Tag Archives: lupus

The Sick Community

Examining an interview with author (and chronic illness patient) Laurie Edwards and her new book In The Kingdom of the Sick.

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As maybe some of you can relate, I’m an NPR junkie.  I’m entertained while driving, cooking, or working out to the sounds and stories of All Things Considered,  Marketplace, and more.  But this week I was particularly struck by one episode of Fresh Air, where host Terry Gross interviewed a young woman with a rare respiratory disease called primary ciliary dyskinesia (PCD).  The episode was called: “Living with Chronic Pain in the ‘Kingdom of the Sick'”.  Like lupus, PCD is a chronic illness for which there is no cure.  As such, patients live with the illness as part of their life– living day by day, constantly burdened by the unpredictability of the disease.  As I was listening to the interview, I became aware of how similar those of us are who have a chronic illness.  Though our diagnoses are very different, we all go through the same emotions, struggles, and obstacles.  We all face stigma, we all have fatigue and pain, and we are mostly women.  I encourage you to listen to this 30 minute interview here, where Laurie Edwards discusses her condition, as well as her book In the Kingdom of the Sick.

Edwards covers a range of issues related to living with chronic illness, so I wanted to just comment on a few of them.  First off is the issue of what it means to live with a chronic illness.  Many of the illnesses we in the “sick community” suffer from are largely misunderstood.  Edwards discusses going to the emergency room and the ER doctors not knowing anything about her condition.  I similarly have faced the same problem when I tell ER doctors that I have lupus.  So if some doctors don’t even “get it”, then forget about explaining it to others!  But Edwards explains about how being upfront and honest with her illness, explaining her illness to others, and not trying to hide her illness has actually been beneficial to her.  People appreciate and understand honesty, and talking about the disease will also help bring public awareness about it.  Awareness, furthermore, is so critical to getting funding for rare diseases.  Edwards compares PCD Awareness Month to that of Breast Cancer Awareness Month.  While no one knows what PCD is, everyone knows what breast cancer is.  People proudly display their pink breast cancer ribbons because there has been a tremendous amount of awareness for this disease.  The goal for those of us with more rare and less publicized illnesses is to raise awareness for our own benefit– as well as future patients.

The most interesting part of the interview, to me, was Edwards notion of the “gender bias” in medicine.  It is mostly women who suffer from autoimmune diseases and other misunderstood chronic pain conditions such as fibromyalgia. She comments:

There is a long-standing connection and perhaps bias about patients who are female.  It’s very easy to say, ‘Oh, well, she’s just hormonal, she’s emotional,’ and that was sort of underlying the historical nervous exhaustion diagnosis, and it’s certainly a big part of the attitudes towards women with these conditions now. … It’s just an iteration of a long-standing attitude.

Edwards goes on to discuss the gender biases that women with chronic illness have to battle.  Many doctors pass off women to suffer from fibromyalgia to being depressed or stressed.  The relationship between pain, depression, and stress is misunderstood by many in the medical community.  It is often not that pain is caused by stress & depression.  It’s that being in pain constantly can cause someone to become depressed and stressed.  I think this issue of a gender bias is an important point of discussion.  Edwards points out what happens when men and women visit a doctor with the same pain symptoms.  How are they treated?  Men are most often prescribed pain killers, while women are most often prescribed anti-depressants.  That is to say, women are seen as more emotional and hormonal, and often doctors do not take their pain as seriously as that of a man.  Edwards points out that it is confusing why the diseases of chronic pain are indeed mostly women.  Scientists and doctors are just beginning to unravel the reasons why this is the case.  We know that there are certain hormonal and physiological reasons why women suffer from these pain disorders.  Hopefully once these biological differences are uncovered, we will better understand how to diagnose and treat women with chronic pain.

So those of us with chronic illness (no matter what the illness may be) have a lot in common.  We are mostly females in a sick community– what Edwards refers to as “The Kingdom of the Sick”.  We face issues of stigma, gender bias, and generally being misunderstood.  So perhaps the best approach for us in the sick community is to have a stronger voice.  That is, to be open and honest about our illness with others, to question the treatments prescribed by doctors, and to advocate for more funding and research for our condition.

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Ch-Ch-Ch-Chia!

Reaping the health benefits of this mesoamerican superfood.

