Lyme Resources - Help is out there, don't give up

I was reminded today of a conversation I had with a recovering Lyme patient right after my diagnosis. I admired her for her tenacity and willingness to share her info. She was also spending her time being an activist for Lyme and advocate for patients. I was so low on energy at the time, I couldn't imagine myself doing that. I told a friend at the time that I just wanted to heal and move on.


What I have come to realize is that as you work through this disease you start to meet people who have traveled a rough road, like yours but different as well. Some are finding success, others not so much. As you heal, you don't want to leave them behind, nor do you want others to suffer. It is very difficult to just heal and move on. Someone saved me because they didn't just heal and move on.

Then comes a helpless feeling. The whole world is starting to talk about Lyme and nothing is changing. Or is it? It is impossible to know what could be or is happening behind the scenes. So, the only option is to keep trying.

I started this blog originally to share my treatment updates with family and friends, while I was away. I knew it would be a personal one and wanted to keep it so. I seem to be opening that circle wider and wider, with the chance that it may help others. The least I can do is share my vulnerable, personal experience if it helps to bring awareness to the disease, the severity, and the challenges. So I will.

Today I was given the opportunity to speak with Kristy and Leanne on CFRA 580, the Morning Rush. The media has been helpful to the Lyme crisis and it seems to be the best tool we have right now. I thank them for all they are doing to bring awareness to the disease.



You should be able to listen online at:
http://www.cfra.com/TheMorningRush.aspx

Preamble
2016-08-04 Hour 3 of the Morning Rush from August 4, 2016.
31:00 mins

Interview
2016-08-04 Hour 4 of the Morning Rush from August 4, 2016.
11:50 mins

I realized I shared in the interview the best piece of medical advice I received. I was told to keep a diary of my symptoms when we had run out of options. I didnt like the idea at the time because I felt it made me focus on what was wrong and would fill me with reminders of bad things that were happening. I thought the worry that I was becoming a hypochondriac would be fed with such a list.

What the diary did for me at the end was gave me a snapshot of how bad things really were. There were so many more things happening that I ignored or forgot. But I was also told it helps give the doctors a much better picture of the situation. You are more certain of timelines, severity and frequency, all of which help a doctor diagnose. I realized that I was not focussing on the bad, I was developing the tools I needed to move on. I was helping myself the only way I could, hence helping the medical system help me...regardless of whether it was in the US or Canada.

And with that, I also share this advice:  Make sure you are doing all you can to help yourself if you are feeling unwell. They key things: healthy, healthy, healthy eating, daily movement, tons of rest, stress reduction and seeking help everywhere you can. If you can't depend on yourself to help, how can you expect it of others?   Easier said than done I know, especially when you are already feeling so lousy. But it is the most important piece of the puzzle. It determines how badly you want to heal. 

Some key contacts and resources, many of these were shared with me just before I was diagnosed and helped me get there.  So far through my journey, they still prove to be the most reliable.

Canlyme.org - Canadian online resource

lymedisease.org - US online resource

IGeneX inc. www.igenex.com - US Lyme testing laboratory - Can be ordered by Canadian doctors and Naturopaths.

Dr. Maureen McShane - highly informed medical professional in Plattsburgh, NY and Lyme patient.  You can just google her and find out a lot

Hampton Wellness Centre - Dr. Marie Matheson - Naturopathic Doctor in Ottawa specializing In Lyme Disease

The FAR Clinic, Bountiful Utah - Research based alternative treatment, led by Dr. Brett Earl.  Their Facebook page has a wealth of info too.



3 comments:

  1. My husband came across the interview and we listened to together later on the podcast. While his story is not nearly as long or complicated as yours, it was so interesting to hear and read about the similarities. Thanks for sharing so much information.

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  2. And of course, we hope your progress continues as best as it can.

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  3. Thanks Valerie, I appreciate the acknowledgement. Glad it was of some value. Good luck to both of you :-)

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