Good Blog Post

I found this blog post from another woman with endometriosis and while I DID NOT WRITE ANY PART OF IT, I feel it expresses some of the reasons I wanted to stop with the hormones I'm currently taking and part of the reason I want to give the Lupron a shot, such as the weight gain (and for me it is particularly my breast size, which seems to increase with every hormone shot)/fatigue/exercise stuff.  I do not have everything that is talking about in this post.  I do not have hypothyroidism, I have already maintained a healthy diet, and so far my cholesterol is just fine.  I have tried different types of exercise but that is something I enjoy so it is not the burden that it may be with people who do not feel the same way.  I recognized some of the medications she mentions in bracket 1) and the reasons for taking them.  

That said, this is not an article about me.  if you want the link to take a look at the blog, it is on the right side of my blog or you can click this link: http://youarentcrazy.blogspot.com/2014/06/nothing-changes-if-nothing-changes.htmlThis is just another woman dealing with a bad case of endometriosis and her take on it.  Again, I AM NOT THE AUTHOR, nor do I know her:

Not A Fun Night

Ugh.  It's about 4:30 AM and I am having pain that just will not quit tonight.  It is frustrating and I know by this point tomorrow will be a pointless day that will just be me being exhausted.  I've had insomnia in the recent past, mostly when I get nervous about Mom's chemo or something to that effect, but tonight it's old school: straight up pain.  I am uncomfortable, feeling that wonderful endometriosis pelvic pain and remembering when this was my life 24/7.  I thought I'd be okay with the valium suppositories, but I guess I'm going to need more than one night to get back on track.  I feel like I've taken enough meds to stop the pain, but I also think I spread them out too much, not realizing how bad it was going to be.  I should have just doubled the dose when I went to bed 6 hours ago.  Sometimes it feels like medication that knocks me out in the middle of the day becomes ineffectual at night and I have never understood that.  Wish me luck with sleep, and be not at all surprised if I'm out of touch tomorrow (or today really).  I know that all the other EndoSisters out there know what it's like to get these days and they just suck.  Plain and simple, tonight sucks.  Pain sucks.  Pain not allowing me to go to sleep sucks.  And at this point my stupid medications not giving me the relief I need also suck.  I hope everyone I know is having a way better night and not reading this because you're curled up asleep in bed.  (Did I mention this sucks?)  I am so much less into positive thinking when I am exhausted.  But these nights happen sometimes.  Ignoring them is ignoring a big part of endometriosis so I'm sharing it with you... the not great, the bad, and the painful.  At this point most of you are closer to waking up than to having fallen asleep so I hope you have wonderful Fridays and I hope I sleep through your work!

Solstice Study

"The Pain You Feel Is Real, Even If You Can't See It."

That is the slogan for a commercial I saw on Tuesday, while my mom was sleeping and getting her chemo meds. I was watching tv when a commercial came on about endometriosis.  The fact that there is any commercial made me smile.  This one is about a new clinical trial but at least it gives a name to a disease people need more information about and also identified symptoms, which I think is greatly important for general knowledge.  The study is for the Solstice Study. If anyone is interested, click HERE. 

As I have stated before, I would LOVE for these studies to be successful.  I am so happy that they are available and I would love to sign up, but I am not willing to take the 50% chance of receiving a placebo, while still having to stop all hormone treatment.  I hope there are women who are at a point where they are able to participate because I think research is incredibly important for endometriosis.  I still can't wrap my head around the fact that this disease can only be concretely diagnosed via surgery.  It just seems crazy.  If I had an unlimited supply of money, my first priority would be better diagnostic tools and my second would be what this study is trying to do... find a better way to treat pain.  So I say to everyone involved in this study: GOOD LUCK!!! 

Amazon Smile

I don't know if many of you are aware of Amazon Smile.  I know I was not until I got a birthday gift from Amazon from my sister which included a card that said "A gift has been made in your name to the endometriosis society."  That was just as good as a gift and very cool!!  When I asked about it, she told me about Amazon Smile.  If you have an account with Amazon.com, you find a cause you care about, pick one of the societies or foundations associated with that cause, and when you purchase anything from Smile.Amazon.Com, a donation will be made to the charity or cause you have chosen.

Endometriosis: A Key to Healing Through Nutrition

(buy this book!)

I recently got a book from Amazon (here is the link) entitled Endometriosis: A Key to Healing Through Nutrition, written by Dian Shepperson Mills & Michael Vernon.  I had decided to look into nutrition, so this seemed like a good purchase for me.  I was expecting lots of recipes, in-depth diet tips, etc.  I have to say, it is not exactly what I had been expecting (there are some recipes), but I think it's a great book nonetheless.

If I were just beginning with endometriosis, this would be a book I would want to read.  It provides a solid basis of understanding to a lot of the early questions that I had.  It is written a lot like a textbook and I was impressed with the depth the book was able to go into while still covering the scope of the disease.  There are also helpful chapter summaries that will give you the important points covered in the chapter.  I have already used quite a lot of post-its on my copy!

Perfection Found

It's not often that I find a quote or picture that jumps out at me and makes me want to throw my fist in the air yelling, "YES!!!"  But this one did it for me.  I actually want a t-shirt made up with this image or slogan.  I thought seriously about going back and editing all of my posts to include this image somewhere in them, but that seemed a bit like overkill... plus if you already read those posts, you wouldn't see the wonderfulness that is this image.  I cannot express how perfect this is to me.  I can think of so many times, places, people where I WISH that I had uttered these simple words.  

Think I'm exaggerating about pain:

Think I need a new doctor because you've assessed my symptoms from your armchair or your computer and I'm just not progressing fast enough:

You get the picture.

Note From the Author

Author's Note: This is a blog about my journey with my disease.  I write about things in my life that affect me on that journey.  Many people have asked me more questions about my mother... I appreciate all the concern and love, but I will not be writing about other people in this forum.  I don't use names and I am not going to presume to write about anyone else.  Obviously there are life events that impact how I am feeling, how much pain I am having, the stress level of the day, etc.  I will write about or touch upon these things as they can cause problems for people with endometriosis.  My aunt's death, my mother's cancer... these things affect many people who love them and each person will react differently.  This blog, however, focuses solely on me, my struggle with endometriosis, learning to live with that, and my journey along the way.  I am not telling you how a death may have felt to anyone else, or how I would feel about a parent having cancer if I wasn't also sick.  Endometriosis colors everything in my world right now and I am telling my story and feelings from that perspective.  

My purpose here is: to educate as much as I can to help people understand endometriosis; to give myself a place to explore my feelings and reactions solely thinking about me; to try to connect with friends, loved ones or others with this disease because I think it is so important to be able to see that you are not alone, your suffering is real, and other women out there are able to empathize and understand your experience.

Thank you for reading.