As I have been stating for weeks now, I was going to put a news section at the bottom of my website that was going to have a live streaming feed of Lyme news from the lymedisease.org website but it turns out that they don't run a RSS feed anymore. Then I tried to load The Guardian News' RSS feed onto the news portion of the section and it wouldn't take it the way that I wanted. Lastly, I could not find a site that focused solely on the good works of people which was supposed to be the third part of the section. I am sure they exist as I have stumbled upon them by accident at times but when actively searching, I could not place my fingers on one. So, in this case I guess it will have to be " no news is good news..."
I had such high hopes for that section so you guys could just come to my site every morning and get all the news that you needed for the day in one place while you got caught up on the latest blog entries but it hasn't fallen into place just yet. I haven't given up on a news feed of some sort right now but my true goal is for you to have news on what is going on in the Lyme Community so when I find a quality site that provides that which has a RSS feed, I will find a way to connect it to this site. The best way to fight this disease is with PATIENCE and EDUCATION. The more you know about what you are fighting, the better equipped you are to fight it!!
In its place, I have created a photo gallery. In looking at the statistics of who looks at my blog and which blog posts do the best, it seems that my audience likes to look at the photos I post. Therefore, I have decided to post a photo gallery at the bottom of the website on certain subjects that I have shot multiple photos about. If there is an explanation or some history about the subject, I will tell you about it and then you will have six or more photos that will stay up for 7-10 days so everyone has a chance to see them. After that, I will change all of the photos to a new set and a new subject. I think this change is a positive one but I have not forgotten my ultimate goal of getting an RSS news feed connection to a RELIABLE Lyme news source for all of you. I will keep searching.
One last plug for the book and then I am getting off this elbow which is particularly sore today. If you are not aware, myself and 32 of my closest blogger friends got together and wrote a book!! It is called When Bodies Break and it is being sold on Amazon for only $8.99 paperback but the best deal is the e-reader price is only $4.99 or FREE if you have Kindle Unlimited!! This book was a three year labor of love, self-published, edited by yours truly (ME!) and all of the proceeds are going to benefit the Benaroya Research Foundation. They specialize in research of the causes and cures of autoimmune diseases such as DM1, MS, Crohn's, Lupus, RA, even allergies and asthma.
This book is kind of like a "handbook" for the chronically ill to encourage them if they have either been newly diagnosed with an invisible illness such as Chronic Lyme Disease, MS, CFS, ALS, ME, MCS and other such diseases. If you don't know those abbreviations, I guess you need to buy the book eh??? The first section contains all of our personal stories about our lives and our battles with each of our own conditions. It is very interesting to hear how each of us has been stricken with different illnesses and yet we suffer a lot of the same complaints and concerns.
The second half is the most important. It contains our advice on tricks, tools and methods to utilize, to cope with all the stages of your disease, how to cope with the emotions you will likely face, how to cope with relationships and how they will change, the ways to cope with the losses you will face such as job - money - hobbies - physical limitations - etc, and we give you charts - lists - and questions you should ask healthcare providers when you have appointments or emergencies. We talk about navigating disability, getting your paperwork in order and the bulk of the second part is how to start your new life living a thriving, constructive life despite your illness. YOU are not your disease and this book helps you find a way to get back to living while coming to grips with managing your illness.
We show you that you can go on to live a productive, long life even right from your bed if you have to! There are women in this book that are running companies right from their recliners at home because they are too sick to go into an office anymore. The technology of today is so advanced that you can do just about anything that you set your mind to if you utilize your talents and think outside the box. You are never too old or too sick to start a career over or to live your life to its fullest!! If you ever doubt that, you just look at the accomplishments of Christopher Reeve after his horse accident or Stephen Hawking in his motorized chair and specialized laptop machine that would talk for him as his ALS progressed. Just because his body was failing him, he refused to let his mind be trapped in that body. With a little creativity and a lot of desire, you can do just about anything your heart desires.
Take me for example. I spent the first three years grieving the loss of my medical career and grasping at the last clutches of a rope that was dangling me off a 50 story building that I was NEVER going to be able to climb again. It was up to me to let go of the rope. I personally had to come to that realization before I could honestly devote myself to something else with a clear mind, body and soul. Once I was prepared to let 20 years of blood, sweat and tears be a part of my past then I was prepared to say to my new Lyme self, "What are you going to do for the rest of your life, be it long or short?" I considered my skill set and the fact that I was bedridden and might be for some time. That is when I started writing.
I had always loved writing and had taken numerous english and writing courses in college. It was all part of my early aspirations to go into Broadcast Journalism. I originally wanted to be a television reporter which tied in nicely with my love of photography. My older brother had been shooting movies for a long time and I was often taken along on shoots to be an extra camera-man. It was so much fun that I thought getting paid to do that would be an incredible life. As things often go, there were many twists and turns that caused my life to take a completely different course but that is where my writing truly became honed and where I realized the power of the written word.
When I got sick, all I could do was mourn and maybe that is the stage you are at, so reading this feels like an impossibility to you right now. That is ok too. The time will come where you don't feel so sick, where everything doesn't revolve around what time your next pill needs to be swallowed or your next IV bag needs to be hung, where you don't have to be thinking about what ingredients you are going to change in your smoothie because the chard is giving you heartburn.....I promise you, there will come a day when you will say, "I am bored. What is the next adventure for my life?" That is a good thing. It is just one more sign that you are on the path to recovery. You have recovered a part of YOU.
So, that is the update on the blog, the promotion of our book When Bodies Break once more, the story of how I ended up writing as much as I do and how I think that you can be helped by our book. I think about writing my own book someday. I have 16 pages already started and that is just the story of the morning that I found the tick on my head and the beginning of my symptoms so there is plenty to write about just covering this past seven years!! I don't know what direction my own personal book will take as my illness is only one facet of my life. I have been a daughter, a sister, a wife, a waitress, a person who opens restaurants for a living, a phone operator, a student, a paramedic, a physician assistant, a caregiver and a care receiver. I have been healthy and near death. I have lived from New Hampshire all the way to the Panama Canal in times of peace and times of War. I have loved and lost until I thought my heart would break.
Therein, lies our common denominator. Sick or well, student or stay-at-home mother or career worker, northerner or southerner....we all live, love, laugh, cry, hurt, suffer, marry, divorce, raise children, cherish pets, read, write and dream all the same as everyone else on this planet. Sickness can strike anyone at anytime and you are never prepared for the diagnosis when it comes. People avoid the doctor for years despite persistent coughs, growths that they know aren't right, twinges of chest pain, abnormal bleeding after menopause and a whole host of other medical issues just because they can't face the fact that their life is about to change drastically. They believe that if they avoid it then maybe it won't be true or that it will all go away. I am here to tell you that it won't so face the music and get treated before it is too late.
If you have a condition that you are hiding from your loved ones that is concerning you because it is not getting better, it is worsening or it interferes with your work, time with family or your other activities in your life then it is time to face the music and do something about it. Putting your head in the sand only allows the problem to continue and now you have an ear infection from the sand fleas that got in your ears while you were down there contemplating your situation. In the case of your health, one phrase could not be a bigger lie than "no news is good news..."