tag:blogger.com,1999:blog-85027527240264979612024-03-13T15:59:32.061-07:00Narcolepsy, NaturallyA blog about narcolepsy and cataplexy awareness. A firsthand experience of a med free, holistic approach for treatment using alternative health and lifestyle changes.
Narcolepsy, Naturallyhttp://www.blogger.com/profile/01480192648074452315noreply@blogger.comBlogger41125tag:blogger.com,1999:blog-8502752724026497961.post-54919924913283563442019-01-07T18:49:00.001-08:002019-01-07T18:49:53.361-08:00Happy 2019!Happy New Year 2019!<br />
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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.<br />
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Wishing you all health and happiness in the coming year.<br />
Warmly, HilaryNarcolepsy, Naturallyhttp://www.blogger.com/profile/01480192648074452315noreply@blogger.com0tag:blogger.com,1999:blog-8502752724026497961.post-35362128109270682822018-07-02T21:13:00.000-07:002018-07-02T21:13:38.754-07:00Has 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.<br />
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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.<br />
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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.<br />
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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!<br />
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Let me know what topics you would like to cover in future blog posts!<br />
Other ways to connect: Instagram @organicdollface<br />
Facebook page- Narcolepsy Naturally- Wellness RN<br />
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In health- HilaryNarcolepsy, Naturallyhttp://www.blogger.com/profile/01480192648074452315noreply@blogger.com0tag:blogger.com,1999:blog-8502752724026497961.post-10394129831574062432016-05-17T10:10:00.001-07:002016-06-02T15:58:25.879-07:00Hello AgainWhere 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.<div>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!!!</div><div>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. </div><div>Health and blessings- Hilary</div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiINphKTju2d6gaWdr7t52q-9tuYOwDvcT94IbWgSf4cu34vLrzldUHQ-WeHLJ92EpIKIpC5M4bFi0BwIskJQbWsILBQIuyFETr20V1LEcb78b5BWSxkPrkKi8UYgHcj6xL8LDgmWRHSJ4/s640/blogger-image--759313584.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiINphKTju2d6gaWdr7t52q-9tuYOwDvcT94IbWgSf4cu34vLrzldUHQ-WeHLJ92EpIKIpC5M4bFi0BwIskJQbWsILBQIuyFETr20V1LEcb78b5BWSxkPrkKi8UYgHcj6xL8LDgmWRHSJ4/s640/blogger-image--759313584.jpg"></a></div>Narcolepsy, Naturallyhttp://www.blogger.com/profile/01480192648074452315noreply@blogger.com0tag:blogger.com,1999:blog-8502752724026497961.post-53512408726205150192016-01-06T21:16:00.001-08:002016-01-06T21:16:46.912-08:00Happy 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.<div>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.</div><div>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...</div><div>So here's to a more positively happy year, and may all of your dreams come true- Hilary</div><div><br></div>Narcolepsy, Naturallyhttp://www.blogger.com/profile/01480192648074452315noreply@blogger.com0tag:blogger.com,1999:blog-8502752724026497961.post-67395929921659028602015-02-26T07:03:00.001-08:002015-05-05T18:45:20.322-07:005 Easy and Affordable Health SwapsThere 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.<div><br></div><div>1) Swap your standard table salt for Himalayan pink salt or sea salt.</div><div><br></div><div>2) Swap margarine and other fake spreads for real butter.</div><div><br></div><div>3) Swap vegetable oils including canola and safflower for heart healthy oils such as coconut, avacado and olive oil.</div><div><br></div><div>4) Swap artificial "fake" sweeteners for honey, coconut sugar or organic turbinado (raw) sugar.</div><div><br></div><div>5) Swap sugary soda and energy drinks for fruit infused water.</div><div><br></div><div>Remember small consistent healthy swaps, lead to permanent healthy lifestyle changes! Blessings of health- Hilary</div><div><br></div><div><br></div><div><br></div><div><br></div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1xLWK4AYNA2OvIodh89lqmaZSUn1cewEqOPzK7zK5tzwwr7o6ANcUXfDGcd8dyQHYul7RnLkyJOmF-91eJJUZYtzkuHclZTMDEqXid0s-1Rk56IZrza8UbzVNZwRYgRU_sKNFhXxx4Ho/s640/blogger-image-1036606870.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1xLWK4AYNA2OvIodh89lqmaZSUn1cewEqOPzK7zK5tzwwr7o6ANcUXfDGcd8dyQHYul7RnLkyJOmF-91eJJUZYtzkuHclZTMDEqXid0s-1Rk56IZrza8UbzVNZwRYgRU_sKNFhXxx4Ho/s640/blogger-image-1036606870.jpg"></a></div><br></div>Narcolepsy, Naturallyhttp://www.blogger.com/profile/01480192648074452315noreply@blogger.com2tag:blogger.com,1999:blog-8502752724026497961.post-66251683122869935222014-12-25T12:37:00.001-08:002014-12-25T12:37:13.491-08:00Merry Christmas 2014Merry Christmas!