Friday, October 30, 2009

Skinny pens – my new pet peeve

I have a renewed appreciation for Good Grip products. I’ve always known how handy they can be when my arthritic hands are throbbing and in pain, but now I’m thinking I should stick to the friendly-handled gadgets for good. I recently grabbed a smooth, super skinny, slippery pen out of my desk drawer and was shocked to find that my hands ached when I tried to write with it. It was practically useless! I’m not in a flare, and I haven’t had any symptom activity for months…but that pen was just too skinny. It took me right back to the days when wincing in pain while doing the simplest of hand motions was a regular occurrence. I don’t need any reminder of that, so you can imagine where that slip of a pen is now. Hasta la vista, senor stylo!

Looking for some good products to help you get some leverage, avoid slippage, or ease your grip? Check some of these handy tools from Boston Warehouse (a recommendation from a reader) or OXO.

Wednesday, October 28, 2009

Educate yourself - help your doctor help you.

Here's a snippet from a great article my friend sent me from CNN Health. Click here to read the entire piece. It's a good one!
****

"Women's health problems doctors still miss"
By Harriet Brown, Health.com
October 26, 2009

Experts say more women than we know walk out of doctors' offices feeling that their symptoms haven't been taken seriously. They are told that their complaints are all in their heads or that everything will be fine if they would just stop worrying.

The truth: Women who know something's wrong but can't get the help they need often have an autoimmune disorder, which occurs when the immune system attacks itself. One in five Americans has one, and three-quarters of them (about 22 million) are women. Some women live with unbearable symptoms for 10 or 15 years before finally getting the right diagnosis and treatment.

"More than 40 percent of women eventually diagnosed with a serious autoimmune disease have basically been told by a doctor that they're just too concerned with their health or they're a hypochondriac," says Virginia Ladd, founder and executive director of the American Autoimmune Related Diseases Association.

What's the best way to avoid Price's fate [case study mentioned in article] and get help fast? Ladd and other health experts say you must educate and empower yourself by learning the names, risk factors, symptoms, and treatments for the seven most commonly misdiagnosed women's illnesses described here. Then push your physician to take you seriously.

***
The article goes on to describe seven illnesses in detail - Polycystic ovary syndrome, lupus, chronic fatigue syndrome, fibromyalgia, multiple sclerosis, rheumatoid arthritis, and irritable bowel syndrome. All great information!

Monday, October 26, 2009

Mirror, Mirror, on the wall

Just a few weeks ago, I had the chance to connect with a blog reader over the phone. She was a 4-year veteran of lupus, a successful entrepreneur, and doing her best to stay positive and upbeat about life with lupus.

Our conversation took place on an evening when she wasn’t feeling so well…her throat was terribly sore, and over the course of a few hours, she’d developed sores in her mouth and throat that were very painful. She was very concerned that the symptoms were progressing, and every time she went to the mirror to check their status, it seemed as if the sores were spreading and her throat was redder and rawer than the time before.

Oh, how I remember the constant (read: obsessive) visits to the bathroom to check the progress of my angioedema-ridden lips, a rash on my chest, or my swollen throat glands. It’s an awful feeling to know that your body is changing before your very eyes…and you can’t help but stay glued to a mirror so that you can track the transformation. I always thought it was helping my cause to visually monitor the progression…but you know what? My lips were going to swell whether I physically watched them double in size or not. It was out of my control, and the more I worried about it, the faster they’d swell (at least…that’s my opinion. I think my anxiety complicated the situation.) In fact, I found that the less I worried about them, the better. Once I realized that my lips were on their way to Botoxland, I’d make a pact with myself that I could only consult a mirror a certain number of times, like once an hour, or maybe two more times before bed. I did my best to take my mind off the swelling and that included visual confirmation. There was absolutely no benefit camping out in front of the mirror. It was bad karma, and it made me feel even worse about what was transpiring.

So, I shared my experience with my reader, and I hope she benefited from learning the error of my ways.

