Friday, March 26, 2010

Recording LIVE!

Interested in "Despite Lupus"? Tune in now to talk radio to learn more about the book and the author. Interview going on live this morning at 10:10 to 11am. Log onto www.holyspiritradio.org, click "Listen Live" and you're good to go.

Have questions or comments? Feel free to call in at 215-345-1570. I can't wait to hear from you!

Wednesday, March 24, 2010

Tune in and read up!

Two quick mentions of Despite Lupus appearances, one already in print and the other upcoming and on the air. Read on for details!

Despite Lupus is proud to have been one of three newly published books to be featured in the latest issue of Lupus Now, the Lupus Foundation of America's quarterly magazine, full of great information and articles about, you guessed it, lupus. Not only did DL get it's own little blurb front and center, it's the proud recipient of the coveted LFA Education Committee seal of approval - guess the folks at LFA think my little book has something to offer.

Thanks to everyone at the LFA for taking the time to include DL in your list of recommended literature - we're proud to be on your pages!

And in an upcoming appearance, be sure to tune in on Friday, March 26th at 10am as Despite Lupus hits the airways for a radio interview on Holy Spirit Radio. Looking forward to talking with Mark Houck - host of the 10am show - and delving into my book a little bit more. Here's all the information you should need. Feel free to call in and ask those burning questions you've been dying to ask me...looking forward to hearing from you!

WHEN IS THE SHOW?: The show airs live at 10 AM this Friday 3/26.

HOW CAN I TUNE IN?: You can listen online at www.holyspiritradio.org. Just click the "Listen Live" Button and you can tune in.

HOW CAN I ASK MY QUESTIONS?: Simply call into 215-345-1570 and you'll be able to ask away.

HOW LONG WILL DESPITE LUPUS BE ON?: From about 10:10am through 11am. Plenty of time to cover all of the particulars, right?

HOW CAN I CATCH THE SHOW AT A LATER DATE?: The show will re-air on Sunday, 3/28 at 2 PM. Tune into www.holyspiritradio.org to listen.

Can't wait to hear from you!

Monday, March 22, 2010

The 5 second rule

I was traveling two weekends ago (sans Deirdre and Johnny), and the morning I left was a little hectic. I'd pack the night before and had gotten plenty of sleep, but trying to get out the door by 10am, showered, dressed and ready for a weekend away was tricky. Deirdre was a doll, giving me plenty of latitude to get prepped and ready - but our morning routine certainly wasn't as relaxing as it usually is. In fact, I was running a little behind, so I decided to bring "breakfast" upstairs for both of us while I got ready. It was a actually a mid-morning snack (in the form of a sugary, frosty donut) that I knew would do the trick for the few minutes I needed to buy myself. There she was sitting on the bathroom floor, eating her donut on the paper towel I'd provided, looking adorable. I normally wouldn't encourage her to eat in the bathroom, much less a donut - but I was desperate. Desperate enough, in fact, that when part of her donut dropped on the actual bathroom floor (which, I'm sorry to say, was not spic and span)...I just watched her pick it up, look at it sideways, and then pop it in her mouth. I know the 5 second rule was in full effect - but normally I cringe at the thought of her doing that. This time, I was pleased as punch. In fact, I even said something like, "That's right, honey - it's just fine." Desperate times call for desperate measures.

Later that morning, at the airport, I was enjoying a cup of decaf while I waited to board my plane. I took off the lid to let the coffee cool a bit, and the top fell on the ground. It fell top down, so the part where I was to drink was definitely "hit"...but I just picked it up, gave it a quick brush off, and proceeded to sip away. I guess I was on a 5-second roll.

These two instances may not seem like a big deal to you, but I've NEVER been a believer in the 5 second rule. I'm a bit of a clean freak - although I've gotten better (having gotten worse first) since Deirdre. Yes - I'm the mom that would wipe down the table, high chair and anything else at a restaurant that Deirdre might possibly come into contact with (although this no longer happens - at least not with the same intensity.) And yes, I'm the person who throws away anything edible if it drops on the floor, no matter how short of a time it's there. But the tide seems to be changing. And I think I like it.

I realize that being flexible, and laid back, and, perhaps the best word would be "tolerant", is a great thing. Why can't we be a little more tolerant with ourselves - and apply the 5-second rule to our lives with lupus?

So what if the need for perfection (at work, at home, in social circles) has to give a little?
Let it. Just this once.

