Monday, January 30, 2012

Role Reversal - As a caretaker, I need some practice.

I mentioned in an earlier post that the cold and flu bug had made an unwelcomed stop at our house this winter. Turns out he wasn’t quite finished with the Gormans, as of my last posting on the subject. Turns out Johnny had a very up close and personal visit with Mr. Flu Bug – and man, did he suffer. Johnny was down and out for almost a week. He had a fever and was achy and fluish for at least 5 days, confined to the bed for most of that time. By the 6th day, he still wasn’t himself, but there was hope. And for those of you wondering, no, he did not get a flu shot this past fall. But ask him his plans for next year – I think his feelings on the subject have since changed.

What did this mean for me? It meant that I had a crash course in Caretaker 101. Now – for the record – Johnny’s a good patient. He doesn’t ask for much – and when he does, he tries to ask for everything (i.e. toast, a cup of coffee, a glass of orange juice, some water, a new Kleenex box and a medicine refill) all at once, rather than calling me in every fifteen minutes for something new. And he’s a discreet sickie – no complaints, heavy sighs, or excessive moaning and groaning. He just lies there and takes it like a grown up. But, the fact that he was sick still required a skill set that I haven’t exercised in a long time, if ever.

Sure, I take care of my girls…but that’s different. They’re…my girls. They don’t know enough to ask me to get some medication from the drugstore, or to call the doctor, or bring them more fluids. I initiate all of the caretaking in the case of Deirdre and Bernie, and it’s very different from catering to a sick and homebound adult.

So I had to brush up on a few things, primarily the virtues of patience, consideration, and kindness. I learned how to put someone else’s needs above my own personal agenda, and hopefully, not make it seem like I was doing so. I was reminded of the value of conversation (because Johnny was in no condition to chit-chat), the benefits of running a household with the help of someone else, and sharing the responsibility of child-rearing. As I retrieved extra blankets, water bottles, and cough drops, I was reminded how many times Johnny had taken care of me. How many days on end he’d tucked me into bed, sat with me while I took my temperature, brought me warmer pajamas, or filled up my water glass. I remember Johnny doing everything he could to make me as comfortable as possible – and never making me feel like I was asking too much. And most importantly, doing that day after day after day.

A bout of flu typically lasts a week, and both Johnny and I are ready for this flu bug to get on its way for good. And yet, a lupus flare doesn’t have the luxury of being confined to a week. A flare can last for weeks, if not longer. That’s why I’m committed to keeping those flares at bay. I certainly won’t hesitate to put Johnny in the role of caretaker if need be, but if I can do anything to prevent it, I’m certainly going to try!

Friday, January 27, 2012

Good news for Biologics - no increased risk of infection

Medscape News featured another article that might be of interest to those of you currently on or considering  treatment with a biologic.

From the article, it appears that the focus groups consisted of patients with RA (Rheumatoid Arthritis), IBD (Irritable Bowel Disease), and psoriasis, psoriatic arthritis, or ankylosing spondylitis (psoriasis and spondyloarthropathies). No lupus was present among the patients, but the drugs discussed in the article are definitely within the lupus cocktail of medications, keeping lupus in the mix for possible future treatment with biologics. Of course, Benlysta was a major breakthrough this past year - which I imagine serves as the best example of a biologic treatment for lupus, to date. Here's a snippet from the article:  

"We think there is a lot of controversy about whether these drugs [biologics] increase the risk of infection," said lead author Carlos G. Grijalva, MD, MPH, from Vanderbilt University in Nashville, Tennessee. "Data from clinical trials suggest that they can increase the risk, compared with placebo, but you know that these patients have other alternatives and can receive other nonbiologics." The real question, he pointed out, should be whether the biologics increase the risk for infection relative to nonbiologic options. "That is exactly the question we tried to answer."

The study results "should be reassuring for patients and providers," said Dr. Grijalva, "because we observed that the use of these medications is not associated with an increased risk of infection — except for infliximab in the RA population."