While I haven’t had any symptom worthy of a stream of mirror checks in awhile (knock on wood!), I did have some random pain on one side of my jaw recently. I woke up from a nap and noticed an odd ache in my mouth. It hurt so much so that I couldn’t chew anything or open my mouth more than a couple of inches. It only lasted a few hours (an evening and into the next morning), but I couldn’t help but obsess over the pain. I kept forcing my mouth opening, trying to see if the level of pain had changed. I tried massaging my jaw and flexing my face muscles, attempting to figure out exactly where the pain was coming from. I tried everything to monitor the progress of the pain – was it getting worse? Was it getting better? Was it spreading to the other side?

I realized after about an hour that it was time for a pact – no more jaw investigation. Just let it heal. If I was going to dole out suggestions to others on this very subject, I needed to follow my own advice. I needed to walk the walk and talk the talk. (Or actually, in this case, not talk the talk…because it hurt to do so.)

Once I took a step back and stopped obsessing, my evening pretty much returned to normal. And the next morning, the pain was gone. I’m still not sure what it was, but I’m glad I didn’t spend one more moment worrying about it. I could have worked myself up into quite a tizzy…but I didn’t. Score one for me!

Friday, October 23, 2009

The end of an era – and a good one, at that.

Today’s post was supposed to be about what I really do when my babysitter, Leticia, arrives every afternoon. I’ve mentioned a sampling of activities in previous posts: nap (first and foremost), check email, do blog posts, but I feel like I’m shortchanging myself. My previous lists seemed to insinuate afternoon’s filled with bonbons and bubble baths. But that's not quite the case. Here’s a short list of the things people like me (other lupites, stay-at-home caretakers, or people who are juggling part-time endeavors) sometimes want/need to accomplish during those precious four hours of time. Some specific, others not so much:

Nap – 90 -120 minutes
Check email, do blog posts, return book/blog/promotion inquiries and requests – Varies
Laundry, dishes, pickup the house, vacuum, grocery shop, etc. - Varies
Put together handout materials for my husband’s company – 30 minutes
Drop off/pick up/ship said handout materials – 40 minutes/40 minutes/30 minutes
Attend a doctor’s appointment – 2 hours (commute time included)
Fulfill orders of Despite Lupus – 15-45 minutes

And if I haven’t showered or worked out, add two more things to the list.

You can see how quickly 4 hours can go by, especially if there’s a doctor’s appointment in the mix. Now, I know how lucky I am to have a babysitter – thousands of people do exactly what I do WITHOUT a babysitter…but those reading along can imagine how challenging it is for a lupite to juggle any of the above, plus make time to be mindful of his/her own health. It’s a tall order…and yet, I’m about to embark upon that tall order.

That’s right – my precious Leticia has left me! She and her family have moved to Iowa, to pursue better job opportunities, reduced rents, and a lower cost-of-living. The Gorman household is very, very sad to lose our beloved babysitter - she was a part of the family, and there were plenty of tears during her final days.

Thankfully, though, my tears didn’t surface out of frustration, worry, resentment, or anger. While I’m going to miss her terribly, I’m not panicked about what I’m going to do now that she’s gone…because I know I can do this. I’m healthy enough, strong enough, and cognizant of my limitations to know that I can take care of little Miss Deirdre and keep lupus at bay. I’m going to have to be diligent about my nap (because before, I had a big margin of error (about four hours big), but I had most of the month of August to practice. Plus, I’ve become a lot better at asking for help when I’m, well, in need of help. Johnny’s home during the day, and while it’s important for him to work a full day – I know that if I get into a pickle (Deirdre skips her nap or something unexpected comes up that forces me to miss my rest), he can pitch in. So can my sister, my girlfriends, or my neighbors. I have a built-in support system…I just have to make sure I use it.

Of course – we’re still on the lookout for a new babysitter. Maybe only 2 or 3 hours instead of four, or perhaps four days instead of five – but there’s no reason to push the envelope. The system we had worked – there’s no reason to mess with living well! Know of any good babysitters in the Northern Virginia area? Don't hesitate to let me know!

