Friday, April 30, 2010
I'll be there to participate in a panel discussion (I'll be the lupus patient - a role I can fill with my eyes closed!), to facilitate a family members support group, and to sign and sell copies of my book.
Details for the big event are below - feel free to email with questions or leave a comment. I'll do my best to get back to you before I head off to set up shop early Saturday morning. Hope to see you there!
1st Annual Living Well with Lupus Symposium
Saturday, May 1, 2010 at the Indianapolis Marriott East
7202 East 21st Street, Indianapolis, IN 46219
8:30 am registration and coffee
Symposium begins at 9:15 am and will conclude at 1 pm
Cost: $5 foundation members/$10 for nonmembers
Sessions that shouldn't be missed:
· Healthy Lessons: A Healthier Better Me featuring Dr. Louisse Goggins
· Lupus 101: A session for newly diagnosed patients
· Caregiver/family member support group featuring lupus patient and author Sara Gorman
· Navigating Social Security and Planning for Disability featuring Charo Boyd
· Ask the Experts: A panel featuring specialists who treat lupus patients, caregiver of a lupus patient , a lupus patient, and a staff member from Social Security Administration
Come early to enjoy the Vendor Village that will include businesses and organizations that will provide helpful resources, information and products that will help you live your best life.
Wednesday, April 28, 2010
Monday, April 26, 2010
Be sure to check out lupus blogger Leslie's site, Getting Closer to Myself, and check out the interview she conducted. After she finished reading my book (which she posted about several weeks back), she realized she had a ton of questions, and decided to email me. I'm always open to chatting, so she posed her questions, I answered them, and thus, an interview was born! She asked great, thought-provoking questions - questions I bet some of YOU have wanted to ask, too!
Here's the link to the interview - and while you're there, check out her other posts. She has great things to say!
Friday, April 23, 2010
That's right - I'm going back for seconds on the baby front...already more than 3 months along and feeling plump as ever. We're very excited that Deirdre's going to have a baby brother or sister this fall, and she is, too!
The crazy thing is that the due date of this baby is October 20th...the EXACT same due date I had with Deirdre two years ago. If you recall, I went 12 days early with Deirdre (was going to be induced but ended up going on my own), and from what the doctors say, the plan will probably be about the same this time around. I think we'll try and avoid October 8th if we can...Deirdre might be excited about the prospect of a little bro or sis, but I don't think she'd be too thrilled about sharing her birthday with the little one.
And just in case you're wondering...the little bump does have a name. I know we could have gone with "Bun Numero Dos" or "Bun Jr.", but we're going with "Kit Kat" this time around. And Deirdre's doing her best to say it. "Ku Ku" is about as far as we've gotten. But there's still plenty of time! When you ask her where Mommy's baby is, she lifts up her shirt to reveal her tummy. Hmmm...we still have a few kinks to work out.
And as far as my high-risk lupus pregnancy goes - everything's the same as before: the plan is to be induced early, to have sonograms every two weeks from week 16 through the end to check for congestive heart block in the baby...due to the lupus SS-A antibody I have, and to monitor the baby often (I've had three sonograms thus far, just to keep tabs on things.)
Their recommendation? Skip 'em. Our decision? Skip 'em!
Here's hoping all goes as swimmingly this time as it did with Deirdre!
Wednesday, April 21, 2010
On the heels (or should I say "paws") of Monday's post, I want to explore this whole concept of Darwin's ability to just stop when his body said, "Stop!"
When we were walking the other day, and he just all of a sudden plopped down and declared that he wouldn't be walking anymore...I know he wasn't thinking of all of the "consequences" of his decision.
He wasn't worried that I would think any less of him for giving in to his body's need to stop.
He wasn't concerned that he might compromise our walk.
He didn't feel guilty about inconveniencing me, Deirdre, or our walking companions.
He wasn't concerned that he wouldn't get his exercise for the day.
He wasn't worried about the fact that we were at the furthest point from our destination.
He wasn't concerned that his need to ride would slow us down and put us "behind schedule."
He didn't give two HOOTS about the schedule in the first place.
He wasn't worried about what he looked like - a 26-pound pug riding on top of a stroller.
He wasn't concerned that giving in this one time would preclude him from ever walking again.
He wasn't upset with himself for needing to stop.
He didn't feel dejected, unfulfilled, weak, or lazy about stopping.
He didn't mind being vulnerable to the effects of the heat and sun.
He didn't try and make excuses for his need to stop. He just did it.
