<![CDATA[KnockOutEndo:<br />Winning the War One Battle at a Time - Blog]]>Wed, 03 Feb 2016 15:56:31 -0800Weebly<![CDATA[choosing to fight together]]>Wed, 03 Feb 2016 22:05:44 GMThttp://www.knockoutendo.com/blog/choosing-to-fight-together​Hello Everyone.
 
Thanks for continuing to support Knock Out Endo. We would like to plan an event with your help and ideas in mind. Please message us on Facebook or email us at knockoutendo@gmail.com to help. We are also looking to help women financially to meet with excision surgeons. While we may not be able to pay in full at this point, we would like to help as is our mission.
 
I realize I have been quiet lately and have posted on Facebook that I was attempting to only write and post with an optimistic mindset. However, endometriosis doesn’t always present with the most optimistic thoughts. It is one of the reasons support is such a necessity for endometriosis patients and their families. It can wear you down and it takes time to pick yourselves back up again, but you can do it! I believe in each of you and your ability to push forward with your endo, not as your endo.  
Recently, I was hospitalized with a flair up and it seems that a surgical intervention will be in my future early than I had hoped for and expected. This has caused an increase in my anxiety and my mind has been racing with questions and concerns to discuss with the team. For now I am attempting to distract myself with different games and activities that help me to save spoons. My family and friends have done an amazing job at supporting and loving me.
 
I want to end this post by thanking the doctors that take care of us. There are specialists that help us daily with excision and options. However, there are also other specialists that help us in between surgery such as pain managers, gastroenterologists, pulmonologists, and gynecologists. It can be hard to find a team, but finding a team that knows about endo or is willing to learn about it is truly an amazing gift. It may take some time to find this team, but once you have found them and you begin to feel like you are part of their team in your care it can seem more manageable to live with endometriosis and your symptoms in between surgical interventions or while saving for excision.
Remember to appreciate those around us-family, friends, and those in the medical field that support our journeys.
 
Love and spoons everyone.]]>
<![CDATA[The Lonely life of Endo and how to get away from it]]>Wed, 19 Aug 2015 00:18:28 GMThttp://www.knockoutendo.com/blog/the-lonely-life-of-endo-and-how-to-get-away-from-itLet's talk about endometriosis and the feeling of loneliness. Many women express feelings of loneliness before and after diagnosis, largely while symptomatic or during a flare up. Pain can be very isolating.

We have previously discussed anxiety. High levels of anxiety can also be isolating-like when we choose to stay home because we are anxious of getting sick if we go out (yes, its not only you, we've all been there).

Here are some tips that I've found help me when I feel lonely when dealing with my endo (mind you I'm a work in progress on this too).

1. Find at least 1 person you can talk to about what's going on, your thoughts, symptoms, feelings, fears, concerns etc. I have a few people I update on how I'm doing. Sometimes it helps to talk and they can help you calm down (anxiety can be a factor with keeping things bottled up too).

2. Know that part of the reason you feel isolated, is because you might be isolating yourself. This one might come across as harsh but hear me out. While there are days that we curl up in bed with a book or movie or music and need company to come to us or maybe a video chat ;), there are other days where we can go out maybe for a short walk or just to a coffee shop. I find being outside my house makes me feel less alone, even if I'm just seeing strangers on the street.

3. Talk to people in the same situation as you. Thanks to social media, we can always be connected to one another, working together and being supportive to each other. Sometimes talking to people that aren't in the exact situation (a patient) doesn't help. Supporters try very hard but sometimes you need someone to say "oh man I've been there" or tell you a story from their experiences. The first time I met another patient was at the Endo Warriors NYC meeting. It was eye opening to me and I felt a wave of relief. I met women that I speak to daily and was really able to connect to others. Check out their website at Www.endowarriorssupport.com for more info on support meetings in your area!

4. Do a project. Crafts, coloring, gentle exercise, reading, DIY projects, trying out that new recipe etc. It can take your mind off endo for a bit even on some rough days (again there are exceptions). Take it a step further and invite a member of your support team to join you and get in some smiles and laughs.