Tuesday, October 20, 2009

Decisions, decisions: A question of immunosuppresants

I’m currently reading “How We Decide”, by Jonah Lehrer, author of “Proust was a Neuroscientist.” It’s the book of the month for my book club, and although I was doubtful that I’d enjoy reading it, so far, I’m hooked. I’ve learned a lot about neurons and football in the first few chapters, and have actually enjoyed doing so. I’ll leave a final thumbs up or down until I finish it, but in the meantime, the book has me thinking about a few things, one of which is how we decide which course of drug therapy we’re willing to try.

Don’t get me wrong – of course, our doctors play a HUGE role in helping to determine what drugs will help, which will hurt, and when and how best to administer the drug cocktail of choice. But, as my doctor put it years ago when I was trying to decide whether or not to start Cellcept, “The patient has to decide.” End of story. Therefore, as patients, it’s in our best interest to be informed, educated, and up-to-date on the treatment offerings in the lupus world, so that we can make solid, informed decisions that we can feel good about. It’s a burden, I agree, but there’s no way that educating ourselves can hurt.

Years ago, when I hemmed and hawed, researched and examined whether or not to start Cellcept, I had a lot of stuff to consider: possible side-effects, restrictions on pregnancy, cost of drug (because even WITH insurance, the drug cost more than my other prescriptions), etc. I didn’t know anyone else in my immediate lupus circle on the drug, and I wasn’t sure I wanted to be the guinea pig. In the end, I decided to go with the drug, based upon three things, as described in the excerpt of my book below:

***
A few days prior to my next appointment with Dr. R, [when I was to decide whether or not to start the drug], my mom called. She had met Brenda, a woman in my hometown who had lupus. Brenda was just a few years older than me, was diagnosed with lupus about the same time, and had started a new course of drug therapy about a year earlier. She’d come across this new “miracle” drug that was controlling her disease activity unlike the other medications she (and I) had exhausted. That drug was CellCept®. Brenda had experienced dramatic improvements thus far, and was hopeful that the drug would enable her to become healthy enough to fulfill her goal of having children in the future. As I pictured this woman I didn’t even know, experiencing an inkling of hope in her fight against lupus, I knew this was the nudge I needed to start the medication.

I had been blaming my hesitation to start the drug on the increased risk of cancer. But my real reluctance was rooted in my refusal to put aside the desire I had to become pregnant. It wasn’t the drug I was avoiding; it was the change to my lifestyle. I was choosing to ignore the solution that my doctor was presenting in order to protect my own agenda. When I looked at the situation objectively, I realized how little of a conundrum I actually faced. The case for CellCept® had been made: my doctor was recommending it, I’d heard a very convincing success story, and the drugs I was currently taking weren’t keeping me healthy enough to get pregnant in the first place. What was I waiting for?

***
Of course, you know how my story goes…I was on Cellcept about 2 months when I noticed a huge improvement in symptoms. I continued to experience symptom relief, becoming healthy, stable and strong over the course of a few years. My success with Cellcept enabled me to switch to Plaquenil (which is safe for pregnancy), so that I could try and get pregnant. Since my sweet babydoll Deirdre just celebrated her first birthday, I consider starting Cellcept one of the best decisions I’ve made since being diagnosed with lupus.

In fact, at my most recent book signing, a woman I’d never met before pulled me aside, and said, unsolicited, “You know what the best decision I’ve made since being diagnosed with lupus is? Starting Cytoxin. Thank God for Cytoxin.” Three cheers for drugs that work!

That said, starting strong immunosuppressant drugs is not for everyone. A gentlemen recently contacted me about the availability of new clinical trials, because his wife has lupus, and together they’ve decided not to go to the next tier of immunosuppresant drugs (like Methotrexate, CellCept, or later, Cytoxin), as he says, “for obvious reasons.”

