Living at the beach and living with Lyme

Just the simplicity of the statement - "living at the beach."  Maybe I am living vicariously through Heather, but the thought of living at the beach for the entire summer seems pretty good right now.  Living with Lyme?  Sadly that statement is a reality for Heather.  If I could take away this disease from her, I would in a heart beat. 

Since she was 4 years old, Heather has had the privilege of growing up on the Outer Banks (in Corolla, NC).   So much has changed since the cottage was purchased.  In 1986 there weren't any chain grocery stores or restaurants, strip malls didn't exist, the dunes were only a few feet high, there weren't any life guards, bon fires on the beach were allowed (or maybe I didn't follow the rules), and the herd of wild horses roamed free. 

Our little cottage was the norm, but now we are dwarfed by the McMansions with an elevator, a private pool,  a hot tub, fireplaces, ten bedrooms, twelve bathrooms, a gazillion TVs  etc.   

A few things have remained the same though.   The ocean is still clean and unpredictable,  you can find conch shells, sand dollars and starfish, sea turtles lay their eggs on the beaches, and my sun lover can sit for hours on the beach soaking up the sun. 

One thing has changed about life at the beach.  There is a possibility that you can become infected with Lyme disease.  The media and even the CDC portrays Lyme as a Northeast disease.   However, the reality is that Lyme Disease is prevalent across the United States and throughout the world.  Lyme disease has been found on every continent except Antarctica.

In 2014 Heather lived in NYC, visited home in Falls Church, Virginia and spent 10 days at the beach house.  Of these three locations, NYC and Virginia are ranked in the top 15 states with the highest rate of Lyme cases.   Statistically speaking (love my nerd talk), it makes more sense that Heather was infected by Lyme in VA or NY.  

When Heather reflects on last year, she really believes that she was probably infected at the beach house in June 2014 - six months before her diagnosis.  Heavy Heavy Heavy Sigh.  Looking back, she realizes that the beginning signs of fatigue started in the summer after her trip to the beach. 

Heather loves living at the beach.  Living with Lyme?  Well - let's just say everyone knows the answer to that stupid question.  However, we are determined to continue to spread awareness, participate in fund raisers to help raise money for research, and stay educated in the latest research and treatment options.

Continue to enjoy the sun and surf Heather.  You deserve this time at the beach. 

Change.......

I personally don't deal well with change.  Heather is different than I am.  She has been more of a risk taker and more open to change.  However, with her Lyme diagnosis, she was not able to control so many things that are changing in her life.  Change is difficult when you initiate it, but even more challenging when you didn't.

Since she was diagnosed in December, Heather was able to return to work for one month.  She was anxious to resume her "normal" life, but her body wasn't.  It took three months to get her on a nerve pain medication that didn't have awful side effects.   Her first nerve medication exasperated her cognitive and gait issues.   It had a sedative effect on Heather, it made her anxious, it caused slurred speech, she was unsteady when walking, she had extreme crying bouts, and it didn't give her enough relief from her nerve pain.   As with lots of meds, you have to build up to a therapeutic dose, and if that doesn't work, you have to slowly wean off the medicine.  Bottom line, it was not a fit for Heather.

So she changed to another medication.  It too did not provide the necessary relief and had very sedating side effects.    Heather is on her third medication for nerve pain and, fingers crossed, it appears to be working.  No nasty side effects.  She still has some loss of sensation in her feet, randomly she has tingling in her toes, and the nerve pain is sporadic.   To quote Heather, "I am never pain free, but I have good days and bad days."

In addition to her diagnosis, one of Heather's changes was quitting work and taking time to heal.   This summer she will be subletting her apartment and going to the beach to continue healing, rest, work part-time, and bask in the sun.  Quite a change from the hustle and bustle of the city.  One of the hard things will be leaving her amazing group of friends that have supported and comforted Heather.  As hard as it will be for her to say goodbye, I know that these are friends for life.  

As with all of Heather's changes in her life, I know that she will deal with this one with the same strength and positive attitude.  

