Tag Archives: autoimmune disease

Finding Balance while Living with Autoimmune Related Conditions

March is autoimmune disease awareness month.

For those of you who know or follow me, you are likely well aware that living healthful and well is a key focus area for both my personal life and professional niche.  This may be in spite of having chronic conditions or underlying physiological dysfunction.  The fact that I carry my own diagnosis and am a fit to “autoimmune wellness warrior” can present certain idiosyncracies to maintaining balance.

Professionally, I work with people to live better, well, and most healthful, while personally, I am often holding on tight while navigating through turbulent, bumpy roads all while working to keep it all together!  Naturally, it can give me greater ability to express empathy, but it can also leave me feeling that I have a massive case of imposter syndrome.

A few insights on autoimmune related conditions are as follows (more can be found via the AARDA):

  • Approximately 50 million Americans are afflicted with an autoimmune-related condition.
  • There are over 80 conditions confirmed associated with underlying autoimmune dysfunction and the list is growing.
  • Women are disproportionately affected.
  • Late or misdiagnosis has been common.
  • Despite supportive evidence for lifestyle interventions significantly influencing outcomes, immunosuppressant treatment is still common yet may result in devastating long-term side effects.
  • The body of research centered on effects from environmental factors and the manifestation of autoimmune-related conditions is mounting.

For people who are able to put autoimmune conditions into remission, a 3-5 year timeline is common.  This is typically curated through a “lifestyle-medicine” approach which will involve a range of shifts including dietary approaches, relationship with sleep and stress, reduction in adverse environmental exposures where possible, and a potential range of therapeutic related approaches to nudge the body closer to healthful homeostasis.  For many of us, like myself, complete remission may not be realistic, but a significant reduction in the severity could be possible.  Therefore, 5 years not just after a diagnosis, but from the time in which notable lifestyle changes are begun is kind of a relevant time to do a robust check-in.

This spring will mark 5 years since I have had a formal diagnosis for autoimmune related conditions, (which often cluster and may come with secondary conditions that are considered to be present as a result of the specific autoimmune condition(s) manifestation).  In many ways, things are going relatively well.  There may still be an occasional flare-up or mishap, but many of my symptoms have been significantly reduced, my antibody labs came back the best results I have seen since I started this journey, and I have indoctrinated the lifestyle changes to become my new normal without much mental anguish to think it all through.

Which brings up a good point.  As much as these conditions are physiological, there is also a chaotic dance in store for the mindset.  However, although sometimes haphazard with certain unexpected variables, it’s still one that can be orchestrated.  Therefore, a few wellness tips can also be rather impactful!

Manage expectations through letting go of perfect.  “Well” does not mean perfect.  Hey type A-ers, I’m talking even a little more closely to you.  Systems and plans can be fantastic for staying on track, but remaining flexible while having a sense of humor can also go a long way!

It’s ok to say No.  Not everyone is going to understand what we are dealing with.  It’s not personal, educate when it’s appropriate, but otherwise, let it go.  Time and energy are much better spent on other areas in which we can enthusiastically say “yes”.

Focus on the unintentional gifts.  For me, I have significantly more knowledge and perspective than I would have had otherwise.  Also, I have been able to shift various focus and responsibility to a more meaningful purpose.

A few other bloggers’ posts that are a little similar to this one that may provide further insight and inspiration.

Autoimmune Disease Warriors, About Us

The Advantages of Disadvantages

Why I Am Not an Autoimmune Warrior

 

Photo by Marion Michele on Unsplash

The ‘Real’ Spring Clean

How do you define clean?

I hope to challenge your definition and for those in which I’m “speaking to the choir”, let’s sing!

Toxins are a result of man-made chemicals as well as naturally occurring.  Repetitive low-dose exposure to these compounds over time, such as phthalates, is what we refer with the terms “toxic load” or “burden”.  Collective dose has been a subjective topic within the scientific community.  However, there is a supportive body of evidence for associations between toxic exposures and the onset of a whole host of chronic diseases from autoimmune to cancers.  Children, pregnant women, and older aged adults are significantly more sensitive and vulnerable to toxin exposure such as those from pesticides.  Substrates with toxicity can be found in consumer products, food, and the environment in which we engage.

