Week Three of Bloggers Unite for #EndoMarch2014: Letter to my Representative

Week Three of Bloggers Unite for #Endomarch2014 is upon us and I am so inspired when I read the blogs of other participants. This blog task may be one of the most important yet, writing a letter to your Congressional Representative regarding the march.

 It is so important to invite your Congressional Representative to the march and to give them information regarding the march. Upon contacting their representatives, some other women have actually been contacted and invited to a meeting with their representative to talk about the march and endometriosis. Maybe your representative cannot make the march, but maybe they will wear a yellow ribbon that day in support and post it? Maybe they will post information regarding the march on their social media sites? You never know what can happen and what doors may be opened! Feel free to cut and paste my letter and make it your own! Check out some of the other letters posted and feel free to borrow from them as well! Find out how to contact your representatives here: http://beta.congress.gov/members

The Honorable Eliot L. Engel

Member of the House of Representatives

2161 Rayburn House Office Building

 Washington, DC 20515  

 

Dear Representative Engel: 

I invite you to be part of an exciting worldwide movement on March 13, 2014 to support women with endometriosis. For far too long, women have been suffering with this disease in silence. Let this year be the year we leave our pain, hopelessness and despair behind. On March 13th we will bring our strength, resiliency and determination to the streets of Washington, D.C. to have our voices heard. It takes an average of ten years for a woman to be diagnosed with endometriosis due to the lack of education and awareness among medical professionals. By the time a woman is diagnosed, her health has been damaged, in many instances irreversibly.  Did you know that New York State Department of Health has recognized endometriosis to be one of three diseases that causes significant harm to young people? Statistics show that right at this moment, one in ten of your female constituents are suffering from endometriosis.  

I am part of that statistic. I was misdiagnosed and misunderstood by many medical professionals while I was in my late teens and early twenties.  Despite the fact that endometriosis was present throughout my pelvic cavity, I was told by doctors that I had a low pain tolerance and that my symptoms were either just in my head or were caused by mental health issues. Finally, when I was 26 years old, a fertility doctor properly diagnosed me with endometriosis after performing an exploratory laparoscopic surgery. I have had a total of six endometriosis-related surgeries, the last of which occurred in October 2013 and was performed by 4 different surgeons: an endometriosis excision specialist, a colorectal surgeon, a urologist and a cardiothoracic surgeon.

I am joining women gathered from across the nation in Washington, D.C. on March 13, 2014 for the Million Women March, to better educate medical professionals and spread awareness to the greater community, so that the disease can be more easily and timely recognized by doctors and patients alike.  One of our goals is to make endometriosis education part of school curricula to help young girls get diagnosed early and accurately. As we work toward our ultimate goal of encouraging research to find a cure for this disease, we will also advocate for better diagnostic tools for doctors and better treatment options for patients.

I hope that you can join me in Washington, D.C. on March 13, as my representative and as an individual with compassion toward women suffering with endometriosis. You have a great record for championing healthcare for your constituents, and I would be proud to march beside you that day. For more information regarding the march, please visit: http://www.millionwomenmarch2014.org

Thank you very much for your kind consideration.

Sincerely, 

Casey Berna

What #Endomarch2014 Means to Me Personally

Hey Everyone!
  First of all, I am SO EXCITED to see fellow bloggers coming together for the Million Women March for Endometriosis. If you are just hearing about the Bloggers Unite for Endomarch 2014, or you have not done your first blog yet, have no fear, it is not too late! Come along and join us!
  For this week's blog post I decided to do a video on why I am Endomarching on March 13th in our nation's capital. The endomarch team is looking for women to make videos just like this one. There are a few parameters you will need to fill so there is a theme running htrough all of the videos. I will post them below. Here is why I am endomarching, I can't wait to hear why you are endomarching!

 

 

Here is what the Video documentary team needs you to say! 

1. Hi, My name is ___________

 

2. I  have suffered from endometriosis for ______ number of years.

3. I’m Endomarching because _________­­­­­­­

4. I hope my story will move others to join our cause.

5. Endometriosis: Time to end the silence.

 

If you have any questions, feel free to email me, caseyberna@gmail.com or the video team

endomarch.video@gmail.com ! Also, feel free to write the blog post out as well!



