Happy New Year 2019!
Was 2018 everything you hoped it would be, or wood you rather leave it in the history books? What sort of plans do you have for 2019? What are your goals? If you haven't thought about what you'd like to accomplish this year, take a few moments to reflect and be creative.
Wishing you all health and happiness in the coming year.
Warmly, Hilary
Monday, January 7, 2019
Monday, July 2, 2018
Has it really been two years?! I truly have not meant to have abandoned my blog, but wow, last post was over two years ago! Time is flying by for me at an alarmingly high rate of speed. Returning to work full time definitely makes the time go by much faster. So much has changed and yet many things stay the same.
I am still med free and loving it. My secret weapon is essential oils, and a couple years ago I had to delete all of my oil posts due to some FDA guideline requests to the company to whom I'm a wellness advocate. Apparently now, the guidelines have loosened up a bit and I look forward to writing much more about oils.
Other things that I continue to strive for are clean eating and exercise. This has been a challenge this past school year. It is something I am working on getting back on track with amazing protein and customized vitamins/supplements from ID Life.
My passion for integrative healthcare has prompted me to return to school. I was accepted to a graduate university to become a Family Nurse Practitioner. My first class wraps up this week, and let me tell you how much my learning style has changed since I graduated nursing school 13 years ago! I've had to be patient with myself, and push myself to retrain my brain to think scholarly again. but I know it will be so worth it!
Let me know what topics you would like to cover in future blog posts!
Other ways to connect: Instagram @organicdollface
Facebook page- Narcolepsy Naturally- Wellness RN
In health- Hilary
I am still med free and loving it. My secret weapon is essential oils, and a couple years ago I had to delete all of my oil posts due to some FDA guideline requests to the company to whom I'm a wellness advocate. Apparently now, the guidelines have loosened up a bit and I look forward to writing much more about oils.
Other things that I continue to strive for are clean eating and exercise. This has been a challenge this past school year. It is something I am working on getting back on track with amazing protein and customized vitamins/supplements from ID Life.
My passion for integrative healthcare has prompted me to return to school. I was accepted to a graduate university to become a Family Nurse Practitioner. My first class wraps up this week, and let me tell you how much my learning style has changed since I graduated nursing school 13 years ago! I've had to be patient with myself, and push myself to retrain my brain to think scholarly again. but I know it will be so worth it!
Let me know what topics you would like to cover in future blog posts!
Other ways to connect: Instagram @organicdollface
Facebook page- Narcolepsy Naturally- Wellness RN
In health- Hilary
Tuesday, May 17, 2016
Hello Again
Where has the time gone, and where have I been?! This narcoleptic nurse got herself a full time (32+ hours per week) job. Yes I said full time. Just two years ago, I would never have imagined this.
My diagnosis was 4 years ago, simultaneously leading to my resignation as a NICU nurse. It took 3-4 months before my body began to normalize and not be in a zombie state. I missed my nursing career terribly, but was blessed to be a stay at home mom and homeschool my littles for two years. In Fall of 2014 I started back as a nurse one day a week. This is a PWN dream schedule, lol. Then in Fall of 2015 a full time position became available and I accepted it. I knew it would be a challenge and I pray every day for enough energy to sustain me through my shift. My choice to return full time was because I'm helping my husband reach his dreams of being an RN also, and lessening the burden a bit for him as he finishes the last two years of his Bachelors degree. It's working out so far!!!
It's amazing what you can push yourself to do when you have faith. My God is an awesome God- my family is so blessed and I'm eternally grateful.
Health and blessings- Hilary
Wednesday, January 6, 2016
Happy New Year 2016!
So, it is a new year which means that it's time for brand new opportunities and fresh starts. It's a time for reflection and resolutions, a time for improvement and hope.
The year 2015 may or may not have been a perfect year for you. Each day brings new challenges and trials, as well as new blessings and solutions. Be thankful for each new day.
Welcome life's ongoing twists and turns, sometimes the unexpected is just what you needed. God's plan is always better than our own, even when we think we have it all figured out...
So here's to a more positively happy year, and may all of your dreams come true- Hilary
Thursday, February 26, 2015
5 Easy and Affordable Health Swaps
There are millions of different ways to make your life more healthy. Depending of course, on how "unhealthy" your lifestyle is, making small consistent changes can have a huge impact on your overall health.
1) Swap your standard table salt for Himalayan pink salt or sea salt.
2) Swap margarine and other fake spreads for real butter.
3) Swap vegetable oils including canola and safflower for heart healthy oils such as coconut, avacado and olive oil.
4) Swap artificial "fake" sweeteners for honey, coconut sugar or organic turbinado (raw) sugar.
5) Swap sugary soda and energy drinks for fruit infused water.
Remember small consistent healthy swaps, lead to permanent healthy lifestyle changes! Blessings of health- Hilary
Thursday, December 25, 2014
Merry Christmas 2014
Merry Christmas!
As 2014 draws to a close, I would like to wish my fellow PWN's blessings of health for the upcoming New Year. Let's not forget to be grateful even when times are tough. Be kind and keep your heads held high!
