Everyone should spend a day with Timmy

Timmy with his Dad, brother Joe and God son Dalton

Timmy and his Mother and Timmy with Joe

Joe's youngest brother Timmy is the most amazing, funny, thoughtful, music loving dancer, and compassionate person.  Anyone fortunate enough to meet Timmy, walks away with a smile on their face and a realization that the entire world should get to spend a day with Timmy.  It could be life altering to many.  The compassion, the innocence, the pureness, no hate, no fear, no judgement - just pure and loving.

Timothy was born on Christmas Eve 1957 with Down Syndrome. For the first eight years of his life he fought respiratory complications eight times and his parents could never be sure that he would live.  It was never an option to place Timmy in a state institution (as advised by the medical community); instead he was raised at home in a loving family with his five older siblings.  

Timmy's family lived in NYC and when Timmy was 4 years old he attended the Kennedy Child Study Center in New York City.  When Timmy was 8, the family decided to send Timmy to St. Coletta's School for Exceptional Children in Hanover, Massachusetts.  It was obviously a very difficult decision to send Timmy away to school, but is a decision that they never regretted.  ABC released a documentary in 1966 called "The Long Childhood of Timmy", that studied the family and Timmy's education at St. Coletta's. It was a prime time Emmy award nominated documentary.

After Timmy graduated from St. Coletta, he eventually moved to Connecticut with his parents and worked for over 20 years for the Sheraton Hotels.  Timmy and his parents were inseparable.  The love and bond that they had for each other was beautiful.

In 2014, Timmy's parents celebrated their 70th wedding anniversary, then one week later Timmy's 94 year old mother passed away.  His father's health was frail and Timmy continued to be one of the primary care takers for his Dad.

Sadly, his father passed away in January 2016.  The bond that Timmy and his parents had was incredible and what every parent would want. 

Timmy is passionate about music and dancing.  His favorite performer is Neil Diamond and he loves ABBA.  Every night he listens to his CDs and sings along.  His God son, Dalton, is a DJ in NYC and Miami, so music has been an important factor in Timmy's life.

When Timmy comes to visit us, we have dance parties and Timmy serenades us with his favorite songs (Sweet Caroline, Loving me Loving You, September Morn).  He sings into his fist (aka microphone) and if the song is upbeat, he adds in some amazing rhythm dance moves that sometimes involve gyrating hips (which his mother fondly referred to as obscene dancing).  We all sit and watch and then before you know it, everyone is singing, dancing, laughing, and just living in the moment.  For those few hours, there isn't a care in the world.  We just get to enjoy time with Timmy and he makes everyone feel good.

Thank you for taking the time to read about Timmy.   He brings a smile to everyone's face.  The following links contain videos of Timmy singing/dancing, an article about Timmy and his job,  as well as my blog about Timmy and Lassie.

xo
Lisa

Timmy singing Neil Diamond's Sweet Caroline

Timmy singing ABBA's Mamma Mia

Timmy's Job

Timmy and My Lassie

Timmy and Lassie

Me with Timmy and my daughter (Heather) - Huge Mets fans

One thing I would change

Cold weather doesn't kill the tick that carries Lyme.

But this beautiful snow would kill a delicious Lime.  

Save the delicious lime.  I wish this beautiful snow storm and mother nature would realize the havoc that the tick carries and make it go away forever.  Bye Bye.  Can you hear me slam the door shut!

As for those cute limes- I wish they could survive frost.  My cosmopolitan martini needs a garnish and now I am in the mood for all foods that use limes.

Heather and I love a good snow storm.  The bonus with this storm is that it is during the weekend and I don't have to go to work. 

However, because of her neuropathy, extreme cold is AWFUL for Heather's pain.  My little snow bunny will bundle up and enjoy a few quick walks with her puppy.   Beside the beauty of  newly fallen snow and the quietness of no cars driving, I just feel like a kid romping around in the snow making snow angels, throwing snow balls, and watching dogs leap through the piles of snow.  If I get a bit adventurous and crazy, I go from the hot tub, to the snow, back to the hot tub - in a bathing suit.  Invigorating to say the least.

