ANOTHER WEEK FIGHTING THIS DISEASE, BUT FOUND BLESSINGS!

Fighting this disease for as long as we have, has definitely helped us find and acknowledge those simple blessings that we might have missed. Many of those blessings are found in observing the wonder and appreciation children have for things I think most adults just pass by and miss everyday.  For a Lyme Family, a simple outing  you can all go to, and be a part of, is one! This week has surely had it's heartaches, but one of the biggest blessings was being able to go, as a family (which we never take for granted anymore), to our youngest daughters Honey Bee Choir Performance. Usually, one of my family members  is not feeling well enough to go to an outing so there is likely to be someone missing.  But this week we all got to be together and watch what I call a true blessing.  First and second graders singing with all of their hearts to School House Rock Songs!  Another blessing was being able to celebrate our eldest daughters 19th birthday, which was today. She woke up feeling pretty good, and had a semi-normal day. She, her friend and I got to go to lunch and had a pretty normal afternoon. A peace started to settled in my soul that was comforting, and unknown to what I used to know.  Just as we sat down as a family and starting sharing the stories of the day, about  half way through Bronte's  symptoms started to flare up, and the reality that my other daughter had to start her IV's set in. For a split moment today I got to experience my life as I used to know it so many years ago. It is so foreign to me now, but I actually had moments of just laughing and relaxing knowing for the short time someone in my family wasn't feeling too much pain and I was grateful! As Bronte's symptoms flared up more, and my other daughter Isabelle was getting on her IV's, Bronte came over and gave me a hug. In her Bronte, sincere way, she hugged me and said, "Mom thank you for today and all you did." I hugged her back and told her how proud I was of her, and how much I loved her.  She then choked up a little and said, "I'm 19 years old. I've been sick and fighting for 19 years mom." And, what a mother could only say to that without falling a part is, "I know Bronte. I know." My children have endured what no child or human being should ever have to endure, especially with all of the resources we have in the day and age we live in. It's inexcusable!!

I want every sufferer of this incomprehensible disease to know: YOU MATTER, YOU ARE NOT ALONE, YOU ARE SIGNIFICANT! I can't tell you how many times for years my family felt so alone, but when we learned we were not it made such a difference.  YOUR pain is not silent, we have each other. 

For those of you who do not have this disease, but are trying to educate and understand it, THANK YOU!

LYME DISEASE AND CO-INFECTIONS AWARENESS/FUNDRAISER

I am happy to say that we finally have a date confirmed for a Lyme Disease and Co-Infections Awareness/Fundraiser event we've been wanting to host for quit some time.  It is going to be Thursday evening, May 21st at the Los Gatos Theatre.  The director from Under Our Skin will do a Q and A after the movie.  I will send out the details in the next few days.  Proceeds will go to Open Eye Pictures, Bay Area Lyme Foundation, and LymeLight Foundation.  

May is a very, very important and crucial month to bring more awareness to this devastating disease!  The past couple of weeks have been really rough for all of my family.  Scott is continuing to do his PK treatment, and Bronte and Isabelle have had a lot of symptoms flare up.  My youngest daughter Abby starting showing some symptoms so we just had her tested along with getting testing for me.  I have had symptoms for 2 years, but they go off and on, and I feel lucky this far that I haven't had to start treatment because I am taking care of everybody and still need to.  However, with that being said my symptoms have increased a little so I just got retested and will find out more in a couple of weeks.  

Scott and I just did an interview with the Los Gatos television station explaining our situation from  all of these years, and trying to educate the public that this is a real disease with so many people suffering. If we can help one person we will be happy!

Thank you for your love and support through our journey!

Love,

Camille

A New Treatment and More Testing

We really appreciate people that have commented on our blog and have sent well wishes!  It is a really lonely world to be in with Lyme Disease and all your prayers and thoughts mean so much to our family, so THANK  YOU!  Just adding a simple comment to our blog brightens our day more than people really understand.  We deal with crisis on a daily basis so just reading a sentence like "We're thinking of you!" makes a difference!  

This past week was difficult  for all of my family.  As a wife and mother (the only word I can come up with is, "unbearable") it is unbearable to watch my husband and daughters suffer every single day!  And anyone who has this disease understands, it is daily suffering.  My faith,  and love we receive from family and friends continues to carry us through this journey that we've been on for so long., and we are grateful for that! 

 Scott has started his new treatment and it will be interesting to see how he is affected by it and if there will be any benefits.  There are only a little over 300 people in the world trying it right now. It is both an anxious and intriguing place to be in,  for we wait week to week to see if  he will start  feeling better or worse.  I have been having some symptoms of Lyme Disease and Co-Infections for a couple of years now that go off and on,  however  last week they increased so more than likely I will be starting treatment as well.  My testing a couple of years ago was inconclusive, but a lot of times (because the testing is still not 100% accurate) you get diagnosed clinically.  Isabelle continues to do her IV's and is so brave going to school part time.  She and Bronte are going through a lot of brain issues right now , as well as other issues the Disease haunts you with.  My youngest daughter has been the healthiest thus far, but has had some symptoms recently and we had her tested and are waiting for the results.  

I know just reading our blog is daunting,  because at times, especially when I read what I've journaled, I have to remove myself emotionally just to get through the writing.  I've decided to do this blog because I really believe I am fighting for my families lives, , fighting for the other sufferers, and for all of those who are infected who haven't even begun this journey.  I do feel blessed that through this 18 (+) years journey that I am able to write and share our story in hopes that no one else has to endure what we are still fighting for.  Please share this website with anyone you think you could help!