 "The takeaway is that while the biologics are not without risk, it is further reassurance that what risk there is is reasonable and appropriate, given the benefit of the drugs," he explained.

You can view the entire article here. 

Wednesday, January 25, 2012

Changing what we can - nothing more, nothing less.

In gearing up for my speech this weekend, I came across a selection in my book that I haven't thought about in awhile. But oh, how true it is. I think my post last week reminded me that our lives with lupus are bound to change over time - we evolve, our disease evolves - and the best we can do is attempt to make positive changes when and where we can. And while it's important not to spend time or energy struggling with issues that we can't change - I like to focus on the proactive side of the equation. That is, the fact that we must take ownership and responsibility for those issues where we can affect change - like our sleeping habits, allowing ourselves sufficient downtime, and accepting help when we need it: 

"While you can’t shed your disease, you can accept the challenge of living with it,
and embrace the life you have. You were smart, successful, happy, and independent
before lupus. The difference now is that you’re having a hard time believing
you still are. The secret to restoring faith in yourself is to focus on areas of your
life where you can still make an impact. Don’t waste time on aspects of life that
cannot be altered, like the fact that you have lupus. Instead, concentrate on areas
where you can affect change. Doing so will bring you the satisfaction, feeling of
influence, and inner strength you’ve been craving."   ---Despite Lupus: How to Live Well with a Chronic Illness. 

Here's to taking these words to heart, and believing that we can still contribute, we can still affect change, despite our illness!

And if you need an extra little kick - you can read (and recite) the Serenity Prayer a couple of times. That usually does the trick for me!

Monday, January 23, 2012

Join me in Reston, VA on Wed., Feb 1st - Author tells all!

Despite Lupus is on the move again. Following my upcoming weekend in Fort Wayne at the Lupus Foundation's Indiana Chapter Symposium, I'll be back in Virginia speaking locally at one of the Foundation's support groups in Reston. 

I'd love to see you - and look forward to sharing more thoughts and strategies for living well, despite lupus. Here are the event details - and you can register for the event here. (FYI - Just like all of the D.C./Maryland/Virginia events, the event is free of charge.)

WHEN: Wednesday, February 1, 2012 at 6:30 PM (ET)

WHERE: Reston Community Center 2310 Colts Neck Road RestonVA 20191

And if you have any questions that you'd like to pose beforehand, or topics that you know you'd like me to touch on, feel free to shoot me an email. I'll look forward to hearing from you!

Friday, January 20, 2012

New blood test for lupus. Could it be?

Word in Pittsburgh, PA is that there's a new blood test that can help to more accurately diagnose lupus. You can read the entire article here, but here are the highlights:

A new blood test that researchers in Pittsburgh developed to help doctors better diagnose lupus now is available for everyday use.
Drs. Joseph Ahearn and Susan Manzi of West Penn Allegheny Health System began working on the test about a decade ago at the University of Pittsburgh, said Jennifer Davis, a system spokeswoman.
"...Up until now, there really was no specific blood test for lupus, which led to it being grossly misdiagnosed," Ahearn said. "This test is far superior and will result in more accurate diagnosis." The test is now available for use to patients and doctors nationwide. 

Three cheers for the new blood test. Yippee!!!

Wednesday, January 18, 2012

With lupus, change never goes unnoticed

If the fatigue I mentioned on Monday wasn't enough of a false alarm - my most recent malware alert sure was! You know I've had my fair share of issues with my website and malware - but thankfully, all has been clean and clear since I made a clean sweep of my site. (Thank you, Kevin!)

But just last week, I made a minor change to my website which I expected would be seamless, but was anything but. I switched hosting companies so that I could have my new site alongside my site, but my malware scanning service didn't like the change. In fact, they saw the interim site that went up while the change took place as a glitch, tagged it as malware, and alerted me that my site was infected. Eek! But I remained calm (or relatively calm, since this malware has eaten up enough of my time and energy to launch a million websites), and alerted the professionals. They got on it, and indeed, confirmed that the scanner was confused - all was well - and I could keep on keeping on.

