My mom was diagnosed with Lupus 11 years ago. It has been a defining obstacle in my life thus far, as we are incredibly close and I am her only child; an obstacle that has taught me invaluable lessons about life and relationships. Today is Lupus Awareness day and I feel inspired to send a message out to my friends and family and to whoever else may take a few minutes to take it in….
When one falls ill with a debilitating chronic illness, special moments are not to be taken for granted. That’s why when my mom was invited to be a guest at Lupus LA’s annual Orange Ball, we didn’t skip a beat! We bought dresses and got dolled up for, refreshingly, something we could do together that didn’t entail a doctor visit, blood drawing, or discussing whether her best treatment option is steroids or chemotherapy.
Lupus is an auto-immune disease, one where the immune system becomes impaired and mistakes the body’s own organs and tissues as outside invaders – it builds antibodies to it’s own system and attacks it as if it were an outside pathogen. Lupus is systemic, in some patients it will target a specific organ, causing the patient to need life sustaining surgery(ies), and in others it affects numerous vital body functions (vision, cognition, etc). Regardless of what form one’s disease my take, pain and exhaustion are thematic symptoms.
Life changes when you have an illness such as Lupus or any other chronic disease of this degree, and it is not an easy adjustment. Someone who may have once been an outdoor adventurer and workaholic commonly becomes confined to their home for periods of days, weeks and sometimes months. They commonly lose their ability to maintain their beloved career and to navigate life’s routines such as going to the grocery store, the post office, bringing the dog to the groomers, going up the stairs, walking to the bathroom, boiling an egg, or showing up to their best friend’s surprise birthday party in time for the surprise. As the disease evolves to be a more normal part of one’s life, friends sometimes slowly drift and special events become fewer and less frequent. Those special moments we live for and need as members of a social species, such as birthdays, weddings, girls nights, boys nights, dates, etc… become fewer and fewer and loneliness can become one of this diseases most debilitating symptoms.
Imagine having the worst virus you’ve ever had, but it never goes away. Truly, imagine that.
Now imagine the philosophy that our greatest wealth is our health and when we are fortunate enough to have our health, we have the responsibility to serve one another and to uplift one another, especially those whose health – and in effect – physical freedoms have been compromised. This is a philosophy that I possess, and clearly it is a learned philosophy based on my life’s experiences.
My message for World Lupus Day this year is that while there is no cure for this disease, there is a cure for it’s worst symptom. That cure lies in the actions friends, family members and people in the community. Signs of recognition, encouragement and support, I assure you will never be taken for granted by a Lupus warrior or a warrior of any other disease or disability, and will serve as the best and most potent medicine!
I’ve borrowed this list of small and easy, yet meaningful actions and gestures that, I assure you, would never be taken for granted!
• Bring over a comedy DVD and popcorn! Laughter is a powerful medicine!
• Burn a CD and fill it with songs that make them happy. You can even make a “themed” tape. For example: songs for relaxing, songs to wake up to, etc.
• Buy nice pajamas appropriate for the illness and medical circumstance. For example, pajamas that are easy on/off for an elderly friend or someone who will be going in and out of tests.
• A box of pretty note cards and have them all be pre- stamped- this way the patient just has to write notes to whoever they want, and they have everything right there.
• When the patient feels up to it, offer to drive him or her to do something special, but short in timing. How about a manicure, ice cream or cruise to the beach? Something quick enough to get out of the house, but not too long to be exhausting.
• Send a card! It is so nice to get a “cheer up” or “thinking of you” card in the mail. Sometimes when people are home-bound the only thing they look forward to is the mail coming and when there is something nice in the mail box mixed in with bills and junk mail it will make the experience even better.
• Offer to pet-sit! Even if it is taking a pet out for a short walk, that will be a wonderful gift of a short peaceful rest. It will also put the patient’s mind at ease to know that their pet is getting attention and activity when they might not be able to.
