As a chronically ill person, I have found the only way to make it through each minute, each passing day is mindset and hope. The hope that with every pill taken, every new doctor’s appointment, every treatment that there is light at the end of the tunnel. The hope that one day you wake up and the nightmare you have lived has come to an end and you are now a survivor no longer a patient. There are mostly up days but the down days are just that, a day where your hope has depleted and tears begin to shed. Lyme and its coinfections truly take no mercy when it seeks to take over your body. It burrows into every nook and cranny it can find a new home in and leaves a path of destruction in its wake. The whirlwind that has been treatment these last 4 years has taken every bit of patience and strength I have with some days taking the win. The journey has been overwhelming to take all in and to understand every facet of what doctors have said. I am finally to the point of taking a deep breath and learning what every pill is for, reviewing all the tests and procedures undergone. I think it is finally time to understand better the damage it has caused that might not ever recover. Let me tell you, out of the handful of pills I’ve taken in the last few years, this is the toughest one to swallow. I was referred to a new Lyme doctor that has been in practice for over 30 years. I am going to take the plunge and plan a visit so he can assist me in understanding what remission truly means to me. To be able to understand what the “new” me really means might be tougher than I might be. There is no real hope to repair the damage in my brain ( ½ swollen, ½ shrunk, frontal lobe & brain stem damage) , nerve damage to my right foot / leg and left arm/leg is probably a forever thing along with the damage to my left eye, eye socket and heart. Not what one hopes to hear but sometimes the hard facts are just that hard. We will look into the rest of the damage and assess. Maybe there is still hope for some improvement on those fronts.
If only the doctors had just listened and taken the time, maybe just maybe things would be different. With every passing day it took for me to find answers, the disease just took over another part of me and made it theirs. Over 3 years for it to change my world forever. If only the tests were accurate. How in this day and age can we have a test that misses over 65% when we can put a man on the moon? To all who just said I was “ crazy” maybe it was truly you who needed to take a step back. If I could yell LYME IS EVERYWHERE I would but what does that really mean if they won’t listen. I read a quote once, “You don’t get it until you get it”. Nothing could be more true. Until you or your loved one fights for their health, their life, drains their savings and is ignored by those who are paid to listen to heal, then it is not an issue. Take it from me, it is a huge issue.
I will take a deep breath and make that appointment that I truly do not want to. How can one really move forward and heal if they live in denial. I know there is a reason for everything though there are days I question what that really is. I know I was given this journey to help others not have to. Guess they thought I was stronger than I ever thought I could be.