Making A Difference

Making A Difference

We still can't believe we were chosen to represent stroke survivors for the state of Iowa.  We will be forever grateful for taking part in something so amazing.  It was kind of surreal.  It probably wasn't until we were heading home that we realized what we just did. 

We started the morning joining the entire large group for a breakfast and pep talk before we left for the Capitol.  We heard from the CEO of the American Heart Association and American Stroke Association plus a heartfelt speech by Bob Harper from the Biggest Loser.  It reminded us why we there.  

We were being sent off to talk with our representatives about some important issues that, if passed, will help many Americans.  We were focused on issues such as; The F.A.S.T Act which focuses on Telestroke and making sure hospitals have all options available to help people suffering from a stroke, Cardiac Rehab which has guidelines that make it difficult for people trying to rebuild the strength of their heart to receive the training they need without having to travel absurd amount of miles or jump through many hoops along the way, funding increase to the National Institute of Health for more research and development, and of course to tell them to vote no to the latest version of the healthcare bill as it is written now.  Too many people will go without insurance and having a lifetime cap doesn't make any sense for someone like us for example.  We are young and this could cause us to suffer later in our life when we may need even more insurance.  It is hard not to get political when you go to Washington D.C. but that is all I will get into here.

With all this on our minds, it was time for us to speak to our representatives... or at least their staff. We started at the office of Senator Joni Ernst.  Her staff member was great!  We were seated at a large table with a cabinet near by with a lot of Iowa, UNI, and ISU sports memorabilia.  She listened to everything we had to say and gave us excellent feedback.  The meeting went well.  Next up, we had to cross over to the house of representatives offices.  We visited the office of Rep. Steve King.  We thought we were meeting with him but due to scheduling conflicts we had a quiet meeting with a member of his staff in a room that lacked the decorations that Senator Ernst's office, but reminded us of visiting some of the business offices in the Crawford County area.  This meeting went just as well.  

From here we gathered together at the House of Representatives cafeteria.  Great food with an atmosphere that reminds you that so many things are happening in this building.  It felt alive.  

Sadly, we had to leave Team Iowa at this point.  Our flight time was getting closer and we knew the airport was going to be crazy at this time of the day.  Plus, going through security isn't easy when you are wearing medical devices.  After about a 35 minute search, we got to our gate and we were on our way home.

We are now home and hoping to bring what we have learned back to our community to help build what we have already started.  We can't wait to share our adventure with others and hopefully ignite the fire to keep moving forward.  

Final thoughts on this experience:  We are in awe of how many people are working tirelessly behind the scenes to make life just a little bit easier for survivors and their families.  We met so many wonderful people that we will not be afraid to reach out to in a time of need and we hope they know they can do the same.  And finally, thank you to the staff from the American Heart Association and American Stroke Association, without you we would have never been able to learn, prepare, and do what we just did.  Wow.

You Must Educate Yourself Before You Can Educate Others

You Must Educate Yourself Before You Can Educate Others

Today we are a different kind of tired. We started early this morning going through multiple workshops on how to lobby, how we can help our communities advocate, and many other important subjects about stroke and cardiac care.  Before I can share any of the information that we learned today, I think it would be best for us to try it out first.  What better place than at the Nation's Capitol!  

One of our favorite parts of the day had to be meeting all the people.  So many people are fighting for stroke care.  It brought a new sense of hope to what we are striving for.  We have used this time to network with doctors, nurses, survivors, caregivers, and people working with the American Heart Association and American Stroke Association.  The best part is how welcoming people are to us "newbies"!  

We spent a good part of the day learning the importance of social media and face-to-face advocating.  Plus, it made us realize that we are doing some things right when it comes to getting the word out.  We may have learned a few things that should help us down the road.  Look for that in the future!  

We are calling it a night pretty early tonight but we start even earlier tomorrow and then we have to make our way back to the airport and close out our time in D.C.  People talk this town down and say that no one can get anything done here.  I beg to differ .. people are trying to get stuff done, but politics get in the way.  Let's hope that what we have to discuss tomorrow doesn't get political and our legislatures can work with us to get something special done.

Mrs. Siders Goes to Washington

Mrs. Siders Goes to Washington

After a long day walking through airports and walking the National Mall, we sit here preparing for tomorrow.  I don't want to skip on everything we did today.  Today was the first flight Tess has taken since her stroke.  She said something today I have never heard her say.  She said that she was nervous.  I thought she meant about being in D.C. but it was for a completely different reason.  She didn't want the flight to mess with her and cause another stroke.  It took my breathe away as she sat there holding my hand across the aisle.  After the flight from Sioux City to Chicago, she calmed down a bit.  After that we just had to focus on walking the airports and figuring out Uber.  It always amazes me who we meet along our journey.  Our Uber driver's husband had a stroke 16 years ago.  She was very happy to hear what we are doing and what we are trying to do.  If she were a congress person, she would vote to help us.  HA!

So after we were settled in the hotel and ate a delicious lunch, we set out to see what Washington D.C. was all about.  It did not disappoint.  We walked a large part of the mall and like I said before about who we meet along the way, we came across a man who recently suffered a stroke and his wife.  We got to talking and they too are happy to hear that people on their side fighting to make things right.  It is moments like these that boost up our spirits and remind us why we are doing this.

After a couple hours of walking, we decided to have someone help.  We took a Pedal Taxi!  It was a blast.  The guy knew a lot about the history of D.C. and he made the tour fun!  When we got to the Lincoln Memorial Tess wanted to walk up the stairs.  It was a huge moment for her and one we will not forget.  

