Monday, June 27, 2011

Saturday's workshop - what a success!

It's not often that I do a recap of an event in which I participate - but Richmond on Saturday was such a treat - so enlightening, mostly because I did so little of the talking!

To kick things off, Dr. Lenore Buckley gave a phenomenal overview of the current therapies and treatments we have for lupus, including Benlysta, and how it's typically determined which lupus patient gets what treatment. She elaborated on how each of these therapies works to curtail the disease activity (stuff I've never heard before, which was refreshing), and wrapped up by talking about future options for lupus, explaining exactly how these new drugs will fit into our current therapies. From start to finish, it was a great talk. AND she left time for questions - which is always nice.

I then joined a small panel of lupus patients, each of us taking 5 minutes to tell the story of how and why we learned to talk so freely about our illnesses. Personally, I can tell you that it took a long time for me to craft my story - it didn't just happen overnight. It was very overwhelming in the beginning - trying to find the words to explain what lupus was to people who'd never heard of it before, learning to describe how the disease affected me without breaking into tears, and what the emotional and physical toll really looked like, not just the surface stuff you read in textbooks or online. Back then, I struggled to put into words what it felt like - partially because I was resentful that I had to be the one to educate, create awareness, AND shoulder the burden of the pain and suffering. But very quickly, I realized if not me, then who? Who else is better equipped to tell the real lupus story - who else but lupus patients like us can explain what it's like to be in constant pain, so much so that brushing your teeth or dialing a cell phone is often too taxing to undertake? Who else can illustrate what extreme fatigue is like - that taking a shower used to require a 30 minute nap afterward, or that you head down to breakfast, but by the time you put cereal in a bowl and pour the milk, you're too tired to eat. And who better than us to talk about the identity crisis, the shock of taking dozens of medications, and the realignment of priorities (and the appearance of limitations) so early in life?

That said, the BEST part of the event was the breakout groups. Everyone at the event got a chance to tell their lupus story - to tell their story to people who get it - to people who understand - to people who can empathize. There were head nods, and tears, not to mention a few "Amen, sisters". It was great - and I was truly honored to be part of such an event.

So how have I learned to tell my lupus story? I try to focus on three things -

1) I make it relative, so that people understand what I'm talking about relative to their own life experiences (like the shower or cereal example above). In fact, with my doctor, I learned that saying, "I was in so much pain, I couldn't get out of bed" is lost on him, but the specific example of not being able to dial my cell phone, or make the "Ok" sign with my fingers hits home. He can quantify that pain - and thus, I get a response like, "I get it - you're in an unnatural degree of pain, and you're not happy about it. Now let's do something about it". Yes, doctor. exactly.

 2) I demonstrate how it (my story) affects them (my audience) - like at the grocery store, with the gentleman bagging my groceries. I didn't look sick, I didn't act sick, so asking for help with my groceries seemed out of context. But taking 1 minute during the walk out to the car to explain why I needed help demonstrated exactly how my situation affected him, and how he played a role in my personal well-being, as well as other customers who might ask after me. 

And 3), I show friends and family how best to insert themselves into my life with lupus, so that their help, concern and attention is productive, not destructive. People want to help, but if you don't show them how to do so exactly, they'll intervene where you least want them to, and whether or not you like it. You need the help - just learn to route it to the right places.

Thursday, June 23, 2011

LFA event: This Saturday, June 25th in Richmond, VA

Got plans for Saturday morning? If you're living in the Richmond area, feel free to swing by the LFA-DMV's next lupus workshop, free of charge but chock full of valuable lupus information! And look for me on the patient panel - I'll look forward to your questions!
Details are below. To register for the event, click here:

Finding Your Voice: Telling your Lupus Story
Date: Saturday, June 25, 2011, 9:15am - 1pm
Where: Bon Secours St. Francis Medical Center- Cancer Center
14051 St. Francis Blvd.
Midlothian, VA 23114

A workshop designed for lupus patients in Central Virginia to receive current lupus information and training to feel empowered to tell their lupus story. Includes a Q&A with LFA-DC/MD/VA Chapter Staff, as well as other prominent figures knowledgeable in the field of lupus.

