Halloween - Trick or Treat .......

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.

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 that 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 

After Heather's Lyme diagnosis in December 2014, I now realize that although I am scared of some things, I am now fearful of that damn small tick that can terrorize someone's life without them ever seeing it. Now that is scary. 

This bug can attach to an innocent person, infect them with their bacteria, and then slip away unnoticed. If the tick had any decent manners, it would have left it's calling card (i..e, the bulls eye rash), and you would know that the tick left you a something that should be dealt with IMMEDIATELY.

The tick doesn't give a damn that you have to take a test after his visit, he doesn't care about how unreliable the test results are, the tick really doesn't have any idea that there are differing views in the medical community about Lyme Disease, Chronic Lyme, Neurological Lyme..........and sadly so many more.

That tick is selfish, tricky and terrifying. 

For Halloween this year, I'll take the treat.  Patients deserve TREATment for their disease, they deserve to be TREATed with respect when trying to get others to understand this misunderstood disease.  It's not that TRICKy- just TREAT Lyme patients with respect.  We will continue our journey to spread awareness for better diagnostics, a cure, and consistent, affordable, and reliable TREATment plans.

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, love, and find a cure for Lyme.  XO

1994 - Mommy - I don't feel good.....

Heather - 1994 - Outer Banks North Carolina

When Heather was in  middle school (1994) she was really sick for about a month.  Her symptoms were fever, hives, aches, joint pain, sensitivity to light, and nausea.  When you read about Lyme Disease, there are so many cases where people were sick for years, without a Lyme diagnosis.  It made me think back to 1994 when the doctors were stumped by Heather's illness.  

Some extensive blood tests were performed and they were quite concerned with Juvenile Rheumatoid Arthritis and Lupos - based on the elevated count of her antinuclear antibody blood test.  They eventually ruled these out.  However, they determined that she had a compromised immune system.  

After about a month, Heather's health returned to normal.  However, since that time, she has had random bouts with hives and when she is really run down or sick, her body takes a bit longer to recover.  

After all my internet research on Lyme disease, I sometimes wonder if she wasn't infected in 1994 and the disease lay dormant.  However, I am pretty confident that Heather was infected in 2014, but her symptoms in 1994 make me wonder.  

Recently when I was trying to purge the clutter in my house, I found boxes of memorabilia that I kept from Heather's childhood.  I found a letter that Heather wrote to me in 1994 when she was 12 and not feeling well.  It was hard to read because it hit home to her struggles with Lyme.  The only thing missing was the stabbing nerve pain.  Here is her note:   


Dear Mommy:

When can I take my next hive pill.  I feel puffy.  Thank you for the loom kit.  I really like it.  My back is really bothering me.  When will the advil start working.  I am getting tired so I am going to lie down.  I love you.  Please come lay with me.  I ACHE, MY JOINTS ARE IN SO MUCH PAIN, I CAN'T SIT/LAY IN ANY POSITION.  Can I take a bath soon.

                                    Love,
                                    Heather !!!!!!!!!!!


P.S.S.S.S.S.S.S.S.S.S.S.S.S.S.S.S.S.S.S.S.S
                          IIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIII
DON'T  DON'T  DON'T  DON'T  DON'T  DON'T  DON'T  DON'T  DON'T  DON'T  
                   FEEL  FEEL  FEEL  FEEL  FEEL  FEEL  FEEL  FEEL  FEEL  FEEL  FEEL 
 GOOD GOOD GOOD GOOD GOOD  GOOD GOOD GOOD GOOD GOOD     

             
In the twenty years that have passed since this letter, I can say that Heather was healthy.  I am blessed and thankful for that.  However, after this Lyme diagnosis and then discovering this letter - it really makes me sit back and think.  

Some things never change.  When Heather is really sick, she still tells me over and over and over:  I don't feel good.   

Those words tug at my heart and make me want to stop whatever I am doing and try to comfort her and fix things.  No matter how old we are, we all need and want a Mommy that just listens and says "I know  you don't feel good - what can I do."

What can I do now?  I can spread awareness about Lyme disease with the hopes to educate and inform.  As we all know, early detection and treatment is critical. 

From the lymedisease.org site:
 
 
"Many Lyme symptoms, such as fatigue, cognitive impairment, joint pain, poor sleep, mood problems, muscle pain, and neurological presentations also occur in other diseases. Hence, the symptoms of Lyme disease significantly overlap those of chronic fatigue, fibromyalgia, rheumatoid arthritis, multiple sclerosis, Parkinson’s disease, ALS, depression and Alzheimer’s disease. Many Lyme patients report being misdiagnosed with a different condition before being properly diagnosed with Lyme disease"