Friday, June 27, 2014

The subject of lupus hair loss: out in the open works for me!

One of the little girls in our neighborhood has, what I consider, a bad habit. She likes to whisper. And tell secrets. And it drives me crazy.

She'll knock on our door, and politely ask Deirdre if she can come out and play. Deirdre will say that she has to ask her mom, and before I can walk over to the door and say yes (or no), Neighbor Girl will lean over to Deirdre and start whispering something in her ear. I'm sure she's not saying anything of consequence, but I imagine that she's saying, "If your mom says no, we'll string her up by her toenails" or something equally as devious and disrespectful. Neighbor Girl does it when they're outside playing with other kids, too. Regardless of how many little girls are playing, Neighbor Girl will inevitably pull Deirdre aside and whisper something to her. It's awful. The other little girls always feel left out, and almost shunned. I've explained to Deirdre that whispering is simply inconsiderate, and she's learned to tell Neighbor Girl to just speak up so everyone can hear. I've also made it a neighborhood rule that at our house and in our yard, there's no whispering. It makes people uncomfortable, and you're always leaving at least one person out of the conversation. If you can't say what you want to say aloud, maybe it shouldn't be said in the first place, right?

I think this principal may be one of the driving forces behind my eagerness to talk so openly about lupus. I would much rather get it out in the open, then give people the chance to secretly wonder (or talk) about what's happening or why. I remembering feeling this way at work, almost immediately after being diagnosed.  I preferred to be open about what the disease was and how debilitating it could be, rather than keeping it hidden. That way, when I missed work, had doctor's appointments, or was feeling ill, there weren't secret conversations about why. I'm sure there was still talk, and I personally (and probably, mistakenly) tried my best to push through the illness (which deserves a separate blog post of its own!), but I felt that by talking about it, I'd at least encouraged honest and open conversation.

I find the same to be true with my current bout of hair loss. The hair is continuing to fall, with increased intensity, I'm sorry to say. I have yet to have any bald spots exposed, so right now, I have a nice, even layer of hair over my head - thin, though it may be. And although to the naked eye, no one would guess that I'm experiencing hair loss, I find that my face takes on a slightly different look, because my hair is so close to my head now. (Those of you with hair loss - I'm sure you know what I mean!) Many friends and family say, "Is your hair shorter?" "Did you get it cut?" They can't figure out what is different, just that something is different. And that's okay. I usually take the opportunity to explain, simply because a) it's an easy way to briefly touch on lupus symptoms, and b) because as the summer progresses, and my hair loss progresses, I can continue to openly talk about it, thus eliminating the whispering, wondering, and secrets. Don't get me wrong - I'm sure that happens, too - but I'd just prefer to have it out in the open. I think it encourages questions, comments, and truthfully, compassion. Every third person I've met has experienced hair loss - and I'm always game to swap tips. It sure beats feeling left out or ostracized because people feel compelled to whisper about it.

So if you see me, feel free to ask how my strands are hanging in there. It's certainly top of mind for me...no pun intended!

Wednesday, June 25, 2014

Something's Gotta Give!

Oops! I've been short on time this week! No Johnny (he's traveling) + no babysitter (she's on vacation) = no blog posts. Check back in a few days, though. I hope to be squared away by then!!

In the meantime, note that the Pillfold Amelia and the Pillpouch Bordeaux are finally back in stock. Hooray! Click over to www.pillfold.com today!


Friday, June 20, 2014

S.L.E. Lupus Foundation Webinar - June 26th. Be sure to tune in!

S.L.E. Lupus FoundationThe S.L.E. Lupus Foundation has a great webinar coming up next week you won't want to miss! 

It's called "Everyday Living with Lupus: Be Proactive", and will take place on Thursday, June 26th, from 12-1pm, EST. The summary of the event is below: 

Living with a chronic illness can be very challenging. One way to cope with lupus is to be proactive about your health, including your overall wellness. This webinar will give you some ideas on how you can manage and cope with lupus on a daily basis. Learn some ways you can live life through a lens of wellness and begin to build or expand your coping toolkit. 
Attendee Takeaways:
  • Learn what it means to be proactive
  • Identify what you can and cannot control in your life
  • Approach health through a wellness lens
  • Build your coping toolkit

Y   You can register for the event here. If you haven't participated in an S.L.E. Lupus Foundation webinar before, it's easy to sign up. I did an online event for them a few years back, and I was a webinar-newbie back then, too. Don't hesitate to register. It's sure to be a good one!

