Wednesday, February 27, 2013

Perfecting the lupus nap

A few days ago, I took the perfect afternoon nap. I fell asleep the moment my head hit the pillow, I woke up on my own, I wasn't too hot or too cold, and I woke up completely rested. Ah...perfection.

I get several of those a week, afternoons when the girls cooperate, the phone doesn't ring, and I'm in a good state of mind to sleep. One of those "perfect naps" transpired while I was away in Memphis. It was a whopping 2 1/2 hour nap - and it was glorious! It was so quiet, the bed was oh-so-comfy, and I wasn't trying to listen for little munchkin activity in the background.

But here's the thing: the "perfect" nap doesn't always follow a particular set of circumstances. Sometimes it's short. Other times, it's long, like on my vacation. Sometimes I'm in my own bed. Other times I'm away from home. Most of the time, the perfect nap does involve me waking up on my own, but not always. If I've been able get the rest I need, and someone or something wakes me up, the nap may still qualify for a perfect one. It just depends on how I feel when I wake up.

So that's what I've learned to go on - how I feel. If I wake up rested and refreshed after an hour and 15 minutes, that's my nap. But if I wake up after 2 hours, and I still feel fatigued, I try to get in another 30 minutes. Granted, I HATE when that happens, but life with lupus isn't always perfect, and my body doesn't lie. Taking a little more time to get rid of that exhausted feeling is always worth it.

I've found this to be the best gauge in almost every aspect of lupus, too. Whether it's exercise, medication, symptom activity, or lifestyle factors - my body is the best judge. If I feel better physically afterward,  it was a good idea. If I feel worse, I need to figure out why. Trusting myself to interpret my body's signals has turned out to be one of the most valuable tools I have in my lupus survival kit. It enables me to talk more candidly with my doctor, evaluate my treatment more accurately, and manage my disease more effectively, all so that I can live well, despite my illness.


So here's to continuing to listen to my body and trusting the signals it's sending me, even if I don't like what it's telling me!

*Note: This current "listen to how you feel" strategy comes only after desperately, yet ineffectively trying to IGNORE how I felt for several years. So don't fool yourself - if you're trying to CONVINCE yourself that you feel good, when you actually don't, you need to re-read chapters 1-3 of Despite Lupus! 


Monday, February 25, 2013

Pillbags now available at the shore!

I'm pleased to add another Pillbag retailer to the list - this time, in Ocean City, New Jersey!

Yolo SolYolo Sol, the Sun Protection Store, features stylish yet protective UPF clothing and accessories. One of their tag lines says it all - "You won't believe how beautiful sun safety can be." And now, to add to their stylish collections, they carry Sara Gorman's Pillbags. Hooray!

I am particularly thrilled to be in their store for a couple of reasons: 

One: we travel to Ocean City, NJ every summer to spend a week with Johnny's family. So now, I'll be able to have some fun in the sun right down the street from a Pillbag retailer. I'll be sure to stop in and say "Hi" while I'm there. I'll probably pick up a sun protective frock or two while I'm there - we lupites always have to watch out for that sun!

Second: the owner has a soft for lupus - because she's a lupite, too! Diagnosed in 2011, she found, just like many other lupus patients, that the sun triggers flares and makes her sick. When the only sun protective clothing she could find was outdoorsy, she decided to do something about it. She opened Yolo Sol in Ocean City, a store that specializes in sun protective clothing. Thus, she's now made it possible for people with sun sensitivity to be able to dress in style! Click here to read a great feature about the store and owner in a recent issue of Atlantic County Woman, found in the bottom right corner of the page. 

So if you're at the shore this summer, be sure to stop in Yolo Sol in downtown Ocean City, NJ, located on Asbury Ave. You never know, you might run into me there, too!

Friday, February 22, 2013

The Patent Interview: Considering the outcomes




Guess where the Pillfold Sebastian™ and Pillfold Bordeaux™ found themselves last week? In the offices of the Patent and Trademark Office, where they helped me to illustrate the utility patent I've applied for!