People struggle with the immunosuppressant drug decision all the time, as well they should. It’s hard to know out what our bodies need and what they’ll respond to, how much our pocketbooks can handle (since, unfortunately, without insurance, these drugs can be prohibitively expensive), and what substances our bodies should be expected to handle. Difficult decisions, I agree, but here’s an interesting counterpoint: We wonder how many drugs our bodies can handle, but do we consider how much pain, suffering, and organ damage from the disease our bodies can take before enough is enough?

Bottom line, you have to do what’s right for you – taking into consideration your short-term and long-term health, your doctor’s recommendations, and the research that’s available. While I may be a posterchild for Cellcept (or so says my doc.), I know others haven’t found as much success with the drug. I’m just thankful I took the chance to find out how I’d do!

Monday, October 19, 2009

Are you being fair?

Years ago, when I was still working full-time, an employee gave me feedback on my performance as a manager. The one thing that stuck with me is that she appreciated the fact that I was a fair supervisor - I didn't favor employees, I treated all employees with respect, regardless of their position, and I was consistent in the way I managed. I can't tell you how happy that made me! It's one thing to be told that you're a nice manager or an easy manager...but if you've every managed people before, you know that some things you have to do aren't so nice and aren’t so easy...so being called fair was a compliment in my book!

Shortly after that review, I started thinking about whether or not I really was being fair - not only to myself, but to my co-workers as well - given the fact that I was so sick with lupus. Was it really fair to be fatigued and foggy-headed while trying to run a department? Was it fair that I struggled to attend meetings and/or client sessions because it was so hard to walk from one end of my building to another? Was it fair that, because I was working too hard, too long, and had too much stress, I had frequent doctors' appointments, hospital visits, and sick days, keeping me out of the office? Of course not!

In fact, it was very unfair for me to continue, day after day, to put myself in a situation that was taking a toll on my health, in addition to causing my co-workers added work, frustration, and concern. Once I went part-time, and my body started responding favorably to the fewer hours and lower stress levels, my health improved, and I don't think anyone was happier than my old co-workers!

That said, it’s hard to step back from a situation and evaluate your effectiveness at home and at work. Here's an excerpt from my book, touching on this very subject:

***
Reevaluating your productivity:

Begin by thinking about how you define “You.” How do you view yourself with and without lupus? What personality traits are most apparent? Have those changed since your diagnosis? When I asked myself these questions, I saw myself as follows: outgoing, a perfectionist, a good manager and well-organized. So were these attributes still applicable in my current state of illness? First, I had to admit that I wasn’t quite as gregarious as I used to be. Yes, I was amicable, but I just didn’t have the energy to be extroverted anymore. I thought of the last few dinner parties I’d attended. At each one, I sat quietly in a corner without really participating, desperately trying to make it through the evening without succumbing to fatigue, pain, or both.

Second, my desire for perfection was still present, but my standards weren’t what they once were. They couldn’t be, as my body was no longer capable of enduring the pressure.

And with my most recent health problems and reduced work schedule, was I flourishing in my career? I was still working, but my performance wasn’t stellar or consistent. Was I living up to the expectations I had (or my company had) of a hands-on, successful manager or employee?

I needed to acknowledge that a) I wasn’t operating at full capacity at home or at work, b) I was more effective when I was healthy, and c) I wasn’t performing any task better or faster than someone else could. Acknowledging the truth in each of these statements was difficult, but I grappled with the third one the most. Wasn’t I the only one who could do my job as I did? Wouldn’t the household fall apart if I stopped taking charge? As much as I wanted to believe the answers to these questions were true, I couldn’t deny the reality of the situation. Although I was making significant contributions, I wasn’t indispensable.

A friend of mine in the leadership training arena opens each of his training sessions
with the following statement:

"Please turn off all cell phones and pagers. If you happen to subscribe to the myth of indispensability, then at least switch your phone to the vibrate position."


