Friday, September 12, 2014

Book Review: "The Lupus Encyclopedia", by Dr. Donald E. Thomas Jr.

Since the LFA DMV's Annual Maryland Summit is tomorrow, I thought it would be a perfect time to share my glowing review of Dr. Donald Thomas' new book, “The Lupus Encyclopedia”. Dr. Thomas is a presenter at tomorrow's event, and if you're attending the summit, be sure to stop by and pick up a signed copy of his book. I plan on having him sign my copy - and I might even ask to snap a photo with the famous author, too!


Having known Dr. Thomas for several years, I had high expectations for his book. I knew it would be a thorough and accurate account of what lupus is, but I was hopeful that Dr. Thomas' all-encompassing goal of making life better for lupus patients would set this book apart from the rest. I’m thrilled to say that the book has exceeded my expectations, and Dr. Thomas has succeeded in publishing the ultimate lupus resource book. It is designed to educate, inform, and enlighten – and it gets the job done!

The Lupus Encyclopedia is a book that that every lupus patient should have in their home library. It's the most comprehensive lupus book out there, and is a valuable resource for anyone searching for a detailed and in-depth explanation of this complicated and mysterious disease.

The all-inclusive book runs over 900 pages, and offers a vivid account of the history, causes, symptoms, side effects, medications, treatments, and complications of the disease. Because of the breadth of information provided within the book, you actually begin to understand why lupus is so difficult to diagnose, treat, and manage. The Lupus Encyclopedia actually demystifies the disease in such a way that you, as a lupus patient, grasp just how complex your disease is. Your symptoms aren't crazy, abnormal, or figments of your imagination. You simply have a complicated, multi-layered disease called lupus. 

Here are three reasons why The Lupus Encyclopedia (TLE) is a valuable and much-needed resource:

1) TLE is easy to read: Even though the book runs 900 pages, it is organized into small, easy to digest sections. This subdivided format allows the reader to absorb two to three pages at a time, without becoming overwhelmed with information. At the end of each section, Dr. Thomas has included a handy, itemized list of the key points of each section, ultimately providing his own cliff notes to the text.

2) TLE is comprehensive: This will be your one-stop shop for all things lupus-related. Of course, it’s not a book that you read cover to cover. Rather, it’s a book that you consult and reference whenever you need a better, more complete understanding of the disease.  I even put TLE to the test. I had three specific, yet disparate lupus questions that I had lingering from a recent doctor’s appointment: what role does protein play in hair loss, is there a connection between gluten and auto-immune, and what are some joint-sparing adjustments that I can make in my daily routine? I looked to TLE, and within 15 minutes, I had my answers.  By consulting the detailed index, scanning the text, and perusing the key points at the end of each section, I quickly and efficiently found everything that I was looking for. It could have taken 30 - 45 min to track down that varied information online. And even then, I would have been bombarded with extraneous information that I didn’t need or want.


3) TLE is written by someone who cares: This is probably the driving factor behind the comprehensive, detailed nature of this book. It was written by a doctor who goes above and beyond in helping his patients become more educated and informed about their disease. In publishing this book, he’s allowed his passion for enabling patients to improve their lives with lupus to spread to the lupus community around the world. TLE includes practical advice and applicable coping strategies you don’t often hear from a doctor. As you read the text, and take note of the patient-directed inclusions on practically each page, it becomes clear that the author is knowledgeable, yet understanding. Direct, yet gentle. Dr. Thomas is just the kind of doctor we’d want to write a lupus book. I’m so glad he did! 

Wednesday, September 10, 2014

"Switching off" autoimmunity. Can you imagine the possibilities for lupus!?!

An exciting break though in the world of auto-immune diseases! I'm pleased to share the following articles with you - both sent to me by a couple of lupus friends. I was giddy each time I re-read them! A snippet of the first one is below, and you can read the second one here, which is a slight variation of the first. Either article will explain the exciting news that scientists have discovered how to switch off autoimmune diseases, although a lot of work lies ahead. Still, this is very, very promising!

"Scientists have made an important breakthrough in the fight against debilitating autoimmune diseases such as multiple sclerosis by revealing how to stop cells attacking healthy body tissue.
Rather than the body’s immune system destroying its own tissue by mistake, researchers at the University of Bristol have discovered how cells convert from being aggressive to actually protecting against disease.
The study, funded by the Wellcome Trust, is published today [03 September] in Nature Communications.
It’s hoped this latest insight will lead to the widespread use of antigen-specific immunotherapy as a treatment for many autoimmune disorders, including multiple sclerosis (MS), type 1 diabetes, Graves’ disease and systemic lupus erythematosus (SLE)."

