Friday, August 1, 2014

Lupus treatment: Being open to change


My daughter Deirdre is five going on 15. She is a precocious little lady - and makes me earn my parenting badge on a weekly basis.

Of course, I love her dearly, and appreciate the challenge of staying one (or three) steps ahead of her. Though, some weeks, it's not easy.

Recently, I've found the need to switch up my parenting tactics all too frequently. Whether it's reminding her to be kind, empowering her to make good decisions (particularly before she makes a bad one), or helping her work through her frustration, I found my strategies one week aren't necessarily going to work the next. I remember this being the case when she was in her two's and three's, too - although today, there's a lot more sassiness to deal with. (Where DOES that come from?)

The good news is that despite the continuous need to tweak my tactics, I can see progress being made. As opposed to her three-year-old self, I can see how the strategies from one week build to the next. If, in week one, she screams, yells, and stomps off because she's been asked to do "X", the following week, she employs the response tactics she learned the previous week ("think before you react, take a deep breath"), and there's no screaming or yelling - just a little stomping. In place, even. It's not perfect, of course, but it is progress. And don't all parents love progress?

As I continue to craft new ways to help Deirdre help herself, I'm reminded that the way I treat my disease might have to change over time, too. As evidenced by my Fall 2013/Winter 2014 flare, the old stand-by of increasing my prednisone isn't always going to work - and I need to be a little quicker to accept that fact. My doctor even suggested that we switch tactics after a few months, but I was a hold-out. Increasing my dose of steroids had worked early on in the flare - shouldn't it just work again? Shouldn't we just keep trying? Can't we just make it work?

Of course, I finally came around, realizing that my treatment DID need to change, and I'm happy and healthy now that Cellcept has been added to my medication regimen. (My pillfold was happy to have a newbie in the group, too!)

You can read about my desire to stick with prednisone here. While I know it was an important part of my journey, I'd like to think that I'll capitulate a wee bit earlier next time and start the stronger medication sooner. I know that my winter could have been a heck of a lot less painful had I done so.

So just as Deirdre will continue to build on her interpersonal skills, I will continue to hone my treatment-discerning skills. I welcome the chance to work side by side this cutie pie.  Wouldn't you?

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!