5. Communication is key-with your doctors and support team. Sometimes being able to say "I don't want to talk about it right now" or "I need some time" and expressing your needs will really help. I especially take some time alone after doctor appointments. I wait to absorb pieces before explaining them. Other expressions that could help are "I need a hug" or "Could you be here?". These discussions allow others in and get you away from isolating, lonely feelings. It also lets your supporters know how they can help (it can feel helpless to be a supporter at times). It can be hard as a supporter to know what will help you so open communication will help to keep everyone involved and together as a team.

I'm always here for all of you ladies and supporters. Be sure to keep in touch! 

Love and spoons,

Bern

]]>
<![CDATA[Endo updates]]>Mon, 10 Aug 2015 17:41:23 GMThttp://www.knockoutendo.com/blog/endo-updatesThis post isn’t one for sugar-coating. This is a blunt post. This is life with endometriosis. Good and bad.

Here’s the thing-endometriosis is a chronic illness, no known cause, no known cure. Now that we’ve gotten that out of the way, let’s talk about how it changes our lives. I’ve written previous posts with positivity sprinkled in there. Personally I think it is the best way to go about dealing with this disease (yes disease, not condition). You can’t always look at this disease as what has gone wrong, there must be some type of positivity or optimism in order to stay sane.

Life is full of challenges and endo challenges patients, their relationships with friends, family, and significant others, and continues to baffle the majority of the medical community. Endo changes everyone involved and every aspect of life, but life is always changing-with or without endo. This is one of the key points I try to remind myself of constantly-if I didn’t have endo, I’d be changing and evolving. It is more difficult to think of endo as limiting me and my life rather than just an additional challenge.

My endo story is a bit different from others-I didn’t have pain for years and years (I did, but I didn’t realize it was abnormal)-and then I got really sick. I had 3 surgeries in 3 years-each in July. I just passed my one year anniversary of my excision-and yet, I will likely need another surgery for my liver and diaphragm. There are many ways to paint this picture of my life with endo. I could explain how much more difficult it made my college life, how hard it was for me to focus, the treatments I went through, the lack of knowledge I had when I was first diagnosed, the relationships I lost, or I could talk about how working hard made me realize what I wanted in life, learned the people that will stick by me no matter what, and the knowledge that I have gained not only on endometriosis but on gynecology, pain and surgery in general.

Endo sucks. It hurts and causes some bad days, but there are good days too. There are new relationships created, lessons and knowledge learned and shared, and a new outlook on life. Personally, I get anxious more easily now-about appointments, day-to-day activities, and life in general (in fact, I’m anxious about upcoming appointments as I write this post). I am also that much more grateful for the good days, forcing myself to be out of my little box, challenging myself to be stronger everyday and continue to fight this disease. Endo brings about constant changes in your course-change in plans, change in relationships, and change in medications and options.

However, life gives everyone challenges and with or without endo it would constantly be evolving-it is how you take those challenges and make them work to your benefit.

]]>
<![CDATA[Wrapping up Endo Month]]>Tue, 14 Apr 2015 18:09:16 GMThttp://www.knockoutendo.com/blog/wrapping-up-endo-monthAs Endometriosis Awareness Month has officially come to a close, so have the major events which concluded with the Blossom Ball last night.

It was a privilege to attend various events throughout the month and learn from physicians as well as patients about endometriosis. While, we were unable to attend the Endomarch and the EFA on Today events, we were there in spirit cheering everyone on! It was great work for endometriosis awareness.

It was lovely to see endometriosis getting out there in main stream media and I was thrilled to see that the New York Times was able to run their article at the end of March to add that extra piece of awareness.

This past weekend was the EFA patient day, medical conference days, and the Blossom Ball. Patient day was lovely and involved various speakers and an amazing panel of physicians and researchers as well as break out groups. I had the opportunity to meet new patients and some of the specialists in person.

There was a lot to be learned from that day including herbal tips for endometriosis from Dr. Taylor, and to hear about upcoming research for endometriosis. It was especially nice to have an open panel of physicians answering questions on various topics regarding endometriosis care.

The Blossom Ball featured a video with patients and their supporters discussing endometriosis and a lovely speech by Diana Baldo-a patient.

Endometriosis may not be on the forefront of every news article-but people are beginning to listen and there are people on our side as patients.

