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

Strength

Finding the strength and courage to get through the day in the midst of a MAJOR flare-up can be so hard.  The symptoms I still experience from Lyme can be so intense and scary.  It often feels as though my body is slowly shutting down.  This week has been especially hard on me as I was symptom – free for a few weeks and suddenly crashed on Monday.  There is really no explanation as to why it happened – I’ve been on the same medications for awhile now.  Regardless, it made me think of what I needed to do to prepare my boys if anything were to happen to me.  I also thought about what my life was like before and I wondered what it would feel like to be free of these lingering and often debilitating symptoms.  Free of the migraine-like headaches, the constant buzzing and vibrations in my head, the heart palpitations that make me so weak and light-headed, the stiffness and muscle spasms in my neck that make it impossible for me to fall asleep and the feeling of wanting to jump right out of my skin – the anxiety is so intense and is like nothing I have ever experienced before.  I wish there was another word for the anxiety caused by Lyme as it is so different than the anxiety one might feel when scared or nervous.  It’s INTENSE and feels toxic.  And during these episodes, I still push myself to run all of the daily errands and make sure I’m present for appointments and dinners I’ve committed myself to and I dress up and put on some make-up and look fine.  So, everyone assumes that I’m fine – because how would I be able to do all of these things if I was so sick.  But I’m struggling and fighting so hard to hold it all together and no one sees me at the end of the night sitting up-right in my bed in a panic.  My body so stiff and weak, my hand clutching the back of my neck, holding it tightly to try to control the muscle spasms.  The awful creepy-crawly sensations through my body.  And now the pain.  No one sees the tears or hears me frantically praying for God to make it all go away.

But somehow, somewhere, I am able to find the strength to make it through the night.  I fall asleep and wake up to a new day.  And on a good day, I am able to leave everything that happened the night, days or weeks before – behind me.

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In Fear of Fun

cosmomom1:

Thank you, Lyme Whisperer for putting so perfectly into words what it’s like to live with Lyme disease.

Originally posted on lymewhisperer:

In fear of fun I live
For Borrelia will pounce
When I’ve exhausted my energy
Every last ounce.
Dizzy and light-headed
Weak in the knees
Numb and scared
Unable to breathe.

Somehow “everyday” life
I can for the most part manage
Exercise, commuting, cleaning
A full-time job, cooking and practices.
Homework and laundry
Groceries and games
More, more, more
And more of the same.

BUT throw in anything on top
Anything at all
The balance is tipped
Damn it all.
Like packing for vacation
Let alone the trip
For the added endurance it takes
I am not well equipped.

Remember DisneyWorld?
And the stroke-like attack?
Borrelia at her finest
Though I fought back.
I’m in fear of fun now
For what it brings
Fatigue, overstimulation
And a body on the brink.

Business trips, business trips
Long hours and days
Jet lag and marathon meetings
Make for Lyme haze.
Drinks and…

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Clean Eating and the Paleo Diet

I have been telling myself for several months now that there is NO way I could possibly go on the Paleo diet, even if it means it will help me feel better.  I am STARVING now just thinking about the idea.  I know a few people now that swear by it and believe that it has helped them recover from an various illnesses.  I have spent many days reading through Paleo recipes and unsuccessfully tried to put together a list of meals and a grocery list that would get me through just one week.  I have failed MISERABLY many, many times.  So, Sunday evening, I finally decided to try again.  I gave myself a goal…at least ONE Paleo meal a week.  I’m going to EASE my way into this diet and will eventually (hopefully) become a full-blown “Paleo-ist”…or whatever you might call someone who eats lots of spaghetti squash and sweet potatoes.  If any of you know of any good sites to help me out, feel free to comment below or send an email.  I need help!!

I am so proud to present you with my very first Paleo dish that I found on Pinterest.  Speaking of Pinterest…it’s addictive.  Seriously guys.  I have over 1,000 pins and I think I’ve actually used 4 of them.  I can’t stop PINNING.