Chia Seeds

Chia Seeds

With all the processed food, refined sugar and grains, and packaged items that dominate our American diet, I’ve noticed a trend that nutritionists are pushing: Go Back to the Basics.  There is a movement to return back to the basics, by eating whole, natural foods.  We should ask ourselves, what did people eat hundreds (or even thousands) of years ago?  How did our ancestors get their nutrients?  I’ve seen lots of different diets out there that claim to link nutrition back to what our ancestors ate to survive– from the “paleo” diet to the movement for eating local and seasonal.  Certainly our ancestors didn’t get through the afternoon slump with a power bar or a red bull.  They turned to natural sources of nutrients in their environment.  In my quest to go back to the basics of food, I’ve discovered a remarkable superfood: chia seeds.

I know what you’re thinking when I mentioned chia.  The all-to-catchy “ch-ch-ch-chia” tune to the time lapse image of a growing, sprouted puppy dog in a terracotta pot.  Well, actually, this is the same seed used to sprout the famous Obama ‘fro chia pet.  But it turns out that these seeds have more benefits than being grown into groomed, green figurines.  In their raw form, chia seeds are now catching on as a superfood, with an abundance of nutrients.

In terms of going back to the basics, chia seeds were a staple in the ancient Mayan and Aztec diets.  The word chia is actually the Mayan word for “strength”, as they described the energy and stamina they got from these seeds.  After thousands of years since the Mayans and Aztecs were chomping on these seeds, nutritionists are rediscovering the incredibly valuable nutrients these seeds contain. Let me point out a few of the health benefits of chia seeds:

1.) Fiber.   Fiber helps our digestive systems perform at their best, and 2 tablespoons of chia give you a whopping 40% of your daily fiber.  (Let’s just say my digestive system is working great with the help of chia!)

2.) Omega-3 Fatty Acids.  We constantly hear about the benefits of omega-3 fatty acids, commonly found in many types of fish.  For us vegetarians, it can be tough to get these fatty acids without taking a supplement.  But guess what?  Chia has more omega-3 fatty acids than salmon!  It’s one of the most concentrated sources of omega-3 in any food.  Omega-3 is known to have anti-inflammatory properties, so it’s particularly important for those of us with lupus.

3.) Calcium.  Again, those of us who avoid dairy can have a bit of a tough time getting enough calcium.  2 tablespoons of chia has 12% of your daily calcium.  This is important to help build strong bones and avoid osteoporosis.

4.) Protein & Iron.  Chia is a good source of both protein and iron.  2 tablespoons of chia have 6 grams of protein, and 8% of your daily iron.

5.) Satiety.  Eating chia helps you feel full and satisfied.  This is a result of the protein, fiber, and gelling action of the chia seeds.  If you feel full and satisfied after eating, you’re less likely to overeat.

These are just a few of the amazing benefits of chia.  Others include: blood sugar regulation, antioxidants, minerals, and more.  While other superfoods like flax seeds can also have similarly incredible health benefits, they have to be ground up.  Chia seeds are convenient in the sense that they can be digested whole.  I’ve found that they are easy to find in most grocery stores now.  Even Trader Joes is now carrying them!

My favorite way to eat chia is in chia puddings.  An interesting quality that chia seeds have is that they develop a gelatinous coating when added to liquid.  I combine 2 tablespoons of chia seeds with a cup of vanilla-flavored almond milk and let it sit in the fridge overnight.  (If you want to add a little sweetness to the pudding, you can stir in a little honey or agave.)  The chia seeds thicken, and it creates a pudding-like texture.  I enjoy the chia pudding the next morning for breakfast!  I have been eating one of these chia puddings every day for the past few weeks, and have noticed that I’m less hungry, less bloated, and have more energy.  So, perhaps we have a thing or two to learn about nutrition from our Mayan friends.

Chia Pudding

Chia Pudding

The Impact of Support

Having a social network of supportive friends, family members, and partners can help ease the stress of coping with chronic illness.

Denial.  Anger.  Fear.  Grief.  Acceptance.   These are the common stages of emotions one goes through when being diagnosed with a chronic illness.  In my experience, I have certainly gone through all of them– though not necessarily in this particular order.  I bounce around from one stage to another, often backtracking to the initial “denial” stage, with thoughts like: “This disease isn’t going to impact my life.”  During a flare, my first emotion is always anger: “I’m pissed off!  I can’t believe this is happening in my body!”   From what I’ve read, learned, and experienced, the goal is to get to mental state of acceptance.  Acceptance, for me, is certainly not accepting that my fate is in the hands of a disease.  It is, however, accepting that the disease is (unfortunately) a part of my life– but does not define my life.  The right mind set is so critical to quality of life, especially when illness is in the picture.  The goal is to reach a mental state of acceptance, where you acknowledge that the disease is here to stay– but realize that it’s going to be ok.  It is a mindset of optimism, forward thinking, confidence, and realization that life does, indeed, go on.  Perhaps you’ll even realize that your life is more fulfilling and meaningful having battled a serious illness.