While this statement made me chuckle the first time I heard it, it reminded me that if I took a break from my busy lifestyle, life would still go on. In fact, I could make more of an impact if I took time off to get healthy. I could reduce the tasks I was struggling to accomplish and instead focus on just a few that I knew I could do well, despite my disease. I had never been content at being second best, so wouldn’t life be more enjoyable if I was actually succeeding at it?

***Quote courtesy of Mac Bogert, from his training materials for "Leadership Skills for Non-Supervisors."

Friday, October 16, 2009

A supportive spouse speaks out

Check out the great spouse tips featured in a recent Guideposts article, from a husband whose wife had cancer. Tailored ever so slightly, they apply to any spouse, friend or family member trying to help a loved one through a difficult illness. Johnny's going to add his two cents soon - I think he could write a book on the subject!

1) Give of your time: Whenever possible, accompany your loved one to a doctor's appointment (and treatments). Be their emotional mainstay.

2) Get ready for mood swings: Recovering from cancer (or dealing with a chronic illness) takes a staggering emotional toll. Your loved one can be hopeful one day, despondent the next. Be a steady, encouraging presence.

3) Do your homework: Learn as much as you can about your loved one's condition and be prepared to ask informed questions of doctors. It takes teamwork to stay on top of medical details.

4) Help them be healthy: Chemotherapy or drugs taken to help control a chronic illness have side effects, including loss of bone density. Learn how nutrition, exercise, and physical therapy can help, and join your loved one in those activities whenever possible.

5) Look forward, not back: Cancer, or any chronic illness, will change your loved one and, if applicable, your marriage. Life can be harder - but deeper, too. Learn to grow with the changes. There are rewards and blessings that will astonish you.

Tips adapted from In Harmony, by Amy Holland McDonald (tips from her husband, Michael)

Wednesday, October 14, 2009

Turning back the clock!

Growing up in central Indiana, I never had the pleasure of adjusting my clock during daylight savings, since Indiana was one of those crazy states that never changed time during the year. That has since changed (almost all of IN is now on Eastern time), but I still struggle a bit to remember that a) DST even exists, and b) which way the clocks go in the fall and spring. I know, I know - "Fall back, Spring forward"...but you have to admit, "Fall forward, Spring back" doesn't sound all that shabby either.

A friend of mine is going through a rough adjustment period with her newly-diagnosed chronic illness - and I know, the months after a diagnosis are never fun. Learning what you can and can't do, testing your limits, and figuring out how and if life will ever return to normal are frightening, frustrating issues. Life DOES get better, and eventually it DOES return to some state of normalcy, even if it's a new kind of normal, but in the beginning, it's hard to see how that will ever be.

The "testing your limits" thing is a real tricky one, but the whole Daylight savings phrase makes me think of how the whole thing works. See if you can follow:

While our minds tell us to do whatever it takes to get back to normal (be it pushing through the pain, ignoring our symptoms, or engaging in too much activity that stresses out our bodies), our bodies are the ones that suffer for it. If you try to Spring forward, you'll just end up Falling back.

However, if you're willing to Fall back, that is, take it easy, listen to what your body needs (or doesn't need), and pass up on an activity or two in order to catch up on rest, you're more likely to Spring forward in the healing process. Food for thought, huh?

Personal Victory while we're on the subject of clocks:

Over the past two weeks, I've had a hard time getting everything done on my to-do list that I've wanted to. I've thought to myself - ugh! If I could just turn the clock back about 2 hours, I could get everything in. Of course, that's not realistic, and I just have to deal with the fact that I can only do what I can do...but here's the silver lining.

Years ago - when I'd overbook myself, the first thing to go was my nap. I'd put it off and put it off, running around like crazy trying to cross everything off my list...simply to find myself at the late hour of 6:00 pm, exhausted, bleary-eyed, and way too overtired. At that late hour - if I did take a nap - I'd typically throw off our evening plans, miss dinner altogether, or mess up my bedtime. Usually, I'd just have to retire for bed super-early, missing out on an entire evening because I'd pushed too hard during the day.