<div>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!<span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"> </span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">God Bless- Hilary</span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNcmY6teu7kUqubu4tcUEbZ2c1dv-EkFmVbxVW3P61zUsXMsasp5tmc_Gcv-yl746SesihKzQIqrvlBzr31ZMYhQMwUm05E2Uv_yDz_dytmgymc9pECq2kb0EAuz8W1JNxerOJVwSe1vg/s640/blogger-image-2115086255.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNcmY6teu7kUqubu4tcUEbZ2c1dv-EkFmVbxVW3P61zUsXMsasp5tmc_Gcv-yl746SesihKzQIqrvlBzr31ZMYhQMwUm05E2Uv_yDz_dytmgymc9pECq2kb0EAuz8W1JNxerOJVwSe1vg/s640/blogger-image-2115086255.jpg"></a></div><div class="separator" style="clear: both;">Photo courtesy of www.crosscards.com</div><br></span></div>Narcolepsy, Naturallyhttp://www.blogger.com/profile/01480192648074452315noreply@blogger.com0tag:blogger.com,1999:blog-8502752724026497961.post-1762331983698285382014-08-14T18:24:00.002-07:002014-08-14T18:29:47.613-07:00Cataplexy TriggersLately 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!<br />
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1)<strong> Laughter</strong>- 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)<br />
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2) <strong>Anger</strong>- usually when disciplining/scolding my kids, occasionally occurs when I'm faced with confrontation<br />
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3) <strong>Embarrassment</strong>- 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.<br />
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4) <strong>Adorableness- </strong>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.<br />
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5) <strong>Being Snarky- </strong>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.<br />
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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!<br />
Cheers to muscle tone- Hilary<br />
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Narcolepsy, Naturallyhttp://www.blogger.com/profile/01480192648074452315noreply@blogger.com0tag:blogger.com,1999:blog-8502752724026497961.post-36608349495947361502014-05-26T10:15:00.001-07:002014-05-26T10:15:59.012-07:00Memorial Day 2014To 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.<div>*image from crosscards.com<br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPAkAh_B8JN9oy44m5-SDTSX5CyKd6sgrxFKC_I4uT2qNY82CtNe8L-sI3nVOyJGt1pDFjbYyeGba_Xm33qv4ihA0NYwSGD47OJzHgtayDsY9VzyIPfYIzSszdbq_hYDhaBYT1nv-4-ZM/s640/blogger-image-1001314347.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPAkAh_B8JN9oy44m5-SDTSX5CyKd6sgrxFKC_I4uT2qNY82CtNe8L-sI3nVOyJGt1pDFjbYyeGba_Xm33qv4ihA0NYwSGD47OJzHgtayDsY9VzyIPfYIzSszdbq_hYDhaBYT1nv-4-ZM/s640/blogger-image-1001314347.jpg"></a></div></div>Narcolepsy, Naturallyhttp://www.blogger.com/profile/01480192648074452315noreply@blogger.com0tag:blogger.com,1999:blog-8502752724026497961.post-62181155393420742562014-04-11T20:51:00.004-07:002014-06-09T09:43:51.907-07:00Narcoleptics 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. <br />
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 ;)<br />
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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 <a href="http://www.abeka.com/">www.abeka.com</a> . 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 <a href="http://www.confessionsofahomeschooler.com/">www.confessionsofahomeschooler.com</a>. 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.<br />
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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.<br />
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.<br />
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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.<br />
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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<br />
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***Image via Petrina McKinnorNarcolepsy, Naturallyhttp://www.blogger.com/profile/01480192648074452315noreply@blogger.com0tag:blogger.com,1999:blog-8502752724026497961.post-89302864933325029452014-04-07T20:36:00.000-07:002014-05-02T21:22:00.028-07:00Weight Loss and NarcolepsyOne 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.<br>
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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.<br>
