The good, the bad, and the ugly

The good news is that Heather was home for Christmas.  We had quality family time with my parents - and that gift is priceless.  It was also great to spend time with Heather's boyfriend, Kevin, and her puppy, Pearl.

The bad news is that her neuropathy and fatigue issues are worse than they were this summer.  

The ugly would be that damn tick that is responsible for all the bad health issues that Heather is dealing with.

The good news is that Heather loves her new job and she still enjoys the off season quiet beach season.  There are probably 90% fewer people at the beach during the winter.  Kind of a DUH statement.  You can still get some spectacular beach days, but the wind off the ocean is brrrrrrrrrrrrrrrrrrrr freezing cold and that in itself is bad bad bad for Heather's neuropathy.

Some bad news (actually more annoying than bad) is that Heather had to deal with some crazy home repair issues that involved way too much time before and after work.  Instead of catching up on sleep and resting, she was dealing with some time consuming, intrusive and annoying things at the cottage.  Thank goodness for her good friend Derek.  He did so much to help Heather and and I am forever grateful for that.  In a perfect world, I would be retired and would have been able to go down for a few weeks to help Heather deal with the cottage.  The good news though is that Heather and I both have great jobs and that is something I never take for granted.

More good news is that Kevin is going to be with Heather to ring in the New Year.  Heather, Kevin, and Pearl will start off 2016 with love, laughter, and new beginnings.

Speaking of Pearl, it isn't until you have a puppy that you remember how much energy they have.  Let's just say that she broke out of her metal crate while we were at brunch.  She didn't destroy anything, she just wanted to see if Heather was still in the house.  This energetic puppy also scaled a four foot brick wall to then scratch on the front door to come inside.  Yep - she wanted to be with Heather.  Pearl is a rescue and she has separation anxiety issues when Heather is away.  I get it.  I am not a rescue, yet I get a bit crazy if I don't see Heather every few months.   

The good news is that Heather is working with new doctor in North Carolina who is talking with the NYC medical group.  This will mean more blood work and adjustments or additions to meds.

What is really bad and ugly are the way that the Centers for Disease and Control Prevention (CDC) and the Infectious Diseases Society of America (IDSA) set the Lyme guidelines which are followed by the medical community and health insurance companies.  The CDC and IDSA maintain that Lyme disease can be treated with short courses of antibiotics and that persistent infection is rare or non-existent.   Lyme patients that were not diagnosed in the early stage can tell you what an ignorant and stupid statement that is.  You know the saying: "Walk a mile in my shoes.  Don't judge another person's life until you've been forced to live it."


When Lyme isn’t detected in the early stages, it becomes Chronic Lyme, a condition which the CDC and IDSA both deny even exists. They will continue to deny it, because if there’s one thing insurance companies hate, it’s chronic disorders they have to spend time and money treating. Therefore, a panel with ties to insurance companies gathered to write up official Lyme guidelines that assure patients are only allowed a few weeks of antibiotic treatment and are not to be diagnosed with Chronic Lyme Disease (even if clear symptoms persist and invade the nervous system).

The good news, is that I will stop my ranting, for now, this blog went from good, to bad, then ugly.  I will step down from my soap box and stop giving my opinions about the politics, red tape, and games that corporations play when it comes to health care issues and what is best for a patient. 

Heather is a good person.  Contracting Lyme disease was bad for Heather.  However, she is determined to not have this ugly disease destroy the beautiful, kind, hard working, and caring person that she is.  

One of my wishes for 2016 is that Heather continues to heal from Lyme and that she has more good days than bad days.  She deserves that.  Actually all good people deserve that.  

Happy New Year.  May 2016 bring everyone love, laughter, happiness, and good health.

xoxo
Lisa

Christmas 1959

Santa looks intoxicated and I am terrified.  Love this picture and that my parents sent this card to family and friends - hysterical. 

Happy holidays to all - may they be filled with love, time spent with family and friends, and more memories to tuck away.

xo
Lisa

Happy Birthday to me!

The best things in life aren't things.  Yes, it seems so simple, but it makes so much sense to me now.  I have grown to realize that what really matters are the people that we love, the people that we help, and memories that we make.  When I was younger, I used to have a BIG list of "things" that I wanted (not needed) for my birthday and Christmas.  Except for never getting a pony, I was a very fortunate young girl to have such a loving and generous family.  

However, with age comes wisdom and I now realize that the most precious gift to me is time.  Time with family and friends.  Time to learn new things.  Time to help others.  Time to sit back and remember how truly blessed and lucky I have been. 

If I could ask for anything, I would like to go back in time when my beautiful grandmother and her sisters were alive and we could sit around the dinner table and share stories and I could introduce them to the newest members of our family.  Since that can't happen, I try to learn from their example.  Family was the most important thing.   

Growing up, our extended family gathered for most holidays and celebrations.  You got together because you wanted to see each other.  It wasn't an obligation - it was a yearning.  The adults would chat in the dining room and anyone under 18 would get to sit at that amazing "kids table".  There weren't  any distractions like today - texting, facebook, cell phones.  Yes, I am that old school girl that prefers real communication.   Pictures were taken, but they were minuscule in the amount compared to this digital era.  Memories were mostly tucked away in your mind and heart.  I wouldn't trade my childhood for anything.

