Tag Archives: Excessive daytime sleepiness

Lyme Chat: 3-3-2014

Only 16 more days until spring! I don’t know about everyone else, but spring has been on my mind, all the time lately!

Spring 2013 Spring 2013 (photo 2)

(These lovely photos I took last Spring!)

I decided to move the Lyme Chat to Monday since on Sunday the Oscars were happening!

During last night’s (or morning or afternoon, depending on where you are in the world!) Lyme Chat, we continued to discuss “Finding the perfect doctor (for you)”

(Click here to see part 1)

Interested in learning more about Lyme disease and other tick-borne diseases? Emma, a fellow Lymie, told me about a FREE webinar entitled, “Principles of Tick Management and Tick-Borne Disease” It will TOMORROW, Wednesday, March 5th between 1:00pm – 2:00pm EST! Click here to register and learn more!

 Here are the Lyme Chat questions:

Q1: How is everyone doing? #LymeChat

A1: I am struggling with a hernia & post viral gastroparesis. But I have become addicted to House of Cards! Helps pass the time #LymeChat

Q2: You need a doctor. How do you go about finding one? (Ex. “Google” doctors, Yelp.com, word of mouth, etc.) #LymeChat

A2: When I need a doctor, personally I start with word of mouth, then follow up with at least “Googling” the doctor(s) #LymeChat

Q3: Is your primary care physician someone you ask to recommend a doctor for you? Why or why not? #LymeChat

A3: Going to my PCP isn’t my first choice for a referral. I have a psych NP that is my most trusted doc + word of mouth before PCP #LymeChat

Q4: Do you trust an online rating of a doctor? Why or why not? #LymeChat

A4: It’s def something I read and consider! But also must be a source where they collect info of the person leaving the review #LymeChat

Q5: Would you or have you paid for doctor ratings? Why or why not? #LymeChat

A5: I have not paid for doctor ratings- there is lots of info out there, sometimes it takes a while to find- I won’t anytime soon #LymeChat

I wouldn’t pay to see doctors reviews online, but I would pay for a Top Doctor’s magazine once in a while #LymeChat

Q6: What question(s) do you ask yourself to help figure out if a doctor is a good fit? #LymeChat

A6: One thing I ask myself is, “What makes this doctor or specialist different from all the others out there?” #LymeChat

  I also check out all the doctor’s degrees, certifications, awards, what boards they are on, etc. #LymeChat

Q7: Are there any specific questions you ask your doctor to help decide if they are right for you? #LymeChat

A7: Do you believe in Lyme disease and Chronic Lyme Disease; do you believe in alternative medicine? #LymeChat

How To Choose A Doctor (Consumer Reports)

Choosing a Doctor: Quick tips (HealthFinder.gov)

Can Doctors Be Taught How to Talk to Patients?

Read the entire Lyme Chat here (via Storify)

Rare Disease Day 2014

rdd-hd-banner2

Today is Rare Disease Day

What is a rare disease?

  • A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.
  • 80% of rare diseases have identified genetic origins whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative.
  • 50% of rare diseases touch children.

(Statistics from RareDiseaseDay.org)

While Lyme disease is NOT considered a rare disease, on my journey back to health, I’ve met not only other “Lymies” but those who struggle with many different chronic illnesses, including rare diseases. How many of you have heard of Neuromyelitis Optica (also known as Devic’s disease) or Cyclic Vomiting Syndrome (CVS)? I had never heard of these before I met individuals with them. Hearing their stories gives me hope and strength to push forward as I admire how they can do the same despite the odds.

I personally do suffer from a rare disease called Idiopathic Hypersomnia (IH) (or Primary Hypersomnia), which is believed to be caused by living with Lyme disease and other tick-borne diseases for many years without being diagnosed or properly treated. Of course this is very controversial and not known for sure. I also suffer from other sleep disorders like narcolepsy; narcolepsy is not considered a rare disease but affects about 200,000 Americans, which is close enough to be a rare disease. Whether or not these sleep disorders were caused due to being treated with tick-borne diseases years after initially being infected or for some unknown reason, it is extremely frustrated when so little are known about them. There is more information out there on narcolepsy than Idiopathic Hypersomnia but we don’t know what causes them.