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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 <a href="http://www.100daysofrealfood.com/">www.100daysofrealfood.com</a> <a href="http://wellnessmama.com/">http://WellnessMama.com</a> <a href="http://www.fitlife.tv/">www.fitlife.tv</a> <a href="http://rebeldietician.us/">http://rebeldietician.us</a> <a href="http://www.glutenfreehomemaker.com/">www.glutenfreehomemaker.com</a> <a href="http://www.draxe.com/">www.Draxe.com</a> and <a href="http://www.realfarmacy.com/">www.realfarmacy.com</a> just to name a few of my faves.<br>
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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</div>
<br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhM8YCOzsPMgJBC25FSdyc3UqSDTo7dZXUVrOWBLGI98VUtg_1OmeDX0RRniLfpbZ_XzMz7UdRc5yB71LT4N9gPa3TwA2veGWtnnJFBjwbDILFYT3z_5Fu1TOxSmjUo6ikJou7lUxIrfc0/s640/blogger-image--808927537.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhM8YCOzsPMgJBC25FSdyc3UqSDTo7dZXUVrOWBLGI98VUtg_1OmeDX0RRniLfpbZ_XzMz7UdRc5yB71LT4N9gPa3TwA2veGWtnnJFBjwbDILFYT3z_5Fu1TOxSmjUo6ikJou7lUxIrfc0/s640/blogger-image--808927537.jpg"></a></div>Narcolepsy, Naturallyhttp://www.blogger.com/profile/01480192648074452315noreply@blogger.com1tag:blogger.com,1999:blog-8502752724026497961.post-83464483775923489382014-04-07T20:08:00.005-07:002016-01-20T21:07:17.165-08:00Do's and Dont's of A Healthy LifestyleDon't:<div>Eat processed food</div><div>Use harsh cleaning chemicals<br><div>Succumb to naysayers</div><div>Be too hard on yourself</div><div>Limit yourself</div><div><br></div><div>Do:</div><div>Smile Often</div><div>Laugh Loudly</div><div>Drink plenty of water</div><div>Take Naps</div><div>Love Completely</div><div><br><div><br></div></div></div>Narcolepsy, Naturallyhttp://www.blogger.com/profile/01480192648074452315noreply@blogger.com0tag:blogger.com,1999:blog-8502752724026497961.post-88845363358406775382014-03-08T12:59:00.001-08:002014-03-08T13:57:00.230-08:00Suddenly Sleepy Saturday 2014Today 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 ❤<div><br></div><div>Enjoy your weekend and be sure to be safe and healthy! Hugs to all my fellow PWN's!<div class="separator" style="clear: both;"><br></div></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHiHZWWzCVL3y4ehD-on0kBKKkSPwUfLawRe6ygh0HhUcYRX6nL9IopdNk4MxZ0iyCvAdzLNrk8OW_j67nQwjgLXxIjRJ50rmVnz62AZ80IPP7EXKKjcYmtoqd-P6qYWZM805oNppSgXE/s640/blogger-image-566430114.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHiHZWWzCVL3y4ehD-on0kBKKkSPwUfLawRe6ygh0HhUcYRX6nL9IopdNk4MxZ0iyCvAdzLNrk8OW_j67nQwjgLXxIjRJ50rmVnz62AZ80IPP7EXKKjcYmtoqd-P6qYWZM805oNppSgXE/s640/blogger-image-566430114.jpg"></a></div>Narcolepsy, Naturallyhttp://www.blogger.com/profile/01480192648074452315noreply@blogger.com0tag:blogger.com,1999:blog-8502752724026497961.post-6821298487207012342014-03-05T20:39:00.001-08:002014-03-07T08:33:11.989-08:00Sleep Week 2014This week is Sleep Awareness Week. Sleep education is being promoted and awareness is contagious! Champion of narcolepsy awareness, <a href="http://www.julieflygare.com/">Julie Flygare</a>, 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 <a href="http://www.julieflygare.com/narcolepsy-spokesperson-broadcast/">www.julieflygare.com/narcolepsy-spokesperson-broadcast/</a><br />
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<span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">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 ;)</span></div>
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Narcolepsy, Naturallyhttp://www.blogger.com/profile/01480192648074452315noreply@blogger.com0tag:blogger.com,1999:blog-8502752724026497961.post-37255559733281375592013-11-28T05:52:00.001-08:002015-07-23T13:22:54.767-07:00So Thankful<div class="separator" style="clear: both;">Happy Thanksgiving 2013!</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">There is so much that I am grateful for, I will name just a few...</div><div class="separator" style="clear: both;">- my God</div><div class="separator" style="clear: both;">- my family</div><div class="separator" style="clear: both;">- my friends</div><div class="separator" style="clear: both;">- my country USA!</div><div class="separator" style="clear: both;">- the ability to stay home and raise my kids, thanks honey!</div><div class="separator" style="clear: both;">- being a nurse</div><div class="separator" style="clear: both;">- my N+C, it gives me patience and understanding as well as bodily awareness</div><div class="separator" style="clear: both;">- my oils</div><div class="separator" style="clear: both;">- the beauty of the earth</div><div class="separator" style="clear: both;">- the miracle of life</div><div class="separator" style="clear: both;">Enjoy every moment and cherish every loved one.