I know how hard this has been for Heather and I will continue to support her as she fights this disease.  Heather never ceases to amaze me.  She has handled this with such grace and dignity.  I know that every positive change she is making right now will enable something else to change for the better. 

I love you Heather - we will get through this together.


Tick Removal - The first thing to know is how to properly remove a tick. Any manhandling of the tick such as squeezing it, putting Vaseline over it, or holding a hot match to it, will increase the chance of transmitting bugs.

The tick should be removed with a fine pointed tweezers, grasping it from the side where it meets the skin, and gently pulling in the opposite direction from which it embedded.

While the longer the tick is attached, the higher the risk of transmission, it is possible to get Lyme disease even if the tick is attached for less than 24 hours. The salivary juices of the tick, which contain anticoagulants, anesthetics, and immune suppressors, also contain microbes that can be injected at the time of attachment. Transmission of bacteria by ticks attached less than 24 hours has been well documented in animals, and a recent paper last year documented that this can occur in humans as well.

It is a good idea to save the tick in case you want to get it tested for Lyme or other pathogens.

The first thing to know is how to properly remove a tick. Any manhandling of the tick such as squeezing it, putting Vaseline over it, or holding a hot match to it, will increase the chance of transmitting bugs.
The tick should be removed with a fine pointed tweezers, grasping it from the side where it meets the skin, and gently pulling in the opposite direction from which it embedded.
While the longer the tick is attached, the higher the risk of transmission, it is possible to get Lyme disease even if the tick is attached for less than 24 hours. The salivary juices of the tick, which contain anticoagulants, anesthetics, and immune suppressors, also contain microbes that can be injected at the time of attachment. Transmission of bacteria by ticks attached less than 24 hours has been well documented in animals, and a recent paper last year documented that this can occur in humans as well.
It is a good idea to save the tick in case you want to get it tested for Lyme or other pathogens.
- See more at: http://www.ilads.org/lyme/what-to-do-if-bit-by-tick.php#sthash.itPw4vT2.dpuf

The first thing to know is how to properly remove a tick. Any manhandling of the tick such as squeezing it, putting Vaseline over it, or holding a hot match to it, will increase the chance of transmitting bugs.
The tick should be removed with a fine pointed tweezers, grasping it from the side where it meets the skin, and gently pulling in the opposite direction from which it embedded.
While the longer the tick is attached, the higher the risk of transmission, it is possible to get Lyme disease even if the tick is attached for less than 24 hours. The salivary juices of the tick, which contain anticoagulants, anesthetics, and immune suppressors, also contain microbes that can be injected at the time of attachment. Transmission of bacteria by ticks attached less than 24 hours has been well documented in animals, and a recent paper last year documented that this can occur in humans as well.
It is a good idea to save the tick in case you want to get it tested for Lyme or other pathogens.
- See more at: http://www.ilads.org/lyme/what-to-do-if-bit-by-tick.php#sthash.itPw4vT2.dpuf

The first thing to know is how to properly remove a tick. Any manhandling of the tick such as squeezing it, putting Vaseline over it, or holding a hot match to it, will increase the chance of transmitting bugs.
The tick should be removed with a fine pointed tweezers, grasping it from the side where it meets the skin, and gently pulling in the opposite direction from which it embedded.
While the longer the tick is attached, the higher the risk of transmission, it is possible to get Lyme disease even if the tick is attached for less than 24 hours. The salivary juices of the tick, which contain anticoagulants, anesthetics, and immune suppressors, also contain microbes that can be injected at the time of attachment. Transmission of bacteria by ticks attached less than 24 hours has been well documented in animals, and a recent paper last year documented that this can occur in humans as well.
It is a good idea to save the tick in case you want to get it tested for Lyme or other pathogens.
- See more at: http://www.ilads.org/lyme/what-to-do-if-bit-by-tick.php#sthash.itPw4vT2.dpuf

Keeping things in perspective......

Heather went down for her early evening walk on the beach and saw two horses, with riders, strolling down the beach.   One of the horses was being led by a third person.  Keep in mind that the wild horses have been corralled north of our beach for at least 15 years and of course, you can't touch or ride them.