9:15 a.m. Registration

9:30 a.m. Lupus Update- An update on what is new in lupus, treatments, and promising research.
Presenter: Lenore Buckley, M.D.
Professor of Internal Medicine & Pediatrics
Virginia Commonwealth University,
School of Medicine

10:30 p.m. Finding your voice- How to tell your lupus story
Every case of lupus is different and every patient has a story to tell. Our panel will discuss ways to empower participants with the knowledge they need to confidently convey their journey through lupus.

Presenters: Jean Marie Leonard, a Dale Carnegie trainer from Northern Virginia; Sara Gorman, Author of Despite Lupus; Michele Shuman, lupus advocate and Richmond volunteer coordinator; Tracee Logan, lupus advocate.

12:00 noon Chapter Update- The LFA- DC/MD/VA Chapter Staff will conduct an interactive panel discussion that addresses how we can help you get the most out of our chapter services, and ways our chapter can help navigate you through your lupus diagnosis and treatment.

1:00 p.m. Adjournment/Evaluations

*Please note that the cancer center is on the same campus as Bon Secours St. Francis but is located in a different building. Our sessions will be in rooms 1&2 of the cancer center.

Monday, June 20, 2011

Fighting inflammation - tips from Health Monitor.com

I found this article in one of the most recent newsletters from HealthMonitor.com and thought I'd share. Don't know about you, but staving off inflammation is always an issue for me. It can crop up at anytime...so I'm always on the hunt for ways to help. Hope you find these tips useful!

***
Chronic inflammation may contribute to many illnesses, including arthritis, diabetes, heart disease, Alzheimer's disease and some forms of cancer. Fortunately, you can fight back.

Reviewed by Health Monitor Medical Advisory Board

1. Lose weight
According to the National Institutes of Health (NIH), if you're overweight or obese, losing 5%-10% of your weight may decrease inflammation throughout your body.

2. Fight back with food
The good news is that there are many foods that actually fight the inflammation process, including:

•Green tea
•Nuts
•Deep-sea fish, including mackerel, herring, sardines, albacore tuna and salmon
•Ginger
•Curcumin, the active ingredient in the spice turmeric
•Nigella, a spice used in Indian food, has been shown to have anti-inflammatory properties and may fight cancer
Several studies also have found that resveratrol, a substance that's abundant in red wine, grapes and peanuts, appears to be a potent anti-inflammatory.

Note from Despite Lupus - I actually suspect that the opposite is true for me. The last few times I had a glass of wine, I experienced a case of angioedema shortly thereafter. Might or might not be related...but since I noticed the pattern several years back, I haven't touched red or white wine. And no swellings since. Interesting, huh?

3. Bring down your blood sugar
While the above foods are anti-inflammatory, other foods should be avoided. Those that increase inflammation include:

•Simple starches, particularly those made with white flour, potatoes and rice
•Sugar
These foods can increase levels of blood glucose and C-reactive protein (CRP), a key inflammatory marker. High CRP indicates that inflammation is present in the same way that a fever indicates you have a virus or flu.

4. Get more shut-eye
Those who get less than seven or eight hours of sleep per night are prone to chronic inflammation. If you're having trouble getting that much sleep, doctors suggest that you:

•Establish a consistent bedtime
•Avoid caffeine for eight hours before bed
•Don't bring work into the bedroom
•See you physician if you still have problems falling asleep or staying asleep.

5. Walk it off
Exercise can be one of your best weapons against chronic inflammation. You can reduce inflammation levels by simply walking 10 minutes per day. Benefits include improved heart health and reduced obesity.

"Studies show that people who are active have healthier joints for a longer time," says Tim Church, MD, PhD, who's done many such studies. "Physical activity is anti-inflammatory."

6. Hit the drugstore
Aspirin fights chronic inflammation. It also can reduce the risk of some cancers and heart disease. But be careful—doctors recommend limiting aspirin to a child-sized dose, as it can cause stomach bleeding.

If aspirin isn't right for you, ask your doctor whether you should consider anti-inflammatory supplements, including:

•Ginseng
•Quercetin
•Ginkgo biloba

Talk to your doctor before taking any over-the-counter products,including aspirin supplements, because of possible interaction with prescription medications. Also, discuss the option of using a prescription anti-inflammatory if you have a chronic condition.

