Although it seems like yesterday, it seems like years ago

I have heard so many people talk about a year of firsts after a loved one passes away.  First birthday, first Christmas, you know the drill.  I'll be honest - those firsts really sucked.  It never seems natural to not have my Mom with me.  I know, I know - she is always with me - blah blah blah.  She is watching over me - blah blah blah.

Sometimes that isn't good enough for emotional Lisa.  Sometimes a girl just needs her Mom.  I have more things to tell her.  I want to show her all that has happened last year.  I want her to give me guidance on the curve balls that life sometimes throws at you.  I want her Pollyanna side to tell me things will be fine.  I want her to call me and talk about the mundane things in life.  I want to hear her witty and sarcastic comments about this crazy political world we live in (yep, I had to get political - Mom would have expected that).

I remember when my Grandmother passed away.  Mom was the same age I am now.  I  remember wanting to take away Mom's pain and do things for her that her Mom would have done.  I remember how she appreciated all of my loving attempts, but I now know that these endearing attempts can't replace your Mom.

Only your mom can look at you and know how you are feeling.

Only your Mom can tell you what you were like as a child and share memories you were too young to remember.

Only your Mom can hold you and assure you that everything will be OK even when it isn't.

Only your Mom gets excited every time she hears your voice or sees you in person.  She wants to hear everything little thing that is going on in your world.

Only your Mom can give you that silly, yet wise advice, that you ignore but one day realize she was correct.  Mom never liked my trendy 70s outfits that I wore in high school.  Who was she to question the high fashion look of  bell-bottom high-waisted jeans paired with a tight fitting sparkly shirt and blue eye shadow?  Looking back she may have been right, but I still think  it was  a fabulous outfit to wear to my first Frank Zappa concert when I was 15 years old.  Those were the days - going into the city with your friends to see a concert.  There weren't any parent waiting rooms, and if there were, I am sure I would have lied to Mom and said that Jan's Mom was going and she would wait for us.

Only your Mom would buy you a beautiful wool coat with fur trim, a matching hat and a muff.  Of course you only wore this a few times a year on "special occasions."   Mom loved to dress us up.

Only your Mom would make sure you had a beautiful strand of pearls when you graduated from high school.  I wore them a lot in college with my preppy wool crew neck sweater with my initials embroidered on the front.  Did I follow this classic fashion trend when I started work.  NO.  It was the 80s and I seemed to think that frilly blouses that tied at the neck looked amazing with my big shoulder pad suits.  The stupid bow around your neck was your "jewelry."   Throw in my permed hair and ladies and gentlemen, may I introduce to you a budding young executive.    I can't blame Mom for the permed hair.  Ewww as I type this I can smell the perm solution now.

Only your Mom can tell you numerous times that you should have a more age appropriate hair cut ............screeeccccchhhhh.  I just got whip lash typing that last statement.    Uh uh Mom.  You were my stylist for 13 years and you made some fabulous decisions about my hair styles.     Thanks to Mom I have some classic pictures that I used to hate but now they make me smile.  If you can't laugh at yourself - then you need to lighten  up a bit.  I appreciated Mom's sage advice but, I will keep my long hair.

Mom was the one person in the entire world that could handle the many complex sides of Lisa.  Shocking I know.  In this internet world, I can make myself sound so stable, happy, and balanced.   Well, right now Lisa isn't feeling so strong.  She is a wee bit emotional.  This crap-iversary stuff sucks.

Mom knew my strengths and insecurities.  She knew my shy side (I really do have a super duper shy side - once again - shocking) She knew how hard I worked to be independent and self-sufficient.  But really, when I think about that last statement, I may be an independent contractor in this crazy government consulting world, but I am dependent on my family and friends.  They balance me.  They accept me for who I am.  They love me.

I wrote this blog to acknowledge this crap-iversary.  I really don't want to remember the day my Mom died.

I want to remember the lifetime of memories that Mom and I shared.  I want to remember the  Mom that was always there for me, the Mom that loved me unconditionally.  The Mom that helped raise my beautiful daughter.  The Mom that every single day, demonstrated the importance of family, the importance of laughter, and the importance of love.

I love you Mom and miss you sooooo much.  There isn't a day that goes by that I don't think about you and how lucky I was that you were my Mom.  

