I Don’t Get It

Because of my illness, I am disabled by the standard of the Social Security Administration. I draw a stipend every month that is based on a life’s work while paying into Social Security. This I get and am great-full to have.

What I don’t get is the medicaid system. Because I am disabled, I draw a small fixed income. However, my doctor visits, lab work, testing and prescriptions cause me to run out of money for food and medicine. If the medicaid system was thinking logically, there protocol would include an allowance for medical bills when considering whether or not an applicant qualifies.

Instead of just looking at my income as the only measure… the only criteria for deciding whether or not I qualify, doesn’t it make more sense to consider the applicants’ medical expenses? If they tell you that you can’t qualify because the amount you draw is $88. more than the limit dictates, it is ridiculous. If they consider what I draw then subtract what I pay out monthly in medical expenses, it would become clear to them that I live below the poverty level.

I can’t be the only one.  Are you out there? Is there someone else like me who “draws too much” to get help from medicaid? Let me see your comments…read your stories. Sometimes a change can start with one voice.


So sleepy…

The last three days, I have spent more time asleep than awake. It is a condition of my disease and something that I really can’t help. Even now, I am so sleepy that I am not sure whether or not I will finish my thoughts.

I have found that, when you sleep a great many hours clumped together like that, it takes a while to realize what is real and what is not when you awake. I am confused about reality, I am confused about what I have and have not done, and I am anxious because I fear that something important has gone undone because I was asleep.

I am sure my body needs the rest because the disease is so fatiguing. The pain that I feel with every movement is exhausting. However, I still feel guilty when I realize that 72 hours has gone by and I slept through most of it.

It starts with a tired feeling that quickly grows to sleepiness. Then my eyelids get harder and harder to keep open. After a bit, I allow myself to close them for just a minute and suddenly I feel like I am being pulled deep down inside myself. From there, it is a battle of wills until finally I can fight no more. The next thing I know it is hours later. I get up for just a bit, and the whole thing starts all over again…

Pain & Panic

For those of you who have never experienced Chronic Lyme disease, either personally or through someone close to you, it is something that can effect every part of your life. Lyme and its co-infections infiltrate the systems of the body if not caught early. Once the bacteria has a chance to spread from the bloodstream to the nerves, joints, muscles, heart, etc, it is very hard to stop. Some of the effects become permanent.

Pain is ever present. Headaches, joint pain, muscle pain, general-overall pain… some days, it is painful for someone to lightly touch me.  My hands hurt all the time… some days worse than others. I awake in pain every day.

My fatigue is so great sometimes that I can not stay awake. I sleep at least 12 hours a day most days. Trying to get dressed, or get anything at all done, just wears me out.

What is worse though is the occasional panic (anxiety) attack. They are very hard to define. Believe me, I have tried to explain it to my mom. For each piece I described of how it feels, she desperately tried to the feeling into a rational “box,” but it just can’t be defined in such a way.

It doesn’t always feel exactly the same, but it always makes me feel very anxious. Sometimes it is like I am trying to jump out of my skin or like there is an electrical current running through me. Sometimes, I get the feeling like I am being pinned down and I can’t move. All of these descriptions are part of what makes these attacks so difficult. It feels so awful…


My sons are in their twenties now. It seems impossible to me that they could be men already, yet they are. They are good men.

My older son, Cory, is an artist and a laborer. He creates beautiful and stunning art with talented hands. Those hands have given life to drawings and words since he was very young. At the same time, those hands work hard through the weekdays in a lumber mill so he can take care of his family and pay the bills. He calls at least once a week and usually texts more often than that. He loves family, and he sees poetry in everything. He is a wonderful and talented man.

My youngest son, Cole, has been responsible since he was a young man. He got a job as soon as he was old enough to work. He managed passing grades while working as many hours as the law allowed for his age. He demonstated such responsibility that I signed for him get a new car when he was a senior in high school, because I knew that he would make the payments. Fastforward a few years, and he is a responsible family man, a great father and provider. His dedication to family is admirable. He is loving and kind.

The night that my grandson Dane was born, Cole was moved to tears. Looking at his son for the first time, he was finally able to understand what it means to love your child. His son will give him moments of joy and sorrow, worry and great pride. I have no doubt that, years from now, he will find his son to be a good man.

great day of college football

I am really enjoying the awesome college football today. NC State beat Boston College, which would have made my brother very happy. I switched back and forth between the UNC/Clemson and the SC/Alabama games. They were both very exciting! Go HEELS! And I have to say, I love a good underdog win- SC definitely delivered. Actually, they didn’t play like underdogs at all. Now, I am watching the LSU/Florida game. Soon, I will be switching back and forth between it and FSU/Miami. Football season makes it hard to see everything I want to see. Maybe I should get another tv or two… lol. Guess I will just keep switching 😦

Advances in Lyme Disease Testing and Treatment!!

I suffer from Chronic Lyme Disease. It is a debilitating disease that affects almost every system of the body. Today, I learned that a major breakthrough has been achieved that might help people like me. This news brought tears to my eyes as I considered the possibility that I might get better someday. Below is the story of hope for the fastest-spreading epidemic about which few are aware. Please read and let me know what you think…

Researchers Determine the Genetic Blueprint of the Lyme Disease Microbe

Released: 10/8/2010 10:40 AM EDT
Source: University of Medicine and Dentistry of New Jersey (UMDNJ)

Newswise — Researchers Dr. Steven E. Schutzer of UMDNJ-New Jersey Medical School and Dr. Claire M. Fraser-Liggett of the Institute for Genome Sciences, University of Maryland, and their collaborators have made a major achievement toward better understanding Lyme disease, by determining the complete genetic structures of 13 strains of the bacteria that cause the disease.

These new discoveries may accelerate research efforts to diagnose, prevent and treat the disease, which can affect the nervous system, heart, skin and joints. The occurrence of the disease has grown dramatically over the past ten years in the United States and Europe. The research, which was funded by the National Institutes of Health, has been published online ahead of print in the Journal of Bacteriology.

Read the rest and comment at http://www.newswise.com/articles/researchers-determine-the-genetic-blueprint-of-the-lyme-disease-microbe