God Bless- Hilary
Photo courtesy of www.crosscards.com
Thursday, August 14, 2014
Cataplexy Triggers
Lately I've been contemplating the situations and emotions that trigger my cataplexy. I have seen this topic discussed in other forums and support groups, so I know we are all curious about what other PWN experience. So here's my top 5 triggers- some of you may have more, some may have less. Feel free to comment!
1) Laughter- not every time I laugh, usually when something strikes me funny unexpectedly, can be brought on by funny movies, stand up comedians, and by family members (especially my dad)
2) Anger- usually when disciplining/scolding my kids, occasionally occurs when I'm faced with confrontation
3) Embarrassment- when I am embarrassed for someone else. This one had puzzled me since my late teens (prior to diagnosis). I always wondered why I got a strange feeling when I felt embarrassment for someone else that had said or did something to embarrass themselves. At the time, I could only describe it as feeling faint to my doctors. Now I know it has a name, cataplexy.
4) Adorableness- seeing something that's simply too cute for words. A baby just being a baby and being adorable can trigger mild to moderate cataplexy, simply by wrinkling their chubby face just right.
5) Being Snarky- sarcasm at its finest. I often make sarcastic remarks and comments to be funny, but 9 times out of 10, cataplexy weakens my mouth to the point of cutting short my comments or causing me to pause to regain muscle tone.
I am fortunate to not have to deal with full body attacks on a daily basis, and have never had a dangerous fall. I am thankful that I get a bit of a warning as the strength leaves my body, to prepare myself for a safe position. Although frustrating most of the time, and a little hard to explain to others, I still find cataplexy a fascinating phenomenon. I will never let cataplexy keep me from laughing!
Cheers to muscle tone- Hilary
1) Laughter- not every time I laugh, usually when something strikes me funny unexpectedly, can be brought on by funny movies, stand up comedians, and by family members (especially my dad)
2) Anger- usually when disciplining/scolding my kids, occasionally occurs when I'm faced with confrontation
3) Embarrassment- when I am embarrassed for someone else. This one had puzzled me since my late teens (prior to diagnosis). I always wondered why I got a strange feeling when I felt embarrassment for someone else that had said or did something to embarrass themselves. At the time, I could only describe it as feeling faint to my doctors. Now I know it has a name, cataplexy.
4) Adorableness- seeing something that's simply too cute for words. A baby just being a baby and being adorable can trigger mild to moderate cataplexy, simply by wrinkling their chubby face just right.
5) Being Snarky- sarcasm at its finest. I often make sarcastic remarks and comments to be funny, but 9 times out of 10, cataplexy weakens my mouth to the point of cutting short my comments or causing me to pause to regain muscle tone.
I am fortunate to not have to deal with full body attacks on a daily basis, and have never had a dangerous fall. I am thankful that I get a bit of a warning as the strength leaves my body, to prepare myself for a safe position. Although frustrating most of the time, and a little hard to explain to others, I still find cataplexy a fascinating phenomenon. I will never let cataplexy keep me from laughing!
Cheers to muscle tone- Hilary
Monday, May 26, 2014
Memorial Day 2014
To all those who have served America and given the most, thank you for our freedom. May God grant Serenity and Peace to the families and loved ones left behind.
*image from crosscards.com
Friday, April 11, 2014
Narcoleptics Can Homeschool Too!
I never had the desire or intention to homeschool my kids. My big sister homeschooled her kids K-12 and I thought it was amazing but I just didn't see myself as the homeschooling type. To be honest, I didn't want it to be my fault if my children couldn't read. So my oldest two started their early years at a private Christian school, it was wonderful. But after a few years I could not afford it any longer so they went to public school. Fast forward several years, in comes Common Core. Before I even knew what Common Core was, I could see the change in my kids grades as well as the way they were being taught and graded. Finally I put my foot down after my sophomore had a horrible year grade-wise. Online school was implemented in my house for my sophomore just as my twins were entering kindergarten. We chose to enroll them in a charter school nearby after almost deciding to homeschool them.
Needless to say after the first quarter, and after several less than satisfactory issues at the charter school, I was homeschooling my kindergartners. I had never before felt compelled to homeschool, but prayer helped me acknowledge and accept this new chapter in my life. I could not quiet the gentle but firm prodding of the Holy Spirit. I knew deep down that a Christian curriculum is what my children needed. Obviously my husband had his doubts about me being able to actually stick with it and not fall asleep during teaching time. So far I have proved him wrong ;)
With all the endless resources available to us via the internet and social media, homeschooling today is easier than it has ever been. I chose to base our curriculum on A Beka Books www.abeka.com . I had used it as a student in junior high and high school and knew it was a challenging and upright program. I have also pieced together some parts of their learning with buying fun learning aids from Lakeshore Learning and using some websites for free printable worksheets and activity ideas. My favorite website/blog by far is www.confessionsofahomeschooler.com. It is a Christian based site and covers all topics, gives craft ideas, hosts awesome giveaways, and gives general advice about what you will need to start your homeschool classroom.
