I had this great blog all written in my head this morning. It has taken until now for me to feel up to getting on the computer, and now I can't remember the meaningful words I had wanted.
So, I will try to write the same thoughts down, but it probably won't be as well written as what I had transcribed in my head.
As many of you probably know, Scott and I were interviewed for a news story on lyme last week.
This news story introduced me to many more people suffering with lyme, as they reached out to contact me.
I am overwhelmed by the number of people suffering in our state, who have no support system. All though I am stressed about money and paying for treatment along with paying are bills, I am lucky to have supportive family and friends who actually BELIEVE we are sick.
This disease is horrible. People suffer for years with no answers. Their support system gets tired of hearing about their ailments, especially when doctors are telling these individuals there is nothing wrong, or its all in their head. I heard a story of one lady who went to the doctor with her husband due to the seizures she was having. The doctor told her nothing was wrong with her and when the husband asked about the seizures the doctor told him that his wife was just having tantrums. Can you believe it? I would have a hard time believing it if I hadn't experienced it myself.
So, Lymies suffer for years, friends and family get tired of the constant illness, the sick individual is slowly abandoned and ignored.
This isn't the only reason Lymies have a hard time maintain a support network. Even if we never tell anyone about our illnesses and attempt to function normally, we still are sick. Maintain friendships is near impossible. I can speak for myself on this. I never have had the ability to socialize on a personal level. I have never been able to visit people, or hang out with friends. I often blamed it on having a job and running a business, but the truth is I was just plain exhausted. I was to embarrassed to tell people I couldn't go out because I wanted to stay home and sleep. Making plans was impossible because I never new when I was going to have a headache. Most times that Scott and I tried to go out, I was miserable because the extra activity almost always caused a severe headache. Sundays were especially frustrating. Scott and I would both have the day off, but after church we came home and went to bed. We needed to rest up to prepare for another busy week. The kids were always forced to fend for themselves. If we wanted to do a family activity we had to skip church so that we could sleep in, allowing us to have the energy to do the activity in the afternoon.
So, as you can see, people with lyme struggle to maintain a support system. It's not like suddenly having a accident, or coming down with a disease like cancer. In these scenarios, the sick were previously healthy and had maintained healthy relationships. These established relationships help the suddenly sick to get through their crisis.
Lymies often have been sick for years. They are often isolated, or if they work their relationships are superficial with no depth. When the lyme takes over so that they can no longer function on there own, there is no one left in their lives to help.
I have heard this over and over again over the past five months. It is heartbreaking to hear people talk about how excited they were to finally get a diagnosis only to have their families not believe them.
And hear we are. The CDC suspects 300,000 new cases of lyme a year. This is a number of epidemic proportions. Along with getting infected through a tick, babies can get infected from their mother, and a study was just published indicating a high probability that it is transmitted sexually. Those of us in the lyme world aren't surprised. There are thousands of couples who are both infected along with their children. Despite this, our government denies the existence of chronic lyme. Doctors aren't educated on how to diagnosis. The CDC says diagnosis has to be done clinically, based on symptoms. The doctor in my news story made the statement that tests were very accurate.....WHAT?! Even the CDC says they aren't! To add insult to injury, our government only allocates $25,000,000.00 a year to lyme research. Compare this to the hundreds of millions that they give to other infectious diseases. I am not exaggerating when I make the statement that THE GOVERNMENT IS IGNORING A PANDEMIC!
Just like when citizens had to fight hard to get the government to pay attention to AIDS through protests, we need to stand up to the government again and demand attention be paid to lyme disease.
THERE'S A PROBLEM, those of us who are sick and desperate for our government to pay attention, are to sick to stand up and fight. Unfortunately, our illness has also caused many of us to lose our friends and family. We have no one to stand up for us.
So, here is my plea.....our problem could one day be YOUR problem. You have a choice. To continue and ignore what is happening to the citizens of our country, our state, our world, or to stand up and demand something be done. Yes, I said our world. This is a problem in many countries, not just ours. This is a problem that is literally in your back yard. I am going to post my news story. I want you to watch it, watch it close. A year ago I was on the news preforming martial arts, and now I am on the news unable to walk and having seizures. THIS COULD BE YOU NEXT! This isn't a fear tactic, this is a statement of fact. For all you know, lyme is growing in your body right now. Ticks are very small, you could have been bitten by one and never known it. So you aren't just standing up for me and my family, you aren't just standing up for those in your community who are sick, you are standing up for yourself!
Click HERE to watch my story
Maine Lyme Disease Rally and Protest
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