Guest Blog: Climbing Kilimanjaro for Lupus Awareness

by Jody Gehrmann

Conrad and Jody Gehrmann

Staying physically active since my lupus diagnosis has been a challenge, but my husband Conrad and I try to take on as much as my body will allow. As you read this, we are getting ready to climb Mount Kilimanjaro, a dormant volcanic mountain in Tanzania and one of the highest peaks in the world! Conrad and I wanted to challenge ourselves physically and mentally in a creative way to raise both awareness and funds for lupus research.

Nearly 20 years ago, I started to get really, really sick and after some time and several doctors’ visits, I was diagnosed with lupus. Lupus has made it difficult for me to take part in the same activities I used to do years ago. I can be driving in the car feeling perfectly fine and then a 102-degree fever will strike. As many of you who are living with lupus know, we can often look healthy, but it often masks serious pain and illness. We often can’t do things many others take for granted.

Climbing Mount Kilimanjaro has been one of my childhood dreams and I am excited to have the chance to achieve it. I know there have been times over the course of my illness that I did not believe I would have the opportunity or be well enough to do this. Together, my husband and I trained hard to be in the best shape possible to prepare for this climb. Although this will be a challenge, it’s going to be very meaningful for both of us.

We have been long-time supporters of Lupus Foundation of America and our local Pacific Northwest Chapter in Seattle. Over the past several months, my husband and I have been educating our friends about the disease while asking them to pledge support directly to the Foundation to honor our climb. With the support of our friends and family, we have raised $50,000!

As we conquer the mountain, we hope you can match our efforts to conquer lupus. Please donate today and help the Foundation raise another $50,000 to find safe, tolerable and effective treatments for the 1.5 million Americans living with lupus.

The Importance of Minimizing the Communication Gap

by Joan T. Merrill, MD

Dr. Joan T. Merrill, Medical Director

Several years ago the Lupus Foundation of America collaborated with Lupus Europe and the biopharmaceutical company UCB on a survey of people with lupus. In the United States, 531 patients participated. Most (93%) were women, 86% were between 20–50 years old, more than half were married and almost as many had children. If you were to take a poll of patients in my clinic, this would pretty well describe them.

So how did 531 people with lupus think they were doing? 69.2% said that they have 3 or more flares each year. The most common problems reported included fatigue, arthritis, muscle pain and skin rashes. More than half of the participants reported depression. When asked about current medications, only 44% said that they were satisfied and 45% reported that their treatments impair daily activities or work.

But when I ask my patients how they are doing, most will say pretty well. Maybe they will report some symptoms, but will often blame the weather or stress, making it easy for me to assume that that nothing important happened. But in a busy clinic, that may be exactly what I want to believe. So most of the time, the medical visits with my patients are pleasant and fairly routine. And if you look at the medical literature, you are unlikely to see reports of more than one or two mild-moderate flares/year per patient.

Well, we know that the patients disagree about that. In fact, several studies of lupus have found that patients opinions on how they are doing are completely mismatched with those of the doctors. Doctors who work on clinical research express frustration that patients have trouble differentiating chronic damage or depression from lupus flares, and the disconnect between doctors and patients opinions is often attributed to this. But are we certain about who is making which mistake?

Most clinical trials in lupus find that only 40-50% of patients meet the cutoffs we (the doctors) set to define improvement. What do we think is happening to the other 50-60%? Are doctors missing lupus flares because we are not as good as we think we are at recognizing what is lupus and what is “other?” Another poll of patients with lupus was performed by the pharmaceutical company GlaxoSmithKline. This survey found a three way breakdown of communications, with patients minimizing their symptoms both to their doctors and their families. This can’t be helping the doctors to recognize flares. What can be done about this?

It might be difficult to make doctors listen better or to convince patients to risk the emotional discomfort of complaining. But what if there was an efficient written tool to accurately track symptoms and responses to treatments, both from the doctors and the patients perspectives? This might be set-up to clearly distinguish lupus problems from non-lupus problems and supplement information that is lost during intermittent, time-limited clinic visits. The Lupus Foundation of America is dedicated to solving the cruel mystery of lupus and developing tools for patients and doctors to improve communication. We welcome input about what you think and what type of tools would help ensure successful communication with your doctor. Leave your comment below with your ideas!