He didn't turn down my offer to help - he just plopped on top of the stroller and rode.
He didn't try to make up for it when we returned home. In fact, he slept better than ever.
In summation - he considered not one psychological ramification of not walking any longer. He had a physical need, and he met it. He felt better NOT walking, so he stopped.
Boy - what a smart cookie! I know, I know - dogs don't carry around all of the emotional and psychological baggage that we do. But you know what? We don't have to either. We could just turn off those channels every now and again - and just follow our body's lead.
We could say, "my fingers are swelling/aching/burning/turning red or I'm feeling a little fatigued/feverish/foggy/exhausted/rundown right now...I guess I should stop what I'm doing" instead of considering every aspect of stopping before we do so.
I know many believe that dogs aren't as developed as humans...but in this case, I think Dar's got a leg up on me. He's on to something, and I intend to follow suit. You up for following in his paw prints?
Monday, April 19, 2010
So Deirdre, Dar and I went out for a walk the other day, and
while Darwin is normally a cracker-jack walker, he must have put one paw in front of the other one too many times...because he ended up pooping out on us mid-way through our walk. I guess it was a little warm, and the hills we were doing must have been a little much for him, because after walking about 10 minutes, he just said, "That's it. I quit", and sat down in the grass along the side of the road, refusing to go one more inch. I tried to encourage him, and had even brought water for him along the way, but he wouldn't have it. He was finished walking, and that was that.
So what could I do? We were practically at the furthest point away from our destination, and Deirdre wasn't about to give up her comfy seat in the front. So - we made a single stroller into a "Double" stroller, and Dar got plopped right on top, where he was quite content for the rest of the walk. We looked pretty silly - my sister and her son giggling at us the whole time (thanks to Katie for the picture) - but Dar was sending me a very clear message as he was lying belly up in the grass, and that was that he needed to stop. The walk, the heat, the sun - had all been too much.
So I think the baton has been passed. Darwin has officially taken Henry's place in teaching me to how to acknowledge my own boundaries. Henry the pug must have been beaming in heaven - so proud of his pug brother for knowing his limitations and acting upon them. I'll look forward to the chance to put Dar's wisdom into practice (although he doesn't look particularly wise and all-knowing in this picture, does he?), and I'll be sure to listen to my body the next time I'm pushing it and respond accordingly. I'm hoping that flailing myself along the side of the road, belly up, rolling around in the cool grass will not be necessary - but I'll do what I need to to make sure I don't overdo it.
Rest assured, Darwin the pug is NOT guilty of overdoing it.
Friday, April 16, 2010
Of course, the book is still available in hard copy - on this site and on Amazon.com.
What IS Kindle, you ask? It's Amazon's Wireless Reading Device. It's about the height of a book, although thinner than most, at just 1/3 of an inch thick. It's weight? Only 10.2 ounces, which is lighter than a typical paperback.
Here are just a few of the selling points taken from the description on Amazon's Kindle listing, where you can buy this snazzy little device:
*Books in Under 60 Seconds: Get books delivered wirelessly in less than 60 seconds; no PC required
*3G Wireless: 3G wireless lets you download books right from your Kindle; no annual contracts, no monthly fees, and no hunting for Wi-Fi hotspots
*Global Coverage: Enjoy 3G wireless coverage at home or abroad in over 100 countries. See details. Check wireless coverage map.
*Paper-Like Display: Reads like real paper without glare, even in bright sunlight
*Carry Your Library: Holds up to 1,500 books
*Longer Battery Life: Now read for up to 1 week on a single charge with wireless on, a significant improvement from the previous battery life of 4 days
*Built-In PDF Reader: Your Kindle can now display PDF documents natively. Native PDF support allows you to carry and read all of your personal and professional documents on the go.
*Read-to-Me: With the experimental Text-to-Speech feature, Kindle can read newspapers, magazines, blogs, and books out loud to you, unless the book's rights holder made the feature unavailable
*Large Selection: Over 480,000 books (NOW INCLUDING DESPITE LUPUS!!!) and the largest selection of the most popular books people want to read. For non-U.S. customers, content availability and pricing will vary. Check your country.
*Out-of-Copyright, Pre-1923 Books: Over 1.8 million free, out-of-copyright, pre-1923 books are available to read on Kindle, including titles such as The Adventures of Sherlock Holmes, Pride and Prejudice, and Treasure Island. Learn more
*Low Book Prices: New York Times® Best Sellers and new releases from $9.99 (including DL.) When traveling abroad, you can download books wirelessly from the Kindle Store or your Archived Items.
