I have SLE, which stands for Systemic lupus erythematosus. It is a long-term autoimmune disorder
that may affect the skin, joints, kidneys, brain, and other organs.
Each person experiences it a little differently, but one thing is the
same for all of us, as of today, there is no cure.
I don't normally post this sort of subject matter on this blog. I have another Faith Based Blog called Remnant Postings where I've talked more about my health challenges. However, I decided to post this particular blog here on Mind Crumbs
because I have had many people ask me about my Lupus over the past
couple months, and I don't want my Faith to be an obstacle in the
sharing of my information and encouragement with someone who might need
it just because they may not share my religious beliefs.
Recently, I was in a forum on a Lupus website and there was a woman who said that she had just been diagnosed with Lupus and she wanted people to share information with her regarding what worked for them when coping with the symptoms/diagnosis of Lupus. She wondered if there were any natural remedies that help with symptoms. Her question was basically, "I have Lupus, now what?"
My hope is that someone will find this to be informational and/or helpful. I want to encourage people to see that it is not all out of our control. And if you are a friend or loved one of a person with Lupus, try to be patient, understanding, and compassionate. Spend a little time researching Lupus (not too much...it can be scary), and just remember that you don't have to FIX IT (you can't anyway), but just BE THERE. You can't always see our illness because our own body is attacking itself from the inside out. But just because we look like you, doesn't mean we feel the same.
A great website that I referred my family to when I was first diagnosed, was http://www.butyoudontlooksick.com/. Read the article 'THE SPOON THEORY'. If you have Lupus or a similar disease, copy and paste it and send it to your friends and family! It will help them to understand why you can't do the same things that you used to. My husband still talks to me in terms of 'how many spoons do you have left today?'. (That will make more sense after you read it)
Finally, after all of that, here is my letter to the woman I referred to at the beginning of this post:
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Dear (name left blank on purpose),
I am very sorry to hear of your diagnosis, but I would like to
encourage you that although your life will change with Lupus, it is still possible to live a good life. You have to be careful what you listen to however, because when I was first diagnosed, several people told me that they knew someone or knew OF someone who had died from
Lupus. That was very scary and
disheartening to me, not to mention NOT HELPFUL! People just don’t always think before they
speak and sometimes they just don’t know what to say and/or perhaps don't fully know what they are talking about. But the more I know, and the longer I live
with Lupus, I have discovered that the majority of people LIVE with Lupus...not
the other way around. That is encouraging. For me, I have family members who also have Lupus, but even so....I still did not understand much about it until after I was diagnosed.
Lupus has forced me to slow down and to constantly be aware of eliminating as much
stress from my life as possible (it is an ongoing process). Of course
every person with Lupus experiences it a bit differently, but one thing that seems to touch most people is stress. Stress seems to be a huge trigger for flare ups for most people living with Lupus.
I've been diagnosed for 9 years now. I take medicine but some of the simplest and
most helpful tips are lifestyle changes.
They are invaluable when you realize how important they are to how you
feel.
IMPORTANT CHANGES
YOU CAN MAKE ARE:
* Getting sleep! If I am overtired or struggling with
insomnia, my symptoms are DRASTICALLY worse.
And I am not exaggerating, lack of sleep can really make my pain much worse. Guard your sleep as if it was as valuable as Gold.
* Reduce Stress! Weed out dramatic people in your life. I'm going to say that again....remove toxic people from your day to day life! When they are family, limit your
interactions (especially when in a flare up).
Take time for yourself to relax (it's best if you can do this daily,
even if it is just for 15 min's), let your world stop...put on relaxing music,
take a bath, meditate, etc. I am a
Christian so I will read my Bible, but do something that allows you to 'fill
the tank' so to speak. This step is SO
important! I also had to stop
volunteering to do so many things, I had to limit my time out with friends and readjust things a bit. I began having
friends over more than going out, or talking on the phone instead of meeting in person. We
meet at coffee shops instead of longs days out.
(Don't get me wrong, you don't have to stop doing everything fun, but
you will learn your limits.)
* Listen to your
body! It will tell you a lot if you
pay attention. I find that I must pay attention before I've gotten to the place where I've done too much (like being at the point where I'm tired or my
body hurts). I've discovered that I can
overdo it and not even realize it until the next day. I might be having a garage sale, going
shopping, or just standing on my feet a long time and I feel fine while doing
it, but the next day I can wake up feeling awful and dealing with serious pain, inflammation,
and fatigue. Pay attention as you live
day to day and figure out what activities makes things harder for you or how
long you can do certain activities without suffering later (this is a trial and
error process but you'll get there).