Guest Column: Back to School with Sodium Girl

Jessica Goldman

By Jessica Goldman

As a kid, August meant two things: rushing to finish my summer reading list (ugh) and back to school shopping (yes!). And when I say shopping, I don’t mean buying jeans or the coolest new light up high tops. I’m talking supplies: multi-colored pens, neon colored notebooks, crisp lined paper, maybe even a protractor and a calculator. Or three. Yes, I was a total nerd.

But now, as an adult, I realize my enthusiasm for back to school shopping resulted from more than a love for paper goods and writing utensils. It came from the delight in creativity (remember those colored pens?) and the commitment to have fun while making preparations for the year ahead.

Which brings me to this big point -- to live a full life with a chronic illness, at any age, requires a lot of energy, forethought, and yes, preparation. And going back to school is no exception to the rule. So as you or your kids get ready for pre-K to college, it’s important to approach your medical and health needs with the same zeal as those neon notebooks; to involve your young students in the process; and above all, to make it fun.

Parent Teacher Student Meeting

You don’t have to wait until Halloween to meet with school staff. Teachers usually return a week or so before the first day to set up classrooms and prepare for the year ahead. So whether you call the office or stop by to set up a meeting, make sure to get some one-on-one time before the first bell rings.

And of course, don’t feel limited to the homeroom teacher. Invite anyone who needs to be aware of your child’s needs (like the PE teacher, the school nurse, head of the cafeteria). And remember to make it fun! Bring cookies and milk, tea and sandwiches, or perhaps something special for the homeroom. Simple gestures like this help create a positive working relationship for the months and years to come.

Show and Tell

Before you can ask for help, it is essential to know what you need. So make a date with your child or teen to talk about the challenges of school (whether it is a special diet, the need to leave early for doctors appointments, or telling the other kids about their condition). And most importantly, figure out ways (together!) to overcome each one.

For younger kids, a big poster board and stickers help to literally map out this “big picture” approach and strategies. Or for a more involved crafts project, write your own story book about living with lupus that can be read to the class.

As for teens and young adults, give them the reins as much as possible. Such as helping them write notes to their teachers, creating special protocol sheets for different health circumstances, or organizing medical info folders for the essential staff. Need more artsy inspiration? Check out these food allergy tattoos.

It’s just one of many creative solutions that make taking care of medical challenges easy and fun.

Meet, Play, Love

The classmates in your child’s life are just as important as the school staff. And getting to be like the other kids -- participating in play dates and sleepovers -- is a huge part of staying healthy and happy. So it is important to get other parents involved, so that both you and your child have the support and confidence you need.

But these conversations don’t have to be dull. Again, THINK FUN. Invite everyone over for an afternoon, and while the kids pretend to be dinosaurs or space warriors, break the ice with the moms and dads by serving up lemonade and treats. Then let them know the kinds of things your child would need during a playdate or sleepover, gauge their comfort with these requests, invite their own suggestions, and of course always express your appreciation for their support. Because when you welcome others into your world with enthusiasm, they’ll be excited to play along.

As for teens and college students, make use of social networks! Encourage them to use Facebook and Twitter to find peers (beyond their classroom) with the same health needs. The exchange of online support will not only help them feel a part of greater community but will also generate new ideas on how to live a full, healthy life.

For more special diet, low-sodium advice, recipes, and adventures, visit www.SodiumGirl.com. And pick up a copy of Sodium Girl’s Limitless Low-Sodium Cookbook from Amazon, Barnes & Noble, or anywhere books are sold.

Health Educator's Perspective: The positive effects of true wellness with lupus

Dawn Isherwood, Health Educator

We hope everyone is having a great summer and enjoying time outside with friends and family.

Even with the best medical technology available, true wellness must come from within. Genetics, environmental factors and hormonal factors can all be influenced by our everyday lifestyle choices. As we all know, current medication therapies for lupus can be difficult and may cause nausea, weight gain or loss as well as possible bone thinning. Learning to complement your treatment with healthy lifestyle choices may help decrease symptoms and may lead to minimizing the need for difficult therapies.

So why are lifestyle factors so important when treating the whole person who has been diagnosed with lupus? Lupus is a disease of the immune system which can result in inflammation and the pain and symptoms associated with it. The immune system is very sensitive to lifestyle factors and responds very favorable to healthier choices particularly when it comes to diet, exercise and stress management.

