I have been spending a lot of time on the computer lately and it seems that everywhere I turn, people are talking about Lyme Disease. It is fabulous! I never thought that I would see the day. Could I possibly begin to hope that this disease may actually get some recognition before I die from it? I truly didn’t think it was going to happen.
When I first started searching for why I was “sick all the time” in 2008, I started down the road just like everyone else of being laughed out of doctors’ offices, being told everything was normal, it was all in my head, there was nothing wrong with me, there was no excuse for my pain/sickness, etc. It took three years and 14 doctors before I found my way to IGeneX and my diagnosis of Chronic Lyme Disease.
I knew that I was bitten by a tick in the year 2000 but I never got sick immediately after the bite so I thought nothing of it at the time. I had called the doctor when I got bitten and he said, “Only come in if you start to feel sick with fever or see a rash. Otherwise, you’re fine.” Back then, that was the presiding thought about Lyme Disease. Thank God we know better now and are beginning to get the word out to the community that this is simply so untrue. It’s just a shame the toll it has taken on us (the chronically ill), that it has taken so long for the decision makers to finally hear our voices and begin to realize the truth that this is a Chronic Disease. As each year has passed, we have suffered and many have died while waiting for economical treatment of this disease to become available to the masses.
All of that is in the past now and I am looking towards the future. I hope that the trend of what I have been noticing in the papers, on the internet, on television, in medical journals and around general medical circles is that people are aware of the sins of the past but are more focused on how we can make improvements for the future. That is all we have ever wanted. Let the old argument end and just get us some HELP. Let’s move forward.
It appears that Harvard is now going to be opening a center for Lyme Research which is encouraging. There are people willing to have large corporate fundraisers and big pharmaceutical companies are starting to take notice of this disease which is where all the money comes from of course. But, the biggest concern that I have is that throughout all of this, where is the help for the individual people? It is great that the huge R & D facilities will be getting their millions to discover how the spirochete eats, sleeps and breathes but is any of that money gonna trickle down to the patients who are trying to eat, sleep and breathe?
I just hope that as this disease finally begins to get the recognition we have been so desperately fighting to attain, we will finally get the financial assistance programs to help the patients live with this disease. Insurance should be made to cover Lyme Disease in all of its forms and all of its co-infections and co-morbidities (that means other things that Lyme has damaged on you). All drug prescription programs, especially for those who are disabled, should pay for not only the prescription drugs that we have to take but the millions of supplements we have to put down our throats every year too. Lastly, disability benefits should be granted the FIRST TIME they are requested not after a patient has been denied 2, 3, 4 and 5 times while having to get a lawyer, when they are bedridden with illness, having left their job due to their Lyme Disease symptoms, living off their retirement savings, drowning in debt and then waiting years for their settlement to come through. Dialysis patients are granted immediate disability, no questions asked. It should be the same for chronic Lyme patients.
People with Chronic Lyme Disease have suffered enough. They have lost everything they own, their homes, their health, their jobs and their hobbies. The have sold most of their personal belongings to pay bills, their friends have drifted away into their own lives and their spousal relationships have suffered. How they can play with their children is forever changed but most of all, they have endured such immense physical, emotional and mental pain and suffering there are no words to describe it to you unless you have experienced it yourself. It is about time that this is all coming out of the darkness and into the broad, bright light of day so everyone can see the pure ugliness of this heinous disease.
I am so proud of all the Lyme Warriors who for all of these years have been fighting and fighting, year after year to keep getting the word out there. They have marched on Washington, D.C., organized worldwide protests on MayDay, been on television shows, written endless articles, books, blogs, given lectures and trained people on tick prevention. They put up beautiful billboards on highways all over the nation, held concerts, raised money all sorts of ways for individuals who were in need and they always fought for those of us who were too sick to get out of our beds to be there to fight for ourselves. It is pretty amazing what can be accomplished by getting together this strong Lyme family on the internet from all over the world, who have continually supported each other through thick and thin, when we had no one else to back us up.
It’s OUR turn to be recognized now. It’s a shame that it meant famous people had to get sick to get the attention of our government in order to make changes but maybe that timing is just coincidental… I doubt it. Rather, I will continue to hope that it was just the years of hard work and dedication of the Lyme advocates who have been breaking their backs on our behalf and the people like me who are willing to tell our stories that might bring some positive change into the future of the world. Here’s hoping! Thanks for being a part of that change.