Some of the perks of homeschooling include: flexibility, different learning styles, control over your child's education, merging a variety of curriculum, more free time for music and sports, individualized teaching and interaction, Bible time, and watching your child blossom right before your eyes.
Special challenges of homeschooling that PWN face: feeling less than peppy in the morning, getting your child's day started before the overwhelming need for a mid morning nap sneaks up, getting distracted with laundry or cleaning while your kids are patiently waiting for you at their school desk, falling asleep mid lesson, organizational/structure challenges and the overall feeling of fatigue that taunts at you to just have a "play day" instead of school.
I'm not going to lie, I have fallen asleep right in front of my kiddos, mid-lesson! They know mommy has narcolepsy so they say, "Mommy, mommy, you're falling asleep!". They giggle, they're so sweet. Sometimes, we break for "recess" and mom gets a rest while they color or play. If we haven't finished our lessons, we simply pick up when I muster up a bit more energy. The beauty of Kindergarten is that it only takes about 1-2 hours. It's very manageable and flexible. As for my older two who are both doing online public high school, they are more self driven and I don't have to hold their hand through everything, we use Connections Academy. It has been a great program for us in Nevada. Even though it yields to Common Core standards, at least I am present to correct or discuss things if necessary.
So if you have ever contemplated homeschooling your kids, don't let your narcolepsy hold you back! My biggest tip, set a wake up time and do normal morning activities, (breakfast and getting dressed) for both you and the kiddos. Have a regular school "start time", its easier to stick to when it feels more structured. It does take a bit of research and time to get your curriculum in order, but once you have it, you're golden:) Don't have room for a classroom in your house? A breakfast bar or dinner table does just fine, and when weather permits, we school outside! It's fabulous :) Homeschooling is hard work and sometimes challenging to push through fatigue but it's been more than rewarding. I look forward to posting more about this topic and hope to hear from fellow homeschooling PWN! Blessings of Health-Hilary
***Image via Petrina McKinnor
Needless to say after the first quarter, and after several less than satisfactory issues at the charter school, I was homeschooling my kindergartners. I had never before felt compelled to homeschool, but prayer helped me acknowledge and accept this new chapter in my life. I could not quiet the gentle but firm prodding of the Holy Spirit. I knew deep down that a Christian curriculum is what my children needed. Obviously my husband had his doubts about me being able to actually stick with it and not fall asleep during teaching time. So far I have proved him wrong ;)
With all the endless resources available to us via the internet and social media, homeschooling today is easier than it has ever been. I chose to base our curriculum on A Beka Books www.abeka.com . I had used it as a student in junior high and high school and knew it was a challenging and upright program. I have also pieced together some parts of their learning with buying fun learning aids from Lakeshore Learning and using some websites for free printable worksheets and activity ideas. My favorite website/blog by far is www.confessionsofahomeschooler.com. It is a Christian based site and covers all topics, gives craft ideas, hosts awesome giveaways, and gives general advice about what you will need to start your homeschool classroom.
Some of the perks of homeschooling include: flexibility, different learning styles, control over your child's education, merging a variety of curriculum, more free time for music and sports, individualized teaching and interaction, Bible time, and watching your child blossom right before your eyes.
Special challenges of homeschooling that PWN face: feeling less than peppy in the morning, getting your child's day started before the overwhelming need for a mid morning nap sneaks up, getting distracted with laundry or cleaning while your kids are patiently waiting for you at their school desk, falling asleep mid lesson, organizational/structure challenges and the overall feeling of fatigue that taunts at you to just have a "play day" instead of school.
I'm not going to lie, I have fallen asleep right in front of my kiddos, mid-lesson! They know mommy has narcolepsy so they say, "Mommy, mommy, you're falling asleep!". They giggle, they're so sweet. Sometimes, we break for "recess" and mom gets a rest while they color or play. If we haven't finished our lessons, we simply pick up when I muster up a bit more energy. The beauty of Kindergarten is that it only takes about 1-2 hours. It's very manageable and flexible. As for my older two who are both doing online public high school, they are more self driven and I don't have to hold their hand through everything, we use Connections Academy. It has been a great program for us in Nevada. Even though it yields to Common Core standards, at least I am present to correct or discuss things if necessary.
So if you have ever contemplated homeschooling your kids, don't let your narcolepsy hold you back! My biggest tip, set a wake up time and do normal morning activities, (breakfast and getting dressed) for both you and the kiddos. Have a regular school "start time", its easier to stick to when it feels more structured. It does take a bit of research and time to get your curriculum in order, but once you have it, you're golden:) Don't have room for a classroom in your house? A breakfast bar or dinner table does just fine, and when weather permits, we school outside! It's fabulous :) Homeschooling is hard work and sometimes challenging to push through fatigue but it's been more than rewarding. I look forward to posting more about this topic and hope to hear from fellow homeschooling PWN! Blessings of Health-Hilary
Monday, April 7, 2014
Weight Loss and Narcolepsy
One of narcolepsy's risks or symptoms I guess I should say, is obesity. Whether it is caused by a slower metabolism, general fatigue, loss of motivation due to fatigue, poor quality of sleep, cataplexy issues or a combination of these issues- obesity and/or difficulty losing weight is a real problem for PWN.