I had a wonderful birthday.  I was able to spend it with family and friends, we laughed, we sang, and we danced.  However, my favorite gift for Christmas will be having Heather home for the holidays.  We will sit around in our matching pajamas, watch romantic Hallmark Movies, bake bread, and just enjoy our time together.  

I see a photo session in Heather's future.  Get ready Heather - time to capture and make more memories.

Thank you Mom and Dad - I am one lucky girl.  I love you both.

xo
Lisa

Cold, Rain, Pain

Heather came home in the fall and I took some pictures of her on our Lyme Awareness patio.  This picture makes me so happy - the colors, her smile, that adorable puppy.  I haven't seen Heather since August and one thing I noticed was that this colder fall weather has been hard on her neuropathy. 

Cold weather is often a trigger for nerve pain.   Over the past few months, Heather has been experiencing more nerve pain in her feet (not just the toes).  She is also dealing with bouts of fatigue and sometimes her body just aches.  She said it isn't like the flu - but more "lyme" like.  With that comes some brain "fog" when fatigued, and overall she feels like crap. She has good days, but the night time is hardest. 
 
She is improving, but to be honest, any little setback scares me.   The medical community has so much to learn about Lyme disease and the protocols for treating chronic lyme are not consistent.   Even using the term "chronic lyme" is debatable by some.  It made me sad to see her in pain and so sleepy.  But I am glad that she can come home and rest. 

As her Mother, it is my job to worry and assure her that everything will be OK.    It just makes me so sad to hear her cry out of frustration with this disease.  However, as I said earlier, Heather is a trooper, she is an amazing patient, and she is determined to stay positive and push forward.  

I love you Heather
xo
Mommy
 

Lassie and the stairs.....

So the truth is that Lassie HATED climbing the indoor stairs.  
He would spin until he was ready to climb or until I told him to go up. 

However, if you throw in a spin command, he looks SUPER intelligent and obedient as he spins and waits for his next command.  

Whew – that was a long explanation for a simply adorable video.  I miss you Lassie.

Lassie and Timmy

Everyone knows that Lassie and Timmy were a team.  I had my Lassie, but people would always ask "where's Timmy?"  Initially there wasn't a Timmy for Lassie.  However, when I started dating Joe, I met his youngest brother Timmy.  Perfect right?

Well, it was better than perfect.  Timmy was the perfect pairing to my Lassie.  Last year Timmy was able to make his first of several trips to Virginia to visit with us.  Lassie and Timmy LOVED each other.  Timmy's favorite thing to do was give Lassie a treat.  When Timmy returned home, I would call him and he would ask to speak with Lassie.  Timmy would talk to  Lassie and with a little prompting from us (I just whisper the word FOX and he barks like a wild man), Lassie would bark back.

I have learned a lot in the few years that I have known Timmy.  I have learned that the entire world should spend a day with Timmy.  Timmy is compassionate, loving, intelligent, funny, gentle, and honest.  He doesn't live with regret, he doesn't have a mean bone in his body, he would never judge anyone, he embraces each day as a gift from God and enjoys it.  Timmy is pure and his thoughts and feelings for other people are pure.  Pure Love.  No hate.  No criticism.  No anger. Peace and peaceful. 

Timmy loves his family, he is a huge NY Mets fan, he listens to his Neil Diamond CDs every night, he loves to go bowling, he attends mass every Sunday, he has won metals in the Special Olympics, he worked for 30 years at the Sheraton Hotel, and he LOVES to sing and dance. 

Joe and I worried about telling Timmy about Lassie's passing away.   We were hoping that Lassie was going to be able to make it until December 12th when Timmy was scheduled to visit.  Sadly that didn't happen.  When we called Timmy that night, we told him that Lassie had been diagnosed with Cancer a few months ago and that recently it became difficult for Lassie to walk and there wasn't any medicine that could make him better.  Timmy was quiet for a minute, then he said that he was glad that he met Lassie, that he would miss Lassie, but we were all lucky to have had Lassie in our lives.  Timmy said he would miss talking with Lassie, but he knows that Lassie isn't hurting any more.  Such faith and strength.

Timmy and I both have December birthdays and last year was the first time we celebrated them together.  Timmy was born on Christmas Eve in 1957.  When we celebrate our birthday's we have one cake that says Happy Birthday Jesus, Timmy, and  Lisa.  After our meal, the dance party begins with Neil Diamond, Frank Sinatra, Tony Bennett, any other music that Timmy likes.   

Timmy then serenades us with a few Neil Diamond and Abba songs.  I love watching him sing and dance.  It makes everyone in the room smile.  Before you know it, everyone is singing and dancing.  Some of our dance parties have lasted until 2am.

When Timmy visits us next week, he has decided to dedicate one of his songs to Lassie.  It won't be the same without Lassie there to great Timmy, but I know that there won't be a dry eye in the room when Timmy sings his song to Lassie.  They will be tears of sadness, yet tears of joy.  Joyful and thankful that Timmy is there to comfort us, teach us, guide us, and love us.  Joyful that Timmy and Lassie created a bond that will last a lifetime.

Thank you Timmy for loving my Lassie.   You two were perfect together.

xo
Lisa