We are making a big tray of lasagna to share with neighbors trapped by the snow.  Comfort food.  It does the soul good.

For those in the Northeast.  Stay safe and warm. 

xo
Lisa

P.S.  Please enjoy this video of Heather and Lassie going down our toboggan run in 2010.  Also, a picture of him spooning with his best friend, Bishop, after playing in the snow.

 

Frustrated ........but the bread was delicious!

This lyme stuff is beyond frustrating and sad for me.  I can't even fathom how awful it is for my sweet Heather.  She is sick and tired of being sick and tired.   She is determined to not let this disease restrict her, define her, or alter her life style.

 As her Mom, I am supposed to be able to fix this, right?  I try to stay positive, but sadly Heather and everyone who knows me can see my concern.  Lyme disease sucks. 

There, I said it.  Sometimes you just have to let it out.

I hate that damn tick.  

Hate is such an awful word, so I will just say that the I really, totally, without a doubt, 100%, despise/detest ticks.

Heather's restaurant is closed for a few weeks, so she is home for now.  Just seeing her calms me down a bit.  However, it is soooooooooooooo hard to see her daily struggle with fatigue and nerve pain.  Her nerve pain is getting worse, but that was somewhat expected with the cold weather. 

Heather is adding another doctor to her team - a neurological opthamologist.  Heather's perfect pre-lyme vision seems to be not so perfect.  As a precaution, they want her to see this specialist.  In addition, we are talking with her doctors in NY while looking to add a Lyme Literate Medical Doctor (LLMD) in the DC area.

I am scouring the internet for answers, a cure, and the best LLMD in our area.   As with so many diseases, there isn't enough research for the disease and there isn't a cure.  In addition, the testing and treatment options aren't reliable.  The CDC and the IDSA set the guidelines that the doctors and insurance companies must follow.  Bottom line - the Lyme Literate Medical Doctors (LLMD) do not accept insurance.

If the LLMD takes insurance, the insurance company reimbursement policies are dictating the lyme treatment that a patient will get.  Seems pretty stupid now doesn't it.  The doctor spends more time trying to get money from the patient and/or insurance company and less time helping the patient and keeping up to date with the latest and greatest treatments.

The insurance companies don't want to pay for prolonged treatment, lengthy doctor appointments. etc.  The insurance companies follow the awful guidelines set by the CDC which are not the best for the patient.  Just typing that statement infuriates me.  ARGGHHHH

Faced with this bureaucratic BS, a good LLMD usually doesn't take insurance.  They want to treat the patient with the best treatment available and let the patient then deal with their insurance company.  If a patient is lucky, some of these costs may be covered out-of-network. 

This method leaves it up to the patient to fight with the insurance company to reimburse them for the treatment the doctor is giving.  I know it sounds like a scam on the doctor's part - but it isn't.  These specialists are dedicated to helping chronically ill patients, but sadly they are running a business too. Something has to give.  Guidelines need to be updated which hopefully will have a trickle down/up affect that financially helps Lyme patients.

It is so hard to share so many personal things.  We are sharing and telling her story in hopes that it may save someone from this awful journey.  Awareness is key, quick and correct treatment is critical.  

On a much lighter note, Heather and I spent last Saturday making homemade bread from my great-grandmother's recipe.  It takes about 4 hours, but worth every minute that I get to spend with Heather. Punching down yeasty dough is so therapeutic.  Having a flour fight is fun too.  Let's not get me started on how delicious this bread is with good ol' salted butter.  Yummy.  I try to avoid gluten, not because of allergies, but I must admit I do cheat when I make this bread.

xo 
Lisa

Quick to judge

This blog will share an awful experience that we had with a judgmental pharmacist soon after Heather's Lyme diagnosis in December 2014.  