I may have a degree in psychology, but I’m certainly no expert in the psychological impact of chronic illness.  But having been diagnosed with lupus myself, I can say there certainly is a significant psychological impact.  Learning how to deal with the impact of a disease can be confusing, frustrating, and scary.  As I said, I still have moments where I face the feelings of denial, anger, fear, and grief.  But I’m thankful to be at a place now where I truly feel a sense of acceptance most of the time.  I have had to make sacrifices and changes in my life in order to be able to live “normally” with this illness.  But I see these changes as positive, and have a renewed appreciation and meaning in my life.

So how did I get to the stage of acceptance?  I largely attribute this to the amazingly supportive people in my life.  It’s so critical to have a support network– a group of people who care, who listen, and who don’t judge.  They are the people who remind you that you’re capable, who validate your feelings, and who provide encouragement.  I’m lucky to have so many supportive people in my life.  I find support with my loving family and friends, who have shown me support in countless ways.  I find support in my husband, who married me just one month ago, and reminded me that he will be by my side “in sickness and health”.  And I also find support in a more traditional way: a “support group”.  I have found an amazing organization called Lupus LA, a nonprofit dedicated to bettering the lives of lupus patients in the LA area.  They offer support groups throughout the city and surrounding counties.  I have found a tremendous benefit to being able to talk through my experiences with others who can relate.  The empathy this group provides is so encouraging and comforting.  I’m very thankful to have such an amazing support network around me.

So, the impact of support can be huge.  Support can help ease the psychological impact of dealing with chronic health issues.   It’s important to surround yourself with those people who show you compassion.  Don’t underestimate the power of positive people in your life.

Voting for Health

Weighing in on how this election impacts my health.

My intention for this blog has been to discuss my experience with having lupus, and to explore the various avenues to health and healing.  It has never been my intention for this blog to have a political tone.  However, the reality of the situation is that healthcare is a political issue.  And this election could be one of the most important for those of us in the midst of the healthcare crisis.  My experience in fighting a chronic disease has been made much easier due to the fact that I currently have health insurance.  I’m lucky to have come from a family with a good financial situation, to have access to top-tier education, to have gotten a job in a competitive field, and to have the money to afford alternative treatments.  But even despite having family support, money, education, and employment, I have begun to face my reality: Having a lupus diagnosis will prevent me from gaining access to healthcare in the future.  With the words “PREEXISTING CONDITION” slapped all over my healthcare records, there are very few options left for me in terms of health insurance.  This is a reality I wouldn’t have imagined ever having to face in a country that claims to give equal rights to all of its citizens.

After going off of my parent’s insurance plan, I first got my own health insurance through a full-time job as an elementary school teacher.  I choose this job largely in part due to the benefits it provided, as having health insurance was a priority to me.  Though the HMO plan I was offered through my employer gave me far fewer options than I had previously had, it was a good starting point for a first-year teacher.  Unfortunately, my health declined rather quickly over the course of the school year.  After battling pneumonia, bronchitis, Raynauds, high blood pressure, joint problems, pleurisy, fatigue, and migraines, my doctor insisted that I stop working.  My sharp decline in health brought multiple ER visits, high fevers, steroids, antibiotics, and more.  I used up my allotted sick and vacation days quickly, and was beginning to take sick days without pay.  I had no choice but to stop working and go on state disability.  I took the much-needed time to visit countless doctors until I finally got some answers about what was going on in my body.  I was able to get answers because I had health insurance.  Most lupus patients take 10 years (or more) to even get a clear diagnosis, because the disease is such a complicated one.  I can’t even imagine how much more agonizing, scary, and frustrating my experience would have been if I was one of the 49 million Americans that doesn’t have health insurance.

After getting my diagnosis and continued to battle constant flare ups, the picture became more and more clear about my prognosis.  I have a chronic disease for which there is no cure, and my physical limitations prevent me from going back to full-time teaching.  Without my full-time job, I have been left wondering what to do about my health insurance situation.  I have been paying out of pocket for a COBRA plan.  But as we all know, COBRA coverage only lasts 18 months.  My time is ticking until that dreaded day when my COBRA runs out.  In an effort to find other options, I’ve called every major health care provider.  I have been denied coverage by all of them.  What this experience has shown me is that healthcare in this country is a luxury— when it should be a right.  Without equal access to healthcare, we can’t claim to be a society that promotes “liberty and justice for all”.

