Thank You

I couldn’t stay away for too long.  ;-)  It’s so nice to be back after feeling a little lost these past four weeks.  The disappointment over not being able to be treated by Dr. J., the ER visits and the events that occurred in Boston were all very overwhelming for me and I needed to take a break.  My portacath has since been taken out and I’m back on oral antibiotics and feeling somewhat normal again.  I received so many nice emails and texts from some of you and for that I am so thankful.  Donna from Constantly Under Construction sent me a wonderful book that I read every day and it has helped me get through the most difficult days.  And recently, I received an email that read, one thing I’ve learned from going through this, is that a little compassion can change one person’s life!  You will never know how much your notes have changed my attitude about feeling lonely.  I’ll think of your kindness often.  I was so touched…and to the person who wrote this email and to all of you who have sent me such sweet messages these past few weeks…THANK YOU!  A little compassion goes a long way.  I love you!

And on that note…I found this on Pinterest tonight and thought it was funny and SO true.  I guess I’m a bad ass.

Boston Memorial

We just recently visited the site of the first bombing on Marathon Day, and the memorial that has been set up in Copley Square.  I wanted to share these pictures with you.  The memorial is growing more and more everyday and the businesses on Boylston St. that were closed for over a week have been packed full of people from all over the country, here to show their support.

The first few pictures were taken at the site where the first bomb went off.

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The following pictures were taken at the memorial in Copley Square.  My heart goes out to everyone who was affected by this tragic event.  It is so nice to see all of the people that have come out to support our city.  There were even a few people offering free hugs for those waiting in line to see the memorial.  :-)

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May you rest in peace.

Last stop

This will be my last post for awhile.  I promised an update on my visit with Dr. J. in Washington, DC so here it is!

I left the kids with my husband on Sunday morning and flew to Washington, DC to meet my father who was flying in from Florida.  I was excited to spend the day with him and to explore this beautiful city.  We spent most of the day around the White House and World War II Memorial.  It was a gorgeous, sunny day!  I remember many years ago being able to walk up to the gate across the street in front of the White House.  This is as close as I could get to our president…

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The WWII Memorial was my favorite.  I am so proud of the men and women in uniform who have served our country and to those who worked tirelessly this past week to find the Marathon Bombers.

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My dad and I having a little fun.  :-)  I always thought these pictures were so cheesy…but my dad brings it out in me!

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So now on to the fun stuff.

The next morning we left for the George Washington University hospital to have my port placed.  I was hopeful because I finally felt like I was in good hands and that I was going to get well and also a wee bit nervous about the procedure.  I also felt more confident as I checked in and everyone knew Dr. J.  They all referred to him as an angel…a great guy…a doctor who helps people all over the world.

The doctors and nurses were wonderful and made me feel at ease.  One of the male nurses had me laughing hysterically before I was put to “sleep”.  He told everyone that they were taking care of a super model and mother of two boys so they needed to roll out the red carpet.  At one point, I began to tear up and he held my hand and said, “now, honey, you gave birth to two boys!  What on earth are you crying about.  This is NOTHING compared to labor.  In a few minutes, your bartender will be giving you a very strong cocktail that will make you feel REAL good, so hang tight.”  Then one of the doctors came in and told me that he had Lyme disease twelve years ago and that he knew exactly what I was going through.  He reassured me that I was in good hands.

The procedure was painless and did not take long at all.  I spent an hour in the recovery room and then walked to Dr. J’s office for my first infusion.  That’s when all hell broke loose.