Wednesday, June 18, 2014

The lupus drug of choice: Plaquenil Guidelines Revisted

As a follow up to my recent post about my visit to the opthomalgist for an ERG, I thought I'd offer a link to the revised guidelines for Plaquenil toxicity (i.e. when and how plaquenil can adversely affect the eyes). The link was provided by a faithful reader in the comments, so thanks so much for sharing, D!

When I went in for my ERG, my doctor, who I knew was on the cutting edge of Plaquenil toxicity, mentioned that he'd taken part in revising the guidelines, but it was fun to see his name mentioned in the credits of the official document. My eyes, particularly my retinas, feel extra special now!

In addition, here's a link to another article touching on the subject of how much plaquenil we should be taking to decrease the chances of ocular side effects.

If you do take a moment to read the guidelines, please be sure to discuss any concerns or questions with your doctor. The revised guidelines do suggest that the standard dosing of plaquenil may be too high, but it's imperative that you work with your doctor to determine what's best for you. Every lupus patient is different, and we must work WITH our doctors, not against them!

Thus, before making any changes to your medication regimen, please discuss with your doctor.


Friday, June 13, 2014

ERG test: Advancements in eye exams to test for plaquenil toxitity right around the corner!

As far as tests go, the ERG is not one of my favorites. The ERG, or Electroretinography, is one of those tests that seems to last way too long and comes up way too fast. When the scheduled appointment comes up on my calendar, I'm find myself thinking, "Didn't I just have one of these?"

Of course, like many of the tests that we have for lupus, and the side-effects of the medication we take for it, (of which the ERG is one), it's a necessary evil. The test is done to detect any changes in the retina, in my case, due to the use of Plaquenil. My understanding is that it's not months on this drug that can cause changes, but rather, years.

I was on plaquenil for three years the first time around, before my opthamalogist detected some changes and recommended that I stop using the drug. It's hard to know what exactly those changes were, and if they were indeed from plaquenil, but my rheumatologist and I didn't question it. The opthamalogist saw something he didn't like, so we stopped using the medication. A few years later, I started the medication again, and have been successfully taking it for the past seven years, with no retinal changes detected at all.

But, like the rest of you who take Plaquenil, I do what I need to do to take care of my eyes. I visit my opthamalogist every six months to a year for regular checkups, and to take a visual field test (which happens to be another non-favorite of mine). And for the past few years, I've been making annual visits to a specialized opthamalogist who administers the ERG.

The last time I was in, I asked the nurse to take a picture of the computer screen that was recording the visual of my eye during the test. I hope this doesn't freak you out. If you remember, I can hardly even look at pictures of my own rashes, but this doesn't bother me. Probably because it doesn't even look like my eye - but rather, a ship from outerspace!


When my eye looked like this, my eyes were propped open with something like a thick contact lens, although it felt more like a big old monocle to me. Here's exactly what was happening:

How an ERG is done: 

The patient assumes a comfortable position (lying down or sitting up). Usually the patient's eyes are dilated beforehand with standard dilating eye drops. Anesthetic drops are then placed in the eyes, causing them to become numb. The eyelids are then propped open with a speculum, and an electrode is gently placed on each eye with a device very similar to a contact lens. An additional electrode is placed on the skin to provide a ground for the very faint electrical signals produced by the retina.
During an ERG recording session, the patient watches a standardized light stimulus, and the resulting signal is interpreted in terms of its amplitude (voltage) and time course. The visual stimuli include flashes, called a flash ERG, and reversing checkerboard patterns, known as a pattern ERG.
The electrodes measure the electrical activity of the retina in response to light. The information that comes from each electrode is transmitted to a monitor where it is displayed as two types of waves, labeled the A waves and B waves.
The best news to come out of my test this year? They're very close to administering this test a different way! 
After we did this test with the monocle, I mean, contact lens, in my eye, the nurse administered the entire test a second time, this time merely taping a thin film over my eye.  No propping, no monocle, no discomfort!  My doctor is hopeful that by the next time I have the test done, they will have had enough data compiled (hence the reason I did the test twice) to determine that the thin film is just as effective as that big old contact lens. My fingers are seriously crossed. But it was exciting to be on the cusp of such technological advances in medicine!
Along those same lines, a frequent reader of my blog was kind enough to share another advancement in eye procedures - this time in regard to cataract surgery. You can read more about that here. Thanks, Jen, for sharing!