But guess where I've been the last three or four times when I've wanted to turn back the clock a couple of hours? In bed, just waking up from a mid-afternoon nap (around 2pm or 3), thinking about the things I'd like to tackle before the end of the day. I haven't cut out my nap once! I've been sticking to the "Nap first" theory and it's worked! Sure, I've had to forgo crossing off a zillion things on my list, but being rested, healthy, and flare-free is better than running any errand I can think of, particularly if it threatens my well-being.

So here's to progress - may I continue to see my nap as a necessary to-do, and never one that can be sacrificed. Let's hope Deirdre agrees with me!

Monday, October 12, 2009

Pics of the Princess

Deirdre had two birthday parties over the past few days - one on her actual birthday and another for family who came in town for the weekend. She's officially a year old...and she has the pictures to prove it. Mom's recovering from the fabulous festivities, but will return to blogging on Wednesday. Enjoy!











Friday, October 9, 2009

Question of the Day

Someone recently asked me if I still struggle with fatigue due to lupus. My immediate response? "No." Then I thought about it, and realized I should actually answer, "Yes", given the fact I take an hour and a half nap each and every day.

But you know what? I don't think of myself as having a fatigue problem, because from the moment I get up in the morning until the moment I take a nap, I have tons of energy. I wake up fully rested, I don't need caffeine to get going, and I'm chipper and productive all throughout the morning through mid-afternoon, right up until the time I take a nap.
And, then, yes, I take an hour and a half nap. But then following my nap, I'm raring to go again - energized, happy, and ready to tackle the evening. So am I tired all the time? No. Do I walk around in a zombie-like state, struggling to form sentences and finding it difficult to put one foot in front of another? No. That's real lupus fatigue. And I've been there. And it was awful. I used to experience that kind of paralyzing, incoherent kind of fatigue on a daily basis, but not since incorporating a nap into my daily routine. I hardly ever let myself get bleary-eyed and exhausted anymore. I'm not collapsing into bed at nap time because I'm completely wiped out. I just know my body (and mind) well enough to know that if I lie down, close my eyes, and sleep for an hour or so, I'll fend off any and all signs of lupus fatigue.

So do I have lupus fatigue...or am I living well? You be the judge!

So pretty much unrelated to the above, although the reason I thought of it is because, yet again, I was posed with a question. This time, someone asked me if I had a sweet tooth. A sweet tooth? I have a mouth full of sweet teeth! Seriously - there's nothing I love more than a good dessert. And I recently found one!

Who out there has tried Chili's new Sweet Shots, particularly the Double Chocolate Fudge Brownie? If you haven't, you should. It's phenomenal! It's the perfect amount of sweet to top off any meal. In fact, Johnny and I split a shot between the two of us, and there was still plenty to go around. Which, goes to show you, the world doesn't need king-kong size servings of anything, least of all dessert. A few bites of this decadent dish and you (and that sweet tooth of yours) will be satisfied.


I'll warn you, though - even though it's a small serving, given the calorie and fat content, it should probably still be considered an indulgence. If you must, check out the nutritional info here. Given that I'm not passing off the Sweet Shot as a low fat, low calorie dessert option (angel food cake, it ain't), I do appreciate the smallness of the serving and the cute presentation. Next time, though - I'm trying the Warm Cinnamon Bun Sweet Shot. Yummy!!!

Wednesday, October 7, 2009

Happy Birthday, Deerdeepants!


Can you believe that tomorrow, October the 8th, Deirdre Colina Gorman will be one year old? That's right, just 12 months ago...little Miss SweetPea came into this world. Boy - it seems like just yesterday! She's working hard to take her first steps by herself...although she'll gladly walk with the help of an able-bodied adult or pug dog - whichever happens to be in close reach. I'm confident she's just days away from stepping out on her own. I think she's logged about 15 -20 steps on her own as it is...I'll be sure to keep you posted!

Now that I've been a mom for an entire year...I've had some time to assess the situation. At a recent workshop where I was presenting, I was asked what changes I've had to make since becoming a parent with lupus. Here's a preliminary list of the adjustments I've made. And to those lupite parents reading along, feel free to chime in!

