Fatigue, Falling, and Fog.......too many F's.

Oh F.  How I loathe thee.  As you now know from this title, Heather continues to experience extreme fatigue, she has fallen several times, and her brain fog episodes are more and more frequent.  Let's not forget about the mind blowing nerve pain that she experiences every single hour of every single day.  Even with the mounds of meds she takes, her pain is never below a 7 out of 10.

Let's back up for a minute - isn't this a beautiful picture of Heather.  That smile, those dimples, that hair - she is simply beautiful.  What is even more beautiful about Heather is her love for others and her positive attitude.  She tries her best to protect others.  She doesn't want anyone to worry about her.  Well Heather, there is a village of people out there that love you, worry about you, and pray for you every day.

Oh how I wish the title of this blog was "Heather is pain free!!!!", or how about "Heather is working full-time and socializing with her friends."    Never in a million years would I have guessed that Heather would be struggling with her health and that her work and social life would come to a screeching halt.  Dramatic sounding I know, but what Heather is experiencing is neither fair nor normal.  I mean really, who am I to judge or determine what is normal.  I only know that normal doesn't mean dealing with pain 24/7.  A normal life doesn't involve medical uncertainty.  Sure in a normal day everyone experiences  all the ups and downs that life has to offer, but each day shouldn't be a struggle to accomplish the simplest of tasks.

The last few months have been a struggle for Heather.  She is extremely fatigued and sleeps a lot. She has energy for 30 minutes to a few hours, then she crashes and falls into a deep sleep.  It is often hard to wake her and honestly, when she is sleeping I know she is getting some relief from her pain.  People often ask if she is depressed.  Well...... of course she is.  I mean who wouldn't be.  One day you are working for one of the top grossing restaurant groups in the country, working 10+ hour days with energy left over to socialize with your friends.  Then suddenly, this is all taken away from you.  To think it all began with one stupid"f?!?#$" tick bite.   That's it.  One dumb tick.

Never in a million years did I think that over 5 years later Heather would still be sick.

Never in a gazillion years did I think Heather would have a a team of neurologists and they would be doing genetic testing to look for a reason for her deteriorating condition.  My emotional side was afraid to know the answer or even worse, to find out once again that they don't have a clue why she is so sick.   My neurotic side worried about diseases and conditions that I don't even know about.  What?  That's right - that didn't make any sense. Either does Heather's deteriorating condition.

Dr. Lisa did some research later that night, then Dr. Lisa realized that once again she has no business trying to figure out what they are looking for.  If you want to lose some sleep at night - try researching extremely rare neurological genetic disorders.   Dr. Lisa, once again, decided to leave the research to the "real" Doctors.   

The great news is that the genetic tests were all negative - for that we are beyond thankful.  

In my own defense about digging for answers - the internet makes it very easy to find quick answers, but if you are looking for that gloom and doom diagnosis - you can certainly find that too.  I remember after Heather was born and I was trying to come to terms with Heather being born so sick and requiring life saving surgery.  So what did I do without the internet, well I drove to the NIH National Library of Medicine to do some research - that's right - this was LONG before the internet.   The local libraries didn't have the scary information that I was trying to research.  

Boy was I in over my head.  These were real medical journals - not the fluffy internet WebMD articles you can read.  Once again - I quickly realized I wasn't a medical Doctor.  It's really hard when you want to know WHY this is happening.  Sadly, with most medical conditions, we never know the why.  I just want to know what we can do to help Heather.

My sweet Heather is tough.  She tries her damn best to not let others see her in pain.  She doesn't want anyone to worry about her  But anyone that has seen Heather recently can see it in her face, you see it in the way her body moves, and you can hear it in her voice.  So please forgive us if she missed a social gathering or two in the last 5 years.  Heather would have loved to join you, but it's just not always possible.   

Now, given the current Covid virus - we too continue to practice social distancing.

Pray really really really hard for my Heather.  Send her a message - but please don't fret or take it personally if you don't get a response.   It's impossible to text when you are sleeping.

Heather and I want everyone to know that she appreciates all the love and concern.  Heather is a survivor just as I know our country will survive this pandemic.

