Apr 09

Jamee Miller: Creating a Normal Life While Dealing with Chronic Pain

501255ce-a708-4bf7-8f75-0f3ebaeeb368I’d love for you to meet Jamee – she writes over at “A New Kind of Normal” – a blog dedicated to life living with chronic illness. Not only is Jamee’s blog informative, it is beautiful both in its aesthetics and message -  life carries on through love, faith, family and support.

I  had originally contacted Jamee to discuss her journey with Endometriosis, however I feel that she is  also an excellent resource for those facing infertility, and those learning to advocate for themselves. Enjoy!

Follow Jamee on Twitter!

What impact has endometriosis had on your life?

Endometriosis has impacted my life in every way possible. I have had six surgeries total including a total hysterectomy at the age of 26. Despite every effort to manage my endometriosis from surgeries, treatments, and second/third/fourth opinions, I have started the disability process at the ripe old age of 32. The crippling pain is obviously made a huge impact on my life but the mental, social, and spiritual impacts of illness have also been a struggle.

I feel like I’ve lost a sense of control in my life. I have always liked to have a plan and for things to be structured but in the years since my diagnosis, I have had to let go of the perfectionist/Type-A aspects of my personality. I spent so much time beating myself up for not feeling like I wasn’t enough because I couldn’t do x,y, or z so I’ve had to relearn some ways of thinking about myself.

How important has your blog been to your experience as someone who lives with a chronic illness?

When I started blogging, I could have never imagined the impact that blogging has had on my life. It started as an outlet for my feelings while we were going through fertility treatments but I never had any idea that anyone would ever read it. But as time progressed, I discovered that there was an online community of warriors battling endometriosis/chronic illness just like I was. I was able to become a part of a community where someone could say “I understand” and mean it. The support I’ve received the in the years since has been amazing. I honestly do not know what I would have done without it. I would suggest for anyone facing endo (or any other chronic illness) to become a part of the online community, even if you don’t want to blog there is a place for support on Twitter/Facebook/Forums.

What do you wish everyone knew about endometriosis?

A hysterectomy is not a cure. I have been told so many times that because I’ve had a hysterectomy I should no longer be in pain because endometriosis cannot recur after a hysterectomy therefore my pain isn’t real. Also people don’t realize how a hysterectomy impacts so many aspects of your life. It isn’t just a physical surgery.

What are 3 things you wish people didn’t say to women with endometriosis?

1) I have bad cramps, too (endo is sooo much more than cramps).
2) Just have a hysterectomy (see question #3).
3)  At least its not cancer (So true but just because endometriosis isn’t terminal, it doesn’t make the pain less real and it had a HUGE impact on quality of life).

How important has being your own advocate  been in receiving appropriate treatment?

If I could give someone newly diagnosed any advice, it would be to become your own advocate. I have been blessed with having an amazing doctor from the start but by being my own advocate, I have been able to become an active participant in my treatment. I have researched treatments to know the pros and cons. I have been able to chose to get second opinions when necessary to move forward in treatments. It is so important and it is important to have your spouse/significant other to become an advocate as well to help in situations were you may not be able to advocate for yourself (after surgery, etc).

 

Permanent link to this article: http://www.hormonesoup.com/jamee-miller-life-chronic-pain/

Apr 09

Wordless Wednesday: OhhhKaye

I’ve admired Kaye Sedgwick’s work for some time.

In addition to being an artist, Kaye is an Endometriosis Warrior and campaigner and does a lot of work for Endometriosis charities like Endometriosis UK and The Endometriosis She Trust UK.

I wanted to share with you  a piece of work she did to support those who struggle with Endometriosis. I’ve included a snapshot of the piece (with her permission) but encourage you to visit her site to see it in its full glory!

It’s beautiful, and telling, isn’t it?

