FAQ’s about Living With Lyme Disease

FAQ's Lyme

When most people meet me in person they have no idea I have Lyme Disease or the struggle it’s been to get to this stage where I don’t look sick. I’m actually thankful for that, it shows me that all of the hard work is paying off.

But I’d love to share with you a few of the frequently asked questions I get about living with Lyme Disease and my thoughts along the way.

You don’t look sick. How did you know you have Lyme?

Well about 15 years ago I not only looked sick, but I looked like I was about to just give up and die. In fact, I was so ill that I spent a long time thinking about how and when I would die.

My symptoms flared up hard right after the birth of my third child.  The hormonal shift, the different climate after I’d recently moved to the very hot and humid Baltimore, Maryland area, and a lot of stress triggered my body to begin attacking itself and the abundance of Lyme bacteria in my body.

It took a few years of testing, trial and lots of errors, before I actually was diagnosed with Chronic Lyme Disease.

Isn’t Lyme Disease treatable?

I probably got Lyme disease as a young girl growing up around farm animals and always in the woods.  I remember getting really sick when I was around 11.  My family doctor had thought I had Rocky Mountain Spotted Fever.  A disease that was similar.  There was even talk that I might have had leukemia, but after time spent at the hospital it was ruled out.  I was sent home to recover and that was the last of it. However I was never actually treated for Lyme Disease and that bacteria lingered in my body for years, spread, and 25 years later managed to get into my brain.

If discovered within the first 30 days, Lyme disease has a very good chance of being treated with high doses of antibiotics.  But for many of us, we just think we have the flu or something simple.  In the early stages, Lyme really just feels like you have the flu.

Can Lyme Disease kill you?

The answer is kind of complicated.  Yes, without treatment Lyme Disease is a bacterial infection that sweeps through your body and tears it apart.

Living with Lyme disease means you are in a constant battle to make sure your liver is healthy, your kidneys are doing their job, your heart is beating properly, and so on. Not only do you have to take meds to deal with the symptoms, you need to also watch to make sure the meds are not destroying your organs while trying to help you.

However the most startling thing to me when I began researching how I was going to survive this disease is that the most common cause of death with Lymie ( people living with Lyme disease ) the one thing that kills the most of us… suicide.

The mental issues that comes with living with a long term illness that make you suffer with wide spread pain, poor sleep, muscle control issues, and more are awful.  When you turn to educated medical professionals for help and many are told “that it is in their heads” or they just need to “suck it up”, the forecasts for many people facing that sort of life alone seems pointless.  Depression, anxiety, and suicidal thoughts not only are a part of the disease but a result of facing an uncertain future with a disease that doesn’t give you much hope.

How are you so calm about this?

I actually get this question pretty often when I talk to people about Lyme Disease. The fact is that I know that every day I think about my life with Lyme Disease.  It’s there from the first steps I take in the morning with the pain in my feet from the disease weakening the tendons in my feet til the last moments until I fall asleep when I feel the tremors ticking away at various parts of my body or the insomnia that comes with a new drug or stress.

As much as I like to think that I have Lyme Disease and it does not control me, it has drastically impacted my life and the way I live.

Every bite of food I take is considered.  It’s thought that gluten and dairy have a negative impact on my health.  I’ve developed allergic type reactions to both of them as well as dozens of other common foods.

I have to think ahead about how much activity I can do in a day and how I want to use the energy I have. Do I want to go out for that long hike with my family or do I want to get the house clean and finish up my chores?  You have to choose.

But how do you stay calm?

Here’s how I think about it.  Stress causes me physical pain. I can’t change the fact that I have Lyme and I can’t force a cure.  The only thing I can do is to do everything in my power to be as healthy as I can be and stress, fear, and depression about something I can’t change isn’t healthy for me mentally.

Yes,  sometimes get so overwhelmed with having this disease that I think about calling it quits and taking a peaceful exit. But I love my family, I love every minute I get with them and it isn’t fair for me to want to shorten their time with me.  So I’ll keep fighting.

I do yoga, I meditate, I take long baths and sometimes I even enjoy living in an area where medical marijuana can take my pain away for a few hours.    I can do this and sometimes I need support from my friends and family to remind me that I can keep climbing up this hill. But I can do it.  That’s how I stay calm.

Do you have any questions you would like to add to my list?

I’d love to hear your questions and I might even add them to this list or make a whole new one!

Love, Crysta - Dancing With Fireflies

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