So what if our desire to accomplish EVERYTHING on our to do list (that's way too long anyway) has to be dampened?
Just do it. Even if it's painful (at first.)

So what if our drive to be all and do all simply can't happen, given our limitations with lupus?
Be okay with it. For real.

I can't tell you how good it felt to just let go of my clean freakishness for once - and to give myself a break. Keeping my cool, not freaking out, and letting a little imperfection into my life was refreshing. Wanna try it?

Friday, March 19, 2010

2 steps forward, 1 discouraging step back

I know, I know - it's a cliche that you've heard a million times. But unfortunately, it's oh-so-appropriate when it comes to living with a chronic illness.

I refer to the constant battle in my book - the mental gymnastics of "yes, I'm okay with this; actually, no, I'm not" and the physical struggle of "yes, I can do "x"; oh no, I guess I can't." This constant state of flux can be disheartening, and alarming at times, but from what I understand, it's a natural occurrence when it comes to the slow and deliberate act of healing.

I imagine part of the roller coaster effect may have something to with our own expectations (you get so far ahead and expect that momentum to continue...and when it doesn't, it's a big fat bummer), or perhaps it's just a natural response we have toward improvement (you're feeling better, and better, so you do a little bit more, then a little bit more, and then wham! You're set back three days.) It could also be a product of time (Shouldn't the medicine have kicked in by now? My flare couldn't possible last this long, could it?) Whatever benchmarks we're using to gauge our progress, we just have to keep in mind that lupus doesn't use the same metric we do.

Lupus doesn't seem to care about time, or momentum, or expectations. Of course, we wish it did, but whatever gauge the disease is using, we don't have the ability to control it. When life takes a course of its own, like it does so very often, we just have to sit back, and do our best to hold on. Of course, it helps to keep your chronic control chart, and it's important to make good, healthy choices along the way, but there are going to be set backs. And when those set backs occur, it's an opportunity for spiritual progress and mental growth to take place.

We're not in control of everything, including our disease - now how are we going to deal with it?

Are you going to kick and scream, letting everyone know just how blown away you are to find out you can't control every last moment of your life, or will you relax, take a deep breath, and continue on with grace? I've had the opportunity to try both approaches, and you can imagine which one yields the best results.

Wednesday, March 17, 2010

Giving in isn't giving up

I had the pleasure of stumbling upon a few online discussions regarding my book recently - which is just about as thrilling as it gets for a first-time author. (You mean people are actually talking about my book? On their own? Oh my!!!) One thread of comments really hit home. It was in regard to the fine distinction between fighting (the disease, your body, the limitations) and giving in (giving in to the disease, slowing down, accepting that you can't do it all). Many people (me included, until I wised up), assumed that giving into the disease (slowing down, saying "no" every once in awhile, reassessing one's responsibilities at home and at work) was the same as giving up - that if you stopped fighting, you were letting the disease win. (I believe the discussion was in regard to my decision to go part-time at work years ago...that by doing so I was giving up the fight, rather than sticking it out and not letting the disease get the best of me.)

And this is a fair assessment - I, too, thought the same thing...for way too long. Giving up my career and letting go of my identity at work were two things I desperately tried to avoid. I held onto them as if my life depended on it. What I came to realize, however, is that what my life REALLY depended on was the ability to put aside my ego, my pride, and my stubbornness, look outside the (career) box that I had lived in for so long (and liked!), and say, if I make this one concession, look at the life I'm going to get back. Making this one accommodation wasn't going to ruin my life - it was going to save it.

In my opinion, giving in was the only way for the disease and me to co-exist. If I'd kept fighting, I wouldn't have been around to tell you about it. And I believe that's the decision many of us come to - we realize we're not invincible and that we can't do it all. We just have to figure out how to let ourselves off the hook for once. We have to learn how to stop, take a moment to listen to our bodies, and respond accordingly. We have to work with the disease, rather than against it.