Wednesday, June 15, 2011

Havoc inside, party outside? Don't kid yourself, lupites!

With the summer solstice just around the corner, it's clear that summer has almost arrived. And with the season of sunshine comes the planting of my second-story window boxes, which always seems to become an ordeal. One window box gets full sun, the other, full shade. What's a symmetrically-inclined novice gardener like me to do?

I usually go with some sort of impatiens/vinca/begonia combination...but this year, I'm going with all impatiens. I know - my full sun box is going to hate life, but I'm determined to keep it watered and looking full and lush. Fingers (and thumbs, which aren't very green) crossed!

That said, watering those boxes is always a chore. Neither box is in a very convenient location - they're the two farthest rooms from the water source, in opposite directions, and both have a shade, a screen, and window pane that I have to get through in order to water. One of the boxes, in fact, is outside Bernadette's room, so I have to plan my watering around her sleeping schedule. (Might not sound difficult...but I can assure you, it causes me much frustration!) To top it off, my mini-watering can that I keep upstairs is too small (and awkward) for the job - so each box requires two trips to the water source, and a little trail of water is left after each trip because the can isn't very well-designed. I'm telling you - I don't know why I stick with it. It's like torture year after year after year. Nonetheless, I do it, but I'm always looking for a shortcut - anything to make watering those boxes easier than the year before.

Last summer, I decided to try a shortcut, opting to use the hose from the outside to shoot water up to the second story, where ideally it would bounce off the window and drain into the window box. I'd been eyeing up my idea for weeks, dreaming about the ease and convenience of turning on the water and letting the hose do the work. But I have to admit, something told me it was a bad idea. It was like I knew there would be consequences to my attempt to cut corners, but I just couldn't help myself.

So I tried it. From down below, my shortcut seemed ideal - the flowers were getting wet, and the window appeared to be the perfect backstop. But as I watched all of the excess water drip down the side of the house, the delicate little flowers being doused with a jet stream of water, and heard the sound of water beating against the glass window, I just knew something was amiss.

And right I was. After I finished hosing down my boxes (it just sounds wrong, doesn't it?), I went inside to get something from the kitchen, and I heard the sound of running water. Or should I say rushing, gushing water from somewhere in the house. I went around the corner, and there, in the dining room, was a steady stream of water falling from the chandelier, onto the dining room table and off onto the chairs, the floor, and the rug in the adjoining room. There was a full blown waterfall, right their in my dining room. My mouth agape, I ran upstairs to where the window box was, only to see the entire corner where the window was soaked with water. My oh-so-convenient jet stream of water had seeped through the window, down the wall, into the corner and down through the ceiling to my dining room below. I was flabbergasted that my perfect little short cut could have gone so awry. That while everything seemed fairly controlled on the outside, the water was wreaking havoc on the inside.

And so goes my comparison to lupus. In my 10 and 1/2 years with the disease, I've made dozens of attempts to cut corners - trying every which way to trick the disease into behaving, rather than putting in the hard work I know is required to get better and live well. I know there will be consequences to my scheming actions, and I know that a strategy that requires little to no effort usually yields little to no result, but I try, nonetheless. And it never, ever works. And yes, on the outside, my body may look fine, but inside, the disease is, no doubt, wreaking havoc. And that misconception - that deliberate attempt to ignore the signals our body is sending us (much like the pounding water against the window) - is where we go wrong.

I'll admit - sometimes, the signs aren't as obvious. Sometimes it's just a hunch...like the blast of water that just doesn't seem right for those sweet little flowers...but it's that hunch that can make or break our lives with lupus. Maybe this summer - we can commit to doing things the right way, albeit the long and tedious way:

Wearing sunscreen everyday, whether you want to spend the extra few minutes lathering up or not.
Getting enough rest at night, even if those late summer evenings are calling your name.
Keeping those doctor's appointments, even when your summer vacation schedule doesn't allow for it.

