Radio Interview with Victoria Hopewell

So I officially had my first radio interview! I had the pleasure of speaking with therapist, author and infertility advocate Victoria Hopewell about endometriosis. We spoke for a half an hour about what the disease is, the fertility and overall health implications of the disease and finally talked about how patients can be empowered by advocating and joining endometriosis communities.
        Here it is!
Endometriosis Interview With Victoria Hopewell

Love, Your Friend With Endometriosis

Dearest Friend,

         I have been trying to write this letter for some time now, but it is so hard to put into words what I have been going through. I fear that my delay in explaining my past behavior has worsened the strain on our friendship.  But if there is one message to convey to you in this letter, it is that I have done and always will do the best that I can. It is just that sometimes my best falls short, and I have finally figured out why.

Last week, my doctor performed laparoscopic surgery to explore my abdomen, and he found what he had suspected all along—the presence of a terrible disease called endometriosis.  I should have told you sooner, my dear friend, but it has taken me a while to wrap my head around this harsh sentence of chronic pain, infertility and many other unpleasant symptoms.

                I know you’re wondering, “What is endometriosis?” Well, all women have a lining in their uterus that builds up and then sheds during their menstrual cycle. But for women with endometriosis, this uterine lining escapes the uterus and attaches to other organs, the pelvic wall and the ovaries, and can even travel as far as the kidneys, the lungs, and even the brain. Wherever it is implanted, this lining thickens and bleeds during the menstrual cycle, causing scar tissue, adhesions and blood-filled cysts.  This condition is not natural and is incredibly painful. After my surgery last week, my doctor told me “There wasn’t a place in your abdomen that didn’t contain endometriosis. Your abdomen was filled with the disease.” Adhesions had grown over my ovaries, causing them to stick to my pelvic wall, which made my monthly ovulation excruciating. Parts of my urinary system were also attached to my pelvic wall, and endometriosis was found on my bladder, which would explain my constant need to urinate. Finally, the disease had spread to my bowels and my intestinal tract. Now I know the cause of my horrible stomach issues for the past 15 years!

                Recovering from surgery has been really hard, but what I think is harder is dealing with the diagnosis of endometriosis itself.  There is no cure for this terrible disease, and because it is often dismissed as a non life-threatening female condition, there are very few researchers studying it despite the enormous impact it has on 1 out of every 10 women.  The only real treatment is surgical excision, but this is not a cure. There is a good chance the disease will continue to grow and I will have to have many surgeries throughout my life to treat it. 

                I am writing all of this to you in an attempt to explain what has been going on with me, and what you have been noticing, for years.  You probably thought I was a hypochondriac. Mirriam-Webster defines hypochondria as extreme depression of mind or spirit often centered on imaginary physical ailments.  Honestly, until I had my surgery, I wondered if it was all in my head!  I recall all of the times I had to cancel on you at the last minute because I had my period and was in so much pain.  When I was feeling well enough to meet you for dinner, I would often have to go straight home afterwards because my stomach was upset.  I am plagued with guilt when I think about that time I couldn’t help you move because I was ovulating and couldn’t even stand up straight. I will never forget when I missed your big party because my period left me so dizzy and nauseous that I couldn’t make it out of bed.  There are so many things I missed out on because of this disease. There have been so many times I have let you down.

                I want you to know my disease is real. My pain is real.  I know I may have come off as flaky, unreliable and even at times apathetic to our friendship.  I know I may seem high-maintenance because wherever I go I need to have a bathroom close by, and I can only eat at restaurants that have a menu that won’t upset my stomach. I know that being my friend means you have to be extra flexible and understanding all the time, which must be exhausting.  Endometriosis often leaves me exhausted, and there are many times I want to give up on myself.  But I won’t give up, because my life is worth fighting for.

 Despite how my disease has challenged me, it has also made me a better person and in turn, a better friend. I am stronger because of it and can be strong for you when you need it. I rely on hope and grace to carry me through the most difficult times and can share these wisdoms with you.  I have learned to appreciate the wonderful people in my life and hold them close.   I remind myself every day of what I have to be grateful for. If you stand by me, I will be the most loyal friend you have.  I don’t sweat the small stuff. Little things like a functioning heating pad and dairy-free ice cream make me incredibly happy.  Handling this disease and facing all that comes with it require an excellent sense of humor. How else could a person deal with highly invasive medical tests and ridiculous bowel symptoms?  I can share all of this and more with you if you choose to stick with me through this.