This recipe was from the Paleo Pot and was so easy to make.  That’s why they call it the “Stupid, Easy, Paleo Spaghetti Squash and Meatballs”.  My kids even liked it!

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It didn’t photograph well, but it was SO good.  I think next time I’ll make my own spaghetti sauce instead of using the canned sauce.

I also made a healthy, spinach salad with strawberries, avocados, almonds and gorgonzola cheese (cheese is not allowed on the Paleo diet-see I’ve already cheated) served with a poppy seed vinaigrette.  This recipe came from Gimme Some Oven and I found a list of “Paleo Friendly” foods on the Ultimate Paleo Guide blog.

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The salad was amazing!

This was lunch I pulled together for myself and my very sweet friend, Amanda.  Take out the cheese, sushi, crackers and french baguette and you’ll find yourself another Paleo meal.  See why I’m starving??

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Amanda

But a gluten free mousse cake is ok, right?

If you are on the Paleo diet and have any advice or resources that might help, PLEASE send them along.  I would love to hear from you!

xo,

Brandi

MA Lyme Association – Meeting Saturday, March 1st

Originally posted on Cosmo Mom with a Twist of Lyme:

DATE: Saturday,  February 1st : 1:00pm - 3:00pm. Future meetings will take place the first Saturday of every month at the same time and location.
LOCATION: Cambridge Spaulding Rehabilitation Center - 1575 Cambridge St., Cambridge, MA - Chapel Conference Room (Once inside the main doors, simply ask security for further directions to “Neuromuscular Infections Treatment & Rehab Interest Group,”)
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.
Upcoming events
Saturday, March 1st: Richard Longland will 1) present a chapter of his interview with Dr. Alan MacDonald titled “Why Am I Still Sick?” followed by a Q&A session,  2) provide a 50 minute slide  presentation on biofilms, and, time permitting, 3) show a clip from Dr. Eva…

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Frequent Flyer Program

If the ER had a Frequent Flyer Program, I would be a Platinum member.

I spent a little time in the ER last week after having an allergic reaction to my Bicillin injections.  I had my first injection about two weeks ago and was fine except for a bloody nose the next day.  I have never had a full blown bloody nose so it seemed odd but I certainly didn’t think that the injection had anything to do with it.  My second Bicillin shot was about 4 days after the first one and other than the pain in my buttocks and leg that made me limp for the next two days, everything seemed ok…until the following day.  I woke up with another bloody nose but I still didn’t think that it had anything to do with the shot.  At around 3:00pm I started having heart palpitations that made me very light headed and then that evening around 10:30pm, I woke up with my heart racing, my body numb, extreme anxiety, and my throat felt like it was closing up and I was having difficulty swallowing.  I was slightly disoriented and I thought, why in the world can’t these things happen during the day while the kids are in school??  But, I was scared.  I knew that I was having a very bad reaction to the medication and immediately called the ER to let them know my name…and that I was a Platinum member.  Of course I’m dreaming when I hear them say that I will be bumped up to Fast Track and will have a doctor waiting for my arrival.  So off I went after calling our babysitter to stay with the kids.  The following morning, I woke up wheezing and had heart palpitations throughout the day so I did my best to rest and not to worry too much about what was happening to my body.  It took about 3-4 days before I felt normal again.

I know I’m making light of what was a very frightening experience for me, but I’ve learned that what helps me best in dealing with these annoying occurrences is having a sense of humor about it.  I am now seeing a new doctor that has a record of getting people well and helping them get off antibiotics when the time is right.  She was also treated for Lyme and has a child with Lyme as well.  She is very knowledgeable and responsive and I feel much more confident about my road to recovery.

And last, I would like to thank you for your comments and emails.  I’m sorry if I have not yet replied recently.  Just know that your notes mean so much to me.

Have a wonderful day!