Below you can read a little bit more about an ERG. Enjoy!

What is electroretinography?

Electroretinography (ERG) is an eye test used to detect abnormal function of the retina (the light-detecting portion of the eye). Specifically, in this test, the light-sensitive cells of the eye, the rods and cones, and their connectingganglion cells in the retina are examined. During the test, an electrode is placed on the cornea (at the front of the eye) to measure the electrical responses to light of the cells that sense light in the retina at the back of the eye.

Why is an ERG done?

An ERG is useful in evaluating both inherited (hereditary) and acquired disorders of the retina (like plaquenil retinal toxicity). An ERG can also be useful in determining if retinal surgery or other types of ocular surgery such as cataract extraction might be useful.

Wednesday, June 11, 2014

Pillfold Lifestyle: The Sebastian


Add a cute white tee, and you have the perfect outfit for summer travel, complete with a stylish Pillbag! The Pillfold Sebastian, one of our most popular designs, provides a great way to carry your medication while away on that summer vacation. Slim, convenient, and cute - travel in style with a dose of style!

Monday, June 9, 2014

Promoting the eye mask - it does wonders!

Dream Essentials Snooz™ Airline Style Eye Mask
I am truly amazed at how much better I nap when I'm wearing an eye mask. It's as though I'm able to enter the deepest sleep possible within minutes of falling asleep, maximizing the two hours I allow each day to nap. Add with the satin pillowcase I blogged about a few days back, and I'm now sleeping better than ever.

Because my naps have been so darn good, particularly with the use of an eye mask, I decided to do a little research on why blocking out light yields such a good sleeping experience. Turns out there are websites galore that explain our sleeping patterns, the factors that impact our sleep, and specifically, how light affects how much rest we get. The links to two of the more informative sites are here and here - but I'll share a few snippets below:

HOW LIGHT AFFECTS SLEEP:

Sunlight detected by cells in the retina of the eye sends messages to the brain that keep us in a roughly 24-hour pattern. These light cues trigger all kinds of chemical events in the body, causing changes in our physiology and behavior. For example, as evening approaches and the light in our environment dwindles, the hormone melatonin begins to rise and body temperature falls—both of which help us to become less alert and more likely to welcome sleep. With the help of morning light, melatonin levels are low, body temperature begins to rise, and other chemical shifts, such as an uptick in the activating hormone cortisol, occur to help us feel alert and ready for the day.

SLEEP DRIVE: 

Scientists refer to sleep drive as a homeostatic system. Like body temperature or blood sugar, sleep is regulated internally. For instance, when body temperature falls, blood vessels constrict and we shiver; when blood sugar levels rise, the pancreas secretes insulin; and when we remain awake for an extended period of time, structures in the brain promote sleep. Furthermore, the duration and depth of our sleep vary according to the quantity and quality of sleep obtained previously. With every waking hour there is a strengthening of the homeostatic sleep drive. This strengthening isn’t directly measurable as a quantity, but experts think that it is the result of the level of brain activity during wakefulness. One hypothesis suggests that the build-up in the brain of adenosine, a by-product of energy consumption by cells, promotes sleep drive. The fact that both adenosine and sleep drive increase during wakefulness and dissipate during sleep suggests a possible link between the two.

