Wednesday, July 30, 2014

The way a prednisone taper is SUPPOSED to work.

Mention the phrase "taper off prednsione", and my body instantly tenses up. I know I've written about my attempts (some failed, some successful) to taper off steroids in the past, but I thought I'd tell you about my most recent experience. Primarily, because it's been so gloriously uneventful.

You can read about my trials with prednisone tapers here, but I'll summarize by saying most of the time, they don't go well. It's an arduous task, to taper off those magic little pills. And I'd rather do just about anything than start a steroid taper. They all have the potential to be long, painful, and oh-so-difficult. They can conjure up a whole host of questions,too: Is this steroid-withdrawal or am I getting sick? Am I tapering too fast? Am I tapering too slowly? Will I ever feel as good as I did on that previous dose? Will I ignite a flare by tapering? How soon will my moonface/insomnia/acne/weight gain/irritability/hyperactivity go away?

During my most recent experience over the winter, I'd often go two weeks before a lower dose of prednisone kicked in. Until I hit that two week mark, I'd wake up every morning in pain. The pain (and tears and frustration) would often last until mid afternoon. Those were some pretty rough weeks of tapering, I promise you.

But my recent experience hasn't been difficult at all. It hasn't conjured up any feelings of frustration, and hasn't caused me to question myself at every turn. What a refreshing change!

I started tapering in the Spring, reducing my prednisone by 2.5 mg every two months. And while 2.5mg may not sound like much, when you're tapering, I say every milligram counts! The only indicator I've had that I'm even tapering has been a little extra fatigue for about 3 days after I make the reduction. When I say fatigue, I don't mean like debilitating, lupus fatigue, when you feel like you need a constant nap, and even when you do nap, you can still wake up tired. I mean the kind of fatigue where it feels like you went to bed a little late, or woke up a little early the next morning. Fatigue when you feel just a wee bit run down, and you think, "I must not be going to bed early enough." That minor, almost insignificant tiredness lasts, as I said, for about 3 days, and then it's gone. Just long enough for me to say, "Wait a minute. I did just cut out 2.5mg of prednisone. Is THAT what I'm feeling?"

So here's to a very successful and pain free summer of tapering off prednisone. I'm down to 5mg one day, and 2.5mg the next, just 2.5mg shy of where I was at this time last summer, before my symptom activity ramped up. Of course, I do have 2000 mg of Cellcept in my corner, which my doctor confirmed that I'll be continuing for awhile. A prospect with which I'm quite happy. When you're pain free, doesn't everything sound a little bit better?!

Wednesday, July 23, 2014

Mid-summer stock is here: the Pillbags are in full force!

I'm happy to announce that my mid-summer inventory has arrived, putting the popular Amelia and Bordeaux Pillfolds back on the shelves. Hooray!

You can also find the limited edition Peabody Pillpouch back in stock. The Peabody flew off the shelves last Spring, and I'm just restocking them now. Snap up a little whimsical birdie pouch before they're gone!

Monday, July 21, 2014

Sticking with the minis: Hair clips to the rescue!

These little guys have been lifesavers over the past few months!

As strands continue to fall from my head, I've been trying to style my hair as little as possible. That's where these baby clips work wonders. I just gently pull back a little hair from each side, secure with a clip, and I'm done.

You can see from the second picture how I've "graduated" to these less-than-dime-size clips. But I won't complain. One day, I'm sure my hair will return en masse, and I'll be searching the house for the bigger clips you see here.

Until then, I'll stick with my minis!

Always looking to learn something new about my lupus hair loss and its causes, I decided to consult my newest (and perhaps, greatest) lupus resource, The Lupus Encyclopedia, by Dr. Donald Thomas. This book is fabulous, and should be your go-to book for anything and everything you want to know about lupus. Look for my review of the book to come in the next few weeks, but know that I went to the index, looked up "hair loss", flipped to the pages listed, and learned exactly what I wanted to know. It's extremely easy to navigate the 900-page book - I love having the answers to all of my lupus questions in one comprehensive book!

Wednesday, July 16, 2014

Upcoming Fibromyalgia Seminar: In Lombard, Illinois? I hope you can make it!


National logo

Would you like to learn more about managing fibromyalgia? Attend a free “Get Educated” presentation on: “Why I Hurt: The Truth Behind Fibromyalgia" at the NUHS Whole Health Center - Lombard. 

When: Monday July 28th at 7:00pm

    200 E Roosevelt Rd 
    Lombard, IL 60148   

    Building B, Room 539 

Fibromyalgia is more than just a sentence to a life of chronic pain. There may be innovative and natural ways to manage your fibromyalgia that you haven’t considered.