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By Kaye Sedgwick for Endometriosis UK
http://endometriosis-uk.org/

 

Follow Kaye on Twitter
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Permanent link to this article: http://www.hormonesoup.com/wordless-wednesday-ohhhkaye/

Apr 08

Reducing Endocrine Disruptors in Our House: Glass Bottles

Glass Water Bottles

I’ve done a lot of reading on endocrine disruptors and even blogged about making the choice to reduce the amount of endocrine disruptors that are in our home.  One of the big things I did was reduce plastic containers that stored our food. Although there has been quite a bit of headway made in reducing Bisphenol A in plastics, some may still contain phthalates, polyurethanes, polyacrylonitriles, and EA’s.  For me, the risk simply  isn’t worth it when there are other alternatives so readily available.

We avoid ALL plastics when we can – particularly 7, 6 & 3.  Even my children know  ”7, 6 and 3 are not for me”.   When we were getting 100% rid of “bad” plastics I taught my children how to identify the plastic by the symbol and number.

I am a firm believer that making positive lifestyle changes doesn’t need to take the joy, and the colour, out of life! These glass water bottles are proof of that!  The bottles (2, 3, 4 + 5) that have silicone coverings are kid friendly (although I’m reserving #5 for me!) because the silicone seal helps reduce breakage. I really like #1 + 2 for serving guests at the dinner table.

Watch for my post next week on fabulous kid friendly food containers that are both cute and endocrine system friendly!

Permanent link to this article: http://www.hormonesoup.com/reducing-endocrine-disruptors-house-glass-bottles/

Apr 07

Hormones & Fertility: My PCOS Challenge Radio Interview

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My journey to good hormone health has introduced me to wonderful, like-minded,  and caring people.

Sasha Ottey, the founder of PCOS Challenge,  is no different. In addition to being our Souper Star last month, she welcomed me to join her on her own radio program and speak on the topic of Hormone Health and Infertility.

I’d love for you to listen to my interview with Sasha! Explore her site while you’re  there. It is an excellent resource for women who manage PCOS on a regular basis.

Thank you for the opportunity to speak, Sasha! You are doing beautiful work!

 

 

Permanent link to this article: http://www.hormonesoup.com/hormones-fertility-pcos-challenge-radio-interview/

Apr 04

Souper Star: PCOS Diva Founder – Amy Medling

You’ve just got to meet Amy Medling! 

Amy Medling, CHC, is the founder of PCOSDiva.com, an online resource dedicated to helping women understand and manage the symptoms associated with Polycystic Ovarian Syndrome (PCOS). She studied holistic nutrition at the Institute of Integrative Nutrition and is a Certified Health Coach.

Diagnosed with PCOS 12 years ago, Amy thought she found relief when her doctor prescribed Metformin and the birth control pill. Instead of relief, she felt trapped inside a body that rejected these artificial treatments. This is when her Diva journey began.

She moved from a “why me?” self-pity state to a place of empowerment that ultimately led her to becoming a “PCOS Diva”. Her dedication and research produced a proven treatment plan that uses whole food, natural remedies, supplements, exercise, self-care, positive thinking and stress reduction to relieve and control PCOS symptoms.

Amy’s goal is to coach other women with PCOS, to find a body, mind and spirit balance that will have them proclaiming, “I’m a PCOS Diva too”!

MelaniesSouperStarLogoWhat inspired you to start your blog?

When I started successfully managing my PCOS naturally about 9 years ago, my OBGYN started referring women with PCOS who were not responding to conventional treatments to contact me (by phone) for help. I loved helping these women so much that my husband suggested that I start blogging about my research findings and PCOS information. I actually resisted at first, but then thought that maybe a blog was the way to help more women, so I started PCOS Diva in 2009.

Once women started following me, and began experiencing positive results using my PCOS protocol, I knew that this was my path in life. For me, it is so rewarding to help a woman with PCOS take on her health and life. I ended up going back to school in 2010 and became a Certified Health Coach through the Institute of Integrative Nutrition and can now help women in a greater way through my Meal Plans, Online Programs and Private Coaching.

Do you have any advice for women who are suddenly found in a position of needing to advocate for themselves?

