Friday, December 30, 2011

Lupus workarounds - the reason for the pigtails

It was about this time last year that I talked of my latest (and hopefully last) round of hair loss. I'm happy to say that since that time, my hair has been growing strong - coming in curly - but still thick, dark locks. I've continued to keep my hair long, because it seems to give me more flexibility while I wait for my full head of hair to return. The locks that are growing back are about 50% of the way there - which is good for fullness, but bad for consistency. Leaving my hair to dry on its own usually produces a mess of curliness, and pulling my hair back doesn't really work, because half of the strands aren't long enough to make it. But, being the ingenious lupite that I am, I discovered that side pigtails are a great solution. All of the little strands are filed nicely away, and no one would ever know that something was amiss.

In fact, I've been putting my hair in pigtails for so long now (9 months +), that I even forgot why I was wearing pigtails in the first place. I went to a support group meeting last month, and one of my friends commented on my piggies, inquiring why I was sporting the cute new 'do. And you know what? I couldn't remember! I actually said something about putting Deirdre and Bernie in pigtails all the time, and that I must have been inspired.  It wasn't until I was driving home that I was thinking, "Why AM I doing pigtails all the time now?" And then it dawned on me.  It was actually an accommodation I'd come with. How about that!

I've shared a ton of tips on hair loss before, which you can read here. Let's hope that all of our workarounds can be as easily integrated into our daily routines as this one was for me!

Wednesday, December 28, 2011

Lupus and Pregnancy - Stability is key

I thought this article from Medscape News was pretty interesting - seems like I'm a perfect example of how successful a lupus pregnancy (or two!) can be, if and when your disease activity is stable. There was a time when I was told I shouldn't get pregnant, then a time when I couldn't get pregnant. Later on, once I'd come to embrace the disease, rather than fight so hard against, I decided that I wouldn't get pregnant - for the sake of my own health, as well as the prospect of a little life inside of me. But then fast forward a few years, and the time was right. I was healthy, I was strong, and my lupus was stable - a perfect setup for two perfect pregnancies. I'm not saying it's a guarantee for smooth sailing...but it sure does help, as the article indicates.

Most importantly, I found that preparation was key. I worked far in advanced with all of my doctors to ensure that I had the best chance for healthy pregnancies. Consult your rheumatologist, and find a good high-risk obstetrician BEFORE you plan on becoming pregnant. Deirdre and Bernie would agree - it's the only way to go!

Here are the snippets I like from the article - but you can read the entire article here:

 Women with stable lupus erythematosus have a far lower rate of serious complications during pregnancy than previously reported, even those with a history of lupus nephritis, according to data presented here at the American College of Rheumatology 2011 Annual Meeting.
The "extraordinary news," said first author and presenter Jill Buyon, MD, from New York University Medical Center, in New York City, is that just 15 patients (4%) had a severe flare during their pregnancy, and just 18% experienced a mild to moderate flare, most of which resolved without steroids.
Risk factors associated with poor outcome include slightly higher baseline disease activity (measured by clinical instruments and physician global assessment), the presence of lupus anticoagulant antibodies, slightly higher uric acid in the second and third trimesters, and a smaller complement increase as the pregnancy progresses.
"What the study says is that even patients with a history of lupus nephritis can do well during pregnancy," she said, assuming they become pregnant when their disease is stable and they are managed by maternal–fetal medicine specialists who specialize in high-risk pregnancies. "That's a really encouraging message to give these women."
associate professor of medicine at Emory University School of Medicine in Atlanta, Georgia, said most rheumatologists are "nervous" and "scared" about women with lupus becoming pregnant.
"I think this study is vitally needed," said [S. Sam Kim, MD] . "It gives us some more reassurance and direction. Any guidance we can have in terms of reproductive issues is extremely important in the field of lupus and the people we treat."

Friday, December 23, 2011

I do and I don't - contradictions in living with lupus

Our annual Christmas card. I love putting it together. I love getting the girls all dressed up, I love taking the photos, I love picking the perfect card for our perfect photos, and I love sending it out to all of our friends and family, ensuring that at least once a year, I connect with the people we care about the most. It's simply one of the best things I do all year.

It's also, ahem, one of the worst things I do all year. The girls love getting dressed up, but they don't like posing for pictures. Dar is a sweet guy, but it can be tricky to get him to look directly into the camera. Sorting through the list of addresses is fun, but making sure they're updated isn't. Printing the labels and making the mad dash to the post office - really, it's not all that great.

But I wouldn't skip it for the world. I love the finished product, and even the photos that don't make the card are ones that we look back on year after year, making us laugh and remember how much fun (and how much bribery) was involved.

