The 2-hour explanation

So a few of you have asked, after reading Wednesday's post about my afternoon nap moving from an hour and a half to two hours, why? Why do I need more sleep? Why is the standard 1.5 hours suddenly not enough? Why did things change?

The short answer is I don't know. Nothing with lupus is set in stone. Sometimes your body just changes, and you can't pinpoint exactly what's going on. In fact, this is one of the biggest complaints lupus patients have about the disease - its unpredictability. I second the motion - not knowing what's coming stinks. But, in my opinion, and in my case of lupus, things actually might be more predictable than they first appear. What do I mean?

Take the example of my nap. I can't be sure why I need more sleep, but here's my hunch:

The need began after a busy, bustling, holiday season, during which I threw a big party at our house, traveled out of state, hosted overnight guests at our place, and shopped, wrapped, and assembled a ton of gifts for people I love. It was a fabulous month. But it was a packed month, too.

After that, I traveled abroad for a week and a half, came back for a week, and promptly left for a week at my parents to attend a family visitation, funeral, and another gathering a few days later. All of these were outside of my hometown, so again, I was on the road almost everyday that week. I wouldn't have wanted to be anywhere else during a time like that, but there was a lot of activity to fit in.

Emotionally speaking, in December, I had to put my best little doggie friend Henry to sleep. And in January, I had to say goodbye to my wonderful Uncle Bob (who finally lost his year-long battle with cancer at the young age of 65, hence the family funeral mentioned above), so to call the last two months emotionally challenging would be a big understatement.

I know stressful, emotionally taxing situations demand a lot of our bodies, and with lupus, I don't know that we have a whole lot of extra reserve to expend. Travel can be a drainer, too. Regardless of how much sleep you get or how much you watch your exertion levels, you're still taxing your body more than usual.

Now the great thing is that today, I feel super. I haven't had any swelling or joint pain, fevers or rashes, hair loss or chest pain during the time referenced above. So I consider the last few months a success. Life came at me, and I responded. And I'm still here, healthy, happy, and capable of blogging about it. Much to my dismay, I can't stop life and death from happening, but I feel that, provided I take care of myself, eat well, exercise, get my requisite rest, (and when the need arises, even more), I can prevent lupus from running rampant.

The most important factor for me is to be in the right frame of mind to make good, healthy, mindful decisions. To be cognizant of my body's demands, acknowledge that I'm not invincible, and be willing to tweak my lifestyle when and if the time comes. I'm ready to go. Are you?

Two hours, it is

Well, folks - there's no denying it. My nap has officially crept back to 2 hours.

If you recall, 6 1/2 years ago, around the time of a week long hospital stay, when my doctor declared the cause for my admittance "a pretty close call," I imposed a daily 2-hour nap. My company worked with me to revise my work day so that I could work up until 3pm everyday, giving me time to still be alert enough to drive home and hop into bed before that terrible lupus fatigue hit hard. Of course, I usually stretched my work day until after 4 (because you know how I am; if you don't, chapter 3 will explain everything), but come about 5pm, if I wasn't in bed sawing logs, I was a mess. I just couldn't fight the fatigue anymore. My body desperately needed to sleep mid-day, and the more I fought the fatigue, the sicker I became. If I didn't rest, I would be totally wiped out for the remainder of the day.

You know, I used the phrase, "I just couldn't fight the fatigue anymore", but that's not entirely true. I very well COULD have fought it. I could have pushed through every single day to work a full 9 hours (maintaining my full-time pay and my big-timer status at work - that would have been very nice.) I could have attempted to act as though this thing called lupus wasn't affecting me. I could have stood my ground and refused to admit that my body was a little bit weaker than it used to be. I could have avoided a nap at all costs, because 20-somethings don't take naps. But I can tell you how that story would have ended. Not well. I was sick. And as much as I wanted to ignore/deny/alter that fact, that wasn't an option. The crazy thing, is that once I started taking this much-resented nap everyday, I wasn't as sick as I had been. In fact, once my body started realizing that it didn't have to push so hard everyday, that I was going to give it a break every afternoon, it started responding positively. I can't say that my nap single-handedly brought me out of illness, but I do know that the fact that I continue to take an afternoon nap every day is what keeps me living well, despite lupus.

Sure, there are times when I hate cutting my activities short, or passing up on errands, or foregoing an outing that's going to prevent me from napping (anything that starts at 2pm is bad news for me.) And my husband and I have discussed the fact that, because I plan on napping every afternoon for the foreseeable future, there are lifestyle issues that we're always going to have to contend with (babysitters, his work schedule, my inability to work full-time). But we voluntarily make those decisions because taking a nap gives me a whole day to work with again. It allows me to care for my daughter, and lets me eat dinner with my family. It allows me to make evening plans, and it allows me to wake up in the morning, knowing that any twinge of fatigue will have its chance in 4-6 hours to be squelched. My nap keeps me well, and it keeps me healthy. It gives me my life back, and I can't think of any reason that could ever trump that.

