The phone rang on December 24, 1996. My new doctor was on the other end.
"You tested positive for Lyme and Epstein Barr virus.You also have Chronic Fatigue Syndrome and borderline Fibromyalgia."
Yay! I have Lyme! Finally, I was proven right after over ten years of begging doctors to test me. Years of bringing them articles on Lyme, Epstein Barr and Chronic Fatigue Syndrome...you know that "yuppy disease."
I actually cried tears of joy. A diagnosis means an end to my years of misery with fatigue, pain, brain fog, tremors, migraines, confusion, joint and muscle pain,etc. This means an end to all these debilitating symptoms. I can get on with my life, resume my running, biking, hiking, social life... and get back to work.
Dr. W, "I'll put you on a round of antibiotics and that'll knock it right out."
Me: "Yes...yes...yes...great!"
Little did I know, the journey was really about to begin.
Wednesday, April 19, 2017
Thursday, August 25, 2016
Ready, willing and disabled.
Ready, Willing and Disabled.
Back in 1996 when finally diagnosed (after over ten years and as many doctors refusing to test me), the company I had worked for for many years kept me in limbo. They wouldn't fire me so I could collect unemployment, yet they wouldn't let me return. In the interim, my landlord evicted me.
I started my business, Ad Ventures in 1997 shortly after being treated with several weeks of antibiotics for Lyme disease. Lyme disease I had since 1980's when over 10 doctors refused to test me-even with a bull's eye rash. I had to survive somehow. as a single woman with no other financial support, I had to try and pay my bills. I created a home based business and actually started to feel "okay" for a while. I can do this!
So I toughed it out, as many others. I changed my life to fit my illnesses and symptoms.I had to stop accepting invites to parties, BBQs, weddings and other events. I could not commute, sit, stand, think clearly. My pain would also wax and wane, moving like a snake though my body. Sometimes nerve pain, sometimes bone pain, sometimes muscle pain. I just never knew what combination of symptoms would visit me.
Tired of my illnesses being downplayed or ignored by the medical community, I thought the best decision was to simply stop putting myself in the line of fire; It only depressed me and left me deflated and feeling hopeless each time anyway.
After many years of running on the hamster wheel of doctors,tests and prescriptions that left me feeling even worse, I stopped seeing doctors, for the most part, over five years ago
(I think five or six years, timing is not my strong suite with cognitive issues). I also lost my health insurance. Being self employed, I only had a few plans to choose from, I could no longer afford the astronomical premiums after breaking both ankles at the same time (yes, really), so since no doctor was helping me, it seemed the only thing to do.
Which leads me to now. I had to jump back on that hamster wheel. Doctors, tests, evaluations all over again because I have come to the sad realization that I must apply for disability. And nothing has really changed. No help, advice or answers. Glazed over, condescending looks, at best. I put it off applying for disability forever for a few reasons. I love my work. I don't have the strength or cognitive ability to compile and organize all my medical data to complete the application process, even with the help of a disability firm, I don't want to give up. But, here it is - I can't afford to live on disability. I am in foreclosure. I have absolutely no one left in my life who will help or care to even check in on me in the "real" world. .
My business is failing simply because I cannot followup, keep the bookkeeping in order or work on any project for long. I still welcome the occasional order or small project, because I have to pay the utilities,dog food, meds, etc..., but my office is a mes of client folders, notes, and of course, bills.Some days, or more accurately hours, I can pull through. Unpredictable symptoms make it impossible for me to continue to do what I love for any amount of reasonable time. My business requires creative thinking, strategic planning and many estimates and proposals...none of which guarantees a penny in my pocket.
So while ignoring the bills and foreclosure notices when I can, I am concentrating on answering all the delightfully confusing questions about my medical history on my disability firm's online questionnaire. Wish me luck!
Back in 1996 when finally diagnosed (after over ten years and as many doctors refusing to test me), the company I had worked for for many years kept me in limbo. They wouldn't fire me so I could collect unemployment, yet they wouldn't let me return. In the interim, my landlord evicted me.
I started my business, Ad Ventures in 1997 shortly after being treated with several weeks of antibiotics for Lyme disease. Lyme disease I had since 1980's when over 10 doctors refused to test me-even with a bull's eye rash. I had to survive somehow. as a single woman with no other financial support, I had to try and pay my bills. I created a home based business and actually started to feel "okay" for a while. I can do this!
I'd visit specialists for heart flutters, migraines, weakness, muscle spasms, dizziness, low body temperature, weight gain, floaters, sweating, nausea, throat and ear infections, brain fog, unrestful sleep, cognitive issues, neuropathy, and on and on. No one connected the dots. When I mentioned Lyme, EBV, CFS, Fibromyalgia - all of which I had been diagnosed with back in 1996, I never received a straight answer.
