#26: Help with health: a story of advanced Lyme disease

Most mornings when I’m on my way to work, I take a few moments in the silence of my car to center myself by reflecting on my priorities, my goals and values for the day.  During these moments, I always remind myself of the importance of taking care of my health.  I often think that without my health, I would have nothing–good health (mental and physical) is at the root of one’s livelihood, one’s ability to enjoy the gifts of life and one’s ability to live a long, productive life. That being said, I try my best to take care of my health, but I realize that not everything is in my complete control.  Despite this realization and in the spirit of optimism, I strongly feel that at least by raising awareness of health-related issues, we can move towards better choices, better care and ultimately, healthier and happier human beings.

A few months ago I received a message from a friend of mine notifying us of her struggle with Advanced Lyme Disease.  I’ve decided to share her message here (with her consent) as a way of raising some awareness of this disease. While I am no expert in this area and realize that there are many different sides to any particular issue, her story is one window into what some people are facing with advanced Lyme. Here is an excerpt of her message:

Dear friends and family-
Just 10 months ago, I was a healthy and active 27 year –old. Then one night, something bit me and my life was forever changed. Since then, I have intermittently suffered a plague of confusing, often seemingly unrelated symptoms ranging from bizarre poison-ivy like itchy rashes to severe rheumatoid arthritis-like joint and muscle pain.

About a month ago, I was finally diagnosed as having advanced Lyme disease.

Lyme is incredibly clever. It wrecks havoc on every system of the body, but it affects every person differently. For me, my symptoms are mostly rheumatic. I often wake up in unbearable pain, unable to walk or move my arms. Moreover, the cartilage and collagen in my knees have been so badly destroyed that they now can’t hold my body weight for more than a couple of minutes at a time. I am currently completely wheelchair-dependent and unable to do many basic tasks for myself like cooking meals or going to the bathroom. While there are still some days when I feel relatively healthy, 99% of my days are currently the opposite. The worst of the worst days feel like death; one of the most slow, painful kinds of deaths you can possibly imagine.

Lyme is also extremely expensive. While Canada and the US recognize and easily treat/cover early stage Lyme, no one is willing to pay for long term/advanced treatment and so it’s on the patient him/herself to pay for themselves.  Over the past 2 months alone, my nearly $7,000 in savings (along with my dreams for moving to the mountains of Colorado) has disappeared on blood tests, ultrasounds, doctor’s visits, knee drainage treatments, medications, pain management techniques and basic dietary needs. What’s more is that treatment – regardless of what kind you choose- is long and tedious, lasting at least a year, if not much longer. Moreover, there are still tens of thousands of dollars that I will be asked to pay in the coming year(s) to deal with my disease as this continues. Best guess estimates hover at about $2000-$2500/month.

As one can imagine, my heart sank and I felt the utmost concern and care for my friend. When I asked her what she felt were some things we could do to help the situation for those dealing with advanced Lyme disease, she suggested the following three things:

  1. Watch the documentary Under Our Skin . She said that “it’s very well done and outlines some (though certainly not all) of the major problems (physical and political) that Lyme sufferers go through (and for the Canadians reading this who are wondering, while this documentary is about the U.S., the situation is the same in Canada)”.
  2. Spread the word about this condition.
  3. Write to your elected official asking them to recognize this disease and cover it.

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