I will end this blog with a funny entry that Mom wrote in my childhood memory book.  Only a Mom can be honest - and I love her for that.

Lisa - Age 3 - Lisa is quite a tease.  She has quite the temper - but can be charming and very amusing.

xo
Lisa

Heather and Matthew McConaughey

This will be the first of many blogs as we take a stroll down memory lane with "Heather the Actress".  So please join me for some great memories and funny stories.  I promise it will be light and interesting and not discuss medical stuff.  Shocking, I know.   Of course, Heather has given me the green light to proceed.

When Heather was 14, some of her friends at a community theater group guided her to sign with an agent.  This was Heather's dream.  My job was to make sure she kept on top of her studies.  Side note - The picture shown is one of Heather's first head shots.  So cute and it makes me smile.  So many wonderful memories.  We laugh about the bangs - they were very Beverly Hills 90210.

So here we go - Part 1 - Heather's first movie acting gig in  "Contact"  Starring Jody Foster and Matthew McConaughey.  Zoom in and you can see the movie poster that I "found".    Isn't Jody - errr Heather cute?

Heather's agent booked her as an extra for scenes being shot in front of the Washington Monument.  This was her first gig and we had no idea what to expect.  Of course she had high hopes of running into one of the stars.  

Since Heather was 14 years old, she got to hang in a warm tent next to the Craft Services tent.   Also, because she was under 18 years old, I had to stay near the set.

I had no desire to hang around with the other stage Mom's who  provided direction to their kids.  Seriously, these Mom's were a trip.  Did they really think their kid needed their instructions on how to stand in a crowd?  Ha, I guess they wanted their kid to stand out in a sea of extras wearing dark winter coats.  I just wanted to find a warm place where I could work on my computer. 

 I was going to sit in my car and work during the shoot, but they needed more adults and they asked me to be an extra too.   I figured what the heck, it would be fun to see what this whole extra stuff is about.  

While Heather sat her in  toasty tent, I sat in the 50 degree, damp, and drizzly weather on a cold metal bleacher.  Seriously - it was awful.....enough about me, this is Heather's story to tell.

Every few hours, they would take the extras onto the grassy area and shoot scenes of a large crowd.  Wow, this is some tough acting.  Thank goodness Heather had a voice teacher and acting coach - ha.

In between takes, Heather would retreat to her tent and I joined my fellow, over 18 non-SAG, extras on the cold bleachers.

Later in the day, they sent Heather out for another shoot and while she was quickly exiting her tent, she slammed into Matthew McConaughey - The Star - the dreamy upcoming new hot actor. 

What did she do?   Well, she gasped and froze in her steps.  Matthew McConaughey, being the true southern gentleman, laughed and then smiled and said in his slow southern drawl - "Why excuse me Little Darlin'?"  Heather gave a cute dimply smile and quickly exited.  Rule number one - don't bother the "real actors."   Matthew McConaughey just looked back and laughed as she ran out. 

Heather then went back on set for another high energy acting job of standing in a crowd - ha.  She was AMAZING.  Seriously, she followed directions, she wasn't annoying and asking questions, she sat quietly for hours between takes.

The movie was released and we went to see it with hopes of seeing our heads in the crowd.  Sadly, we made the cutting floor.   That didn't matter at all to Heather.  She had an incredible time, met some nice people, bumped into and spoke to Matthew McConaughey, and had her first professional acting job to add to her brand new acting resume.

Why do I always refer to him as Matthew McConaughey in this blog.  Can't he be just be Matthew.  Nope - in Heather's world he will always be Matthew McConaughey.   Do you ever call Betty Crocker, Betty?  I think not.  Martha Stewart will always be Martha Stewart. 

xo
Lisa

coming soon - Part II - Heather and Red Cross!

A new normal.......

Heather's liver enzymes have been the same for the last 3 months.  Trust me, this is a really good thing.  Her liver enzymes aren't normal, but who really knows what normal means.

Heather had a normal childhood.  But as I type this I don't think it was normal for her to have two surgeries before she was 2.  I don't think it was normal that she had her Screen Actor's Guild card at the age of 15 (yep, once a stage Mother always a stage Mother).   On a side note, Heather can attest that I wasn't a normal stage Mother.  I was simply the chauffeur to/from auditions, jobs, lessons.  Driving 100 miles a days were sometimes the norm for us, but I digress.   