All that said, about 4 years ago (give or take a year), my nap went from 2 hours to an hour and a half. It just happened over time...I became healthier and stronger, and my body didn't need as much refueling time as it did before. And I was thrilled! Imagine getting an entire 30 minutes back during days when you consistently ran out of time (because napping every day didn't make me a bump on a log. It was quite the opposite. Because I had all of this extra energy and wasn't fighting fatigue all day long, I became more productive.) It was awesome, and I was proud of the fact that I had built up my health enough to need less rest. It was quite a milestone.

Of course, during my pregnancy I needed a little more rest, and when Deirdre was up at night, all bets were off as to exactly how long I would nap. But despite those particularly instances, I was pretty darn consistent (and happy) with an hour and a half. Until now. Since Christmas, I've been taking longer and longer afternoon naps, and 4 (if not 5) days out 7, my nap has been closer to (if not longer than) 2 hours. Of course, I could fight it. I could convince myself that I only need an hour and a half, that that 30 minutes is my time, not lupus' time. But my body is telling me that I need more rest. And if it does, well, it does. Here's how this should go (and I say "should" because it's going to take a little discipline): everyday, I'll allow 2 hours for a nap. If I sleep the entire time, so be it. If I wake up after an hour and 45 minutes...sweet! I'll make sure I'm rested, and if so, I'll hop out of bed and enjoy an extra 15 minutes of my day. But refusing to give in to the signals my body is sending me would be silly. In fact, it would be stupid.

I want to be able to take care of Deirdre, and keep play dates, and appointments, and evenings out. I want to keep feeling good and have months between doctor's appointments. I want to keep traveling to talk about my book. I want to expand our family one day. I'm not going to be able to do any of those things if I'm sick. And if a 2-hour nap prevents that from happening, then sign me up.

Little known facts are meant to be shared

While I was very lucky to have been diagnosed with lupus within a few weeks of the initial onset of symptoms (swollen glands, fever, chest pain, achy joints), I know the odds are not in favor of a quick and early detection of a disease like lupus. It often takes people months, if not years, to finally reach a diagnosis, and that's not because they haven't tried. For various reasons, lupus is a tricky one to diagnose. The more common lupus symptoms, when considered individually, can indicate a range of illnesses, many of which are of little consequence, and, thus, are often dismissed by patients and/or doctors alike. It takes a concerted effort by both parties to connect the dots and determine if lupus is, in fact, the culprit. Lists, background information, and other little known facts about a patient's medical history are paramount to helping doctors piece together the puzzle of a chronic illness.
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Because my symptoms came on so strong and fierce 9 years ago, my doctors had very little difficulty figuring out what I had. I had a very proactive pulmonologist and a spot-on rheumatologist, both of whom were determined not to let me leave their offices until I had a reason for my pain and suffering. It was a patient's dream to have such attentive doctors...but in thinking back, I realize that I did my part to contribute to the discovery of my disease, primarily because I was able to offer the following information from my past that, up until that point, I thought was irrelevant:

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1) I had experienced an episode of gout about two years before. It was very random (and very painful), and I was treated by a podiatrist because it my foot that had swollen up to three times its size. By no means is gout an indicator of lupus, but it was valuable information for my doctors to consider when exploring past instances with pain, swelling, and other arthritic like symptoms.

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2) I had been complaining about joint pain in my knuckles during a recent hobby I'd taken up - pottery. Don't get me wrong, I wasn't going anywhere fast throwing pots on the wheel...but I did enjoy it. Johnny and my sister (and my grandmother, up until her death) still display my works of, ahem, art, and I'm proud of my little creations. But, by the end of my second 6-week session, I was experiencing a throbbing pain in my middle finger when I pulled up on the clay to form a pot. It really hurt, but because the pain would go away immediately when I stopped doing the motion described above, I didn't give much thought to it. I joking told Johnny that maybe I had some form of arthritis, but we both laughed that notion right out the door. We assumed my fingers were just unaccustomed to the repetitive-type motion I'd introduced.

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3) If you remember, I was diagnosed just 6 weeks after my wedding. And for about 6 weeks BEFORE my wedding, I experienced an annoying ache in my knees and hips. Being a victim of fashion, I had taken to wearing tight, high-heeled boots during that time, and had attributed the pain to the contortions my feet and legs had to make to wear those knee high monsters. Looking back, I'm sure that pain was a precursor to lupus, but when I wore those boots into a doctor's appointment one day, my rheumatologist took one look at my outfit and declared, "That pain in your knees? It's from the boots." Hmmm. I think he was just jealous of my fashion statement.

