Friday, May 29, 2009

New Adventures: Online Workshops!

As some of you may know, I am lucky enough to have a grant this year which funds some of my workshops and talks.

Next month I am trying something new: online seminars.

I have decided to make my my first webinar available only to CF patients, families and friends. Due to cross infection issues, CF folks can not really come together for seminars anymore and this is my solution to that unfortunate reality.

I have provided the webinar information below. If you would like to pass this info along to other people in the CF Community, I would greatly appreciate it.

Thank you!!!

Project Compassion Presents: "Finding Your Voice in the Healthcare Maze" facilitated by CF patient and two-time double lung transplant recipient, Tiffany Christensen.

In each session, the primary focus will be advocating for yourself or someone you love in a healthcare setting. Secondary topics include advance care planning and the myths and truths of organ/tissue donation.
The webinars will be 3 Saturdays in a row: June 13th, 20th and 27th. They will take place at 3:00pm EST.


For CF patients, friends and families within North Carolina, there is no enrollment fee. This webinar is being underwritten by a North Carolina grant and there is no cost.

For CF patients, friends and families within the USA but outside of North Carolina or for those in Canada, the cost is minimal.

To attend all three sessions: $25.00

To attend two of the three sessions: $20.00

To attend one of the three sessions: $10.00

To register visit: and click on "Browse Upcoming Events" and click "register now" under each session you wish to attend.

You may also register by sending an email directly to Tiffany at Be sure to include contact information and the sessions you wish to attend.

To pay for registration (only for those outside of North Carolina), please visit:

and click on "Register for the CF Finding Your VoiceWebinar."

To learn more about Tiffany, visit

Questions may be sent directly to Tiffany at

Thursday, May 7, 2009

Quick Update and another Top 10

Hello Dear Blog Reading Friends,

Once again this blog has sat silent for a long time while my life took on a hectic pace. I always feel so guilty for not writing and I miss the opportunities to share the things I'm thinking about. I write notes down on scraps of paper to revisit later but it just isn't the same as when the thought is fresh in my head!

I'm not complaining. Things have been busy because my work continues to gain momentum. Honestly, when I take the time to think about that, I find it hard to believe. I feel so lucky.

I want to tell you about the highlights of my travels but I have a meeting to prepare for in just a few minutes. Hopefully, I will have time to write more this weekend.

In the meantime, a facebook friend wanted to see the list of my Top 10 Tips and Tricks for Navigating the Healthcare Maze. You can find that below....

That reminds me to mention, I do a lot of my connecting these days on facebook with pictures, status updates and checking in on other people's comings and goings. If we aren't friends on facebook yet, look me up!

Until next blog, BIG GRATITUDE to you.

Tiffany's Top 10 Tips and Tricks for Navigating the Healthcare Maze

1. Knowledge, Awareness and Boundaries are the first three keys to effective patient advocacy. Gone are the days of relaxing and letting the doctor call all the shots— Be a humble, polite, persistent Squeaky Wheel!

2. Here’s the greatest irony of illness: when you are at your worst is exactly the time when you need to be at your best! If you aren’t up for self-advocacy, bring some one who can do it for you.

3. Being sick is difficult. Be kind to yourself and find ways to process your emotional needs while catering to your physical needs. Healing can happen no matter what the physical outcome.

4. There is power in the Written Word. Use signs whenever you can. Always take notes when getting medical instruction. Keep a list of your medications so you don’t have to repeat yourself.

5. Know the medical hierarchy! If you have a problem with a caregiver, it pays to know where to find their boss!

6. Seek out other patients who have traveled a similar road, they may help you avoid potholes.

7. When you seek out other patients who have traveled similar roads—be careful who you listen to—they may be a pothole.

8. If you go to a surgeon, they will want to do surgery. If you go to a medical doctor, they will want to give you medicine. If you go to an acupuncturist, they will want to give you acupuncture. What do you want to do?

9. Always ask direct questions. Never assume that your doctors are telling you “the whole truth and nothing but the truth” unless you have looked them in the eye and specifically asked what you want to know.

10. Illness is difficult but, if you look hard enough, you might find it also offers opportunities for growth, gratitude and joy.