• Send a care package. Get a box and fill it up with goodies. Remember how you felt at summer camp when you got a surprise package? It was so much fun to rip it open and see what was inside. Nothing has to be expensive, you can go to the dollar store and get fun little things. The idea is just to make the patient smile. Tip: I have always liked when people have written in a note “No thank you necessary.” I get a gift without the guilt of wanting to send a thank you note.
• Send an email. Don’t wait for the right time. Don’t feel bad because you haven’t been in touch. It is always good to get a nice email. It is always refreshing to hear from old friends. Just start writing. If you want to make the email even better, just sign it “Reply when you can, no rush.” This way the receiver gets your well wishes without having to worry about a reply.
• Offer to take your friend to other doctor appointments. Sometimes when we are so focused on one area of our health, we can unintentionally neglect other areas. Offer to help your friend keep up with other routine appointments like dentists, eye exams, obgyn, or even a regular check up. Now is not the time to let other areas of health go.
• Rent or buy a portable DVD player with a selection of movies and headphones to use in the hospital (when they wake you up at all hours of the night or you can’t sleep. I personally had this loaned to me and I loved it. It helped pass the time so much to get into a movie!
• Down pillows or any new pillows with fun pillow cases for comfort in the hospital and to also cheer up your hospital room or bedroom at home. Hospital beds are horribly uncomfortable and all the white and green sheets are very depressing. Just check what hospital rules are.
• Cute socks with rubberized/non skid bottoms, since you often have to get up and walk around, but don’t want to put slippers on. There are so many cute pairs which are very inexpensive.
• Be sure to have their birthday noted on your calendar and don’t forget to send a happy birthday card!
• Magazines that are personalized to the patients hobbies, tastes etc.
• Pretty diary – really good to write down what is going on, keep track of Dr’s instructions, and use as a memory book, of sorts.
• Ready-to-use craft kit, such as a scrap booking kit. It is good to feel productive or creative even if you can’t leave bed.
• A nice facial or body moisturizer, medications, especially steroids often dry out the skin.
• NON-hospital food! Bring the patient his or her favorite snack, or take-out from her favorite restaurant.
• Offer to do things for their apartment or house while they are sick or in the hospital. Do they need the mail taken in? Do they need some groceries bought so that their refrigerator is not bare when they get home?
• If you can afford it, hire a cleaning service to come over for the day and do a really good cleaning on the house. This is a great gift for the first day home from the hospital, and also good for when the patient is home trying to get well and is staring at all the dust piling up, but may be too weak to clean. This will help put their mind at ease, but also it will make for a cleaner healthier environment.
• Cook dinners that are easy to freeze and defrost. When you are sick you are too tired to cook, so helping to make easy to heat meals is a wonderful treat. Put post it notes on the dinners with easy instructions to re-heat.
• If you are not a good cook, send some gift cards to local restaurants or take out. The worst feeling is to be tired, but also in a financial pinch due to medical bills. This helps so much.
• Sounds silly—but just ask! Ask what you can do to help, or if they need anything.
• Bring board games to help them have fun and start interacting again. It is also a great conversation starter for those of you who may get awkward visiting someone who is sick.
• Happy nothing! Sometimes we only send our loved ones flowers or get well gifts when they are actually in the hospital or when things get particularly bad. But I think that makes the patient only feel love or attention when things are horrible. Do things really have to get that bad to be a good friend? If you love them today, show them today. If you can, send a bouquet of flowers just to brighten their day. There are so many gift delivery companies online that can send a wide variety of gifts. Every day is a struggle when battling a chronic condition, or going through lengthy medical treatments. Maybe you can make this day a bit better. Don’t wait for a reason, making your friend feel better and surprising them is reason enough. Who knows? You may just brighten their whole outlook and turn their day around.
• Help with regular every day tasks. When I am sick sometimes I am overwhelmed with the every day jobs or errands that I no longer have energy for. One of the best gifts I have gotten is when friends or family have offered to help me for 1 hour to do anything. Just having company helped make the time pass and helped encourage me to do the jobs I probably couldn’t do before. For example, in the change of seasons going through clothes or straightening your closets can be a daunting task, but if you help while your sick friend lays on the bed, then you can get the job done, feel organized and talk too.
