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!
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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