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