It was very exciting to take my products in for a bit of "show and tell". I didn't know what to expect going into our  "interview", since my two design patents were approved outright - no discussion needed. I knew the interview wasn't going to be adversarial, but I didn't know if I was going to have to defend my claims (the parts of my patent application that define the scope of patent protection I'm seeking), or if it was going to be one-sided, where the examiner talks and my patent attorney and I just listen. In the end, it was a great meeting, and the two examiners we met with were extremely helpful. We walked away with some valuable information, and will be moving forward with our application, in hopes that my utility patent will be approved. Fingers crossed!

Although I wasn't terribly nervous about the meeting itself, I was a little uneasy about the consequences of the interview. What if they shot down my patent altogether? What if my claims weren't sufficient? What if they found a "container" that was just like my Pillbag?

Thus, I spent a little time running through different scenarios in my head beforehand, so that I could prepare myself for the worst-case scenario (which is never as bad as I've built it up in my head.) It's always helped me to imagine myself "the day after" an event/decision/crossroads like this. If I were to wake up "the day after" the interview, and they've shot down my patent, what will I do? Will I put up the money to start over? Will my attorney and I spend more time and money to explore our options? Or will I just scrap the patent and move on? Most importantly, are any of these options really that bad? Won't it just be a matter of making a game-time decision and moving on? Life will go on, and I'll either be closer to a utility patent, or not.

I used to do "the day after" game all the time when I had major lupus decisions to make - whether it was starting a new medication, asking for an accommodation at work, or making a major change to the way I dealt with lupus.

Consider my decision years ago to ask my company to go part-time. I exhausted "the day after" game, and came up with the following:

If I wake up "the day after" I've asked to go part-time, and my company's said, "No", then I'll have a decision to make about full-time work, as it relates to my health. At least I'll know where the company stands, and Johnny and I can start brainstorming other options (refining my request, seeking a new position, alterations at home), based upon the information I now have.

If I wake up "the day after" and they've said "Yes", then I'll have to make some emotional adjustments to working less, and some financial accommodations to earning less. And I'll have the responsibility of objectively evaluating the effect that working less has on my health.

If I wake up "the day after", and I've opted not to approach my company at all, then I'll have to wonder if they'd make an allowance or not, if working less would help my overall health, and how I'm going to face a day's work in the meantime. (And I'll probably make myself even sicker over the stress of not knowing!)

So in this case, it became obvious I needed to approach my company. None of these outcomes, except not approaching them at all, was so overwhelming or traumatic that I couldn't overcome it. In the end, I think it was juggling all of these outcomes in my head that made the decision seem so overwhelming. Separating them so that I realized I'd face just one set of consequences made it much easier to deal with.

Of course, post-patent interview, I wasn't faced with any of "the day after" decisions at all, since the meeting wasn't structured as such. It wasn't like an episode of "Shark Tank", where you either get the deal or you don't. The examiners gave us some constructive feedback, we were able to get clarity on our wording, and we know exactly how to proceed. A perfect outcome, if ever there was one!

Wednesday, February 20, 2013

Listen Up, Doc! webinar questions answered

As a follow-up to the Listen Up, Doc! Webinar I did with the S.L.E. Lupus Foundation in NYC several weeks ago, they've just posted a list of questions asked by listeners during the event. While I didn't have time to address all of the questions during the hour-long webinar, they were such good questions, we didn't want to let them go unanswered! Here are just a few of the questions (along with my answers). You can see the entire post here.


