7 Tips and Tricks to Remember at Your Next Doctor’s Appointment

1. Think of your doctor as a less hilarious version of your best friend. And at your appointment, it’s time to Carie Shermantell all. Sure, symptoms can be embarrassing. But your doctor knowing that you forgot your ATM pin (again) or you have a rash in a place you’d prefer not to mention could be critical to you getting the best care.

2. Speaking of your BFF, bring her with you. Or your husband or mom or your aggressive assertive next door neighbor. Having someone else listen and ask questions can mean less pressure on you.

3. Write it down. Did your doc give you new info or instructions in your appointment? Write it down. Did a new symptom pop up? Write it down. You can’t remember your ATM pin. Believe me when I say, you’re not going to remember this either.

4. Own your behavior and choices. If there are three pills left in the bottle, you did not finish that course of prednisone. Starting an exercise program tomorrow does not count as a “yes” to your doctor’s “are you getting exercise” question. Lupus requires that you take a hard look at all aspects of your life. If you feel rotten, are you getting enough rest? If you feel good, what have you been doing right?

5. Your doctor gets to decide what information is irrelevant. Lupus is super-complex. Let your doc decide which symptoms he cares about. Over the course of years (and yes, you’ll be seeing your doctor for many, many years), patterns emerge. The more you and your doc understand about your lupus, the better you’ll be able to manage your symptoms.

6. It’s on you to address your concerns. Remember, no matter how caring your doctor is, she is not thinking about your problems after your appointment. So don’t leave the office until you’re satisfied with the info you received. This is your body, and you’re the only one who lives in it. Get the answers you need to feel better.

7. Remember that lupus baffles elite medical minds. It’s okay if you’re confused, too.


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.


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.


Four Ways to Do More with Less: Applying Business World Lessons to Life with Chronic Illness

 Carie ShermanBy Carie Sherman

The last time I thought about the statement “do more with less,” was back in my corporate life. The sentiment had been thrown around by management for a few weeks when suddenly, our cushy styrofoam disposable coffee cups were replaced with a non-insulated version that burned my hand. I decided then that I hated the prospect of doing more with less.

But today I had a realization: THIS is what lupus asks of a person. THIS is the challenge. Not to sit down and admit defeat and bury ourselves in the memory of our once healthy lives, but to learn how to live with less. I’m greedy. I want to do more, despite having less.

So I consulted the business world and found an article titled “Four Ways to Do More With Less (Really!).” And I stole each idea and applied it to chronic illness. I hope these ideas help you, too.

The Business World Says In Order to Do More With Less, One Needs To…
“1. Specify ‘must win’ battles.”

In business, this means declaring priorities in order to focus on essential, value added tasks. Here’s how I applied this concept:

My priorities: 1) My family; 2) My friends; 3) My business; 4) My writing. All of my essential “to-dos” usually get covered.

Did you notice any missing priorities? I did. “Health” was a no-show on my first attempt at a list. Yet you and I both know that it must be a priority or nothing else will happen. So I added a few items that contribute to my overall physical and mental health: 1) Seeing my docs and taking my meds; 2) Eating right; 3) Exercise; 4) Stress relief.

The term value-added makes me crazy, but in this case it almost makes sense: I can add “value” to each task by thinking strategically. For example, I could take my little girl to the Farmer’s Market for fresh veggies and family fun. I could skip happy hour and hike with my BFF. I could use my calendar better so my deadlines, appointments, and refill reminders are all in one place. And in that same calendar, I could schedule meditation breaks and writing time.

How can you add value to your day-to-day tasks?

“2. Avoid the trap of routines…evaluate work processes regularly to ensure that they’re aligned with changing work demands.”

Back when I had to leave my house to go to work, I had a morning routine. I’d wake up at the last minute to rush out the door and to rush to my desk. I’d eat what hadn’t spilled of my made-for-car-breakfast (using our regular plates, which infuriated my husband) and wash it down with a paper cup of coffee while responding to each and every email in my inbox, checking the news, and clarifying my day’s priorities.

Now that I work from home, I no longer eat breakfast in my car. But I held on to this routine, and it has to go. I’m most creative, energetic, productive in the hours before 9 a.m. Tasks that would take me three hours at 3 p.m. take me 30 minutes at 7:30 a.m. Yet more often than not, I fall back into this routine. It wasn’t effective then…it sure as heck isn’t effective now.

What do you do out of habit that keeps you from being effective?

“3. Treat training as a process, not an event.”

At first I thought this wasn’t applicable. The line for “training” in my freelance business might as well say “there’s always next year.” But then I realize how much I missed this aspect of my corporate life. It was filled with education and training. I took classes on computers, on productivity, on design, HTML. Heck, I got a graduate degree.

But my illness has given me a whole lot of life lessons in a short period of time. And one thing I’ve noticed (and I’m sure you have, too) is that I take steps forward. Then back. It’s not Diagnosed and Done. It’s lifelong learning when there is no cure.

“4. Provide ‘specific freedom to act’…clarify the scope of employees’ authority, so that fear of overstepping boundaries doesn’t become a disincentive to taking risks or making even-simple decisions.”

Chronic illness is a boundary. And, it’s a scary boundary. I don’t have a boss giving me “specific freedom to act.” But today, I’m giving myself permission to better understand the boundaries my illness has given me so I can stop living in fear of my body. I still have the authority to act and take risks, and so do you.

I never thought I’d look to the business world for advice, but these tips made me think about ways I can be smarter with the energy I have. Now tell me, how have you learned to do more with less?