Wednesday, September 30, 2009

On a roll with meetings galore!

I can't believe I'm still beaming from my lupus support group meeting a couple of weeks ago. It was a small group, but what a fabulous discussion we had!

The meeting consisted of just 7 people (allowing for a lot of banter back and forth), we were all "old-timers" (so no introductions needed), and we talked as much about jobs and vacation plans and as we did aches, pains and medications. And yet we covered a lot of lupus ground -talking about the difficulties of being photosensitive, having lupus fog, and trying to pinpoint lupus triggers, among many others. We laughed, we cried, cracked jokes, and poked fun (all in jest, of course) - weaving in and out of lupus-talk without hesitation. It was an effortless meeting - and it reminded me that we're not just a bunch of sick, downtrodden weaklings getting together every month. We're accomplished, interesting people first, lupus patients second. How refreshing!!

And then, if that wasn't enough to make my month, I had a dynamite book club meeting two nights ago. Another small, intimate group - but what a great discussion! We talked at length about our September book club book, A Prayer for Owen Meany by John Irving. I read it years ago, but still remember how much I enjoyed it. We talked about the book for a good bit of time, but, as is traditionally the case, ended up covering a whole host of topics. At one point, we got onto the Myers-Briggs testing - and somehow it came out that I'm an ESTJ. Any one else out there with me?

What a great group of ladies we had - and attending both meetings reminds me of how wonderful it is to connect, share, and brainstorm with others in a group-like setting. What an opportunity to exchange information and ideas - and, of course, I welcome yours on the topics above. Anyone out there love Owen Meany? Had any great support group interactions lately? Let me know - I'd love to keep the buzz going!

Monday, September 28, 2009

LF Disability Webinar - Be sure to check it out!

This is an announcement for the LFA Webinar. Hope you can tune in!

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Attorney Sheri Abrams to Host WebChat on Work/Disability/SSDI/Health Insurance for the Lupus Foundation of America

October 14, 2009 - 3:00 p.m.

The Lupus Foundation of America is proud to present live moderated chats, featuring the nation's leading experts in lupus. This is your opportunity to ask a question and learn more about lupus from thought leaders in a number of medical disciplines associated with lupus.
The LFA welcomes Ms. Sheri R. Abrams. Ms. Abrams is a Fairfax, Virginia, Attorney dedicated to helping people with Social Security Disability Benefits issues, as well as working with people to prepare Special Needs Trusts, Wills, Living Wills, a Health Care Power of Attorney, or a Financial Power of Attorney.

Ms. Abrams is a solo practitioner in Virginia, whose niche-within-a-niche is in the Special Needs area of estate planning, which requires additional care and experience, to properly understand and meet the needs of the community involved.

Ms. Abrams has received an AV Superior Rating, the highest ranking possible in the Martindale-Hubbell Law Directory.For more information on this webchat please click here.

Friday, September 25, 2009

The good old days...


So if Henry is going to get a little air time, I suppose Dar deserves a post, too. Just so happens that I already had a post brewing about Mr. DJ Wilikers (D for Darwin, J for Jarlath...don't ask.)

Just a few days ago, I took Darwin on a walk. Just the two of us. No Deirdre, no Johnny, and no Hen. Just me and old Dar. It reminded me of the walks we used to take while I was writing my book. I figured out so many passages during those walks. When I was stumped on a chapter, or had a case of writer's block, I'd leash up Dar and we'd hit the pavement. It would work every time.

It even works to cool my (ahem) temper, stubbornness, or frustration, should any of the three get a little out of hand. During our walks, I don't usually talk out loud - I just let it all simmer in my head...letting it work (or rather, diffuse) itself before I say things I might regret. Of course, every once in awhile I bounce things off of Darwin, who is the world's greatest listener (next to my husband, of course), and Dar always gives me the best answer. Silence. He just lets me work out all of my thoughts, allowing me to come to the right conclusion every time. I do think he gives me an extra pant or two when he likes what I've said. I'm sure it's a tactic they learned in pug school. These guys are real gems, I tell you.

