Endometriosis, Hormone Imbalance, Souper Stars

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

Womens Hormone Restoration

hormone health problemI’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).