Do I have your attention?

O.k., now “what the heck can you do about it?“…

I cordially invite you to redefine your spring clean.  Conduct an intervention for yourself by focusing on ridding yourself of the ugly (cleanse) and shifting to more healthful alternatives.  The easiest changes will be in your home.  Pick a room to start with and get going.  (Hint, this will likely be your kitchen and/or bathroom).

Primary areas in which you can easily make shifts;

  1. Personal Care – Color, fragrance, additives, synthetic chemicals that few would accurately pronounce… you name it.  Each of these are areas to become keen on when assessing potential toxic load.
  2. Cleaning Products – Besides data on unintentional poisoning leading to adverse outcomes including death, the average US household cleaner contributes to indoor air pollution.  These products carry rather harsh hazard warnings, such as “Danger”, “Warning”, or “Caution”, for a reason.  Yet, natural alternatives do not need any of this.  Consider the alternatives.
  3. Food –
    • How many ingredients are in a piece of produce?  No, this is not a trick question.  Answer:  ONE!  A follow up question, do you know how that piece of produce was grown, ripened, and shipped?
    • How many ingredients are in the average processed food item?  To be honest, I could not find this data, but I’m certain the average number is over 5!  Whole-food recipes, ie products of resulting in multiples of one, are not what I’m referring to here.  I’m calling out additives, derivatives, isolations, etc.  Many nutritionists suggest to shop by “Five or Fewer”. By this, we mean if it has more than five ingredients, don’t buy it.
    • Finally, pesticide resin, which can also be systemic, and potential harmful exposures picked up during shipping and transit are also variables to take into account.  The Environmental Working Group’s Dirty Dozen and Clean 15 lists provide preliminary guidance (see below).
    • BONUS – don’t forget to check out your food storage, packaging, and cookware options, especially those used for heated items and/or those holding fat based items.

A special note on fragrances – In some cases, natural derivatives can contribute to the scent of an item, however, often the term on a product label is code for chemical concoction and full disclosure is not legally required.

Changes in each of the areas can parallel each other.  We often think of health as diet and fitness and the term “clean living” has been coined to food.  However, our health is impacted by many more variables each of which can be addressed in a “Spring Clean”.  Healthful shifts will incorporate reasonable reduction and realistic transitions.

What about communal spaces?

On a public health landscape, we certainly have work to do.  However, the Centers for Disease Control and Prevention does incorporate this area into their healthy workplace initiatives and can be leveraged as a resource for change within communal spaces.

Other Resources;

Clean 15-Dirty Dozen

Wellness Wednesday: Autoimmune Disease Awareness

March serves as an awareness month for Autoimmune Disease and Related Conditions.  Although this serves as a wellness blog, advocacy and awareness for conditions, particularly those that may be under-served in traditional medical models, are still areas I feel are important to incorporate.  Due to personal and professional impact, I’m including this into my blog this month.

See the bottom of the post for another way in which you can provide support. 

I credit the New Yorker for publishing a few personal accounts over the last few years highlighting path or circumstances from those living with autoimmune related conditions.  The 2013 article “What’s Wrong With Me?” by Meghan O’Rourke provides an insightful look into a journey with autoimmune dysfunction.  Those with any number of these conditions will certainly find clear areas of relation to her story.

An interesting caveat presented in “What’s Wrong With Me?” is the fact that people may not understand how best to support research and advocacy for these conditions.  Within our system of care and related infrastructure, there is often a misguided focus on specialties or specific disease classifications.  In this case, those would be examples such as lupus, celiac, Crohn’s disease, MS (multiple sclerosis), rheumatoid arthritis, and those affecting thyroid regulation such as Hashimoto’s or Graves’ disease.

However, there are upwards of 100 conditions that can be the result of a harmful autoimmunity state in the body.  (The Autoimmune Related Diseases Association maintains an A to Z list).  Many of which have overlap and/or common root causes.  Also, manifestation of an autoimmune condition can vary from one person to the next and is thought to be considerate of “bio-indviduality.”

