In my first entry I failed to mention the difference between Lyme Disease and Chronic Lyme Disease. Strange when you live in world of illness, you become accustomed to using words and acronyms assuming they are familiar to everyone.
Chronic Lyme Disease refers to people who still have symptoms despite treatment. In my case, I have Chronic Lyme Disease. I have been in treatment, on and off antibiotics for 2 years, and still have remaining symptoms. When off of antibiotics I get sicker. I also have two co infections of Lyme Disease; Bartonellla and Babsiea...two Tick Born Diseases (TBD's) which piggyback along the the Lyme infection to make treatment even more difficult and the symptoms even more confusing to weed out. All of these diseases I have had for quite a long time.
Chronic Lyme Disease is not recognized by the mainstream medical community, nor by the bulk of health insurance companies. There is little research and almost no funding. Patients and their families are forced into "experimental treatment", while watching their bank accounts dwindle. They start to choose between paying bills and paying for Lyme Doctor visits. We are the orphans of medical care in the United States. We have to navigate on our own, and hope for the best.
I was reading Amy Tans' website yesterday. She is the author of books such as "The Joy Luck Club", and a fellow Chronic Lyme Patient. She has suffered as much as all Lyme Patients. You can read her story here: http://www.amytan.net/ under the Section "SLyme Disease." I found it frightening that she is building a house for the future which is wheelchair accessible. It really bothered me that she is famous, has more money than most of us and can to pay for any kind of treatment. She is planning her future, and quite blatantly accepts it may be one with a wheelchair. Another nail in coffin. This disease is devastating. It has huge consequences. It scares me.
The holidays are fast approaching. When I started seeing TV commercials the day after Halloween, advertising specials for Christmas, I felt a shift in my soul. This will be my third Thanksgiving and Christmas sick. It means that I have felt like I have the flu, dealt with nerve and excruciating migraine pain, insomnia, and body aches (to name a few) for over 700 days. 700 days is a long time, for me anyway. The holidays represent a time of family and joy, sharing and visiting. I feel like I have nothing to share and nothing to be joyous about. I am worn out. I don't want gifts and I don't want to give gifts. It sounds selfish, I know. But my spirit is broken by this disease. Some days I don't know how I will make it through to dinner. Looking ahead at the hubbub of the holidays completely overwhelms me. I am looking forward to seeing my daughter and son, coming home from school. I look forward to their energy in the house, but I am saddened that my role as their mother has taken on the hue of a chronically ill person. It's not fair to any of us.
Lyme Disease, with all it's deception and trickery is not the slightest bit fair.
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I am officially a "follower" of your blog. But more than that I plan on being your cheerleader and give you moral support when needed as you have for me. This Lyme journey has to end positive for all of us, the alternative is just not acceptable.
ReplyDeleteLynette
I teach 7th grade students. I have my kids read an Amy Tan story every year. It's called FISH CHEEKS, a story about a Christmas dinner in her past. The irony is powerful when I hear you write about Amy Tan and your holidays in the same blog. It is fair to say that I will NEVER teach that story the same way again. I will now, after being educated by you, teach my students about her disease AS I teach that story. LAURA BALDWIN
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