                I hope my diagnosis helps you understand my situation a little better. I encourage you to research endometriosis for an even clearer picture of what I am going through. I encourage you to ask questions. I promise I will talk about it with you. I will let you know how I am feeling and why. I will be open and honest with you at all times.

As you can see, with my new diagnosis I need friends more than ever! Right now, I am overwhelmed with the thought of what endometriosis means for my life and my future. Will I be able to meet someone who will want to date me with all that comes with this disease? Will I ever get married? Will I be able to have children? How will I manage to live with a disease that has no cure and very few effective treatment options? These are big questions that I don’t expect you to answer. They have no answers. What I am hoping is that after you read this letter you will want to come over and watch a movie with me.  I have a pint of chocolate coconut ice cream in the freezer, and seeing you would make my heart happy.

With Love,

Your friend with endometriosis

Ten Tips for a Successful Endometriosis Laparoscopy Recovery

Laparoscopic surgery using excision to remove endometrial implants is seen by many expert endometriosis surgeons as the best way to treat endometriosis.  Although laparoscopic surgery is one of the least invasive types of surgeries, it is still not an easy procedure to endure.  Healing from the surgery takes time and requires a lot of fortitude on the part of the patient. Dr. Seckin is a leading expert in endometriosis surgery and founder of the Endometriosis Foundation of America. He performed my last endometriosis surgery and together we came up with great tips that are helpful during the healing process.

1.       Use the over counter remedy, Gas-X®:  Dr. Seckin performed my fourth abdominal laparoscopic surgery and I only wished I had had this advice for the first three! During laparoscopic surgery, your doctor will fill your abdominal cavity with gas in order to lift the abdominal walls away from the cavity to get a better view. After the surgery the gas remains, and this can cause intense shoulder or back pains. Gas-X® helped me tremendously after my last laparoscopic surgery. Simethicone, the active ingredient in Gas-X®, is a powerful medicine that breaks up the surface tension of trapped gas and allows your system to deal with it naturally. Ask your doctor if Gas-X® would be right for you. It made a huge difference for me.

2.       Use a mild stool softener such as Colace: I hear so many women talk about the terror associated with having their first bowel movement post-surgery, especially women who have just had endometriosis on their bowels and rectum removed.  To compound this issue, narcotic pain medications often prescribed to relieve pain can also cause constipation and eating a diet high in fiber immediately following surgery is not advised. Drinking at least 64 ounces of water a day will help with this issue.  Although stronger suppositories, laxatives and enemas may not be advised post-surgery, ask your doctor if a mild stool softener such a Colace, can be taken post-operatively. Colace can help ease the strain and pain associated with your first bowel movements.

3.       Keep your diet light for the first few days: I remember the day after my appendectomy, my first laparoscopy, I was very hungry. For my first meal post-surgery, my parents brought me over a dish from my favorite Italian take-out restaurant.  I eagerly gobbled my down my food and ten minutes later, I was throwing it all back up.  If you haven’t experienced it, vomiting right after abdominal surgery is quite painful and unpleasant.  Through trial and error I learned that for the first few days post-surgery, it is so important to eat lightly. Broths, Jell-O and other easily digested foods will help get you back on track. Also may I recommend using this post-surgery period to start following an endometriosis friendly diet to try and make the impact of the surgery last for longer.

4.       Keep your heating pad close: A heating pad is every endometriosis patients’ best friend, including after surgery. After all of my surgeries, I found that my body was achy in other places besides my abdomen.  I was quite surprised the first time I found out that during surgery, the doctor may contort your body into crazy positions in order to find the best position to operate. I thought the position I was in when I went under anesthesia was the position I stayed in throughout the surgery! The physical stress of the operation combined with the stress on my other muscles trying to compensate for my hurt abdomen, would cause my back to hurt. The heating pad can help tremendously with these aches and pains and also can help relieve your swollen abdomen.

