A Quick Guide to Vitamin D and Lupus

Carie ShermanBy Carie Sherman

Have you had your vitamin D levels checked recently? If not–you should.

Last summer, I learned I was severely D-deficient. And recent blood-work confirmed that because of supplementation, I’m deficient no more. (I count it as one of the reasons I say “better” when someone asks how I feel.)

Why is this vitamin so important for lupus patients? To start, there are studies that indicate a link.

Low vitamin D levels might have some bearing on the development and severity of lupus.
Our D levels are low because those of us with photosensitivity avoid the sun (vitamin D is “sunshine vitamin”).
The drugs we take (steroids and hydrochloroquine) might interfere with vitamin D levels.
SLE patients who receive supplementation may experience less disease activity.

Lupus or not, researchers estimate that 1 billion people worldwide lack proper D-levels.

What’s the Big Deal about D?

This is so cool: The Mayo Clinic outlines what the science says about vitamin D, breaking down each piece of evidence and grading the science behind it. Not surprisingly, nearly every autoimmune condition listed is given a “C,” indicating more research is necessary (support lupus research and Lupus Colorado!).

The “A” list includes:

  • Bone disease: softening, weakening
  • Kidney disease Psoriasis
  • Thyroid conditions
  • Lung disorders
  • Diabetes
  • Stomach and intestine problems
  • Heart disease

The evidence isn’t fully in on these items, but there are also some indications that improved vitamin D levels could lessen joint pain, lower risks of certain kinds of cancer, improve brain function and improve blood pressure.

Could You Be Vitamin D Deficient?

You might be at risk if…

You don’t have much sun exposure (true of most lupus patients!).
You have dark skin.
You have kidney dysfunction.
You are obese.
You don’t eat meat or dairy.
Your digestive system isn’t functioning well, as in celiac disease or Crohn’s.

There’s only one way to know for sure: Ask your doc for a blood test (she’s taking so much already, what’s another test, right?). If your levels are low, treatment is as simple as taking a pill.

I saw my energy go up and my pain levels go down soon after treatment. You’re already seeing your doc, so I think it’s worth asking about.

Meditating for Better Health (by an Unlikely Meditator)

Carie ShermanBy Carie Sherman

My best girlfriends like to play a little game with me. Well, more like “at” me.

“We” first played a few years ago, while everyone was visiting me for a long weekend.

Here’s how they play: They decide it’s time to play (without informing me, of course). Whenever there’s a lull in the conversation, they purposely stop talking. They exchange glances, then sit, wait, and count.

Why? Because they know I’ll break the silence. I find it impossible to sit in quiet. I compulsively seek chatter.

Many laughs have ensued at my expense. They’re well-deserved.

So, no one will be more surprised than them to find that I have a new habit. And it’s all about me…being quiet.

And I think you should adopt this habit, too.

Finding Better Health through Meditation

As humans, we’re conditioned to experience stress. Evolutionarily speaking, it’s what kept us from getting eaten by saber-tooth tigers. Those days may be long gone, but our bodies are still wired for stress.

Most of us begin our days like this: We burst into action as soon as we hear the starting gun (aka, the alarm). We race and race and race until our day is done, and we collapse into bed wondering where the hell the day went and why our bodies hurt.

Most of us are chronically stressed. It makes our stomach hurt, our blood pressure sky-rocket, and our energy tumble. (And that’s how stress impacts “healthy” people.)

The Basics of Meditation
Meditation is an ancient practice that can positively impact health. There are many types, like mantra meditation, relaxation response, mindfulness meditation, and Zen Buddhist meditation. Most types involve four elements: A quiet place, a comfortable posture, a focus of attention, and an open attitude.

Meditation and Chronic Pain
One of my biggest fears in life is that my health issues are “all in my head.” So my worst fears have been realized, as research has shown that pain originates in our brains. It’s not a condition; it’s a perception. But it doesn’t make pain less real. Psychotherapist Eric Garland was quoted in the May/June issue of Spirituality and Health magazine as saying, “The whole idea of pain being in your head is ridiculous, because anything that’s in your mind is in your brain, and anything that’s in your brain is in your body.”