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4) During that 6 week period before my wedding, I could not, for the life of me, get out of bed before about 9am. I was never an early riser, but I was just dog tired every morning, and didn't know why. Again, I mistakenly attributed it to my wedding planning, the stress and late nights tying up loose ends. Although my work day officially started at 9am, my supervisor was extremely accommodating, allowing me flexibility to come in an hour later when needed. I told him I was sure once the wedding mayhem was over, I'd be more rested.

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All of these little tidbits, when taken individually, had pretty logical explanations. But when brought to my doctor's attention, and thought to be indicators of one primary issue, the picture started to become very clear. My doctors knew what I had...but the info I provided made them sure they were on the right track, and made diagnosis, and more importantly, treatment come that much faster.

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So get out those lists, take in those binders, and print out those chronic control spreadsheets. If you have a couple of little known facts to share - share them. Your doctor can't guess what's been going since he saw you last, so be sure to fill him in!

I can see clearly now...thanks to Henry

As you know, we lost our little pug Henry a week before Christmas. While we still think of that guy on a daily basis, I've come to realize yet another thing he taught me about life with lupus. I know, I know - I've blogged about Henry's little lessons before - but this time, I'm reminded of one if not the primary reason why I took the steps to write my book, and why I continue to keep this blog. My motivation? Because I want others to know what I didn't know when I was struggling with my disease.

I can think of dozens of things that I wish I knew when I was first diagnosed, dozens of things I wish I understood when it came to balancing work and my disease, dozens of things I wish I had uncovered about myself and the way I approached the disease. These and dozens of other epiphanies are exactly what I've attempted to notate in my book. It's the issues I address on this blog that I wish someone had told me years ago. And as I've said many times before, much of the information I impart did come from other people - the members of my support group, my family and friends, and my co-workers were all instrumental in helping me figure out the best way to live well, despite lupus. But I wanted it all in one neat, little package - with, I suppose, a front and back cover.

I've thought about this fact before - but since losing little Henry, I've been able to reflect on the things I wish I'd known about raising Mr. Hendo, too: that weight gain, lethargy, drinking more water, and slowing down can be signs of old age...but they can also indicate something else like diabetes; that his reluctance to take walks, jump up on the ottoman, get off the bed in the dark, or do steps could just be him being stubborn...or they could indicate something else like loss of vision. Of course, now that we know all that we do about diabetes, blindness, etc. Darwin's got it made. His brother Hen was just paving the way, taking one for the team, and bringing light to the world, one paw at a time.

If I can help even one person with lupus find their way more clearly, I can join Henry is knowing that my mission has been accomplished.

Daily dose (of medication)

In keeping with the drug theme of the week, let me announce that January 2010 makes it official - I've now been diagnosed with systemic lupus for 9 years. And with that diagnosis has come 9 years of daily medication. There hasn't been one day since January of 2001 that I haven't taken medication for my disease. Today, I'm on the fewest number of prescriptions since my diagnosis (just two, plus a baby aspirin and calcium), so the idea of taking as few as 3-4 pills in the morning and another 4 at night makes me pretty darn happy. Because I've taken as many as 17 pills at a time, all prescribed and per doctor's orders, of course, I consider myself a pro when it comes to pill popping. But, I know, even if a doctor tells you that you need them, and even when they're working, the idea of ingesting all of those pills can still be, pardon the pun, tough to swallow. But in all of my days of pill popping, I've learned a few things. Here are just a few pointers for those of you suffering from medication mayhem:

1) Don't self-medicate (i.e. take medications NOT as prescribed). I know it's tempting, but it's in your best interest to follow doctor's orders, particularly where your medications are concerned. There's a reason your doctor is prescribing the pills in the manner in which he or she has, and it's going to make solving your lupus enigma a whole lot easier if you're doing what the doctor has intended. If you self-medicate, you're taking away the control that your doctor has put into place in order to determine how active your disease is, how your body is responding to the treatment thus far, and whether or not the treatment should continue. It also helps to determine what courses of treatment should be explored in the future - if medicine A doesn't work, medicine B might become an option. But if medicine A hasn't been taken as directed, the results you (and your body) are producing aren't accurate, thus muddying the waters as to what drug therapy might do the trick. Self-medicating can only complicate the process of treating and/or controlling your disease - why would you ever want to do that?