Question:

How do you suggest engaging a significant other who is unwilling to talk about her lupus to the point where she becomes angry - literally - with me? The standard response I get is "I'm fine! I don't want to talk about that! Stop asking me about that!” When I ask about going to the doctor's office with her, I get the response of "I don't like anyone to go to the doctor's office with me! I've never liked anyone to go to the doctor's office with me! I've always gone alone so it doesn't matter!" I just give up at that point and don't bother continuing the discussion. Thanks for your feedback.
It’s always tough to extend a helping hand to a lupus patient who is trying so hard to be independently strong and capable, in the face of her disease. I can tell you first hand, asking for help and accepting it were major obstacles for me to overcome! Perhaps asking your significant other to specify in what areas she feels you could help would put it back in her court.  I always appreciated when my family would ask how they could help, rather than assuming that it was “x” or “y” that I needed help with. That way, I could help direct them to areas of my life with lupus where I was willing to open up and ready to accept help, rather than their inserting themselves in areas (or activities) where I wasn’t prepared to share the burden. Going to the doctor was one of the latecomers for me, too. (In fact, I’ve done another talk on this very subject – giving yourself permission to ask for help and accepting it…and one of my examples is allowing someone to accompany you to a doctor’s appointment!) 

Question:

Can you speak about Lupus Limbo (i.e., your doc *thinks* Lupus but won't actually diagnose)?
I understand that Lupus limbo can be a very frustrating experience – and although I’ve never been through it myself, I’ve talked with many friends and family members who have waited way too long for an official diagnosis. My suggestions to those I’ve spoken to in this situation are the same that I would give a fellow patient that has been diagnosed:
Ask as many pertinent questions as you can. If there’s something you don’t understand or are wondering about, bring it up. If there’s something that you think might be relevant, but aren’t sure, ask about it. Whether or not you have an official diagnosis doesn’t change the fact that you should have a complete understanding of what your body is going through.
Push for a plan – try to get an idea of where you and your doctor are headed. Is he okay treating you without a diagnosis? What does he plan to do differently? What is he looking for that would prompt a diagnosis? Maybe the lack of diagnosis, in your case, doesn’t change anything for him. Maybe it changes everything. Whatever his answers, you need to know what they are, so that, together, you can continue to work toward wellness, diagnosis or not.
Don’t let the lack of a diagnosis stop you from taking the steps you need to start living well. If you suffer fatigue, take a nap.  If you have joint pain, minimize it the best you can. You don’t need a label to acknowledge that your symptoms are real and debilitating. Take care of yourself first, get the diagnosis second.

Question:

I'm newly diagnosed and am having a hard time sharing my illness with people. Is this normal? I don't want people to treat me differently.
It’s absolutely normal! It can be so challenging to introduce the concept of you with a chronic illness to others – it’s hard enough to wrap your head around it yourself. I remember very specifically struggling to figure out who I was, now that I had lupus. I didn’t look different, and, like you, I didn’t want others to act differently around me, but everything was different – from the way I felt the moment I woke up to the moment I went to sleep. And in my experience, the sooner you can acknowledge the change, and begin to embrace it rather than fight so hard against it, the sooner you can start feeling better. The more comfortable you become personally dealing with lupus on a daily basis, the easier it will be to broach the subject with others. From there, you can begin to re-establish your identity with this new illness in tow.


Monday, February 18, 2013

Lupus and Lymphoma - No clear link!

Good news on the lupus front: a recent study found no clear indication that the occurrence of lymphoma is mostly driven by drug treatments for lupus. Also no clear association was observed between disease activity and lymphoma risk. Both very positive items of note! 

The treatments that were studied included cyclophosphamide (Cytoxan), azathioprine (Imuran), methotrexatemycophenolate (CellCept), anti-malarial drugs (e.g. Plaquenil), and steroids (e.g. prednisone).

Years ago, when I considered starting Cellcept, the risk of lymphoma was a major red flag for me. Granted, not red enough to dissuade me from taking it, but it was still a concern. In the end, I opted to start Cellcept, despite the risk of lymphoma, knowing that the combination of medications I was already taking wasn't sufficient to keep my disease activity under control. I needed to step up my defense, and my doctor thought Cellcept was the best option. Turns out, he was right! 

Cellcept and I had a lovely 3-year long relationship - just long enough for Cellcept to do its job, and for my body to regain strength and stability. I suffered very few side-effects during those three years, and only decided to stop taking it when I decided to try and get pregnant. Thankfully, my doctor was able to switch me back to a combination of Plaquenil and prednisone without any spike in disease activity at all. That dynamic duo, along with the hypertension drug Cozaar (to control protein in my urine), seem to be doing the trick still today. Add a baby aspirin and a few calcium pills, and there you have my daily drug regimen. Which reminds me - time to fill up my Pillfold for the week! 