5.       Benefits of moving around: It is important to start moving around 24 hours post-surgery.   Small walks to the bathroom or around your bed can actually help you heal faster. Keep in mind, in the beginning, doing something little like getting up to go to the bathroom can be exhausting, but it will get easier. A little bit, goes a long way.

6.       Don’t overdo it: Less than a week after abdominal surgery, a friend of mine decided to take a walk into her small town. Before surgery, walking less than a mile wouldn’t have been an issue for her. Feeling a little bit better after taking it easy for most of the week, she thought it would be okay. I remember getting a panicked call from her asking me to come pick her up half-way there. She felt horrible. Whether it be exercising, vacuuming, or lifting, make sure not to overdo it and get your doctor’s approval first. Your body is using most of its resources to heal, so doing anything too taxing on top of that can set your recovery back, or even worse, cause internal sutures to burst.  Resting for so long can be discouraging. Don’t be disheartened, you will be back to your normal life in no time.

7.       Keep an eye on your incisions: If closed properly incisions should appear healed within a week, and then it takes about 6 weeks for them to heal completely. If incisions seem overly swollen or if they seem to be infected, schedule an appointment with your doctor to have him/her check them. During one of my surgeries with a less than helpful surgeon, one of my incisions reopened through no fault of my own. My doctor did not want to hear about my post-surgery issues and advised me to pack it with gauze daily until it healed, which took weeks. The scar the incision left was atrocious and I was angry at not only his lack of skills, but his disinterest in any follow up care.

8.       First period post-surgery is always bad: After my first endometriosis surgery I was not prepared for the incredibly painful period that came right after. It was unlike any pain I had felt on my worst days battling this disease. I was terrified that during surgery the doctor had broken my reproductive parts and now they were somehow detonating in my abdomen. Little did I know this was completely normal. During excision surgery your doctor works on every part of your reproductive parts, cutting and scraping all of the endometriosis away. Naturally there is a lot of healing that has to take place to feel completely better. That healing does not fully happen within the time of your next cycle. So as your reproductive parts start to work again, keep in mind they are still tender.  After my last surgery with Dr. Seckin, by my third period post-surgery I felt incredible, better than I had in years.

9.       Don’t Be Afraid to Call Your Doctor: I feel as endometriosis patients we have a long history of not having faith in our medical professionals to help us.  How could we? For years, so many professionals have dismissed our pain or admittedly have had no idea how to best serve our medical needs.  Sometimes I feel like we have a “Why even bother?” attitude when it comes to reaching out. As exhausting as it is to muster the strength post-surgery to be your own advocate and fight for your health, I am begging you to do it! If you feel in your gut that something is wrong with you, give the doctor a call, even if it is midnight. If it is two weeks later and you feel like something is wrong, call anyway!  Remember you are not only a patient, but a client. Certainly if you experience fever, nausea, vomiting, chills, difficulty urinating, extreme pain in your legs or abdomen or difficulty breathing, call immediately. 

10.    Keep the Faith: I remember one of my surgeons telling me that some people go back to work a few days after surgery. I was NOT one of those people, nor have I met one of those people yet. It took me three full weeks to get back to my regular schedule.  I was feeling great by the fourth week then got my period and was devastated again by pain. I remember crying, feeling so disheartened, because just as I thought I was better, I was sick again. But I eventually felt better and then I felt amazing, better than I had in years. This surgery is emotionally and physically draining. The good news is that excision surgery helps so many women feel so much better. They feel as though they get their lives back. My hope is that you will too!

 

Please feel free to add any tips you have found to be helpful post-surgery in the comment section below. As a community, standing together, we can help each other fight this terrible disease. Know you are not alone and that you are ENDOSTRONG.

