First and foremost, I hope everyone has been having a great* Lyme Disease Awareness Month so far
(*great: able to raise awareness; able to rest; able to participate in life activities; able to just lie in bed; able to listen to music; able to drive; able to sit up instead of lie down all day; able to go on vacation; able to spread the word about Lyme and co-infections in whatever way(s) you can—“great” takes a different form for each person, and often a different form for one person from one moment to the next when fighting these illnesses).
I know I’ve been absent from the site for a while, and I’m sorry for that. I’d love to say it’s because I’ve gotten my life back and simply haven’t had time to write on here, but unfortunately that’s not the case. But since this post isn’t to highlight my current roller coaster of newly discovered health issues (which have left me unable to think, write, read, or generally engage in life overall right now, and consequently unable to keep up with this site for the time being) let’s get to the reason for this post today.
In March, my friend, Ebony, with whom I connected online a few years ago as part of the online Lyme and chronic illness community, posed a question to the community, asking if anyone was looking to feature a guest blogger. Since that’s not something I’ve really been able to do thus far, and since I know her story is similar in many ways to to countless others, I immediately told her I’d be more than happy to feature her post and use my blog as a place she can share her story. Without further ado, you can read her entry below:
"God only gives each of us a certain amount of time to be on this earth and every day when we wake up, we get to decide how we are going to spend those precious minutes and hours. There are no do-overs, no second-chances, no ‘next-time-arounds’ to get it right."
Found this quote on a blog...it spoke to my spirit.
I've given this a lot of thought over the last few months... the amount of time we're given, and what to do with it.
After a life long quest of finding my purpose in this life, I believe advocacy is my calling, in various subjects, including my personal struggles, to raise awareness and hopefully engage with one person enough to make a difference.
I've been as open as possible with my journey with Lyme Disease (judgment is cruel and bad for the soul!). My path took another drastic turn last year: after I was hospitalized in February 2014, I knew things wouldn't be the same... life, as I knew it, had changed.
For those that aren't aware by now, Lyme disease is a bacterial infection, generally transmitted by a tick (but many insects can carry the disease, and other infections can be produced from the initial bite). If treated soon enough, prognosis can be successful and complication free.
Then you have the others, those mixed in that finite number of 300,000 that have fought, and continue to fight hourly, daily, weekly, monthly, yearly...
The others...people that have been searching for "magic", a cure-all for this illness that has taken away so much—those that stand up for themselves because no one believes.
I am one of the others... those on a quest to learn more about their bodies and how our systems operate with this unwelcome specimen.
I've mentioned LD within my very small personal circle, but rarely do I fully disclose what's wrong; it's hard to tell other people your affliction when you have a hard time learning about it yourself.
March of this year marked six years of my battle with LD. The details are quite cumbersome, but I’m currently seeing 5 different specialists outside of my Primary Doctor, as Lyme has attacked major organs, primarily my brain, stomach, and heart.
I'm treating symptoms because treating Lyme itself is controversial and extremely expensive. I couldn't begin to count the visits to doctors, emergency rooms, clinics and test...but I could comfortably say one-hundred twenty (or so) in 2015 alone.
It's lonely. Quiet. Isolating.
The latter has been by both choice and circumstance.
Again, it is very difficult to express your concerns and various ailments when you don't fully understand them all yourself, but you'd think those who are aware of what you’re going through would be around for support: you truly find out who people are when you're at your lowest point.
It has been encouraging. Humbling. Touching.
I've reevaluated the value of my time in this lifetime: teaching my son lessons that will carry him through life, showing him that his life matters and he's standing on the shoulders of greatness, living in a moment of opportunity to be, as he says, an NFL legend, and so much more.
I understand that, regardless of the past, Momma and Daddy will always be there. I know that, if I need them, my Brother and Sister will be there.
This is what matters.
My life. My well being. My faith.
I haven't given up, but I have wised up: being chronically ill puts a lot into perspective. I realize what's important, and that is my son. In a roundabout way, we've had "the talk", about life, how to live your best life, how to roll socks and tidy up (every once in a while!).
No do overs. No second chances.
What have I learned in six years? Make the most of your life; enjoy the good times, learn from the bad. You'll find out who's on your side, usually sooner rather than later. A quiet life is the best life.
A life with Lyme is complicated, but it's also enlightening.
Make the most of it.
I think I'll let Ebony's words speak for themselves. We have not been fortunate enough to start a family yet, so I can't speak to the specific challenges a mother with a chronic illness faces, but I've been privileged to meet many, and their strength is continually inspiring. Any mothers out there that are simultaneously fighting your own chronic illness and raising your children (some of whom are also fighting chronic illness), take this as a not of encouragement. As the last line of the official entry says: Make the most of it. Whatever your "most" is (much like whatever form "great" from the introduction takes for you, personally), it is enough. But it's not enough to dwell not he bad and not make the most out of what you do have. Chronic illness is isolating, yes, but that's why it's important for us to find ways to make the most out of every day, in whatever ways we are able at any given moment.
Stay safe, wear tick repellent, do frequent checks, immediately throw your clothes into the dryer on high heat for 20 minutes after coming inside, protect your pets with flea/tick/other bug repellent and medications to ward them away.
This month is integral for raising awareness, however, raising awareness for this disease is something millions do all year round, and I urge you to join us in doing the same.
Lyme Steals. God Heals.