In a campaign led by the Lyme Disease Association, May is Lyme Disease Awareness month. I’d heard of Lyme, but it wasn’t until a few weeks ago, after a longtime friend and colleague of mine—Ashley Bell—reached out to me, that I started to pay closer attention to what it was exactly. In her message, she revealed that she’d been silently struggling with the disease for four years. In fact, this month marks the four-year anniversary since she was bitten and infected.
I’ll go into the specifics of Lyme disease a little bit further down in this post, but first, I’d like to share a little bit about Ashley and her experiences.
We first met through our work in the fashion industry. She was a hair and makeup artist for Kim Dawson. In 2010 she had a very difficult pregnancy that left her bedridden for the last four months of it. Her immune system was weakened, and her body was fatigued. These were perfect conditions for Lyme disease to take hold.
On the weekend of May 19 through May 22, 2011, she went on a camping trip with her then-fiancé and friends. Her wedding was scheduled to happen two weeks later. They were tent camping only an hour east of Dallas, about thirty miles from I-30 on some private land. A few days after they returned, five red bumps showed up on her body—two on her upper body, one on her back, and one on each leg. They started out the size of a silver dollar but quickly expanded to the size of grapefruits. They were raised and warm to the touch, but they didn’t itch.
It took between two to three weeks for these bumps to go away. In the meanwhile, Ashley tried to figure out what kind of bites they could be. She’d fixated on the idea of spider bites but couldn’t find anything online that seemed to match what they looked like. On top of all this, she and her fiancé were trying to get last-minute wedding preparations taken care of. Lots of stress, lots of anxiety, lots of exhaustion.
While she was rushing around for the wedding, she bent down to pick up her youngest son, who was then only a few months old. Pain shot up her back. She had two herniated discs. A few days later, she was prescribed steroids to help with the back injury. Unfortunately, she didn’t realize that those bites were from ticks and the disease was already working its way through her. The steroids weakened her immune system even further and allowed the disease to thrive (you can learn more about the effects of steroids on Lyme disease here).
One day, she lay on the couch while her back was healing, and decided to watch a documentary titled “Under Our Skin.” One of her clients had Lyme Disease and had mentioned the documentary about it. As Ashley watched, something clicked in her mind. The film described symptoms she’d been experiencing—things like waking up with numbed hands and feet, waves of exhaustion, and sore joints.
Not long after, she got herself tested for the disease, and of course, the tests came back positive. In August of 2011, Ashley was officially diagnosed with Lyme Disease. Just like cancer, it has stages, and after living with it for so long, she has reached its most advanced stage.
I asked her what type of symptoms she experiences on a regular basis, and she told me that certain ones come and go. Sometimes they only show up during certain times of the year, or sometimes they’ll happen at random times. She says she is usually exhausted all the time. Her body aches constantly. Right now, she’s suffering from insomnia, which makes it difficult to keep up with meeting times and appointments. She never knows when she’ll fall asleep or when she’ll be awake.
She told me about the spoon theory (which you can read about here). This is basically a way to help people without a chronic illness understand the daily difficulties that arise with an illness like this. For instance, I wake up in the morning and go to the restroom, make my bed, put on a pot of coffee, and pick out some clothes to wear. This is my morning routine, day out, day in. I do it without thinking. Sometimes, for someone with Lyme Disease, doing those few things is a full day’s work. Sometimes she gets her clothes on, but she can’t make it out the door. She says she’ll feel great but then twenty minutes later, she can’t stand up.
What’s more frightening at this stage, she admits, is the memory loss and confusion she’ll sometimes experience. She doesn’t drive anymore, for two reasons. The first is that she had a seizure while driving about a year ago. Her arms and legs started spasming. When the paramedics came to help her, they asked her to get out of the car and she couldn’t get her body to obey the orders from her brain. The second thing is, she’s forgotten how to drive. It’s usually only a few seconds, but she’d be driving along and all of sudden didn’t know what side of the road she should be on. These types of occurrences made her realize it was no longer safe for her to be on the road.
