The Sick Community

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

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.

Ch-Ch-Ch-Chia!

Reaping the health benefits of this mesoamerican superfood.

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

Dumping the Diet Drinks

On my detox from diet drinks, I’ve found that the consequences of drinking artificial sweeteners is greater than I thought.

In my quest for health, I finally made a life-changing decision.  I had changed a lot about my lifestyle to start feeling healthy again– I began eating organic foods, I stuck to a plant-based diet, I ate local produce, and gave up most processed food.  But there was one processed food that I still clung to, that I couldn’t seem to give up.  It was always there in my fridge, and I constantly craved it.  It was diet soda.  I used to drink them daily– even multiple times a day.  I craved them, and felt I was doing my body a favor by satisfying my sweet craving, but with no calories.  But I began to ask myself something: Why am I drinking diet sodas?  I’m not overweight.  I’m not trying to loose weight.  I’m not on a ‘diet’.  Plus, they don’t even taste that good!  But, still, I couldn’t stop.  At that point I realized that this diet soda fixation I had was really more like an addiction.  Moreover, I have been a hypocrite for preaching the value of eating all natural, while I was secretly guzzling diet coke.  If I’m going to talk the talk, I need to walk the walk.

So, a few weeks ago, I opened my fridge and took out all the diet drinks.  I read the labels and found myself disgusted at all the chemicals in these drinks: aspartame, potassium benzoate, phosphoric acid… just to name a few on the diet coke label.  Yuck!  A word to the wise: If you don’t know what in the world the ingredients even are, then you probably shouldn’t be ingesting them!  I opened up all the cans, and poured them down the sink.  This was an important action for me to take– the feeling of literally dumping all those chemicals down the drain felt very cathartic.  I made the commitment to giving up on artificial sweeteners once and for all.

Since I’ve given up the diet drinks I’ve noticed some major transformations.  I have not experienced the “brain fog” that I was battling on a daily basis.  I’ve been able to concentrate and work with a clear mind, instead of the out-of-it feeling that I’d been accustomed to.  My energy level and attention span have definitely improved since cutting out the diet drinks.  Perhaps all of these changes are coincidental.  But I wouldn’t be surprised if part of my foggy-brained feeling was partially due to these beverages.

Additionally, I lost a few pounds since I stopped drinking diet sodas.  I find this to be particularly interesting, given that people drink these sodas because of their zero calorie content.  So why did I loose weight after stopping them?  After doing some research, I’ve found that people who consume diet sweeteners tend to overeat and crave more high-calorie foods.  They can actually stimulate the desire for more food– particularly refined carbohydrates.  So is it just coincidence that the incidence of obesity increased dramatically with the availability of artificial sweeteners?  It seems a little suspect to me.  Check out this article from Natural News: Diet Sweeteners Can Make You Sick and Fat.

Really, how bad can artificial sweeteners be for you?  In addition to making you crave more sugars, sweets, and other carbs, artificial sweeteners can cause: cancer, depression & other emotional disorders, digestive disorders, respiratory disease, inflammation, liver problems, and so much more.  The truth is, we just don’t even know the lasting impact these chemicals have on human beings.  Doctors and scientists have just begun to unravel the mess that artificial sweeteners have caused.  While the FDA claims that there is no scientific evidence linking artificial sweeteners to any of the aforementioned health issues, I wouldn’t take a chance.  From what I’ve read and personally experienced, they can be dangerous toxins: “These artificial sweeteners and flavor enhancers break down into highly toxic chemical agents that damage important regions of the body” (Natural News, 2012).

For me, making the decision to give up the diet drinks has been huge.  I only wish I had given them up years ago!  At any rate, it was an important move in the right direction for me.  I would highly suggest you try giving them up, too.  Check to make sure what you’re drinking doesn’t contain any of the following: Aspartame, Splenda, Saccharin, Sucralose, Neotame, or Acesulfame potassium.  If you’re looking to sweeten up your tea or coffee, try honey or raw cane sugar.  You don’t have to sacrifice flavor when giving up the splenda!

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.

Quiet Time

Discovering the importance of taking peaceful time to oneself amidst all of the activity in our lives.