</div><div class="separator" style="clear: both;">Many blessings on this and every day- Hilary</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">*photos courtesy of www.crosscards.com</div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNefK_pBK9MrvMYikb0pVPhAAJWXVdz6XD7FtSZownYKUXft8S_YKqe2hi8FzwmHi81Ey5ObOjXDh6OG4g4AiSvC2Y8OXPAYkcdHGBJ02CVpcPqNmL5K-H8bcFPunYrcSyVeK3DbUBTsk/s640/blogger-image--1014052356.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNefK_pBK9MrvMYikb0pVPhAAJWXVdz6XD7FtSZownYKUXft8S_YKqe2hi8FzwmHi81Ey5ObOjXDh6OG4g4AiSvC2Y8OXPAYkcdHGBJ02CVpcPqNmL5K-H8bcFPunYrcSyVeK3DbUBTsk/s640/blogger-image--1014052356.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgm316d1ve2HKvCR_ZHdT5gHPtF_HEv1JLXiVT7wYiQi-_ZSeouLfyxGM6qu-W_S5C7C33t0IhxnCVTeYXOb0QB7Y25ATBr1ycW-YvUNnkDWAn0GOWC8Dtha_Hce-LgsXWl-XijSIIUHgo/s640/blogger-image--1606386101.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgm316d1ve2HKvCR_ZHdT5gHPtF_HEv1JLXiVT7wYiQi-_ZSeouLfyxGM6qu-W_S5C7C33t0IhxnCVTeYXOb0QB7Y25ATBr1ycW-YvUNnkDWAn0GOWC8Dtha_Hce-LgsXWl-XijSIIUHgo/s640/blogger-image--1606386101.jpg"></a></div><br></div><div class="separator" style="clear: both;"><br></div>Narcolepsy, Naturallyhttp://www.blogger.com/profile/01480192648074452315noreply@blogger.com0tag:blogger.com,1999:blog-8502752724026497961.post-38664999645556896832013-11-04T19:49:00.001-08:002016-08-24T08:41:28.345-07:00"Dear Hilary"*This post is in response to Julie Flygare's Blogathon invitation titled "Dear Diagnosis"<br>
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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. <br>
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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.<br>
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Today you and your family are grateful that it is not cancer or other terminal illness.<br>
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Today you thank God and ask how you can serve Him in this and help others.<br>
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Today the "lazy" label gets thrown out the window! <br>
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Today you reveal to your family members the confirmed diagnosis, and receive support and genuine interest in this disorder.<br>
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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.<br>
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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 ;)<br>
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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.<br>
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You will eventually find and read, <i>Wide Awake and Dreaming</i> by <a href="http://www.julieflygare.com/">Julie Flygare</a> and find it a great source of information and inspiration. Note to self: Don't even think about running a marathon ;)<br>
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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!<br>
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.<br>
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Lastly, no matter how bad the cataplexy gets, NEVER STOP LAUGHING! <div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaA70hjzYan8QGZ-ZPycIIQGr6dUFf_1dzjmpemoIerWdAwCsVnBfKnj-UHFaK5WCJweX-Hi5wwXIno8t-xkwUj0pSuVg3_C4lI0ffhocccVT-fAz6K_aNLRya15PhQiKBQp3z70oH9m8/s640/blogger-image--540423478.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaA70hjzYan8QGZ-ZPycIIQGr6dUFf_1dzjmpemoIerWdAwCsVnBfKnj-UHFaK5WCJweX-Hi5wwXIno8t-xkwUj0pSuVg3_C4lI0ffhocccVT-fAz6K_aNLRya15PhQiKBQp3z70oH9m8/s640/blogger-image--540423478.jpg"></a></div><br></div>Narcolepsy, Naturallyhttp://www.blogger.com/profile/01480192648074452315noreply@blogger.com4tag:blogger.com,1999:blog-8502752724026497961.post-66226531024465706182013-08-27T11:14:00.000-07:002013-08-27T11:17:24.409-07:00Let Your Voice Be Heard<img alt="unite narcolepsy logo fda 300x131 Help FDA Understand Narcolepsy Today Take Survey, Webinars & More!" class="aligncenter size-medium wp-image-6210" height="87" src="http://julieflygare.com/wp-content/uploads/2013/08/unite-narcolepsy-logo-fda-300x131.jpg" title="Help FDA Understand Narcolepsy Today Take Survey, Webinars & More!" width="200" /><br />
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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.<br />
Look below for ways to get involved! I filled out the survey last night right from my iPhone, it only took about ten minutes. <br />
