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Learning through Lupus A Personal Narrative By: Sheila
K. Anderson Founder LupusResource.com My story begins much like the stories I have
heard from others who have received a lupus diagnosis. Renditions often foretell of years of mysterious symptoms preceding
the relief of an official diagnosis. In my case, I dealt with symptoms off and on for 13 years before my diagnosis in April
of 2008. The months leading up to my diagnosis would prove to be the most trying time of my life. Two Thousand Eight would mark an important milestone for me and my family. A milestone to be celebrated
May 31, 2008 to be exact. This would be the day my family got me back. It would be the day my head would rise wearily
from 9 years in the books. I would finally claim that gold embossed parchment paper declaring my achievement of a Masters
degree in Counseling. In August of 2007, I assumed a position as an Intern therapist to complete the requirements necessary
for graduation. In addition to that, I held a part time job, and was intent on finishing strong with a Master’s thesis
I could be proud of. Shortly after starting my internship, I noticed an overwhelming
fatigue and general sick feeling that would not go away. Spanning over the next few months, I started losing weight,
running fevers and often sported a rash that spanned over the bridge of my nose and unto both cheeks. I endured intense chest
pain that radiated through to my back, which made breathing painful. My hair was thinning, my legs bore scaly rashes, and
my nose and mouth were tender with ulcers. In spite of the pain and fatigue, I continued to push myself to maintain my twelve-hour
a day work and school schedule. The looming deadlines for my thesis and internship
hours weighed heavily on me. I knew something had to give. I decided to talk with my advisors at school to figure
out how to handle my situation. They were very understanding and helped me set realistic deadlines for completing my internship
and thesis. I quit my part time job, and devoted some energy into finding out what was wrong with me. As time went on, and my schedule was a bit more manageable my health got progressively worse. This made
me angry and depressed. I thought that I should be on the mend now that I had cut back to a more manageable schedule.
Unfortunately, I was forced to take a leave of absence from my internship with graduation just three months away. This made
me angrier and more depressed. I don’t have time for this, I thought, why did this have to happen now, of all times.
And me……..why me?
My husband and two children, ages
14 and 11, took care of me. I was physically unable to get out of bed for days at a time. When I finally could get out
of bed, I would only be up for a short time, and then vertigo and nausea would send me straight back to bed, feeling defeated
once again. I couldn’t watch TV or read because it made me nauseous. I needed darkness and quite to keep my migraine
headaches at bay. I was never one to nap during the day, but during this bout’ I could easily drift off for a 12-hour
slumber, piece of cake.
During this whole ordeal, our family was blessed with support from
our extended family and friends. My parents came to stay with us for a while and friends often took turns delivering
home cooked meals in the evenings. Our families’ needs were relayed on a prayer chain that spanned hundreds of miles. There were times that I laid in bed and cried because of the physical pain. Because I was not getting
better, there were times when I wondered if this was my fate, to be a burden to my family and suffer miserably for the rest
of my life. It was this sort of catastrophic thinking that compounded my stress level, and only added to my down time. I had
plenty of time to run the worst-case scenarios over and over again in my head. Because I felt sick for such a long time, I
wondered if I would ever be able to throw the softball around with my daughter, go on bike rides with my son, or even enjoying
simple pleasures like going out for dinner with my husband. As I lay in bed,
I tried to accept the reality that I was not going to be able to meet the requirements for graduation. It didn’t make
sense. But then again, I knew that the most difficult losses in life make the least sense. After I got over feeling
cheated, I quit trying to figure out why this happened, and concentrated on living life one moment at a time. I called into
action the very skills I encouraged my clients to use. My schooling was paying off already. I was my own client.
I began seeing an Internist who I recall seemed remarkably confident in deciding what
blood work she wanted me to have. Little did I know at that time, I arrived in her office with five out of the 11 diagnostic
criteria used in diagnosing Systemic Lupus Erythematosus. In the following days, my blood work results would add validity
to my doctor’s suspicions and I would be referred to a Rheumatologist who later confirmed a lupus diagnosis. It would only be after a short stint in the hospital with a suspected blood clot that things would start
looking up. I was prescribed Prednisone and a longer-term maintenance drug called Plaquenil. Slowly but surely I started
to feel human again. The Prednisone helped me feel not just human…..but invincible. My doctor warned me about
the temptation to exert myself as I started to feel better. I took her warning seriously, because I wanted to get through
this flare and be able to walk down the aisle to get my diploma. Honestly, there wasn’t a whole lot of anything else
on my mind. I was determined to complete at least enough hours of my internship to be eligible to graduate. I
started setting aside time to rest and just accepted that that was going to be part of my schedule for a while. Over
the final months before graduation, I had gained back 10 of the 17 pounds that I lost, my vertigo was under control, and after
3 months, I was able to start driving again. I attended class, worked on my thesis and chipped away at my internship hours.