As I was sitting on a table in one of the rooms at the clinic, one of the nurses was showing me how to prepare my antibiotics before my infusion.  I was very tired from the anesthesia I had earlier and then began to sweat profusely.  I felt really sick and asked for a pail and then knelt down on my knees and lost hearing in both ears.  I guess this is what it feels like when you are just about to pass out.  While on the floor, they took my blood pressure and it was 60/40.  After that, I remember the nurse yelling “60/40″ over and over again, possibly to try to get the attention of the other nurses/doctors in the office.  They laid me down on the table and lifted my legs and 3 more people entered the room.  One wiping me down with a towel and another taking my blood pressure which was slowly going back up.  An ambulance was called and off to the ER I went.  The doctors at the ER thought that I had a Vasovagal reaction and gave me fluids.  I found out about the explosions at the marathon while I was at the ER as several of my friends were sending me texts to make sure I was OK.  I immediately called my sitter in Boston to make sure the kids were home and that everything was OK and handed my phone to my father.  I could not deal with what was going on in Boston while I was so far away.

The next day we left for Boston and it was so nice to finally be home.  I gave the boys an extra big hug and did my best to keep the TV turned off.  I was already feeling anxious about my trip to the ER.

The week of the bombings was very stressful for all of us here in Boston.  Many of the streets were blocked off and guarded with military personnel, police officers and media trucks lined the streets with reporters from all over the world.

Throughout the week, I was having episodes where I would feel like I was very close to fainting and spent a lot of time laying down with my legs up.  Then the nausea started and I eventually started vomitting on Friday night which lasted through most of the night.  An hour after Suspect #2 was checked into the ER, I arrived.  As soon as the cab pulled up, I noticed several police cars, FBI agents, SWAT, and several other uniformed officers.  I knew that it was going to be an interesting night.  I was wheeled right past the 19 year old boy responsible for the bombings.  He was surrounded by doctors and police officers.  It was kind of nice to have a distraction that night.

Two nights later, I was discharged.  My doctors suspect that my port is sitting on a vagal nerve which is causing all of my problems and they think that it should be taken out.  I’m making arrangements this week.

I felt as though this was my last resort to getting well so I’m struggling with how to end this post.  I am disappointed.  Embarrassed. Sad.

I want to be able to encourage all of you to continue fighting.  To spread awareness. To stay positive and strong.

I hope that you can continue to do that.  I’m going to take a break from blogging.  My attempts to be Lyme free have caused so much turmoil.  I’ve become the annoying sick girl.  I think it’s time to let someone else drive this bus.

Thank you to all of you who have sent me emails, text messages, tweets this past week.  Your support means so much to me.

xo,

Brandi

A day we will always remember

I had planned on writing about my appointment with Dr. J, but as I was laying in the ER at George Washington University Hospital in Washington, DC, I got the text – Explosions in Boston.  I was shocked and could hardly believe what I was reading.  I quickly dialed home knowing that my husband and I both told our sitters that they could take the boys to the marathon since Rylan was really excited to see the runners.  Thankfully, they were home.  Finn napped longer than expected so the boys were home when the bombs went off on Boylston St.  I am so thankful they didn’t witness any of that.  They are too young.

I’ve seen all of the pictures and am horrified that there are people out there capable of killing and maiming innocent men, women and children.  And, this hit way too close to home.  We just walked over the finish line two days before the Marathon.  We walk down Boylston St. where the bombs went off almost every day.  We live just 7 blocks away.  We will not be able to walk down that street again without thinking about what happened.  My heart goes out to the three children that lost their lives, for those who were injured and for the brave men and women that helped that day.

I tried to walk down to Boylston St. today, but all of the side streets and most of Boylston St. are closed.   My husband took this picture of a makeshift memorial right outside his office.

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And, this is what Boston looks like today:

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Rylan is old enough to know that there is something a little different about our city today but in his little mind, put two and two together and told me that there was an earthquake and a fire at the finish line and that nobody was hurt.

Stay safe and hug your kiddos tonight.

xo,

Brandi

Yolanda Foster’s Speech at the LRA Gala

Yolanda Foster’s speech at the Lyme Research Alliance Gala was very touching. I’d like to ask my family and friends to please watch this.  I feel like she’s telling my story.