10% of all women have PCOS and 50% remain undiagnosed. Women who suspect they have PCOS need to know  the symptoms, risks, labs to ask for, treatment options, as well as, how to get a diagnosis.  You will want to refer your doctor to the Rotterdam Criteria for diagnosis.  It is important to remember that your doctor works for you.  Most doctors are unaware of the success women with PCOS can have reducing symptoms just with lifestyle change.  Lifestyle modification should be first line therapy for PCOS.  Before using pharmaceutical drugs, that always have side effects, women with PCOS should look into changing diet and lifestyle.  I advocate a gluten-free, dairy-free or low-dairy, processed soy free, whole food based, balanced diet.  I also believe stress reduction, exercise, reducing environmental toxins, positive thinking and mindfulness is critical.

What have you found most surprising along your journey?

I am honestly amazed at how quickly women can heal their bodies.  It took several years for me, but I have worked with many women who we’re unable to get pregnant with pharmaceutical drugs, or lose weight, but as soon as they followed my plan, they were able to lose weight, achieve regular cycles within months, and many find themselves pregnant soon after.  Some of these women are just using my Meal Plans, or Jumpstart Program, while some are private clients, but once they understand how to nourish their body and bring balance back, health and fertility can be reclaimed.

Dealing with PCOS can be a roller coaster ride. How do you keep your spirits high?  Do you have specific tools in place for when your spirits get down?

So many women with PCOS are stuck in a negative glass half-empty outlook on life, or  what I call a “lack consciousness”.  This is a huge issue, as they focus on the negative side effects from PCOS. My clients must learn how to focus on gratitude, abundance,  and focus on what they can control: the food they eat, and not on what they cannot.  They must learn to live “in the moment” and not worry about the future. I believe that PCOS  is  a sign that our lives are out of balance.  That we need to create more harmony.  It’s a wake up call and the beginning of a journey that can truly help us become whole and happy, a journey that can change and transform our lives to ultimately lead us to live the life we were meant to live without PCOS holding us back.  Our physical body gets out of whack in order to draw attention to what is not working in our lives. Often we go through challenges and healings in our bodies that mirror the challenges and healings that are going on in our lives.

For me getting a PCOS diagnosis was one of  the best thing that ever happened to  me. Yes, I just said that  You might think I am crazy, but that is what it took to get my attention to begin changing my life in ways that have made it so much more joyful and meaningful.  For me it has been a gift.

Connect with Amy!
Facebook
Blog
Facebook
Twitter
You Tube
Google +
Instagram

Permanent link to this article: http://www.hormonesoup.com/souper-star-pcos-diva-founder-amy-medling/

Mar 28

Endometriosis is an Invisible Illness: An interview with Rachel Meeks

 

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Magnet Designed by DoILookSick.com

One of the things that I’d like to highlight about Endometriosis is that it is often called an “invisible disease”. General onlookers can’t see the pain being experienced, and albeit, are often not as supportive or understanding as they could be.

This is why I find the blog by Rachel Meeks so timely – her blog aptly titled “Do I Look Sick” discusses the challenges of diseases and disorders that aren’t quickly visible to others.

I sent Rachel a few questions to ask her about Endometriosis, the idea of invisible disease, and what life is like as a health advocate.

Enjoy!

My name is Rachel Meeks. I have Endometriosis, an incurable pain condition, and IBS, a digestive illness. I’m also a professional screenwriter and video editor, wife, and animal rescuer. Illness doesn’t define me but it’s just as much a part of me as my arms, legs, hair, and eyes.

 What does the term #EndoSister mean to you?

#Endosister means I’m not alone – I have a big family I never knew about.

Why is Endometriosis Awareness Month important to you?

There is nothing more important than awareness – self, spiritual, medical, all of it. We should always seek to understand others – March is a time when others try to understand me.


What do you wish everyone knew about life with endo?

Endo acts fake. Pain one minute, gone the next – But I’m not faking.


As a Health Advocate, what do you want to accomplish for those struggling with endo? 

Awareness is the most important thing. I want a world where we don’t have to hide endo. People understand, doctors study it,
that all comes from awareness.