Or maybe it's wearing a hat, taking your meds, or eating well. Whatever it is, here's to putting in the effort to living well. It's bound to be worth it!

Monday, June 13, 2011

Are preconceived notions holding you back?

In my humble opinion (which isn't so humble, is it?), Sunday is a day of rest. It always has been. I remember growing up, the most strenuous thing we did on a Sunday was to decide which donut to get at the grocery store after church. Maybe we'd head out on our little boat for a leisurely afternoon on the lake, or run around in the sprinklers in my side yard, but usually, the only thing on the agenda was curling up with a good book or catching an episode of Murder, She Wrote on Sunday evening.

Of course, those were the days before kids played organized sports on Sunday. There was no way I would have had a softball game or cheerleading practice on a Sunday. It just wouldn't have happened.
But today, I understand it's a rare occasion when there's not a baseball game or a soccer match on Sunday. What a bum deal!

Truth is, before I even had kids, I used to tsk tsk tsk the concept of letting kids participate in sports on a Sunday. I always told myself that I'd never let that happen - I assumed I'd find a league where Sunday games weren't played, I'd have my kids skip out on that day's game, or I'd start some petition to overhaul the schedule. And this was all before I even had Deirdre! I had my mind made up, and that was that. Of course, I hadn't really thought through the somewhat unreasonable work arounds I'd come up with...I'd simply formed my opinion, and that was the end of it.

Until recently.

I was talking with an old friend from high school whose daughter now plays soccer, and she mentioned that she had an upcoming game on a Sunday. I mentioned my game-free Sunday stance, and she agreed that she wished it wasn't so. But she was able to shed a little light on the subject...a subject that frankly, I didn't know anything about. (With a 2 1/2 year old and an 8-month old, who am I to pass judgement, right?)

My friend mentioned two things I'd never really considered, primarily because I'd never thought the whole business through. I'd just formed an opinion and went on about sharing that opinion with anyone and everyone. So here's what she said:

One - playing games on Sunday makes the season shorter. Sure, she didn't like the Sunday game concept either, but she said that it shortened the season so much that she and her family were able to take vacations when they really wanted to, and more often than if they were beholden to a longer soccer season. (I knew the season would be shorter with the extra day of play, but I hadn't thought through the opposite effect of having to stick around while the games played out, Saturday after Saturday after Saturday.)

Two - my friend said that the games were more like play dates than anything else. She said the kids run around, have a great time, and the whole thing's over and done with in 40 minutes. Now, I'm sure this will change as the kids get older...but she put a whole new spin on the concept of the Sunday game...one that opened my eyes to the fact that maybe it's not all that bad. At least not bad enough to prevent the girls from playing a sport that competes on a Sunday.

So how does this relate to lupus? I found myself forming the same judgmental, ignorant opinion about reducing my work schedule years ago. There I was, working 10 hour days, plus weekends, convincing myself that the only way to feel important was to keep working like a madwoman. I knew (like all opinionated, know-it-all twenty-somethings do) that there was no way I could be fulfilled working part time - even if that's what my body (and my disease) needed me to do. I had decided, without knowing anything about my options for a reduced-work schedule or talking to anyone with lupus who'd embarked upon a change in their career due to their illness, that asking for accommodations at work (be it my daily schedule or the total hours I worked) wasn't for me. I wouldn't like working less, I told myself. I'd miss the responsibility, the hustle and bustle of the office, and I'd hate myself for giving less than 100%.

But oh, how wrong I was. I can't really tell you exactly what it was that made me realize, "Hey, working less to save yourself isn't such a bad deal", but I can tell you this: it was the best decision I've ever made regarding my health and wellness.

And note that I'm not talking about letting go of my career completely. That decision was made way down the line. I'm simply talking about that preconceived notion I had that reducing my work schedule (or asking for any accommodation at work) would make me feel worthless and unfulfilled. The biggest obstacle I had was breaking through my own misconceptions.

So the question is - do your uninformed opinions keep you from living well, too?

Wednesday, June 8, 2011

Hi ho, hi ho, my hair is starting to grow...