New information shows that 40-60% of patients with fibromyalgia may have some component of vitamin D deficiency. Also, 81% of fibromyalgia patients report irregular bowel habits. These and other findings show that lifestyle and nutritional interventions may help in many cases. It's difficult to diagnose and difficult to treat, but those who suffer from fibromyalgia can find relief and even recovery through correct diagnosis and intervention. If you can, stop by the seminar to find out more! 

Monday, July 14, 2014

Looking worn and in need of a pick-me-up? The Lovely Blog to the rescue!

Chalk it up to the big birthday I had last month, or this latest bout of hair loss, but my skin has been feeling old. And looking old. And I was in need of a pickup.

So when I was at the spa last month, I booked a facial. I couldn't wait to get in a room with an esthetician who could answer all of my burning questions:  Why did my skin all of a sudden stop cooperating? What about the redness around my cheeks? The uneven skin tone? The age spots? The dark circles? I mentioned that three years ago, I didn't seem to have any trouble with my skin. I've never worn foundation, or concealer, or much of anything except moisturizer, eye makeup, blush and a little gloss. So why, all of a sudden, do I feel like my face needs an overhaul? (Don't worry - I don't think I'm beyond help - this was just my one chance to talk to someone who really knew skin care. I didn't want to mince words!)

Boy, did I have the right consultant! She was patient, and extremely knowledgeable. She answered every single one of my questions. Better yet, she gave me solutions and a game plan. She had products galore for me to try - and she explained the use and purpose of everything she used. She even threw in some samples, and described the ingredients of what she had used, so I could figure out how to replicate things at home. It was a great appointment, and I walked out feeling and looking fabulous. An hour with her was like taking off those three years...instantly! My face felt fresh, plump (which is a good thing for an aging face), and I really felt like I had the tools to start "repairing my barrier" as she called it. I could see could good skin in my future once again.

While she had products that I could have purchased at the time (of course), I decided to take the samples home, and see what worked and what didn't. I did have some homework to do - because some of the issues I brought up had over-the-counter solutions, which was great. Her starting point: find a new moisturizer. One with a higher SPF than my usual 15. One that was more age-appropriate. And maybe one with a tint.  (Her first suggestion was to start exfoliating, actually. The second was the moisturizer. Just so you know.)

Since I'm not that savvy when it comes to skin care and make up, I went to the one person I know who is, and that's Lauren Snow. Lauren was kind enough to feature the Pillbags on her beauty blog awhile back, and when her e-newsletter showed up in my inbox a few days after my spa visit, I knew just where to go. The Lovely Blog by Lauren Snow!

It took me no time at all to scroll through her posts and find recommendations for the products I was looking for. She even has step by step photos to take all the mystery out of the application process. She describes how, when, where, and why - and I love it! It's just what I needed.

Based upon my consultation and the blog recommendations, I now have just a few new products that are helping to brighten my look and improve my skin. And I didn't need to dip into my Pillbag savings to do it. Just a few products can make all the difference. Hooray for skin care (and cover-up!)

This pick me up really came at the perfect time. With my hair continuing to thin by the day, I've really needed a distraction, and a way to freshen up my look. Thus, my latest hair loss tip has emerged: Want to freshen up your look because your locks are looking limp? Move the focus from your head to your face by trying a new product or two. Maybe it's a new lip color, or a new mascara. Or maybe you can try a new eye cream. At least you'll feel like you're doing something to brighten your look, even if the hairs on your head aren't cooperating!

Friday, July 11, 2014

The instinct to "do" - a lupus liability for sure.

It's hard to teach this old dog new tricks. Or rather, it's hard to keep a "doer" from doing.

A few weeks ago, I had a case of poison ivy. It wasn't awful, but it was bad enough that I needed to treat it repeatedly with Zanfel, my favorite p.i. wash. I used it several days in a row - and to effectively use the wash, you have to wet your hands slightly, rub a small amount of Zanfel vigorously between your hands to activate the ingredient, and then rub vigorously on the affected area for 30 seconds or more. I had it on both legs, my torso, and a couple of spots on my arm - so I had some serious rubbing to do. I didn't notice any pain in my wrists or finger joints as I was applying the Zanfel (I was too focused on the relief of the pain and itching!), but after a few days of using the Zanfel, my wrists were definitely sore. I'd given them a real work out.

