8 Ideas for Making Your Home Lupus-Friendly

Home sweet home means so much more when you find yourself confined to it. During a recent Carie Shermanconfinement of my own, I got bored and paged through my husband’s Family Handyman magazine. (It’s a hobby of mine to tear out projects I want him to do. His hobby to ignore my hobby.)

Anyway, there was an article about aging and adapting your home for comfort and safety. Since arthritis and autoimmune disease go together like peanut butter and jelly, I thought these tips could be helpful. (Don’t forget to print this list for the handy-person in your life to ignore!)

1) Replace toggle light switches with rocker switches. The big on/off plate of a rocker switch can be easier for arthritic hands—you can operate it with a finger, knuckle—even your elbow.

2) Replace cabinet knobs with handles. The writer suggests replacing small knobs with C- or D-shaped pulls for easy opening.

3) Raise your washer and dryer to save your back/knees. They suggest purchasing a pedestal that raises them by 12-15 inches (or ask your handy-person to build one—directions can be found at family-handyman.com).

4) Place convenient resting spots. If you have a lot of steps in your house or long hallways, place a bench or chair nearby (ensuring it’s not a tripping hazard!).

5) Replace doorknobs with levers. When you’ve lost dexterity in your hands, it’s far easier to push down on a lever than it is to twist a knob.

6) Considering a kitchen remodel? Think about installing such items as rollout drawers, a shallow sink, appliances with touch-pad controls, and maximize drawer storage over upper cabinetry.

7) If you ever find yourself wheelchair bound, you can widen your doorways by installing offset hinges.

8) Install “invisible” grab bars. I’m far too vain to install a traditional grab bar (I’m not even 40 yet!). But I have to admit, there have been times I could have used a little extra leverage. The article says there are many options for stylish, sturdy bars. Check out the Invisia Collection or google “designer grab bars.”

Bonus Tip! The article presented a brilliant way to help someone who doesn’t have arthritis know how it limits your mobility. Says writer Louis Tenenbaum, “Hold a tennis ball in the palm of your hand inside a sock. Now walk around and try to manipulate the switches, doorknobs, and cabinet pulls in your house.”

Do you have any tips for making your home more comfortable? Share them in a comment below.


Control is a Mirage that Makes You Throw Your Cell Phone

I don’t get out of the house much. So I’m not quick to forget when someone cuts me off inCarie Sherman traffic. And getting cut off twice in the same day, by two different Chrysler 300 sedans, was unforgettable. It was no coincidence. It was a reminder of something I (sort of) learned 10 years ago, while planning my wedding.

Wedding planning made me, shall we say, a bit hyper-focused. Okay, that’s not true. I was obsessed. Totally and completely obsessed.

I don’t know how it happened. I’d set out with a mantra of Simple, Simple, Simple. But as the months passed by, I felt driven to control everything. I wanted perfection.

Which is why I flipped out a few weeks before the big day, after realizing that I couldn’t arrive at my outdoor wedding in a faded old Jeep Cherokee.

I directed what remained of my modest budget to renting a limo. And not just any limo. A brand new, white, Chrysler 300. So new, that we’d be the first people to rent it. It was elegant. It was classy. It was exactly the touch my Simple and Elegant affair needed.

All was well. Until the a few hours before the rehearsal dinner, when the limo company called to let me know that the delivery of the limo—my limo!—had been delayed.

Delayed, meaning, no classy, new white limo to drop my dad and I off at the wedding site. No elegant, charming, shiny white limo to whisk my new husband and our wedding party off to the reception.

“We’re so sorry,” the person I now hated most in the world said. “We’re upgrading you for free. We’re sending our most requested model. It’s a Hummer.”

A Hummer. My uncle drove a Hummer. It was bright yellow. It was not Elegant. It was not Classy. It was … a Hummer.

“It’s orange,” the person I hated most in the world added, as I was choking on tears. She listed other features. But all I heard was orange.

I would show up to my wedding in an orange Hummer.

I managed to thank her. Then I threw my phone.

After that call, things got worse. Much worse. Tornadoes. Torrential rains. Street flooding. Snow.

Yes, snow. The morning of June 4, my perfect wedding day, it snowed. Followed by rain, more rain.

Cue major meltdown.

It rained all morning, which meant, no outdoor wedding. Even if the rain stopped, the ground was soaked. My perfect wedding was sunk.

But here’s what’s funny: No amount of my own planning could have delivered the perfection that emerged from what I’d perceived to be a disaster.

The sun came out, just in time to for pictures. We were married indoors and it was beautiful. People still comment on it, nearly 10 years later. My husband and I have nothing but fond memories to look back on.

The Hummer was, well, orange. Bright orange. But what it lacked in elegance, it made up for in fun. Neon lights + well-stocked bar + awesome sound system = a total and complete blast with my new husband and our closest friends/family. The Hummer was a hit. And far more “us” than any boring old white limo could have been.

Our wedding day was perfectly “us.”

* * *

I’d like to say it was then that I kicked my inner control freak to the curb. But I needed a chronic illness to teach me that control is an illusion. I’m not done learning; this is a lesson for which I need constant reminding.

During that drive last week, I’d been ruminating. Running through my standard Woe is Me routine about something I couldn’t have anticipated, and I certainly had no control over.

Cue getting cut off—twice—by two versions of the car that was “supposed” to be was just the reminder I needed to chill out and accept what comes.

* * *

No one plans on getting a chronic illness. It comes into our lives like a storm, and we’re constantly dealing with its aftermath. But there are lessons to be learned in chaos.