Padma Lakshmi Speaks Out About Endometriosis

 

 

You may know Padma Lakshmi as the beautiful and talented host of Bravo’s hit television show Top Chef.  What you may not know about is the tireless advocacy work she does as co-founder of the Endometriosis Foundation of America.  Endometriosis is a painful and chronic condition that affects approximately 176 million women and girls worldwide; 8.5 million in North America alone. Endometriosis is a disease where the tissue that lines and then sheds from the uterus during a normal menstrual cycle, escapes the uterus and then grows on the outside portion of the uterus, the ovaries, the intestines or other parts of the body. The disease causes internal bleeding which can lead to chronic pelvic pain, infertility, adhesions, inflammation and disruption of the digestive and urinary systems, among other problems. Currently there is no cure for endometriosis, and the only truly effective treatment is surgery, which brings only temporary relief.

Recently, I had the pleasure of hearing Padma talk about her battle with endometriosis.  I deeply respect and appreciate her passion for promoting awareness and education for a disease that has had such a profound and lasting impact on my own life. Padma always looks so poised and put together on television. It was surprising to me how her story was so similar to all of our stories.  Here are excerpts from her story, in her own words.

Misdiagnosis

The reason I that I got involved with the Endometriosis Foundation of America, at co-founder Dr. Seckin’s insistence and encouragement is because I became very angry at the fact that I personally was only diagnosed with endometriosis at age 36. I’m a college educated woman. I have a lot of resources at my disposal…like healthcare, which is very comprehensive. I have access to the best doctors. And yet, I too fell through the cracks. And I didn’t fall through the cracks because I didn’t know that something was wrong. I didn’t fall through the cracks because I had negligent doctors…they just didn’t know any better.  There wasn’t the research and there wasn’t the technology that there is now. I was operated on by a gastro doctor, who had he known that there was a bigger, underlying problem, I am sure he would have given me different care.

Taking Control of Your Medical Care

I was diagnosed at 36. I got divorced at 37. And at 38, almost 39, I found myself single and childless, feeling like many women feel in their early 30’s and even early 40’s, that we have squandered or whole-souled some of our life for other parts of our life. There was a lot of guilt and anger I felt at myself for not taking better control of my own body and not going to that second or third gynecologist and say, “Wait a minute, why am I taking handfuls of Vicodin every month?” I should have done that. But I thought that the doctors knew better. Doctors should listen to patients and patients should listen to their own bodies. Pain is your body’s way of telling you something is wrong.

The Expansive Impact of Endometriosis

I never like to call our foundation, “A women’s health foundation.” I consider endometriosis a family health issue. Because not only does it affect a woman biologically, it affects her personally. And it affects every person that woman loves, every person she cares for, every person that wants to care for her and loves her. It affects her professional life and all her colleagues.  And thereby, it affects us all as a culture and as a society.  1 in every 10 women have endometriosis.

Sharing Information with Our Younger Generations

We need to share information with younger women. My mother has a master’s degree in public health. She is a nurse. When I learned about my body, when my mother had that talk about the birds and the bees, she said to me, “I had a lot of cramps (and I knew this because I saw her with the heating pad 4-5 days every month) and I’m sure that you probably will too. Some women get it and some don’t.  It’s just your lot in life.” It is not your lot in life. We have to watch what we say to our children as they are forming, not only their bodies, but their relationships with their own bodies and their self-esteem.  Imagine if my mother hadn’t been told the same thing by her mother. Imagine if my mother said, “If this happens, we are going to find out why, and we’re going to try and fix it as much as we possibly can…so that you can live the life that you should have the opportunity to live.”

 

Thank you Padma for fighting for all of us! Your incredible work is truly appreciated.

We are ENDOSTRONG

Recently, I heard Dr. Tamer Seckin, co-founder of the EFA and a leading world expert in endometriosis surgery, describe endometriosis as a disease in which the patient feels as though she is constantly being tortured.   I thought that was quite an accurate description of a disease that has plagued me since I was 14 years old. Chronic pain and fatigue, excessive bleeding and swelling, diarrhea and bladder issues are just some of the many symptoms that I and so many other women in the endometriosis community face on a daily basis.