 

 

 

 

 

 

 

Bloggers Unite for Endomarch: Week 1- Basic Info: EndoMarch 2014

I advocated last year for RESOLVE. Cannot wait to go to Capitol Hill for Endometriosis Awareness.

 

What: Endomarch 2014 is an endometriosis awareness event that is happening in cities worldwide.

When: March 13^th

Who: Dr. Cameran Nezhat and his team have worked hard to organize this movement. They have recruited volunteers from all over the world to help make this happen. On March 13^th, professionals, patients and their loved ones will come together to stand united with the desire to improve the quality of life for patients everywhere with endometriosis.

Where: The march will take place in cites all over the world.  You can see what is happening in your city on the Endomarch website. I will be attending the Endomarch in Washington D.C.  There is a full day of events taking place that goes into the evening. The staff has secured hotel discounts for participants traveling into D.C. and even some airlines have participated in giving participants discounts. All of that information can be found under “files” on their facebook page.

Why: Endometriosis is a disease that effects at least 1 in every ten 10 women, yet it takes on average ten years for women to get diagnosed due to the lack of education and awareness in the medical field and the general population. There is very little in the way of public awareness for the disease. Women with endometriosis often suffer in silence. Women often are left misunderstood and lose their jobs, friends and the support of their family while left in chronic, debilitating pain. Women lose their organs, their pregnancies, and their fertility as well. Endometriosis has a profound impact on the lives of its patients and those near to the patient. The only way we will see improvement in awareness of the disease, money raised to find better diagnostic and treatment for endometriosis is to come together as a community and make some noise. We need to be heard.

How: Register to attend the march today. Contact a march precinct manager to see what is happening near you. Come join me in Washington D.C.. I will be giving out hugs to all the ladies I connect with online. I can’t wait!

Become an Endomarch Blogger and Spread Awareness

10 weeks of Blogging until the EndoMarch

Thank you for your interest in being an EndoMarch Blogger! You don't have to be going to the Endomarch to participate, you just have to be passionate about helping others and spreading awareness. To participate start completing the following blog tasks starting the week of January 12^th.  Make sure to always add a link to the Endomarch website after every blog. If you are active on twitter and facebook, please share your blogs on social media. We hope to have an official “endomarch button” in the near future. Check back to grab it to add it to your blog. Thank you for participating and spreading awareness.

Week 1 January 12th-18th

Basic Info Post: The What When Why Who How of the Endomarch. Check the Endomarch website for details.

Week 2 January 19th-25th

What does the Endomarch mean to you personally?

Week 3 January 26th- February 1st

Write a Letter to Your Congressional Representative about Endometriosis, the Endomarch and why he/she should participate. For an example letter check back here to see my post. Click here to see who your representatives are.

Week 4 February 2nd-February 8th

Interview someone you know who is going to the march and post the interview. If you don’t know anyone else who going, have a friend interview you and post it. If you are not going and do not know someone who is, write about a celebrity that has endometriosis, or find a story online.

Week 5 February 9th- February 15th

Pick one of the goals of the march and write about how it would change the lives of endometriosis patients. Check out the goals here.

Week 6 February 16th- 22nd

Why is it important for the world to recognize endometriosis?

Week 7 February 23rd- March 1st

The Endomarch is three weeks away….How are you feeling about going? What are you most looking forward to/most nervous about! If you are not going to the Endomarch, write about ways you can spread endometriosis awareness in your immediate community.

Week 8 March 2nd- March 8th

Did you tell your friends, family, co-workers that you are going to the march? What were their reactions? If you are not going to the Endomarch you can answer, do your friends family and co-workers know about your struggle with endometriosis? Are they supportive?

Week 9 March 9th-13th

Last minute blog before the trip!  What are you packing? Do you have plans to meet up with any other women? Are you volunteering? What are your expectations of the day? What are you most looking forward to/nervous about?