We are now back at the hotel resting for tomorrow.  We will spend the entire day in training sessions and listening to speakers.  It should be a great day of learning and networking with all the other people who are filling up the hotel.  Watch out D.C. we are here to change things.

Sometimes Life Gets in the Way

Sometimes Life Gets in the Way

Our apologies for not keeping everyone up to date on what has been going on.  A lot of things have happened and only a few excuses for not keeping up.  First... good news!  The bill passed!  Yes, it doesn't happen often but we were able to get the bill passed on the first try.  Now, it doesn't look the same way it did when we started.  It is a watered down version of it, but it is something and it shows we mean business.  It took a lot of miles, a lot of great conversations, anger, emails, lots of texts, and dedication ... but we have something that makes us proud.  I am not going to fill up space to thank everyone by name, but you all know who you are and what you did to make this happen and we want to thank you.

We were able to go on our first vacation together since Tess' stroke.  We took a road trip to see family in Colorado and Nevada.  We spent time in amazement staring at the beauty of this wonderful country.  Sometimes you forget this when you spend so much time in doctors offices and rehab centers.  

Tess received a device that helps her walk.  The Bioness L300 is an amazing device that helps her complete the process of making a full step.  It has allowed her to move faster and further.  She still wears down, but she is able to get out and do more.  This situation though is a reminder of why we fight for stroke survivor's rights.  This device has been around the medical community for over 10 years but it is still considered an "experimental device."  This allows the insurance companies to deny assistance with the purchase.  We won't go into the price of this device, but we will say that we actually had to have a discussion on if we could afford to help Tess walk better.  Seriously.

Tess is on her last week of therapy.  We knew this day would come, but it is still a tough pill to swallow.  We consider ourselves extremely lucky to have been covered for this long.  She does have a back-up plan though.  She has joined a gym that has a personal trainer.  She goes a couple times a week and she is building strength and balance.  Now .... Aaron on the other hand.  Well ... it wouldn't hurt for him to hit the gym a little bit more!

Volunteering is really starting to pick up.  Tess is helping out at the hospital still.  She bounces around and helps out as many people as she can.  We are trying to help more with the support group by expanding to areas in Siouxland that can't make it to Sioux City.  This process will take time, but the watching your plans come together is one of the best parts.  We are also heading out to Washington D.C. this weekend to take part in the 2017 You're the Cure on the Hill event with the American Heart Association and American Stroke Association.  We have been chosen to represent the state of Iowa at the nation's capitol.  We are honored ... and a little nervous.  We will be listening to speakers, networking with other representatives from other states, and having our voices heard by our elected officials.  

Strike Out Stroke was great this year! Once again we had another beautiful night out at the ball field.  We were able to stress the importance of knowing the signs of a stroke and what to do if we are with someone showing the signs.  The Mega Brain was a hit!  I mean .. .who doesn't like walking inside a giant, inflatable brain!  

So, that is a summary of some of the crazy things that have been going on since the last update.  Make sure to check back Sunday through Tuesday of next week on Facebook, Twitter, or this blog as we try our best to bring you along for the ride as we remind the nation why you .... DON'T MESS WITH TESS!

Quiet Before the Storm

Quiet Before the Storm

As only a few of us are left in the lobby of the hotel the drinks are being poured and stories are being told.  This is normal for our group to end evenings together.  We spend this time learning more about each other.  Plus it is great to just sit back and not focus on anything.  It was a busy day for all of us, but we are ready for tomorrow.  We started the day with great news.  As of right now both bills are out of subcommittee!  This means that we just need to make sure we can get as many legislatures on board as possible.  So what was supposed to be just a typical lobby day to bring awareness to stroke survivors became something so much more.   On that note ... back to enjoying time with our friends.  Wish us luck!

Senate Subcommittee Commits!

Senate Subcommittee Commits!

I know ... the title was a horrible play on words, but it is true!  The Senate subcommittee put in charge of SSB 1147 passed it unanimously.  We are still having a bit of a hang up in the subcommittee for the House, but we are working all angles to get this one going as well.  As time is running out before the cut-off date (March 3) for all bills to be accepted into this year's process, we continue to fight ... while putting on a ton of miles and running on barely any sleep.  It is confusing to explain everything we are going through since we are new at this, but I am sure we will start getting better at finding the correct words the more we get involved.

 We head back down to Des Moines Wednesday afternoon to get prepped for our second "Lobby Day" on Thursday.  To sit back and realize just how far we have gotten already this year is amazing.  We went from talking about it during our support group meetings, casually discussing it with other survivors and their loved ones, and researching the steps it takes to make a difference to where we are today.  Wow!  

We know it will take a long time to make a noticeable change in stroke care, but every step counts.  We are blessed to be surrounded by a group of people who normally should be focused on getting themselves back and not worrying about other people at this time, but have found a different type of therapy all together with the work they have put in.  These are people who have been through it all, so when someone comes to them saying 'we aren't sure how far you can go with this,' they answer back ... "Look how far we have come already, why can't we go any further?"  Continually striving to make a change.

So It Begins ...

So It Begins ...

People kept telling us that they missed the "Tess Updates" on Facebook. Well, we thought this would be the best way to keep everyone updated from now on.  This page will grow over the years and hopefully be used to help guide many people if they are impacted by a stroke as well.

We plan on posting videos that include other survivors stories, interviews with people from the medical field and therapists, and of course where we are in our advocacy.  Plus, we will show you all the good and the bad parts of what it takes to continue to adapt to life.  

So, welcome everyone to Don't Mess With Tess!  I hope you enjoy this page and continue to follow us on this journey.