Understandably, I hear a sadness in her voice when she talks about these difficulties. I ask her about it, and she reveals that unfortunately, in large part because of her illness, she and her husband have spent the last two years in court going through a divorce. She’s missed court dates due to Lyme. She recalls a time she made it to the court, only to have a seizure in the lobby. I can’t fathom this and am silent, trying to understand how unendingly difficult her life has become. But then her voice comes back stronger, and she tells me she’s feeling hopeful because now that everything has been finalized, she’ll have more stress-free healing time. She hopes that this will help to combat the onslaught of symptoms she’s had since last December when she caught the flu.
Ever since being diagnosed, she’s been struggling to come to terms with the fact that her life is forever changed. She knows she is not the same person she used to be, that she never can be that person again. She’s in constant pain and has been bedridden since this past December, which means finding work has been impossible.
Much like cancer, she will never truly get rid of this disease. There are so many what-ifs she struggles with on a daily basis, and I wish with all my heart that her story had gone a different way. However, she retains a hopeful spirit, sharing with me that having this disease has also given her a purpose that she’s only now understanding. That purpose is to share her story with others and raise awareness. She wants the world to know about this disease and how easy it is to prevent it, if only we know about it in advance. While we chat, she even throws an idea out there of making a documentary so that others who are going through this won’t feel so alone.
So here’s more info. Please share this with your friends and family. Let’s get the word out there so that we can prevent this life-altering disease.
What Is Lyme Disease and How Do You Get It?
Lyme disease is an infectious disease caused by bacteria that is transferred by select species of ticks. In North America, there are two types of ticks that carry the disease. In the North and the East, the deer tick is the main carrier of the disease, and on the West Coast, the black-legged tick is the main carrier. Usually ticks in their nymphal stage are the most prevalent transmitters because they are small enough to go undetected by us, the host (the ticks are about the size of a poppy seed), thus allowing them to stay attached for longer periods of time. It can take anywhere between twenty-four and forty-eight hours for the host to become infected, and the tick must be attached the entire time.
What Are the Symptoms of Lyme Disease?
The symptoms of Lyme Disease are varied from person to person, but the most common ones are fatigue, headaches, rash, and malaise. However, only about 80% of infected people develop a rash, which can make this disease not only difficult to detect but difficult to diagnose as well (source). The longer it goes untreated, the harder it is to combat. Lyme disease can also cause arthritis and joint pain, back spasms, and in extreme cases, memory loss and loss of motor skills.
How Prevalent Is Lyme Disease?
In the US, there were around 36,370 reported cases in 2013 (source). However, over the past two years, there has been a significant increase in reported cases.
Below is a map that shows the density of reported cases of Lyme Disease in the US for 2013 (source).
Even though the types of ticks in Texas are not usually carriers of the disease, as we can see with Ashley, there are always exceptions to the rule. Unfortunately, many people aren’t aware of the disease and how it’s transferred. Since infection usually happens in spring and summer, it can only help to raise public awareness and possibly prevent future infections.
How Can I Prevent Lyme Disease?
The most effective way to prevent contracting the disease is by using insect repellant, wearing protective clothing while hiking or moving through tall grasses, checking for ticks after spending time outdoors, and promptly removing any ticks that are found attached. If a tick has attached to you or a loved one, there is no need to panic! You can find instructions for their proper, CDC-approved removal here. Only about 1% of tick bites lead to a Lyme Disease infection, but as the old adage says, knowing is half the battle. Conduct routine tick checks on both yourself and your pets.
Time is of the essence for Ashley. In two months, she will run out of her savings and potentially face homelessness. If you’d like to learn more about Ashley and possibly donate to help her through this disease, please visit her YouCaring page. Or, if you’d like to donate straight to the Lyme Disease Association, go and donate in Ashley’s honor. We’d also love for you to share this info with your friends and family or via social media to help raise awareness.