Meet my daughter, Chelsea. She is beautiful, inside and out. As a young girl and throughout her 23 years, she's had a heart for God and genuinely loves all people. Even while experiencing the debilitating symptoms of Lyme Disease, she continues to give of her self and her time to help those around her. She has, to the best of her ability, remained positive and hopeful, relying on her faith. However, on occasion, she has experienced her "down" times. It was during one of the times when she wrote the following on her blog (fromchrysalistobutterfly.blogspot.com)...
"In a few months, it will be 2 years since I've been on treatment, 1 1/2 years of that being aggressive treatment, and over 10 years of symptoms.
This is how I feel about that...
I'm sick and tired of just feeling crappy all the time.
I'm sick and tired of the majority of the medical community being ignorant of this disease that wreaks so much havoc on so many lives.
I'm sick and tired of being a 23 year old and not being able to act like one with my own place and career.
I'm sick and tired of worrying about if a certain food is going to make me feel worse.
I'm sick and tired of worrying about doing something that might make me feel like I've been run over the next day.
I'm sick and tired of searching for words (serious brain fog and word block often come with Lyme...lovely, huh?! Sorry for that sarcasm haha).
I'm sick and tired of always thinking about what medicine I need to take next.
I'm sick and tired of people saying it's all in my head.
I'm sick and tired of being attached to my heating pad (haha true story).
I'm sick and tired of being the friend that has to cancel 80% of the time because of how I feel.
I'm sick and tired of feeling like I'm on a rollercoaster ride (rollercoasters are fun for the most part, but moving from highs to lows can get old haha).
I'm sick and tired of feeling like the person that makes things difficult for everyone.
I'm sick and tired of Lyme Disease stealing my tears.
I'm sick and tired of people not understanding."
As Chelsea's mom, my heart broke after reading her above post. Knowing of her dreams and aspirations for her life, as in going to seminary, having a family, mission trips to Africa, and one day having her own non-profit organization, I've come to realize none of this can happen any time soon. She still has a long road ahead of her until she can bring these plans into fruition.
Since the age of 14, Chelsea has suffered from multiple symptoms such as muscle pain, neurological symptoms, brain fog, migraines, gastrointestinal issues, extreme fatigue, chest pain, anxiety and many other symptoms. As a young teenager, she saw a countless number of doctors and specialists with no answers to our questions. In a last ditch effort, at the age of 21, she agreed to see one more doctor. Thankfully, this doctor was from the Northeast and familiar with Lyme Disease. Sure enough, she tested her for Lyme and we finally received a diagnosis of active and positive Lyme Disease.
Last year, her out-of-pocket expenses exceeded $20,000 (not covered by insurance). With the help of a tee-shirt fundraiser during the first year of treatment, we were able to pay for her medical expenses. Her health was improving, and she was able to work part time. However, due to the nature of this insidious disease, her cognitive and neurological functioning is not improving as it should be at this time. Therefore, she is left with no choice but to be treated with IV antibiotics through a PICC line for an expected 3-6 months. The cost of these IV antibiotics is in addition to all of her other medication. Unfortunately, as her parents, we are left with no choice, but to ask for help.
We greatly appreciate your consideration and support. God bless you.
For more info on Lyme Disease, check out www.ilads.org.
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