Garland goes on to say that patients need to think of the mind as a powerful tool in controlling chronic pain, citing meditation as a component of treatment.

What Meditation Can Do For You

So What’s Your Excuse?
You don’t have time. BS. Unless you’re an ER nurse on an 18-hour shift who literally can’t find time to use the restroom, you can find a few minutes in your day that are just for you. Try this: Set the timer on your phone for 45 seconds, then close your eyes. Breathe in for 7 seconds, breathe out for 7 seconds. Congrats–you just meditated.

I can’t stop my mind from racing. This is correct! But it’s not an excuse. In fact, it’s exactly why you should practice meditation. First, note I said “practice.” It’s a skill that you develop over time. Second, your mind will be filled with thoughts. All you’re trying to do through meditation is let those thoughts flow without getting caught up in them. You don’t need to follow every thought down the rabbit hole.

It’s not for everyone. Do you breathe? Yes? Then it’s for you. Breathing is both voluntary and involuntary. Mostly, we breathe without thinking. When we consciously breathe, we can improve our immediate situation (there’s a reason we say “take a deep breath” before you face a challenge) as well as long-term situations.

I’m not a stinky hippie. Of course you’re not and neither am I. You don’t have to follow Phish or wear Birkenstocks or smell like patchouli to reap the benefits of meditation. It’s a practice that executives, celebrities and professional athletes also embrace.

I can’t sit like that (in reference to the position my daughter calls “criss cross applesauce”). Then don’t. You can still get the benefits of meditation sitting in a chair or lying down. Sometimes, I go for a “mindful” walk, where I focus my energy on the present moment (i.e., what I’m hearing, what I’m seeing, what emotions I’m experiencing, where I feel my emotions in my body, etc.).

Try It, You’ll Like It
Here are a few ideas to get you started:

  • Try a quick 3-step brain hack for happiness, specially designed for the skeptic.
  • Visit meditationoasis.com. Check out the free podcasts for guided meditations on a variety of topics ranging from “work breaks” and “creativity” to “pain” and “grief.” I use their app daily, and it’s helped me realize this: I spent 36 years desperately trying to NOT feel any emotion other than happiness. Humans are meant to experience our emotions.
  • Download an app. I’ve tried Headspace, which is narrated by a fabulous Brit who walks you through the process.

Chronic pain is no joke. I started meditating daily about six months ago–and I can vouch for its positive effects. I don’t have a special routine and I try different methods. But I am consistently quiet a few times a day. If I can do it, anyone can (just ask my dang friends!).

The evidence is there. Isn’t it worth a shot?

To gluten or not to gluten: That is the question

DSC_0768By Carie Sherman

It’s a question on a lot of people’s minds, especially those of us who just want to get better.

Promotion of the gluten free lifestyle is everywhere. There’s even speculation that gluten is a reason for the increased incidence of–yep, you guessed it!– autoimmune disorders.

Change Your Diet; Cure Your Incurable Disease

There’s no known cause of or cure for lupus. And despite the fact that a quick search of “lupus + gluten” reveals “studies” that link the two, it hasn’t been proven. (In a lab. By scientists. Real ones, who follow scientific standards and whose research can be duplicated in the lab by other real scientists. Findings that have been peer-reviewed. That kind of study.)

Despite that fact, there’s a movement on the interwebs that strongly suggests wheat is Public Enemy Number One. Books and blogs have been written. Conspiracy theorists have gotten on board and celebrities are endorsing the GF lifestyle.

And, no surprise here: the consumer-market is fully engaged.

So why all the interest in going gluten free? Is it just a fad? Should the average lupus patient try it?

Confession: I’m Gluten Free

I’ve been off gluten for nearly a year. I made the change at the suggestion of a well-respected rheumatologist. (The suggestion was given with the preface of: There isn’t any scientific proof to this, but I’ve had patients feel better off gluten.)

That was good enough for me.

When you feel like crap, you’ll try anything. Even if science can’t back it up.