Unfortunately, variability in manifestation can contribute to difficulty with regards to timely diagnosis.  Diagnosis is typically handled through testing and measurement of autoantibodies, which are used as clinical markers to classify or predict a disease (Eggert, Zettl, & Neeck, 2010).  Symptoms typically present as vague and could include fatigue, chronic low-grade fevers, muscle and joint aches, or rashes (Campbell, 2014).

Leading up to a diagnosis, is a multi-factorial “soup”, so to speak, of circumstances.  A genetic disposition may be present, but it is thought that lifetime exposures play a role in impacting whether or not a condition manifests or not. “Exposures” encompasses a range from environmental, physical or mental stress, and infectious agents.  In addition, onset of a condition could be indicative of underlying conditions such as intestinal permeability or excessive chronic inflammation (Campbell, 2014).

This further leads us to “chicken vs egg” discussions in science and it also presents a paradigm shift in how we are addressing the category of disease.  In this case “autoimmunity” versus a specific diagnosis resulting from autoimmune dysfunction.  However, in actuality, underlying inflammation or cellular dysfunction versus a specific diagnosis of any kind.

For the would be autoimmune related diseases and conditions supporter, this could present some confusion.  Three simple suggestions are as follows;

Understand care models within systems and those of independent health practitioners.  If your knowledge isn’t great, take a pause on donating money.  By all means I’m not promoting a withdrawal of financial support, but do some homework and don’t get distracted by fancy color schemes, ribbons, and other advocacy tactics.

Talk to those living with these conditions or reliable practitioners that treat them.  I suggest this mainly to understand the layers to the conditions.  To further illustrate this, consider the example of Tom O’Bryan.  His team recently broadcasted an impactful series Betrayal, which detailed many stories of those with autoimmune related conditions.  Purchases of the program went to support for children living with Celiac who may be experiencing mental/emotional stress due to social isolation.  Clearly this is a top of mind problem for the children or the loved ones that support them, but how many people external to the spectrum would have thought of this?  …and, are the research and advocacy agencies addressing these issues with fair weight?

Support those with conditions in other ways, particularly in the mental/emotional area and lifestyle behavior spectrum.  Response to a diagnosis may require significant behavior change and due diligence will be needed.  This may present avenues of going against the norm, for example, going to a super bowl party and replacing crock pot nacho cheese with some sort of super food just so there is something on the table.  Human behavior change is a tough cookie and social support matters!  Be sure to not make a big deal about it putting the person on the spot, but find ways to be inclusive of the person.

The list can easily continue.  Feel free to share interesting projects for which you are aware in the comments.  As a final note, I will be making a relevant donation at the conclusion of the month.  I’m leveraging income from my Juice Plus and Tower Garden business to make this happen.  Please visit my websites for further information or set up a call with me to learn more.  I’ll include a follow up post about this in April.

REFERENCES:

American Autoimmune Related Diseases Association (2014-2016). Autoimmune Info, List of Diseases. Retrieved 2016, from AARDA – American Autoimmune Related Diseases Association: http://www.aarda.org/disease-list/.

Campbell, A.W. (2014). Autoimmunity and the Gut. Autoimmune Diseases, 2014, 12. Retrieved 2016, from http://doi.org/10.1155/2014/152428.

Eggert, M. Z., Zettle, U.K., & Neeck, G. (2010, May). Autoantibodies in autoimmune diseases. Current Pharmaceutical Design, 16(14), 1634-1643.

O’Rourke, M.  (2013, Aug 26).  What’s Wrong With Me?  The New Yorker.  Retrieved 2017, from http://www.newyorker.com/magazine/2013/08/26/whats-wrong-with-me.

 

 

Not Just Another Weight Loss Story: Journey Through Integrative Care

Guess what?  “I’ve lost weight!”

Isn’t there a slight bitter sweet element when your social media feed reflects all kinds of before and after pictures for those who have taken off a few pounds.  In one sentiment, it’s a “woo hoo” for that person while another reaction is more likely “grumble, grumble… skip over it”, correct?

Weight loss is a huge business.  Let me say that again “HUGE”.  A few statistics I have used in writing business cases for the US market include;

  • Over 1/3 of children, including those of teenage years, are classified as overweight or obese (Ogden, et al, 2012).
  • According to the Institute for the Psychology of Eating, 108 million Americans are on a diet and the overwhelming trend is for those who diet to gain back the weight in under a year (2016).