Week 10 March 14th -22nd

Write about your experience at the Endomarch.  Post a picture and tell your story. What did the Endomarch mean to you?


Please remember to share your blog on social media sites. If you are participating in the Endomarch Blogger Initiative please email me your name, where you are from and a link to your website so I can post a master list of all of those participating. You can email me the information at CaseyBerna@gmail.com or simple leave it in the comment section of the block.

New Year's Resolutions 2014

Many people make New Year’s Resolutions around this time of year.  The definition of resolution is “The state or quality of being resolute; firm determination.” In the past I have made resolutions to exercise more, spend more quality time with friends and family or to eat better.  But as 2013 comes to an end and the start of a 2014 is imminent, I find myself simultaneously reflecting on this past year and thinking ahead to the future. I want to make attainable goals that really mean something, not only to me, but the entire endometriosis community.

Simplify My Life: Endometriosis is a very complicated disease. Even the experts in the field admit there is still so much more to know about endometriosis in terms of the origin of the disease and how to diagnose and treat it. Just this past fall, I had a complicated surgery with Dr. Seckin and his team of three other surgeons. I cannot change that I have endometriosis, nor can I immediately change how complicated the disease is and the pervasive way it impacts my life. So I have decided to simplify everything in my life that I can. I find myself repeatedly asking the questions, “Do I need it?” and “Do I love it?” If the answer to both of these questions is no, then I am letting go of it. I am determined to live more simply.

Be Gentle With Myself: I, like ALL other endometriosis patients, am a tough survivor.  But I also find, like MANY other endometriosis patients, I am tough on myself. Sometimes I think it stems from my own denial of the disease and other times I think it is from a deep desire NOT to let this disease cripple me or impact my life. I am constantly pushing myself to the point of exhaustion and often ignoring my endometriosis symptoms until they are debilitating. In 2014, I am determined to be gentle with myself. I am going to accept that I have a disease which makes me fatigued and sore. I WILL give myself a break. I am going to keep reminding myself that being aware of the impact of my disease and giving my body a rest, does not make me weaker, but makes me more awesome. I am determined be more awesome in 2014.

Be More Vocal About My Disease: I am determined to talk about endometriosis whenever it seems appropriate. For example, a group of my husband’s and my high school friends came over for a holiday gathering.  The mostly male group asked me how my year was. After taking a deep breath, I briefly talked about my epic surgery with Dr. Seckin, the same as I would if I had a knee replacement. They listened and wished me well and then the conversation moved on. We all survived the conversation and were better off for having it. I am determined to be brave and talk about my endometriosis, because my friends, my family, my co-workers, my community and the world at large will ALL be better off for having this conversation.

Reach Out to Other Women with the Disease: When I was first diagnosed with endometriosis, I did not talk about it and I did not know anyone else with the disease. Through the Endometriosis Foundation of America, Endowarriors, social media sites like facebook and twitter and even while sitting in the office of Dr. Seckin, I have connected with so many other women with the disease and have helped others get diagnosed. I have learned that reaching out not only helps others, but enriches my life is so many ways. The sharing of information and support is the only way we will get through the complexities of living with this disease. I am determined to make something beautiful come from this horrific disease.

I am wishing and hoping that all of those who struggle with endometriosis find some moments of peace and happiness in 2014. With the resolution of 2013, may we be a year closer to a cure, to global awareness and general understanding of endometriosis.

Holiday Gift Guide for Your Loved One with Endometriosis

Is the one you love struggling with endometriosis? Would you like to give her a gift this year that says, “I love you and I am thinking about you”? Here is a list of thoughtful gifts for the woman in your life that suffers from endometriosis.

Gifts that are under $10

You don’t have a lot of money to spend? Have no fear, you can still provide a thoughtful, loving gift for your friend.

1.       A pair of fun socks: Comfy, cute or cozy, a nice, warm pair of socks can put a smile on anyone’s face.

 

2.       Homemade baked goods: Baked goods are comforting, especially if they follow the endodiet and are gluten and dairy free.  Gluten and dairy free recipes can be found online and are easy to make. My favorite sweet recipe is this brownie recipe.