This love-hate relationship reminds me of some of my lupus contradictions - a couple of which I've been able to sort out over the years.

When I was first diagnosed, I wanted people to notice and understand how sick I was. But at the same time, I really didn't want them to notice or understand how sick I was. I wanted to appear strong and resilient, but I also wanted those around me to understand how badly the disease made me feel, emotionally and physically. I struggled to find ways to talk about my illness - either I felt like I was lying when I said I felt great, or I was complaining when I expounded on my woes. I grappled with this for years after my diagnosis, but thankfully, over time, I realized what I needed to do first. Come to terms with the disease myself, and only then could I start helping others come to terms with it - in ways that would help my healing process, rather than hinder it.

Another issue I struggled with was my doctor's intervention. I'd often go to my appointments, desperate for my doctor to do anything he could to alleviate my symptoms. But then when my doctor would really intervene, like drastically upping my medicine, or admitting me to the hospital - I didn't like the consequences that came with it. I wanted to get better, but on my terms, not his. Today, of course, I realize that my doctor's intervention is an integral part of my health and wellness. If it weren't for the checks and balances he offers - with his constant questioning, tweaking, and retooling of my treatment - I wouldn't be here today. Truth is, I offer my own sort of check and balance system right back at him, but that's another post!

So here's to letting those contradictions continue to resolve themselves. Let 2012 bring less upset and more insight. And we'll let these three shining, happy faces remind us of that all year long!

Wednesday, December 21, 2011

Adding Raynaud's to the list: a real lupus phenomenon

I recently added another notch to the lupus bedpost. After almost 11 years with lupus, I’ve developed a new symptom.  My fingers now turn white and go numb in the cold. That’s right – I have myself a bonafide case of Raynaud’s phenomenon.

And I have to say – it can be painful! It’s a pretty common accompaniment to lupus – and up until October, I’ve always answered in the negative to my doctor’s question, “Do your fingers turn colors in the cold?” But that is the case, no longer. My fingers now turn ever-so white when I’m cold, going numb within seconds, with the burning and tingling following once the blood returns to my fingers 10 or 15 minutes later. Gloves help – but I find that exercising my hands and fingers helps the most.

So what is Raynaud’s? It’s an issue with circulation – and many times, a baby aspirin can alleviate the issue. But, just like many lupus patients, I’m already on a baby aspirin for clotting, so those 81mg are already working overtime elsewhere. Here’s the way my doctor explained it:

In the cold, our bodies constrict blood vessels in our extremities to keep our core (internal organs and the trunk area) warm. Usually, this constriction isn’t noticeable, and once the body warms up, the blood vessels open up again, and normal blood flow resumes - a process that should be seamless. However, in people with Raynaud’s, the blood vessels over-constrict, and blood flow is temporarily cut off from those extremities, causing fingers to go white. And if the blood vessels are over-constricted for an extended period of time, the body pulls the oxygen from the blood vessels in those extremities, causing fingers to turn blue. Once the body finally warms back up, the vessel re-open, and the blood madly rushes back to those poor, fledgling fingers – causing them to burn, tingle, and turn bright red. Nice, huh?

So – I’ve officially been inducted into the Raynaud’s gang. Interesting bit is that my sister-in-law, who has no signs of lupus whatsoever, has had Raynaud’s for quite some time. I’m in good company, it seems!

(And my doctor did mention that I could try mediction to help alleviate the issue...but I'm going to wait and see how annoying and painful this becomes first. If it's manageable without medicine, I think I'm just going to keep doing my finger exercises!)

Friday, December 16, 2011

All I want for Christmas...

is a clean website!

Seriously - this malware issue is going to be the death of me! Fingers crossed that my troubles are over. I've uninstalled my shopping cart, which we believe was contributing to the problem. It wasn't the cause, but it certainly wasn't helping things. So I had to make a fresh start.

My new and improved shopping cart, featuring my pillbags as well as the book, should be up and running shortly after Christmas. Until then, feel free to email me directly should you need to purchase a signed copy of Despite Lupus, or if you want to get your hands on one of those snazzy pillbags. I'd be happy to help you!

For now, I'm just ready to get back to blogging. I wasn't able to access the site until the malware was gone, but now, I should be free and clear to write. I have so much to catch you up on - the girls, my health - all of which are good, but of course, ever-changing!

So - look for a return of Despite Lupus posts next week. And Johnny says not to worry - he thinks there could be widespread panic among my readers due to my lack of posts. Let me assure you  - the reason I haven't been posting isn't because I'm sick - it's because my website was!!

And enjoy the last weekend before Christmas. I'm taking it slow and slow and steady, of course, as Bernie, Deirdre, my pillbag business, and the holiday scramble will allow.