Sunday, March 2, 2014

Recognize Endo! - Week 6 Bloggers Unite #EndoMarch2014

It is important for the world to recognize endometriosis! 

I want the world to recognize this disease so that so many others don't have to suffer in silence.  I don't want any girl or woman to stand in the shoes I have stood.  It is very difficult to be diagnosed with an incurable disease, and even more so when it's one that no one understands.  It can be a very lonely diagnosis because you feel alone and misunderstood, and I personally have even been made to feel embarrassed or ashamed of myself due to disease that I have no control over.  There have been times I felt I couldn't measure up, because I felt broken. This is NEVER okay.  Many doctors brush it under the rug, because they don't have answers or truly understand what they are dealing with.  It is discriminating. This disease is important and needs to be recognized.  Currently over 200 million women and girls worldwide suffer from endometriosis, that is roughly 1 in 10.  Effective treatments are far and few between.  This has to change, and we are making that happen. 

 I do NOT want others to suffer in silence!
End the Silence!


Goals - Week 5 Bloggers Unite! #EndoMarch2014

For Week 5, I'd like to emphasize one of the goals of the Million Woman March for Endometriosis and I'd like to explain how it would change the lives of endometriosis patients.

I would like to begin by informing you of all of the goals of The Million Woman March for Endometriosis.  They are all wonderful goals and choosing one was difficult, because they will all make such a huge impact.

Goals:

Empower

• To unite women and their supporters to take a stand against endometriosis

Educate

• To raise awareness about endometriosis and its effects on women and girls
• To educate and train members of the medical community, in order to promote early detection and improved treatment

Effect Change

• To educate the public and medical professionals about endometriosis
• To find a cure for endometriosis, and to develop non-invasive diagnostic tests
• To improve health screenings for endometriosis among girls and young women in public schools
• To educate our government and congress to allocate funding for endometriosis
You can find the goals here at: http://www.millionwomenmarch2014.org/our-goals/


The goal that I have chosen to focus on is "Effect Change".  

I feel that by effecting change in regards to endometriosis that it will greatly impact all who suffer from this disease.  By educating the public and medical professionals about endometriosis (endo), we are creating change. Many have never heard of endometriosis, therefore they have no idea what it is, what it involves, or what it means to the person who is suffering with endo. At minimum, others will have an understanding of what endometriosis is and hopefully how it affects the patients who suffer.  By educating the medical professionals, patients who suffer from endo will have more effective treatment options. 

Finding a cure for endometriosis would certainly impact every endo patient. This would mean they could live a normal, pain free life, work normal job hours, keep plans and arrangements and carry on normal daily tasks that many who suffer currently find difficult to do at times. Developing non-invasive diagnostic testing would eliminate so any surgeries.  Currently the only way to diagnose endo is through surgery. 

Improving health screenings for endomtriosis and conducting them in public schools could help to eliminate the time lapse of diagnosis that occurs.  Currently, the average diagnosis takes 6-10 years after symptoms begin to occur. This is unacceptable.  In some cases irreversible damage can already have taken place before you even have a diagnosis.  This would greatly impact an endo patients life, by saving time in diagnostics and beginning effective treatments as early as possible.

Allocating funding and working with government in regards to endometriosis would be extremely helpful as more research and treatment options would become available. It would bring more acceptance and attention to this disease. Patients who suffer from endometriosis should not be treated any differently than a patient with any other illness.  Allocating funding would open many doors for endo patients.  


I do feel that we are already effecting change!  The more awareness and attention we bring to this disease, the closer we are to more understanding and effective treatment!  We are making a difference!  I am so grateful for this event and the platform it has presented us with!  ENDometriosis!

For more information regarding the Million Woman March for Endometriosis please visit:
 http://www.millionwomenmarch2014.org/

The Interview - Week 4 Bloggers Unite! #EndoMarch2014

Okay, so I do realize that I am several weeks behind... My apologies.   
February was quite a month for me.  March is looking so much brighter


For this weeks blog post, I interviewed someone that I know is going to the Million Woman March for Endometriosis! She'll be attending virtually! 

This wonderful person I speak of is Mirah Jo Cuthbertson, also known as MJ to her close friends and family.  Mirah Jo currently resides in Aberdeen, N.C.
MJ was born in Adak, AK but was raised in Oak Harbor, WA on Whidbey Island until she was 21. Mirah Jo has helped me with other projects as well (see photo to the above)! This cause is very close to both our hearts. 


Here are the questions and responses from our interview.

When were you diagnosed with endometriosis?   
I was diagnosed with Endometriosis in October of 2007 after having my first laparoscopic surgery and months of being on narcotics for "unknown" pelvic pain and cysts.

Did you know what endometriosis was before you were diagnosed? 
I knew very little about Endometriosis before being diagnosed simply because my mom and cousin had both suffered from the disease. 

What do wish everyone knew about endometriosis? 
I wish that everyone knew that hysterectomies are NOT the answer, BC pills are NOT the answer, that it is definitely okay to get 2nd, 3rd, and 4th opinions, and that you are never ever ever alone in this fight! And also that it is MORE THAN OKAY to cry!

What have you found to be the most difficult part of having endometriosis? 
One of the most difficult parts of this illness is letting people help me. I am a "do it myself-er" and to be able to ask and accept help, and allow those I love to see me vulnerable has proven to be extremely rough.

How important is the support of others and what does it mean to you personally?
It is one of THE MOST important things, and personally it makes me feel loved and "normal". Like I'm not broken or a misfit, but that I'm lovable and a whole person. 

What are your feelings about the Million Woman March for Endometriosis? 
I think it is one of the greatest opportunities we as women with Endometriosis have to raise awareness and share our stories and raise our voices to help find a cure! 

If you could say anything to medical professionals about endometriosis, what would that be? 
I would simply ask that they take a step back and remember to have compassion for those of us who are in pain, I would ask them to take the time to try and learn even one specialized skill that would help further our care, and I would ask them to ask themselves if we were their daughters, their mothers, their wives, how far would they go? What would they do to find relief, to find a cure, some of us are those women. 

Lastly I just want to express my utmost thanks for the opportunity to share my story. Each of us has one, mine is no more important than any other woman, so thank you for listening.


Thank you ever so much Mirah Jo for all of your help!  I consider getting to know you, although not in person yet, to be a true blessing.  It is truly wonderful to work with you and to spread endometriosis awareness! I appreciate you sharing your story with us, I know it isn't easy to do and I thank you from the bottom of my heart!  



For more information about the Million Woman March, please visit: http://www.millionwomenmarch2014.org/
If you are unable to attend the march please register here to virtually attend! 
https://events.r20.constantcontact.com/register/eventReg?oeidk=a07e8x0p4e56b251872&oseq&c&ch