* Eat Well! I have found that eliminating processed foods
helps. Eat whole foods (foods that are
about the same as when they get picked or harvested). Eat organic when you can (I notice benefits
from reducing the chemicals I'm ingesting).
Farmers markets are great. Many
local farmers may not be certified organic but they use as few chemicals as
possible and produce great food that had not been processed for traveling
thousands of miles via trucks, etc. The
farmers are usually happy to tell you their farming practices. Buy meat from local farmers if you can (split
a beef with a friend or two if you eat meat)...find someone who lets their
cattle graze and eat a natural diet with minimal use of antibiotics. Better yet....eat Venison, Elk, or Wild fish
(be careful, some lakes and other locations can be stocked with farm raised
fish). I didn't change my eating
overnight...its been a process stretching many years, but each change is
progress. When faced with a food choice,
try the best option available. And
remember, eating fresh fruits and vegetables isn't just a better option; they
provide much needed nutrients for your body.
* Surround yourself with
good people! There is an old saying
that says 'We are a product of our environment'. While I don't totally support that saying,
there is some truth to the idea that if we are surrounded with negative
people...we tend to see things as worse off and it causes more stress
(obviously a bad byproduct) and is unlikely to help you. But if you surround yourself with people who
encourage you, lift your spirits, make you laugh, love on you, and who support
you...you are likely to be less stressed and you will enjoy your life much
more!
The good news is that all of these things ARE within your
control! There is so much that is
unknown about Lupus and varying ideas of how to treat the symptoms. I encourage you to take control of your life,
be informed and don't just expect that a Dr. will give you everything you
need. They just can't and I find that
often they are just making educated guesses regarding what will help you. Never be afraid to ask questions or tell them
the details of how you're feeling or what hurts. Be your own health advocate. And getting a second opinion regarding new treatment is something you might want to consider as well if it is financially feasible.
None of these things seem like rocket science, and they are
all sort of common sense things that most people know....BUT don't be fooled
into thinking that they are not important.
Even though we know these things, you may find it is much harder to put into practice than you think. And
as time goes by, we discover the true benefits of having these things in
place. You can take all the medicines
that a Dr. can prescribe, but if these other areas of your life are out of
order, you will still struggle. I know
this from experience.
I know this is a very long response. These are just things I wish someone would
have shared with me when I first found out I had Lupus. I know it may seem overwhelming, but remember
these are things to do over a period of time. You
don't have to change everything today. I
would like to also share with you that because I have Lupus and have made these
changes over the years, my life is better.
I have way less stress, I am surrounded by friends who love me and
encourage me, I value the things more that really matter in life, I don't take
as much for granted and I focus on stopping to smell the roses (so to
speak). I'm far from perfect, but I am much better than I used to be!
One thing my Dr of many years shared with me the day I was
diagnosed was this, "Jessica, you can do this! Don't allow this to beat you or ruin your
life." I personally had a long story of
medical issues before my Lupus diagnosis, and I had just gotten through 3 back surgeries and a spinal
implant to help with permanent nerve damage in my leg when I was told I had Lupus....so I was very distraught when I was
told I had Lupus because I thought I was finally feeling better after 3 of the worst
years of my life. I didn't want to hear that I had another thing to battle. But my Doctor was right...I am surviving with Lupus. I have good days and not so good days, but it
is possible to manage it!
Be encouraged.....and know that some people with Lupus have
infrequent flare ups. And I've heard of
many people who have adjusted the things I mentioned above and DRASTICALLY reduced their
flare ups. When I can manage my stress
and environment well....I do SO MUCH better!
I hope that this helps and isn't just completely
overwhelming.
Best Wishes,
Jessica
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LUPUS TRIVIA
The following celebrities suffer from Lupus:
- Tony Braxton (Singer)
- Seal (Singer) - A Lupus rash was the cause of his facial scarring.
- Terri Seymour ("Extra" Correspondent and former girlfriend of Simon Cowell)
- Nick Cannon (Actor, Host, Comedian, & Musician)
- Tim Raines (Athlete/Baseball)
- Portia de Rossi (Actress, Wife of Ellen Degeneres)
- Barbara & George Bush's Dog Millie (Yes, that seriously made the 'celebrity' list. Ha!)
- Kelly Stone (Sister of Actress Sharon Stone, the two started Planet Hope)
- Mary McDonough (Actress best known for her role as "Erin" on "The Waltons"
- Michael Jackson (Singer)
