Know Better, Do Better

Author:  Paula Jackson Jones
Orig Pub:  12/29/2017

American poet, writer and activist, Maya Angelou wrote “Do the best you can until you know better. Then when you know better, do better.” As we look back over time, we can see where “knowing better” has brought about the “doing better”.  Take the automobile, for example. Just look at how far we’ve come from Henry Ford to the Ford corporation today. Technology is another change. We’ve gone from hard wired phones to cellular, computers to tablets. I could go on, but I think you understand my point.
Maya Angelou wrote about first hand exposure to trauma and discrimination, finding her voice and character strength under the thumb of opposition. Being an African American woman during a racial charged era, it was not easy to speak out, let alone speak out with inspirational words of encouragement to those in similar plights.
As an advocate, my focus is first and foremost to the patient, getting them connected to necessary…

Resolutions: It's Time For Change!

Author:  Paula Jackson Jones
Orig Published:  12/21/2017

As 2017 nears its end, many reflect over the past year, embracing the good times, thankful that the difficult ones have past and consider some necessary changes for 2018.
I have been known to make a resolution or two, as I’m sure have many of you and most of those either never came to fruition or fizzled out. It wasn’t because my heart wasn’t in it. Maybe it was because I was more comfortable with the way things were that I couldn’t bring myself to commit to the idea of change. Change can be hard, even painful at times. Change requires a different mindset. You must stop thinking of things the way you always have and start thinking in the way you want to see come about. You must commit to something that hasn’t yet happened but that you have a great desire to bring to fruition.

The definition of Resolution is as follows: 1) a firm decision to do or not do something; 2) The action of solving a problem, dispute or contentious matter

Marred Expectations

Author: Paula Jackson Jones
Orig Published: 12/13/2017

There are times in our lives when our expectations are marred by the reality of the situation. Take the holidays for example. Children behave as best they can, sit on Santa’s lap and leave milk and cookies, in hopes of finding a new bike, Xbox, pony or puppy under the tree Christmas morning. For some, those expectations are met. For others, the expectation is marred by circumstances whether it be due to financial issues or some other issue beyond the comprehension of the youngster.
Beyond comprehension is where Lyme patients reside. They don’t feel well so they go to their medical provider with the expectation that they will be treated and returned to good health in a quick fashion.   Back in 2009, I had the expectation at that initial visit with my medical provider that I would find answers and get better and when that didn’t happen, visit after visit, provider after provider, I began to lose hope of ever feeling better again. Each…

The Power of Using Your Voice

Author: Paula Jackson Jones
Orig Published:  12/7/2017

Something that I’ve noticed happens to chronically ill people is that they tend to over time lose their voice. Not literally but figuratively. As the duration of their illness goes on over time, they start to feel invisible and as they slowly lose hope of ever regaining their health back, they become quieter and quieter thus losing their voice.

Sometimes this is caused by those entrusted to care for them. Patients are acutely aware of how friends and family react to their ongoing health issues and tend to not discuss them. Or how they are treated at a medical appointment when they raise a concern and it is met with disbelief or distain. After a while, the patient stops complaining or even talking about their illness and isolation sets in.

As an advocate, I am constantly encouraging people to use their voice when they feel that their needs are not being met. I do not encourage anger and confrontation but empower them with knowledge and…

Lean On Me

Author:  Paula Jackson Jones
Orig Published: 11/29/2017 

How do you explain to someone something that they have never personally experienced? We use analogies but sometimes even that is not enough. Sometimes, until someone experiences what you are going through, there is going to be a void in the fullness of understanding.  When I give a prevention talk or share my personal story with someone newly diagnosed, I use a lot of analogies to help make the connection to better understanding. Tick-borne disease is a very complicated disease and until someone experiences for themselves firsthand, there is going to remain a void.

Such is the case with prevention. I can talk until I’m blue in face about the importance of using prevention products on your skin and clothing and pets to protect against a tick encounter. I can educate that ticks are still active in temps above 32 degrees. But all that goes by the way side until someone finds a tick embedded on them, their child or pet. Then panic and …

Facing Holidays with Chronic Lyme

Author:  Paula Jackson Jones
Orig Pub:  11/25/2017

Nothing reminds you of your illness more than when you’re limited by the things that you can no longer do and the places that you can no longer go. And nothing highlights those limitations more than the holidays. Grieving the loss of holiday traditions, or feeling like you’re letting your friends and family down by staying home or cutting outings short, can elicit so many difficult emotions that no one should have to deal with around the holidays.

No one ever thinks that something as tiny as a tick bite can change their life in so many ways, until it happens to them. I sit with people in person and on the phone who are struggling to understand this disease, struggling to make sense of their new normal, struggling to keep it together for their families. Struggling. It’s something that chronically ill people do constantly. Everything is a struggle. Getting up in the morning, even getting through the day. Trying to plan events. Even somethi…

Message In The Storm

Author:  Paula Jackson Jones
Orig Published: 11/15/2017

“Strength through adversity. The strongest steel is forged by the fires of hell. It is pounded and struck repeatedly before it’s plunged back into the molten fire. The fire gives it power and flexibility, and the blows give it strength. Those two things make the metal pliable and able to withstand every battle it’s called upon to fight.” [Author Sherrilyn Keynon]
It is often stated that some things can only be learned in the storm, forged in the trials of fire. I’ve encountered hundreds of people whose lives were forever changed by the storms that they walked through. I am one of those whose life was forever changed. 

I am empowered, not entitled, I survived my storm, and this is my message.

I was an active, outgoing, very happy woman before I got sick. I had just gotten remarried, had a wonderful job and life was good. Then I was bit by a tick one fall day while out cleaning up the yard with my husband.  The tick had not been on me t…