When Gluten Free is Medically Indicated

A gluten free diet is the only treatment for an autoimmune condition called celiac disease. According to the Mayo Clinic, celiac disease is “an immune reaction to eating gluten, a protein found in wheat, barley and rye. If you have celiac disease, eating gluten triggers an immune response in your small intestine. Over time, this reaction produces inflammation that damages the small intestine’s lining and prevents absorption of some nutrients (malabsorption). The intestinal damage can cause weight loss, bloating and sometimes diarrhea. Eventually, your brain, nervous system, bones, liver and other organs can be deprived of vital nourishment.” In kids, celiac can affect growth and development. My husband has a friend whose daughter wasn’t growing. She grew 3 inches in a year post celiac-diagnosis by following the only known cure: the GF diet.

I was tested for celiac, which involves blood tests that look for elevated levels of certain antibodies as well as genetic indicators. My antibody levels weren’t elevated but I did have the genetic markers. Confirmation for me would involve an intestinal biopsy. Coming off a year of multiple, lengthy MRIs (where I accurately self-diagnosed myself with claustrophobia) and receiving electrical shock testing, I was over it. So when the doc said I could try GF and see if I felt better, I went for it.

And my headaches stopped, and my brain was less foggy.

So I stuck with it. But here’s the thing: I can’t remember HOW much better I felt after going GF. And I can’t remember if anything else could have caused my symptom relief. (Did I start any new meds? Was I on steroids? Had my sleep apnea treatment just started working? Did I feel better because I was eating more whole foods and cut out junk?)

It’s likely that I have a gluten sensitivity (it’s a real thing). If you’re sensitive to gluten, a GF diet will help alleviate symptoms. Yet I’m kicking myself for not getting that biopsy. Because once you go GF, it’s difficult to go back. I really miss bread.

GF is all or nothing. You can’t go “almost” GF. And each time you accidentally ingest gluten, you feel awful. It’s not a weight-loss miracle (Milk Duds are GF). I’m the anchor on the fun boat of eating French food and drinking beer and going out for pizza. My hubby is more than a little over me saying “I can’t eat that” when he’s in charge of dinner.

And anecdotally-speaking, I’m a year out and I still have undifferentiated connective tissue disorder and Sjogren’s Syndrome and IBS and GERD and fibromyalgia.

But I do feel “better.”

What’s the Evidence?

Although most of us have heard a plethora of anecdotal evidence on GF lifestyles, science hasn’t shown any links as it relates to autoimmune disorders. It’s true that the research on gluten–particularly as it relates to non-celiac gluten sensitivity— is lacking.

In fact, there are a handful of studies that suggest the reason people feel better off of wheat has nothing to do with gluten at all–rather, other proteins contained in wheat that we don’t fully understand. Writer (and fellow GF-er) Roxanne Khamsi says in the above referenced article that further research can help clinicians develop more accurate tests for various grain-related sensitivities. She states: “Ultimately clinicians hope such tests will help people who have a genuine medical condition to avoid the specific constituents of grains that make them ill and will stop others from unnecessarily cutting out nutrient dense whole grains.”

One Blogger’s Opinion on Do’s and Don’ts

If you’re considering going gluten-free based on anecedotal evidence, I completely understand. But it’s important you fully understand your choice.

So for what it’s worth (remember, I’m a blogger, not a health expert):

  • Don’t self-diagnose. Go to your doc, get tested, and don’t stop eating gluten until you’re diagnosed. If you quit before you’re tested, your test results won’t be accurate. Many people feel better GF. But years from now, you’ll want to know if you’re sensitive or if you have celiac.
  • Do consider your diet. We don’t understand lupus, and great nutrition isn’t what we Americans are known for. Most of us eat way too many processed foods. So it makes sense to give your body a break and eat real food — sick or not.
  • Don’t assume what works for one lupus patient will work for another. We’ve accepted that lupus presents differently in every person, which is why it’s so difficult to manage and treat. I think we can also safely assume that a one-size-fits-all approach to diet isn’t the answer either.
  • Do consider a visit to a nutritionist. I haven’t done this yet, but it’s been on my to-do list for a while.
  • Do what’s right for your body. My grandpa won’t touch onions or garlic or chocolate. My grandma swears that eating nightshades (eggplants, tomatoes) makes her arthritis flare. Most people I know have labeled at least some food as bad for their body. So my best advice? Let your body be your guide and don’t hang your hat on the hype that surrounds this diet or that.