What is missing from our system for those with invisible disease?

There’s too much division. We should all identify as Health Advocates but many go by disease. This leads to questioning what counts and what doesn’t, and an unnecessary struggle to find your home team. Unity!

Permanent link to this article: http://www.hormonesoup.com/endometriosis-invisible-illness-interview-rachel-meeks/

Mar 23

Ted Talk: Endocrine Disruptors, Estrogen & Your Baby

Grab a cup of tea and learn about hormone disruptors, clothing, cancer and disease.
Knowledge is power!

Permanent link to this article: http://www.hormonesoup.com/ted-talk-endocrine-disruptors-estrogen-baby/

Mar 19

Ted Talk: Working in Partnership with Your Body

There is so much important information in this Ted Talk video by Alisa Vitta that focuses on the importance of functional nutrition, understanding the endocrine system, and being a true partner with your body.

Enjoy!

Permanent link to this article: http://www.hormonesoup.com/ted-talk-working-partnership-body/

Mar 18

Souper Star: Katie Hogg From @_EndoHappy #EndometriosisAwarenessMonth

MelaniesSouperStarLogo
I’ve said it once, and I will continue to say it – one of the most fascinating parts of blogging in this space is having the opportunity to connect with women from around the world who have turned their struggles into advocacy and strength.

March is Endometriosis Awareness Month. It is a month dedicated to raising awareness about the struggles of women who suffer (often in silence) with this debilitating disease. It is also a month that women can reach out, connect, share resources, and support one another.

If you begin to connect on social media with women who have Endometriosis (“Endo”, for short) , you’ll most likely get pointed in one of many directions. The first being to the twitter handle@_EndoHappy - an  account dedicated to being a positive and inspiring place for women (and girls!) to visit.


Meet Katie Hogg, the creator behind @_EndoHappy

Endo Happy

Meet Katie Hogg! She is the creator of the twitter account @_Endo Happy – a positive place for women (and girls) to go for support and information about Endometriosis.

Katie started her account just two months after her Hysterectomy. She credits it as being “without a doubt, the one thing that has helped me through that very difficult time“.  Her goal is to give back to others and raise awareness about Endometriosis. Katie says that this has given meaning to the decades of living with the condition.

I had the chance to send her a quick Q&A  -  thank you Katie for taking the time out to answer a few questions!

What impact has Endometriosis had on your life?

Endometriosis has impacted my life in almost every way. The biggest I would say is financially, it has affected my ability to work full time, I’ve missed many days through sickness absences and recovery time from surgery resulting in a continued loss of income and associated debt.

What is most frustrating about having Endometriosis?

The most frustrating thing for me about having Endometriosis is the feeling of a lack of progress in your life, constant periods of sickness, surgery and recovery time result in not much time or energy to achieve anything else.

What do you wish for you, and others who suffer with Endo pain?

What I wish for myself and others in my life with endo pain is that we are treated both mentally and physically for our symptoms, the affects of Endometriosis are so much more than pain, Endometriosis needs to be recognised as a chronic illness!


What do you wish everyone knew about Endometriosis?

What I wish that everybody knew about Endometriosis is that it is both mentally and physically exhausting.

To connect with Katie, be sure to follow her on Twitter @_EndoHappy

 

Thanks Katie!

Permanent link to this article: http://www.hormonesoup.com/souper-star-endohappy/

Mar 17

What to Do if You Lack the Energy to Self-Advocate

Get Help Advocating for Yourself

Get Help Advocating for Yourself

Originally published August 21st, 2013

If you read my blog post, “I Have Three Words for You” - you’ll remember how I talked about my belief that getting proper healthcare means that you must advocate for yourself and become a vital part of your healing team.   But what if your health issues leave you unable to advocate for yourself?  Or, like one of my readers asked me – what if you don’t have the energy or strength to self-advocate, what can you do?  It’s a valid point and it’s easy to feel intimidated while sitting across from your doctor.