But seriously. I didn't need that fire drill.

Well, maybe I did.

Maybe it's a good reminder that change, at least as far as lupus is concerned, doesn't often go unnoticed. Sometimes I try and trick myself into thinking that I can push the envelope when it comes to changing up the routine. Like my nap routine - or my medication routine - or my easy-does-it-on the errands routine. And now with this Raynaud's, even a change in temperature doesn't slip by me. I need to bundle up like everyone else in the world when it's chilly. No more little fashion plate numbers that I try to pass off as coats when it's below freezing. And    even if my gloves don't match - they need to be worn. Without fail.

I think the biggest change in routine that I try to convince myself will go unnoticed is my compulsion to multi-task. No matter how hard I try - when I attempt to juggle 27+ things - it just takes its toll. I wish it didn't. I wish it could be like the old days before lupus, when my plate was piled high with demands and deadlines, and I could make every single one of them happen. In fact, I thrived off of the pressure to do so. Now - when my plate gets overloaded...I just get tired. And frustrated because I'm tired. And then I get tired of being frustrated.

But it's okay. I've found that there's power in knowing your limitations, and finding creative ways to work within those constraints. Change is what it is - and in most instances, it's a good thing. I'm a mom now...and I wasn't before. I'm now an author with a blog and a book...and I wasn't before. I'm now an entrepreneur launching a line of toiletry bags...and I wasn't before. It's exciting, challenging, and fun...and an opportunity to learn how to balance all that while living well with lupus. Guess I have my work cut out for me, eh?

Monday, January 16, 2012

The flu and cold bug camps out - lupus fatigue crisis averted!

To say that the winter cold and flu bug made a pit stop at our house this Christmas is a bit of an understatement. He more or less camped out at the Gorman household for the past 4 weeks, causing at least someone in the house much pain and sickness every night of his stay. I estimate we've been through more than 30 boxes of Kleenex since the week before Christmas. With five family members all fighting off coughs and colds, we definitely had our own little pharmacy going here. I'm finishing up my antibiotic now, and the girls are finally finishing up those runny noses. I won't say we're completely in the clear just yet...but there is light at the end of the tunnel.

That said, two weekends back, the tunnel was looking pretty dark. I'd been fighting off my cold for about two weeks, but had been recovering nicely. You know how it is - the itchy nose and scratchy throat begin, then the cold comes on, and there are a couple of days where you're just really down and out...and then the tide turns and you know the cold will be ending within a few more days. Well - that's just what happened, and I was coming out of it just fine. And then, one Sunday midday- my old friend fatigue hit, and I thought I'd taken a turn for the worse. A lupus turn, in fact.

I started feeling the fatigue that morning during Mass, and quickly realized I was running out of gas, and fast. It was just Deirdre and me, as we'd left Johnny and Bernadette home to nurse her runny nose, so we  headed home immediately. By the time we arrived home, I knew I needed to deal with the fatigue immediately.

I laid down on the couch, and Johnny immediately took over. The girls were playing all around me, but I fell asleep within minutes. It was just like my old lupus days - where I could fall asleep anywhere and at the drop of a hat. Good news, is that when I woke up over an hour later, I felt rested...which gave me hope. We put the girls down for their naps, and then I laid down again, and caught another 2 1/2 hours of sleep. And after that - I was good as new. I took it a little slow that evening, making sure that my perfectly rested body wasn't playing tricks on me, but that fatigue was gone, and with it, my concerns of a lupus flare. Guess I just needed to do a little catching up from the cold. So crisis averted...and I've never been so relieved.

