Tag Archives: narcolepsy

Enforcing P.L. 18A 35-5.1 & 18A 35-5.3

In the state of New Jersey, the Lyme Disease Association (LDA) successfully passed P.L. 18A 35-5.1 & P.L. 18A 35-5.3 in 1992.

P.L. 18A 35-5.1 (1992)
The Commissioner of Education, in consultation with the Commissioner of Health, shall develop curriculum guidelines for the teaching of information on the prevention of Lyme disease within the public school health curriculum. The guidelines shall emphasize disease prevention and sensitivity for victims of the disease. The Commissioner of Education shall periodically review and update the guidelines to insure that the curriculum reflects the most current information available.

P.L. 18A 35-5.3 (1992)
The Commissioner of Education, in consultation with the Commissioner of Health, shall also provide curriculum guides for the training of all teachers who instruct students with Lyme which emphasizes the special needs and problems of students with the disease, in order to provide information about how best to teach those students. Each school district shall annually provide training to all teachers who instruct students with Lyme disease, based upon the guidelines.

State Laws/Policies/Reg – Prior to 2008Lyme Disease Association, Inc

I was first diagnosed with Lyme disease while in elementary school. After being absent for almost two weeks, I came back on crutches after waking up with a swollen knee- which is how I found out I had Lyme disease.

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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

“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!

 

Scars

“It has been said, ‘time heals all wounds.’ I do not agree. The wounds remain. In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens. But it is never gone.” – Rose Kennedy

Scars from 2 PICC lines and a midline
Scars from 2 PICC lines & midline
I’ll forever have these three scars on my arms

PICC Line vs. Midline
PICC Line vs. Midline

Two are from PICC lines (Peripherally Inserted Central Catheter) and the other, a midline.

Someone recently asked me what was on my arm, pointing to one of the scars. I casually responded, but today, I sat and reflected on not just the scars, but how they got there.

It is sad that sometimes I feel the need to justify being sick to others; hearing, “But You Don’t Look Sick…” is never something I like to hear, but at the same time, it’s nice to know I don’t look as horrible as I feel.

All that’s changed over the past 2 years, is that I no longer have an IV in my arm. When I had it, I “looked sick,” and didn’t need to explain to people that I didn’t feel well. Now that I don’t have it, I struggle with “the need” to prove to others I am sick; I don’t need to justify that I suffer from debilitating fatigue caused by Idiopathic Hypersomnia, a rare sleep disorder, as well as others like, Chronic Fatigue Syndrome, Excessive Daytime Sleepiness & narcolepsy (without cataplexy).

“In a perverse way, I was glad for the stitches, glad it would show, that there would be scars. What was the point in just being hurt on the inside? It should bloody well show.” ― Janet Fitch, White Oleander

Every day I continue to learn how to battle my invisible illnesses and let go of the fact that, people will believe what they want to believe; I don’t owe anyone an explanation.

When someone asks about my scars, I tell them I received antibiotics but then continue ask if they are aware of ticks and tick-borne diseases.

What I don’t say, is that the scars on my arms remind me, that I am brave, relentless and that I am a much stronger person than I was a few years ago; I’m stronger than I was yesterday.

They never have to know that, but I do.

“30 Things About My Invisible Illness You May Not Know”

The month of September is Invisible Illness Awareness Month and one week out of the month is Invisible Illness Awareness Week! Yes, I am aware it is now November, but I wanted to share this with you! We can spread awareness anytime of the year! Due to my invisible illnesses, I was not able to write this post, until now!

I learned about answering “30 Things About My Invisible Illness You May Not Know” through Christine Miserandino, the founder of But You Don’t Look Sick and The Spoon Theory!

Here are 30 things you may not know about MY Invisible Illness:

1. The illness I live with is: Lyme disease (and many more)

2. I was diagnosed with it in the year: 2002 (when I was 12) & was re-infected around 2008 (when I was 18 years old)

3. But I had symptoms since: Age 9

4. The biggest adjustment I’ve had to make is: Accepting and living with all the other illnesses/conditions I’ve developed from living with Lyme disease- worst of all my sleep disorders

5. Most people assume: You take antibiotics for a month and you’re fine. No one considers what happens when you have lived years with an infection in your body without it being treated- and that doesn’t mean more antibiotics will get rid of it either

6. The hardest part about mornings are: Staying awake/getting out of bed

7. My favorite medical TV show is: I don’t really have one, but I’d have to say House- because he can fix everything; Law and Order SVU is one of my favorite shows; even though it’s not considered a medical show, I love studying abnormal psychology, which is a big part of the show!