You can read more about the lupus-lymphoma study here




Friday, February 15, 2013

A mad dash for a Pillpouch!


Doh! The Pillbag Lady forgot her pills! On a recent trip to Indiana in January, I left home without my medication. The girls and I were flying home to visit my parents, and just as I was packing up all the last minute items (like my pills), I got an email that said our flight was delayed 45 minutes. And then it was delayed an hour. And then I got word that it was cancelled. And THEN I got an email that said it was leaving as originally scheduled. Eek! So as we dashed out the door to try and make our previously-delayed-then-cancelled-then-restored flight, I unknowingly forgot my pills.

When we arrived at the airport, our flight was indeed cancelled, and we rescheduled to fly out a couple of hours later. I’d realized during the re-booking process that I’d forgotten my meds...so, of course, the delay was a blessing in disguise. We had enough time to dash home, grab my pills, and return to the airport. My pills are always at the ready, conveniently stowed in a Pillpouch in the drawer of my nightstand, so it took just a second to grab and go. I was so quick, in fact, that I was able to stop and pick up a prescription at my neighborhood pharmacy that had been filled earlier that day. I figured I might as well travel with a full arsenal of medication, if I have the chance.  I secured the newly added pill bottle in its elastic band of the Pillpouch, threw it in my purse, and off we went!


So the benefits of using a Pillbag certainly held true for me: convenient, discreet, and secure – particularly when I remember to bring it with me!

Wednesday, February 13, 2013

Lupus Memories - Pill Splitters and Downton Abbey??


Baby Darwin needs a Pillfold. Just after the New Year, my precious pug developed what we think is just a bit of arthritis in his lower back, so the veterinarian prescribed a muscle relaxer and an anti-inflammatory (NSAID). Per doctor’s orders, we’ve weaned him off the muscle relaxer, but I think the NSAID is here to stay. Good news is that he’s doing great, and is back to his old pugly-self. And he definitely looks forward to his peanut butter-covered pill every morning and night. (Wouldn’t we all?!)

In addition to his new NSAID, we’ve just recently added two other medications, albeit temporarily, to help him with his recovery from a doggy dental he had just a week ago. Darwin currently takes the NSAID, a pain killer and an antibiotic morning and night – which is definitely cause for a paw-friendly Pillbag. Several of the pills he takes require that I split them…and that’s definitely taken me back to my early days with lupus. I can’t tell you how many prednisone pills I’ve split over the years. Tapering down from 60 mg at one point gave me ample opportunity to split pills on a regular basis, and I became a pro. I had this little paring knife that had one irregular jagged tooth that stuck out just a bit to allow for the perfect split. Interestingly, I never invested in a pill splitter. I don’t think I ever wanted to really “commit”. The clunky pill box those pills went into was bad enough…but we all know what I’ve done about that unsightly little matter.

So as I split Dar’s pills, I think about how lucky I am that I’m not in that business for myself any longer. I take my 5 mg of prednisone every other day, no splitting required. I plan on keeping it that way.

Another reminder of my old lupus days came when I was watching an early episode of Downton Abbey. (Yes, I’m hooked…but we’re only through the first season…so don’t tell me ANYTHING!). There was a scene depicting a patient in the hospital suffering from dropsy, and fluid around the lining of his heart. Cousin Isobel recommended removing the fluid with a needle, and as the scene progressed, the fluid was extracted via needle and transferred into an IV bag. Watching that scene took me back to the couple of times I had fluid surgically removed from the lining of my lungs, via a big old needle just like the one on television. I remember watching the fluid fill the IV bags in complete disbelief, shocked and bewildered that there could actually be that much errant fluid in my body. It’s been a long time since I’ve had to reckon with pleural effusion, and I hope it stays that way. It didn’t look anymore pleasant or glamorous on TV!