One women echoed these sentiments, putting it better than I could. She said, in reference to someone else's argument that not everyone can quit their job as I did, "You're right. Not all of us can work part time or stop working altogether. I think, though, that there is a difference between giving up the fight and giving in completely. I am to the point where I am finally accepting that I have this disease and that sometimes, I have to defer to it. If that means lightening my work load or skipping out on some of my social obligations, so be it. (Ms. Gorman's) description of how she learned to stop fighting and listen to her body is exactly what I'm going through right now. It's hard to realize you're not invincible and you can't just work through the pain and fatigue...I have tried for years to keep up with work and school and social activities, telling myself I was fighting lupus by living the life I wanted to live, regardless of the disease. But I'm to the point now where I know I can't fight it anymore. I am exhausted and unhappy all of the time because I just can't keep up. I can still do all of those things, but I have to slow down if I want to take care of myself. "

I haven't talked about my decision to stop working in awhile - but I just thought I'd highlight a few points that are sometimes lost in translation when I talk about leaving my career behind. Yes, I quit my job, and yes, I was privileged and lucky and fortunate. But sauntering into my supervisor's office to tell him that I couldn't keep working full-time because my body couldn't hack it was one of the hardest things I will ever have to do. On so many levels, I felt like a failure. But there was one reason that I persisted - that allowed me to walk in and resign from the management position I so dearly loved. Because at that point, my life wasn't worth living, and I knew I had the power to change that fact. I knew that if I let go, I'd get back the life I deserved. I could once and for all stop fighting life, and start living it.

So why was the decision to stop working so difficult? I know, I know. On the surface, it would seem like every person's dream to be able to just walk away from a job (or work part-time, which is what I did) in order to focus on health and wellness. But it's never that easy. Here are just three of the reasons I was considering at the time:

1) I was the sole bread winner at the time I went part-time. Yup - that's right. Johnny had gone out on his own and started a business a few months beforehand, and was still ramping up. Sure, he had the potential (in the years to come) to make his fair share of our household income...but at the time, he was making exactly zero. Ziltch. Zippy. So to say that I had the luxury of reducing my salary because I could rely on my husband isn't exactly true. What is true, is that my health deteriorated so badly that I knew it was now or never - either I make a switch and we deal with less income, or I watch my body spin out of control for ever. It was so hard to give up that money. But you know what? It was only money. And we realized there are a ton of ways to save money....when you really have to.

2) Thinking it is entirely different than doing it. I'm telling you - saying you're going to/would like to/wish you could step down from full time work is easy. It's kind of like wishful thinking. But realizing the moment has come for you to actually make it happen is an entirely different story. In theory, we all may say we don't want to work. But actually going into your supervisor's office, saying you're not strong enough or healthy enough to keep doing what everyone else can, is about as tough as it gets. It takes courage, and strength, and resilience. You have to be a fighter to do that...so don't talk to me about not fighting. That was the greatest fight of my life right there. When I walked out of the office after coming to the agreement with my boss to work part-time, I thought, "Alright now. I think I might just win this thing."

3) Along those same lines, your identity, whether you like it or not, is typically intertwined with what you do for a living (at least it was for me.) You work hard in school to make this happen. You work even harder AFTER school to ensure that you're valued and appreciated for your efforts; that your worth isn't overlooked or underpaid. So what happens when all of a sudden, you change gears? You suddenly have to tell yourself that your identity ISN'T what you do, and you have to convince yourself that you're worth something even if you choose less pay, or less responsibility, or less prestige. Everything you had built up in your head as worthwhile and worth fighting for becomes obsolete. Telling yourself that you can still contribute and that your self-worth isn't decreasing is tricky. You have to work at it. In fact, you have to make a career out of it. But allowing yourself to become a happier, healthier individual enables you to become everything you want to and more. And for years to come.

There you have it. Just a few things to consider when you think you don't have it within yourself to make the changes you need to in order to live well with a chronic illness. I don't regret one move I've made...only the time it took me to wise up and make them!

Friday, March 12, 2010

Wash those grimy hands!

We all know how important washing our hands can be. But the folks at haiwatch.com have taken it to a whole new level.

When you get the chance, check out their latest campaign efforts to reduce the instances of and educate patients and health care professionals on the presence of HAI's, or health care-associated infections. One of their spokespeople recently contacted me in an effort to spread the news about their current "Not on my Watch" campaign.

As she says, "recognizing the rapid growth in cases of hospital-related infections like MRSA and ventilator-associated pneumonia (VAP), we put together a website called "Not on My Watch" to educate patients and health care professionals."

The goal? To eliminate these preventable illnesses and their often tragic consequences.

The good news is that not only are health facilities around the country taking HAI's seriously,
the rep from haiwatch.com says, "companies like Kimberly Clark and it's partners (http://www.haiwatch.com/Partners.aspx?Region=US) are campaigning and educating health care workers about how important hand washing after seeing each and every patient can be. Of course, health care workers know this, but people can be forgetful."