Furthermore, chronic disease data associated to overweight and obesity also reflect data such as follows;

  • Worldwide diabetes prevalence is estimated at 347 million and, within this total, 1 in 10 adults are affected further increasing their risk for cardiovascular related diseases or incidents, such as stroke (Danaei, et al, 2011 & World Health Organization, 2013). Cardiovascular disease is the leading cause of death, while mental health disorders are among the top 20 leading causes of disability worldwide (World Health Organization, 2013).
  • An estimated 80% of cardiovascular diseases and 33% of cancers can be prevented through lifestyle measures alone. Specific cancers, such as cervical (100%) and lung (71%), have even better odds of prevention (World Health Organization, 2013 & Ott, et al, 2011).

While a snap shot of autoimmune conditions in the US is reflected by the following;

  • Conditions associated to autoimmunity have escalated over 23 million in America surpassing prevalence rates for cancers and heart diseases (U.S. Department of Health & Human Services, 2016).
  • Autoimmune disease and conditions represents an estimate $100 billion in direct health care costs annually (American Autoimmune Related Diseases Association, 2014-2016).

Marketers may or may not be savvy to root causes to disease or conditions, but they definitely know the numbers that can further support a business.  In addition, those representing “weight loss” products are encouraged to flaunt their results as a social media marketing strategy.  The reality is few of these supplementary products arrive to market with the foundation of independent, peer-reviewed and well-designed clinical studies in humans.  As a health researcher, I have been well aware of this.

My story is a little bit different.  Growing up, I was always the skinny kid.  In fact, in high school, I was repeatedly “checked in on” for being anorexic when the reality was I simply did not put on excess weight despite how I ate.  To some, this may have seemed fortunate.

However, my status significantly changed in my late 20’s and I was subsequently diagnosed with an under-active thyroid.  I had studied nutritional science for many years, remained active, and was trained in fitness management.  Upon diagnosis, I followed standard care protocol and began taking synthetic thyroid supplementation (levothyroxine).  Yet, I could not develop a plan through eating and physical activity to maintain consistent weight loss or consistency in my body weight at all.  I sought help from other trainers and professionals assuming I was missing something.  However, as it seemed, no one could help me.

In reality, I was missing something.  My body had begun autoimmune dysfunction.  As many of you already know, a few years ago, I was preliminary diagnosed as Mixed Connective Tissue Disease and a positive ANA, then later confirmed Hashimoto’s Thyroiditis.

…and so, my journey down topic specific health research around autoimmune conditions and respective care protocols took flight.  I quickly transitioned to integrative care approaches for my own treatment and became both a student and an active participant.

Over the last few years, I have learned seemingly a lifetime’s scope of knowledge providing much more depth to any academic degree or credential I hold.  I have learned how to truly support and nourish my body through lifestyle protocols.

In some cases, this does require appropriate, scientifically supported whole-food nutrition supplementation.  This can further boost specific phytochemical activity which initiates a whole host of activity beginning at the cellular level.  (Reach out to me personally for further information).

This spring, I will celebrate my 3-year anniversary of formal diagnosis, but I am also happy to announce that have I returned to my ideal weight and been able to maintain it.  There have been no gimmicks or “calorie busting” products.  The results have been a combination of solid self-advocacy for my health, building a professional team of support, using sound, scientific driven decision making for lifestyle choices (while making them), and, most importantly, having a positive attitude.  Also, as a practitioner, I began training in integrative and functional approaches.

Late last year, I started to feel more energetic in endurance activity.  It had been quite some time since I felt this.  It nearly whomped me over the head one day when a work out I would have previously dreaded the process of getting through was seemingly easier.  As a former athlete and life-long fitness enthusiast, this made me feel a little more like “me” again.

Going forward in 2017, I hope to get a little more sculpt and tone back for a more visible transformation.  I am also looking forward to extending my support to help more people.  Keep following me as I work to do this!