So with the fall weather upon us, and even during those last few warmish days of summer, I encourage you to get out and take a walk. It doesn't have to be a long one, or a brisk one. It just has to be a thought-provoking one. Take advantage of the fact that it's still light after dinner, and just cool enough for a light jacket. Capitalize on the chance to work out your worst feelings toward lupus, or toward a situation at work, or toward someone close to you. Let those infuriating and frustrating feelings pound right out of you through your feet (or paws), and literally will those emotions away. I mean, look how happy this guy is. Not a care in the world. And you should see his face when he's on a walk...pure bliss.

Thursday, September 24, 2009

Walk-a-mania!!! Saturday, 9/26 - 8-12pm in Baltimore!

Despite Lupus is about to embark upon the nationwide tour of lupus walks - starting right here in Baltimore, MD. (Although getting up at 6am on Saturday morning to make it there doesn't quite translate to "right here" to me!) Next up on the tour - Seattle, WA on October 17th and then Richmond, VA on October 31st. Hope you can make one of them!

Here's the information on the walk - and be sure to look for me close to the registration table. I'll be the one sitting behind the pile of books!!! Don't forget to pick up your $1 off coupon on Saturday - good for the day of the walk only. Coupons are limited - don't miss out! Purchase a signed, dedicated copy before, during or after the walk - and get a $1 off the retail price of DL. What a deal!

Also scheduled to appear - Miss Deirdre (and her dad) in the flesh, along with a plate of homemade chocolate chip cookies. Both are too sweet to resist - so make sure you come by and say Hi!

Baltimore's Second Annual Walk for Lupus Now will start at 9:00 a.m. Registration will begin at 8:00 a.m. at the Y of Central Maryland-Harry & Jeanette Weinberg Family Center 900 E. 33rd Street. We will circle Lake Montebello. A two mile walk back and forth.
9/26/2009 8:00 am - 12:00 pm

See you there!

Wednesday, September 23, 2009

Mr. Independent

I never thought it would come to pass. I'm thrilled to announce that the day has arrived when I can leave Henry the pug outside alone to do is business.

Since he went blind over Christmas, Henry's had to be supervised whenever he goes outside to go poopy or potty. And I mean EVERY time he goes poopy or potty. It was typically a 20-minute excursion to let him do the deed...and you can imagine how l-o-n-g that 20 minutes seemed...especially when it stretched to 30-35 minutes. Yes, there was a time not so long ago when Henry couldn't be rushed - we just had to let him work out what he needed to work out in the time he needed to work it out in, painful as it was. But those days are over.

In fact, for about the last month, Henry has been Mr. Independent. Here's his new routine: Hendo indicates that he needs to go outside (either by whining - which is fine, since right after he went blind he wasn't so good at giving us signals) or by making his way through three rooms to the front door. Impressive, huh? Even more impressive is that we open up the door (and he knows to stop far enough away so that we can swing the door open), say - "Okay, Henry go potty/poopy outside" - and he saunters over the threshold, down the front stoop and away he goes. I close the door, go do my thing (or Deirdre's thing, should that be the case), and then 20 minutes later, I hear Mr. Hen either scratching at the door or whining to come in. I open the door, and there he is, sitting back on the stoop at the door, waiting to come in. (Looking absolutely adorable, I might add.)

***

It's a dream come true - I wish you could experience the joy and elation I had the first time he did it. After more than 7 months of watching and waiting for him to do his business...I couldn't be happier. It's like I get almost two hours of my day back (5 trips outside x 20 minutes = 1 hour and 40 minutes). I suppose it's not quite an hour of my day since Johnny and I usually split duties...but more often than not, we'd both end up out there because a) it was either too depressing to watch Henry wander around disoriented and confused alone, or b) it would take two of us to make sure he did his stuff while making sure Darwin (puggy #2) did his business and didn't wander off. We originally let Darwin out front with Henry to try and help teach him how to maneuver around, but in the end, it became a lot more work to have both guys out front, unfenced. So not only is Henry on his own now, Darwin is back to going potty/poopy out back in our fenced-in backyard. Unfortunately, I don't foresee Henry being able to tackle the two sets of steep stairs that are in our backyard...but then again, I never thought this day of independence would come, either.