Monday, February 11, 2013

Lupus Courage: Defined by an Email


I'd say I receive about two dozen emails, comments, and questions from various people around the world every single week. Some folks want to talk "lupus", others are interested in the Pillbags, and still others are interested in exploring the world of publishing and/or manufacturing. Many of them want my take on the subjects mentioned above, while others just want to connect with someone who might understand. In either case, I thoroughly enjoy reading and responding to these messages, as they remind me why I blog about life with lupus week after week, why I wrote my book, and why I invented the Pillbags. Every time someone reaches out to chat with me, I'm energized and encouraged to keep at it. And so I do. 

And while I've fielded hundreds of emails over the course of the last four years, there's one thing that continues to blow me away with each note I read: the courage it takes for each person on the other end to hit "Send". It's taken me years to be able to talk about and share my experiences with lupus. Sure, I'm as chatty as they come today. But in the beginning? Oh boy. The subject of "lupus" was strictly off limits. I only wanted to talk about it on my own terms, and the thought of reaching out to someone to ask for help, pose a question, or solicit advice was completely foreign. No way was I willing to put myself out there, admit my naivete, or confess that things weren't A-OK.

No - I thought it best to try and negotiate this crazy, daunting world of life with a chronic illness on my own – certainly not the best decision I've ever made. I was just so worried about what others would think. I didn’t want to appear like a frightened, struggling, broken young lady, even though that’s exactly what I was.

Once I found a support group, of course, I started to open up. But I did so slowly. Cautiously. And with great reluctance. Even two or three years in, I still wasn't comfortable with lupus or myself - and it showed. I continued to struggle physically and emotionally, and my inability to make progress was the result. I kept fighting it, trying to figure out how I could ignore the disease and make it go away. It never did, and I eventually changed strategies. Oh, but what an unnecessarily long journey that was.

So with every note I receive, I literally applaud the efforts of the author. What a wonderful step they’ve taken toward coping with this nasty little disease.  Taking it upon themselves to reach out, connect with another, and search for a better way to deal with lupus is a feat in and of itself.
                                                                                  
And when someone asks after my Pillbags, I think it’s so cool that someone else out there believes it’s possible to still be stylish, despite a medicine-dependency. That as pill takers, we’re not destined for a world of plastic clunkiness and unsightly pill dispensers. We can take our daily meds, and do it with a dose of style.

And I feel equally as inspired by the people who reach out to me about publishing or manufacturing. People reaching out in order to make the world a better place--be it through written word or an invention of their own. There can never be enough ingenuity in the world, and I'm thrilled everytime someone invites me to share in that process.

So keep the emails coming, continue commenting, and keep the ingenious ideas flowing. You motivate me every time my in-box dings!

Friday, February 8, 2013

Traveling Logistics: Off to Memphis!


I’m off to Memphis this weekend, to take part in the filming of a fundraising lupus video that I’m very excited about. I’ll tell you more upon its release, but I’m thrilled to be participating in the effort. Who doesn’t want to raise funds to fight this nasty little disease?

Of course, traveling to Memphis to do the film shoot required some planning and strategizing, as is often the case when it comes to lupus and travel.

Finding time to travel to Memphis was the first step. I had another trip scheduled at the end of January, and I wanted to allow enough downtime between trips to make sure I wasn’t pushing my limits. My hosts for the Memphis weekend were extremely flexible, and scheduled the shoot to coincide with the first few days I was comfortable flying again.

Scheduling a flight that would allow for adequate rest at night, didn’t infringe on my nap, but still gave me enough time in Memphis was next on the list. I considered making the trip in two days – flying out at 6am, shooting all morning, napping, shooting that evening, and then flying out first thing the following morning – but as you can imagine, that wouldn’t have turned out so well. Too much travel and too little rest makes for a very overtired, overworked lupite, and I definitely wouldn’t have been a very good interview. (Even writing about that proposed schedule makes me yawn!) So it’s three days in Memphis for me, and my hosts for the weekend have been overly accommodating, and didn’t flinch when I suggested the flight schedule.