So today, in honor of Rare Disease Day, take the time and learn about a rare disease.

Learn more about the cause too and visit rarediseaseday.org

Lyme Chat: 2-23-14

Happy Monday!

mondays

I am happy to say that I was able to hold the Lyme Chat last night after last weekend I had to cancel it after coming down with the flu! I am also VERY happy to say that I am feeling much better! I’m still not 100% but I am getting closer every day!

Last night, we started to discuss, “Finding the perfect doctor (for you)”

We will continue talking about this topic on the next Lyme Chat, this Sunday, March 2nd (8pm EST/5pm PT on Twitter!)

Here are yesterday’s Questions: (and my responses)

For the first 6 questions, responses were based upon a scale of 1 to 5:

1= Very important, 2= Important, 3= Neutral, 4= Not important, 5= Not important at all

Q1: On a scale of 1 to 5, how important is a doctor’s bedside manner to you?

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“Rookie of the Year” Finalist!

I am SO excited to announce…

I am 1 of 10 finalists up for “Rookie of the Year” in the 3rd Annual WEGO Health Activist Awards!!!

(WegoHealth.com)

(WegoHealth.com)

First, I would like to say congratulations to all nominees and finalists! 

Thank you for all your hard work and dedication to helping others!

I am truly honored that I was even thought of to be nominated, not only for Rookie of the Year, but Best in Show: Twitter AND Health Activist Hero! Now I’m a finalist!?!?

I’m still pinching myself!

Thank you, thank you, thank you to each and every single individual who not only voted for me, but for being an essential part of my support system! Without all of you, I wouldn’t be here. I would have given up my fight a long, long time ago!

As I mention on my WEGO Health Activist Profile, I started Fight Lyme to help educate others by sharing my story, helping prevent the spread of Lyme disease and all tick-borne diseases. Not only did I not want to educate those through my website, social media, as well as going out into my local community, but to help individuals who are fighting Lyme to connect with one another. Helping people, I believe, can be some of the best medicine. Little did I know that they would be the ones who helping me.

I would also like to thank all those who make the WEGO Health network possible, creating an amazing online community to help others, as well as recognizing individuals for their hard work, and organizing the 3rd Annual Health Activist Awards! I know I would have a very hard time selecting finalists because every person nominated, deserved to be. There are so, so many great causes out there!

Thank you again so much again to everyone who nominated and voted for me!

Congratulations and good luck to all finalists!

 

Lyme Chat: 1/19/14

Happy MLK Day

Happy MLK Day

It has been a while since I’ve hosted a Lyme Chat; between my debilitating fatigue and the loss of my cat Willa…I’ve just been trying to take care of my mental health and well-being.

I know I will make it through this hard times because I have such an amazing support system. My Mom, Dad, brother and boyfriend have all been by my side every second, as we all are devastated  losing Willa, who my Dad found abandoned on the streets of New York City and brought her home on my 7th Birthday.

Me and Baby Willa

My veterinarian has been nothing less than incredible, caring for Willa as if she was their own, helping us give her the best 17, almost 18 years of life she could ever have.

My fellow “Lymies” and “Spoonies” have become another family of mine; they are there for me every day; I lost count of how many people have kept me in their thoughts & prayers, offered words of advice, sharing with me that they too know the pain of losing a pet, assuring me that everything WILL be okay, but it won’t be easy- and that’s ok. Many who I’ve grown close to over the past year continue to check in on me, making sure I’m doing okay.

One thing Willa taught me (yes, my pets teach me things!), is that you have to be strong, no matter what. So, for you, Willa, I’m going to be strong.

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