Tool kits, informational flyers and posters are being sent to hospitals all over the US. They are simple reminders for everyone who sees them to wash their hands. It's so simple yet can save so many lives. A little soap and some warm water never seemed so easy!

More information can be found at haiwatchnews.com.

Wednesday, March 10, 2010

Online support group tomorrow - Molly's fund.org!

Check out this great new resource, an online support group (in real-time!) put on by Molly’s Fund Fighting Lupus.

The next meeting is tomorrow, Thursday, March 11 at 9 PM EST/6 PM PT. You can create your free profile by clicking here, and then you'll be all set to participate. Once your profile is established, you can go onto the site and chat anytime - so feel free to start sharing!

Why did Molly's Fund Fighting Lupus start the online group? In their own words, "we know that it’s hard for a lot of people with lupus to get to support groups, whether it’s because they are in pain or don’t live near other people with lupus. This online group lets people interact in real-time, providing live support to one another without having to leave home."

Enjoy!

Tuesday, March 9, 2010

Sending up flares

Poor Deirdre. Despite her best efforts to clue me in to her, shall way say, "diaper status" a few mornings ago, her pleas went ignored as I frantically tried to finish the one last task left on my morning to-do list. I know. Shame on me. As soon as I realized the fact that she had been sending me her #2 signals for almost 15 minutes, I felt terrible. Here she was, doing her best to say, "Momma - I've got a live one!", and all I could do was tell her to just wait a second - we'd play in a minute - let Mommy finish putting away the laundry. Ugh! I wish I'd known!

Some of you may wonder why the smell of the thing didn't tip me off, but given the fact that I can't smell, that's never been a good indicator. I knew when I got pregnant that I was going to have to be a proactive diaper changer. I figured I'd just do a lot of checking, obtaining visual confirmation when necessary...but very soon, Deirdre picked up the slack and started sending me signals to let me know the deal was done. Often times, she grabs her diaper and says, "Uh-oh", but if she's running around (or I'm preoccupied), I miss the pronouncement. Other times she comes over and wants to be held...she'll be in the middle of playing, and she'll just stop, come over, and reach up her hands to come up. Again - great for me - I do a quick visual and then we do our little changing routine. In fact, she became so familiar with our diaper routine in the family room (grab the wipes and dipes from the closet, go to the same spot, put down the pad, yada, yada, yada), that if I asked her if she had a poopy, she would, of her own volition, run to the spot on the floor, lie down, roll over on her back, and put her legs up - a signal parfait for this non-smelling mama. I thought I'd died and gone to heaven the first time she did it...but then she continued doing it. It was great. She's grown out of it now - but she's still really good at telling me when it's time. It's just a matter of me picking up on the clues.

But one day last week, I failed miserably. I couldn't figure out why she was getting so whiny all of a sudden. We'd folded the laundry (a task she thoroughly enjoys, although I don't know that I'd call what SHE does "folding"), and I'd wanted to get everything put away and hung up before we went on to play. I noticed she was a little antsy while we folded, but I figured she just wanted to move on to something else. Just let me hang the shirts and then we'll play, babydoll. I warded her off with a few books and toys, which kept her attention while I hung. After a minute or two, she started in again - this time being clingy and wanting to be held. Just a few more minutes, little lady, and them I'm all yours. I'm sure at that point she'd already done her "Uh-oh" and diaper tug thing, but I'd just been too set on finishing the task at hand to notice. I'd finished the hanging, but I was getting greedy and wanted to put away all of the folded clothes, too. Come on sweet pea, just let mommy put away these last two piles of clothes. She continued to whine, and I kept staving her off with this toy and that stuffed animal, thinking that if I could just get two more minutes, I'd be finished and she'd get what she wanted - me and all of my attention. Of course, if I'd taken a minute to interpret the signals she was sending (because she's very rarely whiny or clingy), I'm sure I would have figured it out. She was sending me all of the right signs - all the ones I knew and had responded to in the past - and yet I was ignoring them, one after the other.

Of course, once I checked her diaper, and saw the big ole' mess that poor girl had been carrying around, I felt awful. I changed her, reassured her that her signals were right - Momma was wrong - and vowed never to ignore her very obvious cries for a clean heinie again.