Read the rest of the article here, and thanks, ladies, for sharing!

Friday, September 5, 2014

LFA DMV Lupus Summit in Baltimore, MD - Saturday, Sept 13th - don't miss it!

Looking forward to setting up shop at the upcoming LFA DMV Annual Maryland Summit on Saturday, Sept 13th! The Pillbags will be there - looking bright and cheery as usual, and I'll be there, anxious to catch up on the latest and greatest regarding research, treatment options, and symptom management techniques in the world of lupus. Hope you can make it, too!

I'll have signed copies of Despite Lupus available as well. I never have enough copies on hand for this event, but I'll be bringing a slew of books hot off the press. Feel free to stop by and flip through a copy!

Here are the details for the event on the 13th. Be sure to stop in.


27th Annual Maryland Lupus Summit

Join us for a comprehensive program that allows you to learn more about living with lupus and connect with members of the lupus community to learn about ways to enhace life with lupus.
Saturday, September 13
8:30 a.m. – 9:00 a.m. Registration and Coffee      
9:00 a.m. – 3:30 p.m. Summit
Location: John Hopkins University- Turner Auditorium
720 Rutland Avenue Baltimore, MD

Opening Plenary Session

Treatment Updates
Michelle Petri, MD, MPH 

A great deal is happening in lupus-related research. This presentation will update participants on recent research developments and their impact on those affected by lupus.  

General Sessions

Warm-Up with Tai Chi
Eric Johnson


Lupus 101
Rachel Kaiser, M.D., MPH
Have you been recently diagnosed with lupus or know someone who has? Perhaps you wonder if you're at risk or want a refresher on the basics of lupus, its symptoms and treatments. Dr. Kaiser covers the basic questions-- who, what, how. 

Lupus and Navigating the Disability Process
Tai Venuti, MPH, APR

Learn everything you need to know about applying for disability. 

Lupus and Men
Howard Hauptman, M.D.

Lupus is often portrayed as a woman's disease, but it is important to realize that ten percent of lupus patients are males and there is information and support available to help male patients better manage lupus.

Memory Problems in SLE: A Common but Treatable Problem
Donald Thomas Jr., MD, FACP, FACR, CCD

Many people with lupus describe confusion, fatigue, forgetfulness, distractibility and difficulty expressing their thoughts- what is referred as cognitive impairment. Learn more about how lupus can impact your brain, or cognitive functioning, and what treatment options are available.

Lupus and the Skin
Christine Dewitt, M.D.

Approximately two-thirds of people with lupus will develop some type of skin involvement.  Learn about the forms of skin lupus, treatments for cutaneous lupus and other skin problems that can occur when you have lupus.

Lupus and Your Eyes
Jonathan Solomon, M.D.

Many people living with lupus are concerned about eye damage caused from plaquenil toxicity.  Recent data reveals an increase of retinal toxicity among lupus patients being treated with high doses of plaquenil.

Designing a Lifestyle to Live Well with Lupus
Lorena Lues Wellness Group Trainer and Certified Holistic Health Coach

Maintaining a diet and exercise routine is difficult for anyone, especially while managing lupus symptoms.  Lorena will provide helpful ways to maintain a healthy lifestyle while managing your illness. 

Afternoon Warm-up Yoga
Lorena Lues Wellness Group Trainer and Certified Holistic Health Coach

Closing Plenary Session

Lupus and the Heart
Vikram Raya, M.D.

Lupus patients are at increased risk of experiencing cardiovascular complications at an earlier age than the general population. This session will address the importance of cardiovascular screening and what you need to know to live a heart-healthy lifestyle and reduce your risk of cardiovascular complications such as heart attacks and strokes in systemic lupus.

Vendors

The Summit features a variety of vendors that will be onsite throughout the day featuring products to enhance your health. (This is where I come in! See you there!) 

Wednesday, September 3, 2014

Lupus: knowledge is power; sleep is prodigious!

"If at first you don't succeed...maybe you shouldn't try again. At least not for awhile."