I was not pain free by any means, but I was on the road to recovery. I was
able to get enough internship hours completed to be eligible to walk down the isle. Miracles do happen. I turned in a less
than perfect thesis, honestly not remembering exactly what I wrote. For those of you with lupus, you may have experienced
what is known as “brain fog.” During my brain fog days, I was often unable to come up with the appropriate words
to convey a thought, and so getting this thesis written was nothing short of a miracle. It was apparently a coherent piece
of work, as I received my professors’ approval. Graduation day arrived; it was especially sweet
for me because I knew I had run the last mile with perseverance. My counseling degree was unique in that it was awarded
with an added bonus, the real life experience of a disease called lupus. Lupus…. a bonus!? Yes, I am counting it as
such. You see….. lupus added the dose of reality that I needed to be able to really feel empathy for my clients. The
lessons I have learned from lupus are ones I can pass on to others. Lupus has provided opportunities for me to learn how to
grieve in a way that is not harmful, but in fact nurturing. That is, knowing how to experience grief in a way that honors
the emotional pain associated with my loss, but in the same token prompts me to count my blessings. Lupus
has taught me that it is okay to ask for help, and that asking does not make me any less of a fighter. It means that I am
playing the hand I have been dealt and using the resources I have been given. I can even accept the sporadic nature of lupus
because helps me to appreciate the days when I can do what I want and gracefully accept the days when I cannot, knowing they
too shall pass. The most valuable lessons in life are often ones learned through challenging circumstances. My prayer and
challenge for you today is to wonder about what lupus has given, not just what it has taken away. Copyright 2009 by Sheila K. Anderson LupusResource.com
Stimulus Bill Includes NIH Funding For Research; LFA Advocates To Bring Focus On Lupus
Yesterday,
President Obama signed into law the American Recovery and Reinvestment Act of 2009. With the leadership of Senator Arlen Specter
and Senator Tom Harkin, Congress secured a significant funding increase of $10.4 billion for the National Institutes of Health
(NIH). Among other provisions this bill will provide much-needed funding to support research leading to scientific and medical
breakthroughs, and ultimately new treatments. This is a victory for the medical and scientific community who are working tirelessly
to develop new treatments for people with lupus and other diseases.
Government funding for lupus research is more important than ever before. November 20, 2008,
marked 50 years since the Food and Drug Administration (FDA) last approved a new drug specifically to treat lupus. Compared
to other diseases, lupus is unique, both in its lack of FDA-approved treatments, and in the dearth of research endeavors to
identify better treatments, and, ultimately, a cure.
On March 2-3 an estimated 300 individuals with lupus, their
families, and health professionals will deliver this message to Members of the United States Congress, and serve as the voices
of the estimated 1.5 million people who have lupus, when the Lupus Foundation of America (LFA) conducts its Eleventh Annual
Advocacy Day in Washington, D.C. LFA advocates have achieved numerous successes in recent years, including a call for a national
public awareness campaign, funding for studies that determine the true prevalence of lupus in the U.S. and opening new sources
of federal agency funding for biomedical research.
The past success of our advocates and the new legislation demonstrate
the critical importance of advocacy efforts and why people with lupus must be heard by their elected officials and encouraged
to support policy that expands research funding, increases access, and improves the quality of care. We hope that you will
join us and that we can continue to count on your support in the fight against lupus.
On behalf of all people
affected by lupus, the Lupus Foundation of America thanks President Obama and Congress for supporting NIH research and helping
us move closer to finding better treatments and a cure for this disabling and life-threatening disease.
Sincerely,
Sandra C. Raymond
President and CEO
Lupus Foundation of America
_______________________________________________________________________________
PLEASE READ THIS IMPORTANT ARTICLE FROM LUPUS INTERNATIONAL:
To sign the petition
visit- www.LupusInternational.com
Energy and Independence
Act of 2007
Dear Lupus Awareness Advocate,
Congress recently passed and our President signed
into law, H.R. 6, the Energy Independence and Security Act of 2007. This bill states common incandescent light bulbs will
begin being phased out by 2012. Congress has not considered all the ramifications of this bill, and unfortunately it will
adversely affect many Americans. Their health and well-being will be compromised.
Forcing people to be energy
conscientious at the expense of other's good health is not constitutional and could create many legal issues at the expense
of taxpayers. The exemption provisions, which were written into the bill, are too obtuse and inaccessible making it impossible
for most anyone to take advantage of them.
Fluorescent and halogen lights, due to the ultraviolet rays that they
emit, adversely affect many lupus patients. It is highly recommended that patients wear sunscreen to prevent a potentially
life threatening "flare" of their condition. Lupus is an autoimmune disease. Exposure to ultraviolet light can stimulate
the immune system, causing a "flare." This "flare" can cause many complications of the illness including
kidney failure, intense physical pain, neuropathy, migraines and a variety of other symptoms.
Exposure to ultraviolet
light from fluorescent light bulbs, which are the only viable alternative permitted by the bill, is truly asking a great deal
of someone in the sanctuary of ones own home, who is constantly protecting themselves outside or in their work environment.
Lupus International recognizes the importance of energy conservation. However, our government put into law a bill
that would essentially make many Americans unhealthy.