IMMUNE FUNCTION:
 --It is natural for people to go to bed when they are sick. Substances produced by the immune system to help fight infection also cause fatigue. One theory proposes that the immune system evolved "sleepiness inducing factors" because inactivity and sleep provided an advantage: those who slept more when faced with an infection were better able to fight that infection than those who slept less. In fact, research in animals suggests that those animals who obtain more deep sleep following experimental challenge by microbial infection have a better chance of survival.

If you're considering an eye mask to maximize your nap and/or nighttime sleep, here's the good news: it won't break the bank. The eye mask pictured above runs $2.95, and you can find one on Amazon for $2.56. I can't vouch for how "good" these masks are, but based upon the fact that I use a mask that I received free from an airline on an overnight flight, I think just about any one will do.

Personal note: If you choose to use an eye mask in the middle of the day, I do recommend allowing your eyes to become slowly accustomed to the light at the conclusion of your nap. You won't believe how sensitive your eyes are after you've been wearing a mask! Particularly on a sunny afternoon, don't immediately take off the mask and open your eyes. Instead, remove the mask, but keep your eyes shut for another minute or two while they adjust to the light filtering through your eyelids. I know it sounds like a simple thing - but believe me, when you open your eyes too quickly after using the mask, it doesn't feel so great!

Interestingly, I just attended the LFA DMV Virginia Summit this past weekend in Richmond, and I caught the tail end of a great talk about Memory and Lupus Fog, given by Dr. Aarat Patel. He mentioned two books about sleep - one, simply called, "Sleep", and another called "Lights Out!". I think both books talk a lot about this concept of light and how it affects our sleep. Happy reading, and happy napping!

Wednesday, June 4, 2014

Choosing wisely: putting our lupus needs first.

Several weeks ago, I found myself feeling a bit faint during Sunday mass. It was no surprise - it was Palm Sunday (the Sunday before Easter), and the gospel reading (during which you stand) is traditionally longer than normal. (This happens every year, by the way, so this longer reading came as no surprise!)

When I started to notice my light-headedness, my first reaction was to just deal with it. Everyone else in the church probably felt the same way I did, so I told myself to just hang in there. I waited another minute or two, and noticed that the feeling wasn't getting any better. So then I told myself that I couldn't possibly sit down, because what would everyone around me think? I looked like a healthy, active mom - why should I get to sit down while everyone else was toughing it out? Just stand there, I told myself, grip the pew a little harder, and concentrate on the words of the reading.

And then I wised up.

I realized I wasn't even capable of focusing on the gospel because I was too busy trying not to be light headed. And I was so worried about what everyone else would think about my actions, I wasn't considering what the best action was for me to take. Right then, I had fallen into the same trap I had so many times before with lupus.

I used to expend so much energy trying to keep up appearances. Acting like everything was okay, and pretending that lupus wasn't affecting me left me no energy to actually make good decisions, take care of myself, or enjoy life at all. Instead of successfully living within the boundaries of the disease, I was struggling to defiantly live without any accommodations at all. And we all know how very ineffective that turned out to be!

So realizing that my energy was being misdirected, I re-evaluated. With a clear and level head, I realized I should just sit down. I needed to be present and accountable - for the girls (who were being unbelievably good during the reading), for the words of the gospel, and for the rest of the day. So if sitting down allowed me to return to a normal state of being, then that's what I needed to do.

So I sat. And the light-headedness immediately went away. And I felt normal once again.

And if you can believe it, within three minutes of me sitting down, an older gentleman a few pews in front of us fell to the floor. He'd fainted. Immediately the mass was stopped, the priest and other medical professionals in the congregation ran over, and an ambulance was called. As I sat in the church, saying a few prayers while the entire congregation waited patiently for the EMT's to arrive, I reflected on my decision to sit down.

And I decided that I'd chosen wisely.

So the next time you're worried about doing something to accommodate for your illness: taking sick leave from work, carving out time to take a nap, asking for help when you're out and about, passing on a hand shake or a hug because your joints are aching, or taking a rain check on an outing because you're not up to it - feel free to use this story as a reason for your actions. I'm happy to take the heat for your decision to take care of yourself.

And I guarantee you'll have chosen wisely.