This made me think of the signals my body sent me when I was struggling with lupus. How many times were my joints achy, or my fingers swollen, or my glands enlarged, and I just tried to ignore the fact that they were? How often did my body send me the same signs (actually flares) again and again, saying that whatever I was doing wasn't working - and that I needed to stop, rest, and maybe even get some medical attention before continuing on? And how often did I just slough off those alerts? How often was I too preoccupied with life's "to-do" list to stop and listen to my body? All too often.

That's why becoming more attuned to your body and more accustomed to the signals your body is giving is so very important to living well with a chronic illness. Chronic means continuous, constant...so I believe if we take the time to listen and learn the signals our chronic illness constantly and continually sends us, we can actually learn how to control it better. We can learn what helps, what doesn't, and when we need to call in for back up. That's why keeping a chronic control spreadsheet is so helpful - you can actually see the patterns emerging, and the evidence you need to act will be in black and white.

Of course, it's one thing to be able to pinpoint the signals, but it's another thing to interpret those signals as warning signs and take appropriate action. Don't convince yourself the symptoms will just go away on their own. Don't assume your doctor doesn't want to hear from you in between appointments, if you're flaring. And CERTAINLY don't convince yourself that whatever s/he has to say will be something you don't want to hear. Maybe you've heard it ten times before (that you need a change in medication, you need to slow down, you need to be monitored more often), but one of these days, it's going to make sense. All of the signals are going to point in the same direction, and that will be your chance to do something about your disease. To make it better. To start living well. To stop fighting - and to start living.

Friday, March 5, 2010

ALR's new video

The Alliance for Lupus Research recently came out with a new lupus video. It's pretty good - take a look and see for yourself!


Wednesday, March 3, 2010

Where was my notepad, eh?

What's the second worst offense you can make when you go to the doctor, in my opinion? Asking a question and not remembering the answer! I recently committed this, not once, but twice - once with my pulmonologist and again with my rheumatologist. Here's what happened -


Last fall, I started experiencing a sort of tingling in my left leg for about 10 minutes after I exercised...it wasn't very bothersome, and there was no pain involved, so I just dismissed it. The tingling persisted, and it started to happen at random times during the day, although it did seem to be linked to times when I had been sitting for an extended period of time. I happened to see my pulmonologist about 2 months after I noticed the tingling, so I thought I'd ask him. He assured me that it wasn't a blood clot (given the location of the sensation), and figured it was more like a pinched nerve. He also said to make sure I mentioned it to my rheumatologist, and said that maybe, if the feeling persisted, I should see someone. Now this is the part I do not remember...the kind of doctor I'm supposed to see! I can't recall whether he said my PCP, a chiropractor, or maybe even a neurologist. I can always call him, but ugh! I never do this. I think it was such a minor issue in my mind, I just wasn't focused on the answer.

The worst part, of course, is that when I went to my rheumatologist, I asked the same question, but again, spaced on part of the answer. He agreed that it could be a pinched nerve, that it wasn't indicative of a clot, and that, yes, exercise as well as prolonged sitting/crossed legs
could exacerbate it. The part I can't remember? What he said I should do to alleviate it!

Seriously - I must be losing my marbles. I'm pretty sure that in both cases, I was so concerned that either doc would think it was a blood clot, that the moment both of them dismissed the idea and they uttered the words "pinched nerve", I thought, "Whew! No clot, only a pinched nerve. Thank goodness!", and then I failed to listen to the rest of what they had to say.

That's what I get for putting away my notepad too early, huh? If I had had it out, poised and ready to go, there's no way I would have missed their comments. Oh well. I've learned for the next time. Good news is that the tingling has disappeared. Cross your fingers (or maybe not - as it could cause a pinched nerve!) that it won't return.

Oh, and since you may be wondering: what, in my opinion, is the worst offense you can commit at the doctor's office? Not asking the question at all!

Monday, March 1, 2010

Doctor's orders, straight from the doctor

Here's a snippet of an email that a friend of mine sent me years ago when he found out that I was diagnosed with lupus. He was finishing his residency at the time - just months away from becoming a full fledged ER doc. I think his words should be followed to a "T" - consider it "doctor's orders!"

He says:

"The only advice that I can give you is to find a rheumatologist who will give you all of the attention, time and energy that you need. This is difficult being that physicians are being called on to see more and more patients in less and less time. If you are not comfortable with your doc, switch, because, if you start to get sick again, a moderately intelligent caring doctor is 100 times better than a brilliant doc who doesn't care."

How true this is!

Along these same lines, when you get a chance, cast your vote in the poll at the right. Is there something that you would or should take up with your doctor, the next time you're in? Let me know!