Friday, February 5, 2010
The 2-hour explanation
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?
Wednesday, February 3, 2010
Two hours, it is
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.
Monday, February 1, 2010
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.
***
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:
***
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.
***
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.
***
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.
***
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.
***
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.
***
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!
Friday, January 29, 2010
I can see clearly now...thanks to Henry

Wednesday, January 27, 2010
Daily dose (of medication)
Monday, January 25, 2010
Tally up the meds!
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!)
Monday, January 18, 2010
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!