Stay safe my friends.  Remember to always live, laugh, and love.  I pray that you and your loved ones stay healthy.


xo
Lisa

Thanksgiving 2019 - my rambling thoughts

Lets begin with the positive.  I am so thankful to have spent a fabulous summer weekend celebrating Brianne and Eddy's wedding.   This is one of the thousands of pictures that captured the love and laughter.

Now back to sharing my feelings - It has been three years since Mom has passed and I can honestly say sometimes it feels like yesterday and other times it seems like forever since I heard her laugh, saw her smile, or reached for the phone to call her.

They say that the first year is difficult because you have to experience a whole  year of holidays and events without your loved one.   They say I will find my new "normal."  Will someone tell me how it will ever be normal on my birthday when my Mom doesn't call and sing Happy Birthday to me?  How will it be normal on Mother's Day when I don't have a Mom to spoil?

I must admit, that I am healing, but then somedays it's like BAM -the sadness just hits me.  I was walking into a grocery store to pick up some things for Thanksgiving and I could feel this dark cloud hanging over me, then for no reason I get teary eyed.  I think it happens when I see a Mother and Daughter navigating the aisles.

I think what brought me down this year is that I know I won't be going to Mom and Dad's for Thanksgiving.  We had our last Thanksgiving at the family home last year.  It was bitter sweet.  This year I was hoping to host the family but a kitchen renovation didn't get completed in time.  Thank goodness for my niece, her husband and his fabulous Mom.  She will be hosting us this year.

I was lucky to have had my Mom for so long.  For that I am blessed.  BUT, with that said, I still really  miss her.  My Mom was the one person that I could call and share my fears and concerns about life, especially Heather's health issues.  I could be honest with Mom.  I could tell her how scared I was and she would tell me that everything would be OK.

Let's go back to 1982 - Mom was with me every day when Heather was 6 days old and had major surgery to correct a blocked intestine.   She drove me to the hospital 3 times a day too see my baby in intensive care.  On one of those trips to the hospital I saw people staring at me and smiling and I thought “damn I look good for just having a baby."  Well after traveling from the car and through the hospital and up the elevators, I finally took of my sunglasses and realized I was missing a lens.  Seriously -  Mom never noticed and I, for whatever reason, didn’t see the difference between one sun filled eye and a shaded eye.  We laughed for days about this.  But I digress.

So here I am in 2019 and Dad has been living with me since March 2019.  Having Dad live with me has been such a blessing.  He is always there for me with his sound advice, sympathetic and caring nature, excellent stories,  and he gives the best hugs.

So, this Thanksgiving I am thankful that my Dad is living with us, I am thankful that Heather has such an amazing boyfriend and sweet therapy dog.  I am thankful for the family gatherings that we had this year.  I am thankful that Joe is by my side helping me navigate the curveballs that life throws  throws at us.

And......

I love you and miss you Mom

........if only I had told you a million more times that I loved you.

........if only you could be here for future weddings, babies, birthdays and celebrations.   You would have loved Brianne's and Eddy's wedding.  It was a magical day filled with love.

........if only Heather had been healed or made significant progress towards healing.  We are both comforted knowing that you are watching over us and you would protect her if you could.  We won’t give up hope Mom.  I will fix your Heather.   Promise

If only...........sigh

I wish everyone a safe and healthy holiday season.  Take the time to tell your family that you love them.  Take the time to take care of yourself.  Take the time to enjoy what you have.

xo
lisa

Update on Heather - Praying for answers and a cure.......

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I have been wanting to blog for quite a while now.  As I type this, it has been almost 5 years since Heather was first diagnosed with Lyme disease.  Heavy Sigh. I don't know where to begin.

Heather is one of the strongest people I know.  Every day she deals with unimaginable pain from her toes up to her knees.  Her best way to describe this pain is to imagine a hot piece or metal being jammed into her feet and shooting up her legs.  Yet, even with this pain, Heather manages to move forward with her life as her body permits.

As time has progressed, so have many more issues.  Don't get me wrong - she has days where the pain and fatigue are tolerable - then there are days where she is so fatigued and riddled in pain, that sleeping is her best and only option.

The picture in the blog was taken a few weeks ago.  She looks radiant in this picture.  Honestly, if you didn't know better you would think that Heather is healthy.  I wrote a blog a few years ago that discusses "but you don't look sick" comments that people  make to "healthy looking" people.  You can check it out at the end of this blog.

