. I have decided to see a
counselor about it. I need help dealing with the first lost body part.
Hopefully NOT the first of anymore. The surgeon, Dr Creighton of Indiana
Hand Surgery Center is brilliant. They have made this whole experience
more than bearable.
Now that I am starting to be back again, almost normal, I
have all these feelings of inadequacy. So many people had to help with my
daughter Olivia. And as grateful as I am, and I know she was in the best
care, I am so angry at those people for doing that, doing what was my job,
and doing it well. I am so thankful and grateful, yet jealous out of my
mind. I want to be the one to do it all... Not just Olivia. I am a control
freak. I like things the way I like them, where I put them. With all these
people in my house, things get jumbled. And that makes me angry. If I open
the utensils drawer, I want to find a wooden spoon there. Or I Olivia and
(my husband) shirts folded to fit in their drawers best... So when I do
get on my feet, I make myself sick all over again playing catch up.
Now, I will say that I am married to an ANGEL. He is
husband of the year every year at our house. He smiles as he comes in the
door, he plays hooky somedays just to help out, and is truly happy to be
there. He cooks, he launders, he feeds kids and dogs, he potty trains, he
vacuums... all those wonderful necessary things, just not consistently.
But I am oh so glad he does them.
So, here I am. A not so young anymore woman, with a catch-
some stupid disease that picked me. I'm pretty well rounded, funny I
guess, A little self centered maybe, but generally a good person. I am
worried about what is going on in my body. I'd like to be able to talk
freely with someone who understands the things that are paining me,
literally paining me. I'd love an ear, and I'd love even more to be one.
Please feel free to e-mail me~ Just be sure to put
Scleroderma in the subject field so I won't delete it, I'd hate to
miss that! As a wise man one said to me, who knew not the power of his
words... Keep smiles and happy thoughts...
Nice talking to you-
Amy - amybyrd@aol.com
Update - 11/2005 - Hello again. The last time I wrote I
was 27 and coping. I am now 31, and still coping. A lot of things have
happened to me in the years that have passed.
After my surgery to amputate my finger, I had severe pain issues. My
doctors took pity on me and gave me some serious pain killers. Which led
to a dependency on Vicodin and Oxycontin. After a year and a half of
abusing the drugs, I got caught, taking extra meds in the hospital while
I was in for pneumonia. I detoxed for two days in the hospital and did
the rest cold turkey at home. It was awful. I thought my life was over.
I was so miserable. But, slowly, things started to jive again. It took
six weeks to get over, and a life time to stay clean, but I am past all
that now and am better for it.
After a bout with pneumonia in 2002 they discovered I had lung
involvement with my scleroderma. I was immediately placed on the donor
list at a major hospital. I saw a pulmonologist, who is wonderful, and
he told me of my options. There weren't many, but I felt I had to take
an action of some sort. I started a regimen of chemotherapy called
Cytoxan. Its a breast cancer drug used to help soften tissues. There
have been great stories of success with Cytoxan and scleroderma. After a
year and a half, I decided to stop the treatment. I'd lost my hair,
forty pounds and my life. The drugs made me so ill, it was worse than
having just scleroderma. No more for me. But, the highlight of this is I
was led to Dr. David Loesche. He is the man who saved my life. I kept
seeing him for anemia and other things, I took arinesp shots for my
white blood cell count. I was monitored every two weeks with blood work
and the shots.
Then, he suggested I try a new route. There were three new drugs in the
genre, and he wanted me to try one. Enbrel, Remicade and HUMIRA. I
applied to all three for experimental treatment. I am the first
scleroderma patient to take HUMIRA, and I am monitored by the doctors in
their labs. It has changed my life. Its an injection I take every two
weeks. And it hurts, oh boy does it, ...but the ten seconds of ouch mean
nothing compared to the two weeks of normal living I have after the
shot.
I have been on HUMIRA for nearly two years now. I am better. I have
fewer attacks. (I get episodes of high fevers, chills, sweats, pain,
dizziness, nausea and vomiting) Like a really powerful flu, sort of. I
have fewer of those. I actually have good days where I function as a
normal person would. I usually have four or five good days a month,
where I can forget I am ill. The other days vary from being in bed for
days, to doing some things and then taking on the world. It depends on
the weather and when I take my shots.
Over the last two years I have suffered from intestinal problems and
stomach "stuff". Like I said before, I have severe diahrea and vomiting.
I can lose thirty pounds in a couple of weeks at my worst. I get
dehydrated easily and get regular IV infusions as needed at the cancer
center where I got my chemotherapy. I still see Dr. Loesche, just for
other things now.
I have a chemo port instead of them taking blood from my arms. I had it
put in in 2002. Sessions at the blood lab were so excruciating that I
sought help with a hematologist. I had the port put in my right
clavicle/shoulder area. Access to my blood is so much better this way.
No more nightmares and no more human pin cushion...hooray.
Like I said, I lead a next to normal life. I have a schedule and we
manage. My daughter is in first grade now and goes to school all day.
So, I get up with her in the morning. I fix her breakfast, see her off
to school and then I go back to bed for as long as I need to sleep. She
comes home around two thirty, and I am dressed and ready for her fresh
off the bus. It "appears" I have been up all day, she doesn't need to
know mommy sleeps all day. We've talked to her about my health. I
explained to her that when God made me, he forgot a piece. And because
that piece is missing I have to take medicine and see doctors to help me
get along. She knows about death, but she also equates death with old
age. I told her someday I will have to go to heaven, just not now...
I couldn't do any of this without my husband. I truly don't know what I
would do without him. He takes care of everything. Bills, dishes,
cleaning, laundry, cooking, grocery shopping,...everything. And when I
feel I can, I pitch in every chance I get. He tends me when I am ill. He
does my dirty jammies. He gets me fried chicken when my stomach can
handle it. He even washed my hair for me in the bath. He is the most
tender, loving, caring man I have ever encountered and without him, I
would be lost. He has shown me the important things in life. Family and
love.
Well, that is my update. I think I have come a long way. I have grown up
a lot in the last five years. I think at least. I feel I have anyway. I
make sure I tell my husband, the savior, that I love him everyday. I
kiss and hug my daughter and tell her I love her as many times as I can
in a day. I try to laugh as much as I can. I always have candy in my
purse. I drive a convertible in the summer. I make sure to take the long
way home on a pretty day. I take the time to tell people what they mean
to me, whenever I can. I understand that I am not on this earth for very
long. Oh, I don't expect to die in the next few years, but I know I
won't outlive my husband. I smell the flowers. Look at the stars. Have
that one more cup of tea at a friends kitchen table. I mean sometimes
you just have to call in sick to school and go roller skating... I want
all there is. I want to take what I can get. I want to live my life to
the best of my ability. And to me that means telling those who are dear
to you, that they are...and it means never missing an opportunity to
smile...
I'd love to hear from anyone who needs to talk, who needs a friend, or
if you just think I am interesting- write me. Please put SCLERODERMA in
the subject line. I'd hate to delete you. I am looking for someone who
understands my pain, and I want to go through things with someone who
can relate to my hurts, needs and wants...
Keep smiles and happy thoughts...
|