3.       The gift of music: Look through your music collection and make a CD for your friend. Having endometriosis means often spending time alone while feeling sick.  Having a thoughtful playlist can make a person feel less isolated.

Gifts in the $25-$50 range

1.       Treat your friend to a manicure and pedicure by buying a gift certificate to a local salon.

 

2.       Don’t like baking? Find a gluten free dairy free bakery on line and ship your friend some Christmas cookies.

3.       Buy your friend something cozy to wear, like a nice scarf, or an extra comfy pair of pajamas.  Get her a new pair of slippers or a soft pair of yoga pants.

4.       Endometriosis patients are often going back and forth to doctor’s appointments. If you know she has an ipad or a kindle, get her a gift card to purchase games, apps, movies or books to keep her busy in the waiting room.

5.       Write your friend a certificate for a “girl’s night in.” Bring in take out and a movie on a night of her choice when may not be feeling well.

Gifts in the $75 range and above

 

 

1.       A heating pad is an endometriosis patient’s best friend and an excellent one is the gift that keeps on giving. You can find heating pads for less money, but there are some top of the line heating pads that can get pricey.

2.       A gift certificate for acupuncture or massage therapy.  Endometriosis is an expensive disease and often treatments that can help with the symptoms of endometriosis are too expensive for patients to afford. Giving the gift of acupuncture or massage therapy would mean a lot to patients.

3.       A donation to your friend’s “egg freezing,” “infertility treatment” or “surgery” fund would be an everlasting gift. Has your friend told you she is struggling to pay for needed treatments? Any donation would be a thoughtful gesture that shows you are aware of her struggles and care.

You can find many products on line made by women with endometriosis for endometriosis. Some products even benefit charities worked to improve the lives of women with endometriosis, like the Endometriosis Foundation of America. Honestly, even the smallest gesture, like a simple card saying that you care, would mean the world to someone who is in pain and suffering during the holiday season.

Casey Berna is a patient of Dr. Seckin’s and an endometriosis and infertility counselor and advocate. To learn more about her story and her practice go to www.CaseyBerna.com. 

 

 

The Sunshine Award

 

One of my twitter besties and fellower endosister, @furrowedfox has nominated me and a list of others for "The Sunshine Award" after she was nominated by a friend for her own excellent blog.  You should know that it is not the first time I have been nominated for a sunshine award. At the end of every high school year, awards would be given out for attendance, high academic achievement in each subject, sports and other high achieving endeavors. I was in the honors program in an academically competitive high school and was by no way on the ivy league track like many of my friends. I didn't do sports. Certainly a young woman with endometriosis did NOT have a chance at perfect attendance. I usually didn't get any awards during these programs unless it was a participation certificate. That is until my junior year. That year, our class voted on The Christine MacMenamin Memorial Award, which has since been turned into a scholarship. Christine MacMenamin was a beloved junior who died in a car accident miles from school. The award was presented to, "The junior whose smile and gentle nature touch all who know her." I knew I had been nominated, but I didn't think I was going to win. But, I did win and the whole class stood and cheered. I was so touched. I came back to my seat and one of my best friends made a snarky comment, "Oh, wow, big deal, so you got the smiley sunshine award."  There went my moment. I felt embarrassed and deflated. If 34 year old-not as gentle-Casey could go back in time it would tell 16 year old Casey to tell her friend where she could stick her snarky, hurtful comment and our friendship. (Not so sure if 34 year old Casey would be nominated for that award, but I digress....)

 

Here is the catch to being nominated, I have to answer ten questions assigned by my foxy friend. I then have to come up with ten questions for ten other blogger friends to answer. I am pretty sure this is just awesome press for the sunshine award people, but I am going to go with it and be a team player since my foxy friend just had endometriosis excision surgery and rocked it.  Also the 16 year old Casey would be totally into this.