So, bottom line, we are very pleased with Heather's health stabilization.  She will not see the Liver specialist for THREE WHOLE months.  Normally she was going every month.  Needless to say, we are ecstatic that the appointments are further apart.   She will continue to have her blood work done every month.

So does this mean that Heather's medical situation is now "normal"?  Well, I personally don't think that it is normal for Heather to still have severe neuropathy pain.  It isn't normal to sometimes have brain fog.   It isn't normal to be so fatigued after sleeping 12 hours.  Have I mentioned lately that ticks suck?   It really isn't normal to be seen every three months by a liver team.  It isn't normal to have MRIs done every six months.

What is normal about Heather's current health is that her blood tests are sooooooo much better than a few years ago and a lot better than 6 months ago.  We will take this new normal.

I do know that my "norm" always includes being by Heather's side and helping her navigate these curve balls that life has been throwing at her lately.  

I love you Heather.  This latest news is wonderful.  You have worked hard to stay focused, stay positive and stay strong.  Sure there have been some ups and downs, but that is life.  It's a good thing that your determination and positive attitude has, and will always be,  your "normal" approach to life.  Onward and upward Heather.  These baby steps are now normal steps and I like that.

xo

Lisa

What a difference a day makes

I love this picture. Pearl and Jesse are the perfect compliment to my sweet Heather.  

Summer seems to be flying by.  Heather recently took a fabulous trip with Kevin to Vancouver, Oregon, and Washington.  They saw lots of sites, ate well, and attended a wedding.  Heather was wise and she listened to her body and rested when necessary.  Yes, folks.  This is one of the sad realities about Lyme.  It robs you of your energy.  Sure you can rally for a few days, but you surely do pay a price for it.  Extreme fatigue is a common ailment in the Lyme community.

The night of the solar eclipse, Heather had one of her worst nerve pain episodes (she rated it 10 on the pain scale).  She hasn't had this extreme pain in a few months.   It started around 7pm and lasted through the night.  Heather describes this pain like someone is sticking a hot metal rod in her feet and the stabbing pain shoots up to her knees.  If you saw Heather when she was experiencing this pain you would be able to see how awful it is.  Sadly there isn't any medicine that takes away the pain. Sure she has some special ointments, and her standard medicine, but nothing helps with this extreme pain. 

One damn tick.  One dumb bite.  One can only hope we find a cure.

My poor Heather retreated to her room and quietly cried, waiting for some relief. Well about 4am the pain subsided a bit.  Enough for her to get some real sleep.  

I wondered if this awful episode had anything to due with the Solar Eclipse.  I know that may sound like a stretch - but who really knows?  I have heard from several people with arthritis that they were experiencing more pain than usual that day/night.  

Actually I would love to find and fix all the triggers for Heather's nerve pain.  It breaks my heart to see her struggle.  It doesn't matter how old a loved one is, it sucks to not be able to ease their pain and even better, cure their ailments and illnesses.  Yes, I am a dreamer.  

Heather is still in some pain in the picture above.  I know,  Heather looks so happy in this picture.  Well, Heather is happy.  Her liver enzymes have improved, she has a wonderful boyfriend, and she knows she has the support and love from so many people.  

However, I know that behind those dimples and that smile, is Heather the actress.  Her pain level was a 10 last night and it is a 7 today.  My tough Heather.  She rallied for the picture and gave me a dimply and cute smile.

I love you Heather.  I will always love and support you.  

On a totally non-related note.  I will end with one of my favorite quotes from Winnie the Pooh:

Piglet:  How do you spell Love?
Pooh:  You don't spell love,  you feel it.

Pooh was a wise soul.  It's easy to love my Heather and it warms my heart to know that she feels it.  

Love.  Not hate.  The world could use some more love.

xo
Lisa

Lisa's rambling thoughts

The good news is that Heather's liver enzymes really improved in June 2017.  It was such a relief - however I still worry. 

As we have heard from so many doctors, Heather's health issues are a medical mystery - she is an anomaly.  The liver doctors were stumped by the severe damage to her liver, and now they are equally stumped 

and ecstatic about this improvement. 