Before I begin, I must admit that the title for this blog could have been "Don't mess with my daughter" or "You said WHAT about my daughter". 

When Heather was released from the hospital, her pain management was a combination of nerve medication and, temporarily, a low dose of Morphine.  The morphine was prescribed to temporarily assist with her pain management.

On the way home from the hospital we stopped at several pharmacies to get the prescriptions filled.  There was a complication with the prescribed morphine dosage.  So we headed back to the hospital in hopes that their pharmacy could fill the prescription. 

We returned to the hospital pharmacy and the pharmacist informed Heather that they did not have the 7.5 mg dosage, only the 15 mg.  Heather mentioned when she was in the hospital, the nurses were breaking the 15mg in half.  Well, a pharmacist can only fill the prescription exactly as ordered and for the exact dosage.  

Doctors cannot call in changes to a controlled substance.  A new written prescription is required.  I had no problem with these rules.  Read on.....it goes down hill fast.

Heather was two hours from needing the next dose of morphine and definitely needing the nerve medication.   Heather was growing increasingly more uncomfortable.  She needed to be home in her bed.  

The hospital pharmacist then proceeded to tell us in a loud voice, for customers to hear, that “he was the father of three daughters, and if it was one of his daughters he would never let them take such a strong medicine. “   Well, good for him.  I guess he is a better parent than I am - NOT.

Shocked by this statement, I told him that Heather was released from the hospital two hours ago with a Lyme diagnosis and this medicine was crucial for any excruciating pain that may occur.

He then said, to my shock and disbelief, "well if she is in so much pain then she should go to the ER."  He then added "she can't be that bad because she should be screaming and unable to walk."  

I was dumbfounded by the sheer audacity of this rude pharmacist who is NOT a medical doctor and CAN NOT prescribe medicine.  He loudly and publicly made judgmental statements and questioned Heather’s degree of pain. 

This self-centered man then told me that he lives in an area of Connecticut with one of the highest percentages of Lyme cases per year.  There was no mention of any family member with Lyme disease. 

Well whoop-dee-doo for him.  He is a dad, he lives in Connecticut, and he is a self-proclaimed Lyme literate expert.  Next time I want to be insulted, I will gladly look him up.  

Let’s be clear about this.  This rude and arrogant man was not the one that sat bedside with my daughter and watched her crying out in pain.   He did not watch the fear in her eyes as they performed terrifying tests.  He did not know that Heather was not on the desired dose of nerve medication and they had to gradually increase the dosage.   I know this sounds melodramatic - but these are the hard cold facts. 

We went home and my brave Lyme patient told me that she really hates taking pain medication and she will get through it.  I of course cried.  That helps right?   Her doctor offered to write a new prescription to be picked up the next day, but Heather declined.  

Heather had some terribly difficult months, but eventually she found a nerve medication that worked, and Heather somehow found a way to work through her pain.  I must be honest – I have never experienced nerve pain, but I know I would not have been so strong and still so nice.  Your typical pain medication doesn't touch nerve pain.

How did this story end?  Well, shame on him for judging my parenting skills.  Worse, he should never judge the pain someone is experiencing. 

…..Let's just say he shouldn't have messed with this mama bear.  

……Let's just say that MAYBE I wrote a letter and maybe I mentioned how he violated the HIPAA rules which guarantee a patient’s privacy about their medical conditions.  

Sure, I am blogging about Heather's Lyme disease now, but she was ready to start sharing her story and spreading awareness.

Mess with my daughter and GAME ON.  I am a bit charged up recounting this story, but Heather and I both have moved on and I am thankful that she only encountered one incompetent and arrogant medical person during her Lyme journey.

I am forever thankful to all the doctors and nurses that have helped Heather.  Their compassion and care has been amazing.  

As for that judgmental and ignorant pharmacist.......well, you know what they say about Karma.  

xo 
Lisa