Sunday, August 26, 2012

Mindfulness & Diligence: Be Your Own Advocate


I thought I might deviate from my usual blog post format and just free write about some things that have been on my mind recently, not just about Celiac Disease or Graves Disease but living-well in general.  So often, and just this week, I was reminded that because there is so much misinformation circulating about living a ‘healthy’ lifestyle, basic and correct information regarding ways to prevent disease and manage already existing diseases well, is lost in the shuffle. 
This misinformation, I believe, has contributed to the serious lack of awareness about autoimmune diseases.  Even some of the most educated and well-respected practitioners, with whom I have had the pleasure of working, have caught me off gaurd with completely inaccurate statements about autoimmune diseases specifically Celiac.  For a long time I had little patience for health practitioners in ‘prestigious’ positions who are uneducated about such topics, but I’ve come to realize that there is a whole host of reasons that contribute to their (and our) lack of knowledge in these areas.
 While there are a number of reasons that contribute to poor health outcomes (from the natural environment to the environment we’ve built, lack of research, lack of resources, etc.), I believe that one of the most significant ways we can impact our ‘health’ culture (and subsequently our health outcomes) and the wellbeing of future generations is to spark discussion and encourage an ongoing dialogue about it. 
The following are 10 points I hope you’ll keep in mind in your daily living, but also when approaching friends and family during times of illness, as well as in situations that require a visit with a health practitioner.
1.       This may sound funny but, be mindful of your body, mind and spirit. When is the last time you stopped and thought about how you were feeling or how you are breathing? What is on your mind? Take a minute to sit-up and breathe…be mindful of these things everyday, you will be astonished at what a difference this makes in your demeanor, and what you will discover about your overall health both physical and emotional.

2.       Engage others in conversation; ask them questions; listen. Again, this may sound silly, but you will often learn that what you thought was ‘normal’ actually isn’t or that what you thought was something no one else could relate to is actually something so many can!

3.       Write things down! My mom is a Registered Nurse (and a very good one at that!) and I’ll never forget, after having moved out on my own, unpacking the “Lacey’s Medical File” folder she gave me.  Not only was it another reminder that she loved and cared about me enough to be actively engaged in my health (modeling good health behaviors is the BEST gift you can give your children), but it narrated my health history in a way that allowed me, as an adult, to look back and see (for myself) my health history.  Since then, I write everything down and it has made trips to the doctor much more efficient.  I, too, love when I meet with clients and they have a journal or a file…I can do my best work then; I rather have too much information than too little.
 

One of my mom's handwritten notes that I found in my file. You can see that her work and diligence lead to both of my diagnoses. Pay special attention to her notes on the allergy testing she performed: milk & wheat!
 
4.       I have met a number of people that suffer from what I call the “One & Done Autoimmune Syndrome.” They are diagnosed with an autoimmune disease and put all of their effort in to managing that disease and never give a second thought to other potential issues.  If you’ve been diagnosed with an autoimmune disease, you have a greater chance of developing other autoimmune diseases. For instance, Thyroid Disease (Graves or Hashimotos) is very common in people with Type 1 Diabetes Mellitus, and Celiac Disease is common with both Thyroid Diseases and Type 1 Diabetes.  Be aware of other autoimmune diseases and their symptoms as well; Lupus, Multiple Sclerosis, Rheumatoid Arthritis, etc. Always be mindful about symptoms that may not clear after proper management of your disease and aware of new symptoms that occur.  Keep record of these things in your file and update your physicians about them at each visit.

5.       Because autoimmune diseases effect homeostasis (the ideal/balanced state of the body) they all share a number of the same non-descript symptoms; Thus, they are often misdiagnosed. For example, Celiac Disease is often misdiagnosed as Crohns Disease.  While both are autoimmune and require changes in the types of food one eats, managing a diet for Crohns does not require gluten to be removed. People are often frustrated that symptoms do not subside and damage from the unmanaged Celiac continues. Again, be aware of your symptoms, record changes or symptoms that do not change; discuss with others and your physician.

6.       Physicians are your partners, not your parents.  By that I mean you are the ultimate decision maker when it comes to your health, so take that responsibility seriously.  Ask your physician questions…if you go for a doctor’s visit and leave without having asked one question, you either know everything there is to know about the human body and disease or you just aren’t actively engaged in your own health and wellness; I’d be willing to bet it isn’t that first one.  If you think they’ve overlooked something and you would like them to investigate it, tell them…they work for you!
As I got older and was able to drive myself to appointments, my mom and dad always requested that I bring home a note from the physician. That was a smart move because I always forgot something they would tell me!
 
7.       Be honest and open with your practitioners. They are required by law to keep all of your information confidential.  There is also no need to be embarrassed about symptoms that you may feel uncomfortable talking about. You are not the first patient to tell them about the diarrhea you’ve had or the skin rash that’s spread to your ‘bits-n-pieces!’ You know yourself best, so please share any and all information about your health, health history, family history, etc. with your health professionals.  The best practitioners will take all of that in to account to get the most comprehensive view of who you are and can make the most accurate diagnoses that way.

8.       Be honest with yourself about how you are feeling.  It is very easy to overlook symptoms because you write them off as your ‘normal.’ While fear of ‘what it could be’ often prevents people from being aware of these issues and checking in with a physician, the consequences of not being diligent about these matters are much worse than managing them in the early stages.

9.       While the body is often described as a machine, its NOT.  Your ‘parts’ cannot be replaced like a cracked iphone screen and expected to rebound and move-on with no repercussion or consequence.  Do not place unreasonable restrictions or demands on yourself and your body, but do not neglect or ignore it…Garbage-in, Garbage-out!

10.   Finally, understand that your body is dynamic; always changing, adapting. Challenge your body with exercise and your mind with thought and adventure.  Your life is precious, treat your mind and body that way. 
 
I found a few of these notes in my file too :) Long waits in the doctor's office warrented my mom's need to scratch down some much needed shopping lists.
 

Be well,

Lacey

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