Eating for health: While there is no special diet for lupus, it is recommended that those with lupus should try to eat a nutritious, well-balanced and varied diet that contains plenty of fresh fruits and vegetables, whole grains (barley, brown rice, flaxseed, whole wheat pasta), moderate amounts of meats, poultry, and oily fish (salmon, trout, sardines), as fish oil has been found to help reduce inflammation. Try to avoid processed foods, like flour and high sugar items.

Let’s get moving: I encourage you to exercise regularly or engage in some kind of movement. Most people with lupus can take part in some form of activity. Making exercise a regular part of your life has been shown to decrease heart and joint issues and control weight gain caused by the use of corticosteroids. Studies indicate that exercise can be as effective as anti-depressant medications in controlling depression and anxiety that are often associated with chronic illness such as lupus.

Inflammation from lupus in the muscles, tendons and ligaments can lead to stiffness, pain and decreased mobility. Non-weight bearing exercises such as swimming, biking, tai chi and yoga can help decrease pain and stiffness, increase cardiovascular health and decrease stress and anxiety. Weight bearing exercise such as the elliptical machine, treadmill, walking and light weight lifting can help maintain muscle strength and bone density.

STRESS: There is no getting around the fact that there is stress in life and living with a chronic illness like lupus only piles on to those everyday stressors. Managing stress can have a significant impact your life and your lupus and improve your overall physical and emotional health.

Some simple ways to start are to identify the stressors in your life. Remember that there are things in your life that you can control and things that you cannot. Place your energy in those things you can control such as asking for help, learning to say no when you have the choice (don’t let those around you make you feel bad about saying no), listen to your body and rest when you need to, and don’t expect too much from yourself all the time (give yourself an emotional break). If your feel really overwhelmed, you may want to talk to your doctor or a counselor.

At the Lupus Foundation of America, we encourage everyone to take a look at their overall health. True wellness has been shown to have a very positive impact on lupus, along with your overall well-being. Always remember to check with your doctor before making any changes to your diet or exercise routines. For more information or if you have any questions, we invite you to call one of our health educators. You can also visit the Lupus Foundation of America’s website at lupus.org to learn more.

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Dawn E. Isherwood, RN, BSN, is Health Educator for the Lupus Foundation of America. Dawn can be reached at 800-558-0121 or by filling out this contact form.

Activists Do Make a Difference

by Kimberly Cantor, Senior Director of Public Policy and Government Relations

Kimberly Cantor

I am inspired by you - by lupus activists. It is that simple. The excitement, enthusiasm, and empowerment felt during the recent Lupus Foundation of America National Lupus Advocacy Summit held June 24-25, 2013 was amazing. All across Capitol Hill, I heard “we are lupus activists; we are here to tell our stories and make our voices heard!” The Advocacy Summit is always an energizing and rewarding event, and 2013 was no exception.

More than 250 lupus activists representing 30 states and the District of Columbia joined forces and spoke with one voice on Capitol Hill. Lupus Activists asked their Senators and Representatives to support lupus research funding and the National Institutes of Health (NIH) and to co-sponsor H.R. 460, the Patients’ Access to Treatments Act (PATA), which seeks to ensure access to treatments for lupus and other chronic conditions.

Lupus activists reinforced their requests when they presented the National Lupus Research Petition with more than 30,000 signatures calling upon Congress to expand the research effort on lupus. In addition, lupus activists also came out in force online generating more than 3,500 e-mails and phone calls to Congress.

What is even more exciting is lupus activists were heard! On July 11, the Senate Appropriations Committee approved a draft of the fiscal year (FY) 2014 Labor-Health and Human Services-Education appropriations bill giving a boost in funding to the NIH. And while the FY 14 Labor-HHS bill has a long and difficult journey ahead, the draft measure demonstrated great support for lupus research funding and federal lupus programs. In addition since June 25, 13 Representatives have agreed to co-sponsor H.R. 460 (click here to see a full list of co-sponsors) bringing the total number of co-sponsors to 66.

The Foundation leads the fight to secure more funding for lupus research and lupus programs, from Capitol Hill to State Houses across the nation. We had an amazing day on Capitol Hill, but the success of advocacy is not measure on one day. To be truly effective, lupus activists must be engaged year round in communicating with their members of Congress on the importance of lupus research funding and on access to treatments.

Help us keep up the momentum to educate Congress on the urgent need to provide more resources for lupus research and access to lupus treatments. Congressman McKinley (R-WV), the sponsor of H.R. 460 and champion, is pushing us to reach 100 co-sponsors by this fall, and we need your help to get there! Please take a moment to send your Representative an e-mail today asking them to co-sponsor H.R. 460. Help us solve the cruel mystery of this unpredictable and devastating disease!

