Words of Wisdom Wednesday
#endometriosis #drredwine #endostaging #fact
I have seen many people post that they were told they had stage V (5) Endo and I had to find out the truth. When I look for facts about this disease Dr. Redwine is the man to ask. Here is his response :
There is no Stage V.
Endometriosis of the lung, brain, diaphragm, or bowel are not included in the staging system of the AFS (now ASRM)
If a woman died of a brain tumor of endometriosis with no pelvic involvement, she would not even be stage 1.
So things have once again gone quiet around these parts. There are so many moving parts to life and this disease just seems to throw a wrench in it all. I’ve found it hard to come here and write because I feel like I’m constantly complaining and I don’t want you, my fellow endo warriors and supporters, to think of me as that person. I know that’s probably not the case, but I really want to inspire and be a face of someone who is fighting the good fight and recently, I haven’t felt that way. And so - the quiet. I am hoping to get myself together soon and come back better than ever.
To those of you who have sent along kind words, thank you. This blog is just as much for me as it is for all of us and knowing there are supporters out there makes the journey a little less lonely and a lot more bearable.
Words of Wisdom Wednesday
I got my response from the hospital from my visit last month. I can’t say I’m surprised that the doctor denied everything - I honestly didn’t expect anything different. What I can’t take is being accused of being a drug addict when I’m simply trying to manage my disease in the only way that the medical community has provided me. He didn’t simply “discuss the pitfalls of narcotic usage” with me that night, he flat out told me I was looking for more pills to “facilitate my addiction”. I never, ever want to waste anyone’s time but when I truly believe something is wrong, I want the doctor I’m seeing to do something besides brush me off as a crazy person with a history of endometriosis. I truly do not think that is too much to ask and certainly am shocked that the hospital’s administration would find a response like the one I received to be sufficient.
It’s moments like these that make me sad because it shows me just how far we have to go as a community. The doctors need to take some time to understand this condition and how to improve the quality of life of those suffering with it. They need to take a moment to listen, and really hear their patients because the truth is we all want to get to the same point - I would just like to get there together.
How many of you have had experiences like this?
I’m sorry to hear about your struggles. There is one thing that concerns me about your question. 970-1000 calories is far too little in a day! There is actually a misconception between eating less and losing weight. I didn’t realize this until I saw a nutritionist. When you don’t eat enough, your body goes into starvation mode and it turns all your calories into fat. It feels like it isn’t going to get enough nutrition so it stores everything to use later. It actually helps to boost metabolism by eating MORE, not less. It could also be influenced by your medication (I’m not familiar with the one you mentioned). While I am not a doctor, my advice to you is to eat healthy and don’t restrict your calorie intake so much! Healthy, nutritious and delicious food in the right quantities is important. You should also consult with your doctor and perhaps a nutritionist as well who can help determine a diet (if you need one) and keep you on a healthy path.
Hope that helps! Best wishes!
I’ve been quiet lately. It’s been hard to find the words. I go through these ups and downs when it comes to this disease. There are days when I feel like a warrior - like I can handle anything - and then there are days like I’ve had this week. Where the stress is too much and I’m spontaneously crying about stupid things. It’s so hard to explain the emotional rollercoaster to people. I can go from being thrilled, excited, giddy in one moment to an absolute basket case the next. It’s stupid things that set me off too. For example, yesterday I was finally having a day where I felt like I looked good, starting to get back to my healthy self and then we had a work lunch where they ordered burgers. I got my gluten free bun and tried to be as safe as possible but I ate red meat and within 2 hours I was in pain, swollen and crying. The pain always makes me think things like why me and when will it stop and what if it never stops. I want more better days than bad days but this is one of those weeks where I just couldn’t make it happen. Maybe next week will be better.
The documentary I’ve been waiting and waaaaiting for has finally been released with English subtitles!
It’s a measly, easy $5 to buy and watch online - I’ve just bought it and can’t wait to see it and support the awesome women who made this doco!
As a fellow documentary maker and Endo sister, this makes my heart sing :)
Click here to watch Endometriosis, the tip of the iceberg
I’ve been waiting to see this documentary! Thanks for the link! I know what I’m doing this weekend! Has anyone seen it? What were your thoughts?
Words of Wisdom Wednesday
I hit the 200 mark! Thank you everyone who has joined here! In the interest of helping to make this blog as informative as possible, is there anything I can help you find? Anything you really want to see on the blog?