My looming healthcare crisis has weighed heavily on my vote for today’s presidential election.  In just three months my healthcare coverage will end, and I will be faced with a difficult situation.  I cannot afford the prescriptions, hospital visits, doctor visits, and medical tests without the benefit of health care coverage.  And the new treatment that my rheumatologist has proposed to treat my lupus (Benlysta) would simply be out of the question, as it costs $30,000 a year.  Without access to healthcare, my life would be dramatically different, and my health would be significantly worse.  Unfortunately, this is not a crisis that I am facing alone.  I have friends and family members who are in the same predicament.  And there are millions of Americans out there who are struggling with the same anxiety, fear, and stress about their lack of affordable care.  For the benefit of all of us facing the healthcare crisis, I’m choosing to vote for Barack Obama.  Obama has shown me that he cares and sympathizes with people like me who have preexisting conditions that prevent them from access to healthcare.  He has worked to put in place The Patient Protection and Affordable Care Act (“Obamacare”) in order to restructure the healthcare system.  He has worked to ensure equal access to healthcare at an affordable cost, and to ensure that every American is insured as a measure of preventative care.

Simply put, having health insurance is necessary for me to continue to fight my illness.  We all know that healthcare is a political issue, and this election can determine the future of a just healthcare system.  There is clearly a candidate who supports equal access to healthcare.  If you haven’t already, get out there and vote!

Fighting Fatigue

 

Finding ways to cope with the fatigue that accompanies autoimmune disease.

After my recent trips to various doctors and hospitals, discussions with other lupus patients, and my endless independent research, I’ve learned that no two cases of lupus are alike.  This is perhaps what makes diagnosing lupus so incredibly difficult. Every one of us experiences the illness in a different way and presents very different symptoms.   Our symptoms can range from joint pains to rashes to organ involvement.  But through talking to many people that also live with lupus, I’ve discovered one unifying trait among all of us: fatigue.  Yes, having lupus is exhausting.  All of us with autoimmune problems encounter this inevitable problem of never-ending tiredness.

I would argue that the most debilitating part of living with lupus is what I refer to as “body fog”.  Many days I feel as though my whole body is stuck in a thick fog, and no amount of sleep will help me break through the clouds.  My limbs feel heavy, my head feels cloudy, and I have a general sleepiness throughout the day.  I haven’t understood why exactly this body fog sensation occurs, but the more people I talk to with lupus, the more common I understand this symptom to be.  And it makes some of the most simple daily tasks (like driving, cooking, or even showering) a challenge.  When I complain about my fatigue, people always give me their “quick fatigue cure” secrets- from caffeine to exercise to power naps… but none of these things cure my fog-like state.  So how do we cope with this draining fatigue?

I’m learning that the most important thing we can do to mitigate fatigue is to take it SLOW.  As I’ve stated before, it’s quite unlike my personality to sit around all day.  I love to be productive, active, and social.  So learning to take things slow as a lupus patient has been extremely difficult for me.  I’m beginning to live by a new rule: “Choose One Thing”.  That is, I know that I have a finite amount of energy in any given day.  And if I overdo it today, I’ll expend too much energy and won’t have any left over for tomorrow.  I tend to try to do A LOT on the days that I feel good.  But lately I’m reminding myself to just pick one activity that requires a substantial amount of energy for the day.  That might be going out to dinner, running errands, or cleaning the house.  But I know that I can’t do it all– and that’s ok.  When I have a long list of things to get done, it’s ok to only check off one item for the day.  When I go out with friends one night, it’s ok to rest the following day.  And when I simply don’t have the energy to do something, I shouldn’t push myself to do it … or I’ll pay for it later.

If I choose one activity that I want to do each day, I can pace myself to not use up too much energy at any given time.  Conserving energy is key to reducing autoimmune fatigue.  This is by far my biggest challenge with lupus.  Take it slow, don’t do too much, and don’t get down about needing to rest.  My adjustments to living with lupus are a work in progress.  Each time I overdo it with too much activity, I’m reminded of the importance of taking life slow.  Fighting fatigue can be a big obstacle, and I’m still working on discovering ways to reduce my chronic sleepiness.

Pack Your Bags… And All Your Meds.

Traveling with chronic illness can be a challenge.  Here are some tips for a safe and healthy summer vacation!