Heather is dealing with a chronic illness and does her best to not look "sick."  Heather also doesn't like to talk about the conditions and illnesses that she lives with every day.

Let's start with the good news ----  Heather's liver scores have remained stable for over 18 months.  This is fantastic.  Sadly, it doesn't mean that her liver is healed - but the need for a liver transplant may be in her distant future (or maybe there will be a cure that doesn't require a transplant!).  A girl can hope can't she.

Five years ago her journey began with severe pain in her feet and legs and loss of sensation in hands and feet.  It was then that they started do an annual nerve conductivity test that determines severity of nerve damage.  This is where it gets bad.

Heather had another nerve conductivity test done at the end of August and the results were shocking and sad.  Heather was told that the nerves from her feet up to her knees are dead and won't regenerate.  Her doctor mentioned that she is only still able to walk so well because of muscle memory and years of dancing and being so active.  This news somewhat explained the recent falls that Heather has experienced and balance issues.

The doctor ordered more tests looking for something/anything that may provide an answer and in a perfect world a cure.  They took 19 vials of blood from her.  The test results are rolling in and one thing we found out is that Heather has mono.   She had it in HS, then a few years ago, and this fall.  It explains her extreme fatigue and countless hours that she has been sleeping.  My poor Heather can't catch a break.

Per her doctor's orders, Heather is working with a Physical Therapist to help her maintain her strength and work on her balance.  The sessions were so helpful,  however her insurance only covers a few sessions (don't get me started on health care - ugh).   Her Physical Therapist is fabulous and she reached out to Personal Trainers at our gym to see who could best help Heather when her PT sessions expired.  She found her the perfect person.  Heather will meet with her trainer twice a week to work on balance and gait and strengthening.  They will even work with her in the swimming pool.

Well, she had her first session at the gym and felt great.  Sadly, this first session was too taxing and she fell a few times after she left the gym.  It just confirms that these sessions are necessary and will help in so many ways.  It will keep her focused - it gets her out of the house - and it will help her adjust to her balance and gait issues.

Going forward, her medical team and I agree that it is time to obtain another opinion from the Mayo clinic or Hopkins.  She needs to be seen by a team of specialists that can dig a bit deeper into her many issues and figure out why this is happening and what we can do to help her.   Since her liver is stable, maybe they will try additional Lyme treatment.  What I do know is that we are doing NOTHING for Heather except treating symptoms.  This Mama Bear has decided to kick into high gear and get her the help she needs.

Please keep my sweet Heather in your prayers and send any and all good vibes her way.  Heather is determined to keep up the fight and stay positive.  As Heather has mentioned so many times, she wouldn't wish this on anyone.

I am also so thankful for the love and support that Kevin provides to Heather.  He is so patient and understanding.  Pearl is also a loving and devoted pet therapy dog.  She senses when Heather is in pain and comforts her. 

Remember Heather, you have a village of family and friends that love you.

I love you Heather and I will never give up hope.  I will be by your side throughout this journey.

xo
Lisa


https://businessedge-basil.blogspot.com/2015/09/but-you-dont-look-sick.html

Halloween, Grover, and happy memories

Grover - 1989 - Obviously Homemade.  

When Heather was 7, she wanted to dress up as Grover (from Sesame Street) and I made this furry costume out of bathroom carpet type fur.  Sounds awesome, right?  It never dawned on me to paint her face blue, but we did add a  red clown nose, and red lipstick. She even carried around her Grover stuffed animal.

Sadly, NOBODY guessed who she was.  Heather was adorable - the costume, not so much.  But every Halloween it gives us a reason to laugh and smile.

Heather is such a trooper for posting this picture.  I mean come on.  We all have those pictures tucked away from our childhood.

My Mom did make some of my costumes and they were wonderful.  An even better and funnier memory was my Mom walking us around the neighborhood for trick-or-treat, cigarette in one hand and sometimes a glass of wine in the other.  No judgements made here.  Just a sign of a more simplistic time without cell phones to capture those moments best left in your memory.  But I digress.

As for those store bought early 1960s costumes, I fondly remember how awkward they were to wear.   The plastic masks were attached with an elastic band with metal clip that always broke on one side so you had to hold it in place.  Better than that - how about the small eye holes so you couldn't see where you were going.  Excellent memories - fun times - wouldn't trade them for anything.