At Knock Out Endo, we are finally able to start helping patients and are speaking with many women about excision surgery. While monetary donations towards excision may be small right now, we truly feel that growth is happening and are of course happily accepting donations to further help women get their surgery.

We will be updating the website to feature a page about patients, their supporters, and their stories later on in the month.

If there are any questions regarding excision surgery funding and/or being featured on our new page to share your story, please feel free to contact us at knockoutendo@gmail.com

Stay tuned everyone and remember you are not alone! We fight as one together!

]]>
<![CDATA[A Call to Come Together]]>Sun, 28 Dec 2014 22:18:02 GMThttp://www.knockoutendo.com/blog/a-call-to-come-togetherToday, I am writing our end of the year post! It is amazing how quickly time flies. First and foremost, I would like to thank all of you for your love, care, and appreciation. The number of hours that go into Knock Out Endo are immeasurable and it is wonderful to see that we are out there and helping others through our support and awareness efforts.

This year, we have done a lot at Knock Out Endo. We officially became a non-profit organization and have begun to organize and plan how we will achieve our mission of financial aid for women to gain excision surgery with a specialist, education, and awareness. We are selling 4 products on our store page and are accepting donations at this time.  We have grown reaching over 800 people on Facebook, over 300 on Twitter, and over 50 in our online mailing list through knockoutendo.com.

Knock Out Endo has worked toward helping patients and their supporters advocate for themselves and their loved ones. We successfully completed our June get- together as well as our fall Thankful for You letters.

I’d like to place a challenge for 2015-one that I believe has been needed for quite a while within our community of supporters and patients-challenge ourselves to come together. It is in coming together that we, as warriors, can get stronger, initiate and create change, and lift each other up in times of hardship. We need to stick together in order for our efforts to work effectively. It is impossible for one single person or unit to change the world, but by supporting and loving each other for the efforts that we put forth, we show respect and compassion, and most importantly, we show that we are a team.

I have said many times that the healthcare field is a team sport-with the patient as the team captain because without the patient, there would be no need for the rest of the team. Likewise, endometriosis MUST become a team sport. We must come together to help each other get through the battles that endometriosis presents. For if we are able to come together and help each other in all ways possible, we will succeed. We will beat this disease not as one person or one patient, but as a group of warriors loving one another and providing comfort and aid when possible-with words, gestures, and kindness to our fellow warriors and their supporters.

Endometriosis is not something to be ashamed of, or something that you need to be silent about. Endometriosis is a disease for the rough and tough of the world and even the toughest of people need support. Who is better to support them than the 178 million other patients and their supporters?

For these reasons, I challenge each of you to come together and lift others up this year-through your gifts, talents, and support. I know that as a community we can do this. We can do this.


Sending love and spoons to all,

Bern Bingham


]]>
<![CDATA[Advocacy discussion¬†]]>Sun, 14 Dec 2014 19:45:22 GMThttp://www.knockoutendo.com/blog/advocacy-discussionOk everyone, today I want to speak on patient advocacy [most often self advocacy]. 

We all get the paperwork of 'your rights as a patient' but still feel that we are being too pushy sometimes regarding our care.The important thing to keep in mind is that as the patient you do have your rights to respect, dignity, and care. As the patient it is your right to choose your physician, seek out another physician if you are unsatisfied with your care or desire a second opinion, and weigh-in on your thoughts regarding treatment options.

Since you are seeking care, you deserve to be treated with the respect and dignity of having all questions answered regarding your care. If you do not understand something, you have the right to ask for clarification regarding the process, medication, tests, treatments, or surgery.

Tips on being your best advocate:
1. Write down your questions and be sure each is answered and that you understand the answers
2. There are some providers that allow you to tape their sessions regarding care so that you can review what was said after the appointment. If you'd like to ask that you can as well.
3. Bringing a supporter with you as an extra set of ears and someone to back you up or think of additional questions is always a plus. 
4. Go into your appointments educated and with thoughts regarding your care. For example, if you know you are against something and are firm in that belief, be open and explain it to the provider so that everyone is on the same page. Similarly, if you know your preference on a treatment plan it should be discussed with the physician.
5. Request records for YOURSELF, not just if seeking another opinion. You have a right to your medical records and to ask questions about them.
6. Be open and honest with your provider. It is important that the doctor-patient relationship is built. You should be able to feel comfortable with them-not worried or intimidated.
In reality, healthcare is a team sport-and you're the star of the team because without you, there wouldn't be care to be given.
]]>
<![CDATA[Dear Endo...]]>Tue, 21 Oct 2014 00:20:34 GMThttp://www.knockoutendo.com/blog/dear-endoDear Endo,

          It’s taken me quite some time to get to the point where I’d acknowledge how awful you truly are. You have tried to break me down every day, nagging and hurting me-taking away the things that I had come to love and enjoy.