Lastly, I wanted to make sure the actual day of filming wasn’t going to be too jam-packed with events. I can’t sacrifice a nap any day of the week, but when I’m on work travel, it’s essential that I get my rest. Again, my hosts were more than willing to ensure that there was a break during the day, and I feel good about the schedule of events.

I know that living with lupus can be a logistical nightmare. I know the disease can be demanding, and that the accommodations you have to make can be challenging. Do I wish that my body wasn’t quite so needy? You bet. But since I know that it is, better to acknowledge that fact, and work in concert with my limitations, rather than ignore and get sick over them. I’m thankful that my 12+ years with lupus has taught me not to shy away from an opportunity like this one. Being invited to Memphis to support fellow lupus patients in a quest to raise awareness and funds is an honor. Years ago, I might have talked myself out of this trip – too many logistics, potentially too taxing, and definitely too embarrassing to admit my limitations or ask for accommodations. But more than a decade of the disease has taught me that a little honesty, some forethought, and a bit of planning can pave the way for living well, despite lupus. Not much is off limits these days, as long as I plan in such a way that my health isn’t sacrificed. So far, so good!

Monday, February 4, 2013

Lupus joint pain: determining the culprits

About two weeks ago, I woke up to a little joint pain. The following evening, I went to bed with a little joint pain. When I woke up with joint pain the following morning, I knew it was time to take action. Per doctor's orders, I upped my prednisone, and of course, those magic little pills worked wonders, although the joint pain resurfaced morning after morning. But eventually, after almost two weeks of increased dosage, I managed to resume my normal 5 mg every other day, with no joint pain in sight. But it wasn't without a little work on my part, in addition to the medicine.

Because joint pain is so rare for me these days, I can usually pinpoint what might have caused the increased disease activity. If I take a quick inventory of my habits for the previous week or two, I usually see a few areas of my routine that I've let slip a little. Some slip-ups are within my control, others are not - but it always helps me to make a quick list of "culprits", so I can see how best to get back on track.

I make this list not to overwhelm or to nit pick. Rather, I do it so that I can a) feel like I'm doing something to  help my lupus predicament, b) determine what, if anything, I can change about how I've been conducting my daily routine, and c) take stock of the cumulative effect of my actions.

Here's my laundry list of culprits during the week or two in question:

*Went to bed after 11:30 or 12am three nights in a row. (Duh...)

*Pushed back the start of my nap until 3 or 3:30 pm several days over the course of the week.

*Stressed myself about a deadline I had with our architect. (I know - I need to re-read my own post!)

*Took on a couple of extra projects for my Pillbags, all of which I just jammed into my already-spoken- for time during the week.

*Got up with the girls in the middle of the night several nights due to their illnesses. (Croup and night terrors - ugh!)

*Reduced my afternoon babysitter from 5 days to 3 days, due to her softball practice. (I knew this was coming...and I KNOW I can manage...I just have to be more responsible about my naps and sleep at night.)

* Fought off a cold and sore throat the girls have been passing back and forth.

*Skipped exercising for about a week (handicapping me both physically and mentally - I need my 15 minutes three times a week!)

Looking at this list, I realize that although my symptom flare-up was annoying, it might have been avoidable. And avoidable is something I can work on. This list illustrates that lupus doesn't render me incapable of doing things, in general. I'm not incapacitated by individually staying up late, shorting my nap, or skipping my exercise...it's just too tall of an order to do them all at the same time.

 I can't tackle all of this in the same couple of weeks, much less consecutive days! I have to choose, and choose wisely: Maybe I have to put off the Pillbag projects, if the renovation is in need of my attention. If I'm shorting myself on nap time, I have to make sure I make it up at night. It's not about sacrifice to me - it's about striking a balance so that I stay healthy, stable and strong. It's about being well enough so I have the choice of which projects to take on...rather than running myself into the ground so I lose that choice altogether.

