My Interview on Greater Boston WGBH

My views on unvalidated testing are different and I do not agree with everything that this reporter says about Lyme.  The tests are NOT significantly more accurate as the disease progresses.  A lot of misinformation but happy I said my piece – although A LOT was cut out.

And I just noticed my father posted a comment and was so touched by his message.  I am so lucky to have my parents.  They have been so supportive throughout this whole process and have surrounded me with so much love when I needed it most.  Thank you, dad, mom, Jerry and Yvette.  xo

Comment left by my father on YouTube:
Mrs. Dean is known more intimately by me as I am her Dad. Mostly from afar I have been the observer of the evolution of Brandi’s suffering of Lyme Disease. It has been more than heart-breaking as her Dad to be on the receiving end of phone calls and email messages when she’s been overwhelmed by waves of deep discouragement, depression, and even panic- not to mention caused by her symptoms…in fact have at times even cause my grave fear for her sufficient enough to leave my own work and home to be with her. On one occasion, I traveled to meet her in Washington DC to meet with and discuss a serious treatment regiment and had the experience of a Lyme-related episode that required the calling of EMTs and an ambulance to treat her in a doctor’s office and take her for emergency treatment at George Washington University Hospital where, for a short time I was literally afraid for her life. What I find maddening is NOT that medical professionals disagree over the diagnosis and treatment of Lyme Disease; it is the utter arrogance among MANY medical professionals that make adamant statements to or about patients or Lyme Disease that imply that their own knowledge that “debunks” Lyme Disease is “superior” thus leaving patients feeling like “it’s all in their heads”. Now, I MAY be a little biased…but I cannot describe the sense of pride that I have for Brandi as she refuses to stay down when a monster-wave of Lyme knocks her off her feet; but she picks herself up with the help of her family and reaches out to help other Lyme sufferers with encouragement, hope, prayer, and love!

Acceptance

I have come to realize that I may never overcome this disease – and it’s ok.

I recently had a conversation with my father and step-mother during their visit from Florida and was surprised by my answer when they asked how I was doing.  I have spent the last four years fighting and recovering from Lyme with the hopes that at some point I would be able to kick this thing in remission.  I have told friends and family that I was going to beat this and that I would eventually be off all of my medication.  I have told others that they were going to get better as well.  I just knew it.  A few days ago, I sat in the car with my dad and Yvette and I said:  You know, I don’t know if I am ever going to get better or feel the way that I did – before.  I think I just need to learn to live with what I have.  And, I think I’ve accepted the fact that I may be on medication for a very long time…maybe forever.  I no longer pray for healing and find myself praying for the strength to live with this.  And that was that.  And from that moment forward I decided to just accept everything as it was –  and when I felt too dizzy to walk through the grocery store I told them.  When I was overcome with anxiety and several other symptoms during dinner, I told them.  I said, I’m having some symptoms right now and just thought I’d let you know.  I don’t want you to think that I’m not enjoying my time with you.  I couldn’t believe how much easier it was to just spend that moment with all of my symptoms and enjoy this special time with family.  I wasn’t pretending to feel well and they still had fun with me.

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We were “photobombed” several times by Finn and then took part in some “selfies”…

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We yelled at the top of our lungs under Echo Bridge…

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We roasted marshmallows and made the BEST s’mores…

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And became celebrities overnight at Woodman’s in Essex…

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We fed some baby goats…

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And took way too many pictures to show YOU how much fun we had…

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Thank you, Nana and Papa.

Thank you for making this visit so fun and for accepting the parts of me that aren’t so fun.  ;-)

Oooh Rah!

I had a wonderful Mother’s Day weekend with the boys and was showered with flowers, cake and lots of hugs!  I’m sitting outside watching these little guys play with their friends and I’m reminded of how lucky I am to be surrounded by so much love.  Seeing how happy they are here brings a great big smile to my face.  Rylan is riding away on his  bike that he just learned to ride on Mother’s Day – he’s no longer a city boy – and Finn is happily tagging along on his training wheels.  This is heaven.

