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.


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.


My Challenge to You in 2015: Learn to Trust Yourself

Fellow friends in chronic illness, I think we should agree that in 2015, we are the experts.Carie Sherman

Because, really: the only person who can be an expert on you, is you! With a disease as multifaceted as lupus, I think it’s the only way.

When you have a chronic illness, it’s easy to give everyone else power. You feel sick, so you see a doctor and start new meds. You see more doctors. You submit to test after test. You get conflicting advice. You read endless books and blogs. Well-meaning friends and family explore hundreds of options. Yet many people with lupus still wake up each day feeling like they drank a fifth of vodka and fell down two flights of stairs the night before.

It’s easy to lose trust. But I think trust can make dealing with this lupus nonsense more manageable.

I’ll give you a health-related example. Over the last year, I began resenting my sleep apnea machine. My mask had permanently dented my forehead, and I’m vain. I was strongly considering having an invasive, hard-to-recover from surgery to remove my sublingual tonsils with the hope of curing my sleep apnea (and not having to spend the rest of my life wearing an ugly, face deforming sleep mask).

I spent the last few months trying to make a decision. But I just couldn’t decide. I berated myself for being such a procrastinator.

Turns out, I had a reason to procrastinate. I just didn’t know it yet.

Back in 2011, two independent sleep studies confirmed that I stopped breathing 30 times an hour, which constitutes moderate sleep apnea. At a recent appointment, I talked to my doctor about needing a different, non-forehead denting mask. He recommended another sleep study to make sure my treatment was as effective as possible. And, they’d find me a mask that works better. So I had another sleep study in October. And guess what?

No evidence of sleep apnea.

NONE!

My flabbergasted doc said there’s zero evidence of disordered sleeping or breathing. Apparently, spontaneous sleep apnea recovery doesn’t happen every day. In fact, he’s never seen anything like it. It defies explanation. We went over every possible reason, including the unlikely event that the study was wrong. The best we came up with was 1) I’m a medical miracle (which he chuckled about); 2) Taking allergy medicine cured my disordered breathing; and/or 3) (my brother-in-law is going to LOVE this crazypants statement) I quit eating gluten and cured my sleep apnea.

We concluded that we don’t know why my sleep apnea disappeared. But I’ve been sleeping without the mask for two months now, and I feel good.

Think of all the time I wasted, angsting over whether I needed to have surgery to cure my sleep apnea. Or worse, think of how terrible it would have been had I forced myself to make a decision when I wasn’t ready

Let’s learn something from this ugly dent in my forehead. The next time you find yourself doubting…or unsure whether a test is necessary or a new pill is the answer, give yourself a little credit. Trust yourself. This doesn’t mean you have cate blanchett (yes, that’s a 22 Jump Street reference) to pick and choose what you believe about your health. To fully trust yourself, you’re required to go full in—to really listen to your body, to really listen to your doctors, to really consider all the facets of your life and what might be causing your symptoms.

And for gosh-sakes, if you believe something is wrong, then don’t stop until someone really listens. If you don’t believe anything is wrong—that’s possible, too!

You are the expert on you. Not your doctor. Or your mother. Or a blogger who may or may not have lupus and claims going gluten free cured her sleep apnea. YOU.

Will you accept my challenge to cultivate a trust in yourself in 2015?

Stay tuned for future installments on trust. Happy New Year!