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The following is taken from Julie Flygare's site at <a href="http://www.julieflygare.com/">www.julieflygare.com</a><br />
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<ul>
<li><b>Take the Survey:</b> 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). <a href="https://www.surveymonkey.com/s/unitenarcolepsy" target="_blank">Start survey here</a>. </li>
<li><b>Register for the Aug. 29 Webinar:</b> 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. <a href="https://attendee.gotowebinar.com/register/9108781287590981632" target="_blank">Register here. </a></li>
<li><b>Spread the word:</b> Connect with other narcolepsy advocates via social media. Like the <a href="https://www.facebook.com/UniteNarcolepsy" target="_blank">Facebook Page</a> and follow on <a href="https://twitter.com/unitenarcolepsy" target="_blank">Twitter</a> (use #narcolepsy and #patientfocused).</li>
<li><b>Attend the Sept 24, 2013 meeting in person or via webcast:</b> 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. <a href="http://patientfocusednarcolepsy.eventbrite.com/" target="_blank">Register here</a>.</li>
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<span style="font-size: large;"><b><i>**If you can do ONE thing today, please take the <a href="https://www.surveymonkey.com/s/unitenarcolepsy" target="_blank">survey</a>.**</i></b></span><br />
Everyone’s experience with narcolepsy is unique, so please participate to ensure your voice is represented. Thank you!<br />
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So help get the word out! Health & Blessings- Hilary Narcolepsy, Naturallyhttp://www.blogger.com/profile/01480192648074452315noreply@blogger.com4tag:blogger.com,1999:blog-8502752724026497961.post-57134939356455799162013-07-12T11:25:00.002-07:002013-07-12T11:25:42.592-07:00Julie Flygare's Narcolepsy InfographicNarcolepsy 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.<br />
Learn more about Julie as well as narcolepsy issues at <a href="http://www.julieflygare.com/">www.julieflygare.com</a><br />
She also has a variety of educational videos posted and is the author of<br />
<u><i>Wide Awake And Dreaming</i></u>- a must read for all narcoleptics and family members!<br />
Her blog is <a href="http://www.julieflygare.com/rem-runner-blog/">www.julieflygare.com/rem-runner-blog/</a> <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQWIOqyPYY0QjVeTziRqwQupUfacx7aFcYqimOg-lVd0jbZAf5pHysK4GTLkWdETwPRj24yoYhTN-Oj5xCP_NUru37dGK6x2YyU8kj49igxUgBJWOFWJvKH6W_0PGYyg3hEMwqkrN5pK4/s1600/July's+N+Infographic.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQWIOqyPYY0QjVeTziRqwQupUfacx7aFcYqimOg-lVd0jbZAf5pHysK4GTLkWdETwPRj24yoYhTN-Oj5xCP_NUru37dGK6x2YyU8kj49igxUgBJWOFWJvKH6W_0PGYyg3hEMwqkrN5pK4/s320/July's+N+Infographic.jpg" width="171" /></a></div>
<b>Thank You Julie!</b>Narcolepsy, Naturallyhttp://www.blogger.com/profile/01480192648074452315noreply@blogger.com0tag:blogger.com,1999:blog-8502752724026497961.post-71125650660117160052013-07-08T20:10:00.001-07:002013-07-08T20:10:08.724-07:00Know the difference: Cataplexy vs. CatalepsyWhen 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?<br />
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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- <i>catalepsy.</i><br />
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<b>Catalepsy:</b> "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." <i>Merriam-Webster Medical Dictionary</i><br />
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<b>Cataplexy: "</b>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." <i>Merriam-Webster Medical Dictionary</i><br />
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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!<br />
<br />Narcolepsy, Naturallyhttp://www.blogger.com/profile/01480192648074452315noreply@blogger.com1tag:blogger.com,1999:blog-8502752724026497961.post-5227317709520521262013-06-24T14:16:00.000-07:002013-06-24T14:16:18.368-07:00Keep In MindAlthough having a diagnosis of narcolepsy, with or without cataplexy, can bring disappointment and resentment- <em>living</em> <em>and coping </em>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?<br />
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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.<br />
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. <br />
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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.<br />
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.<br />