1.  Recruit a Trusted Friend or Family Member:

Your best strategy may be to enlist the help of someone else to advocate on your behalf. Have a trusted friend or family member learn about your medical condition and accompany you to appointments. This person can come prepared with a list of questions and issues to address with your health care provider.  Sometimes even the presence of a third party will cause physicians to be more thorough and attentive.  Even though I have an amazing relationship with my doctor I’ve brought my Beloved into an appointment with me when I was getting test results.  I didn’t want to forget any of my questions and wanted an extra set of ears listening for me.  I discovered that it’s actually empowering having two people on the opposite side of the doctor!

2.  Hire a Professional Health Advocate:

What if there is no one in your immediate circles that you feel comfortable asking for assistance, or if you feel that your medical issues are too in-depth for a personal ally to take on?  Did you know that you can hire a professional health advocate?  I had no idea this was even a profession until a couple of years ago.  Health advocates are also referred to as a patient advocates and are trained to create a dynamic in which patient-centered care is the main objective!  To be honest, it partly amazes me and partly saddens me.  It’s sad that our healthcare system is in such a state that a person even needs an advocate to help them navigate their healthcare, but at the same time, I’m delighted that there are professional people out there who can help.

they are professionals and charge fees obviously.  The good thing about a professional is that they have to adhere to a code of conduct that guarantees patient confidentiality. Their main concern is ensuring that your health and safety are the top priority in the care you receive, and that any values or beliefs that are important to you are respected. While they will be a strong ally working on your behalf, their role is one of guidance and support, not making medical decisions on your behalf. You can view the complete code of conduct for Health Advocates here.

If you are interested in hiring an advocate, there are many resources available online to help you locate a professional health advocate in your area.

Advo Connection offers a listing of professionals and a list of books and blogs that can be very helpful.

USA:  The Alliance of Professional Health Advocates  offers a database of its members & Patient Matters  offers many helpful links to resources.

Canada:  Help with Healthcare is one example of a Patient Advocacy Service

U.K.:  You can access a database of more than 2,000 resources at Patient.co.uk.

3. Inquire at Your Hospital or Medical Clinic – Many Have Patient Advocates on Staff:

I doubt you’d get the same level of assistance with this as you would by hiring your own independent patient advocate, but keep in mind that if you or someone you care about is in the hospital – many hospitals have a Patient Advocate on staff.  All hospitals in Ontario, for example, are mandated to have a patient advocate on staff. Don’t be afraid to ask to speak to someone in the Patient Relations office of your hospital.  The caveat here is obvious – although the patient advocate is a professional they work for the hospital so there has been criticism launched at people who fulfill this role as to where their allegiance truly lies.

4. Patient Groups 

If you’ve been diagnosed with a specific illness or belong to a specific patient group like one listed on Inspire’s website - many of these groups have forums and their own patient communities.  Patients getting online to discuss and share health information is referred to as “Social Health” and is truly a life changing phenomenon for some people.  A Patient Group is how e-Patient Dave found the cure for his cancer.  His doctor didn’t recommend the treatment he took, it was actually patients that he had connected with on a cancer forum who told him about the treatment and he’s alive today because of it.   I learned about progesterone use to prevent miscarriages from another woman who had suffered multiple miscarriages like me, my doctor never mentioned it and even when I asked he told me it was a placebo effect.   I have three beautiful children today thanks to my own self-advocacy and thanks to speaking to other women!

5.  Find a New Doctor:

Remember that while your doctor and other healthcare specialists you work with have a degree of professional experience that you don’t, this does not mean that you don’t have valuable information and input that deserves consideration.   A doctor that truly has your best interests at heart will welcome you to be a key player in your care.  If your doctor doesn’t welcome your input then maybe it is time to find a new doctor.  The truth of the matter is that enlightened doctors KNOW that empowered patients that participate in their own healthcare are more likely to “adhere” (I despise that word – ugh) to the treatment plan because they’ve actually had input!

Permanent link to this article: http://www.hormonesoup.com/if-you-dont-have-the-energy-to-self-advocate/

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