Bringing Lupus Advocacy to Capitol Hill and Beyond - National Lupus Advocacy Summit 2013

On June 25, more than 250 lupus activists from 30 states and the District of Columbia converged on Capitol Hill to ask Members of Congress to support increased lupus research funding and access to treatments. These activists participated in 173 meetings with Members and their staffers. In addition, activists from all over the country took action by sending more than 3,500 messages to Capitol Hill to tell their lupus stories and reinforcing the requests that were being made in person. We asked Erin Kotecki Vest from Los Angeles, one of the many activists to join us in Washington, DC, to reflect on her advocacy experience, including a meeting at the White House.  

By Erin Kotecki Vest
 
From the day I was diagnosed with lupus, I knew I had to do something.

My family Googled the disorder and found very little information. And what they found scared the hell out of them.

When we finally got some good info from the Lupus Foundation of America, we were told research was scarce and drugs for the disorder even more scarce.

As I lost organs to surgeries and struggled with pain and fatigue and went from doctor to doctor, a lupus advocate was born.

As I continued to rely on my husband for support to get me through those tough days and to just pick up the slack around the house, a lupus advocate was born.

As my young children visited the hospital time and time again, or were rushed to a friend's house while Dad drove me to the emergency room, two little lupus advocates were born.

As part of the National Lupus Advocacy Summit, my family and I dipped back into my "other" life...the one I had before lupus changed it all. You see, I was (and still am when I feel well enough) a political blogger and social media strategist for BlogHer, Inc. Which basically means I took care of relationships with those important people in DC that make those important decisions and I managed things like Twitter and Facebook all for a living. I loved my job. I can not wait until I'm well enough to return to my job. And I'm not one to sit still very well.

So it occurred to me that I know some pretty darn important people, and they just might be able to help. After all, I do share my life online and millions have watched me go from interviewing President Barack Obama to an IV in my arm, receiving treatment, twice per month. And I KNEW more needed to know about auto-immune disorders and chronic illness. The toll is takes on our lives, on our finances, on our loved ones.

So I made the call. Or, more accurately, I sent the emails. And without hesitation the White House accepted my offer to sit down with my family, and a representative from the Lupus Foundation of America, to hear OUR story...and yours.



They want to help. They want the new Affordable Care Act to help. And we are all going to work together to make sure everyone stays informed on how to put the new healthcare.gov information and site to use for those who need it. But just as importantly...they listened. They listened as I talked about what many of us go through: the multiple doctors before we even know what the heck we're dealing with. The bills that never end because we don't have a cure, just ongoing treatments, the endless toll on our support systems- if we even HAVE support systems. And with wide eyes, like so many others, they listened with sympathy and awe learning for the first time what it's like to have lupus, an autoimmune disease, a chronic illness.

I also want to note that we were lucky enough to sit down with our own Congressman Buck McKeon. The Lupus Foundation of America folks set up the meeting and my family and I happily accepted. We need all the allies we can get in this fight- lupus is non-partisan.

Congressman McKeon was gracious and asked us many questions about the disorder. We, in turn, asked him to support HR 460 – The Patients’ Access to Treatment Act. I truly hope and EXPECT his support.

Lupus advocacy reached the White House this week and that is just the start. Now the real work begins as we turn our advocacy into funding, research, and relief for all of those- myself included- who suffer.

Editor's Note: It is not too late to make your voice heard. Visit our legislative action center to contact your Members of Congress today!

Guest Column: Summer Travel Packing List for Special Diets

by Jessica Goldman Foung

When lupus attacked her kidneys, Jessica Goldman Foung, also known   as “Sodium Girl”, made significant changes to her life, including her diet. It wasn’t long before she began to blog about the adventures of living on a no-sodium diet. This month, Jessica shares with us a summer travel packing list for people with special diets .

With summer months come summer vacations: spontaneous road trips, flights across country, backpacking in the great beyond, and if you're really lucky, an escape abroad. No matter the destination, though, every trip requires preparation. And for those with special diets, the packing list has a few extra items to tend to -- mainly, preparing food for every meal of the day.

But dietary limitations don't have to take the spontaneity or flavor out of adventures. Nor do they have to add stress to your well-deserved R and R. With a little extra effort and the following tips, anyone with any dietary needs can stay full no matter where the journey takes them.