***

I remember talking with a friend of mine who was relating his experiences with their blind dog a few months after Henry went blind. My friend was full of good advice and tips on how to help little Hen find his way around, but when I asked him how he dealt with having to stand out there with his dog while he did his business, he said, "Oh, we didn't have to stand out there with Joshy. He knew to just do his business and come back in." And I remember thinking, "We'll never be able to do that with Henry. Ever." He was just too dazed and confused (i.e. sick) to make sense of what he was supposed to do out there on his own. He would wander off, topple over, not go at all, step in his stuff, or whine, whine, whine because he was disoriented, upset, and scared. Oh - it was awful...but shame on me for not having faith in the original mr-pug-a-lot.

***

Boy, am I proud of him...and it reminds me of just how down and out we can become when lupus is in full effect. During a flare, it's practically impossible to see that you'll ever feel better. I specifically remember a time when someone in my support group told me that things would get better - and I definitely didn't believe her. It wasn't that I didn't want to...it was that I couldn't see how I would ever, ever, ever feel better.

***

And yet, given time, I did. And better yet - I still do. Let this be a reminder to those of you who have been told that life will get better with lupus. It really will. Sitting there today, you might not understand how it ever can, but have faith. I promise you that I NEVER thought Henry would be able to overcome his diabetes and blindness in order to fly solo while relieving himself. Ever. But if Hendomania can prevail...so can you.


All you have to do is get through today. Nothing more. You think this guy is trying to tackle anything more than that?

One day you'll wake up and you'll feel better. Perhaps not all better, but at least you'll see improvement. It will happen. Never lose hope. Mr. Henry never did.

Monday, September 21, 2009

I will survive!

Or should I say, I DID survive?

That's right - my babysitter, Leticia (who comes every afternoon from 1-5pm so that I can get in a good nap, send a few emails, and write a couple of blog posts) returned from her 3-month long summer trip to Honduras safe and sound. The political climate in Honduras wasn't pretty, so I'm so happy she's back. Of course, it's also been nice to have a little free time again.

I wasn't on my own for the whole summer - as I was able to fill most of June and July with a couple of different babysitters (one, in particular, that Deirdre and I just came to love!), but I went most of the month of August solo. That's right. Just me and the big D. And did we have fun! It was the greatest month, complete with a trip to see my parents...but a bit tricky to work in a guaranteed 1 1/2 hour chunk of time to rest. If you've been reading along on my blog, you know that this nap isn't just a need for a little "down time." It's an all out, eyes shut, blinds closed, under the covers kind of dead sleep. I need it, I know it, so I do it.

So how did I do it? Well, I just started sleeping when she did, regardless of whether or not I was particularly tired. Deirdre is an A+ sleeper, so it's not as though I didn't have an opportunity - but it came down to two things: a) was I willing to rearrange my schedule to adapt to her nap times and b) was I willing to forgo all of the other things I wanted to accomplish in order to accommodate my illness? Oh man. What a test of my will!

Turns out, I have what it takes to live well with lupus. Not only can I alter my 5-years-and-running 3pm nap time to 12pm, but I can also convince myself that the best thing I can accomplish on any given day is a good rest. All in the name of health and wellness.

