*Originally published 5/1/14*
May is Lyme Awareness month. It also happens to be the month that, 2 years ago, Cassidy starting feeling bad. She can tell you the exact day that she got her first symptom – at her cousin’s birthday party, a horrible headache came on that wouldn’t go away. It was so bad that it hurt to lay her head on her pillow. May is also the month we started our 6 month journey to figure out what was wrong with Cassidy. 9 doctors, and 2 E.R. trips later, we finally made our way to a “Lyme literate” doctor who diagnosed her correctly with Lyme and 2 co-infections – Babesia and Bartonella.
Our journey has not been easy, but we are amongst the lucky ones. People go years and years without getting the correct diagnosis. And, getting the proper diagnosis does not mean you will be “better” anytime soon. The road is treacherous – there are good days when I see the smiling, happy teen that is my baby girl, but the bad days – well, they are heart-breaking.
To see your child lying in bed, barely able to move as the pain and fatigue overwhelm her, is agony. Many nights I have gotten in bed with her and cried beside her, feeling helpless to “fix” what is wrong. Then there is the horrible, nagging feeling that never goes away as you wonder if you are doing what is best for your child. I’ve had doctors tell me that she does not have Lyme – that “according to the CDC” she tested “negative.” But, what I have learned through all of this is that the “powers that be” are not always looking out for us, and their “tests” are not always accurate. In fact, the definition of a test is “a particular process or method for trying or assessing.” So with “trying” or “trial”, there is always “error.” And, unfortunately, we suffer for this. Even after Cassidy was diagnosed by 2 different Lyme literate doctors, I still had a doctor in our primary care practice literally yell at me and tell me I had wasted a year of her life. But there is no denying, that since her Lyme treatment started, we have seen improvement.
I know Cassidy can never get back all of the things she has missed these past 2 years, but there have been some good things throughout this journey. Cassidy started a Facebook group for teens with Lyme and began “meeting” others like herself through this group and other social media venues. She made some amazing connections and has found some true friends! One of the best days in a long time was when she actually got to meet, in person, one of the girls she had been talking to, through social media, for over a year. These contacts have helped her through some of her worst days, because they know exactly what she’s going through and can help her even more than I can. In return, she is also there for them when they need a kind word, an understanding reply or even a “virtual” hug. I also started a Facebook group. It is for parents of teens with Lyme. I am also a member of several other Lyme-related Facebook and Yahoo groups. These have been a great place for me to ask questions and get information. I’ve even posted pictures of some of Cassidy’s weird symptoms and gotten almost immediate feedback. I know these people aren’t experts per se, but many of them are, in my opinion, a different kind of “expert” – life-experts who have gone, or are going through a similar situation. These “friends” have helped me keep my sanity on many occasions.
Awareness has become a main focus in our lives since Cassidy’s diagnosis. I am sure I have been “un-friended” by people on Facebook because I constantly post things about Lyme disease. It is, obviously, a huge part of my everyday life, and it is always in the back of my mind. In fact, at one point, my husband asked me if I could possibly have a conversation that didn’t include Lyme disease! Through these conversations, though, I have helped several people get the proper diagnosis for themselves. It is not an easy thing to hear, and the long term treatment that is usually necessary is costly and time-consuming, but getting the answer is the first step in getting your life back.
As we enter another year of our life with Lyme, I will try to focus on the positive. Cassidy has improved overall, although some days it seems as though this nightmare will never end. She is doing very well in school and she has happy, healthy relationships. She is a funny, intelligent, beautiful young lady and I am so proud of her for overcoming so many obstacles and hardships. She is a fighter, a warrior, and she will win this battle.
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