Posts Tagged ‘lupus’

An Awful Christmas Present

Tuesday, December 31st, 2013

Earlier this month, I was having a conversation with a woman who has lupus. The reason I’m writing about it is because I was greatly affected by one of the things she said.

Linda, who is a cable TV installer, told me about a customer of hers who has some very difficult health challenges. And then she shared something the woman had said to her, which was this:  “The best Christmas present I could get would be to not wake up.”

I don’t know what illnesses she has, but I have to think she has probably been in a lot of pain and that she has struggled with her illnesses for a long time. And I know, from both my own experience with a chronic illness and from working with 100’s of people with chronic illnesses for over 10 years, how hopeless a person can feel and how impossible a better life can seem.

But I also know, from what my clients have shared about their lives, from books and posts I’ve read, and from my own experiences, that miracles can—and do—happen. And while I don’t know if they will happen, for me or for anyone else, I have learned what we can do to make it much more likely that they will.

First, we can look for all the things we have to be grateful for, including food to eat, a roof over our heads, friends and family and the good times we’ve had and the special moments and love we’ve shared, the education we received that makes it possible for us to read books, blogs, magazines, etc., our organs that are working fine (and everyone who is alive has some) – the list goes on and on.

And second, we can have empathy and compassion for the parts of ourselves (remember, we all are made up of many parts) that are struggling and are in emotional or physical pain. And we can let the organs and the parts of our bodies that aren’t well know we appreciate them for doing the best they can, and then send them loving compassion.

I sent Linda an email letting her know that I would be glad to give her customer a no cost consultation. I hope she takes me up on my offer. I know it’s after Christmas, but if she does the things I’ve described here, I have a strong sense she will find that life, even with serious health challenges, is a gift, and she will want to wake up tomorrow and the next day and the next, etc., and enjoy that gift.

Highly recommended book: Cure Unknown: Inside the Lyme Epidemic

Tuesday, November 3rd, 2009

I send out bi-weekly tips for living well with a chronic illness to people who sign up for my free report, and for one of my October tips I wrote about a former client who had chronic fatigue syndrome. A woman wrote back to ask me to let my former client know about the book Cure Unknown: Inside the Lyme Epidemic by Pamela Weintraub. I did that and I also got the book myself, and have just finished reading it.

In the book, the author recounts her family’s harrowing ordeal with Lyme disease that began after their 1993 move from New York City to a nice house next to the woods about 50 miles away.

I highly recommend this book, especially if you have or know someone who has Lyme disease, chronic fatigue syndrome, fibromyalgia, lupus, Parkinson’s disease, or amyotrophic lateral sclerosis (Lou Gehrig’s disease). The author makes a very convincing case that Lyme and other tick-born diseases are often misdiagnosed as one of those other illnesses.

The following excerpt was especially eye-opening for me: “Even the campus green at Brown University, surrounded by city streets near downtown Providence, had Lyme ticks: One friend sitting on the green had pulled a tick from her leg only to find, a short time later, an erythema migrans* in that very spot. She later tested positive for Lyme disease.”

I have a friend who was diagnosed with lupus not long after she attended Brown about 25 years ago, so I couldn’t help but wonder when I read those two sentences if my friend’s lupus and other health problems are actually due to Lyme disease. I sent my friend an email with a brief summary of the book. If she decides to be tested for Lyme, I will write about her diagnosis, treatments, and results in future posts.

As the author describes the devastating symptoms, the progress, and the setbacks she, her husband, and their two sons experienced from Lyme and other tick-born illnesses, she makes it strikingly clear how serious and complex these diseases are. But what made the ordeal many times worse for them and countless others was the turf wars that continue to rage within the medical community. They pitted doctor against doctor and doctors against government agencies, and resulted in some doctors whom patients felt were the only ones treating their illness effectively either stopping treating Lyme patients or risking losing their medical licenses.

The author was able to cure her Lyme disease, and her husband eventually recovered and stayed relatively well as long as he continued to take his medication. At the time Weintraub completed the book, one of her sons had recovered, been re-infected, and had recovered again, and the other was finally regaining his health after being gravely ill. She had much more to say, but I don’t want to spoil the ending for you.

* Erythema migrans is the name given to the rash, frequently target like, that often appears after a person is bitten by an infected tick.

I don’t believe in the word “incurable”

Tuesday, September 22nd, 2009

I don’t believe in the word incurable. I’ve even blacked it out of my dictionary. I want those of us with chronic illnesses to stop using it – and I especially want doctors to stop using it.

A few years ago, I read an article in an ezine about chronic illnesses in which a woman with lupus told how she asked her doctor if her condition would ever get better. She wrote that his reply, given with a sad look, was, “No I’m sorry, it won’t.” I got upset when I read that. I wanted to chastise both of them: the doctor for saying that, and the woman for believing him.

What doctors actually mean when they say an illness is incurable is that they haven’t found a cure for it – yet. But medical science is continually making advances which result in new, better, and more effective treatments for many diseases (I’m a beneficiary of medical science’s advances because infliximab, a new drug that was approved in the late 1990s, gave me my life back).

A doctor who says that a disease is incurable or that the patient’s symptoms will never get better is completely ignoring the very real possibility of a medical breakthrough. Also, although most doctors are reluctant to admit it, many of them have seen or know of one or more cases where patient’s symptoms got better or completely disappeared for reasons they couldn’t explain.

So like I said, I don’t believe in the word incurable. Even when my illness was at its worst, and I was so weak that I passed out from the exertion of taking a shower, I didn’t give up–although there were definitely times when I felt like doing so. Instead I did lots of research, and vowed that I would keep investigating and trying different standard and alternative treatments until I regained my health, no matter how long it took.

I’ll close by saying there are always ways you can improve your health and your life when you have a chronic illness. I wish you well on your journey to live your best possible life.