Pack Smart

First and foremost, carry emergency snacks with you at all times -- I'm talking granola bars, tortillas, nuts and seeds, berries, individual nut butter or tahini packets, microwave oats, grains and rice, chia seeds, and anything else non-perishable that fits easily (and lays flat) in a suitcase or day bag. These treats will come in handy during plane rides, breakfasts, and lunches when options are scarce.

Also, don't forget to look in the baby food aisle. Toddler-friendly fare may have more nutritional value than flavor, but the latest lines of purees don't taste half bad. And if you're really hungry with no options in sight, these packets will keep you full and provide a daily fill of vegetables. They're also perfect for backpacking trips and day hikes when you want to keep provisions light.


And if you are willing to check a separate bag outfitted with an ice pack and perishable food, then the options become limitless. Make whatever you want to eat and call the front desk at your first stop to ask for a small refrigerator for when you arrive.

Send Ahead
If you are staying somewhere for a while, don't be bashful; send your pantry favorites ahead of time. Ship all of the non-suitcase-friendly food via mail to your hotel and enjoy the cans of beans, chips, salsas, dressings, and other staples when you arrive. Sometimes you can even ask the concierge to do a little pre-arrival grocery shopping for other items, like fresh vegetables or fruit.

Forget The View, Get a Kitchen
When searching for hotels, look for spaces with small kitchenettes. If your hotel doesn't have those options, remember you can always ask for a refrigerator and even a microwave to be placed in the room for minimal to no cost.

You can also skip the hotel and rent through VRBO or Airbnb, options that usually include access to a kitchen, a small stove, or at the least, simple cooking tools (like microwaves and electric kettles). Which means you can prepare fuller meals if you need to and make snack packs for day trips, all in the comfort of your rented room.

Go Raw
Take a tip from stove-free foodies and stock up on pre-washed, packaged vegetables. Whether you snack on snap peas or chopped kale, softened in a microwave, you can keep eating green while on the go.

Use Friends, Real and Virtual
If you can stay with a friend, you've struck special diet gold. Their kitchen, pantry, and stove is now yours, guaranteeing you safe and satisfying meals when you want. But even when you travel without a friend to visit, that doesn't mean a helpful hand is far. Use social media tools, like Facebook, Twitter, and Yelp! to search for others with similar dietary needs. Post questions to find the best diet-friendly restaurants or grocery stores nearby. And discover places and eats that only locals know about.

Spruce Up Safe Foods
Salads, steamed rice, and scrambled eggs tend to be easy to come by at restaurants and even airport terminals, but without dressings, nuts, or other toppers, they can taste pretty bland. Consider packing add-ons like spice blends and non-leak containers filled with ready-to-eat beans or cooked grains -- items that will add welcome bulk and bite to these "safe" menu options. Or for a sweeter snack, blend chia seeds with yogurt or even jam that you find along the road to make a protein-rich pudding cup on-the-go!

Research
Before looking at the weather for the week, do some research about the food and culture of the city (or country) you plan to visit. Visit travel blogs to explore the cuisine, what's typically on a menu, and how it is traditionally prepared. That way, you can smartly navigate a menu and understand which items will fit within your dietary needs. If there is a language barrier, you can also ask the concierge at your hotel to call ahead to restaurants and ask for special preparations. And get Googling. Map out the nearest grocery stores to figure out where you can stock up on treats as soon as you land.

Share Resources
Sharing is caring, and when you give people links to your favorite blogs and recipes, suddenly they have all the tools they need to make amazing food for you. The more information you can provide the hotel and restaurants ahead of time, the better you will eat.

No English, No Problem
Are you going abroad, beyond the border, where the language sounds a lot different than it does in your hometown? Don't fret. Just use all the same tips suggested here. Do the research. Understand the food. Get to know your hotel's concierge and staff. Find people abroad (whether friends, tour guides, or trusty companions you meet on tour) that can help you navigate restaurants and foreign menus. Find grocery stores before you go that will have food you can eat. Or send products ahead of time. And don't forget to bring a dietary card; it can be easily translated and handed to hotel and kitchen staff. Keeping you from worrying about your next meal. Or trying to perfect a foreign accent.

For more special diet, low-sodium advice, recipes, and adventures, visit www.SodiumGirl.com. And pick up a copy of Sodium Girl’s Limitless Low-Sodium Cookbook from Amazon, Barnes & Noble, or anywhere books are sold.