On one of the last days I used the Zanfel, I was determined to get rid of the itching once and for all, and my joints didn't like my increased efforts. I woke up the next morning with significant pain in my wrist - most decidedly from my Zanfel exploits the night before. I started out my day trying to use it as little as possible, but quickly realized I needed to make my arm inaccessible in order to resist the urge to use it. So I put on a light jacket with pockets so I could keep my injured wrist in the pocket while I went about my day. I set up the girls with breakfast, did some light dishes, and organized some paperwork easily with one hand. My resting efforts were a success - and within 45 minutes or so, I noticed the pain was diminishing.

I continued with my morning, tidying up the kitchen and checking email, being mindful of my pocketed hand the whole time. Just then, Darwin scratched at the door to go outside. I let him out, but remembered that I'd wanted to check around the yard to see where that nasty P.I. was coming from. (There are two spots along Darwin's yard path where P.I. typically re-grows each summer, so I wanted to see if those were, in fact, the sources of the P.I.) I followed Dar outside, with hand in pocket, just planning on browsing the yard to check for the plants. Sure enough, I found a tiny little three leaved P.I. plant right in the middle of Darwin's step off the back patio. Continuing with my hand in my pocket, I decided to check around the yard for the other possible spots, and I saw three more plants that were all in Darwin's high traffic areas.  Once I spied the culprits, I knew I couldn't leave them there. I grabbed a pair of clippers from the garage, forgot all about my hand, and began to clip away at the P.I., being sure not to come in contact with the P.I. (I've gotten pretty good at removing a P.I. plant here and there!)

As I was finishing up the third spot, all the while rejoicing in my accomplishment, and with plans to start checking the perimeter of the yard for other P.I. spots, I stopped and realized what I was doing. Just moments ago, I'd been inside, nursing my wrist because it was in pain. Now, here I was outside, with a pair of over-sized hedge clippers in hand, doing yard work. What was I thinking?

For those of you who tend to "do", you know exactly what I was thinking. My instincts kicked in, and I thought of nothing except the task at hand. There was a job to be done, and I was naturally going to tackle it. The thought of letting that task fall to someone else, or even worse, putting it off until later in the day is one that didn't even occur to me. Actually, maybe it DID occur to me, but it probably seemed like such a ridiculous notion that I automatically dismissed it. I can't be sure - but what I am sure about is that I went from nursing my hand to neglecting it pretty quickly.

Once I realized my folly, I put down the clippers. The other P.I. spots would just have to wait. I went back inside, washed up, and returned my hand to its proper place in my pocket for the rest of the morning. I made sure I stayed away from any taxing, two handed to-do's, tempting myself as little as possible. But oh, did I envision the possibilities!

As I looked out onto our backyard, admiring my handiwork (even if it was deemed a poor decision on my part), I decided that this P.I. incident was a good reminder to not let this kind of thing happen on a grander scale. I can think of many times in the past when I've been swept up by tasks or to-do lists - unintentionally putting my health at risk, but not being aware enough to stop before it was too late. Thankfully, I've made some progress in my time with lupus. Not enough to forgo the clippers completely, of course...but I think every little step in the right direction counts!  

Wednesday, July 9, 2014

Gauging the success of my lupus nap: Letting the numbers talk.

If you can believe it, I've been taking almost a 2-hour nap every afternoon for the past 11 years. It's become a part of my daily routine that I cannot, will not, and do not bypass. Too much good has come from napping - which you can read about here. Of course, every once in awhile, I have a moment of wishful thinking where I longingly say to myself, "I bet by this time next year, I'll be healthy enough not to nap every day." But that day never seems to come. I get tired every day, so I nap every day. And for me, that's okay. I've realized whether or not I need a nap isn't an indication of how healthy I am. In fact, if I'm healthy because I take a nap, so be it. I have no intention of messing with something that works!

My nap began after a stint in the hospital in August of 2003. My doctor admitted me to the hospital, where I was diagnosed with lupus-induced pancreatitis, severe anemia, and internal bleeding. I went on to have a series of blood transfusions, a slew of exploratory procedures, and was put on a clear liquid diet for several days. In the end, I was in the hospital for a total of 7 days. My doctor told me it was a pretty close call, and after I was discharged, I knew I wanted to eliminate those close calls as much as possible. So I started making changes to my lifestyle, one of which was adding a nap to my day. Even before I was admitted to the hospital, I'd talked to my supervisor and HR director about an alternative work schedule, requesting a shorter work day in order to get home and nap before my debilitating fatigue hit. We agreed that I could work 9-3pm, four days a week (instead of until 6pm), and work 1 day from home, all in an effort to fit in that nap. From that moment on, I never returned to full time employment, and I never missed a nap. At least, almost never.