Summer means vacation.  And vacation means travel.  And I’ve been doing a lot of traveling this summer.  I’m coming up on my third trip this summer back to the east coast to visit family.  While I love all the traveling that summer brings, I’m finding it’s becoming more and more of a hassle to travel while coping with illness.  Traveling with lupus has become an art that I’m practicing– juggling the fine balance of activity and adventure with rest and relaxation.  I’m slowly learning how to travel with ease, how to pack correctly, and how to not overdo it too much on a trip to the point of exhaustion. Here some ways I’ve learned to travel with lupus wisely:

1.) Don’t pack light.  I’ve found that the more I have to make me comfortable on my trip, the easier traveling is on me.  Don’t be afraid to check a bag.  Got a pillow that you can’t sleep without?  Or a heating pad that gives you ultimate pain relief?  Bring it!

2.) Plan your meds carefully– and bring them in your carry-on! When I’m traveling, I shamelessly bring with me a large variety of medications.  Of course, I bring ample supply of all my normal daily prescription meds. But I also have my doctor get me a supply of “emergency” meds (steroids, antibiotics, pain killers, etc.) to have on hand– just in case.  There’s nothing worse than traveling mid-flare and being without the proper remedies.  Plan for the worst in advance!

3.) Be honest with your travel companions.  I’ve found that it’s best to be up-front with whoever you’re traveling with about your limitations.  Can’t walk very far?  Need 10 hours of sleep?  Can’t be in the sun?  Don’t be afraid to tell your travel buddies ahead of time.

4.) Bring snacks.  Because my diet is limited to gluten-free, vegetarian, dairy-free foods, I often find myself hungry when I travel.  Many of you may also have dietary restrictions due to your health or to medications you’re on.  And not all restaurants can be accommodating to our dietary needs.  I always have some snacks on me when traveling to avoid uncomfortable hunger.

5.) Don’t overdo it.  I typically have a list of sightseeing destinations, people I want to see, and things I want to do when on a trip.   But I’ve learned to be ok with not getting to everything on the list.  After all, it’s a vacation.  A vacation should include enough relaxation– and not too much running around and on-the-go tourism.  Don’t do so much you’ll end up sick halfway through the trip.

6.) Buy travel insurance.  I’ve learned the hard way that I need to buy travel insurance with every plane ticket I purchase.  Sometimes you may be too sick to travel during a scheduled trip– and that’s ok.  Traveling when you’re already flaring up can only make matters worse!  Rest up and enjoy the trip another time when you’re feeling up to it.

Don’t let illness prevent you from enjoying a vacation.  Just take the steps you need to be prepared.  Happy traveling!  🙂

Go For the Goal

It’s important to not loose sight of important life and career goals when dealing with a chronic illness!

Some may call it a type A personality, but I’ve always seen myself as a goal-setter and a go-getter.  I’ve pushed myself to my limits, and knew from a young age that I wanted to accomplish a lot in my career.  I’ve held myself to high standards and take a lot of pride in my work.  I used to always have a goal in mind– something that I was working towards or aiming to achieve. But after getting sick with an autoimmune disease, I (like many) started to loose sight of these goals.  For a long time, I felt like I didn’t know what I was working towards or where my career was headed.  My goals went from managing teaching several classes to just being able to get out of bed in the morning.  All the sudden my career and goals went out the window– and I was just hoping to make it through the day!  How did this happen so quickly?  I was left feeling exhausted and confused about how this illness had turned my life upside down so abruptly.

Today I happened to come across an amazing story of a woman with lupus who didn’t let her illness take away her goals.  She’s Shannon Boxx, and is competing tomorrow on the U.S. women’s soccer team at the London Olympics.  Despite dealing with lupus and all of its crazy curveballs it throws at her, she’s got a goal of winning a third Olympic gold medal.  Talk about a go-getter!  This woman is the definition of inspiration.  I was so delighted to hear the news about such a determined, strong-willed person who also copes with a chronic illness.  I’ll be cheering for the U.S. women’s soccer team in their big game tomorrow!

So I know many of us would be shooting a tad too high if we set the goal of an Olympic gold medal… but that doesn’t mean we can’t achieve everything we had dreamed of before sickness struck.  Maybe your goals have changed since your diagnosis.  Maybe it will take you longer to accomplish your goals than you had originally planned.  Or maybe your perspective on what goals are important shifted as you became sick.  Regardless of your health situation, it’s critical not to loose sight of your ambition.  Set realistic goals, be determined to reach them, and feel confident in your ability to work towards them.  I’m learning to adjust my goals and objectives to realistic ones in the midst of an unspeakably long lupus flare.  But, as Shannon Boxx argues, you can’t let lupus define who you are… or “use the disease as an excuse”.  It’s ok that the reality may be that lupus has slowed you down– but it can’t make your life come to a halt!