            Endo, you've tortured me and ruined far too many days and I’m sure there will be more days like today in the future. We will be fighting, battling, arguing-but both of us are stubborn, neither wanting to quit. You have been vile enough to ruin holidays, celebrations, sporting events, even sports themselves, relationships with both friends and family, and came very close to stealing my passion for patients, nursing and the medical field.

            While you have tried, and continue to fight me, I am writing to tell you of your failures. I have learned to adapt to the hostile environment you've created within me. I have learned how I can avoid your harsh treatment—more importantly, I have learned to fight and survive.

            You have taught me how strong I can be when pushed. I have graduated, fostered relationships, and learned to recognize how you work within me, much to your dismay I’m sure. I went through a period of time where I was ashamed of you, of how you made me feel, of the emotional, physical, and mental impact that you had on my life. You had taken hold with a tight grip and refused to let go.

            However, I am no longer ashamed. You will not take over and run my life. I have been given one shot at this and I will live my life to the fullest. Adaptation is a part of life and you have helped me to become better at adapting. I have changed who I am, who I socialize with, what activities I participate in, and the fashion that I wear. I have learned about myself along this process, about those who care, and those things that help me to fight you (even something as simple as a scarf around my mouth and nose in the cold seasons).

I have found my calling, not only in the medical community, but in nursing and I will not quit. I have educated myself on how best to beat you down every day as you have tried so hard to do to me. I spend numerous hours researching, learning, and teaching those around me so that more will know of your evil ways and help me to become healthy again. You will not keep me silent. You may be able to slow me down, but you will not stop me. I will help each and every patient possible to defeat you.

 

]]>
<![CDATA[Baby Steps-Postop]]>Thu, 14 Aug 2014 11:45:59 GMThttp://www.knockoutendo.com/blog/baby-steps-postopAs many of you know, I recently had excision surgery for the treatment of my endometriosis. I have been seeing a new specialist and have a much better doctor-patient relationship with him. I had been waiting to write about my surgery until I had my postop appointment and absorbed and processed the information that was given to me.

I was diagnosed by a regular GYN in July of 2012 and have had surgery for endometriosis every year since, including surgery last year at NYU and this year at Lenox Hill. I can definitely say there is a huge difference between seeing a specialist for endometriosis versus an inexperienced or nonspecialist. I was treated as a person, not just a diagnosis. The hospital staff knew about endo without my needing to explain it to them.

I woke up from this surgery and knew the pain I was experiencing was different from my normal endo pain. It was purely surgical pain and I was thrilled. It was an incredible feeling to know that I was better. I spent the night in the hospital and the staff was very sweet and understanding to both myself and my family.

At postop I learned about all the work that the team of surgeons did during my four hour procedure. I am so lucky to have had such a great team working on me to get me well. My mom and I were able to see pictures of my procedure and the doctor explained everything that was going on in the procedure. I was able to learn so much about my body and endometriosis at that appointment and I think mom gained a new understanding of how I had been feeling every day and why I was experiencing such high amounts of pain.

 Rather than bore all of you with all of my results, I will say that endo was found again [despite a past surgeon’s ridicule for saying I thought such a thing] as well as adhesions and scar tissue. It was an extensive excision surgery that involved many techniques on various parts of my body. I am grateful for each of those techniques and each of the hands performing in the surgery as I am slowly beginning to feel like myself again.

I think the greatest way to talk about my surgery is by stating what I am now able to do as compared to what I was not able to do before surgery. As I said, I woke up feeling only surgical pain as compared to endo pain. I was walking to the bathroom and around the hospital halls on my own the night of surgery. My pain was well managed in the hospital and at home. At home I needed minimal pain medications for a few days and was able to manage on Motrin for a few days after that and on bad days. I was able to shower on my own once I came home from the hospital [day 2 postop].