What’s the Bottom line?

I know if I post that there “isn’t” evidence of GF being right for everyone, this blog will see more enraged comments than a post about politics (seriously, medical professionals can’t blog on the topic without getting really inflammatory comments!).

So I’ll just say this: Anecdotal evidence exists that suggests a GF diet can be helpful for some non-celiac patients. But as of today, there is no science that suggests a link between gluten and lupus. Period. So until the science (you know, that published-in-a-peer-reviewed medical journal-type science) suggests otherwise, be wary of gluten free being a cure-all for your autoimmune disorder.

Are you gluten free? Have you made dietary changes that have benefited you? Share in the comments below.

May Newsletter

It Starts in the Lab: Why Everyone Wins When You Support Lupus Research

DSC_0768By Carie Sherman

Hooray, hooray, the first of May! Okay, I’m a little late there. But it’s for good reason: Lupus Colorado has updated their website. It looks awesome. Nice work, Team LC!

But, again, hooray! Because it’s May, which means it’s Lupus Awareness Month.

Beautiful month. Terrible disease.

Twenty years ago, while I was putting the finishing touches on my college entrance essays, lupus patients everywhere were receiving grim news: 40 percent of people diagnosed with lupus were NOT expected to live more than 3 years.

Today, more lupus patients than ever can expect to live a normal life span. Yet these facts remain:

There is no cure.

  • More than 1.5 million Americans have it.
  • Even “mild” cases can be debilitating and if not monitored appropriately, life-threatening.
  • Prior to the FDA-approval of Benlysta in 2011, it had been 50 years (!!!) since a new lupus therapy had been introduced.
  • More than 90 percent of people with lupus are women.
  • Women of color are 2-3 times more at risk for lupus than Caucasians.
  • Lupus research is underfunded and poorly understood, despite the disease’s prevalence.

So what can be done about this disease which has no known cause, few medicines, and no cure?

To me, that answer is simple: Support lupus research.

Supporting lupus research is a win for everyone. Why?

  • The incidence of autoimmune disease is rising. The National Institutes of Health estimate, “up to 23.5 million Americans have an autoimmune disorder,” (cancer affects up to 9 million; heart disease = 22 million).
  • An increased understanding of immune system activity can benefit us beyond lupus — people who receive transplants, AIDS patients, cancer patients, and patients of infectious disease are also likely to benefit from increase knowledge.

Help LC Support the Lupus Research Institute (LRI) Harness the “Power of 10” CampaignPower-of-10-Image140

Advance lupus research by getting informed and getting involved. According to the LRI, lupus is considered to be the scientific prototype for autoimmune research because the immune system can attack any part of the body. When scientists unlock lupus, the door may open for some 100 other autoimmune diseases affecting millions of people.

  • Lupus patients, consider joining a clinical trial. Every medication we currently take was approved because of volunteers.
  • Spread awareness. Email 10 friends or post info on your social media platform of choice. I changed my profile pics–did you?
  • Donate. Gifts of any size can make a large impact. I just sent a text that said LUPUS to 50555 to make a $10 donation to the Lupus Research Institute (92 cents of every dollar goes directly to research).

Before my doctor handed me that slip of paper saying “systemic lupus erythematosus,” I knew nothing about lupus. The last few years have been eye-opening to me in terms of the number of people who suffer (often in silence), the misunderstanding of autoimmune disease, the lack of tolerance we as a society have for chronic illness, and the lack of understanding we have about systemic disease. We have a lot to learn. Any donation helps.

Help those with lupus on a limited budget

lupus emergency assistance As a 22-year-old student with lupus who living on her own, Tatiana Huffman doesn’t have a lot of extra money.