Even though it can be effortless to pack on the pounds, it can be an uphill battle to work them back off. There is no single cause for the difficulty, but more of a complex imbalance of hormones, nutrients, diet and exercise, and even prescription meds. I'm not going to get all scientifically detailed regarding hormones, but keeping it short and sweet- have your hormones checked! Adrenal function and cortisol issues effect fatigue levels and manifest as belly fat. Thyroid hormone imbalance also manifests as weight loss difficulty and fatigue. Female hormones estrogen and progesterone should also be checked because they can cause emotional outbursts, weight gain, skin issues, fertility problems etc. For men, testosterone levels should be maintained as well for a healthy body weight. Along with hormone testing, other blood work should be performed to rule out anemia or malnutrition. Important levels to check are Vit D, Vit B12, magnesium, and calcium as well as having your glucose and insulin levels checked.
When the body is balanced from the inside at the cellular level, it is much easier to make changes to the outside. Nourish your body from the inside out by eating mostly organic, non-GMO foods, prepared from home. Avoid processed, refined and "diet" foods. Make label reading an automatic habit. Buy healthy oils for cooking such as olive, coconut, and avocado. Research healthy lifestyle blogs and Facebook pages such as www.100daysofrealfood.com http://WellnessMama.com www.fitlife.tv http://rebeldietician.us www.glutenfreehomemaker.com www.Draxe.com and www.realfarmacy.com just to name a few of my faves.
Last but not least, exercise is a MUST!!! Not only is exercise good for your body, it is good for your mind and soul. You will never regret having a great workout, you will regret however, not getting a workout in. You will regret letting the days go by as you sit on the couch. You will regret making excuses. You won't regret a long, slow weight loss journey. You will regret growing out of your pants. You won't regret a stronger body. I have worked out consistently since the end of January and have lost 12 pounds. It has been my slowest weight loss ever, but I am determined. I contemplate what I am going to put in my mouth, and I push myself each day at the gym. I try new things, both nutrition-wise and exercise-wise. And guess what? It's paying off and the inches are falling off. Lastly, don't deprive yourself. If you want chocolate, have some chocolate! Just substitute dark chocolate and almonds instead of a king size snicker bar ;) Moderation is the key! Sending motivation your way- Hilary
When the body is balanced from the inside at the cellular level, it is much easier to make changes to the outside. Nourish your body from the inside out by eating mostly organic, non-GMO foods, prepared from home. Avoid processed, refined and "diet" foods. Make label reading an automatic habit. Buy healthy oils for cooking such as olive, coconut, and avocado. Research healthy lifestyle blogs and Facebook pages such as www.100daysofrealfood.com http://WellnessMama.com www.fitlife.tv http://rebeldietician.us www.glutenfreehomemaker.com www.Draxe.com and www.realfarmacy.com just to name a few of my faves.
Last but not least, exercise is a MUST!!! Not only is exercise good for your body, it is good for your mind and soul. You will never regret having a great workout, you will regret however, not getting a workout in. You will regret letting the days go by as you sit on the couch. You will regret making excuses. You won't regret a long, slow weight loss journey. You will regret growing out of your pants. You won't regret a stronger body. I have worked out consistently since the end of January and have lost 12 pounds. It has been my slowest weight loss ever, but I am determined. I contemplate what I am going to put in my mouth, and I push myself each day at the gym. I try new things, both nutrition-wise and exercise-wise. And guess what? It's paying off and the inches are falling off. Lastly, don't deprive yourself. If you want chocolate, have some chocolate! Just substitute dark chocolate and almonds instead of a king size snicker bar ;) Moderation is the key! Sending motivation your way- Hilary
Do's and Dont's of A Healthy Lifestyle
Don't:
Eat processed food
Use harsh cleaning chemicals
Succumb to naysayers
Be too hard on yourself
Limit yourself
Do:
Smile Often
Laugh Loudly
Drink plenty of water
Take Naps
Love Completely
Saturday, March 8, 2014
Suddenly Sleepy Saturday 2014
Today is National Narcolepsy Awareness Day! I'm sporting my Narcolepsy: Not Alone t-shirt today and spending the day with the ones I love most, my family ❤
Enjoy your weekend and be sure to be safe and healthy! Hugs to all my fellow PWN's!
Wednesday, March 5, 2014
Sleep Week 2014
This week is Sleep Awareness Week. Sleep education is being promoted and awareness is contagious! Champion of narcolepsy awareness, Julie Flygare, is hosting a Live broadcast "Celebrating Narcolepsy Awareness" on Suddenly Sleepy Saturday March 8, 2014 at 4:00p.m. (EST). Register for this live event via Julie's website www.julieflygare.com/narcolepsy-spokesperson-broadcast/
Take a moment to learn something new or help spread awareness this week. Educate someone about the very important role that sleep plays in daily life. Happy napping ;)
Thursday, November 28, 2013
So Thankful
Happy Thanksgiving 2013!