2) Get clarification. Assuming that you're putting your complete trust and confidence in your doctor to prescribe your medications appropriately (e.g. choosing NOT to self-medicate), you have every right to make sure you fully understand your doctor's intentions regarding each and every medication he/she prescribes. You should have a complete understanding of what's being prescribed, why, and how it's suppose to work. I'm not saying you have to pore over those little scientific flyers that come along with every medication, but you do need to make sure that all of your unanswered or lingering questions are addressed. Don't know exactly why a drug is being added to your regimen? Ask. Feel like a drug isn't working? Say so. Tend to think the crummy side-effects of a drug outweigh its benefits? Mention it. It's imperative that you work closely with your doctor to determine what the best course of treatment is for you. Not all meds work for everyone - and you're really the only one that can help your doctor determine how to proceed.

In fact, you may find that collaborating closely with your doctor opens up options that might not have ever come up. I can think of several instances where my doctor, as a result of my probing and pertinent questions, changed my prescription line-up in order to better address the issues at hand. And each change was for the better.

3) Don't be unduly influenced. I know you're on a lot of medications - probably more than your whole family combined. And maybe your family's not so keen on you taking all of those medications. But, here's the deal - as long as you're not self-medicating, and as long as you and your doctor are working together to ensure that the medications you are taking are necessary and effective, then you don't have anything to worry about. Now, that said - as most of you have read in blog posts past, my family was instrumental in helping me clear up many of my issues with lupus, including some of my medication mysteries. They were concerned about some prescriptions, disagreed about me taking others, but never, and I mean, never countered my decision once my doctor and I had decided on a course of action. I say, if you can explain to your family (or whomever is questioning your cocktail of drugs) why you're taking what you're taking, what each drug is supposed to do, whether or not it's effective, and what the plan is going forward (taking it in the short term, long term, until it reaches a certain level of efficacy), then you're in the clear. You can always consider what your family has to say, weigh their opinions carefully, and if you think they may be on to something, pose their concerns to your doctor or perhaps a pharmacist and see what the professionals have to say.

4) Do what you can, aside from the drugs. As I mentioned in the beginning, there hasn't been a day since 2001 that I haven't been treated with medication for my disease. And, as far as I can tell, that's the way it will be for the foreseeable future. And I'm alright with that. I figure I'm doing everything I can aside from the drugs to live well with lupus (eating healthy, exercising, getting my rest, watching my stress, making sure I understand my doctor's intentions in regard to the drugs I am on), so if I need the prescriptions I do to make my body go, so be it. But I'll tell you one thing - the minute I have to go up on my prednisone because I'm blogging too much, or add a cholesterol medication because I'm not watching what I eat, or introduce an anti-inflammatory because I'm skipping out on my rest - that's the moment I'm going to re-evaluate my drug therapy. Personally, I like my 4 little pills in the morning. And I intend to keep it that way.

Tally up the meds!

Having spent a total of 3 weeks on the road with Deirdre over the past couple of months, I realize that casually leaving my pill bag out on the nightstand (or the minibar unlocked!) in our hotel room with a one-year old running around isn't going to cut it! No worries, folks - Deirdre didn't even come close to getting her sweet little mitts on my prescription medications...but she sure did love the sound of those rattling pills!

I was able to find a safe, out-of-the way place for my pill bag - a place where she couldn't get them, but I wouldn't forget them. It can be a bit of a challenge - because you need a spot where you won't forget to take your pills each day, a place where you can get to them easily, and a spot where you won't forget to take them when you leave the hotel for good.

Juggling prescription meds can be quite an ordeal, and with lupus, it's almost a guarantee that you have at least a couple of drugs to contend with. When you get a second, check out the poll at the right, and cast your vote. Let's see just how many pill takers there are out there!

(And feel free to leave a comment listing the prescription/OTC drugs you take. I bet there are a few that we've ALL been prescribed!)

New children's book - to benefit lupus!

Check out this new children's book when you have the chance - called " Mama, Won't you Play with Me?", by Meg Walsh, a 10 year veteran of Lupus. It was voted the "Book of the Month" by Mamapalooza - and a portion of the proceeds from her book sales goes to the LFA. How wonderful!

While I haven't had a chance to read the book in its entirety, it looks like a great read - telling the story of Dudley Duckling whose Mama has a broken wing and cannot play with him. (Sound familiar, lupus moms?) It is a story, “written from the heart”, says Walsh and a story in which the characters learn the invaluable lessons of love and family.

As it says on her website, Walsh wrote "Mama, Won’t You Play With Me?" after the difficult time that her family faced as she battled Systemic Lupus. Walsh says her children immediately connected with the main character Dudley and “it is my hope that it will bring comfort to the child in a similar situation.”

Walsh encourages readers to visit her website, to share their own stories and to nominate a charity to receive her donation.

Book also available on Amazon.com. Enjoy!