Here's a quote from my book that touches on this very thing:


"Remind yourself that, while your disease limitations force you to make decisions, with decision-making comes the advent of choice." ---Despite Lupus: How to Live Well with a Chronic Illness, page 73






Friday, February 1, 2013

If you don't ask, you won't know - applying the 3-Question rule to every doctor's appointment

A few weeks ago, I blogged about being first-time renovators, and the questions I try not to ask my architect. But having just experienced our latest round of decision-making, which involved finalizing everything from vent hood and window hardware to colors of shingles and lighting fixtures, I realize the trouble with being first time renovators isn't actually the questions I do ask, it's the questions I don't ask!

Take this most recent task of choosing every lighting fixture in the house. Twenty-plus lights had to be finalized this week, and while I've been looking at fixtures for months, Johnny and I had yet to make our final picks. Last week, when our architect sent a list of the lights left on our list, we decided to sit down one night and just knock them out. But as we hunkered down in front of our computers to search for and pick our final fixtures, I realized we didn't really have a clue what we were looking for. We were missing some very pertinent information. Take all of the exterior lights - how big should they be? What color and finish? What type of bulb? How will they be mounted? And the balcony lights...where will they hang? How much space do we need to allow? How big can they be? How far can they stick out?  The interior lights prompted the same type of questions: How far down should the pendants hang? How much clearance do we need for the door? How big can the fixture be? The questions for all fixtures just went on and on.

So - before spending even one more second searching for what lights we could only assume were correct - I placed a call to my architect. I started out asking 3 questions per light (size, finish, and mounting specification), and he ended up talking for about 10 minutes on each fixture. It was unbelievable! He had so much information waiting to offer up - I just hadn't tapped into it yet. 

Now, I know some of you might be saying, "Well, why didn't your architect offer up the information to begin with?" And to that I say, "How was he to know what information I needed if I didn't ask for it?"

And this, I believe, is the crux of the situation - as it applies to any professional with whom you're dealing who has more information than you do: How are they to know what we know, and what we don't know, if we don't ask?

I can promise you, my forthcoming, communicative architect wants nothing more than to arm me with the correct information, so that Johnny and I can make informed, productive decisions. If we waste time trying to figure it out on our own, we waste his time. He's constantly arming us with information. He just didn't know which information I needed because I didn't ask. 

I believe our doctors relate to us in a similar way. They want us to be informed. They want us to understand. But if we don't ask, there's no way for our doctor to know that a) we're not informed or b) we don't understand.

While there are a zillion questions that I think we often forget to ask at the doctor's office (although in my "Listen Up, Doc" webinar and in Chapter 4 of my book, I try to cover many of them!), here are three key questions that are great to include at every appointment, ensuring that we're informed, enlightened, and engaged:

Question #1) "What are my options?"

Whether it's in regard to an alternative medication, another treatment, or an alternate time-frame, I found that asking my doctor the question above shows that I want to be informed. I want to understand the choices available to me, and I want to make sure I'm not missing any thing that's out there. Perhaps discussing them aloud will make the decision-making process that much easier, too. And, in the case that there aren't any other options out there, better to know that up front, rather than speculate on what the options could be.

Question #2) "What do you think?" (or "What would you do?")

Bottom line - doctors are people, too, and there's value in asking their personal opinion. It might allow you to connect with your doctor on a slightly more personal level for once, and it will most likely put the decision you're making in a whole new light, for both you and your doctor. It will be enlightening to hear what someone else might do in your same situation. So often, it seems like we're facing these weighty decisions all alone, without any experience or opinion to consider.

Of course, couching the question with, "Now, don't be offended if I don't take your advice..." might be nice, but you can be the judge... 


Question #3) "What's the plan?"

This might be the most important question of them all. You need to be engaged with your treatment of lupus,  and the only way to do so is to understand where you're headed and how you're going to get there. Asking this question at the end of every appointment, if the doctor doesn't volunteer it, is essential. You need to know what's expected between now and the next appointment, and you need to know what's going to happen if those expectations aren't met. Asking this question, and follow up questions, should get you there.