It’s been a while since I’ve had the chance to post about my reflections and explorations with health and food.  I’ve been quite the busy lady over the past few weeks.  This past month has been one of the most eventful (and amazing) times of my life, and I finally now have some time to myself to reflect upon many major “life events”.  The multitude of life events was kicked off on 12/12/12, when my amazingly supportive and loving fiancé proposed!  We are engaged, and are beaming with joy to spend our lives together.  Following the engagement came the birth of my beautiful niece, as well as subsequent visits to the hospital to awe at her teeny tiny fingers and toes.  Then of course we had all of the shopping, parties, family gatherings, and festivities surrounding Christmas.  After the holiday, next on the event list was New Years.  During this time my fiancé and I took a trip up to northern California and marveled at the breathtaking Pacific coastline.  As if that wasn’t enough activity in three weeks, we then celebrated my birthday with  lots of friends and family.  And the final touch to all of this constant activity was the ongoing discussion of potential wedding plans and celebrations.  Needless to say, I was getting run down.

Breathing in some fresh air during my New Years vacation in Santa Cruz

While this past month has indeed been full of fun, laughter, and love… all this activity has left me feeling tired.  It’s no surprise that this much excitement and emotionally-charged activity has left me feeling super sluggish.  Though the holidays and all the accompanying events are very fun, we all know how draining and tiring they can be.  And those of us with chronic health issues tend to feel the post-holiday drag more than others.  So what’s the remedy?  As I always preach, eating right can certainly help.  Avoiding the candy and junk associated with parties and celebrations can help you avoid the zombie state.   This morning I added some much-needed fuel to my body by juicing the fruits and veggies from my CSA box.  What a way to start the day!

CSA fruits and veggies ready for juicing

Fresh juice for a Sunday morning breakfast

This weekend was the first weekend in a long time that I’ve been able to just stay home, relax, and take some time to myself.  And I noticed how valuable quiet is.  By quiet I mean: no TV, no music, no talking, no phones, and no computers.  I just sat in silence for a moment, and just took a few breaths.  It was reassuring to know that everything can seem so still and calm even when so much is going on around me.  So I’ve decided to add more “quiet time” into my schedule.  Just a moment to feel calm and quiet, and let my body relax.  As we know, taking time to rest is of utmost importance to coping with the stress and chaos of our daily lives.  So take a moment to be still, be calm, and be quiet.

Adapting a Plant-Based Diet

Here in Los Angeles, healthy vegan eating is becoming mainstream.

There are many things that I enjoy about my neighborhood here on the east side of Los Angeles… the palm trees, the constant sunshine, the city energy, and the diversity of cultures.  One of the things I love most about my neighborhood (and my city in general) is the accessibility of healthy plant-based foods.  Off the top of my head, I can think of six restaurants within walking distance of me that cater specifically to vegan food-lovers.  I can also walk to several other convenience stores, restaurants, and bakeries where I can pop in for a freshly-blended organic juice or a home-brewed kombucha.  I’m surrounded by others who share similar culinary tastes as me, and who are genuinely looking for healthy eats.

The fact that organic, local, and vegetarian food is so prevalent where I live makes eating for me much more enjoyable and easy.  In other places I’ve traveled to, I feel end up feeling stressed at meal time, as I search to find something other than a bowl of lettuce that I can eat.  I don’t feel this stress in Los Angeles, as there are so many gluten-free, vegan options available to me.  I was recently reading an article in The New York Times, called “Making Vegan a New Normal“.  The article describes exactly my point: vegan and vegetarian food in Los Angeles has become mainstream.  Not only do people here enjoy vegan food, they demand it.  New restaurants popping up in the city tend to fail unless they offer vegan and vegetarian items on the menu.  And, thankfully, eating vegan doesn’t mean going home hungry after eating a plate of lettuce and steamed broccoli.  A variety of hearty, flavorful dishes are now available to vegans.  Some of my local favorites include tempeh bacon with squash, quinoa tabouli, zucchini lasagna, and vegetable green curry.  I love that I have access to such delicious vegan-friendly entrees.

So as I continue to adapt and adjust to eating a plant-based diet, I look around me and realize how I lucky I am to live in a place where people routinely dine on fruits and veggies.  I am reminded to take advantage of the so-called “California cuisine” that is at my doorstep, and to continue to keep exploring all of the vegan treasures of the city.  And if you don’t live in an area where healthy, vegetarian options are readily available, maybe you could help get your community on board with healthy eating.  Speak to a manager at your local grocery store or favorite restaurant about your diet (whether it be gluten-free, dairy-free, vegetarian, etc.) and suggest they begin carrying a wider variety of options.  It can’t hurt to ask, and to become an advocate for your own healthy eating.