I can't wait for the next round of blood tests that will hopefully confirm this continued improvement.  The thought of a liver transplant for  my sweet Heather was terrifying.  It was just too much for us to comprehend.  However, I learned a lot about the advances made in Liver Transplants.  They now do "living donor" transplants.  Basically, if a match is found, the living donor donates half of their healthy liver, and the damaged liver is replaced with the other half.  Within a few  months both livers regenerate to a normal size liver.  Crazy right?  I will share more later.  

When Heather got sick in NYC, she tested positive for a genetic disease called Poryphria.  They did additional testing and of course she tested positive again.  The odd thing is that she doesn't present with the main symptoms and nobody in the family had this disease.  We kinda put that disease on the back burner.  So once again, Dr Google Lisa recently did some research and saw there may be a link to the liver damage.   Yep - once again - a medical mystery.

I try not to do a ton of medical research - but I do try to educate myself with all things Heather.  I know you can always find that worse case gloom and doom diagnosis - but I am looking for success stories, treatments, homeopathic approaches.etc.   In a perfect world, I will find the cure to all of Heather's ailments on the internet.

I am already slightly educated about Lyme and how screwed up it is.  

• Because of the mild winter we had, they are expecting a higher percentage of Lyme patients.  Wasn't 300,000 new cases a year enough?

• Lyme disease tests are highly inaccurate,

• Lyme Literate Medical Doctors (LLMD) that treat chronic lyme are very expensive and don't accept health insurance, 

• When Lyme isn't detected in the early stages, it becomes Chronic Lyme, a condition which the CDC and IDSA both deny even exists.  The 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.

• There isn't a cure.

My continued concerns for Heather have to do with her fatigue, excruciating nerve pain, and brain fog.   All of these symptoms are related to Lyme.  Yes, those nasty ticks can cause so much damage.  A few months ago  Heather was seeing a holistic doctor that specializes in Lyme.  Sadly, Heather's numerous health issues make it difficult to safely treat the Lyme without further damaging  her liver. 

Heather has been sick now for 2 year and and 8 months - not that anyone else is counting.  The doctor appointments have lessened, however she still doesn't have the stamina to resume her normal work and social life.   As I have said before, she has good days and bad days.

One of the thing that I am most proud of, is Heather's positive outlook on life.  Trust me she has some very difficult days, but she is trying her best to remain focused and hopeful. 

So many of her friends are married, have babies, work, and travel.  Heather is happy for them and she is hopeful for herself.  It just breaks my heart to think about the hurdles Heather is still facing.  Thank goodness for her amazing boyfriend and his supportive family.  They bring such joy, laughter and happiness to her. 

Now let's talk about me.   It is difficult to find that one word that sums up my life without my Mom.  Yes, I know, she is with me in spirit and watching over me, but sometimes that isn't enough for me.  Since her passing, every day I think about calling Mom.   Mom was the person I talked to every single day, she had such a positive attitude, and was ALWAYS there for Heather. 

I can't even explain how depressed I was after losing Mom.  Then,  three days later, we found out  that Heather was possibly being put on the liver transplant list.   My world seemed to be crumbling down around me.  I have such wonderful support from family and friends, but sometimes a girl just needs to talk to her Mom. 

Here's a fact.  I am learning to not be so overly protective with Dad.  I found myself hovering and worrying.  I can't even fathom how sad it is for him to be alone in the house surrounded by all things Mom - her lingering perfume smell, the royal memorabilia, the box of cards that she purchased months ahead of a person's birthday, or her seasonal decorations.

Dad is doing well and I am so blessed to live close by and spend time with him.  Several nights a week he joins us for dinner.   He shares stories, we talk about Mom, and we just enjoy our time together. I always try to learn from his example.  He is the most generous, thoughtful, loving, caring,  and intelligent person that I know.  

Years ago I was fortunate to have worked with Dad.  Not only did we publish a book about golf courses in the DC metropolitan area, but I did contract work for him at several of the unions that he supported.  Dad has an amazing work ethic, he treated everyone with respect, he kept up with technology, and he is an amazing writer.  I guess you can tell how much respect and love I have for my Dad.

So, each day I try to put one foot in front of the other and continue to move forward. 

I try to focus on the positive things in my life.

I try to help others. 

I try to take care of myself. 

xo

Lisa

Finally..Some AMAZING News

This is a happy and positive blog.  Seriously.....