Many lupies learn that control is a mirage: It looks like one thing. Then poof! It’s blown to smithereens. Sometimes it leaves behind something terrible. Yet sometimes, it leaves behind a bright orange hummer. Is it ideal? Not really. Is it still pretty great? Yep, it sure is.

What life lessons has lupus taught you? Share your experience in the comments below.


8 Choices I Make to Feel Good Despite a Chronic Illness

I’ve been having a hard time writing for this blog. Last night I realized why: It’s because I feel good. Who Carie Shermanam I to write on behalf of those struggling with this crap disease?

I confided in my husband. Always the voice of reason, he reminded me of everything that I have learned over the years, and everything that I must do to feel this good.

I didn’t see it before because it’s my routine. My new normal. I’d forgotten all that it entailed. So today I share with you, with the hope you might find a tip or two, the daily choices I make to help me feel good.

1) I rest. A lot. I took daily naps for a few years. On weekends, I still do. But most work days I can do without. That doesn’t mean I don’t rest. I take as many time-outs as an ornery toddler. On no-nap days, I go to bed. Early. 8:30. I’m asleep by 9:15 or so.

2) I take my meds. About 15 pills a day. Not all prescription–some are supplements such as iron or vitamin D. But it’s still a mouthful.

3) I stay home. There are a few days a week that I don’t leave at all. I’m fortunate to work from home. I’ve learned to take most meetings by phone.

4) I depend on others. My babysitter’s husband picks my daughter up for school. My husband runs most of our errands. My friends come over and they cook dinner. My family stocks my freezer and vacuums under the couch.

5) I plan ahead. If I have a fun event or people coming from out of town, I start preparing way ahead of time. I make sure the days leading up to said event and the days after are cleared for downtime.

6) I manage my stress. Every single day, I move my body. Most days I go for a morning walk and practice yoga. I meditate once or twice a day. I remind myself throughout the day to be mindful–as I’m chopping veggies or washing my hair. I read. I see a therapist. I stopped watching the news and exceedingly violent programs (esp. if children or animals are involved). I stretch and meditate and pray before bed.

7) I say no and I cancel plans. Five years ago, I would say yes to anything. Even if the thought of doing the request made my tummy hurt. I also used to slog through anything I had committed myself to. The fact is I need to listen to my body. And feeling bad still sneaks up on me. I stopped faking it and can now admit when my body defeats me.

8) I find meaning in everything. I choose to face each event–even silly things like getting a good table in a packed restaurant–knowing that I’ll receive the best possible outcome in every situation. I believe the obstacles I face are for my own good. A rejected client estimate means there must be a better project out there for me. In the face of something tragic, I work hard to accept it and learn.

These eight things help me feel pretty darn good. I still have bad days. I screw these eight things up. But my illness reminds me very quickly when I deviate from this routine. So I come back to it.

I could be doing more. Since I’m feeling better, it’s time for me to start adding things back into my life. I’d like to see friends and family more. I’d like to do more meaningful activities. I still need to make better eating choices. And I definitely need to have more fun.

For now, I’ll be content with where I’m at. I’ve come a long way on this journey to better health. And it feels good.

What changes have you made that help you feel good? Leave a comment. You never know who might need your good advice.


Second Opinions: Do I Need One? The answer is, for most lupus patients, yes.

Carie ShermanBy Carrie Sherman

This might be the easiest blog I’ve ever written. Because it really is that simple. But, if you’re like me (and roughly 70 percent of Americans), you hesitate to get a second opinion. Yet as “frequent fliers” in the medical world, lupus patients need to make sure they’re getting the most out of their doctor/patient relationship. And sometimes the best way to determine this is to get a second opinion.

One of the biggest reasons people don’t seek a second opinion is out of guilt: Feeling like your doctor will be mad at you or offended or that you don’t trust him or her. Your doc is a professional and knows the value of getting a second opinion. And if he or she did get mad or was offended? Well, that’s a good sign that it’s time to switch docs, anyway.

I personally avoided the second opinion because I was afraid that by seeking a second opinion, it would be confirmed: My health issues are all in my head. I’d finally found a doc who believed in my symptoms, and here I was, exposing myself to another doctor who might not feel the same. Well, my blood work was the same. She reviewed my endless chart in detail, and said there wasn’t much more to say about it. I was already doing what needed to be done. She did suggest a different antidepressant–one that’s known for “helping” to take away the pain associated with fibro/lupus/etc. She would gladly have taken me as a patient but understood my desire to stay with the doctor I’d been working with.

When Getting a Second Opinion is a MUST

I recently spoke with my colleague and friend Dennis Boyle, MD. He fully supports patients getting second opinions, but strongly suggests patients see another physician in these circumstances:

1. When you disagree with what your doctor is suggesting. Sometimes this is because the complaints outweigh what is being seen clinically. Sometimes it’s about being unhappy with treatment options. Either way, it’s best for both of you if you get another doc’s opinion.

2. When you have a serious illness. This comes down to finding a doctor you feel comfortable with who also has expertise in your disease.

3. When you are having surgery. When Dr. Boyle’s wife needed surgery, she interviewed three surgeons before committing. It’s about finding someone you trust and someone you like.

Don’t underestimate the importance of a healthy doctor/patient relationship. With diseases like lupus where ongoing relationships are a must, make sure you find a doc you can be with for the long-term. “No doc is the right provider for every patient, so making sure you are happy with your doc is important,” says Dr. Boyle.