The Questions:

1. Who/What’s your go to music/song/artist when you’re feeling down and need a pick-me-up?When I am feeling down I tend to listen to mellow music and wallow. In high school you would have caught me listening to Billy Joel's Greatest Hits Volume 3. If you want to get more depressed you listen to, "And So it Goes." In college you would find me listening to the entire Counting Crows Album, "August and Everything After." I dare you to listen to "Raining in Baltimore" and try to feel happy. During my infertility years I listened to many "mixes" that I put together. I wrote a blog post about it. These days I will put on the Lumineers album if I need to mentally vegetate. I saw them in Central Park last summer, they were awesome.
2. What accomplishment are you most proud of?                                                                     Raising a little girl who is kind, thoughtful and polite enough to get her own smiley sunshine award, but fierce and confident enough to tell her friend to shove it when faced with a snarky comment.
3. What is your go to comfort food?                                                                                                   I could write a whole blog on this. Basically anything that has dairy or gluten in it, extra points if it has both, like pizza. Also anything fried and salty. Anything with chocolate. None of these things are good for endometriosis by the way.
4. What advice would you give your 20 year old self if you could?                                                   I would tell my 20 year old self to go to see an endometriosis expert immediately. I would tell her to tell all of the bajillion doctors who had no idea what was wrong with me to shove it. I would tell her to freeze as many eggs as she could as soon as she could.
5. To date, what was your happiest moment in life?                                                                      My happiest moment was when I saw my daughter's heart beating at 6 weeks. It was a tiny blob that was flickering. After surgeries and procedures, we were finally pregnant. I was relieved. I didn't really know about miscarriages. I didn't really know about preterm labor. I didn't truly appreciate how fragile that moment was and how things could turn so poorly so quickly. My ignorance at that moment allowed me to be truly happy and enjoy the moment. It was a luxury that my next four pregnancies that would end in miscarriages didn't afford me. Enjoying the moment and not being fearful of what could come next is a luxury I know so many of my friends that are still fighting hard in the infertility trenches will never experience.
6. And what was your saddest?                                                                                                           I think it was the final realization that we will never ever have any more biological children and probably will never have any more children through other family building options.
7. If you were a Muppet which one would you be and why?                                                         Strangely,  I asked this SAME question to student applicants who were applying to be a part of my Fordham Global Outreach team to Tijuana Mexico to do service learning on the border. I feel like I am a combination of a lot of muppets! I took a Muppet personality test and got Kermit. But I surely think as a Leo there is some Miss Piggy to my personality.
8. Dark chocolate or milk chocolate?                                                                                                 I love milk chocolate but stupid endometriosis has me eating dark chocolate because it doesn't have dairy in it.
9. Who – person, character, alive, dead, fictional, cartoon – would you most like to have a conversation with?                                                                                                                          I think it would be Jim Henson, creator of the Muppets. He was an incredible soul.
10. Cake or pie?                                                                                                                          Neither! Again in trying to be gluten and dairy free I avoid both of them. I do make great gluten free dairy free brownies and a mean gluten free apple crisp though.

For my Ten Sunshine Nominees listed below here is what you have to do:
1. post the sunshine award logo
2. Answer the following ten questions on your blog.
3. Come up with ten questions of your own and nominate ten new bloggers!

My Ten Questions:
1. Do you like your name?
2. What is your most prized possession?
3. If you were to treat yourself, what would you do?
4. What is one of the defining moments in your life?
5. What is your favorite recipe?
6. Who is the first person you call when you have important news good or bad?
7. What breaks your heart?
8. Vacation on a beach by the ocean or by a lake in the woods?
9. What is your favorite smell?
10. Name your favorite non-profit and why.

My Ten Sunshine Nominee Bloggers:
http://www.fromiftowhen.com/
http://www.secretinfertility.com/
http://endendoforever.blogspot.ca/
http://ourlastembryoblog.wordpress.com/
http://journeywithendometriosis.wordpress.com/
http://endofromtheheart.blogspot.com/
http://mischiefmanagedblog.com/
http://jenrutner.com/
http://dellaquella.wordpress.com/
http://onfecundthought.com/