Lisa's thoughts about Love, Life, Lyme, and Liver disease

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, f...

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...

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...

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 co...

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 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 s he 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. ...