Managing Your Health Care

When you begin treatment for Lyme disease, you need to be an active participant.  You need to find a system to keep yourself and your information organized.  This may be very difficult to do, given the way that you feel and the mental fog that you have.  Perhaps you can find someone to help you with this.  It's very important.

When I became ill, and before I knew what was wrong with me, I had a small coil notebook that I wrote everything down in - phone calls I'd made, things I had found on the internet, doctors I had contacted, symptoms I had, etc.  I kept my loose papers in a file folder, things such as test results.  However, over time, I outgrew this method!  I had too many things to file, and I really needed a better system.

So off to Staples I went, and I bought a big binder and some dividers.

My dividers have the following headings, but you can tailor yours however you like:  History, Lab Work, Doctors' Reports, My Blog, Managing Lyme Disease, Dr. L., Miscellaneous.

The binder has filled up!  I may soon need a bigger one. 

Before you visit your LLMD for the first time, it will be very important for you to have all of your previous doctors' reports, test results, etc. available for him/her.  It is also recommended that you write out a history of your illness:  when did your symptoms start, what symptoms do you have, what doctors have you seen and when, etc.  Write it out like you were just telling the story to someone, then afterwards, you (or someone else) can summarize it in point form.

During your treatment, it will be very important for you to keep track of your symptoms, so that you can see the progress you are making, and so you can give your LLMD an accurate report when you see him/her each time.  It also helps you to figure out if you might be having any herxheimer reactions. 

Some people use a symptoms checklist, which is a great idea.  You can write out all of your symptoms in chart form, and rate them daily or weekly on a scale of 1 to 10.  You can find sample checklists by doing an internet search or checking out other Lyme blogs.

I chose to make jot notes on a calendar.  That was a better system for me.

Before my appointments with my LLMD, he asks me to write a paragraph about how I was feeling the past 6 weeks.  I can then just look back at my calendar and summarize what I had jotted down.  He also has me fill out a symptom checklist at his office each time.

Look at last month's jot notes:

That's right!  There are NONE!  That's because I'm feeling quite good.  I really don't have much to write about, except for tiredness and a few minor sporadic symptoms. 

I hope this information will be a help to you in learning to manage your health care. 

A story with a happy ending

One thing people love is stories, especially happy stories with happy endings.  They lift us up and give us hope.  And I'm not sure how many of us would be able to get up in the morning, and carry on, without some hope in our hearts.

Lyme disease CAN be managed!  Whether or not it can be truly 'beaten' remains to be seen and to be researched.  But it IS possible to recover and live a normal life again.  Sometimes, it takes years, but it CAN happen.

Do not give up hope!

Here is a great article that I read on LymeDisease.org.  So encouraging.  So uplifting.  I love how the 14 year old girl, and the 20 year old woman (both the same person!) are juxtaposed.  So well done.  So effective. 

TOUCHED BY LYME: 20-year-old’s advice to her 14-year-old self: “You gotta have hope” 1st May 2012

The young woman in the photograph is doing a cartwheel—something she couldn’t do six years ago, when she was wheelchair-bound from Lyme disease. At that time, her body was wracked with pain, 24-7. She had a cascade of other symptoms as well, which made it impossible to go to school, to carry on with normal daily activities, and often, even to get out of bed. Life seemed bleak indeed.

Yet, out of her pain and misery, Rachel created a gift that has just recently resurfaced. In March 2006, she spoke to a video camera about how she was feeling and her frustrations with doctors who refused to recognize that Lyme disease even exists in California. It is a visual record of a young teenager trying to make sense of her desperate situation. Her demeanor seems calm, but if you study it closely, you can see the fear and vulnerability trembling below the surface.

But here’s the twist. Last weekend, after she re-discovered her earlier footage, Rachel recorded her present, healthy, walking self, responding to the same questions her younger self had answered. She edited the old and new together, cutting back and forth between 2006 Rachel and 2012 Rachel.

Together, the two Rachels have valuable wisdom to impart. Take a look:

Rachel currently attends college in northern California.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. Contact her at dleland@lymedisease.org.

Interview with Jim Wilson of CanLyme on the CBC

The CBC strikes again - in a good way!  If you have followed my blog, you may know that CBC radio is close to my heart because it was an interview I heard on their station in 2010 that helped me to self-diagnose my Lyme disease.  The CBC continues to shine a light on Lyme.  Today, the CBC aired a 1 hour segment on Lyme disease with guest Jim Wilson, founder of the Canadian Lyme Foundation, or CanLyme.  They also took numerous calls from Ontarians afflicted by Lyme disease.  The majority of those people, like myself, have had to travel to the U.S. for treatment.  Jim Wilson, a former Lyme sufferer, is so knowledgeable, and a very calm, rational speaker.  His foundation has helped to provide guidance to Elizabeth May's team in preparing the bill.  The segment also featured a short interview with an infectious disease specialist from Toronto who pretty much toed the old party line - the one we're trying so desperately to change!!!

Click here to listen to the program on CBC's Ontario Today.

Click here to visit Jim Wilson's excellent website, CanLyme.

U.S. House subcommittee discusses Lyme Disease

To read some excellent information presented to a U.S. House subcommittee discussing the global impact of Lyme disease, click here.  The information is so intelligently written.  I truly hope it will have an impact on those who make up the subcommittee, and that changes will be made as a result.  It is so exciting and a great relief to see the issue of Lyme disease being discussed out in the open, and for some members of the government to be 'on board' with us.

I have also found a general overview of the presentation.  Much easier to read!  Click here.