So I toughed it out, as many others. I changed my life to fit my illnesses and symptoms.I had to stop accepting invites to parties, BBQs, weddings and other events. I could not commute, sit, stand, think clearly. My pain would also wax and wane, moving like a snake though my body. Sometimes nerve pain, sometimes bone pain, sometimes muscle pain. I just never knew what combination of symptoms would visit me.
Family and friends drifted away, slowly at first. I realized that although dozens attended my parties over the years, only two or three remained in touch when my flare-ups would surface.
After many years of running on the hamster wheel of doctors,tests and prescriptions that left me feeling even worse, I stopped seeing doctors, for the most part, over five years ago
(I think five or six years, timing is not my strong suite with cognitive issues). I also lost my health insurance. Being self employed, I only had a few plans to choose from, I could no longer afford the astronomical premiums after breaking both ankles at the same time (yes, really), so since no doctor was helping me, it seemed the only thing to do.
Which leads me to now. I had to jump back on that hamster wheel. Doctors, tests, evaluations all over again because I have come to the sad realization that I must apply for disability. And nothing has really changed. No help, advice or answers. Glazed over, condescending looks, at best. I put it off applying for disability forever for a few reasons. I love my work. I don't have the strength or cognitive ability to compile and organize all my medical data to complete the application process, even with the help of a disability firm, I don't want to give up. But, here it is - I can't afford to live on disability. I am in foreclosure. I have absolutely no one left in my life who will help or care to even check in on me in the "real" world. .
My business is failing simply because I cannot followup, keep the bookkeeping in order or work on any project for long. I still welcome the occasional order or small project, because I have to pay the utilities,dog food, meds, etc..., but my office is a mes of client folders, notes, and of course, bills.Some days, or more accurately hours, I can pull through. Unpredictable symptoms make it impossible for me to continue to do what I love for any amount of reasonable time. My business requires creative thinking, strategic planning and many estimates and proposals...none of which guarantees a penny in my pocket.
So while ignoring the bills and foreclosure notices when I can, I am concentrating on answering all the delightfully confusing questions about my medical history on my disability firm's online questionnaire. Wish me luck!
Thursday, August 11, 2016
You are my inspiration.
Oh no! Not another Lyme sufferer offering up all the horrible experiences they have living with Chronic Lyme disease! Umm...well, yeah...kind of...but not only that; I need to document for others so they do not feel alone, and also record for myself since my memory and cognitive functions are slipping away.
I'm new at this blogging thing. Yes, a late bloomer. I started a blog once before for business, but I couldn't concentrate enough to do it justice. I hope I can do better for A Journey In Lyme.
I am dedicating everything I do to the hundreds of thousands of invisible illness sufferers around the world. Actually, more like over a million, but who's counting? The CDC certainly isn't.
What I do in advocacy and creating awareness is a drop in the bucket compared to many of the true, brave warriors who tirelessly seek to educate and support the masses.
You are my inspiration. This is why I named my awareness products fundraising campaign, Inspired By You. I was so touched by all the heartbreaking stories of pain, isolation, indifference and financial ruin. I was amazed at the strength, determination, friendship and sharing of information so many generously offered.
I was in the midst of yet another cruel, painful bedridden "flare-up" nearly two years ago. I used pillows under my hands so I could text and scroll through Facebook. There I found thousands of others with the same exact symptoms I suffered on and off over the years. How could this be? So many people as sick as I am, yet none of us have validation or medical support or effective definitive treatment?
Unable to leave my home or barely make it to the bathroom at the time, Facebook became my only real interaction with the world. My new friends. Although ill for over thirty years, this became my new world. My new normal.
I have much to say. I have much to share. I have many to thank.
I will falter, I will complain, I will want to give up. I will brush myself off and get back up again...and again. And so will you.
I'm new at this blogging thing. Yes, a late bloomer. I started a blog once before for business, but I couldn't concentrate enough to do it justice. I hope I can do better for A Journey In Lyme.
I am dedicating everything I do to the hundreds of thousands of invisible illness sufferers around the world. Actually, more like over a million, but who's counting? The CDC certainly isn't.
What I do in advocacy and creating awareness is a drop in the bucket compared to many of the true, brave warriors who tirelessly seek to educate and support the masses.
You are my inspiration. This is why I named my awareness products fundraising campaign, Inspired By You. I was so touched by all the heartbreaking stories of pain, isolation, indifference and financial ruin. I was amazed at the strength, determination, friendship and sharing of information so many generously offered.
I was in the midst of yet another cruel, painful bedridden "flare-up" nearly two years ago. I used pillows under my hands so I could text and scroll through Facebook. There I found thousands of others with the same exact symptoms I suffered on and off over the years. How could this be? So many people as sick as I am, yet none of us have validation or medical support or effective definitive treatment?
Unable to leave my home or barely make it to the bathroom at the time, Facebook became my only real interaction with the world. My new friends. Although ill for over thirty years, this became my new world. My new normal.
I have much to say. I have much to share. I have many to thank.
I will falter, I will complain, I will want to give up. I will brush myself off and get back up again...and again. And so will you.
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