“Right now all of my money goes toward paying for school and paying my medical bills,” Huffman said.

“It is very overwhelming and sometimes depressing. Unlike most of my friends I can’t hang out at the mall and shop all because I literally have no money,” Huffman said. “My body physically can’t do the things that most 22 years old are doing. And shopping is not a necessity in my life, whereas my health is my main priority.  At 22, health issues aren’t what most young woman have to deal with.”

Huffman was diagnosed with lupus at 19. Her kidneys are impacted and she experiences high fevers, rashes and a lot of pain.

Lupus Colorado is always looking for ways to expand our reach to better meet the needs of people like Huffman in our state. She recently received assistance from Lupus Colorado.

For more than 40 years, Lupus Colorado has served as a resource for not only the understanding of the signs, symptoms, treatments, and outlook for the disease, but also helping patients to find both emotional and practical support during their times of need.

Through the use of an assistance fund, Lupus Colorado has been able to help individuals and their families affected by lupus with their utility, medical and dental bills, eye glasses, bus passes, and groceries, even purchasing beds for two individuals with lupus who had been sleeping on the floor. Lupus Colorado has tools that can help Coloradans with the disease. But they can’t do it alone. With help from supporters like you, Lupus Colorado can replenish the assistance fund and continue to serve as a resource for individuals and families affected by lupus.

“The Emergency Financial Assistance Fund was such a blessing,” Huffman said. “Right after Gayna called, I immediately said a prayer just thanking God. This was such a blessing. Words cannot even describe how it came at such perfect timing. I am just so grateful.”

Donate to the Emergency Financial Assistance Program here. 

First Class (Pass)

sandy-kanowitz-731x1024On a recent trip, I flew an airline that I rarely fly. The feeling was oddly familiar, like something from the past, when I heard the boarding call for first class.

An uncomfortable cringe crept through me, and I thought, “Really…I thought the class structure was history, passé in our modern thinking of equality. I took my aisle seat in row 2 of coach, “second class,” I bemused, and watched through the silvery sheer curtain separating those 12 “special” passengers from us common folk.

As I sipped cheap wine, for which I was charged, from a generic plastic cup, I saw them receiving complimentary bottled wine in stemware. I didn’t even get peanuts, but first-class was served a full meal on china with real silverware. One attendant catered to them solely, while two attendants scrambled to serve the remaining 138 passengers in coach. An older gentleman even put his hands on the shoulders of the first class attendant and whispered something in her ear, reminiscent of the 60’s and 70’s when women were “Girl Fridays,” to men of stature. I watched with interest but dismay at this decades-old behavior that seemed so inappropriate now. I felt like a “have not,” watching the “haves,” from the outside.

Granted, people have the right to a bigger seat, up front if they want, and other special perks for which they pay extra. But when the announcement was made that the front lavatory was for first class only, it reminded me of the signs on restrooms and restaurants in decades past that prohibited blacks and Jews from entering.

What does this have to do with lupus? There are many different aspects to discrimination, and we who have health problems face our share. We struggle with financial hardships because of inability to work and  higher than usual health care expenses. We face on-the-job discrimination, and 90 percent of us are women, “Girls Sunday through Saturday,” on duty 24/7 for our families, in spite of our illness. Men with lupus are stigmatized because it is not deemed “masculine,” in our society to be ill or not function as the “breadwinner.” We are all first class though in our effort and fortitude to swim upstream against the odds of unpredictable flares, pain, and horrendous fatigue.

How can we eliminate these discriminatory relics from the past, including class delineations, gender and racial inequalities, and even the stigma associated with illness or handicaps? I, for one, am going to send this article to the CEO of unnamed  airline, and continue to support airlines whose passengers are treated equally, with special assistance to the elderly, ill, handicapped, and families with small children. Those airlines where passengers can pay for extras discreetly from any seat, and there is no silvery curtain separating people based on wealth, stature or class. I would prefer our military men and women get special perks for their committed service to maintain our freedoms.