8. A gadget I couldn’t live without is: My nutribullet! I’m never hungry (as a side-effect of the medicine I take to stay awake) so breakfast, lunch and snacks throughout the day are usually in liquid form! Also my HEPA filter!!

9. The hardest part about nights are: Falling asleep, staying asleep; but more the fact that I’m not a normal 24-year old. I used to go out on weekends, now if I make it out to run errands is an accomplishment.

10. Each day I take: I’ve been able to cut down and only be on 4 prescriptions meds (at one point I was taking about 15), I take a lot of herbs/supplements/vitamins

11. Regarding alternative treatments I: I am a huge believer of alternative medicine, when it’s done right. I’ve had more positive outcomes from acupuncture, homeopathy, going to an herbalist/taking herbs, vitamins, supplements- but I like a combination of both worlds

12. If I had to choose between an invisible illness or visible I would choose: I’m not sure. I have both, both come with their own struggles

13. Regarding working and career: I’m glad it’s more acceptable in society to be 24 and living at home with mom & dad. I’m not able to work or go back to school…yet!

14. People would be surprised to know: I’m in constant pain 24/7. I think I hide it pretty well. Also, I do not have a circadian rhythm

15. The hardest thing to accept about my new reality has been: eating healthy/following a strict diet! I haven’t had the best eating habits, but now I have to follow a strict diet; no sugar (maybe 1-2 servings of fruit a day), low carbs, high protein, no white flour (whole wheat, whole grains are okay); It’s complicated and confusing! Also not comparing myself to others- someone may be able to get up early, work all day, then come home, have energy to go out, go to the gym, or whatever, sleep for only a couple hours and be ready to do it all again the next day- I will never be that person!

16. Something I never thought I could do with my illness that I did was: Graduate college

17. The commercials about my illness: I don’t see any on TV (living in NY/NJ) but when I visit my boyfriend in Massachusetts, I sometimes see commercials there- but only advertisements about pest control for your home, not about Lyme disease.

18. Something I really miss doing since I was diagnosed is: Every day activities; being able to do them every day

19. It was really hard to have to give up: my independence

20. A new hobby I have taken up since my diagnosis is: social media; connecting with others who have Lyme disease and educating the public!

21. If I could have one day of feeling normal again I would: I would spend time catching up with family & friends

22. My illness has taught me: So, so, so many things! But overall, it’s taught me how to be a stronger person

23. Want to know a secret? One thing people say that gets under my skin is: “Oh you’re tired? You just need to get up, walk around, get some fresh air, drink some coffee, etc.” It doesn’t work like that and yes I’ve tried all those things! I’ve now been trying to manage my fatigue/sleep disorders for 5+ years!

24. But I love it when people: Understand what i’m going through- or even if they don’t, they try to understand, plus are honest that they don’t. It’s great when people listen and of course, when they are supportive!

25. My favorite motto, scripture, quote that gets me through tough times is: I have so many and always love finding more because they are so helpful to me! Some of my favorites are, “The journey of 1,000 miles, begins with a single step” and…

The true miracle quote

26. When someone is diagnosed I’d like to tell them: It’s a long road. You can’t look ahead to see how far you have left to go because that will only exhaust you. Focus on today, but I also try to look back and see just how far i’ve gotten; also that they have overcome one of the hardest parts, being diagnosed/figured out what was wrong!

27. Something that has surprised me about living with an illness is: It’s possible to live with a chronic/invisible illness

28. The nicest thing someone did for me when I wasn’t feeling well was: Sent me a card to let me know they were thinking of me; also, just listening and learning more about my invisible illness is so nice!

29. I’m involved with Invisible Illness Week because: My invisible illness, Lyme disease, is a growing, silent epidemic.

30. The fact that you read this list makes me feel: Happy!

Plato quote

Apple picture