According to the January 2008 issue of The New England Journal
of Medicine, candidate environmental triggers of SLE (systemic lupus erythematosus) include ultraviolet light, demethylating
drugs, and infectious or endogenous viruses or viral-like elements. In simple terms this also means that if you don't
have lupus the exposure to ultraviolet light emitted by the new acceptable fluorescent light bulbs can cause you to manifest
lupus or related conditions.
Lupus International at this time asks you to read statements from candidates running
in the presidential primaries. We asked each of them what their position was on the new law. Here are the responses from the
candidates who are still running:
Democratic candidate Barack Obama supports updating federal lighting efficiency
standards to ensure that new lighting technologies are phased into the marketplace. He supports legislation phasing out traditional
incandescent light bulbs, and would also support an amendment to better protect those who would be medically adversely affected
by the elimination of traditional incandescent light bulbs."
Republican John McCain, was not able to supply
a formal statement, however, his policy advisors indicated this is a concern and that he is interested in protecting those
affected by this bill.
Republican Ron Paul, "I was not able to be in Washington when the bill banning incandescent
light bulbs was voted on; however, had I been able to vote on this bill, I certainly would have voted no. As president, I
will work to repeal the ban on incandescent light bulbs. If I am not able to gather sufficient support in Congress for a repeal
of the incandescent light bulb ban, my administration will work with the Lupus International Foundation, and other parties
adversely affected by this outrageous, unconstitutional action by Congress, to mitigate the harm done by the ban".
Lupus International did not receive responses from Democrat Hillary Clinton, Republican Mike Huckabee or Republican
Mitt Romney.
All presidential primary candidates were contacted. Of those not currently in the race, only Democrat
John Edwards expressed a willingness to help and support this issue.
Please take the time to sign the Lupus International petition to get the ENERGY AND INDEPENDENCE ACT OF 2007
AMENDED to make access and economic alternatives realistic for lupus patients and others affected by
ultraviolet light.
Energy and Independence Act of 2007
Dear
Lupus Awareness Advocate,
Congress recently passed and our President signed into law, H.R. 6, the Energy Independence
and Security Act of 2007. This bill states common incandescent light bulbs will begin being phased out by 2012. Congress has
not considered all the ramifications of this bill, and unfortunately it will adversely affect many Americans. Their health
and well-being will be compromised.
Forcing people to be energy conscientious at the expense of other's good
health is not constitutional and could create many legal issues at the expense of taxpayers. The exemption provisions, which
were written into the bill, are too obtuse and inaccessible making it impossible for most anyone to take advantage of them.
Fluorescent and halogen lights, due to the ultraviolet rays that they emit, adversely affect many lupus patients.
It is highly recommended that patients wear sunscreen to prevent a potentially life threatening "flare" of their
condition. Lupus is an autoimmune disease. Exposure to ultraviolet light can stimulate the immune system, causing a "flare."
This "flare" can cause many complications of the illness including kidney failure, intense physical pain, neuropathy,
migraines and a variety of other symptoms.
Exposure to ultraviolet light from fluorescent light bulbs, which are
the only viable alternative permitted by the bill, is truly asking a great deal of someone in the sanctuary of ones own home,
who is constantly protecting themselves outside or in their work environment.
Lupus International recognizes the
importance of energy conservation. However, our government put into law a bill that would essentially make many Americans
unhealthy.
According to the January 2008 issue of The New England Journal of Medicine, candidate environmental
triggers of SLE (systemic lupus erythematosus) include ultraviolet light, demethylating drugs, and infectious or endogenous
viruses or viral-like elements. In simple terms this also means that if you don't have lupus the exposure to ultraviolet
light emitted by the new acceptable fluorescent light bulbs can cause you to manifest lupus or related conditions.
Lupus International at this time asks you to read statements from candidates running in the presidential primaries. We asked
each of them what their position was on the new law. Here are the responses from the candidates who are still running:
Democratic candidate Barack Obama supports updating federal lighting efficiency standards to ensure that new lighting
technologies are phased into the marketplace. He supports legislation phasing out traditional incandescent light bulbs, and
would also support an amendment to better protect those who would be medically adversely affected by the elimination of traditional
incandescent light bulbs."
Republican John McCain, was not able to supply a formal statement, however, his
policy advisors indicated this is a concern and that he is interested in protecting those affected by this bill.
Republican Ron Paul, "I was not able to be in Washington when the bill banning incandescent light bulbs was voted on;
however, had I been able to vote on this bill, I certainly would have voted no. As president, I will work to repeal the ban
on incandescent light bulbs. If I am not able to gather sufficient support in Congress for a repeal of the incandescent light
bulb ban, my administration will work with the Lupus International Foundation, and other parties adversely affected by this
outrageous, unconstitutional action by Congress, to mitigate the harm done by the ban".
Lupus International
did not receive responses from Democrat Hillary Clinton, Republican Mike Huckabee or Republican Mitt Romney.
All
presidential primary candidates were contacted. Of those not currently in the race, only Democrat John Edwards expressed a
willingness to help and support this issue.
Please take the time to sign the Lupus International petition to get the ENERGY AND INDEPENDENCE ACT OF 2007
AMENDED to make access and economic alternatives realistic for lupus patients and others affected by
ultraviolet light.
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