And if you live in Los Angeles, do take some time to check out a few of my favorite local vegan restaurants: Cru, Cafe Gratitude, Sage, Real Food Daily, Shojin

Tis the Season (For Sickness)

What do we do to cope with the changing seasons that bring fall and winter illness?

It’s that time of year again.  The leaves have fallen, the temperatures have cooled, and the holidays are upon us.  Personally, I love this time of year.  I love the crisp air, the holiday festivities, and an excuse to drink hot chocolate.  But what I don’t love about this time of year are the viruses and bacteria that seem to be passed so quickly from one person to the next.  I can’t seem to get away from the coughs and sneezes around me.  Being as I have a compromised immune system, I’m always hyperaware of those around me who are sick.  I notice the person in line in front of me at the grocery store with the sniffles, and the cough of a person next to me while sitting in the doctor’s office.  When you have problems with your immune system, you develop a heightened awareness of risk of illness.  It’s important to take precautions to prevent illness… but how is this possible during flu and cold season?

The fact of the matter is, sometimes its simply not possible to avoid illness.  Let’s face it, we all get sick.  As much as I lather up the antibacterial hand gel or avoid shaking hands, I still end up with sickness in the winter months.  I recently spent the Thanksgiving holiday with my family on the east coast.  Though I was delighted to fly back east for the holiday, I knew I would be exposed to a variety of germs while flying.  In fact, just before my trip, my doctor warned me about the health risks of traveling.  She had been pleased with my recent positive health improvements, and commented that in order to avoid getting sick I should “not go on any airplanes”.  Well, she was right.  48 hours after my flight I wound up with a fever, sore throat, and body aches.  I’m not a fan of visiting the doctor on vacation, but my ongoing Thanksgiving illness made the doctor unavoidable this holiday.  The doc diagnosed me with strep throat and put me back on yet another round of antibiotics.  … And just when I had been bragging about how much better I was feeling!

Even though I’ve been doing all the “right” things to get me on the track to health, I still often end up sick during this time of year.  Along with joy, gifts, and celebrations, the holidays also bring illness.  And it may be inevitable that we all get sick at some point throughout the holiday season.  Thus, at this time of year in particular, it’s important to treat your body well.  The holidays can get busy and stressful rather quickly, as traveling, shopping, and holiday events ensue.  But remember to take time to breathe, to eat well, and to limit the schedule of activities for each day.  And if you do get sick, listen to your body and rest.  After a few days of eating yummy Thanksgiving leftovers, some light exercise, and watching Christmas movies with my family, I’m pleased to be feeling much better.  It seems that treating myself to some needed R&R has helped ease my holiday sickness.

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!

Back to the Basics

An exploration in reworking and re-evaluating my treatment plan.

Remember how your grandmother gave you a spoon full of honey when you had a sore throat?  How your mom put a cold compress on your head when you had a fever?  Or how about when eating warm soup eased your cold symptoms?  Or that time when you were feeling stressed, and a simple deep breath helped alleviate your tension?  These are all natural remedies for illness and ailments.  These remedies I like to call “the basics”.  They have been around forever, and they work.  Sure, controlling  an autoimmune disease isn’t as simple as curing the common cold, but there are basic natural steps we can take to ease our symptoms.

Recently I posted about my renewed faith in modern medicine, and my anticipation to try an immunosuppressant drug (imuran) to control my lupus symptoms.  I was excited for the drug to take effect and to alleviate some of my aches and pains.  Unfortunately, the medication brought with it a fever, extreme weakness, body aches, dizziness, and more.  I found myself back in my least favorite of places: the emergency room.  Needless to say, the medication was not for me.  Nor are most medications, in fact.  This is not the first time my body has rejected a medication and brought me to the hospital.  My body is extremely sensitive to all drugs– and this one in particular.  My rheumatologist took me off of the med, and I have since been in a period of “detoxing” from all of its chemicals.  Additionally, I stopped taking all medications that aren’t absolutely necessary.  I’ve been weaning myself off of many medications to get myself stabilized and grounded.  I’ve been going back to the basics.