Heather's curiosity was piqued since there aren't any stables on the Outer Banks.  Heather then walked closer to get a better look.  She said it was so beautiful seeing these people enjoying an evening ride on the beach.  Heather asked if she could take a picture and they gladly said yes.  Then Heather found out that one of the riders was a teenage girl and her horse ride on the beach was made possible from the "Make a Wish Foundation."

Heather was so touched and humbled by this.  The looks on their faces was magical.    When she told me this beautiful story, I must admit that I teared up.  Heather also admitted that she shed a tear when she walked away.

Sometimes in life you see something so simple and beautiful, and you realize that maybe your day, your week, your health is not as bad as it seemed just a few seconds ago.  Kind of puts things in proper perspective.

I will say a prayer for that beautiful happy rider.   The Make a Wish Foundation has been making dreams come true for so many children.   Out of respect for their privacy I have blurred out their faces.  I hope this shadowy picture still captures the love that so many people have for that beautiful girl.


What animals get Lyme  disease?

Dogs, horses and sometimes cattle  can get Lyme disease. White-tailed  deer, mice, chipmunks, gray squirrels,  opossums and raccoons can also  be infected.

How can my animal get  Lyme disease?

Lyme disease is spread through the bite of an infected tick (vector). Wild mammals, especially small rodents and deer, can carry the bacteria in nature. Ticks get the bacteria when they feed (bloodmeal) on infected wildlife. The tick can now spread the bacteria to other animals (such as pets) or humans when it feeds (bites)

Lime vs. Lyme

Lyme Awareness Patio

Not really a competition.  Limes win, hands down.  Lyme sucks and Heather refuses to let it win.  Sadly the poor innocent lime, that is a frequent garnish to so many wonderful cocktails, is now a color that I use to help spread awareness to Lyme disease.  Who knew that lime green would be a focal color in our lives. 


In May, there were numerous pictures showing people taking a bite out of Lyme.  Puckered faces galore were biting into these bitter limes.  I too have shared pictures of family members with lime green painted nails, Heather with her green ray ban sunglasses, shells on the beach spelling out L Y M E, and a vase of limes.

Aunt Ruthie and Lisa - 1959

Recently I have decided to add "artistic" painting to my "oh so few" creative art projects.  The back story to this is that I live in a family  home built in the 1950s.  One of the patios was made with these beautiful colored cement circles.  Over the years, the color on the cement has faded and the cement is crumbling.  

 
Many years ago, I decided to slap on a new coat of paint.  The best part is that I use up random colors that have accumulated over the  years from indoor paint jobs.  I also frequent the Home Depot paint department for cans of returned paint that they resell for $5 a gallon.  

Keep in mind I don't care what type of paint it is (gloss, satin, outdoor, etc).  I would like to say that I have a color pallet theme, but the reality is anything works.  

The painted circles last for a few years and then they fade.  Then, just like magic,  a new coat of paint makes it all look better.  Sort of like my hair dye - did I just admit to that? HA.


So, this year for Mother's Day, Heather told me that she wanted to paint the patio and use a lime color for Lyme Awareness.  Off we went to Home Depot to pick out a bright and happy lime green paint (that we paid full price for - a great investment I might add).   

The painting project has begun.  I will be adding Heather's painted hand prints when she comes home.  The hand prints will make me smile, just like the her plaster of paris hand prints from preschool.  Lassie may also "accidentally" walk in some non-toxic paint and step on a few stones to show his support too.  

Before 2015

I don't think I will be quitting my day job and becoming a painter, but this little project brought me a lot of happiness.  

Check out our progress.  

I think this lime is a reflection of the happy times to come - a Lyme free Heather.

 

After 2015

The 21st Century Cures Act, HR 6, passed the US House of Representatives with a vote of 344-77 today, July 10, 2015. The text of  HR 789 (Gibson),  Tick-Borne Disease Research Accountability and Transparency Act (2014), was included as Section 4061 of the Act.

http://www.c-span.org/video/?c4543892/rep-chris-gibson-speaks-support-hr-6-21st-century-cures-act

In the current 2015 Congress, the House Energy & Commerce Committee incorporated virtually intact that Lyme bill's language into its 21st Century Cures, an Act which addresses many health issues, but originally did not include Lyme. 


