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

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. ...

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 Heath...

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 contin...

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 H...

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. ...

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.  W...

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 Heath...

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...

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 e...

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 ...

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...

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 curle...