Saturday, November 23, 2013

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:

Wednesday, November 13, 2013

Endowarriors Launch Party

Endowarriors is an up and coming non-profit whose sole mission is to support women with endometriosis. The founders of this organization, Jill Feursich, Nicole Malachi and Jordan Davidson,
The Beautiful Co-Founders of Endowarriors
through their own profound understanding of endometriosis, saw there was a gaping hole in the needs of the community in terms of support.  They started Endowarriors to provide a safe place for women to talk about their fears, their pain and everything else that comes with battling this chronic and pervasive disease on a daily basis.  They currently run a support group in New York City as well as one in New Jersey. Their dream is to one day have an endowarriors support base in every city around the world. They also have started an endobuddy program which pairs endosisters from around the world. The goal of that program is for everyone struggling with endometriosis to at least have one person in their life there to support and understand them until they have access to a support group.

Endowarriors, which started with simply a few people hanging out in one of the co-founder's apartment, is quickly picking up speed and gaining more attention from the endometriosis community. They have even been asked to be a special part of the upcoming Million Woman March for Endometriosis and recently participated in The EFA's Nurses Conference. This week they hosted a fabulous launch party to celebrate their new website: . The evening was filled with great food, drinks and enthusiastic chatter amongst connected endometriosis patients and their loved ones. There were four of us guest speakers, who along with the co-founders themselves, engaged the energized crowd. I was incredibly honored to be one of them. We all testified to the prevalence of isolation amongst endometriosis patients and the importance of having a support network filled with empathetic, compassionate people. Dr. Datta, a gynecologist whose focus is endometriosis, spoke about how the disease is still so misunderstood by many medical professionals. Dr. Wilson, a psychologist who works regularly with endometriosis patients as part of a multi-disciplinary team lead by Dr. Seckin,  spoke of the emotional impact endometriosis has. My endosister Rachel Cohen and I presented a patients' perspective on what Endowarriors has meant to us.

I met so many incredibly strong women last night. I was so touched to hear their stories. No matter how sick, swollen or fatigued, everyone made such an effort to get dressed up and to show up,
Endosisters all dolled up and looking fierce
not an easy task for an endometriosis patient. The co-founders have always had this dream of having a free night out for ladies with endometriosis where they can eat, drink and be with another in a positive space. They worked hard to make last night happen and it was such a successful event. I left feeling strong, empowered and with a full heart. The co-founders made each one of us feel so special and welcomed. I felt like a valued and accepted part of an incredible community. Thank you to the co-founders for a job well done and I have NO DOUBT this is only the beginning of the incredible
difference they will make in this community.
       Here is my speech from last night! There was no light in the room, so it is very hard to see, but the audio is clear! After having an EXTENSIVE surgery
with four different surgeons to remove my endometriosis, only THREE WEEKS ago it felt amazing to be there! In my speech I talk about my surgery with Dr. Seckin and how I got through it all thanks to my infertility and endosisters.

Thursday, November 7, 2013

5 Things to Do Before Your Endometriosis Surgery

5 Things to Do Before Your Endometriosis Surgery

Unfortunately, surgery is something that every endometriosis patient has to endure in order to find lasting relief for her symptoms.  The phrase many doctors use to introduce surgery, “Well, let’s go in and take a look” sounds simple enough, but there are deeper implications of what that means to the patient.

I just recently had my 6th endometriosis related surgery, an endometriosis excision with Dr. Seckin.  The idea of having surgery means something very different to me now than when I first learned I had to have my appendix out almost a decade ago.  I don’t know if it that I have gotten better at having surgery or it is just that I now have a better surgeon, but these past couple of recoveries has been a lot smoother overall. I also attribute my post-op success to knowing what to expect during surgery and being able to physically and mentally prepare for it makes all the difference.

Here are 5 things I do before every surgery:

1.       Get my body ready: My past surgery was an extensive one, so I wanted to make sure I was in the best shape possible going in. I tried to go for walks when I felt up for it just to get my body moving and feeling strong. I made sure I drank at least 64 ounces of water every day starting two weeks before the surgery to be nice and hydrated. Drinking so much water also made my bowel prep go smoother! I went to my chiropractor faithfully leading up to the surgery knowing that surgery and recovery is often rough on my back. I made sure I had enough sleep and tried to eat as best as I could.  I made sure I remembered to eat my multivitamin daily and tried to eat foods rich in iron. I also take the time to get a bikini wax. After my first emergency laparoscopy in the dead of winter, I was shocked to learn that a nurse had to “prep my pelvic area” via a bic razor. I now go in prepared.

2.       Get my house ready: Before all of my surgeries I have certain chores I like to do beforehand that will my make my life easier when coming home from the hospital. I wash all the bed sheets in the house the day before surgery. I love coming home from the hospital to clean sheets.  I also make sure I have fresh towels available. I also do all of my laundry and make sure I have a top dresser drawer dedicated to post-op clothes. In it I have loose pants, cotton shirts, clean underwear and comfortable bras. I also like to give the house a good cleaning pre-op, knowing it will be awhile before I have the energy to do so.  If you can have a friend or relative gift you a pre-op and post-op cleaning service, even better!

3.       Shopping List: About two weeks before surgery, I like to create a master shopping list of things I will need post-op. I make sure I have the all food I need in the house in order to prepare for my bowel prep and other light foods I will eat immediately post-op. I take an inventory of my clothing and note if I need an extra pair of sweat pants or a new pair of slippers.  I make sure I have my favorite shampoo, deodorant and moisturizer on hand. These little things make such a difference. I also make sure the house has plenty of things like toilet paper! Few things are worse than running out of toilet paper in the middle of bowel prep!  I also make sure I have things to entertain myself. I often will go to the library beforehand and get a few good books to read or DVD’s to watch.

4.       Preparing Work: Hopefully your job is understanding and respectful of your needed surgery and leave. It is so unfortunate that endometriosis is such a misunderstood disease and is not recognized by so many. I think the following questions are good to ask yourself when thinking about postop work: Are you able to work from home postop? Can you start back with half days? Is there work you can do ahead of time to make things run smoother when you are gone?  Are you able to be honest with your boss on what kind of surgery you are having?  Can a co-worker cover for you? I always find having a work plan before the surgery leads to much less anxiety postop.

5.       Preparing Emotionally: A patient often feels a lot of anxiety and sometimes even sheer panic when faced with an impending surgery. For weeks leading up to my past surgery, whenever I would became anxious I would do a little medication. I would take a deep breath in and say in my mind, “Breathe in peace,” and as I exhaled I would say, “Breathe out stress.” I would repeat that until I felt calmer.  I also made it a point to schedule a meeting with my therapist to talk about the stress and anxiety about the surgery a few weeks before.  Reaching out to family and friends is also a big part of being emotionally supported.  About a week before surgery, I made sure I sent an email out to close friends and family explaining what I was going through and how they could help.  Like many other endometriosis patients, I value my independence and have a hard time accepting a lot of help. Obviously, when you have surgery accepting help is inevitable.  I am not sure what I would have done without people cooking for me and my family, going shopping, sending me cards and taking me to postop appointment in those first weeks.  It was nice to feel their emotional support.  

Excision surgery is currently the best way to help improve the quality of life for an endometriosis patient.  Although it can seem daunting, I have found often the anticipation of the surgery is sometimes worse than the actual surgery and recovery itself.  Mindfully preparing for surgery, both physically and emotionally, can often help with those pre-op jitters and lead to a less stressful recovery period.