For all the Lupus Warriors who are fighting each and every day: I see your struggle…I know what you are going through! I am
keenly aware of the unpredictability of your disease, never knowing from day to
day whether or not you are going to wake up in pain so intense that you can
scarcely put your feet on the floor. Every joint screams at you because they
are all incredibly inflamed and swollen, and you run fever every single day. Without
warning, your head hurts so badly that you must remain in a darkened, quiet
room because your heightened sensitivity to light and sound is nauseating. I
know about having to crawl to the bathroom because the slightest head movement
brings on pain so intense that you surely cannot stand upright and, more often
than not, you are so sick you are unable to hold anything down. I understand
what “brain fog” is. I also know firsthand the fear you feel when you have “strange”
symptoms that are difficult to describe to the many doctors you see. I know
what it is like to have been told more than once that your situation is unusual,
even complicated. I know the pain that the simple act of breathing brings on
due to inflammation of the lining of your lungs (pleuritis), the joints of your
ribs (costochondritis) or the lining of your heart (pericarditis). I recognize
the red rash that spreads across your face like a butterfly, and understand why
you wear long sleeves, jeans or pants instead of shorts, and floppy hats on
sunny days; I identify with your need to slather your skin with sunblock when
you go out into the sun. I have felt the same alarm you surely must feel as
your once beautiful hair falls out by the handful.
I know about extreme and rapid weight loss that signals a
flare, and then just as suddenly, the weight gain and swelling (not to mention
the risk of other long-term, life-altering side effects such as glaucoma,
diabetes, cataracts, osteoporosis and avascular necrosis) that come from the
massive doses of corticosteroid you must take to calm that flare down. I know
all about chemotherapy, lengthy and repeated hospital stays, kidney biopsies,
liver biopsies (and all kinds of other biopsies), multiple surgeries, MRI’s, CT
scans, x-rays and lab tests. And I know the disappointment that comes with
every positive test confirming involvement of one or more of your major organs,
including your heart, lungs, kidneys, central nervous system and peripheral
nervous system. I feel your pain as you go through physical therapy or rehab to
try to get back some semblance of what you have lost to this terrible disease. I
understand what it means to learn to walk all over again.
I know what it is like to do your best to be the parent you
always wanted to be and recognize your deep desire to cheer your children on,
participate in their activities, and provide food, shelter and clothing for
them. And I understand what it feels like to sob brokenheartedly after your
children have gone to bed because you are certain that you have failed them…you
simply could not push through to do all the things that needed to get done. I
know the toll this disease takes when it steals away the career you loved, and I
identify with your sense of hopelessness as you sink to the floor in grief and
cry over yet another medical bill that you know that you cannot pay. I know,
and my heart aches for us all.
But I also know that we are WARRIORS…fighters who never give
up, no matter how fearful we are or what comes our way. We have HOPE because we
know that research is ongoing, and for the first time in 50 years, there are
breakthroughs which lead to better treatment options. There are doctors that
are very knowledgeable about Lupus, that truly care about their patients, who
spend countless hours worrying and researching in an effort to find the right
treatments for them. There was once a
time when only Plaquenil, Prednisone, and chemotherapy were available; today
there is also Humira, Benlysta, Rituxin and IVIG; for the most stubborn and
invasive of disease processes, there is even stem cell transplant on the
horizon. Perhaps one day soon, it will be available in this great country.
My prayer for you today is that you don’t lose heart, that
you hold on to hope. I have found that holding tight to my faith in God through
Christ Jesus has made a huge difference in my ability to cope. Through all that
I have been through (and it has been a lot), God has never failed me and has
always, always proven Himself faithful. When I have been at my weakest and most
ill, He has worked miracles, lifted me up, and breathed new life into me. When my money ran out and I didn't know how I was going to pay my bills, He made provision. He is Jehovah Jireh -- the God who provides, Jehovah Rapha -- the God who heals. He is my rock, my
strength, my foundation and my refuge. He IS my Hope! May He bless you with all
you need to make it through with courage and grace…day by day, moment by
moment.
God bless you, I love you...
“Be strong and
courageous. Do not be frightened, and do not be dismayed, for the LORD your God
is with you wherever you go.” (Joshua 1:9)