*Free Book Samples: Download and read first chapters for free before you decide to buy
Let me know if you're a Kindle user. I haven't been converted yet...but I could be swayed!
Wednesday, April 14, 2010
It was uncanny - the way he reacted. Johnny was there, too - and we both agreed that Darwin's reaction might have been the sweetest thing that's happened since we lost Henry in December. Of course, Deirdre running over to the spot where Henry used to sit on the ottoman and saying, "Bubba" was pretty cute, too, but to see Mr. Dar react to that name brought us to tears. Sometimes it's so easy to accept that he's gone...but other days, not so much.
I was thinking about that big ole' guy just the other day (although I should mention that not a day goes by when Hendo doesn't get some air time), and it was in regard to feeding time.
Darwin, bless his heart, eats his breakfast in the morning, and his dinner in the evening. He eats the same amount everyday, usually around the same time, never asking for more, and never complaining about the menu of the day (which is, sorry to say, always the same old Iams formula.)
Henry, on the other hand, would hardly have finished is helping of food (which, I suppose, he considered his "first course") before he was banging on his bowl asking for more. He would whine, flip his bowl over, even bark until we gave him more food. And you know what? We tried to resist. We really did. We knew giving into his gourmandish ways was not advisable...but that whining! He really wouldn't stop until we gave him a little more. And after finishing that bowl, (his "second course"), he would start harrumphing and snuffling as if he expected a little bit more. We were usually able to stand our ground and wait out the sounds of the grumbling pug - but it took some patience. Eventually, Henry would realize that he was not entitled to a third round of food and would eventually saunter off to the family room to sleep off his frustrations. And as he went, he never failed to shoot you a look like, "Don't worry. I'll be back. I'm not finished with you yet."
Seriously. This was our routine every day. And not just the morning...but in the evening, too. He even started to request food mid-afternoon, and then again at night before bedtime. If you want to talk about this new generation and their sense of entitlement...boy, could Henry lead the charge. He was just so needy...particularly when it came to food. It only got worse when he was diagnosed with diabetes - because now we had a thirst problem to contend with...and then when he went blind, physically getting him to either his food or his water bowl was always a production. Like feeding time wasn't enough of a production already.
So the other day, as I was pouring a modest portion of food into Dar's bowl, because he so politely had tapped on his bowl to indicate that he was ready for his breakfast, I thought of how accustomed we had become to Henry's shenanigans. We came to expect it, to anticipate it - and to go through the same draining, somewhat aggravating motions several times a day. We didn't think it could be any other way - and so we just dealt with it.
And just like any other draining, aggravating issue you have to deal with, frustrations can run high, patience can wear thin, and resentment can set in. Don't get me wrong - I loved that little guy with all of my heart (and then some), but many of his troubles (getting up in the night to go potty outside, getting up in the middle of the night to get a drink, having accidents, lashing out because he was frustrated with his inability to see, whining because he didn't feel good) became my troubles, and it was hard. I would say particularly with a newborn in the house, but that really didn't make that big of a difference. Henry would have been a handful with or without a little one in the house. As it was, Deirdre came out smelling like a rose...sleeping through the night and conveying (through no words, just actions) what she needed and then being happy about it once she got it, both instances unlike her biggest pug brother.
Now that a little time has passed, I still miss him. I miss those eyes. That smush face. Those snorts, and that wag. But what I don't miss...is his illness. It was very hard on the household to work around Mr. Henry. And we did it because we loved him. But we sure wish it could have been different.
And that makes me know that every step I take toward living well - toward taking care of myself so that I'm not in a position of being sick, bed-ridden, or debilitated - is a good one. I never want to become accustomed to illness again - so whatever it takes, I'll be willing to give a little so that I don't have to give up a lot. Life with lupus could be very different. And in the future, I might have to contend with the fact that my illness is raging once again. But for now, I'm going to do what I can to stay healthy and out of trouble. I'm going to do my best to live well, despite lupus.
And I'll be sure not to bang on my food bowl. That will keep Johnny happy for sure.
Monday, April 12, 2010
Because last week was "tech" week for the play she is in, she was only able to come for half an hour (as opposed to 2 hours) everyday last week. And boy, was I a pooped pup by the end of the week! I'm blown away at how much it helps to have a real break (not just a nap) in the afternoon. Of course, I was able to get that nap in everyday (although one day, Deirdre didn't nap, but I still managed to get in a little shut eye), but that's it. Maybe an email or two during that coveted 30 minutes while the sitter was here, but nothing more. And often times, I was choosing to extend my nap just a bit because I just needed a little extra rest.