There is so much that I am grateful for, I will name just a few...
- my God
- my family
- my friends
- my country USA!
- the ability to stay home and raise my kids, thanks honey!
- being a nurse
- my N+C, it gives me patience and understanding as well as bodily awareness
- my oils
- the beauty of the earth
- the miracle of life
Enjoy every moment and cherish every loved one.
Many blessings on this and every day- Hilary
*photos courtesy of www.crosscards.com
Monday, November 4, 2013
"Dear Hilary"
*This post is in response to Julie Flygare's Blogathon invitation titled "Dear Diagnosis"
Today you received your narcolepsy with cataplexy official diagnosis. It confirms what you already know. What you don't know is how you will treat it. You will excitedly fill the prescription for Provigil, and nervously take half of your first dose after researching the medication. Within the first ten minutes your head will feel like a tin drum with a slight ringing lasting approximately a half hour. The medicine appears to help during the first 5 days, then the sleep attacks begin to rear their ugly head again. After a couple weeks, your body begs you for a medicine holiday- meaning a day or two without meds (stimulants), so your body can rest. After another week or two, not only is the medicine no longer effective, it brings severe headaches and exhaustion. After discussing these concerns with your husband, you mutually agree that it is best not to continue with that particular drug. After even more research, you decide to go med free. It will be a lifestyle adjustment both for you and your family, but it will also be a great learning experience for all of you. You will also experience harsh criticism from fellow PWNs who simply don't believe you can live with N+C without taking prescription meds.
Today your husband is relieved that you are not miserable being married to him, and that your excessive napping is not an escape from him. Your sleepiness has taken its toll not only on you, but the ones you love most have taken it personally.
Today you and your family are grateful that it is not cancer or other terminal illness.
Today you thank God and ask how you can serve Him in this and help others.
Today the "lazy" label gets thrown out the window!
Today you reveal to your family members the confirmed diagnosis, and receive support and genuine interest in this disorder.
Today you will resign from your graveyard job as a NICU nurse with a heavy heart. With no FMLA to figure out if meds will help and no cure available, you see yourself as a hazard to the beautiful babies you work so hard to protect. It will take about 4 months before you are no longer a walking zombie as the EDS eases up slightly. Your kids are happy that you are home, and this was truly a blessing in disguise, but you will still long to bathe a newborn, attend high risk deliveries and hand a new mom her baby for the very first time.
A few months from now you will experience your first full body cataplexy attack, it is horribly frustrating but don't be scared. Your cataplexy will no longer be classified as mild, as time goes on your husband and other family members will witness your attacks (usually from laughing). Your mom doesn't handle it well, she finds it disturbing even though you insist you're fine and it doesn't hurt. I think it's just hard to see your child go through that. You will learn your triggers and can sometimes stop the attack from escalating, and sometimes warn others of an impending attack and ask for help. You contemplate designing your own medic alert bracelets for fear of ever experiencing status cataplecticus ;)
Within a year of diagnosis you will see signs of cataplexy in your teenaged firstborn daughter. Her fatigue and brain fog appear to be more than just teenager tiredness. She will express symptoms that you yourself know all too well. You will both struggle with the fact that she more than likely also has N+C in its early stages and are torn by seeking a diagnosis or not.
You will eventually find and read, Wide Awake and Dreaming by Julie Flygare and find it a great source of information and inspiration. Note to self: Don't even think about running a marathon ;)
All in all, having the diagnosis is the first step in understanding what is going on with your life and it will provide answers to some past health/physical mysteries. You will see the need for education regarding this highly misrepresented disorder, and see to it that everyone you speak to about N+C knows the reality and life changing truths about it!
You will have some physical limitations (not many, but some), and that's okay. Don't ever use narcolepsy as an excuse or crutch for not doing something that you truly are able to do.
Lastly, no matter how bad the cataplexy gets, NEVER STOP LAUGHING!
Today you received your narcolepsy with cataplexy official diagnosis. It confirms what you already know. What you don't know is how you will treat it. You will excitedly fill the prescription for Provigil, and nervously take half of your first dose after researching the medication. Within the first ten minutes your head will feel like a tin drum with a slight ringing lasting approximately a half hour. The medicine appears to help during the first 5 days, then the sleep attacks begin to rear their ugly head again. After a couple weeks, your body begs you for a medicine holiday- meaning a day or two without meds (stimulants), so your body can rest. After another week or two, not only is the medicine no longer effective, it brings severe headaches and exhaustion. After discussing these concerns with your husband, you mutually agree that it is best not to continue with that particular drug. After even more research, you decide to go med free. It will be a lifestyle adjustment both for you and your family, but it will also be a great learning experience for all of you. You will also experience harsh criticism from fellow PWNs who simply don't believe you can live with N+C without taking prescription meds.