Drum roll please.....................................

Heather saw the liver Doctor yesterday and her liver enzymes are better, her platelets are on the rise and close to normal, and her liver transplant score is stabilized.  What does all this mean? Well, the doctor said if these numbers continue to improve she may not need a liver transplant!!!!!!!

 If only you could have seen the joy and happiness on Heather's face.  It was PRICELESS.  For the last 7 months there has been so much talk about liver transplant.  Then to finally hear that maybe, just maybe, she may be able to avoid a liver transplant.

Did you hear me?  She is not going to be put on the liver transplant list!!!!!!!

The main question we all have is why this improvement.  As the doctor said, Heather's case is an anomaly.  She has always been a medical mystery,  but we will take this mysterious improvement.  We know that some of this improvement had to do with diet changes and medicine adjustments.   Whatever the reason, she can now focus on getting healthier and stronger and may pursue additional Lyme treatment. 

What does this mean going forward?  Heather will continue to be monitored by the liver doctor to ensure that her liver enzymes are stabilized.  If these amazing blood results remain stable or improve, her monthly visits may be changed to every 3  months, then 6 months, then once a year.  

Thank you all for the love, support, and prayers for my sweet sweet Heather. 

Today, we are hopeful and happy.  We can breathe a sigh of relief. 

I love you Heather.  Finally, you have received some good/great/amazing/incredible  news.

xo
Lisa 

Happy Birthday to my sweet Heather

Heather,

Every year on June 7th, I reflect on the joy and happiness that you have given me.  You are my favorite.  You are my one and only.  You are my best friend.   You are the most precious gift I have ever received.

Despite the health challenges you have encountered these last few years, you continue to inspire me with your courage and tenacity.  You never cease to amaze me with your strength and positive attitude.

Heather - I wish you nothing but happiness, love, laughter, good health, puppy kisses, fun in the sun, days on the beach, boat rides on the lake,  family dinners, trips with Kevin, trips with me, and new exciting adventures.


Happy birthday Heather.  I love you more than words can express.  You are my everything.

xo
Mommy

Please enjoy some of my favorite pictures......

Heather on the go - 7 months.

Heather and Kevin - Charleston SC

Sun kissed at the beach

Heather and Pearl

One of Heather and Kevin's first pictures together

Mom and Heather

Dad and Heather

silly times in back of NYC cab

Joe, Timmy and Heather before a Mets game

My beautiful Heather

Heather and Lyndsay

Heather and Dad

Sweet sweet Heather

Heather Sophomore year

Me and Heather

Heather 2003

Adventures in Cabo - 2007

Me and my sweet baby girl

Heather 2015

Look - I received an A+

First time seeing my baby girl

Beach House Memories

4-wheel drive 

Joe, Dad, Jesse and I came down for Memorial Day weekend.  It was a much needed break and very relaxing.

Today I was looking at the only photo album in the cottage with pictures from 1986 - 1992.   There are also some great photos of the wild horses when they were roaming the Corolla beaches.  Fortunately they are safely contained in the 4-wheel drive area, but it was pretty wonderful to see them grazing in the yard and roaming the beach with us.

I hope you enjoy this photo stroll down memory lane.  So many wonderful memories of beach time with my Heather.
xo
Lisa






Heather's first trip to appropriately named Duck NC.  There were ducks at the Wee Winks Store.  Doesn't everyone travel in a robe?

















Heather (age 4) standing on the stairs of "Ducky Irene".



Heather - 5 years old.  Who says you need an umbrella to get some shade.  Mom's beach bag works fine.


Heather obliged my love of photography and she is super happy I take pictures of birds now.



Sun streaked natural highlights



Prue and Heather - 6th grade





Horses in the front yard.  This small herd lived here for a few years.




Check out my fine parenting skills - Heather is playing next to the horse and I am watching from a safe distance.  The horses were on the beach all the time with us.

Frisky Stallions.


This is pendant that I designed and gave to Heather.  It has the nautical coordinates for the beach house.  The diamonds were from earrings and necklaces that I received from my Mom and Grandmother.  The back is engraved with Irene.  Heather and I both have my grandmother's name as our middle name.  I also named the beach house after her - Ducky Irene.

Saving the best for last, there is a journal at the beach house for family and friends to write in.  Well, I was looking for my Mom's last journal entry and found this gem.