References:

American Autoimmune Related Disease Association. (2014-2016). Autoimmune Info, The Common Thread. Retrieved from AARDA – American Autoimmune Related Diseases Association: http://www.aarda.org/autoimmune-information/the-common-thread/.

Danaei, G. et al. (2011, Jul 2). National, regional, and global trends in fasting plasma glucose and diabetes prevalence since 1980: systematic analysis of health examination surveys and epidemiological studies with 370 country-years and 2·7 million participants. Lancet, 378(9785), 31-40. doi:10.1016/S0140-6736(11)60679-X.

Institute for the Psychology of Eating. (2016). Skyrocket Your Career by Joining the World’s Most Advanced Movement In Health and Nutrition Coaching. Retrieved from Institute for the Psychology of Eating, The World’s Largest School in Nutritional Psychology: http://lp.psychologyofeating.com/fd-epcc-sales-page/?utm_campaign=ACTIVE-OPT-INS(all)::EPCC-FunnelDash-Funnel-(4-Part-Video-Series+Report+Webinar+Push-to-Apply+Push-to-Enroll-$1000-off)&utm_medium=email&utm_source=email-automated&utm_content=consult-confi.

Ogden, C. L. et al. (2012, Feb 1). Prevalence of obesity and trends in body mass index among US children and adolescents, 1999-2010. Journal of American Medical Association, 307(5), 483-490. doi:10.1001/jama.2012.40.

Ott, J. J. et al. (2011, Jun). Global cancer incidence and mortality caused by behavior and infection. Journal of Public Health, 33(2), 223-233. doi:10.1093/pubmed/fdq076.

US Department of Health & Human Services. (2016, Jan 5). Health & Research Topics, Autoimmune Diseases. Retrieved from National Institutes of Health, National Institute of Allergy and Infectious Diseases: http://www.niaid.nih.gov/topics/autoimmune/pages/default.aspx.

World Health Organization, The (WHO). (2013). 10 Facts of the State of Global Health. Retrieved from http://www.who.int/features/factfiles/global_burden/facts/en/index3.html.

Strength of Community and Biba Lips

As a health professional who took a meandering path, one section of the trail was the unexpected diagnosis with autoimmune disease.  Little did I know at the time that there are over 80 of them!  According to the American Autoimmune Related Disease Association, approximately 50 million Americans live with at least one autoimmune diagnosis.  Out of that 50 million, approximately 75% are women (2015).

This personal path took a look at food, environment, and genetics under a critical lens, perhaps even more closely than I had the opportunity to gage throughout a Master of Public Health program.  Last week I had the pleasure to attend a local, community event hosted by Noktivo Natural Nail Salon.  Noktivo is run by a dynamic young professional who has taken a stand against a so called “dirty industry”.

At this event I met many outstanding woman representing “clean” beauty products.  One stood out to me due to personal connection.  The dynamic owner and founder of Biba Lips told me of her diagnosis of Hashimoto’s.  This is an autoimmune disease in which the body attacks the thyroid.  It is one of personal connection to me as I have observed the diagnosis in both family members and friends.  It is what I would refer to as an “ugly” disease that can cause extreme fatigue and sluggishness as well as depletion of skin and hair quality, among many other things.

Despite the negative side of this disease, I was pleasantly greeted by a most favorable outcome of this diagnosis.  Common to my path, beauty products and the chemical and/or toxic nature had been brought to the forefront of the discussion within overall health and wellness.  The owner excitedly told me about her desire for keeping a little glamour in her life and, as a result, the concept for Biba Lips, a cleaner, healthier cosmetic option emerged.

The empowerment she felt radiated in her smile, words, and facial expressions.  It was both delightful and motivating.  Therefore, I devote this blog post to her.  I give a huge shot out and “you go girl”.  It is also a significant reminder of the strength of community.  As a student, I focused on community health.  It is nearly impossible to measure the strength of community ties to health outcomes (although we try).  This example is certainly a “proof of concept” for me!

References:

Autoimmune Disease In Women.  (2015).  Retrieved from http://www.aarda.org/autoimmune-information/autoimmune-disease-in-women/.

Other Mentions:

Biba Cosmetics LLC, http://www.bibalips.com

Noktivo Natural Nail Spa, http://www.noktivo.com