Friday, June 24, 2016

Lupus fatigue - hitting the wall means no decision making for me!

Lupus fatigue. It can be one of the most disruptive and debilitating symptoms of the disease. When I approach my daily wall of exhaustion, typically between 1:30 and 2pm every afternoon, several things happen. One, I start yawning. Two, my eyesight starts to get blurry, and my eyes itch. Three, I struggle to articulate my thoughts, and have trouble finishing my sentences. Four, I lose track of what I'm doing (like, "I have a spatula in my hand, but what was I doing with it??") And five, I become very quiet, probably because I'm struggling to put thoughts together. For my family, my sudden, atypical silence is the primary signifier that I am fading quickly.

Because I've suffered from daily lupus fatigue for many years, I try to preempt this level of exhaustion with a daily two hour afternoon nap. Hitting the wall is a very unsettling feeling, and I avoid it at all costs. It's one thing if you've been up all night, or had a brutally taxing morning on which you can blame your fatigue. But most lupus patients would agree that the debilitating, immobilizing fatigue one feels on a daily basis is brought on by no such circumstance. It's simply lupus - where an overactive immune system causes inflammation or pain throughout the body, or another side-effects of the disease, that the body then responds to with ovewhelming fatigue. 

When I do hit this wall of fatigue - I know I'm incapable of doing several things:

Carrying on a conversation (just ask my husband)
Driving a vehicle
Negotiating anything (just ask my daughters)
Eating (because I'd rather just sleep)
Working, exercising, or exerting any significant level of energy, because physically, I can barely hold myself upright.

When I'm healthy, I can successfully manage the fatigue with my nap, as mentioned above. When I'm in a flare, or feel one coming on, I often feel overwhelming fatigue several times a day, and have to adjust my schedule to accommodate multiple rest times in the morning and afternoon.

But sometimes, like one day last week, I make poor choices throughout the day, and find myself crashing around 6 or 7pm.

I'll tell you more about the mistakes made throughout that day in an upcoming post - my lupus missteps always make for such great posts, don't they? But suffice it to say that by 7pm, I found myself drained of energy. We'd spent several hours prior at the pool, and as we finished up our evening poolside, I found that I was avoiding conversation, rubbing my eyes, and making very little sense when asked direct questions. All signs that I'd overstayed my welcome.

But in an effort to right one of my wrongs from earlier in the day (not eating enough), I thought grabbing a bite would rejuvenate me.  I hadn't hit the wall yet...and hoped that I could turn things around. Thinking I could handle the menial, routine task of ordering dinner, I went over to the poolside grill, and placed my order: a super food salad whose main ingredient is spinach.

Anyone want to take a guess as to who here is allergic to fresh spinach? Me!!!

And that's when I realized there's yet another thing with which I have difficulty when I'm approaching the wall: making a decision.

I've never ordered that salad before, and never will again (at least as long as I have an allergy.) But because I was tired, and because my thoughts were incoherent, I ordered something I could barely eat. Looking back, I think the acai yogurt dressing sounded appealing, as did the candied walnuts. But when I'm too tired to think, I'm not able to sort out impulse from rational thought, or whatever you want to call it.

Salad aside, the evening did not take a nose dive. Johnny drove us home once he witnessed the spinach incident (I wasn't really interested in eating anyway - see itemized list above), and he helped put the kids to bed, so I was able to get the good night's sleep I desperately needed.

But that dining experience, as insignificant as it may seem, explains so many instances over the years where I've flaked on decision making at various times throughout the day. Be it ordering food, choosing a movie, or voicing my opinion, I used to berate myself for my poor choices. But this was a good reminder that when I'm tired, I need to delegate the decision-making to a responsible party. I'm so thankful Johnny (and the girls, my sister, etc.etc,) are usually up to the task.  (After the fact, my sweet husband said that he would have gladly ordered for me, had he known how tired I was. I'm sure his choice would have hit the spot!)

You can read about other posts regarding lupus fatigue here. Know that you're not alone in your exhaustion!

Friday, June 17, 2016

The Pillbags have another online home -!