So here's how it worked - when Deirdre went down for a nap at 11:30am, I went down for a nap by 12pm (instead of waiting until my normal 3pmish afternoon siesta.) I'd sleep for almost an hour and 1/2, sometimes a little less, sometimes a little more. Then Deirdre and I would eat lunch, slip over to the pool for a bit, savor a nice tall bottle mid-afternoon, and return home in time to take another snooze around 4pm. Trick was that this 2nd nap of hers was a little iffy. Since I couldn't count on the fact that she'd rest, I couldn't guarantee that I'd be able to rest. Thus, I'd get all of my rest in at noon, and if she rested again at 4pm, I'd tack on a bonus 30 or 45 minutes of rest. Oh boy - did I feel great! I'd never gotten so much sleep.

Problem now, is that since Leticia has returned, I'm having trouble readjusting to one nap. My body's used to taking a nap around 12pm...AND an intermittent late-afternoon nap. Right now, I'm just giving into it...but long term, I'd like to get back to napping once a day. I'll keep you posted!

By the way - thanks for bearing with me and my sporadic postings over the last few weeks. Now you know why I might have missed a day here and a day there. Hanging out with Deirdre is a full-time job! (I know, I know - all you moms out there are saying, "uh, duh!!!!")

Friday, September 18, 2009

Free flowing tears...

I cried twice yesterday. In both cases, I was talking with friends, and my tears came in response to stories they were relating to me. Neither instance was a bawl-your-eyes-out kind of thing, but the tears were definitely there, and I had to take a few seconds to compose myself before continuing on in my conversations.

The first bout of tears came because a friend of mine told me that a friend of hers is being tested for an assortment of auto-immune diseases, and after almost 6 weeks of being sick, a trip to the ER, a 3-day stay in the hospital, a doctor or two had the gall to tell her that her symptoms might be all in her head.

Raise your hand if you've ever heard that one before.

Doesn't that just infuriate you? I mean, there you are, sick as a dog, desperately seeking help from the people who are best equipped to give you answers, and they come back with the old "maybe it's mental" thing. Come on, doc! Is it just a kind of a default when you can't pinpoint a medical explanation for what's going on?

I can tell that in the almost nine years that I've had lupus, my beloved Dr. R (my rheumatologist) has never, and I mean NEVER, suggested that a symptom I've brought to the table was "all in my head." And it's not as if the manifestations of my disease haven't stumped him. There have been numerous times when my reports of swellings, infections, pain, or discomfort couldn't be explained - and yet he never stopped trying to uncover the source of the issue. He'd phone another doctor during an appointment, refer me to another specialist, or do a little research on his own to try and come up with a remedy. And with every effort he made, I felt that much better about the care and treatment I was getting. I wasn't alone - he was right there with me - and in some small way, knowing that someone believed me was enough to give me hope.

Truth is, I'm not sure what I would have done if he'd told me my struggles were all mental. I think I might have cried...just like I did today when my friend was relating the story to me. It's just a crummy, crummy deal - and absolutely inexcusable in my book. Feel free, of course, to shoot me an email or write a comment if you've ever been treated this way. I'd love to let my friend know that she and her friend aren't alone!

My second bout of tears came when a friend was telling me about a car accident her son had been in this past spring. She'd gotten the call in the middle of the night, and rushed over to the hospital the moment she'd heard. She met him there, in the trauma unit...and was overwhelmed with emotion when she saw him laying in bed, bones broken, cuts everywhere. He almost didn't make it - and now that I'm a mom, I realize that there's nothing I want more than to save my sweet little Deerdeepants from ever experiencing pain like that.


I know, I know - overprotecting your kids isn't a good thing...but I'm just talking about never wanting to see my baby doll suffering so.

Come to think of it, I'm sure my mom didn't want to ever see me in such pain and agony as a result of lupus, either.

Ooops, there I go again. Make that three times in two days.

At least lupus hasn't made me a hard-hearted Hannah.

Monday, September 14, 2009

Invisible Illness Awareness Week

Don't forget - Invisible Illness Awareness Week begins today through the 20th of September. Stop by their website to see what's in store - guest bloggers, seminars, and much more!

Enjoy!

