Friday, May 22, 2015

Lyme Disease Awareness Month - Guest Post


I have known a few people over the years who’ve battled Lyme Disease. It is a debilitating illness that few understand. May is Lyme Disease awareness month. Click here to learn more about the cause, prevention, symptoms, and diagnosis.

According to the CDC, “Lyme disease is a multisystem disease…transmitted through the bite of certain species of blacklegged ticks… In 2013, state and local health departments reported approximately 35,000 cases of Lyme disease to CDC, making it the fifth most commonly reported nationally notifiable condition…as many as 300,000 persons in the United States might be diagnosed and treated for Lyme disease each year.” (cdc.gov)

I’m privileged today to welcome Paula Jackson Jones to share her story through a poignant letter she wrote to herself five years after contracting Lyme Disease. If you know someone who has been newly diagnosed or has suffered for years, this will give you insight into their struggle. If you’re the one with the diagnosis, I hope Paula’s words will be an encouragement to you.

Dear Paula 2009,

I know this is going to sound strange, but in just a few short months something is going to happen to you, something that you are not expecting, something you didn't ask for or were even aware could happen. Your life is going to change in ways you never fathomed.

I am writing this letter in hopes to prepare you, to bring you some comfort, for what lies ahead is not pretty or easy. I know you consider yourself a strong, resilient woman. I know what you've been through, what you've survived. I am here to remind you that all that strength will be needed, will be used. All those coping skills will become an asset in ways you never thought you'd have to use them. I am here to assure you that you will survive it even though there will be times you'll cry out to GOD to call you home, when the pain is so unbearable it supersedes any other thought.

I am writing this letter because I know how you think, how you operate, and I want to tell you that what you think and what you know will be challenged. People you trust will fail you, turn their backs on you, and walk away. They will mock you because they won't understand what you're going through. I know how frustrated you'll become because you won't understand it either. You'll want compassion and support, and I am here to tell you that you'll get it—but in the most unconventional forms.

Don't worry about the ones who let you down, who walk away, because their absence will make room for all the new people who will come into your life; people who share this journey with you, who understand you in ways even those closest cannot. They will inspire you with their stories, educate you with their experience, and encourage you to fight the good fight and stay the course. One day, they will recruit you to join them as a fellow Lyme warrior, Educator, Advocator, and Supporter.

I am writing this letter because, although your body will break down and you will lose sight of the woman you once knew, you will be rebuilt into something stronger, something greater.

Now listen, you survived all those things before this, this path will strengthen you even more. It will grow you in a direction you never thought about but are needed in. And as you grow, you will have all the support you need for every step of the way. I need you to remember this part because you will lose every ounce of strength that you have. Even the most mundane daily chores will be taken from you. You'll be attacked from all sides—physically, mentally, and emotionally.

I am writing this letter to assure you, although there will be some very dark moments filled with some of the worst pain you've ever felt, you won't be alone. Your cries will be heard, your tears collected. All your ashes will be saved and restored one day. I am here as living proof that you will survive this pain, the darkness, the despair, and even the heartbreak of everything that you will lose. I am here to tell you pride won't get you anywhere. You will have to ask for help. It will humble you and from there, you will grow. There are lessons to be learned, and whether you want to or not, you will learn them!

Now this next part of the letter may be difficult to read and even harder to grasp.

Those doctors whom you've place all your trust and faith in will fail you on the first part of your journey. They will challenge you and exasperate you. You're going to face some difficult times and hear some not-so-nice things. You're going to feel alone and desperate. You're going to feel lost and hopeless. But I am here to remind you to stay the course, don't give up because Hope is out there. You just need to keep going and connect the dots. You're going to have to listen to others who have gone down this path, and you'll need to filter things and do your own research (that part I know you will love). The frustration will come from the many walls you hit, but keep hitting them, for one day they will crumble, and you'll see a path that will take you in a different direction.

Please trust me—you want to take this path.

As unconventional as this path may seem, it’s going to save your life. You won't understand a lot at first, but the people you meet on this path will teach you in ways so you’ll fully understand everything and know what to expect. They will stay close to you and check in on you. You will never feel alone again. They will empower you with their unconventional ways and empower you to want to get better, to want to make a difference...for others.