Today your husband is relieved that you are not miserable being married to him, and that your excessive napping is not an escape from him. Your sleepiness has taken its toll not only on you, but the ones you love most have taken it personally.
Today you and your family are grateful that it is not cancer or other terminal illness.
Today you thank God and ask how you can serve Him in this and help others.
Today the "lazy" label gets thrown out the window!
Today you reveal to your family members the confirmed diagnosis, and receive support and genuine interest in this disorder.
Today you will resign from your graveyard job as a NICU nurse with a heavy heart. With no FMLA to figure out if meds will help and no cure available, you see yourself as a hazard to the beautiful babies you work so hard to protect. It will take about 4 months before you are no longer a walking zombie as the EDS eases up slightly. Your kids are happy that you are home, and this was truly a blessing in disguise, but you will still long to bathe a newborn, attend high risk deliveries and hand a new mom her baby for the very first time.
A few months from now you will experience your first full body cataplexy attack, it is horribly frustrating but don't be scared. Your cataplexy will no longer be classified as mild, as time goes on your husband and other family members will witness your attacks (usually from laughing). Your mom doesn't handle it well, she finds it disturbing even though you insist you're fine and it doesn't hurt. I think it's just hard to see your child go through that. You will learn your triggers and can sometimes stop the attack from escalating, and sometimes warn others of an impending attack and ask for help. You contemplate designing your own medic alert bracelets for fear of ever experiencing status cataplecticus ;)
Within a year of diagnosis you will see signs of cataplexy in your teenaged firstborn daughter. Her fatigue and brain fog appear to be more than just teenager tiredness. She will express symptoms that you yourself know all too well. You will both struggle with the fact that she more than likely also has N+C in its early stages and are torn by seeking a diagnosis or not.
You will eventually find and read, Wide Awake and Dreaming by Julie Flygare and find it a great source of information and inspiration. Note to self: Don't even think about running a marathon ;)
All in all, having the diagnosis is the first step in understanding what is going on with your life and it will provide answers to some past health/physical mysteries. You will see the need for education regarding this highly misrepresented disorder, and see to it that everyone you speak to about N+C knows the reality and life changing truths about it!
You will have some physical limitations (not many, but some), and that's okay. Don't ever use narcolepsy as an excuse or crutch for not doing something that you truly are able to do.
Lastly, no matter how bad the cataplexy gets, NEVER STOP LAUGHING!
Tuesday, August 27, 2013
Let Your Voice Be Heard
On September 24, 2013 the FDA is conducting a Narcolepsy Patient Focused Meeting. Narcolepsy advocates have the chance to educate and influence decision makers regarding treatment options and development. Daily life experiences and struggles with finding the right medical treatment will be conveyed, as well as what it is truly like living with narcolepsy. Personal testimonies can help researchers better understand the complexities and difficulties that PWN's experience.
Look below for ways to get involved! I filled out the survey last night right from my iPhone, it only took about ten minutes.
The following is taken from Julie Flygare's site at www.julieflygare.com
- Take the Survey: People with narcolepsy AND loved ones are invited to take this anonymous confidential survey, based on the FDA’s questions to capture the variations in patients’ experiences (about 15-20 mins to complete). Start survey here.
- Register for the Aug. 29 Webinar: Unite Narcolepsy’s first one-hour webinar will take place on Thursday August 29, at 2:00 p.m. (EDT). Please join us for this exciting “conference via web” – I will be one of the presenters. Register here.
- Spread the word: Connect with other narcolepsy advocates via social media. Like the Facebook Page and follow on Twitter (use #narcolepsy and #patientfocused).
- Attend the Sept 24, 2013 meeting in person or via webcast: The Sept. 24 meeting is open to the public and free to attend, but space is limited so register today (deadline Sept 13, 2013). Both “live” and webcast participants will be invited to get involved in the discussion. Register here.
Everyone’s experience with narcolepsy is unique, so please participate to ensure your voice is represented. Thank you!
So help get the word out! Health & Blessings- Hilary
Friday, July 12, 2013
Julie Flygare's Narcolepsy Infographic
Narcolepsy advocate Julie Flygare just came out with a brand new narcolepsy infographic. It tells the story of narcolepsy in a well designed visually appealing format.
Learn more about Julie as well as narcolepsy issues at www.julieflygare.com
She also has a variety of educational videos posted and is the author of
Wide Awake And Dreaming- a must read for all narcoleptics and family members!
Her blog is www.julieflygare.com/rem-runner-blog/
Thank You Julie!
Learn more about Julie as well as narcolepsy issues at www.julieflygare.com
She also has a variety of educational videos posted and is the author of
Wide Awake And Dreaming- a must read for all narcoleptics and family members!