Thursday, September 10, 2009

Letting go of lupus: reevaluate...

Here's another excerpt from my book, Despite Lupus. This post and many others from lupus bloggers across the internet may be featured during the upcoming Invisible Illness Awareness week, September 14th-20th. Feel free to stop by II Week's website to find out more!

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REEVALUATE YOUR METHODS OF GETTING WHAT YOU WANT

Since the day of your diagnosis, you’ve wanted one thing only: a life free of lupus. You’ve prayed and begged for your chronic illness to go away, knowing that would be the easiest way to regain your familiar way of life. You may even have made a few bargains along the way, saying “If my disease would miraculously go away, I promise I’ll never [blank] again.” But frustration has set in because your wishes haven’t been granted. In fact, it may seem like your pleas are being ignored. You wonder what part of “Heal Me” God doesn’t understand. Perhaps this is a better question to ask: what part of the puzzle don’t you understand?

Right now, you see a complete physical healing as the only assurance of regaining a life worth living. But what if a perfectly-functioning body isn’t yours to have at the present time? More importantly, what if it doesn’t solve the larger issue that looms over you – the long-term emotional effects of being diagnosed with a chronic illness? You’re a different person than you were before lupus arrived; denying that is ignoring the essence of who you have become. The remedy for the hopelessness you feel due to your physical ailments may lie in an emotional contentment you haven’t yet considered.

I found the same to be true in my struggles with lupus. Every day for years, I prayed that God would heal my broken down body. I wasn’t expecting a miracle, but I had come to believe that, if I were patient enough, I would get the physical healing I wanted. As the disease worsened, I grew more discouraged. Why wasn’t God listening to me? Maybe I wasn’t being clear enough. Or maybe it wasn’t a healing I needed, but an understanding of what was realistically in my future. By changing my focus, my frustrations caused by having made such little physical progress went away, replaced with an appreciation for the emotional acceptance I instantly was capable of achieving.

"Prayer is not asking for what you think you want, but asking to be changed in ways you can’t imagine."

Instead of perpetuating the short-sighted, limited notions of how you can physically mend your broken body, start working toward that which can be realized immediately – a healthy acceptance of where you are in your life today. You’ll no longer be chasing a hopeless, unreachable goal of living well without lupus. Your objective will become living well, despite lupus.

***

Excerpt taken from Sara Gorman's book, Despite Lupus: How to Live Well with a Chronic Illness, available at http://www.despitelupus.com/.

Quote taken from Anne LaMott's book, Grace (Eventually): Thoughts on Faith, as reprinted in the “The Up Side” feature of the May 2007 issue of Guideposts Magazine.

Wednesday, September 9, 2009

Twitter's role in the state of our health

Check out this article found in a recent online issue of Daily Finance. I'll be sure to mention today's post on my twitter account, too. It's only appropriate, don't you think?!

***

Rx from doc: Read this tweet and text me in the morning
by Eric Wahlgren

Twitter's fans say the microblogging service helped Iranian opposition parties organize after the country's disputed presidential elections in June. If Twitter's good for our political health, can it improve our physical health too?A growing number of doctors, hospitals, and health agencies seem to think so. Physicians and hospitals increasingly use Twitter not only to keep up on the latest medical developments, but also to blast health news to patients, Telemedicine and e-Health notes.

Some 167 hospitals have Twitter feeds, the magazine reports. One early adopter is Anne Arundel Medical Center in Annapolis, Maryland. Launched in April, the hospital's Twitter feed had 175 followers in its first month and has been adding about five a day, using Twitter to circulate hospital news and direct patients to its website.So far, it hasn't been dispensing health advice, though. And that's a good thing: Sending key clinical advice to a wide audience could be risky when often the appropriate treatment or therapy depends on a patient's genetics and conditions. And physicians who play fast and loose with the keyboard could violate all sorts of privacy regulations, if some identifiable tidbit about a patient ends up in a tweet. "Under no circumstances should patients be referred to by name or other identifiable means, even via direct messages," Michael Lara, a tweeting psychiatrist in Belmont, California, writes on his blog.