Unfortunately, the general public is largely unaware that this disease exists, never mind the tremendous impact it has on our lives.  So we are often dismissed as constantly sick for no good reason, weak and even hypochondriacs. No one can see the way our organs are fused together or how adhesions are often pulling our insides in a way that can make even standing up extraordinarily painful.  As wives, daughters, mothers, friends, co-workers, and students we are expected to live up to our societal responsibilities and roles as we endure the physical and emotional side effects of this debilitating disease.  We often choose to suffer in silence and carry the burden of this disease alone, because honestly, it is a hard and often awkward disease to explain, “You see, it all started when the lining of my uterus somehow escaped my uterine cavity…”  But we know we are not hypochondriacs. We are simply amazing.

Endometriosis patients are some of the strongest, most determined and most resilient women I have ever met. We are ENDOSTRONG.  What does ENDOSTRONG mean?  ENDOSTRONG means listening to our bodies when we need to take a sick day or even medical leave because the disease is too overwhelming. ENDOSTRONG means choosing another doctor because we are not getting the medical treatments we need. ENDOSTRONG means bravely facing our 3^rd, 4^th, or in my case, 5^th endometriosis related surgery with no guarantee of relief, only a hope and a prayer that it will work.  ENDOSTRONG means accepting the lifestyle limitations endometriosis can bring and accepting the help of those around us when things get bad.  ENDOSTRONG means addressing the emotional impact of this isolating disease whether it’s seeing a therapist or joining a support group.  ENDOSTRONG means taking the time to take care of ourselves even though we as women have been taught from an early age to put our needs last.  ENDOSTRONG also means helping to take care of each other by forming a supportive community and sharing our stories and experiences. ENDOSTRONG also means raising public awareness and banding together to find a cure.

Who is ENDOSTRONG?  The nurse, who despite her pain, gets out of bed and works the night shift taking care of critically ill patients is ENDOSTRONG.  The young professional who passes her tax exam shortly after recovering from surgery is ENDOSTRONG.  The hopeful mother who is on her 5^th IVF cycle after experiencing multiple losses is ENDOSTRONG.  The high school senior who despite missing her graduation because of her period manages to keep a positive outlook on life and have hope for the future is ENDOSTRONG. All of the women in third world countries who cope with this excruciating disease without any healthcare, medications or surgical relief are certainly ENDOSTRONG.  We all are the faces of endometriosis and together we are a force to be reckoned with.

I am proud to be a part of this community of women. We are survivors.  Every day we accomplish the ordinary while dealing with the extraordinary. It is an honor and a privilege to be working with the Endometriosis Foundation of America and, through these blogs, to be able to communicate with even more members of the endometriosis community. I hope we can start an endometriosis revolution and combine our extraordinary strength to raise money to find a cure for this disease while raising public awareness for our cause.   My dream is one day when my daughter is grown, 20 years from now, she will say, “Wow, I can’t believe when you were growing up so many people never even heard of endometriosis.  I am so glad they found a cure. ”

To help spread awareness and raise money for endometriosis research,  I have started a store on Zazzle where any proceeds I make from the sales will go directly to the Endometriosis Foundation of America. I was inspired by my friend,  Jen Rutner , who has been selling the #hope T-shirt for years now!  We have t-shirts, we have onesies, we have furbaby accessories and we also have ENDOSTRONG stickers specifically designed to fit onto Sharps containers for ENDOSTRONG women who are cycling. Please check the store out and let me know what you think!

You will also be able to find my official EFA blogs posted in the future at  http://www.endofound.org/ . But please note this is my personal website and posts on this site may or may not reflect the views, mission and beliefs of the EFA. 

How We Soared: Advocacy Day 2013

 

I am having trouble putting into words one of the most incredible experiences of my life.  I am not the same person that I was before I attended RESOLVE’S Advocacy Day on May, 8 2013 in Washington, D.C.. I went to Advocacy Day proud to represent the infertility community and excited to advocate for those who are in the midst of their struggles. I also went to Advocacy Day to educate the fertile community, many of whom do not see infertility as a medical issue but rather as an unfortunate circumstance that adoption can cure.  Adoption is a phenomenal option for couples struggling with infertility, but medical procedures that treat the disease should also be viable, affordable options for building a family. My hope in participating in Advocacy Day was that by starting conversations with our Congressional representatives about our journey, we could chip away at the stigma placed on infertile couples so that when my daughter reaches adulthood she will not have to fight so hard to get the services she may need. More fundamentally, I wanted to break the silence surrounding this condition that so often leaves couples feeling helpless and misunderstood.