When I think about Halloween and spooky things, I reflect on things that terrified me as a child:

• SNAKES (you can read my previous blog about snakessss - eww  http://businessedge-basil.blogspot.com/2015/05/hate-and-fear.html
• daddy long leg spiders,
• sleeping alone at night (the foot of my parents bed was the safest and most peaceful place in the house, 
• dark houses, 
• basements (where trolls may live under the stair case), 
• the monster that lived under my bed and could grab my legs if I got out of bed.  Leaping from the bed to the door entrance became an art, and
• so many more that may make me sound like a neurotic freak.  Ha 

Well - happy to report that I have grown up and conquered some of these fears.  I no longer have the dexterity to jump from the bed to the door - but I do have a security system.  Ha.  Take that bed trolls.

Back to Heather and her cute Grover outfit.  To redeem my sewing skills, here are a few pictures of costumes that I made.  Sorry Grover - you are one cute loveable furry guy, but we love looking at my Grover creation and laughing.


Remember to live, laugh, and love.  XO
Lisa

Mother's Day 2019

Growing up I used to spend Mother's day with my Mom, Grandmother, and Aunt Ruthie.  Aunt Ruthie never had children but she was like a mother to all of us.  All three of these strong, independent, generous, and loving women made sure that each and every holiday was special - including their Mother's Day.  We would gather and eat a fabulous meal that they prepared - the house was filled with laughter and we simply  enjoyed our time together.

They never wanted to go out on Mother's Day - they cherished those special times to nurture us. Staying at home also guaranteed eating at that infamous and fabulous kid's table and running around the house playing hide and seek.

Ever since my Mom passed, I  have wondered whether it was selfish of us to let them do all the work on their special day.   The commercialization of Mother's day makes us think that Moms need to be spoiled with flowers, gifts, card, brunches, spa days, etc.

Don't get me wrong - I love all of those, but  I now realize that Mother's day is a great time day to reflect on the love that I received from Mom, Grandma, and Aunt Ruthie and to cherish my most precious gift - my sweet Heather.

Happy Mother's Day in Heaven Mom - oh what I wouldn't do for just one more day.......

And to my sweet Heather.......I am so proud and honored to be your Mom, your friend, your confidant, and your advocate.  

 I am truly blessed to have been loved and to love.

The attached pictures are precious to me.  It shows four generations of love - my Grandmother holding my Mom, my Mom holding me, and me holding Heather.  There are also a few gems.

xo
Lisa

"Mothers hold their children's hands for a short while, but their hearts forever."  

Saying Goodbye to my childhood home

Me and Mom - 1963

As many of you know, Dad has decided to sell his house and move in with us.  We are thrilled and can't wait to create new memories, enjoy sunny days on the lake, and cozy fires during the winter.

I can only imagine how hard it is for Dad to let go of so many cherished possessions, but I know these possessions are just "things."  Dad has 55 years of cherished memories in our home, tucked away in his heart.  

The last few months we have spent countless hours going through every inch of the house to determine what he wants to take with him.  It is a daunting task when you have to clear out a 3-story 5 bedroom house to get it ready for "staging."  Mom and Dad have thousands of pictures in photo albums, lots of family Super 8 film movies, 20+ carousels of slides, several bookcases of books......and so much more.

Dad has been amazing through this process.  I am forever thankful to Lauren and Heather for taking the lead on this task.  You discovered some gems and have been so helpful.  

The house will be going on the market soon and I feel compelled to share some thoughts about my childhood home and share a message to whomever purchases this wonderful home.

To the new homeowners,

I know you are eager to put your own stamp onto this house and make it yours. The first time you set foot into the house you didn't see the childhood home that I grew up in. Instead, You saw a house stripped of our family furniture and beautiful family pictures on every wall, bookshelf, table, and night stand.

The wallpaper that hung in the hallway was removed and the entire house was painted a neutral color to allow potential buyers to see the "bones" of the house - not the possessions.

The house no longer had Mom's cherished British royal collections of plates and mugs in the dining room.

There were no more dog toys stashed in the corner and the chairlift that helped Mom go upstairs was removed.

