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?


Bring Back the Fanny Pack and Other Lessons from Getting Lost in the Woods

Carie ShermanBy Carie Sherman

The BFF and I recently took a hike. We got lost. Well, not really lost, per se. Let’s just call it misinformed about the direction we had taken. We didn’t have a trail map. We “kinda” remembered the name of the trail we planned to take. And we “kinda” turned a 3-mile hike into 8.

Relax. We were in Castlewood Canyon State Park. We were able to see a physical human establishment for at least half of the hike and never spent more than 30 minutes between other groups of hikers–most of whom were refreshed and beginning their hikes from the various parking lots our trail took us past. And we had plenty of water.

The park does have decent elevation gains. My guess is at least 40,000 feet.

Here’s the best part: I wore a fanny pack. It was awesome. The BFF protested but knew if she took a real stand against my fanny pack I might start reconsidering the helmet I threatened to wear because of an article I’d just read about head injuries. She’s a confident girl and can handle when I’m strange, but she does try to stop me from humiliating myself.

Anyway, chronic pain folks, take note: I always carried a backpack but it kills my back and shoulders, likely due to the terrible hiking posture that one gains when one constantly stares at one’s feet. Turns out, my hips are good for hauling. I wholeheartedly encourage you to come to the darkside. Let’s Bring Back the Fannypack!

Who am I kidding. Fanny packs probably are back, for all I know about fashion and the like.

Anyway. 8 miles. Me. If I had known it would be 8 miles, I never would have started. I haven’t gone that far since 2010. And I didn’t realize it at the time, probably because the sheer elation of not needing to call in a backcountry search party for a day hike just minutes from urban areas, but it was a big deal. I hiked 8 miles. In this body. This body that two weeks ago wouldn’t allow me to lift my arms. As you know, I have an entire blog dedicated to my body failing me.

And here’s a kicker: I could walk the next day. And the day after that. And even the days after that, which were leading up to my period, when typically all hell breaks lose and I move only when forced. My body was…good.

Now, I’m not saying that I’ve cured my mind, body, and soul here. But I learned a valuable life lesson on this hike, and it’s a lesson you can apply to just about any circumstance under the sun.

Sometimes you have to get lost. Sometimes you just have to work way harder than your brain believes you can–even if the only reason is because you were forced. If you have the desire–and someone awesome by your side–you can really surprise yourself.

I have a lot of goals right now. One in particular scares the crap out of me. I have no idea what I’m doing. But I know I have to work and work hard and rely on the crazy cool people in my life.

I might not bring back the fanny pack (assuming, of course, it’s not already back). I might whine and complain. But I’ll stay on the dang trail til the end. Because I can.


6 Tips for Pacing Yourself

Carie ShermanBy Carie Sherman

With the long holiday weekend approaching, I needed to take some time to consider my plans and how they might affect my health. So here are a few tips I’ve considered. And please, share yours in the comments below.

1) Join the right pack. Whether you’re with family, friends, or a combo of both, find someone whose energy level rivals yours. For me, this means attaching myself to my toddler (who still needs a nap) and my grandmother (who also needs a nap). Express your need to take it slow–you may be surprised by the people among you who would revel in the opportunity to sleep during the day.

2) Do what excites you and skip the rest. Take a look at the planned course (aka, your weekend events). What are the “must do’s?” What’s planned that you won’t be sad about skipping? Perhaps the family barbecue is a must, but you couldn’t care less about seeing fireworks. If you’re hosting, make a plan. For example, I don’t mind cooking, but shopping wears me out. (Of course so does cleaning up…which I also make known…seriously not such a bad thing!)

3) Fuel up and hydrate. When your energy levels are limited, skimping on food and water can be a disaster. I’m learning to eat more frequently and drink far more water than I think I need. It’s helped me to find some “go to” snacks that stay fresh and don’t melt (I like KIND bars). Also, find an easy-to-carry a water bottle. I like a cup with a lid and straw; my BFF swears by her Camelbak bottle while my hubby is a Nalgene fan. Bonus: Check out the Pillid bottle from Nalgene–Pill-Lid (get it?). It’s kinda perfect.

4) Practice safe sun. Even if you’re not sun-sensitive, the sun can drain. Scope out shaded areas and pack an umbrella. And don’t forget your hat. Of course, you already know sunscreen is a must. I forget to apply it, so I start each day with a body lotion with SPF 50. I also just found a lip gloss with SPF.

5) Rest before you’re beat. Check in with your body as the day progresses. Is it signalling that it’s time for a break? My hands tend to burn and tingle when I get close to my edge. I also notice that my body stops regulating temperature well (If I’m asking my husband “is it hot in here?” or “are you cold?”, it’s time for a rest). Short breaks can keep you in the fun for the long haul.

6) Prepare mentally and stop comparing. If I go in to an activity with a positive mindset, I’m less likely to feel bad if I can’t keep up. But if I begin said activity feeling sorry for myself, it’s a downward spiral to Pity City. So I say to myself, “Today I will do what I can do” and leave it at that. It’s a conscious decision to stay mindful of myself, my body, and what I CAN do.

How do you pace yourself? Share your tips in the comments–we’d all love to hear them.

On behalf of everyone here at Lupus Colorado, cheers to a fun–and healthy–July 4th weekend!