I'm pleased to announce that the pillbags are now available at QuinnEssentials, an adorable online paperie and boutique gift store started by a friend of mine from my old college days. She has great taste, and her style carries over to the unique gifts and small goods she's handpicked for her store. I'm totally in love with the mini heart zippered tote below, and the cupcake candle could be ordered in multiples to keep on hand for that last minute birthday gift (say I'm not the only one...). I could also go for one of everything from her Essentials Spa collection.

I am thrilled that she's included the Pillbags in her collection. You can check them out here, but be sure to browse the site so you don't miss any of her essential goodies! 

Thursday, June 16, 2016

Long Beach Pillfold oozes sophistication and style in latest photo shoot.

Fun with the Long Beach Pillfold.  Roomier inside for more pills. Still compact to be stylish. Thanks, GG, for the prop!

Monday, June 13, 2016

Travel and Leisure this summer? Take a pillfold along!

And don't forget Dad while you're at it!
#bestdad #besthusband 

Thursday, June 9, 2016

Type A and Lupus: I've always said there was an uncanny connection!

Take a moment to read this great article in Good Housekeeping  about a woman who recounts her diagnosis with lupus.

She says she was a type A personality being diagnosed with a type A disease. Sound familiar?? I thought so, too!


Wednesday, June 8, 2016

Health Listed's 2016 Top Lupus Blogs. Thank you!

Many thanks to Health Listed for including Despite Lupus in their list of top lupus blogs for 2016! I'm thrilled to be included, and appreciate the nomination. And thanks to Margy at the Lupus Research Institute for your support!

As evidenced by Health Listed's fine list of other lupus bloggers, there can never be enough positive, constructive chatter about this disease on the internet. So glad to be part of the conversation!

Tuesday, June 7, 2016

Starting a new lupus drug: How to decide

Here's a question I often hear from lupus patients. In fact, it's a question I had to ask myself many years ago when my doctor suggested I start Cellcept for the first time:

"My doctor wants me to start a new medication,  but I'm nervous about the side effects, and worry that it won't work. How do I decide what to do?"

Good question! Starting a new medication can be tricky. You read the pamphlets, and do research online, but ultimately you must make the decision that's right for you. Even my doctor says, "The patient must decide." So here are some guidelines to help you through the decision making process, three strategies that I have used multiple times when faced with a tough decision to start a new medication: 

1) Discuss your concerns openly with your doctor.

He or she may be able to clarify the literature, dispel some misunderstandings, or explain what ".01% chance" REALLY means. I remember reading the long list of side effects for CellCept years ago, and being completely overwhelmed, particularly at the mention of "an increased risk of developing lymphoma". So I brought it up to my doctor, explaining that it was a real sticking point in making my decision. We thoroughly discussed the subject, and I was able to make a much more informed decision, based on the additional components he provided. That's the goal - you need to have the right information to make the right decision for you, and your doctor is often the person to provide it.  

2)   Consider the benefits, and weigh them against the risks.

If the doctor is recommending a change to your medication regimen, it's probably because your current cocktail of drugs isn't working. The goal for any lupus patient is to keep one's disease activity managed and under control. Thus, you have to weigh the benefit of controlling a flare with the new drug against the unfavorable side effects of that new drug. You might find more damage is actually being done by not starting the med, and letting your disease run amuck. 

3) Determine the source of your fear.

When you worry about starting the new drug, try to pinpoint your concerns. Are you scared it won't work? Are you worried that you'll never get off of it if it does? Or is it change itself? All of these are issues I've personally grappled with over the years. In fact, I often felt that lupus was such an unpredictable disease to begin with, it felt counter intuitive to introduce yet another "unknown" into the equation. But consider this - if you never try the drug, you'll never know if it works for you, and it will remain an unknown.  So you're still putting yourself at a disadvantage! Also keep in mind that no change has to be permanent. You can explain your long-term concerns to your doctor, and maybe the two of you can come up with a game plan to assess and re-assess the drug's efficacy. (But if it works, I imagine you'll never look back!) 

You can read about my deliberations about starting CellCept here, and you can read about more strategies on how to make good, healthy decisions here. Also note that just because you (or your doctor) pass on a medication the first time around, it doesn't mean that same drug can't be a consideration in the future. Keep an open mind, and hopefully your doctor will, too!