But Lara believes the service can improve patient care, giving doctors an easy way to share general medical information and to do curbside consults. It also facilitates live-blogging from medical conferences, letting physicians keep up on best practices even if they can't attend. Lara stops short of recommending Twitter for communicating directly with patients and their families, or for conveying urgent information.

The Centers for Disease Control and Prevention has been active on Twitter for a while, having three separate feeds including an emergency feed designed to keep followers abreast of major public health events like the H1N1 flu outbreak and peanut-product recalls, Telemedicine and e-Health reports.Indeed, the use of Twitter and services like it will be most effective in promoting general, not individual, health. Applications could include tweeting about diabetes management, smoking cessation, infant-care tips to new parents, and drug safety alerts from the Food and Drug Administration, nurse-blogger Phil Baumann suggests. Question is, will there also be tweets on how to treat repetitive stress injury from too much thumb action by Twitter junkies?

Tuesday, September 1, 2009

Another lupus drug in R&D

Special Announcement from ALR - Alliance for Lupus Research. Check it out!

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News Bulletin on Drugs in Development:
Epratuzumab shows positive effects on people with lupus in Stage IIb trial

Late last week, two biopharmaceutical companies, UCB and Immunomedics, announced promising results of their phase IIb study for epratuzumab, their drug in development for treating systemic lupus erythematosus (SLE, or lupus). This is hopeful news for all those affected by this autoimmune disease.

Epratuzumab, developed by Immunomedics and licensed to UCB in 2006 for possible treatment of autoimmune diseases, is a humanized anti-CD22 monoclonal antibody with the potential to modulate B cell activity. Although the exact role of CD22 in autoimmunity is not fully understood, it is considered to be a negative regulator of B cell function.

B cells are known to contribute to lupus by producing antibodies against the body's own cells and tissues, causing the immune system to turn on itself and resulting in the inflammation and tissue damage that are the hallmarks of lupus. UCB and Immunomedic's released trial results showed that the treatment advantage of epratuzumab over a placebo reached 24.9% at week 12.


WHAT THIS MEANS FOR PEOPLE WITH LUPUS:


UCB will better understand how to design a potential phase III trial studying many more patients. The results of the phase IIb study will help give UCB researchers confidence in determining best dosage and frequency when the larger scale clinical trial is designed. Very basically, this trial gives UCB researchers useful data for moving epratuzumab further down the clinical pipeline, giving people with lupus another glimmer of hope for a potential new therapy for the disease.

As Anna Novotney Barry, UCB's Clinical Program Director said, "This 12-week study was specifically aimed at identifying the best dose of epratuzumab, dosing regimen, and primary efficacy endpoint to take forward to the larger phase III confirmatory trials. We are delighted to report these positive results, which have provided essential data which create the foundation for our planned phase III clinical program."


This promising news about epratuzumab was made possible in part through your support of the
Alliance for Lupus Research (ALR). The ALR has strongly supported B-cell inhibition and depletion research, going back to some of our very first grants funded, now nearly ten years ago.
Since inception, the ALR has funded almost $5-million in the area of B-cell research.


"Among the research efforts of many lupus investigators and along with support from many generous donors and funding sources, the research projects funded by the ALR have had a particular emphasis on control of B cells. These positive new data add to our growing sense that this B cell research is bearing fruit. We will watch for future results from epratuzumab studies with great interest."
- Mary K. Crow, M.D., Chair, ALR Scientific Advisory Board

About the ALR: The Alliance for Lupus Research (ALR) is the world’s largest charitable funder of lupus research. 100% of all donations to the ALR support innovative medical research focused on preventing, treating, and curing Systemic Lupus Erythematosus (SLE) or lupus because the ALR’s Board of Directors funds all administrative and fundraising expenses.