So I packed my superhero cape and my fancy new suit dress, and traveled to D.C. ready to save the infertile men and women of the world. But what RESOLVE and the amazing infertile community did when I got there was take my cape off and wrap it tenderly around my shoulders, like a blanket, and healed my heart in a way I didn’t think possible.  The night I arrived there was a reception that allowed the advocates to socialize in a more informal setting. It was there I finally got to meet some of the amazing women I had been in contact with on the internet for several years.  And I had the pleasure of speaking to other women whom had traveled from all over the country. Although I had not met any of these incredible women before, there were no awkward conversations. We all had the common thread of infertility to break the ice.  We were part of a sisterhood forged by pain, heartache, devastation, humility and loss.  Sometimes infertility can make you feel so alone, even if you are in a room with 100 people. Simply walking into the reception and feeling that I was immediately understood, down to my deepest insecurity and vulnerability, made the 5-hour train ride to D.C. worth it.

After the reception, a group of us went out to dinner. As we introduced ourselves, I was humbled and honored to be with such a strong group of women.  We sat and talked like we had known each other our whole lives. No one asked me, “Are you going to have more children?”  No one said, “Maybe if you just relaxed, it could happen.”  Experiencing infertility has changed the way I view the world, and these women had the same unique world view that I did. They too get a sick feeling in their stomach when they walk by the pregnancy tests in the local drug store.  They too have had to bravely congratulate and buy baby gifts for so many friends who are now on their second, third or maybe even fourth child.  Talking with these women about shared experiences was, for me, very uplifting and healing.

The next morning, before we left to speak to our Congressional leaders, there was an information session on the importance of being at Advocacy Day.  I cried as women got up and shared their experiences of pain and loss with the audience.  Their pain was my pain. My passion for the cause was further ignited by speakers reminding me that we had everything to gain by speaking with our representatives today and nothing left to lose.  Infertility had already taken so much from us already.  The rest of the day I walked through the offices of Congress talking to aides who can actually make a real difference in the world.  I told them my story, and how the two bills we were advocating for were so very important. I shook their hands, looked them in the eye and asked them if I had their support.  Wow.

How could I be doing all of this? There were days along my journey that I felt completely broken. Suffering from endometriosis, a disease that causes infertility and chronic pain (as if I didn't need a constant reminder of my condition), there are STILL days I feel completely broken.   Some days at the lowest points of my journey, it is so difficult to stop feeling devastated to the core. It often takes a conscious reminder to say, “Even though my reproductive parts are broken, I am not broken. I am not just my reproductive parts. Before I went to D.C. for Advocacy Day, I kept saying to my husband, “I cannot believe I am doing this. Can you believe I am doing this?”  When you feel physically sick, hormonally unbalanced and emotionally drained for so long, sometimes taking a walk down the street seems like an insurmountable feat.  After I stopped trying to conceive last year I have been slowly healing and coming to terms with the profound, lasting impact infertility will have in my life.  Going to D.C. to advocate for the infertility community helped me to heal those broken pieces.  As I got on the train back to New York that night, I felt a little more whole.

 It was then that I started thinking about how getting a bill passed is actually very similar to an infertile person trying to conceive. That is why the RESOLVE advocates are the fiercest, most competent advocates to hit Capitol Hill.  There will be times when we will have to navigate lots of red tape and do a lot of the leg work ourselves and yet we will channel the patience and tenacity to get the job done.  There will be times when we may have to convince other professionals WHO SHOULD KNOW BETTER that there is absolute truth in what we are saying and yet we will stand by our convictions even though we may be dismissed or even persecuted for our beliefs.  There will be times on our journey that we may have to compromise to reach our ultimate goals and yet we will find a way to work with what we have been given for the greater good.  There will be times that we are willingly acting under the uncertainty that all of our hard work and fighting may lead to nowhere and yet will keep strong our focus and determination. There will be times that we will feel hopeless and discouraged by this difficult process and yet we will dig deep and stay afloat.  Sound familiar? This is what infertile women do every day.

