Ready To Take MY Challenge...?

I have recently been thinking about two things and I have only now realized that they are basically the same thing.  First, I was thinking about an answer to the question I have been asked by so many people: "What can I do to help?"  I don't really have an answer to that because other than love and support, the things I need are medical.  Second, I kept thinking about how, on all sorts of websites, I am being inundated  by videos of celebrities doing the "ALS Ice Bucket Challenge."  I thought that was a cool and fun way to bring a lot of awareness to a terrible disease.  So then it hit me... What would be the most helpful would be to find our own "ice bucket challenge" to raise awareness about endometriosis!

Obviously, I am not going to try to start an ice bucket challenge for endometriosis.  But I thought about breast cancer and how with MAJOR awareness campaigns, breast cancer has a much higher survival rate than it used to due to better research, better understanding, and better treatment.  I mean, I have even seen football players wearing pink socks during October (which I believe is Breast Cancer Awareness Month).  That's a pretty good sign that your cause has gone mainstream.  Now I see that ALS has generated word of mouth from all these celebrity ice buckets AND has increased the donations to the cause by more than 100% from last year. (Here: Ice Bucket Donations Reach $88.5 Million) Amazing, huh?  That means more money for research, more money for funding, more money for tests, more money for treatments.  Now THAT is what would help me.

Who even knows about this?

While I feel like I am well-versed about endometriosis now and I feel like my doctor does keep up with current trends, treatments, etc, that doesn't mean I can answer the important questions.  Books written about endometriosis also remind me that they do not have the answer to the important questions (so you would think it would be hard to write about book about it!).  What do I mean by important questions?  I mean: What causes endometriosis?  Why is it so terrible for some women and non-symptomatic in other women?  Why is there no way to know if you have it without having exploratory surgery?  (That is a BIG one for me, it's almost crazy to think about).  How can it be treated so that it no longer affects a life?  Why are so many doctors so uninformed about something that is apparently not uncommon in young women?  

A diagnostic tool to identify patients with endometriosis without having to have surgery would be greatly beneficial.  Having nurses, doctors, primary care physicians, ER attendings all with a better knowledge of endometriosis would also be very helpful.  My insurance currently does not approve physical therapy, which might be very helpful to me right now, because it does not recognize my physical therapy as "real" physical therapy.  That's certainly frustrating.  Without going on a way-too-long tangent, it would be very helpful if I could find the best doctor possible, have insurance cover whatever she recommends, and whatever else is needed to feel good again.  I am so tired of my insurance telling me that what my own doctor, who knows my disease so much better than anyone at the insurance company, cannot prescribe certain medications and have them covered.  So really, I am NOT doing everything possible because I get blocked by people who have no idea who I am and what I am dealing with.  Insurances will ask for prior authorization, and then after a doctor explains why a medication is necessary, they will still deny coverage.  It's enough to drive a person batty, I tell you!  And if I find another good doctor who is recommended by the first good doctor, chances are abysmally low that this good doctor will fall under my insurance coverage because so far, I have basically found that bad doctors are covered, good doctors are not.  Extremely frustrating.  

So what can be done?  It boils down to two things for me.  Awareness and money.  What ALS did was brilliant because it tapped celebrities who are looking to throw money at charities.  If you have not gone online for the past month and don't know what I'm talking about, click here: ALS Ice Bucket Challenge Takes U.S. By Storm.  I've read about donations of $10,000 and I'm sure that doesn't make a dent in anyone's pocket.  Basically I think that a ton of research is needed to learn more about endometriosis (and there are other related diseases as well, but right now I'm advocating for myself).  If anyone reading this knows a celebrity, let's hit him or her up for some money and some publicity!  Or get a bunch of movie stars to show up somewhere with endometriosis shirts on so the press can start the talk about it.  I don't know how to get there.  I don't know if giving people frostbite is the best idea, but that idea has just skyrocketed.  I could list the names of people who I've seen take the challenge by first name and you could STILL guess who they are!  (Jennifer, Bill, George, Kobe, Chris, Robert, Grey's, Hugh, John, Gwen, Jessica, Justin, etc.)

All of this is my answer to the question of what you can do to help me.  Let's find an Endometriosis Challenge!  Or a theme or action that colleges and athletes and neighbors can get behind!  If you are super rich, please donate to the Endometriosis Research Center!  If you are not super rich, but are creative and smart (and I know a lot of you are!), let's find an idea that we could use to spread awareness to the right people so that it goes somewhere great.  Small ideas... big ideas... wacky ideas... any ideas that you would actually DO would be the best gift that I could think to ask for.  Get involved!  Then get one more person involved...