Her blog is www.julieflygare.com/rem-runner-blog/
Monday, July 8, 2013
Know the difference: Cataplexy vs. Catalepsy
When I was working as an RN in the neonatal intensive care unit (NICU), I asked one of my favorite neonatologists if they knew what cataplexy was. When I eluded to the fact that I believed that I had cataplexy he said, "Oh no, that is what schizophrenics get when they are catatonic, muscle rigidity." I wasn't quite sure how to handle my response. Who was I as a mere nurse to correct him? How could I possibly know something that a doctor, a neonatologist nonetheless, was obviously uneducated about?
So I sort of giggled and explained what my understanding of cataplexy was, and also what my symptoms were. He just sort of looked at me like I was crazy. However, our little conversation made an impact. The next time that we worked together he admitted that he was mistaken about what I was talking about. What he thought that I was talking about was something entirely different, although very similar sounding- catalepsy.
Catalepsy: "A trancelike state of consciousness (as that occurring in catatonic schizophrenia) that is marked by a loss of voluntary motion and a fixed posture in which the limbs remain in whatever position they are placed." Merriam-Webster Medical Dictionary
Cataplexy: "A sudden loss of muscle control with retention of clear consciousness that follows a strong emotional stimulus (as elation, surprise or anger) and is a characteristic symptom of narcolepsy." Merriam-Webster Medical Dictionary
Sometimes by living with or experiencing a disorder, you can be the source of a wealth of information. Knowledge and education can be provided simply by sharing your first-hand experiences. Don't be intimidated by someone's credentials, just because they have a fancy title does not mean they know everything. Share your experiences- Education is advocacy!
So I sort of giggled and explained what my understanding of cataplexy was, and also what my symptoms were. He just sort of looked at me like I was crazy. However, our little conversation made an impact. The next time that we worked together he admitted that he was mistaken about what I was talking about. What he thought that I was talking about was something entirely different, although very similar sounding- catalepsy.
Catalepsy: "A trancelike state of consciousness (as that occurring in catatonic schizophrenia) that is marked by a loss of voluntary motion and a fixed posture in which the limbs remain in whatever position they are placed." Merriam-Webster Medical Dictionary
Cataplexy: "A sudden loss of muscle control with retention of clear consciousness that follows a strong emotional stimulus (as elation, surprise or anger) and is a characteristic symptom of narcolepsy." Merriam-Webster Medical Dictionary
Sometimes by living with or experiencing a disorder, you can be the source of a wealth of information. Knowledge and education can be provided simply by sharing your first-hand experiences. Don't be intimidated by someone's credentials, just because they have a fancy title does not mean they know everything. Share your experiences- Education is advocacy!
Monday, June 24, 2013
Keep In Mind
Although having a diagnosis of narcolepsy, with or without cataplexy, can bring disappointment and resentment- living and coping with narcolepsy doesn't have to be all bad. All too often we can become self absorbed. Do we focus on our illness and the limits that it sets, or do we push forward not letting our disability rule our lives?
I did not know much about narcolepsy prior to diagnosis. It's an interesting disorder and I have enjoyed learning about it as well as trying to spread awareness about it. This disorder doesn't just affect the individual, but also loved ones and those that a PWN interact with on a daily basis.
Sometimes our loved ones just don't get it or they simply don't understand, but we can't be too hard on them. Fortunately I have a very supportive family. It saddens me to know that this isn't always the case with fellow narcoleptics.
It's really ironic, but I truly dislike when my husband takes naps- which is only once or twice every few months. Here I am, the napping queen, and hate when my own husband takes a much needed rest. Of all people, I should be sympathetic to someone's need for a nap! It's a good thing that my husband doesn't have narcolepsy- it would be very draining on me. Which brings me to my point: It can not be easy for our loved ones to adjust to our spontaneous napping or lack of energy. I love that my husband has all the energy in the world, and envy him sometimes. It is not "poor me" that I have narcolepsy, but in fact my "poor family" that has to deal and adjust to me. Is it the worst thing in the world? No, I don't believe that it is.
I love my family so much, it's okay to me if they have to vent their frustrations about narcolepsy every once in a while. It is up to me to push through fatigue sometimes to accomplish daily tasks, as well as go above and beyond to create memories for my kids as opposed to laying on the couch. Sometimes taking just ten or fifteen minutes to complete or perform a task, as opposed to retreating to a nap, can mean so much to a loved one.
So keep in mind that narcolepsy is not just hard on you, but also the ones that you love. It is not easy to see loved ones being tired or exhausted. Maybe ask yourself, what you can do to make your disorder easier on them!
I did not know much about narcolepsy prior to diagnosis. It's an interesting disorder and I have enjoyed learning about it as well as trying to spread awareness about it. This disorder doesn't just affect the individual, but also loved ones and those that a PWN interact with on a daily basis.
Sometimes our loved ones just don't get it or they simply don't understand, but we can't be too hard on them. Fortunately I have a very supportive family. It saddens me to know that this isn't always the case with fellow narcoleptics.