1) Nap when the baby is napping: Okay, so this is one of the oldest bits of advice out there, one that I'm sure you've heard before. I've even blogged about it before. But no one told me about the twists involved. 1) It's not the napping that's hard; it's passing up on all of the other stuff that you'd RATHER be doing instead of catching up on sleep and 2) napping when the baby naps is fine...but being on someone else's schedule is not so fine. I've had to learn how to go with the flow all over again. Good thing I had a handy book (titled Despite Lupus: How to Live Well with a Chronic Illness - chapter 3, section titled "Control") to reference that covers this very subject.

2) Prioritize your to-do list, and then cut it in half...and maybe even throw it away: While I've been cutting my to-do lists in half for years due to lupus...I wasn't prepared to toss them out the window completely! Pre-Deirdre, I had to rework a day's schedule of events dozens of times, sometimes due to an unplanned evening event that I needed to rest up for it, or because I needed a little extra sleep one day over another, or because lupus was rearing its ugly head and I needed to take extra precautions to make sure it didn't get out of control. But I made those adjustments because my schedule or my well-being was at stake. But with a baby - it's not about you...it's about her. And it's not that you can't get anything done with a baby...you can, from time to time. But given the fact that you might not be able to get anything done, you have to be okay with that. And, as we all know, you can't make up for it during her nap...because, going back to #1...you have to nap when she's napping.

3) Put sleeping first (i.e. assume she'll wake up in 15 minutes): This one is tricky, too...but I've gotten pretty good at going to sleep very shortly after Deirdre goes down for her nap - just on the off-chance that she doesn't take a nap at all. Again - it's not my preference to sleep first...but I can't tell you how good it feels to wake up to her cute little noises fully rested, rather than be scrambling to fall asleep, and then worry about finding another 30 minutes or an hour to rest somewhere else during the day. Every time I nap first...it gives me more motivation to nap first the next time. For more on this one, feel free to check out another of my previous posts.

4) Do what you must to stay well, no exceptions: There's nothing more important than staying well - if not for yourself, then for that little teeny munchkin who's counting on you. I've talked to so many people lately who are so proud of themselves for staying healthy. And you know what? We SHOULD be proud. It takes a lot of work, effort, and discipline. And we're choosing to live well. We really are. I know lupus is unpredictable, and mysterious, and evasive...you don't have to remind me...I wrote a book about it! But there are choices you can make that can help you stay one step ahead of the disease. Those choices aren't always easy, and they aren't always convenient...but for this little lady - what wouldn't I do?

Monday, October 5, 2009

Night, night, sleep, sleep!


How many of us with lupus could benefit from this little exercise? Come to think of it, who wouldn't benefit from taking stock of their sleeping habits?
***
This is one of Tylenol PM's latest ad campaigns...and I think it's pretty clever. Here's the ad copy that goes along with the visual image:
***
"Does sleep have an impact on how you feel during the day? Take our 7-day sleep challenge to find out. Chances are, you'll see that getting enough sleep can help you manage stress, improve your concentration and memory, and may even help lift your mood."
***
I absolutely agree! And when you add a chronic illness like lupus or rheumatoid arthritis to the mix, you better believe that the correlation between disposition, pain level, and the amount of rest we get becomes ever more apparent.
***
The idea of using happy faces in this exercise reminds me of one of the tracking systems I mention in my book - loosely adapted from something my mom gave me. I like to call it, "Body Outline."
***
BODY OUTLINE: Draw the outline of a body, with arms, legs, hands and toes depicted. Each day, take a pen and mark down the spots where you experience instances of swelling, pain, or symptom occurrence. You can probably get away with one drawing per week – using a different color pen or pencil for each day. You’ll be creating a very literal picture of how you feel over the course of the week, providing a useful tool to share [with your doctor or others who are helping you manage life with lupus.]
***
What a handy way to keep track of all of those aches and pains, don't you think? When you hurt every day, all day, it's hard to keep it all straight. By creating an actual picture of the way your disease is affecting you, you'll not only realize once and for all that it's not all in your head (that you have, indeed, been fighting painful and swollen joints not one, not two, but six days in a row), but you'll have created a visual aid that your doctor can't ignore.
***
Only down side is that you may confirm that an artist, you are not. :(

Friday, October 2, 2009

9 hours of sleep equals...

a rested lupite!