Twins? No........but proudly Mother and Daughter

Some say we look like twins.  I REALLY appreciate the compliments, but nope.  In an odd way I wish I could be Heather's twin, then I could be a living liver donor for Heather.  Oh what I wouldn't do to be able to cure Heather's Lyme and Liver disease.

What I see in this picture is a happy Lisa and a happy Heather at their happy place - the beach.

I am proud to be Heather's Mom.  I will admit that I can see the "twin" resemblance in the beach hair.  We both LOVE the beach. What's not to like - sand, sun, surf, seashells.....

This year, Heather will be spending Mother's Day with my Dad on a cruise to Bermuda.  The tickets were purchased last summer, before my Mom passed away.  Mom and Dad were really looking forward to this cruise with their dear friends, Ann and Ray.

Well, Dad decided he still wanted to go on the cruise and he asked Heather to join him.  YIPPEE!!!!! I may be a tad jealous, but I am so happy that Heather will be able to escape to an island, swim with the dolphins, and enjoy a spa day with her Grandfather.

Another wonderful thing is that Heather was at jeopardy of NOT being able to go since here liver enzymes tanked.  She had blood work done a few days ago and her Liver doctor said she could go - whew.  My sweet Heather really needs this break.   Heck, both Dad and Heather deserve this wonderful trip.

As for me - I will spend my Mother's Day on the lake, reflecting and missing my Mom, and smiling when I think about Heather and Dad on the cruise.  Tears will be shed, but they will be tears of love.

I love you Heather!  I am so proud and honored to be your Mom, your friend, your confidant, and your advocate.  Enjoy the cruise, take lots of pictures, and cherish this wonderful adventure with Bill (Huh?????  Dad, Grandfather, Bill ..... yes, they are all the same person.  Heather and all the grands call their Grandfather, Bill.)

xo
Lisa

P.S.  When Heather returns we will be participating in the Liver Life Walk in Washington DC.  Life has been a bit hectic and we haven't registered or started a team but, we will be there.

EVENT DATE: May 20, 2017
WALK BEGINS: 10:00am (Check-in 8:30am-9:45am)
WALK ENDS: 12:00pm
LOCATION: Nationals Park 1500 S Capitol St SE, Washington, DC 20003

May is Lyme Disease Awareness Month

May is Lyme disease awareness month. Prevention is the first line of defense, but awareness of symptoms is also important. Timely treatment can both cure these symptoms and prevent progression to the later, more serious form of the Lyme disease - Chronic Neurological Lyme Disease,

Trust me - you don't want to have Chronic Lyme Disease.

What can I do to prevent Lyme disease?:

• Dress defensively. 
• Use insect repellents. 
• Do your best to tick-proof your yard. 
• Check yourself, your children and your pets for ticks. 
• Remove a tick as soon as possible with tweezers. 
• Go to your doctor if you think you were bitten by a deer tick. 
• Check out this link for a tick identification chart: http://www.tickencounter.org/tick_identification
• If you are unsure about the type of tick, you can email a picture or send the tick for testing to: http://www.tickencounter.org/tick_identification/is_it_a_tick

Lyme Facts:

• Lyme disease is transmitted by the bite of a tick, and the disease is prevalent across the United States and throughout the world. 
• Lyme disease is best treated in the early stages. Early treatment consists of oral antibiotics. Persistent or chronic Lyme disease is treated with intravenous antibiotics.
• 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. 
• The disease is caused by a spiral-shaped bacteria (spirochete) called Borrelia Burgdorferi. The Lyme spirochete can cause infection of multiple organs and produce a wide range of symptoms. 
• Fewer than 50% of patients with Lyme disease recall any rash. Don’t assume you can’t have Lyme disease is you don’t have a rash. 
• Testing for Babesia, Anaplasma, Ehrlichia and Bartonella (other tick-transmitted organisms) should be performed. The presence of co-infection with these organisms points to probable infection with the Lyme spirochete as well. If these coinfections are left untreated, their continued presence increases morbidity and prevents successful treatment of Lyme disease. 
• There are no tests to provide that the organism is eradicated or that the patient is cured. 

xo

Lisa

"L" is for Love, Lyme and ........ Liver (heavy heavy sigh)

When I started blogging about Heather's Lyme disease journey, I had no idea how many different paths she would encounter.