Remember how I was going to try a little mid-afternoon experiment last week, to see how flexible I could be with my afternoon nap? Well, it didn't go very well. Or rather, it went. But not the way I was hoping it would.

About a week ago, I made plans to drop off a gift to a friend at the unheard hour of 2pm. (Unheard of because I never, ever plan to do anything at 2pm. At two o'clock, I'm either on my way to nap, furiously finishing up the task at hand so I can nap, or half way to the land of nod already.) But this was the plan - schedule an errand so that it gently coincides with my nap, to see just how flexible I can be in managing my afternoon fatigue.

If all went as planned, I would run my errand from 2-3:30 pm, and the miraculous boost of energy I've been experiencing every few days would kick in. I'd feel alert and clear-headed for the duration of the errand, and would return to take a nap before my fatigue set in. My goal wasn't to cut out my nap completely. It was simply to see if I could conjure up that mysterious albeit appreciated dose of adrenaline that I've been feeling. Not just by happenstance, but rather, when I needed/wanted it.

So I tried my little experiment. I got to my errand at 2pm. I visited with my friend for a bit, yawning a time or two, but still enjoying myself because the fatigue hadn't hit yet. I excused myself at the planned departure time of 2:45pm, feeling decent, but slightly drained. That oh-so-familiar indication that the gas is just...about...to...run...out. As I pulled out of the parking garage, I knew I wasn't too tired to drive, so I headed for home. But halfway home, I hit a wall. Not THE wall that lupus patients talk about when referring to their debilitating fatigue. But a sufficient enough wall that I cranked up the hip hop music station on the radio, and rolled the windows down, so that I could remain alert for the rest of the ride. (Please note - in my life, I have pulled over many a time to rest when I was too fatigued to drive. Thankfully, this wasn't one of them. But, I'll admit, the fatigue was mounting fast!)

I pulled in the driveway, feeling that my experiment had failed. As I trudged upstairs, I couldn't help but feel dejected. Before today, I had had visions of me popping out of the car, and skipping up the stairs to my nap. A nap that was necessary, yes. But urgent, no.  But here I was, struggling to keep my eyes open as I felt the tug of my bed literally pull my body up the stairs.

I put all other thoughts out of my head for the time being, allowing myself to fall asleep quickly and enjoy the recharge that my body desperately needed.

And when I woke up, I realized I hadn't failed. Not at all. I had actually discovered just what I needed to - I that I cannot summon a boost of energy to appear when and where I want it to. I can't bank on the fact that I might feel refreshed every day until 3:30 pm. And I can't mess with lupus fatigue. So during the hours of 2-4pm, I need to plan on being home...to nap, or be very close to starting one.

So with this knowledge, Johnny and I can now officially schedule Deirdre's school year commute. I'll do drop off in the morning, and he and Bernadette will do pick up in the afternoon. That's just the way it needs to be. And since he's fine with it, I'm fine with it.

Knowing really is better than guessing. And trying it once is better than wondering for weeks. Who's to say I can't try again in a few months, or next semester? My Cellcept continues to work wonders, along with the rest of my magic little pills. Yesterday, for instance, I was able to comfortably put off my nap until 2:40pm. It gave Johnny a little bit more time to work, Bernadette a little bit more time to play with her mom, and me a little boost of encouragement that I really am getting better. Every moment that I don't get hit with debilitating fatigue, I feel like progress is being made.

As Johnny and Bernadette headed off to pick up Deirdre at school yesterday, off I went to take a nap. A much needed and respected nap. One that won't be going anywhere anytime soon!

Monday, August 25, 2014

Finding flexibility in a lupus lifestyle. How far can you go?

"To push, or not to push, that is the question."

At least, that seems like it's the question. I've been feeling absolutely, positively fabulous lately. No swelling, no extra fatigue, and no pain. Not even a pesky stray digit that flares up when I don't eat quite right, or get enough sleep. Lupus has been as quiet as ever, and I'm completely thrilled about it!

In fact, I can even say that every few days, my afternoon naps don't seem quite as critical as they usually are. I still need one, that's for sure. But about twice a week, I a) don't feel fatigued until about 3:30pm, and b) I can get away with 90 minutes, instead of my regular 2 hours. I'm enjoying the flexibility - but I'm trying to figure how flexible I can actually be.