Now that I am stiff from sitting, hurting all over, and have a full bladder, I’ll begin my long journey from row 2 to 26 where a good second class girl can stand in line waiting for the back lavatory. On your next trip, be selective, and have a nice flight!


Planning for life

AnitaWCactus (2)Dear Gentle Readers,
I recently took a course on Meaningful Preparation for End of Life Choices.

You might think that this was a course about death. On the contrary, it was a course about life and how you can plan the time you have left to prepare for your death and to live well during the time you have left. For some of you it will be a brief time; for others it will be decades. For some it will be a “good” death; for others it will be a “bad” one. We have within our power the options to decide what we want and to put in place those things that will make the end a meaningful and pleasant experience.

First, we must remember that lupus is a lifelong illness, and no matter how we plan our future, lupus may outsmart us on any given day. We may plan a vacation and find that we are spending those beautiful vacation days in the hospital. Been there, done that. Second, we must always be prepared for a lupus flare. That means that when we plan a trip, we must be ever mindful of the things we must do to plan for a great vacation. That is bring all the pills you need for every day of your trip and a few days extra in case of a trip delay. Get the name of a doctor you can see in the place you are going. Pack lightly and only what you can carry. If you are going on an escorted tour, tell the tour director of your special needs if any. Shorter trips are more doable that longer ones because fatigue is a large part of lupus.

The above might be called our bucket list, the list of places you want to see and the things you want to do in the time you have left. Make that list. Prioritize that list. Start to plan for the first thing on your list. By the way, you can always re-prioritize your list.

lupus colorado planned givingGet your affairs in order. This means that you need to have a will. You need to have a durable medical power of attorney and an Advanced Directive.  An ethical will would be great to have. How to get this done the best way is to go to an attorney that specializes in drafting wills and other legal documents and ask her to help you with your important documents. Wills can always be changed and so can other legal papers, so start with one and think about it for a while. If it suits your needs and wishes, great. If not, you can always change it.

You may also want to put a planned funeral in place so that your children or other heirs do not need to have to deal with this. There are so many things that need to be done that some advanced planning is very helpful.

OK, now that you have done all this, it’s time for some fun. We’ve talked about the end of life, so now let’s talk about between now and then. Hopefully you will have many good days with your lupus at bay. Think about what you would like to do with that time. For me, volunteering is really important. I have gained a lot of knowledge and experience in my working years and I want to share this with some organizations that could use my help.

As you know, I write columns for the Lupus newsletter. I have served on the board of the Lupus Foundation. Now I volunteer for the Arthritis Foundation and give my time and efforts to advocating for issues that are important to people with arthritis and lupus. I go to Congress and ask our Senators and Representatives to consider bills that will give money for Arthritis research and for reducing the amount of money patients have to pay for co-pays on expensive drugs.

You can choose different ways to give back to your community that has helped you along the way  to making lupus easier for you to manage. Lots of places need your help. You can work from home on the telephone. You can work in the office of an organization that needs your help. You can write letters to your Members of Congress asking for their help on issues of importance to you. You can help at your church or synagogue. Even if you can only give a small amount of time, please don’t hesitate to give it.

I’m going to end this column with a poem written by Robert N. Test, American Poet (1926-1994),who assisted in developing organ transplantation.

To Remember Me
Give my sight to the man who has never seen a sunrise, a baby’s face, or love in the eyes of a woman.
Give my heart to a person whose own heart has caused nothing but endless days of pain.
Give my blood to the teenager who was pulled from the wreckage of his car, so that he might live to see his grandchildren play.
Give my kidneys to one who depends on a machine to exist from week to week.
Take my bones, every muscle, every fiber and nerve in my body and find a way to make a crippled child walk.
If you must bury something, let it be my faults, my weaknesses, and all prejudice against my fellow man.
Give my sins to the devil.
Give my soul to God.
If, by chance, you wish to remember me, do it with a kind deed or word to someone who need you. If you do all I have asked, I will live forever.

Until next time,,,

©2014 All rights reserved. Anita Fricklas

Lupus Colorado LRI