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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!Narcolepsy, Naturallyhttp://www.blogger.com/profile/01480192648074452315noreply@blogger.com0tag:blogger.com,1999:blog-8502752724026497961.post-18802785437565926942013-06-06T13:34:00.002-07:002013-06-06T13:34:19.713-07:00Helpful Info Regarding Social Security Disability
I was recently contacted by Ram Meyyappan from Social Security Disability Help.<br />
Ram has provided some helpful information below to help narcoleptics navigate their way through the disability process if needed. Happy reading- Hilary<br />
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<b><span style="color: black; font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-fareast-font-family: "Times New Roman";">Applying for Social Security Disability with Narcolepsy</span></b><span style="font-family: "Times New Roman","serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";"><o:p> </o:p></span><span style="color: black; font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-fareast-font-family: "Times New Roman";">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:</span><span style="font-family: "Times New Roman","serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-fareast-font-family: "Times New Roman";"><span style="font-family: Times New Roman; font-size: small;"> -</span>Social Security Disability
Insurance (SSDI) - a program designed to provide financial support to
disabled workers.<o:p></o:p></span><br />
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<span style="color: black; font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-fareast-font-family: "Times New Roman";">OR</span><span style="font-family: "Times New Roman","serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";"><o:p> -</o:p></span><span style="font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-fareast-font-family: "Times New Roman";">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. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";"><o:p> </o:p></span></div>
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<b><span style="color: black; font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-fareast-font-family: "Times New Roman";">Qualifying for SSD
Programs</span></b><span style="font-family: "Times New Roman","serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
<br />
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<span style="color: black; font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-fareast-font-family: "Times New Roman";">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).</span><span style="font-family: "Times New Roman","serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";">
</span><span style="color: black; font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-fareast-font-family: "Times New Roman";">For SSI, you must have
very limited income and other financial resources. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="color: black; font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-fareast-font-family: "Times New Roman";"></span><br /></div>
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="color: black; font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-fareast-font-family: "Times New Roman";">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</span><span style="font-family: "Times New Roman","serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<b><span style="color: black; font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-fareast-font-family: "Times New Roman";">Medical Eligibility for
SSD Benefits</span></b><span style="font-family: "Times New Roman","serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
<br />
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<span style="color: black; font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-fareast-font-family: "Times New Roman";">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. <o:p></o:p></span></div>
<br />
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<span style="color: black; font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-fareast-font-family: "Times New Roman";"> </span><b><span style="color: black; font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-fareast-font-family: "Times New Roman";">Documenting Your
Narcolepsy and Equaling a Listed Condition</span></b><span style="font-family: "Times New Roman","serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
<br />
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<span style="color: black; font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-fareast-font-family: "Times New Roman";">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/).
