5 posts tagged “chronic illness”

Member Christine’s Instagram takeover for World Lupus Day

Posted 3 months ago by

In case you missed it or you’re not on Instagram, on World Lupus Day (May 10), PatientsLikeMe member Christine took over our Instagram to share her experiences and help raise awareness of lupus (May is Lupus Awareness Month). Christine is a native Californian, a social butterfly, an advocate and a member of our 2018 Team of Advisors (check out a quick video about her here!)

Hi! My name is Christine and I am a lupus patient. One of my goals is to help spread awareness and educate others, so today I’ll be sharing key moments in my life with lupus and lessons I’ve learned along the way.

Did you know that 1 in 4 lupus patients lives with a comorbidity (multiple chronic illnesses occurring at once)? In addition to lupus, I’ve been diagnosed with 34 other conditions. My case is complicated and severe, and while I know that there is not much that can be done for me, I hope that my experiences can lead to a better understanding of lupus and will inspire others to speak up, take action and find a cure.

“You make a living by what you get. You make a life by what you give.” —Winston Churchill

Finding the right treatment for lupus can be difficult. Most patients, myself included, will try a number of different medications in order to achieve remission. These medications, while they may help, can also have very toxic side effects. In fact, some of the side effects can be worse than the disease itself. I have had three drugs that have caused significant damage to my body. I now have hydroxychloroquine retinopathy, avascular necrosis and toxic encephalopathy as a result. Though scary, it is a reality for so many patients.

Despite the setbacks, the experience has taught me how important it is to advocate for yourself. As a patient, it’s your duty and your right to do your research. If you are uncomfortable with a drug or the side effects are too severe, make sure to speak with your doctor. Remember, no one knows your body better than you do.

“I learned a long time ago the wisest thing I can do is be on my own side, be an advocate for myself and others like me.” —Maya Angelou

Dealing with an illness isn’t easy, and going through it alone can make things even more difficult. Support is one of the most important aspects of dealing with any disease, including lupus. While family and friends can be a crucial part of your support system, I’ve found that it helps to seek advice from others not involved in your immediate circle.

Many people frown upon support groups as a place where people go to complain and commiserate, but most support groups are nothing like that. Finding other patients to connect with is an amazing experience. To be able to talk to someone who knows exactly what you’re going through makes all the difference in the world.

My support group is not just a support group — they are my confidants, my motivation, my inspiration and, most importantly, my friends. Regardless of your condition, I’d encourage you to reach out to other patients, both online and in person. There is so much that can be learned and shared among us.

“Be strong, be fearless, be beautiful. And believe that anything is possible when you have the right people there to support you.” —Misty Copeland

With beauty playing such a pivotal role in our society, women are often criticized for changes in their appearance. About 90% of lupus patients are women, which makes dealing with the disease even more difficult since lupus can wreak havoc on both the body and mind.

The photos above were taken only one year apart and that adorable little girl is now a teenager. I had been on high-dose steroids and put on 70 pounds within the first month. I was unrecognizable and my self-esteem gone. At my heaviest, I weighed in at 220 pounds, all due to medication.

It’s not easy to go through the physical changes of the disease, but I’ve always found the light at the end of the tunnel. Looking back, I wish I had taken more pictures during that time. I missed out on so many memories because I couldn’t stand the way I looked. It took a while but I’ve learned to embrace myself, regardless of my weight.

“Beauty begins the moment you decide to be yourself.” —Coco Chanel

Recently, a friend of mine from high school passed away. My heart breaks for his family and wife. His death has brought to light the question of our mortality. As someone with a serious chronic illness, I have been told more times than not that my chances of survival are slim and I’ve even had my last rites read to me.

The thought of death is often far more real for those of us with chronic conditions. It looms in your mind and forces you to question the things in life that you thought were once so important. It’s a valid fear and a harsh reality, often dismissed by others. My post is not meant to be depressing, but rather to encourage you to live your life to the fullest, be happy and help others. With that, I’ll leave you with a final quote. Thanks for following along!

“Twenty years from now you will be more disappointed by the things that you didn’t do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover.” —Mark Twain

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13 spring cleaning + laundry hacks when you have a health condition

Posted 5 months ago by

Pain, fatigue and other symptoms can make spring cleaning and household chores… stink! We’ve rounded up some tips, tricks and life hacks for cleaning and doing laundry when you have a health condition.

1. Make a plan. Write out your cleaning to-do list (or find a free printable one online) and tackle your top priorities first. Pace yourself, even if it means spreading your chores out over several days or weeks. Think of spring cleaning as spring/summer cleaning – no rush.

2. Set time limits. Chelle Iredale, a writer for The Mighty who’s living with fibromyalgia, knows her cleaning limits: “15 minutes is a good amount of time for me,” she says. “Do what you can in that amount of time, then take a break. Re-evaluate how you’re feeling after each chore so you don’t overdo it.” Try to squeeze in some quick scrubbing or dusting sessions during TV commercial breaks.

3. Become a “no shoe” household. So what, if a few guests grumble? This rule will cut down on dirt. “When it comes to your health, do what’s best for you – not the masses,” Chelle says.

4. Pick products that make cleaning easier. It might be time to retire that ol’ mop and broom, writes Justina Bonilla, another Mighty contributor. Time-saving products like cleaning wipes, disposable dusters and wet mops can work wonders. You can even buy dust mop slippers and microwave steam cleaners these days. Also, shop online for cleaning supplies so you can take stock of your current stash and remember what you need.

5. Make things fun and comfortable. Listen to music. Or a podcast. Or an audio book. Anything that entertains or motivates you will make your cleaning session a little better, Justina says. Also, try to stay as comfy as possible by doing some chores sitting down (such as cleaning the kitchen table or wiping floor boards) and using a padded surface (think: garden kneeling pad or thick yoga mat).

6. Give into the urge to purge. Spring feels like a new beginning, which can make it a little easier to part with old clothes and clutter. Go with it! Less stuff = less work. While you’re at it, ditch some of your baskets and bins where junk mail and unworn shoes pile up.

7. Ask for help. Know someone who loves to clean and declutter? Time to phone a friend! And next time your birthday or the holidays roll around, consider asking for gift cards for a cleaning service or a new gadget (think lightweight or robo-vacuum) that’ll make cleaning easier.

Bonus: 6 laundry shortcuts! The Mighty recently shared a list of 24 laundry hacks for people with chronic illness, and here are a few favorites:

  • Skip the hamper — leave the washing machine lid open and ask everyone in your household to put dirty clothes straight in the washer at the end of the day.
  • Invest in a “grabber” to pick up dirty clothes off the floor.
  • Set a stool or folding/camping chair near the washer/dryer to sit on and help prevent fatigue.
  • Rather than sorting by color, sort into two baskets: one for pants, and the other for tops, socks and underwear — which makes for easier sorting/folding later.
  • If you have closet space, quit folding and hang everything on a hanger.

Got any tried and true tips for tackling chores with a health condition? Join PatientsLikeMe today to connect with others and swap ideas like these!

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