So now I know - it's not only 2 hours of sleep that I rely on a day...it's that additional 2 hours of "rest" time that my babysitter allows me. I guess I never realized how relaxing I make those couple of hours while Deirdre is playing her heart out with the sitter. She loves it - she cackles, and giggles, and runs around like a maniac while my beloved sitter is here. And I love hearing those sounds...it makes me feel better about having a sitter in the first place. But now...now that I've had an opportunity to run this little "experiment", I no longer feel guilty about booking help in the afternoon. I know my body relies on the break - that I'm a healthier, more energetic, more playful mother BECAUSE of it. We all need breaks - and I for one, give you permission to take yours! (Although you can't have my sitter...she's booked 4 days a week!)
Friday, April 9, 2010
Here's a quick history on the author, Dr. Beisser, taken from an article in the Los Angeles Times:
At 24, Arnold R. Beisser, having graduated from Stanford Medical School, completed his internship and planned for a surgical residency.
But it was 1950, the United States was fighting in Korea, and Beisser, a Naval reservist, was alerted that he was to be called to active duty. His residency had to be put on hold.
In the four months before his orders came, he devoted himself to his second love, tennis, winning a national championship and a high national ranking. He was young, strong, healthy and seemingly invincible.
Then, a few days after his 25th birthday, he was stricken with polio, paralyzed from the neck down. For two years, he would live in an iron lung, and any further recovery was minimal.
In the years since, he has built a life filled with love, laughter, friends and the rewards of a successful psychiatric career. His book, "Flying Without Wings," was a moving, inspiring chronicle of this 40-year journey.
I bookmarked dozens of pages in this book, but I'll share just two passages with you. Both of these really hit home for me - see what you think:
"Learning to surrender and accept what I had not chosen gave me knowledge of a new kind of change and a new kind of experience which I had not anticipated. It was a paradoxical change. When I stopped struggling, working to change, and found means of accepting what I had already become, I discovered that that changed me. Rather than feeling disabled and inadequate as I anticipated I would, I felt whole again. I experienced a sense of well-being and a fullness which I had not known before. "
Here's another one:
"If someone asked me if I would like to return to being able-bodied, my first question would be, "What would I have to give up?"
(He says his wife says the same about returning to her pre-rheumatoid arthritis state..."What would I have to give up?") He goes on:
"Things happened that we did not want, that we fought against to keep from happening, things that were painful and disruptive. But they brought unexpected opportunities once they happened, and there was no way of turning back. In order to see the opportunities, though, you must accept what happens as if you have chosen it."
Powerful words - and a worthwhile read. I'm honored that our friend thought that, after reading my book, I would enjoy and appreciate this one. I'll be lumped into Dr. Beisser's positive outlook on life any day!
Wednesday, April 7, 2010
I just made them this past week for our house guest (our beloved Tripp from PA), and I enjoyed the process thoroughly. There is one part of the recipe that gives me a bit of trouble - and that's the fact that you have to cut in chilled butter with your fingertips until a coarse meal is formed. There's no way around this step (believe me, I've tried); it seems foregoing a spoon/mixer/fork combination is the key. The fingertips give it just the right touch and the scones turn out perfect every time. But that massaging motion required by my fingers! Oh man - do my hands start to ache after about 30 seconds. Of course, it takes closer to 2-3 minutes to really work in the butter properly (although it may not be that long...it could just feel like it's that long!), so by the end, my hands are throbbing. There's nothing permanent about the ache, and it's not because my fingers are sore or hurting to begin with. My theory is that I'm simply prone to arthritis (via lupus), and this motion seems to just set it off (temporarily, of course.) The moment I stop, the pain goes away. Because of this, and because this recipe is so stinkin' good (when you make it just so), I put up with the 2-3 minutes of pain.
Here's the personality part - I could, theoretically, take breaks every 30-45 seconds to give my hands a rest, allowing them to stop, recoup, and then start again. But you know what? I don't. I'm just too stubborn/determined/driven/stubborn/task oriented to stop in the middle. (Happened to have read chapter 3 of Despite Lupus? If so, you probably already knew the answer to that question).
I just want to power through - getting it done as quickly as possible - and then be done with it. Sometimes I think that the faster I do it, the less it will hurt. Like the pain will just fall away due to my lightening fast speed - but it never does.