I am writing this letter because I don't want you to give up hope. I can't say how long this bend in the road will be, for I am still here on this journey five years later but so much better than I ever was. I can say now that I never thought this day would come—but it did. I will tell you that you will get better but not before you feel worse. That is just par for the course but remember these words—you will feel better and you will see your life going in a new direction.

When you first become sick, you're going to think this will pass. I am here to tell you that it will, but it will take time. It will get worse before it gets better; that is just how chronic illnesses work. This illness will forever change your life. It will break you down physically as it grows you spiritually. It will strengthen core values within you that had been ignored and make them a priority. It will change your outlook on life and set your feet on a new path. You won't know where you are going or when you will get there, but that won't matter because you'll enjoy all the stops and people you meet along the way.

I am writing this letter because I know you will find all of this hard to believe. Doctors turning their backs, insurance wars, outdated guidelines by the IDSA and CDC, misdiagnosis after misdiagnosis, and failed treatment. I know how you think. But trust me, it will be bad. It'll be frustrating. It'll make you scream at doctors and reduce you to tears in public settings. You won't care anymore, but I am here to tell you DON'T GIVE UP! There will be many stumbling blocks, but you will advance. You will need to lean on these new friends and borrow some of their strength until you regain yours. Just remember to pay it forward!

I hope I've been able to get through to you, and I know this all sounds like crazy talk (and you will be accused of that too while on this journey). I am writing this letter to tell you to keep pushing forward, don't take NO for an answer. When you hit a wall, keep pounding until it crumbles. When you feel lost, cry out for people are there to help you. When you feel alone, lift your head and look at the thousands who stand with you.

You won't know or even remember all their names, but you'll know their stories and that connection will forever link you to each other and strengthen one another even from a distance. That connection will take a debilitating disease that can weaken even the strongest, toughest person and make them #Lymestrong \0/

Love,
Paula 2014

©paulajacksonjones2014
lymewarrior24/7/365

Thank you for sharing your courageous journey, Paula.

If you’d like to share your thoughts with Paula or offer encouragement, please leave a comment. I know she’d love to hear from you.

God bless,
Laura

“Disease or Health Direction” image courtesy of Stuart Miles/FreeDigitalPhotos.net.
“Unhappy Woman Hiding Her Face” image courtesy of Stock Images/FreeDigitalPhotos.net.
“Hope Puzzles” image courtesy of Stuart Miles/FreeDigitalPhotos.net.
“Hope For Cure” image courtesy of vitasamb2001/FreeDigitalPhotos.net.

5 comments:

  1. Paula Jackson JonesMay 22, 2015 at 9:00 AM

    Thank you Laura for sharing! What was meant to harm me, God has turned around for good. My health storm brought me closer to GOD, under His wing, and His Word sustained me, His promises got me through. GOD bless!

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    1. Thanks for allowing me to share your journey, Paula. God is good!

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  2. Thank you Laura for sharing this. I appreciate this info and pray that Paula will continue to thrive. We have had dogs for over 20 years and never had one tick well in the last 2 weeks we have had 6 ticks. Four bites to dogs and 2 found. One of the two found was dead and one was on Tony. The tick on Tony was crawling on him and we assume had not bit him. My question is this - will a person know if they have been bit by a tick? I have done some research into this in the past few days but have not found a definitive answer. Tony already has so many health issues and I am afraid for him if he has been bit.

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    1. Thanks for stopping by, Betty. I believe you would know if a tick bit you because they don't typically bite and leave. They try to attach. Paula might be able to give you a more definitive answer.

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    2. Paula Jackson JonesMay 22, 2015 at 3:34 PM

      Betty, most people know they've been bitten by a tick one of two ways: they either find one attached and remove it or they become symptomatic and are tested or seen by a Lyme literate Dr (or vet if it's your pet). I knew I had been bitten because I remove it. But there are people who have been bitten, perhaps years ago or in places unseen and become symptomatic down the road and don't equate it to a tick borne disease. Also, when they attach and begin feeding, they anesthetize the entry so you don't feel it as it's happening. If you visit my organization website (www.midcoastlymediseasesupedu.blogspot.com), you find a lot of information as well as a questionnaire that covers many symptoms. Lyme Disease happens in stages and it's my goal to raise awareness do that people know more about prevention and also what to do in the early stages of a tick bite.

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