And while I no longer question the necessity or value of my nap, I don't think I've actually quantified the benefit of my nap before...until just a few weeks ago. It was the day I went to the spa with my sister, which I blogged about last week. As I was completing the necessary health history paperwork prior to any spa service, I went down the list of questions, answering as I always do: yes to arthritis, yes to joint swelling, yes to kidney problems, heart problems, breathing issues, etc., etc. (Note: I used to get a bit unnerved by health-history paperwork - you can read about the ordeal of filling out my flu shot paperwork here - but I've learned to try and take it in stride. After all, with all of the "x"'s I put down, the fact that I'm still alive and kicking is a blessing in itself!)

As I completed the health paperwork, I came across a question I don't think I've ever seen on a spa form. The question was this:

"How are you feeling right now, on a scale of 1 to 10, 10 being the best?"

And it took me a moment to assess: I was really tired, my joints were a little swollen, and I didn't know if or when I was going to get a nap. So truthfully, at that very moment, sitting there with an overdue nap weighing on me, I wasn't feeling too hot. I was at about a 6. And a half. At best. So that's what I put down. And I was quite surprised that I actually felt that crummy.

I finished the paperwork, handed it off to the associate, and promptly found my way to my napping room, where I slept soundly for over 90 minutes.

After I finished my nap, I rejoined my sister, relaxing in the "serenity room" with hot tea, delicious snacks, comfy lounge chairs, and soothing music. As I sat there, enjoying my tea and snacks, fully rested and looking forward to my treatment, I realized I was no longer a 6.5. I was up to a 9.5, just like that.

All it took was a nap. My swelling was all but gone. My exhaustion was gone. My anxiety was gone. And I felt fabulous!

Since then, I've made a mental note every couple days of how I feel just before I nap, and just after I nap, and it's a remarkable difference. Some days, I actually don't feel too bad at the start of my nap. But inevitably, when I wake up, I feel a whole lot better.

So if there was any doubt before, there's no doubt now. My napping ritual is a success. And now I have the numbers to prove it!

Wednesday, July 2, 2014

Napping on the road makes for a great day, despite lupus!

About a week ago, my sister whisked me away for a day at the spa for my birthday. It was fabulous! We relaxed, we spa'ed, and we ate great food. And we'd do it again tomorrow if we could!

Planning the spa day took some forethought, and I appreciate that my sister was up to the challenge. The spa we wanted to go to was 90 minutes away. We knew we wanted at least 3 hours at the spa, on top of the 3 hours of driving time. So if we needed a total of at least 6 hours, hours that didn't conflict with my nap, we had some finagaling to do. We had a couple of options - leave early in the morning and get back by 2pmish for my nap; leave around 4pm after my nap and come back late in the evening; or drive out to the spa in time for me to take a nap, figuring out some way to take my nap on the spa premises. After my sister made a series of phone calls (how cool is she!), we determined that I'd probably be able to make something work at the spa. It was connected to a hotel for one thing, and if you think about it, a spa is made up a series of intimate, relaxing treatment rooms, all with dimmed lights and soothing music. While the spa couldn't guarantee me one of those rooms, they were willing to try and make something work. They even suggested the small library attached to the hotel. They were really putting their thinking caps on! 

We drove out to the spa on one of the loveliest summer days of the year, and we arrived a little after 2pm. Upon check in, my sister mentioned the nap request we'd made over the phone, and the spa associate got to work on a solution. As I was finishing up my paperwork, she told us that I was all set - I could have a room until 4pm. Yippee!! 

I gathered up my things, and headed back to my napping room. I didn't even change into spa attire (i.e. robe and slippers), because I wasn't sure exactly what I was headed for. I didn't know if it would be a storage room, or an infrequently used room, or a just-used room that had been stripped down. In fact, I grabbed a towel on my through the spa just in case I needed something to drape over me while I slept. 

We wound our way through the treatment rooms, and I arrived at my napping quarters - a treatment room just made up for me! The sheets were turned on, the bed was heated, and the lights were dimmed. We muted the music, and the associate left me to sleep for more than an hour and a half. Plenty of time to rest up for spa day! 

When I awoke a few minutes before 4pm, I was rested and relaxed. I rejoined my sister, who had been swimming and sunning and dozing in the various relaxation areas of the spa, and we continued with our afternoon. I was able to enjoy the amenitites of the spa, along with my treatment rested and without any fatigue at all. It was glorious! We finished up the evening on the veranda outside of the wine bar, dining on a delicious cheese plate (my favorite) and other savories. Katie drove us back and we arrived home before 10pm, just in time for bed. I couldn't have had a better day. 

Had I skipped my nap, could have been a very difficult day. I'm so glad we did what we needed to do to make it work!