You probably weren't aware of all the amazing updates to the original house.  The smallest bedroom adjacent to the master bedroom was converted to the large bathroom suite equipped with a jacuzzi tub and beautiful closets.

You never saw the unfinished basement with cement floor.

The dining room now opens up to a gorgeous sunroom that leads out to a gigantic two level deck.

I totally understand that a house basically consists of four walls and a roof. A home? That is a totally different story.  A home is the place where you live and are loved. The place where you create your memories.  It is the place where you are free to be happy or sad and share laughter or tears.

When you move in and are exploring your new house - I hope you find a few of the treasures that we left behind. It may be a picture of the house when it was first built, or a Queen Elizabeth tea cup placed high in a cupboard.  When you find these gems, I hope you understand that we wanted to leave a small momentum of some of our cherished treasures/memories.

Soon, our family home will have become your house. (And I hope, your home.)  I know that my family home memories will stay with me forever, but, I have to be honest and say that  I will miss my childhood home.   It was the perfect home to grow up in.  It was even more exciting to watch Heather and her cousins make their own memories.   Their memories are as strong and memorable as mine.  Why wouldn't they be - we were all blessed to have Mom and Dad (aka Grandma and Bill) to love and guide us.

So, new owners, please take good care of her.  She was good to us and holds more memories than I can share.   All I ask of you is this:  Please love your new home.  It is a wonderful neighborhood, a great location, and the bonus are your amazing neighbors next door - Ena, Sasa, and Marina.  It was comforting to have them next door to Mom and Dad.  They were the best neighbors ever and gave us peace of mind knowing someone else was helping them.   

xo

Lisa

Here are a few pictures that capture some of my memories.     

Mom and Dad gave this house life. They made it into a warm and loving home filled with love, laughter, and life.

Our last family dinner with Mom - Easter 2016 - Mom and Dad loved to host large parties

David, Lisa, and Lauren - 1967

Heather - 1985 - first day of preschool picture - Heather spent weekdays with Mom for 15 beautiful years

First day of school 1968

Lauren and Dianne standing near the infamous prickly bushes - so many comments can be made about those bushes!!!

Halloween 2018 with Dad.

Heather with Aunt Ruthie and GG

What the world needs now is love, sweet love

It's the only thing that there's just too little of
What the world needs now is love, sweet love,
No not just for some but for everyone........

Timmy arrived today!!!!  He flew into DC for the first time and the smile on his face when he arrived just made our hearts swell.  Timmy is the epitome of sweet love.   I was able to get through security and meet him as he exited the plane.  Heather, unbeknownst to Timmy, was waiting in the Terminal.

My 30 minute wait for Timmy seemed like hours.  But soon a steady stream of passengers appeared and there was our sweet Timmy.  The look on his face as he exited the terminal was priceless.  Finally, Timmy was back home with us.  As I was hugging Timmy, a nice woman approached and said "you must be Lisa."  She told me she had a delightful conversation with Timmy and she said she was so thankful that she met him.

Timmy also told me that he introduced himself to the flight attendant and said "Hello, my name is Timothy Loughlin and you get to help me today."  How sweet is that.  Timmy proudly announced that the pretty flight attendant even gave him a big hug after they landed.  

Timmy and I then exited to the terminal and Heather was waiting with sign that said "Welcome Timmy!!."  Timmy was so surprised to see Heather.  He had no idea she was at the airport.  They both cried tears of joy.  People actually stopped and smiled.  Imagine that.

As we continued to baggage claim, Heather, Timmy, and I walked hand-in-hand.  We were giggling, smiling and sharing stories.  I can't tell you how many people paused and watched this precious moment.  It is almost like they wanted to partake in our journey.  They saw the joy and love.

A bonus was arriving home and Mick joining us for the weekend.  Perfection.   Timmy and Lassie's cousin Mick.

I hope you experience some love today.   I will.  As I have said before, everyone should spend a day with Timmy.  Timmy's world is filled with love, not hate.  He doesn't have a mean bone in his body.  He doesn't live with regret or fear.  He looks forward to what tomorrow brings. He cherishes his time with family and friends.  He accepts and welcomes everyone into his life.  

As the song says........What the world needs now is love, sweet love.....No not just for some but for everyone.

xo

Lisa