 At two weeks postop and with stitches removed, I was able to start doing yoga and have completely changed my diet around. I have been able to lose 12 pounds so far, in hopes of getting back to the healthier lifestyle and body that I had before my surgeries.

At 3 weeks postop I was able to wear my real jeans with minimal swelling as compared to my maternity jeans needed for my abdominal swelling that got worse throughout the day. I am not as fatigued-although I do get tired as I am still recovering. I am able to sleep through most nights and don’t need to take a nap during most of my days. While, I do still have uncomfortable days, I am feeling much better than I used to which gives me time to focus and concentrate.

Healing does not happen overnight. I felt it was important to share all the little accomplishments that I have had so far in my recovery. These accomplishments give me hope that I will get back to being myself soon.

If the opportunity to see a specialist is there-please take it. The knowledge and experience that a specialist has is unmatched by those that are not specialists in the field. It is one of the reasons that I have written about the need for endometriosis as a specialty in the past and the advocacy for excision surgery with a specialist as a main focus of Knock Out Endo. We strive to help women get the opportunity that I was lucky enough to have and to help women with this disease get their quality of life back.

]]>
<![CDATA[Endometriosis: Being A Fighter Comes With the Diagnosis]]>Sat, 26 Jul 2014 16:21:33 GMThttp://www.knockoutendo.com/blog/endometriosis-being-a-fighter-comes-with-the-diagnosisPicturePhoto Credit: Google Image
As I read through many posts in closed groups on Facebook, tweets, support groups, and private messages between myself and other endosisters, it has become evident we all have something besides endometriosis in common--we are fighters.

Each of us has determination, perseverance, and strength which I find both amazing and inspirational. We spend time giving to each other, learning about the disease, and educating and advocating for awareness-not just for ourselves but for the millions around the world.

The diagnosis of endometriosis comes with many ups and downs not just for us but also for our support systems. Every day, collectively, we enter into battle and win through positivity, spreading awareness and hope that tomorrow is a new day.   

For many of us, each day presents new rounds of battle. Some days may include a headache, backache, or just being sore. These battles are easier to conquer which then allows us to carry on with daily life. Other times, the battle is not so easily won. However, on these days, it is important to remember we are not alone and can lean on our support systems-family, friends, and endosisters. Each day brings its own victories.

We always have to be at our toughest-fighting an uphill battle against endometriosis. It is not easy, but with each other’s support, it can be done. We can all come out of this battle a champion.

Keep in contact. Keep searching. Keep advocating. Keep fighting. Keep Knocking Out Endo :) 


]]>
<![CDATA[The Silver Linings of Endo Life]]>Fri, 27 Jun 2014 13:28:08 GMThttp://www.knockoutendo.com/blog/the-silver-linings-of-endo-lifeRecently, we held our first Knock Out Endo event [pictures to follow]! It was great to see everyone and be able to relax and enjoy each other's company. Life is good. Patients and supporters attended the event and it was nice to meet the people we often only speak with in online support groups.

We are planning to do another event in the fall. Please stay tuned for the location and date. We are hoping to make it a larger event with some surprises for guests as well. :)

The dinner got me thinking-each person lives the 'endo life' a little differently. The key is remembering the silver lining. While many guests were diagnosed with endometriosis, we were all able to laugh, smile, and share stories about our lives or work-not just about endo. I think it is important to realize that there is far more to us as people and a community than just a diagnosis. 

Each woman and her support system have a lot to bring to the table and to offer. A diagnosis should not stop us from being who we are, who we wish to become, or the dreams we wish to live out. It may take a little more time, but in that time, I have found that you can learn a lot about yourself and your supporters. 

This disease forces us to be fighters and to be strong everyday.

While we all have our days that we struggle and have to deal with symptoms, there are a lot of good days and good times mixed in. It is so important to think back on these memories and see our strength as family and sisters during harder days. 

There are days that it is harder for us to get up and get out of bed and sometimes we need rest-but endometriosis is not all that we are. It has given us a connection and a way to meet individuals that we would not have had the opportunity to meet without this diagnosis and company to enjoy on good days and bad days. To me, that's a pretty big silver lining. 

 ]]>