Allow me to re-word a quote from Dr. Martin Luther King, Jr., “The ultimate measure of a (wo)man is not where (s)he stands in moments of comfort and convenience, but where (s)he stands at times of challenge and controversy.”  I would like to thank all of the women whom I was privileged to stand beside on Advocacy Day.  I would like to thank RESOLVE for doing an incredible job of organizing this event.  I am a better person for having met all of you and for having been there.  I am so incredibly grateful for the opportunity to change infertility from a condition of powerlessness and despair to a cause for empowerment and strength, when for so long it has led me to feel broken and inferior. Here’s to seeing even MORE of you for Advocacy Day 2014. Next year I will not bother packing my super hero cape. The ability to stand united and tell our stories is what allowed our hearts to soar.

How to Help:

I urge you to check out the two bills we are advocating to get passed. Write to your Congressional Leaders and ask them to support these measure that help those in the infertile community.

The Family Act: This bill makes infertility treatments more affordable to middle class families.

http://www.resolve.org/get-involved/family-act-of-2011.html

The Women Veterans and Other Healthcare Improvement Act: The bill gives access to the needed infertility treatments that wounded veterans need to conceive and start a family.

http://www.resolve.org/get-involved/women-veterans-and-other-health-care-improvements-act.html

Meet Your Advocates!

I am so honored and grateful to be traveling to Washington D.C. next week for RESOLVE Advocacy Day 2013. http://familybuilding.resolve.org/site/PageServer?pagename=advday_home I have been struggling with infertility for almost 8 years. I spent the first four years of my struggle suffering in silence, afraid to speak out. I was the only one I knew who was having infertility problems while so many family members and friends got pregnant and had their first and sometimes even second and third children, while my husband and I waited for our baby.

It wasn't until after I had my daughter, and we continued our infertility journey to try and conceive another child, that I found the online infertility community and was able to draw support from and give support to other women who knew exactly what I was going through. A whole new world opened up to me and I am so grateful to have found it.

After a very difficult road filled with much loss and heartache, we have decided to stop trying to expand our family. But I remain here in the infertility community as an advocate to support other women and to try to change society's views on infertility through our own personal story. I am not alone. Advocating with me are women from not only around the country, but from around the world.

Below I have answered questions about why I am going to RESOLVE Advocacy Day 2013. I have also listed the blogs of the brave women I am proud to be standing beside on May 8th. Check out their blogs to find out why they are going to RESOLVE Advocacy Day 2013.

1. Where are you in your infertility journey right now? In one sentence! 

After enduring 3 IUI's, 3 IVF's--2 with PGD, 4 miscarriages, 5 endometriosis related surgeries my husband and I are done TTC and are so grateful for our 5 yearold daughter.

 

2. What inspired you to go to RESOLVE Advocacy Day 2013?

As a social worker, it has been my dream to speak with Congress about an issue I am passionate about. I can't imagine being more passionate about anything else. Then I heard about all the ladies from Twitter who were going! I was sold.

 

3. What do you want Congress to understand about infertility?

Infertility is a medical issue. Infertility is a disease.  The infertility community must NOT be dismissed.

 

4. What are you most looking forward to about Advocacy Day?

Honestly, laughing and socializing in person with friends I have met through the infertility Twitter community.

 

5. What is one thing other advocates will be surprised to learn about you when they meet you?

  When I start talking passionately I become a typical New Yorker-- hands flying everywhere. I can get unintentionally loud and my accent shines.

Meet some of the other advocates who are going!

Fran Meadows
www.secretinfertility.com

Jen Rutner
http://jenrutner.com/

Miss Ohkay
http://missohkay.wordpress.com/

Whitney Anderson
http://www.whitneyanderick.com

Lauren
http://notjustanarmywife.blogspot.com/

Holly
http://ready2bmom.blogspot.com/

Carrie
http://pregnant--pause.tumblr.com/

Katie
http://www.fromiftowhen.com/

And we have an advocate from Canada! How awesome is that! So impressed by her courage to come such a long way! Introducing....
Kelley
http://readyformymiracle.wordpress.com/