If you remember, this time last year marked the beginning of a flare - a long, nasty flare that had its ups and downs for almost eight months. It wasn't fun, and I have no intention of repeating that again.

But with the fall upon us, and Deirdre starting Kindergarten (eek!), we'll have a whole new routine in the Gorman household. Forget our leisurely 8-8:30am wake up calls. Now, we'll be getting up at 7am, to get Deirdre to school by 7:45am. She'll be in school until 3:10 pm most days, which will be an even bigger adjustment. We generally don't schedule ANYTHING between the hours of 2-4 pm (my sacred nap time), but now, we don't have a choice.

So the question is: can I push my nap everyday until 3:30pm in order to pick her up? Do we need to hire a babysitter after she comes home so I can nap? Will I actually have enough time to nap before she comes home, if Johnny and Bernadette pick her up?

These are the questions I've been considering, and I was having a tough time deciding what to do next. Johnny's on standby to do the pickup and help with Bernadette, but I really want to explore my options, if, in fact, I have some. Now that the Cellcept is working its magic, I don't want to assume that things have to stay the same.

So as I struggled with a plan of action, I considered how I would respond if a reader emailed me with this sort of question. And my answer would be something like this: Try it once. If it works, try it again. Just be sure to have a contingency plan in place for awhile, in the event that it doesn't work out so well. (It may work the first week you try it, but by week 2 or 3, the toll may start to become evident.) And don't get discouraged. Just because it doesn't work out completely, you may have discovered some other flexibility that you didn't know you had. And you can always try again in a few months.

So there. That's what I'm going to try. I'm not going to rearrange babysitting schedules yet, and I'm not going to commit to anything re: pickups. I'm going to run an experiment first, and see how it goes. I have a perfect opportunity for a mid-afternoon errand coming up, so I'll try it and will be sure to report back.

Whatever happens, I'm going to heed my own advice, advice that can be found in the Looking Within chapter of Despite Lupus. Here's the excerpt:

CONTROL THE ROLE

Imagine your life as one big theatrical performance (not too difficult, right?). You are, of course, the star of the show, and those close to you will be playing the requisite supporting roles. Now assign lupus a role in the production – that of stagehand. Lupus’ job is to be as inconspicuous as possible: to stay behind the scenes, disrupt nothing, and if movement is necessary, attempt to blend in with the scenery. You give this very special, important role to your disease, not because
you necessarily want it around, but because you know it’s not leaving anytime soon. Acknowledging that it’s a part of the play and giving it a job to handle will hopefully keep it busy and out of your way, allowing you to give your best all-time performance.

As you act out the scenes in your life, ask yourself the following: is what I’m about to do going to allow lupus to upstage me? Will my disease, who’s supposed to be waiting idly behind stage, have an opportunity to run across stage, leaping and bounding and causing a scene? For example, if you work extra late, or refuse to go to the doctor, will you be encouraging lupus to crash the scene? Keep these things in mind as you go about your daily performances and allow yourself to be the center-stager you’re meant to be!

Stay tuned to find out if my lupus is still eager to be center stage, or if she's willing to stay stage left for awhile. I'll let you know soon!

Friday, August 22, 2014

Your chance to support a great cause - VEDA t-shirts are calling your name!

Remember my friend Marissa over at Abledis.com? She did the fantastic 12-12-12 Project, asking me to participate as one of the featured project members. She did the 12-12-12 project in an effort to get a little perspective on her own chronic illness - a debilitating vestibular disorder that basically leaves her imbalanced/chronically dizzy all day long.

In an effort to raise awareness, she's recently teamed up with VEDA - the Vestibular Disorders Association - to offer a series of pretty swanky t-shirts to raise money for the cause.

100% of the proceeds go to VEDA - so don't miss this opportunity to raise awareness for another relatively unknown chronic disorder!

Here's the link to the t-shirts, and here's the one I'm getting! Love the blue!



CURE DIZZINESS: Adult Sizes

Monday, August 18, 2014

The Traveling Pillfold - Finding a soul mate at the zoo!

The girls and I traveled to Indiana last week to visit grandma and grandpa - and we decided to pay a visit to our furry friends at the Indianapolis Zoo while we were there. I had my Trocadero Pillfold along, and sought out the zebras to see how the design measured up. Looks pretty good to me!


Photo
        Deirdre and Bernadette holding down the entrance



Photo

Want to borrow my pillfold, Mr. Zebra?