Finally, I can say with confidence that my hairloss due to pregnancy (or lupus, or both) has subsided. I'm no longer losing strands by the dozens, nor is my bathroom floor covered with hair after I blow dry it. And yes, the 2" spikes are in full force (although the spiky hairs on the top of my head have actually grown out and are blending in.) Now, it's the 2" sideburns that are holding me back. At this point, I'm at the stage where my hair looks better down than up...imagine that! Here, I've been putting it up for months, trying to mask the loss...and now that it's growing back in, it's better that I keep it down. Blend in, little hairs, blend in!

Of course, now that I have my hair squared away, it's on to the next blip on the lupus radar. It seems that my protein levels are quite high, indicating that my kidneys aren't performing up to snuff. My doctor noticed it a couple of months back...and ordered a 24 hour urine test. The results weren't good - showing about three times the amount of protein as normal. Talks of Cellcept, cytoxin, and a kidney biopsy were discussed, but only if the results of a repeat test showed the same.

Moderate to good news was that the repeat test showed normal protein levels for a lupus patient (which I will gladly accept)...but the volume wasn't what it should be. (Guess I wasn't throwing 'em back that day.) So on to test #3. The collection has been made, the specimen has been submitted...now, we wait.

The positives in my favor are that I'm feeling great and I'm not overdoing it - indications that point in the right direction. But...we'll just have to see what's in store. I can tell you though - my mind was racing the moment my rheumatologist mentioned the possible treatments/exams that I listed above. I mean, wow. I wasn't expecting any of that. And while I sat stunned for about 2 minutes while he talked and explained, I realized the good news is this: years ago, I would have spent way too much time and energy deliberating over those options. I would hashed and rehashed the choice of medication, the timing and necessity of the procedure, and the impact of both on my life's plan. I would have been desperate to make sure that whatever I chose didn't upset my plans for the future. Pregnancy, travel, lifestyle...it would have all come into play and weighed heavily on my decision.

But today - oh, today - it's simple. I do what I need to do to stay healthy. And if that means I rewrite my plans...those arbitrary, self-imposed benchmarks that I've learned don't mean as much as I think they do...then I rewrite them.

Don't get me wrong - Does going on cellcept mean I'd have to wait a year or more to have a 3rd baby, if I wanted to? You bet. Could it postpone that plan forever? Yup. Does extra protein in my urine upset my plans for flare-free living? Without a doubt.

But the great thing, is that I have options. And today, I'm living well enough to know when to take advantage of those options, and when to let life with lupus take its course. The more I try to steer, the harder it is to take the wheel.

Of course, all that said, the sample could always come back free and clear. I'll keep you posted!

Monday, June 6, 2011

The concept of completion. In my dreams...

I need to let something go...and that's the concept of completion.

Who am I kidding? I have two young kiddos, a chronic illness, and a daily nap to contend with every day; everything, and I mean everything, has to be done in stages.

Doing laundry, responding to emails, making dinner, getting dressed, writing blogs, making a phone call, going to the bathroom - you name it, it gets done incrementally. (I'd say that last item usually gets completed...but I do usually end up washing my hands in a sink other than the bathroom, typically because I'm on the move. Or should I say, the girls are on the move!)

But I need to realize that a) stages are okay, b) the job still gets done, and c) I should embrace the 2 minutes and 40 seconds I have to start one or any of the above tasks, realizing that it may take a total of 60 minutes to complete what should be a 15 minute project, but that getting a start on it is half that battle. 

What's my default modus operandi? Waiting until I can carve out the total 15 or 20 minutes so that I can do a project start to finish. But that's SO hard to do...and doesn't really set me up to succeed. Why not at least get the laundry started...even if I have to leave it until after my nap is finished? Or make the phone call, but let the person on the other end know that my window of time is small...and may be cut short altogether?

When I think about embarking upon a task that I might not be able to finish immediately, I break out in hives. Well - I used to break out in hives. Now, I realize that the "shoulds" in life are very few and far between...and that nothing is so pressing that it should cause me to stress out or skip a nap. And spending a few extra minutes with those girls is much more important than any item on a to-do list.

Don't you think?