Last week, I blogged about my napping dilemma - the fact that my body seems to be stuck on two naps a day, rather than one nap. The problem arose when I had to change my nap schedule to match Deirdre's in August since my babysitter was on vacation. Since she's been back, I've been stuck on these two-a-day's (getting sleepy around 12pm and then again around 4:30 or 5pm.) I was giving into it - first of all because it's good to nap when you need to, but also because exhaustion seems to be one of my lupus triggers - and I saw no reason to tempt fate.

However, I think I've recently figured out the secret to singular daily napping! The best way to ensure that I don't get sleepy around noon is...drum roll please...to get plenty of sleep during the night.

Alright - so half of you are saying, "duh!", while the other half may be skeptical that I'm pushing my limits when I really need an early nap. (Take a guess at which half my mom is in!)

But I'm telling you - until I started getting 9 to 9 1/2 hours of sleep at night, 12 noon would roll around and I'd be yawning and rubbing my eyes. I had to take at least an hour rest...but then that hour (or even 2) didn't seem to be enough to hold me over until bedtime. I'd get that sleepy, glassy-eyed look in the late afternoon - and I just couldn't shake it. BUT - with 9 1/2 hours under my belt, 12pm comes and goes without a twinge of fatigue. I can make it until about 2:30 or 3pm...and then I'm ready for a good hour and a half (to two hour) nap. What a relief! So happy not to have to hit the sack three times each day. That's a lot of pillow fluffing!

For me, this post brings up an interesting distinction - the difference between fatigue as a trigger of lupus and fatigue as a symptom of the disease. Here's the way I look at it:

Fatigue (and I think exhaustion can be substituted here) as a trigger means that when you push yourself beyond your limits, tire yourself out, skimp on rest, and ignore signs that your body is tired - your body can't take it and a lupus flare begins to take shape. For me, Pre-flare Phase I means my joints begin to ache, one or two may swell, and my throat gets scratchy, hoarse, and a little sore (and I get tired - which is my symptomatic fatigue kicking in.) During Phase II of this precursor stage, I sometimes run a fever, my glands swell, and I definitely have trouble focusing - both foggy head and vision issues set in - and my symptomatic fatigue gets worse. However, even at the sign of a single digit swelling (phase I), I can usually hop in bed, take it super (and I mean SUPER) easy for a good day or two, take my medication as my doctor has prescribed during my pre-flare phase, and I can stop lupus in its tracks. (Knock on wood!)

Now, fatigue as a symptom means, to me, that you're faced with overwhelming fatigue wherein it's in your best interest to give into it (like my need to nap.) This is important, because if you don't, this overwhelming fatigue can turn into paralyzing fatigue, making it difficult to function on many levels - walking, talking, eating, breathing - rendering you an exhausted mess. The fatigue is debilitating - and as a symptom, it's awful. I mean awful. It's very difficult to describe lupus fatigue to someone who hasn't experienced it, but those lupites out there reading along know just what I'm talking about. It's the worst - and it can prevent you from doing, going or saying anything. It's that bad.

I consider myself lucky, because my symptomatic fatigue is slow to develop...so if I can catch it in Phase I, and do what I'm supposed to (like sleep double the amount I normally do during the day plus a whole host of other things), I can escape the debilitating, paralyzing fatigue experience.

Which leads me to the question - which symptom of lupus is your least favorite? I know, I know, it's hard to choose - but take a look at the poll on the right and try to pick one. Come on - it will do you good to hone in on your worst advesary!