B

Massachusetts Making Historical Step for Lyme Disease, Help Them & All of US

Originally posted on Katina Makris:

News Release

Feb. 6, 2014

Governor’s Community Innovation Challenge Awards $111K for State’s First ‘Tick-Borne Disease Network’
Funds support tick testing by UMass Amherst laboratory free to residents of 32 towns

AMHERST, Mass. ­- Massachusetts Secretary of Administration and Finance Glen Shor announced today that the Bedford, Mass. Board of Health, on behalf of 31 other partner towns, will receive $111,000 from the governor’s Community Innovation Challenge Grant program to form the state’s first Tick-Borne Disease Network (TBDN) for surveillance of ticks and tick-borne diseases. The announcement was at the Massachusetts State House.

Towns will use the Laboratory of Medical Zoology (LMZ) at the University of Massachusetts Amherst, which will receive, identify, test and report the occurrence of ticks and associated diseases to residents, their boards of health and the state Department of Public Health. Medical zoologist Stephen Rich, LMZ director, helped to craft the proposal for Bedford. He says…

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Being Me

I spent the weekend home in bed with the flu and thought it would be a good time to try to write a post for this blog.  I have had so many mixed feelings lately about what to post.  Since my article came out in the Boston Globe, there are now more people I know who read my blog and for some reason it makes me really uncomfortable.  Some are former work colleagues, friends of friends, my husband’s friends, doctors and some are people that work in some of the local hospitals I frequented when I was very ill.  It was easier to write about how I truly felt when I knew that I was only writing for others that were going through similar experiences…and for my closest family and friends who “stopped by” to read how I was doing.  I’m really sensitive at heart and the thought of people we know (especially neighbors) reading something so personal, terrified me.  The thought of someone judging me for being so open about my feelings and sharing such personal details of my family’s life, terrifies me even more.  It took several weeks to write this and I finally came to the conclusion last night that I need to stop worrying about what others think about me and this blog.  I need to push those feelings of insecurity aside and focus on the purpose of these posts.  I need to continue to be honest and understand that posting about how sick I feel or how hard my day is, doesn’t mean I’m being negative.  I am so much better but I still struggle every day…and it’s ok.  It’s ok to struggle.  I think it’s the daily struggles that make us all stronger in the end.

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Dr. Horowitz’ New Book

I just got a signed copy of Dr. Horowitz’ new book, “Why Can’t I Get Better?  Solving the Mystery of Lyme & Chronic Disease”.  I started reading it yesterday and so far it is very good and very easy to read and understand as a patient.  It’s thick though – Over 400 pages long – so it will be awhile before I can post my review!

His publisher wrote the following:

Why Can’t I Get Better?, a groundbreaking new title by Dr. Richard Horowitz about diagnosing and treating individuals suffering from Lyme Disease, is publishing 11/12/13 from St. Martin’s Press.  Having treated over 3,000 patients with tick-borne diseases over the past fourteen years at Hudson Valley Arts Center in Hyde Park, New York, Dr. Horowitz is revered as one of the country’s leading experts on chronic illness. And, now that the Center for Disease Control recently increased its official count, in August 2013, of Lyme Disease cases in the US to 300,000 –ten times the previous number! – the time is upon us all for, not only the Lyme community, but the general public, to learn about and embrace a new plan of action for sufferers.  With numbers like this, I’m sure we all know someone who is suffering with the disease or a chronic illness.

In his new book, Dr. Horowitz, a board-certified MD specializing in Internal Medicine, has mapped out a 16-point Differential Diagnostic Map to treat patients with Lyme disease, and those suffering from overall chronic illnesses.  He introduces MSIDS, or Multi-Systemic Infectious Disease Syndrome, which provides a new lens on chronic illnesses that may prove to be the missing link in an effort to decrease the number of Lyme cases, and chronic illness sufferers, in the US.  And, he covers in detail Lyme’s leading symptoms and co-infections, including immune dysfunction, sleep disorders, chronic pain, and neurodegenerative disorders.

Why Can’t I Get Better? is an all-in-one source for patients of neurodegenerative disorders, helping them identify their own symptoms and work with their doctors for the best possible treatment options. 

You can order a copy HERE.

Horowitz