And so goes my own little personality indicator. My sister's knee deep in Myers-Briggs personality testing, and I've been her willing guinea pig thus far. I've mentioned this in the past, but it turns out I'm an ESTJ. I'm sure if ESTJ's around the world took my scone test, they'd fall in line. At least they better.
(Ooops - did I just say that?)
Of course, when it comes to lupus - and managing my life with the disease, I've worked very hard to temper my driven, determined, stubborn nature. I've had to - otherwise, living well would have been very hard to achieve. And you better believe I tried every way around that little dilemma before giving in.
Because I realized that giving in ISN'T giving up. In fact, it's the exact opposite. It's about working with the disease rather than against it, about dealing with it rather than just barreling through and trying to force it out of your life. There are more civilized, painless, mature ways to handle it...and if I really thought long and hard about it, I bet I look pretty uncivilized, pained, and immature thrashing around trying to rush through my scone making process.
That does it. Next time the recipe comes out - I'm going to take my time cutting in the butter. I'm going to take a break, at least every minute - and see how it goes. I'll keep you posted. I have a feeling it's going to turn out just fine.
Monday, April 5, 2010
Along with the miscommunication that happens in the doctor's office as illustrated by the "plums" event...I think of the medical jargon that's thrown around in conversation, leading to all kinds of "miscues'. Here's another example:
A girlfriend of mine has hemochromatosis - a condition that causes your body to absorb and store too much iron. When her blood tests indicate that she's reached an iron level that isn't safe, she has to have a significant amount of blood drawn (like one does at a blood bank)...which is a process called a phlebotomy. She was explaining this to a co-worker, mentioning that she'd be back in the afternoon after the phlebotomy was over. Her co-worker, mouth agape, just kept saying, "I can't believe you're coming back to work after that. Are you going to be okay? That's crazy." She'd never heard of returning to work after such a procedure. Why? Turns out, she was confusing phlebotomy with lobotomy - the psychosurgical procedure where the frontal lobes of the brain are separated from the rest of the brain. Yeah, I guess I can see why my friend might need the afternoon off, in that case!
Friday, April 2, 2010
I probably could have to, if I'd stayed up until 2am, working myself to the bone. But 2am isn't even an option for me anymore - truthfully, it's not even tempting. I know where a night like that would leave me...and it wouldn't be good. No, 2am isn't enticing...but 12am is. And that's too late for me, too. If Deirdre gets up before 8am, that's not enough sleep for me. I need 9 hours for sure, 10 on a good day.
But that list! Oh, how I wanted to knock a ton of those things off the list. And I had that adrenaline rush going, too. I wasn't too pepped up to sleep - but I was feeling very productive, and knew that I could stay up until midnight and get a lot done. But here's the question I have to ask myself: do I stay up late, get a ton of stuff accomplished so that I feel better about myself, only to feel worse the next day, and maybe even the next?
I have to look long and hard at the list of "things" (because in reality, they really are just things), and "pick my poison" - stay up late and pay for it, or turn in early and feel slighted about skipping out on my stuff. It's a choice - and one that I have to make almost every single day.
So the night in question, what did I do? I went to bed like a good little lupite - realizing that all of those pressing things weren't so pressing after all. You know how many of them were "due" the following day? One. Just one. I was getting myself in a tizzy, thinking everything had to be done now, and turns out, only one had a deadline of the next day. Glad I did a little prioritizing.
Now, because I talk about the importance of honesty in my book, Despite Lupus, I owe it to you (and myself) to be perfectly honest...not about that night, but about two nights later.
I got to looking at that list again, and started getting into my "doer" mode, and somehow, wound up crawling into bed at 11:45pm. Bad, I know. But here's what makes it worse - we'd been out late the night before at a concert (having the time of our lives, mind you), so I was already in a bit of a sleep deficit (NOTE: you can indulge every once in awhile...but you gotta pay up sometime.) And even though Deirdre had slept in the next morning (letting me catch up a little), she cried through most of her nap that next day - so I definitely didn't get a full afternoon nap. So did I need to get to bed early that night? You bet. No question about it - I should have been under the covers, lights out by 10pm. But that didn't happen. I guess I was just so pleased with myself for foregoing the to-do's a few nights back, I felt like I deserved to be able to stay up and tackle them.
And while I didn't end up in too bad of shape the next morning- I can't lie and say I was ache-free. I woke up with a pain in my elbow. Not throbbing, not swollen...but painful. It went away by the end of the day (after a very good afternoon nap which I did not skimp on), but it was a good reminder that every day counts. Every day, there's a choice to be made. And every day, I need to make it a good one.