It's really ironic, but I truly dislike when my husband takes naps- which is only once or twice every few months. Here I am, the napping queen, and hate when my own husband takes a much needed rest. Of all people, I should be sympathetic to someone's need for a nap! It's a good thing that my husband doesn't have narcolepsy- it would be very draining on me. Which brings me to my point: It can not be easy for our loved ones to adjust to our spontaneous napping or lack of energy. I love that my husband has all the energy in the world, and envy him sometimes. It is not "poor me" that I have narcolepsy, but in fact my "poor family" that has to deal and adjust to me. Is it the worst thing in the world? No, I don't believe that it is.
I love my family so much, it's okay to me if they have to vent their frustrations about narcolepsy every once in a while. It is up to me to push through fatigue sometimes to accomplish daily tasks, as well as go above and beyond to create memories for my kids as opposed to laying on the couch. Sometimes taking just ten or fifteen minutes to complete or perform a task, as opposed to retreating to a nap, can mean so much to a loved one.
So keep in mind that narcolepsy is not just hard on you, but also the ones that you love. It is not easy to see loved ones being tired or exhausted. Maybe ask yourself, what you can do to make your disorder easier on them!
Thursday, June 6, 2013
Helpful Info Regarding Social Security Disability
I was recently contacted by Ram Meyyappan from Social Security Disability Help.
Ram has provided some helpful information below to help narcoleptics navigate their way through the disability process if needed. Happy reading- Hilary
If you suffer from narcolepsy,
which is not effectively, or sufficiently controlled with medication, you may
be able to receive Social Security Disability (SSD) benefits through:
-Social Security Disability Insurance (SSDI) - a program designed to provide financial support to disabled workers.
- Supplemental Security Income
(SSI) - a need-based program designed to provide benefits for disabled
workers and their dependents who have very limited income and other
financial resources.
Article by Ram Meyyappan
Social Security Disability Help
For more information on Narcolepsy and SSD, please visit: http://www.disability-benefits-help.org/disabling-conditions/narcolepsy
Ram has provided some helpful information below to help narcoleptics navigate their way through the disability process if needed. Happy reading- Hilary
Applying for Social Security Disability with Narcolepsy
-Social Security Disability Insurance (SSDI) - a program designed to provide financial support to disabled workers.
OR
Qualifying for SSD
Programs
To receive benefits
through either of the Social Security Administration’s (SSA’s) disability
programs, you must meet the medical and the technical requirements for the
program. The medical criterion is the same for both programs, but the technical
eligibility criterion varies. For SSDI, you must have sufficient work credits
and must not earn more than the SSA’s substantial gainful activity (SGA)
monthly limit of $1,040 per month (as of 2013).
For SSI, you must have
very limited income and other financial resources.
You can learn more about
the differences between SSDI and SSI here: http://ssa-custhelp.ssa.gov/app/answers/detail/a_id/245/~/difference-between-social-security-disability-and-ssi-disability
Medical Eligibility for
SSD Benefits
To receive benefits
through either program, you must meet the SSA’s definition of disability. The
SSA considers you disabled if you are expected to be out of work for at least a
year due to your disabling conditions. You must be unable to perform the work
that you did before or for any other work for which you are qualified.
Documenting Your
Narcolepsy and Equaling a Listed Condition
The SSA follows a
standard process in evaluating applications for disability benefits. First,
they determine if you meet the technical criteria. Next, they review your
medical documentation to see if it either meets or matches a listed condition
in the SSA’s Blue Book (http://www.ssa.gov/disability/professionals/bluebook/).
Narcolepsy is not listed
in the Blue Book, which means you cannot meet a listed condition; however, the
SSA does sometimes find applicants eligible for benefits by matching their
condition to the listing for non-convulsive epilepsy, which appears in the Blue
Book under section 11.03.
To match this listing,
your medical documentation must specifically show that despite being on
prescribed medications for at least three months that you still suffer from:
- At least one narcoleptic attack
per week,
- Episodes that severely disrupt
your day activities.
- Attest to the fact that you
have adhered to prescribed therapies
- Reports that despite taking
your medications as prescribed, you continue to experience disruptive,
daytime narcoleptic attacks that severely disrupt your activities
- And which reports how
frequently your narcoleptic attacks occur and how long they typically last
Submitting Your
Application for SSD
You can complete your
disability application in person at your local SSA office or on the SSA’s
website. Completing your application online is often the fastest way to
initiate a claim as there is no need to wait for an appointment. If you do
decide to fill out your application at your local office, ensure you make an
appointment ahead of time to avoid further delays in the process.
Don’t be discouraged if you
application is initially denied. Almost 2/3 of applicants are initially denied
benefits. If you are denied, you will have to go through the appeals process,
which consists of a request for reconsideration and a disability hearing. The
disability hearing will be your best chance to get approved for benefits.
Almost 60% of claimants are approved for benefits at the hearing stage.
Since narcolepsy is not
a listed condition with the SSA, you may also want to seek the assistance of a
Social Security Disability advocate or attorney. He or she may be able to help
increase your chances of being approved for SSD benefits.
Article by Ram Meyyappan
Social Security Disability Help
For more information on Narcolepsy and SSD, please visit: http://www.disability-benefits-help.org/disabling-conditions/narcolepsy
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