Stormy Paige
New Port News, VA
Living with Systemic Lupus and Discoid Lupus for 22 years
Stormy’s lupus journey began when she woke one morning and felt an odd feeling in her hip. She
describes the pain as excruciating “It was like a knife was in between my hip and leg, causing me to
fall when I tried to stand or walk”. Stormy describes trying different options to relieve herself from
the pain, but the pain persisted. Stormy then decided to be examined by a doctor, who diagnosed
her with Bursitis, and was given the medications to treat that disease. As time passed, Stormy
noticed that the medications she was using to treat the condition were not working, and she also
began to experience more advanced symptoms which included, body aches, pain, fatigue, rashes, and
hair loss. Stormy states that “By the time I was finally diagnosed, most of my body was
affected in some way, but no one knew what was wrong”, because of the lack of understanding
as to what was going on with her health, many concluded that her health issue was mental. “I began
to research each of my symptoms that I had, and the diseases that could cause the
symptoms I was having”, Stormy recalls.
Stormy was officially diagnosed with lupus in March of 1996, when she moved to Virginia from
South Carolina. She decided to go to a doctor to discuss the issues she has been having, but the
result of these visits were very discouraging. Stormy describes, “I was not getting any good
answers, so I decided to make a list of tests and asked her doctor to perform them.” When
the results of these tests came back, the doctor concluded that she had lupus and that she had only
10 years to live. Stormy describes seeing 10-15 doctors to get this diagnosis, and currently takes 43
different medications. Story shares that she faces many obstacles related to lupus. “As time passed
on, I began to develop other diseases such as diabetes, epilepsy, chronic pain and fatigue,
insomnia, fibromyalgia, and much more”! Her doctors came to the decision that it was unsafe
for her to work, and was pushed into early retirement. She describes losing her nursing career as a
very difficult point in her life, “It was devastating, because I worked so hard to get my career
moving in the right direction”. Stormy states that there are times where she must use a walker or
cane to get around, and even get dressed. Stormy describes her worst flare: “Both of my hips were
affected, my muscles began to feel tense, and pulled my feet inward, which caused severe
pain”.
Stormy also describes having difficulty speaking during this time. As a result of the severe
flare, she was hospitalized for 2 weeks. “My body was dehydrated, and all my levels were either
too high or too low, my body was at war and almost won”. Stormy hopes that others will read
her story and know that they are not alone. “No matter what doctors say about how long you
will be here, don’t focus on all the negativity that comes along with having this disease”. She
states that support is one of the most important factors in coping with any disease, especially for
lupus. “I talk to people and share my story with many because I am a living testimony of
how good God is”. Stormy describes another difficult time in her life, “I almost died in October,
and after I got out of the hospital, my crusade is much stronger”. She states that she uses social
media outlets to spread lupus awareness, “I like to use these platforms, because many of us at
one point or another have felt that no one cares about lupus”. She has her own website, in
which she helps to inform others about this cruel disease. Stormy goes on to say that she tries to
reach out to others at doctors’ appointments and would like to start a support group in her area,
closer to her home and other efforts to help advocate for those who are suffering from this disease.
“Many of my doctors have given up on me because they get frustrated because they do not
know why my body is doing some of the things its doing”. Throughout this experience,
Stormy has become a strong, driving force in the lupus community, and hopes to educate others
with her journey of strength and hope.
Thank you Stormy for sharing your story!