Between my naps, my mind definitely went into hibernation mode. I made a mental list of all of the things I was going to have to offload - knowing that if a lupus flare was upon me, all those things that just "had" to get done weren't even going to make it onto a to-do list.  It was a good reminder that all of those "shoulds" aren't as pressing as I make them out to be. And it reminds me that should I be tempted to skimp on my nap, run myself ragged during the day, or stay up way too late at night - there are consequences to my actions. Nothing like a little fatigue fire drill to keep you honest and on the path to living well!

Friday, January 6, 2012

Lupus nephritis - biopsy for all?

Here's another interesting article from Medscape News - reporting about the the first guidelines ever developed for the management of lupus nephritis. The recommendation is that physicians biopsy all patients who present with clinical evidence of active disease (lupus nephritis, that is), classify the disease stage according to the International Society of Nephrology/Renal Pathology Society classification system, and manage the disease on the basis of this classification.The guidelines were presented at the American College of Rheumatology (ACR) 2011 Annual Meeting.

You can view the whole article here, which also talks about managing the disease with plaquenil and the use of angiotensin-converting-enzyme inhibitor or an angiotensin-receptor blocker - commonly referred to as hypertension medications, if and when protein in the urine is at least 0.5 g/day.

Remember a few months back, when I was so shocked that my doctor prescribed Cozaar for the protein in my urine? Guess he knew what he was talking about! (Of course he DID. I'm just saying...)

And kudos to my girlfriend in Ottawa - who recommended I get a baseline biopsy back when I told her about my increased protein. She totally knew what she was talking about. Thanks, Karen!!

Wednesday, January 4, 2012

Shutting down...physically AND mentally

As mentioned in Monday's post, I'm gearing up for my next speaking engagement on January 28th in Fort Wayne, IN. The details are set - flight, hotel, car - and my presentation is just about there. Over the past week, I was working like mad to finish it up - first, because I've learned that procrastination doesn't lend itself to stress-free, disease-free living, and two, because my au pair started her two-week vacation earlier this week, and my free time is, well, no longer free.

I did my best to pace myself, and I'm happy to say no sleep was sacrificed in the preparation of my presentation. I didn't pull any late nights, and I didn't get up at the crack of dawn to work on it. I set aside time during the day when Paola could help with the girls, starting when I intended and stopping when it was time. I even held myself to the stipulation that I'd work only 30 minutes after the girls went to bed for their naps. This continues to be the hardest thing for me to adhere to - but I'm proud to say that there wasn't a single day when I was still pounding away at my computer past 2:30pm, the official start of my nap.

So while I can proudly proclaim that my computer was off and I was in bed for the start of my nap, I can't say the same for my mind. I may have physically shut off access to my presentation, but mentally, the ideas were still flowing. It was practically impossible to stop my brain from organizing the thoughts in my head - mapping out slide after slide of how the presentation would go. Good news is that I realized after just a day or two that I simply can't work right up until my nap. I need to disengage and disconnect (literally) about 30 minutes before trying to rest. It's just the way it goes. I've blogged about this before - but it's been awhile since I've experienced it first-hand. The lupus lessons just keep coming, don't they?

Monday, January 2, 2012

Despite Lupus Road Show - Fort Wayne, IN, here we come!

Despite Lupus is back on the road again - this time heading to Fort Wayne, Indiana at the end of January. I'll be speaking at the annual Lupus Foundation symposium, and looking forward to it. Here are the details of the event - let me know if you'll be there!

‘Living with Lupus’ Symposium
 Saturday, January 28th, 2012, 9:30 - 1:30pm
 Lutheran Health Network – Dupont Hospital
 Function Rooms 3 and 4
 Fort Wayne, Indiana

For more information, feel free to check out the Indiana Chapter website. I'm finishing up the details of my presentation now - titled "Listen Up, Doc!" I'll discuss the strategies I've learned for dealing with doctors and making the most out of appointments. So many doctor visits, so little time, right?

Hope to see you there!