The Lyme Disease Association (LDA) had extensive input into the development of the passed Lyme language and was integral to its 2014 passage  after LDA amassed  a nationwide effort to unite Lyme groups behind the Lyme bill (HR-789 Gibson, 2014), which saw House passage in September 2014. 

21st Century Cures  now goes before the US Senate. Contact your US Senators today and request their support for 21st Century Cures with the inclusion of Section 4061, the Lyme language.

  6 Attached Images

What I see....

When I look at Heather, I see so many different things.  Since her Lyme diagnosis, there are times that I look at her and, without her saying anything, I can see the struggles and pain that she is dealing with.  Other days I see this happy, carefree, hard-working, beach loving, beautiful person.  As her Mom, I see all of that and yet I still see her innocent face from younger days.  Those brown eyes, those dimples, that hair, that smile…….   

This week I heard a radio broadcast by Diane Rehm.  She hosted a panel of Lyme doctors.  It was wonderful to hear a show dedicated to Lyme awareness.  However, it was difficult to hear the differing opinions about the progression of the disease. Some doctors can’t agree on late stage Lyme and/or chronic Lyme.  One thing that everyone can agree with is that more research is needed.  Also, there needs to be a test to prove that Lyme has been cured/eradicated from your body.

I will continue to educate myself and share my news.  I want to be real though - not a "downer."  Heather is healing, but we have no idea how long it will take.  Chronic diseases are challenging.  I am thankful that Heather is making positive progress.  As I have said so many times, early detection and treatment is key.  Although Heather was diagnosed in the later stages, she was fortunate to have a fairly quick diagnosis.

Thanks for reading.  One day I hope to offer up some pretty funny reading.  Not that any disease is funny, but laughter is sometimes the best medicine. 

Heck, if I am going to be honest, I have some great old stories about myself that are hysterical.  Who doesn't want to relive my braces and headgear in middle school?  Let's not get started with bell bottom pants and tube tops.  Not funny enough, how about my 1980s shoulder pad business suits with ribbon bow ties.  Classy and Hot.  NOT

The link below will take you to the Lyme disease podcast.

https://thedianerehmshow.org/shows/2015-07-08/its-lyme-disease-season-what-to-know-about-contracting-diagnosing-and-treating-the-disease

Just the two of us......

I took a last minute trip to the beach house to spend the weekend with Heather.  She looks wonderful.  She is making the cottage her own with her cute decorations, painted doors, flower pots, and herbal garden.  Heather is bartending at a wonderful restaurant that is 2 miles from the cottage - no stop lights, no subway, just a quick ride in her convertible.  The bonus is that she works in an outside covered bar that features live music every night.  Great food, awesome drinks, friendly staff, casual beach attire work outfits - what's not to like!

She is healing.  One of the many struggles with Lyme disease is chronic fatigue.  As Heather says, "it is good fatigue because I am pushing my body a bit harder and further each day."  There is still some loss of sensation in her feet and she still has sporadic shooting nerve pain in her legs, but she is getting better.
 
Heather deserves this time at the beach.  She has stayed so positive and is determined to get back to her "normal" life.  I cherish our walks on the beach, bike rides around the neighborhood, conversations, laughs, and hugs.  Continue healing Heather.  I will see you again at the beach in August.  Remember, nothing soothes the soul like a walk on the beach. 

 

Check your clothing for ticks. Ticks may be carried into the house on clothing. Any ticks that are found should be removed. Placing clothes into a dryer on high heat for at least an hour effectively kills ticks.

Shower soon after being outdoors. Showering within two hours of coming indoors has been shown to reduce your risk of getting Lyme disease. Showering may help wash off unattached ticks and it is a good opportunity to do a tick check.

Check your body for ticks after being outdoors. Conduct a full body check upon return from potentially tick-infested areas, which even includes your back yard. Use a hand-held or full-length mirror to view all parts of your body