Tomorrow I get to tell my own story to the Boston Globe.  They may be featuring me in a five piece story on Lyme disease.  I’m happy to spread awareness when I can. ;-)

Here is Yolanda’s speech:  Yolanda Foster – LRA Gala

One Day at a Time

I have to remember the advice my father gives to me every time we talk on the phone.  Just remember, Brandi.  Take things one day at a time.  I tend to look too far into the future and worry myself silly about all of the things that could go wrong.  That’s exactly what I was doing yesterday when I gave him a call to see how he was doing and found myself crying about how I didn’t think I could go through with this new treatment protocol with Dr. J.  I told him how sick I might get and how scared I was of the possibility of having seizures.  I was afraid I might not be able to drive Rylan to soccer or baseball practice.  I’d be too sick to work on the new home we might buy.  And then I was reminded to slow down and to take things one day at a time.  Worrying about all the “what ifs” was just going to send me down a very depressing path that would get me nowhere.  He’s right.  After a brief prayer we said our goodbyes and I was determined more than ever to stay focused on what was happening that day.  When the scary thoughts entered my mind, I repeated these four words, over and over again…I WILL get better.  I am not afraid.

Student Gets $42M in Tick Bite Case

I am still shocked after reading this story!  My heart goes out to the student that is now suffering from brain damage after a tick bite and I hope that she is able to recover after proper treatment from a Lyme Literate MD.  A handful of her classmates became ill as well, but are doing fine now.

A jury awarded $41.7 million to a former prep school student after a tick bite on a school trip to China left her with brain damage, according to reports.

Dr. Lisa Nagy Speaking April 6th, 2013

APRIL 6th, 2013:
1:00pm – 2:30pm
The Cambridge Spaulding Rehabilitation Center
1575 Cambridge St. – Chapel Room, 3rd Floor
Cambridge, MA – Free parking is located on the side of the building

Dr. Lisa Nagy – ENVIRONMENTAL TRIGGERS OF NEUROLOGIC, MENTAL AND IMMUNE ILLNESSES

You can watch the following videos of Dr. Nagy’s lectures:

University of Pennsylvania Medical School Lecture -

http://lisanagy.com/content.php?id=26

Mold, Disautonomia and Adrenal Insufficiency Lecture at ILADS, Toronto 2011

http://lisanagy.com/content.php?id=27

Nightline Interview –

http://www.youtube.com/watch?v=-gx4zxxi0xQ

 

My Esophagus ;-)

Yay!  I can eat again!  My esophagus is doing very well now and it has been so nice to enjoy eating meals that consist of more than just some yogurt and mashed potatoes!  My GI doctor called today and said that the biopsy they did during the endoscopy came back abnormal so I get to have another one done in about a week or so.  Lucky me.  ;-)  He also said that he was shocked at how inflamed everything was and told me, “you were in a lot of pain, my dear.”  I needed to hear that.  I feel lately, that some people are convinced that these “ailments” are all in my head since I am in the ER or doctor’s office so often.  I would rather spend the day with my kids, thank you very much.  I only write about this stuff so all of you out there with or without Lyme know what it’s like to have Lyme.  I hope that by writing about my experiences, it will help you or your family or friends to be more supportive and understanding and know that our stories are all so similar.  We’ve all camped out at the ER more than once this year or last and we all struggle to get people to understand how sick our little bodies are because most of us look so darn good and healthy!

So now that I have my esophagus back, I am working on organizing the list of supplements I need to take before I start treatment with Dr. J.  He is putting me on a mood stabilizer called Lamictal that I need to start taking two weeks before I have the port put in.  I think they are also supposed to help with the inflammation of the brain while I’m in treatment.

We are also still looking for homes and I hope that we are able to make an offer soon.  I’ve been in over 20 homes in the past two weeks and have fell in love with three.  One is under contract now, so I just need to get my husband to fall in love with the other two and make a decision!

I hope all of you are doing well.  Thank you so much for all of your support and for continuing to read my blog.  It means so much to me.

Goodnight – xo