• Bring over a warm fuzzy blanket to nap with. Something cuddly always cheers anyone up. And even if you think the person you are visiting has a lot of blankets, there is something special about the one you are going to bring- it is new, and it is from you!
• Don’t forget the standard bouquet of flowers to brighten up the room, especially if you know someone loves flowers.
You do not need to spend a lot of money. You can be thoughtful in so many ways. The point is to do something, and do something today. Sometimes it is hard for a patient to ask for help. Just do it! The hardest thing about chronic disease is that it is chronic. A friend with a really bad flu may receive flowers that week. One that is sick all the time often gets nothing. But they are not any less sick, sad, frustrated or lonely. What they need is love and support more than ever. When everyone else forgets that they are still in the struggle of a chronic illness, please remember. It didn’t go away, I they forget.
This list is intended to inspire! Apply these ideas to an elderly neighbor, someone who may be going through Cancer treatments, anyone who is in a wheelchair or who may use a walker, and of course a loved one with a chronic illness! Also keep in mind that gestures such as these have a positive trickle down effect on the caregiver as well! The best medicine is love, and even from a distance it can be very easy to give!
HELP FIND A CURE.
THERE IS SO MUCH I WANT TO SHARE ABOUT THE LUPUS LA ORANGE BALL THURSDAY MAY 8TH. DUE TO A BROKEN COMPUTER AND MY COGNITIVE DIFFICULITIES I WILL HAVE TO WAIT TILL I CAN GET SOME HELP . I AM EXCITED TO POSTS PICTURES, VIDEOS ON THIS WONDERFUL EVENT WHICH HELPS SPREAD AWARENESS, RAISE MONEY FOR NEEDED RESEARCH, SUPPORT GROUPS AND HELPS TEENS . NOT TO MENTION THEY ARE THE ONLY PLACE WHERE IN A SITUATION YOU MAY NEED A BIT OF FINANCIAL ASSISTANCE THEY ARE ABLE TO HELP UP TO 500 DOLLARS TOWARDS A NEED U ARE NOT ABLE TO AFFORD. I AM HAPPY AND PROUD THAT A I WAS ASKED TO HELP AND BE INVOLVED IN THIS . I AM PROUD TO BE ONE OF THE EIGHT LADIES TO DO THIS OUT OF MANY IN LOS ANGELES. SO MORE TO COME WHEN I CAN GET SOME HELP SHARING ALL THE WONDERFUL ASPECTS OF MY ADVENTURE AT THE LA LUPUS ORANGE BALL!! TO BE CONTINUED…….
I HAVE BEEN THROUGH COUNTLESS SURGERIES, PROCEDURES, TESTS, ETC. WITHOUT PAIN MEDICATIONS. PAIN MEDICATIONS THAT MANY PEOPLE NEED TO GET THOUGH A DAY I CAN NOT TAKE ANY!!!! THEY GIVE ME SEVERE ADVERSE REACTIONS , THIS BODY OF MINE DOES NOT TOLERATE THEM. EACH DAY IS FILLED WITH EXCRUCIATING PAIN. MANY TIMES I THINK HOW IS IT I AM LIVING IN THIS PAIN . ENDLESS STORIES WHICH ARE HARD TO IMAGINE. BACK SURGERY /TYLENOL (WHICH DOES NOTHING FOR ME), HEART SURGERY (ABLATION) , RIGHT LEG SURGERY, BROKEN BONES, LIFE THREATENING INFECTIONS TO NAME A FEW. THIS PAST OCTOBER I HAD SURGERY ON A SCALP MASS THAT WAS VERY DIFFICULT IT WAS SO PAINFUL I HAD MANY STITCHES INTERNAL AND EXTERNAL AND I COULD NOT MOVE MY HEAD IT HURT SO BAD THE ICE I USUALLY USE HURT TO PLACE ON MY HEAD. THE ONE THING I DO FOR A DISTRACTION LITERRALY BLEW UP WHICH IS MY TV I HAVE HAD FOR OVER 10 YEARS. WATCHING MOVIES IS SOMETHING THAT HELPS ME TO DISTRACT THE PAIN. INSTEAD I STARED AT MY WALLS, WAITING IT OUT FOR THE TIME TO PASS. IT IS JUST NOW ALMOST HEALED. MY DISOVABLE STICIIES DID NOT ALL DISOLVE. MY POINT: THIS IS ANOTHER REASON (SOUND’S ODD ) TO HELP OTHER’S BECAUSE WITH ILLNESS BRINGS FINANCIAL INSTABILITY. IF I COULD I WOULD OF HAD A TV DELIEVERED THAT WAS SO DIFFICULT . FOR ME THAT IS THE CLOSEST I CAN GET TO PAIN MEDICATION. THE NEXT MOST PAINFUL THING WAS JUST THIS PAST FEB. THIS SPINAL TAP WHICH HAS PUT MY LIFE INTO ANOTHER FIGHT. WISH ME LUCK TODAY NO PAIN PILL POPPING FOR ME. JUST MY ICE PACKS , ASPIRIN FOR MY HEAD PAIN, AND COFFEE.