Speaking of heaven…I almost died and went there after running the Marine Corp Honor Run on Saturday morning.  It was a 5K race that I had been preparing for for several weeks.  I am NOT a runner, nor do I enjoy running, but I love this race for so many reasons.  I was getting nervous about even running about a week before the race because I was having the worst Lyme flare-up in history.  Major anxiety, muscle spasms and weakness and that feeling of being pushed over when I was standing completely still.  At this point, I knew that I was now running alone.  My running partner (Rylan) decided that soccer is more fun and chose to go to his soccer game – coached by his daddy.  So on Saturday morning, I got in my car and drove to Boston.  Moments before the race, I was shaking.  I was afraid of dropping dead mid-race from Lyme disease.  HA!  Such a silly thought, I suppose, but you all know how it feels when you are sicker than sick and your body is telling you that you’re absolutely nuts for what you are about to make it do….and then you do it.  I felt so weak and almost talked myself out of running…but I looked around me and saw the pictures of soldiers on some of the runners shirts…soldiers who had died in combat.  And the only words that came to mind were, “shit, Brandi!  These very brave men and women died for you.  You are running a 3 mile race in Boston and YOU’RE scared?!”  And so I ran.  I ran my little heart out.  And it rained, and it rained, and it rained…but the Marines singing cadences helped me when I was ready to give up and I accomplished two goals:  Actually finishing the race AND finishing it in less than a 10 minute mile.  Not bad for a former Coastie with Lyme!  Oooh Rah!

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MA Lyme Association – Upcoming Speakers

Hi folks,

We just wanted to inform you about a speaking engagement on 4/27 by Dr. Richard Horowitz in Cambridge that is free and open to the public.

The details are as follows:

Dr. Richard Horowitz
Lecture and Patient Support

DATE: Sunday, April 27th : 1:00pm – 4:00pm.

LOCATION: Cambridge Spaulding Rehabilitation Center – 1575 Cambridge St., Cambridge, MA – Chapel Conference Room

PARKING: Please note that since visitor parking is limited at the center, the alternative would be metered parking on Cambridge Street, so please have a few extra quarters in tow just in case.

PUBLIC TRANSPORTATION: The Rehabilitation Center is a 10 minute walk from the Harvard Square Red Line T station.

Event is free
Donations accepted
No RSVP required

Healthy wishes,
Your Massachusetts Lyme Association (MLA)

 

The Boston Marathon

The Boston Marathon was on Monday and we had front row seats!  The boys made signs that read, “Never give up.  You run” and “Boston Strong” and we brought plenty of water to hand out to the marathoners as they ran by.  What an amazing and inspirational thing to experience with our boys.  I am so in awe of everyone who ran.  There were moments that brought me to tears.  There were several people who ran with prosthetics and I explained to Rylan and Finn what an incredible feat it was to be able to run the marathon and how incredibly strong these men and women were.  I am so, so proud of all of you who ran.  My friend Adrian finished his 17th marathon and always runs for a charity.  Dr. David Crandell from Spaulding Rehabilitation Hospital ran as a guide this year.  These are men with big hearts AND strong legs!  Thank you all for running – whether it was for charity or the challenge – you taught our boys a very important life lesson.  Never Give Up.

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This guy won the marathon!

This guy won the marathon!

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TEAM HOYT – You must read about this father and son HERE.  Such a beautiful story.

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Back in Business!

I’m so sorry for those of you who tried to access my blog and were denied access. My settings were set to private after I had an issue with my Twitter account possibly being compromised. All is well now and I’m back online. I also needed a short break from all things related to the L word. ;-) Since I have become involved with the Lyme community and started our support group in Boston, I’ve noticed I have a tendency to get a little depressed after an event or meeting. It’s hard to hear how Lyme has affected so many people’s lives. It’s especially hard to see people from all walks of life who have been severely debilitated. So, I’ve allowed myself to take some time away – to re-group – and then dive back into all the work we are trying to do to help people like you and me get through this.

I have been doing really, really well. I’m taking hot yoga classes 2-3 times a week, a few bootcamp-like cardio classes and I’m running again. I’m training for my favorite race in Boston – the Marine Corps Honor Run in Boston on May 10th. I’m running with Rylan this year. It’s such an amazing event – honoring the men and women that serve our country. They usually have many of the marines run in formation while chanting cadences and there are always a few service-men who were wounded at war who race as well. That is truly inspiring to watch. This year, they are honoring Captain Jennifer Harris – a helicopter pilot from Swampsott, MA who was killed in action in Iraq. If you’re up for a nice run along the beach with a few soldiers, come join us! Marine Corps Honor Run 2014

I hope that you all are enjoying this beautiful day today and staying strong and MOSTLY healthy!

xo,
Brandi