Tuesday, June 17, 2014

My Friend Kim

I am so blessed to be able to say Kim Hudak is my friend. Kim is one of my e-sisters and if it wasn’t for Essure, I would have never met her. Kim’s Essure story is so remarkable, and her strength and courage is even more remarkable.

Her journey with Essure began in 2000 when she signed up to be a clinical trial participant. Just like so many, she wanted to avoid surgery and Essure is marketed as non-surgical. She became sick almost immediately and the doctors dismissed her symptoms. They weren’t gynecological nature so it couldn’t be Essure; at least that is what they were telling her.

Her symptoms started with sharp pains in my rear pelvic region which were accompanied by generalized achiness, fatigue and severe PMS symptoms. Sadly, she didn’t get better. She was exhausted all the time and did not want to leave the house. Kim went from being happy, healthy and normal to this shell of person who so sick all of the time.

Since she was implanted, she has been diagnosed with fibromyalgia, hyper-extensive joint disorder, restless leg syndrome and chronic fatigue disorder and has been prescribed a variety of medications that range from pain killers to muscle relaxers and even anti-depressants accompanied by drugs to treat inflammation. Nothing was helping and Kim, sadly thought and truly believed her days on this Earth were numbered. Many nights, Kim would go to bed in fear of not waking up the next morning.

Kim had always suspected Essure was her problem, however, she always second guessed herself since every single medical professional she spoke with insisted it was not. A few years ago, Angie found Kim when she posted information on another page. There were only 500 women in our Essure Problems Facebook group at the time, and we were all like Kim. We were all suffering the same symptoms and we suddenly realized that we were alone.

Kim had true validation that Essure was her problem and she went to work on getting my health back. She reached out to the study doctor, Dr. Linda Bradley, who is still practicing. She never returned my phone calls, faxes or emails. She then tried to get her records to review with my family doctor and gynecologist and she was only sent 8 pages. It took a couple months, and with the help of the media, she finally received her full medical records, almost 60 total pages of documentation. To say she was shocked by what she read in the file was an understatement. She was shocked to read that her information was altered to reflect that she was doing well with the coils. The entire time she was complaining of issues that were documented, her records for the study said she was doing well. Notations were even made that the doctor suspected a nickel allergy severe enough to warrant removal of the devices, however, this was never mentioned to Kim and it was not included in the study notes.

In October of 2013, Kim underwent a hysterectomy to remove the Essure. She did experience a short period where she felt some relief; however, improper removal has left fragments of Essure in her body. Her health is again declining and she isn’t sure if a resolution will ever be found.

A few people have called me a hero because I gave a speech in German. My act of “heroism” pales in comparison to Kim. The few days I spent with Kim in DC reminded me of different everyone’s Essure story is, and how different the suffering is for all of us. For Kim, some days are better than others; some days she is able to hide that she isn’t feeling well. Then there are the days that she just fights to function. We were talking about yoga, and she said “can’t do a downward dog with these elbows.” Something as basic as extending her arm, something many of us do all the time, isn’t possible because of the inflammation in her joints. She has days where she simply can’t eat; swallowing is uncomfortable. She is okay in the morning, just okay, and that is on a good day. By the afternoon, she is fighting to make it through the rest of the day. In the evening, the umbrella brought with her for the rain became her walking stick.

Last Thursday, I was able to watch my friend Kim as she was a participant in a senate briefing speaking about the adverse implications of FDA approvals. This was the first time I heard Kim speak in front of an audience, and I simply don’t have words to describe how proud I am of her. There was not a dry eye in the room. I knew her story, and she even got me teary. The speech we prepared ended up being too long, so she just ‘winged’ it. She was so genuine, so sincere, and so open with her story, her fight and even her battle.

Kim is my hero and I’m so thankful that the tragedy of Essure brought us together.

Here's the link to her speaking.

Sunday, June 15, 2014

If It Wasn't For My Dad....

Hi everyone,

Its been over a month since I returned from speaking in Germany and the events of that trip are still making news. I actually came down with a horrible pneumonia and was in bed for over two weeks. I had to take three courses of antibiotics and I'm still using an inhaler, but I'm over the worst part, finally.

A reporter from Germany flew to the states and interviewed both me and Erin Brockovich for an upcoming story. That interview was unlike any other I've done since I embarked on a journey against Essure with my e-sisters. We sat in my living room with our shoes off eating pretzels. She really wanted to know more about me and what makes me tick. Its actually thoughts of that interview which have me wanting to share more about how I became the fearless one who just doesn't know how to back down from a challenge. I am who I am because of my dad.

He was the product of dirt poor farmers in Batavia, New York. Sadly, he and his siblings ended up in a children's home because his parents couldn't provide for them. As soon as he was able to leave the home, he enlisted in the military, specifically the United States Air Force where he was a Tactical Munitions Specialist. Those are fancy words to describe someone who built and dismantled bombs and designed guns. He served in Vietnam and a few other lesser known conflicts. Basically, anywhere they needed bombs put together, my dad was there. He served in the military for over 20 years and went close to home, Cheektowaga, New York, to live after he retired.

In June of 2002, my dad started complaining of headaches. A few short months later, in October, we learned after a battery of tests that the headaches were from a malignant squamous cell tumor in his brain. We were told that he had, at more, three months to live. We lost him in December, and even though we knew it was coming, it was the words he shared with him in those few short months that made the biggest impact on who I am today.

My dad made sure he taught me every life lesson he could think of and I'll never forget anything. Things like know the enemy, don't ever be afraid to stand up for what's right (all of us) even when no one wants to listen; if the doors are closed and the windows are locked, bust them down; sometimes you just have to piss people off to get them to listen; don't ever be afraid of failure; never miss an opportunity to do something for the greater good; be the one to do something that no one else can do because someone has to stand up and do it, and if you don't, no one else will; use your head, but act with your heart.

When I was prepping for Germany and when I stood on the stage, it was my dad's words in my head and all of you in my heart... Without these little lessons from my dad, I would have never been able to learn German in two weeks and give a speech in the lion's den.

Sadly, I wish my dad would have been able to prepare me for the hardest part of giving a speech that has gotten so much attention - how to deal with people who are jealous of the attention I'm suddenly getting. I don't want to be the story; the message is the story and the suffering that Essure has caused is the real story. There are even some who think I'm only in this for me and I can't express how much this actually hurts. I sacrificed so much time away from my family working with a public speaking coach and then working with a German tutor so I could give the speech in German or we wouldn't be heard.

There are actually times I wish I wouldn't have gone to Germany. I wouldn't have to deal with the jealousy, I wouldn't have lost time with my family, and I wouldn't have come back with a pneumonia that left me sick for weeks and using an inhaler. The sacrifices I made are huge and its disappointing to see how ungrateful some people are. Then I think of my dad, and another life lesson he taught me - those who really matter will always appreciate what you do for them no matter what.

I wish my dad was here - he'd be the dad wearing an Essure shirt saying that's my girl. Then I close my eyes and just think of him. I can't see him, but I know he's here.

Miss you Dad...