“Your chemistry in your brain is not your character, and your illness is not your identity,”
May 2, 2014
Kristen Johnston will host the 14th Annual Lupus LAOrange Ball next week.
The Orange Ball is Lupus LA’s largest annual fundraiser and is a special evening devoted to honoring individuals who work to improve the lives of those living with lupus through medical research, advocacy, and increasing awareness. Lupus LA’s Orange Ball, chaired by Debbi and Roger Cowan, will honor Phill Lewis with the prestigious Loop Award, Lannette and Scott Turicchi with the Daniel J. Wallace Founder’s Award and EMD Serono with the Medical Visionary Award.
Orange Ball guests will enjoy an unforgettable performance by The Voice’s Judith Hill, live auction that includes high-end items and once-in-a-lifetime experiences including the Walking Dead season 5 premiere and after party, as well as dinner and cocktails.
Among the stars expected to attend are Toni Braxton (Grammy Award-winning musician), Stacey Dash (Clueless), Billy Gardell (Mike & Molly), Reno Wilson (Mike & Molly), Taylor Armstrong (Real Housewives of Beverly Hills), Kellie Martin (ER), Jon Voight (Ray Donovan), Scott Michael Campbell (The Wedding Pact), Angie Everhart (The Wedding Pact), Sandra Taylor (The Wedding Pact), Ahmed Ahmed (Sullivan & Sons), Scott Grimes (American Dad), Dorothy Wang (Rich Kids Of Beverly Hills), Josh Altman (Million Dollar Listing), Heather Bilyeu (Million Dollar Listing), Shanna Moakler(Pacific Blue), Colin Ferguson (Eureka), Titus Makin Jr. (Star Crossed), Vanessa Branch (500 Miles North) and Katie Cleary (Deal or No Deal) and more.
Lupus LA Ambassadors include Sharon Stone (Casino), Paula Abdul (Grammy-winning singer), Toni Braxton (Grammy-winning singer), Terri Seymour (Extra), Michael B. Jordan (Fruitvale Station), Melissa Joan Hart (Melissa & Joey), Gilles Marini (Switched at Birth), Kellie Martin (ER) and Meredith Monroe (Criminal Minds).
A disease with no cure, lupus affects 1.5 Million people in the US, which is more than cerebral palsy and multiple sclerosis combined. Ninety percent of lupus patients are women. The Orange Ball raises funds for Lupus LA, which promotes lupus research, awareness, education and serves the needs of people with lupus and their families in Southern California. In the past 14 years, the Orange Ball has raised over $4 Million for the cause. To learn how you can “Get Into The Loop” or purchase tickets please visitlupusla.org or call 310.657.LOOP.
WHEN: Thursday, May 8, 2014
WHERE: Beverly Wilshire Hotel
9500 Wilshire Boulevard, Beverly Hills, CA