Friday, June 3, 2011

Lupus in the UK - "Despite Lupus" heading across the pond

As mentioned on Wednesday, my family and I are heading over to the UK to celebrate a family wedding this summer. Wondering if any of you London lupites will be around. Would you be interested in participating in a lupus workshop of sorts?

Some fellow writers of mine (one in Bath, one in Cambridge, both of whom are in the medical/chronic illness world) are willing and eager to work together to put something on. We were thinking of taking things in a few different directions: perhaps a Pain Management seminar...or maybe a Living with Lupus workshop. Maybe even a Lupus in Literature event...my friend could read her poetry about living with illness, I could read and discuss an excerpt from my book, while others could come and read their musings on life with lupus.

What do you think? Any takers? We were leaning toward holding the event in Cambridge...but is London a better bet? Feel free to email me at sara@despitelupus.com. I'll look forward to hearing from you. (Note that I've been talking with the Lupus UK organization - but would love to hear from the people who would actually participate.)

Let me know and see you this summer!

Wednesday, June 1, 2011

The lupus nap: early and often

What a busy month! I didn't even have a chance to plug Lupus Awareness Month (which was the month of May, by the way). My travels took me away from the homestead (and my computer) for several weeks out of the month, so I wasn't able to blog as much as I'd hoped. However, I'm back now, and we don't have much significant travel planned for a month or so. Ideally, my posts will be back in action.

But don't think I haven't been thinking of you - I may have been doing the whole planes, trains and automobiles thing, but I was actually just gathering fodder for the blog. I'm all stocked up on how to travel with lupus, how to deal with the sun and lupus, and how to potty train with lupus (yes, we've officially started.) I'm full of editorials...so be sure to check back early and often.

Speaking of...I had the opportunity to put my Travel 101 tips to use recently, which includes (if not centers around) the theory of napping early and often. Try that, and these others on for size:

1) When making my travel arrangements, I opted to fly during the girls' naps, not mine. I had the choice of flying in the middle of Bernie's morning nap, flying during the end of Deirdre's nap, or flying during my nap. I decided to choose the first option, which basically meant Bernie drew the shortest straw. But she adjusted great, and fell asleep on both our outbound and return flights. Coming back was definitely better than going...I think both mom and baby figured out the whole flight/bottle/air pressure/entertainment/sleep thing at the same time. She's officially a good flyer...which makes our flight plans to London this summer look all the more enticing.

2) I banked on the fact that I would be exhausted the day after I arrived on vacation, so I asked my dad to schedule our plans accordingly. The original plan was to hop in the car and drive 2 hours to go visit family the day after we arrived, but I just knew it would have been a little too much to handle. As it turned out, I made that day after a two-napper day (see #5), so traveling anywhere to do much of anything really would have crimped my style (and left me feeling crummy.) Three cheers for good decision-making and planning! (I also ended up skipping a rendezvous with a friend that I was attempting to fit in the actual day I arrived...what had I been thinking!)

3) I scheduled our plans so that the day before I left to come home, we didn't travel anywhere or do much of anything. Once again, I knew that I needed to rest up the day before we flew, so the midday plans I'd originally made for that day with my girlfriend and her family had to fall by the wayside. It worked out well in the end (see #4), but I had to make the difficult, upfront decision to just say no.

4) I took my family and friends up on their offer to come visit. It was phenomenal!

5) Lastly, but most importantly, I napped...early and often. That is, when I felt tired (particularly the day after I flew), I didn't wait for the clock to determine when I needed a nap. I just stopped what I was doing, told Paola or my mom or dad that I needed to nap, and then did just that. I NEVER usually do that...I always wait until my pre-determined afternoon nap time, and then I just make it a really good one. But not this time. I didn't want to get behind, so I napped EARLY. On top of that, I didn't assume that the early nap should take the place of my normal nap.  In fact, I didn't just nap once, but twice that day after flying, napping both EARLY and OFTEN. I kept up the practice for the week...resting when and if I needed to. I listened to what my body was telling me, rather than what my mind wanted to do. And it worked.

Of course, I'd had a bit of a symptom scare the week before I left, which I'll tell you about in an upcoming post, so I had my reasons for taking extra good care of myself. You know how that goes...all we need is a little disease activity to keep us on the straight and narrow!