To me, the basics include a couple simple things: food and rest.  I’m attempting to maintain a dairy-free, gluten-free diet to reduce inflammation.  I’m limiting my alcohol consumption.  I’m beginning to purchase all organic produce to limit the chemicals in my body.  I’m budgeting 9-10 hours of my night for sleep.  I’m taking time to lay down and rest during the mid-day hours.  I’ve committed myself to restorative yoga classes at least twice a week.  I’m limiting my amount of sun exposure.  I’m taking caution to not pack my day with too many activities.  I’m using meditation to reduce stress.  And, finally, I’m journaling about my experiences.  I’ve been keeping track of what remedies I’m trying, and noting what works and what doesn’t.

So that’s it for now.  Good food and good rest is my treatment of choice.  And I’m pleased to announce that, at least for now, I’m seeing some improvements. 🙂

The Doctor Dilemma

How can we properly evaluate the quality of our medical care?  How do we know if a doctor is the right match?

Over the past few weeks, I’ve found myself spending a great deal of time at doctors’ offices.  In an effort to feel better, I’ve sought the help of a number of specialists.  Each time I see a new doctor, I am eager to find out what news they will provide me with about my illness, and what suggestions they will make about treatments.  Many doctors have given me great advice and guidance, while others have not.  Some doctors spend time with me, and show genuine concern for my health and list of questions.  Other doctors rush me out the door after my allotted 15 minute appointment time is up.  What I’m realizing is that it takes time, patience, and research to find a doctor that is the right fit for you.  I’ve gone through many doctors before I found a few that truly help and support me.  So what can you do to find the best doctor for you?

First off, it’s important to recognize that doctors are human beings.  They’re not gods by any means, and they can’t perform miracles.  I used to expect doctors to have all the answers, and to give me some sort of magical pill to cure all my aches and pains.  But that’s simply not realistic.  There is still much to be understood and discovered about autoimmune diseases, and I appreciate that my current rheumatologist has been honest that there are still a lot of mysteries to be solved in the world of autoimmune.  This brings me to my point that one of the main traits to look for in a doctor is honesty.  A doctor should be straightforward and truthful about your diagnosis, prognosis, and possible treatment plans.  If you feel that they may not be disclosing important information to you, then it’s time to find another doctor.

Another trait I look for in a doctor is empathy.  Does your doctor seem to genuinely care about your well-being?  Signs that your doctor is empathetic may include making eye contact when they speak to you, and spending adequate time with you to address all of your concerns.  Additionally, I find comfort in a doctor that is easy to talk to and is personable.  Too often I come across doctors with no personality, who look only at my lab results (instead of my face) when speaking to me.  Though these doctors may have medical degrees and credentials, they don’t understand how to interact with patients.  Try finding a doctor that you are comfortable talking to.

Certainly one of the most important aspects to consider when find a doctor is the quality of care of the office.  Is your doctor successfully treating your health problems?  Are they actively involving you in preventative care?  Do they provide ample information about your medical conditions?  All of these questions concern the quality of care you are receiving.  The ultimate goal in visiting any doctor is to cure and prevent illness.  If you feel that your doctor is accomplishing these goals, then you are on the right track.

The final aspect I consider when choosing a doctor is the helpfulness of the staff.  A helpful staff should make you feel comfortable and welcomed in the doctor’s office.  They should provide ease when trying to make an appointment.  They should be courteous and respectful when discussing medical information in person or over the phone.  Often times, the patient deals more with the doctor’s staff (receptionists, nurses, and assistants) than the doctor him/herself, so it’s important that the staff meets also meets your standards.

From the Wall Street Journal’s recent article: “Finding the Best Primary-Care Doctor for You“

Having a chronic illness and trying to find adequate medical care can be a frustrating process.  Be patient that you will find a good team of doctors to meet your medical needs.  Remember that you are your best advocate in this process.  Take the time to research doctors in your area (or even outside of your area), and  know that it may take many attempts to find the one who is right for you.  Also, don’t be afraid to fight with your insurance company to help find you the right doctor.  Just because you might have an HMO plan doesn’t necessarily have to limit your options.  I have an HMO plan, and was able to change my medical group in order to get in with doctors I felt comfortable with.  Just have patience that this could be a lengthy process.  Keep researching, keep fighting, and don’t stop until you feel you’re getting the quality of care you deserve.