In March 2016 if you had asked me to predict Heather's medical situation for 2017, I would have said she would be in Lyme treatment.  Never in a million years did I think the focus would switch from Lyme disease to liver disease.

Heather and I wanted to be honest about her journey, but the more testing that is conducted, the more they discover, which leads to more tests and of course more problems.  The last few months have been a challenge.  We have shed a lot of tears.

I know, I am talking in circles.  As I have said, we know that Heather's immune system has been compromised since childhood.  We know that she has a fatty and damaged liver,  and elevated liver enzymes that don't seem to be getting any better despite life style changes and medicine adjustments.

Heather is now a patient with the Medstar Georgetown Hospital Liver Transplant team.  Yes, Liver Transplant Team.  Trust me, this diagnosis was SHOCKING to hear.  We went through all of the emotions - disbelief, anger, frustration, sadness, etc.  We have known about this diagnosis for about six months.

Two months ago, her liver numbers had improved, but sadly this week we found out her numbers are worse.  This means more tests (i.e., MRI, doppler ultrasound) and additional blood work.  If her numbers aren't any better, then she will meet with the liver transplant team and probably be put on a transplant list.  

Yes........................my sweet Heather will some day, in the unknown near future, need a liver transplant.

Let's go back to the Lyme and liver.  Heather's Lyme doctor always knew that Heather had several secondary issues that needed to be addressed before he could treat her chronic Lyme. Well, when he found out about the liver disease, he said Heather would need a liver specialist and hematologist to monitor her liver.  Well, that won't be happening.  It is too risky to put her Liver through an antibiotic treatment.  We are taking with Doctors about alternative methods for treating Lyme, however Heather is now a liver patient.  

I still blame that damn tick for F'ing with Heather's health.  One small tick.  One stupid bite.  My best analogy is that the lyme disease with the compromised liver and the unknown immune issues, coupled with months of antibiotics was the perfect storm for serious damage to her health.   There is no correlation between Lyme disease and the damaged liver, but then again there isn't a "cure" for lyme so there is still a ton to learn.  I haven't been on a Lyme rant for a while, but I really do HATE and DESPISE Lyme disease and the CDC.  Rant over (for now).

We will never know when Heather's liver starting going down hill.  We do know that the images of her liver when she was first diagnosed with Lyme showed a normal size liver, gallbladder, and spleen.  Her liver enzymes were elevated but that was expected due to all the antibiotics she had been taking for a few weeks.  The surgeon that removed her gallbladder and took the liver biopsy told me that her liver looked like it has been deteriorating for a very long time - maybe back to childhood.

The biopsy results mentioned that she has fatty liver of "unknown etiology."  When Heather talks with the Liver Specialists, they always mention that Heather is one of their young mystery patients.  They are stumped about the deteriorating condition of her liver.

Heather's liver team is amazing.  They are compassionate, honest, encouraging, and have the best "bed side manner."   We are fortunate to have this team of doctors in our own backyard. Thank you Laura - we appreciate the referral and your guidance.

Another concern and reason for a possible transplant is that Heather is at a slightly higher risk of getting liver cancer.  Well we have AMAZING news there.  She had an MRI of the liver 6 months ago and there were no spots on the liver.  Hopefully the MRI she is getting soon will have the same results.

It is hard for me to understand why raging alcoholics, that drink 24/7, don't have liver disease.

How can plain ol' drunks have a normal liver?

How can a 34-year old woman, that worked 60+ hours a week and partied with her friends like any 30-something person would, have this diagnosis?

We are not alone in this "why me" question. Anyone dealing with a sad medical condition wonders "why."

This was a really tough blog to write.  I initially wrote this blog six months ago, but so much else was going on that we didn't want to post it.  Heather's first visit with the Liver team was 4 days after my Mom passed away.  Let's just say we were overwhelmed with life then.

When we started this Lyme blog, it was to educate and inform about ticks and Lyme.  Who knew that instead of Lyme we would switch a few letters and now deal with the Liver.  It is hard to share such personal medical information.  Heather will determine if she wants to continue to share her journey.

Let's back up a few months - Recently Heather has been having problems with her neuropathy, vision, and brain fog.  Of course, once again Heather is a mystery patient and her new neurologist is stumped.  Sigh.  Unknown etiology - um perhaps Lyme is a possibility?  We know that the liver doesn't cause her nerve pain.  That my friends is a Lyme thing.  argh.   But I digress.

Heather also had started a new job in February.  We were keeping this quiet in hopes it would work out.  Sadly, the Lyme neurological issues and missing a few days  of work for Doctor appointments and tests made it impossible for Heather to meet the companies' realistic expectations.   We are thankful that they were willing to give Heather a try.   Sadly this job opportunity required a 40-hour work week, plus a commute.  I know that seems like normal working hours, but Heather's body just wasn't able to keep up.

A few healthy years ago, Heather worked a 60+ hour work week and still had energy to socialize.  Oh Lyme Disease and the F'ing CDC - it's bad enough that one small tick can cause such damage, but I will never understand how the CDC buries their little heads in the sand and don't look at the scientific evidence about the long-term effects of Lyme disease and that chronic neurological Lyme does exist.  My sweet Heather is quick to say that she wouldn't wish Lyme disease on her worst enemy.  That in itself speaks volumes.

Heather - I can only imagine how terrifying this new diagnosis is, but I will NEVER give up helping you, seeking the best medical care available, holding you on the bad days, laughing with you, and loving you.  We have this one Heather.  You are such a strong and beautiful person and I know that you are ready for this fight.

Please keep Heather in your prayers. 

xo
Lisa

Nerve pain and brain fog......my poor sweet Heather, she doesn't deserve this

I love this picture of Heather.  We were on the boat in late February - it was a beautiful sunny and cold day.  This warm coat is able to protect her from the cold however, nothing  can protect Heather from her neurological pain.  

Because of her neuropathy, cold weather is tough for Heather.  Sadly, in the last few months, her neuropathy has gotten worse.  It mimics how sick she was when first diagnosed with Lyme and last year when she seemed to relapse.  No longer is the numbness contained to her toes.  Now she is experiencing tingling and numbness from her toes to above her knees. What is worse though is that she has shooting and stabbing pain that goes from her toes to her head.  Why?????  Lyme disease.

I wish I could wrap my arms around Heather and protect her from additional pain.  There is nothing worse than hearing her cry out in pain, begging for relief, her body spasming from nerve pain.  I have seen her curled up in pain and NOTHING can help it.  I don't know how she does it.   

Any pain that I have experienced has been easily treated with pain medication.  This isn't the case for Heather.  Narcotics don't eliminate her pain.  Heather also HATES taking pain meds.  Her pain management consists of nerve meds, epsom salt baths, and a puff puff here, and a puff puff there.  Here a puff, there a puff, everywhere a puff puff.  I'm just trying to add some humor to Heather's painful situation.  Every single doctor is aware of her pain management.  Trust me, these doctors would love to have that magic pill/cure to rid her of this pain.

Sadly, nothing really gets rid of the pain.  Prescribed meds that are used for neuropathy can have a very sedative affect.  Not the best thing if you are trying to live a normal life. 

Hmmmm, I just used the word normal. I have no idea what a normal life is, but I do know that Heather is not living a normal life.  Every day she experiences excruciating pain.  It comes out of nowhere.  There isn't a trigger or a reason.  

Recently, in addition to the nerve pain and brain fog, Heather had sudden onset double vision and extreme pressure behind her right eye.   She saw a neurologist and neuro ophthalmologist, had several scans and tests and once again, they are stumped.  That isn't a bad thing - they ruled out some scary stuff.  However, once again Heather is a mystery patient.  Seriously, where is Dr. House when you need him?

Living with a chronic illness sucks.  It breaks my heart to hear Heather say "why is this happening to me?  What did I do to deserve this"?   Heather is just another innocent victim to Lyme disease.  She never saw the tick, she never saw a rash.   

There are so many other health issues that we will be sharing in a future blog.   For now I just wanted to say that Lyme disease sucks.  But what sucks more is that the mainstream medical community doesn't recognize the enormous number of people that are dealing with chronic Lyme disease.  There really isn't a cure for Lyme disease.  If it is detected and treated in the early stages (e.g., when you see the tick and the rash), then you may be able to avoid what Heather is experiencing.  

Please pray for my Heather and those affected with chronic neurological Lyme disease.  

xo
Lisa