</span><span style="font-family: "Times New Roman","serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="color: black; font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-fareast-font-family: "Times New Roman";">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. </span><span style="font-family: "Times New Roman","serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="color: black; font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-fareast-font-family: "Times New Roman";">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: </span><span style="font-family: "Times New Roman","serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";"><o:p> </o:p></span><br />
<ul style="margin-top: 0in;" type="disc">
<li class="MsoNormal" style="color: black; line-height: normal; margin: 0in 0in 0pt; mso-list: l2 level1 lfo3; tab-stops: list .5in; vertical-align: baseline;"><span style="font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-fareast-font-family: "Times New Roman";">At least one narcoleptic attack
per week,<o:p></o:p></span></li>
</ul>
<span style="color: black; font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-fareast-font-family: "Times New Roman";"> <span style="mso-tab-count: 1;"> </span>AND</span><span style="font-family: "Times New Roman","serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span><br />
<br />
<ul style="margin-top: 0in;" type="disc">
<li class="MsoNormal" style="color: black; line-height: normal; margin: 0in 0in 0pt; mso-list: l4 level1 lfo4; tab-stops: list .5in; vertical-align: baseline;"><span style="font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-fareast-font-family: "Times New Roman";">Episodes that severely disrupt
your day activities.<o:p></o:p></span></li>
</ul>
<span style="color: black; font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-fareast-font-family: "Times New Roman";">A crucial component of
documenting your narcolepsy to meet SSA requirements is a detailed statement
from your treating physician that:</span><span style="font-family: "Times New Roman","serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span><br />
<br />
<ul style="margin-top: 0in;" type="disc">
<li class="MsoNormal" style="color: black; line-height: normal; margin: 0in 0in 0pt; mso-list: l6 level1 lfo5; tab-stops: list .5in; vertical-align: baseline;"><span style="font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-fareast-font-family: "Times New Roman";">Attest to the fact that you
have adhered to prescribed therapies<o:p></o:p></span></li>
</ul>
<br />
<ul style="margin-top: 0in;" type="disc">
<li class="MsoNormal" style="color: black; line-height: normal; margin: 0in 0in 0pt; mso-list: l1 level1 lfo6; tab-stops: list .5in; vertical-align: baseline;"><span style="font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-fareast-font-family: "Times New Roman";">Reports that despite taking
your medications as prescribed, you continue to experience disruptive,
daytime narcoleptic attacks that severely disrupt your activities<o:p></o:p></span></li>
</ul>
<br />
<ul style="margin-top: 0in;" type="disc">
<li class="MsoNormal" style="color: black; line-height: normal; margin: 0in 0in 0pt; mso-list: l0 level1 lfo7; tab-stops: list .5in; vertical-align: baseline;"><span style="font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-fareast-font-family: "Times New Roman";">And which reports how
frequently your narcoleptic attacks occur and how long they typically last<o:p></o:p></span></li>
</ul>
<br />
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<b><span style="color: black; font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-fareast-font-family: "Times New Roman";">Submitting Your
Application for SSD</span></b><span style="font-family: "Times New Roman","serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="color: black; font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-fareast-font-family: "Times New Roman";">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.</span><span style="font-family: "Times New Roman","serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="font-family: "Arial","sans-serif"; font-size: 10pt; mso-fareast-font-family: "Times New Roman";">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.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="color: black; font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-fareast-font-family: "Times New Roman";">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. </span><span style="font-family: "Times New Roman","serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%; mso-fareast-font-family: "Times New Roman";">
<br />
</span><span style="font-family: Calibri;">Article by Ram Meyyappan<br />
Social Security Disability Help<br />
For more information on Narcolepsy and SSD, please visit: </span><a href="http://www.disability-benefits-help.org/disabling-conditions/narcolepsy"><span style="color: blue; font-family: Calibri;">http://www.disability-benefits-help.org/disabling-conditions/narcolepsy</span></a><o:p></o:p><br />
<br />
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<o:p><span style="font-family: Calibri;"> </span></o:p></div>
Narcolepsy, Naturallyhttp://www.blogger.com/profile/01480192648074452315noreply@blogger.com0tag:blogger.com,1999:blog-8502752724026497961.post-31593093429610860662013-06-04T09:56:00.001-07:002013-06-04T09:56:31.676-07:00CLEAN Detox Anyone?Maybe you're a health fanatic, maybe you're not. Maybe you're a foodie and love indulgent culinary masterpieces, maybe you enjoy simplicity. Maybe you're sort of non-partisan and put little to no thought as to what goes into your body. Whatever the case, most everybody can benefit from a nice cleansing/detox program. There are many different types of cleanses: water fasting, juice cleanse, gluten free, boxed sets of detox supplements with probiotics, and elimination diet plans etc.<br />
*Consult your doctor prior to a cleanse/detox. <br />
<br />
Just over a month ago I completed a detox/cleanse. I did it with the intention of simply making my body healthier. The bonus was a weight loss of 13 pounds- a side effect that I can happily live with. During the cleanse I took a hiatus from exercise and only worked out twice during this 3 week period. So the weight loss, for me, was even more impressive. <br />
<br />
I downloaded the book <u>CLEAN</u> by Dr. Junger and read the majority of the book before I even started the plan. There is so much info and pathophysiological explanations for bodily functions- it's great!<br />
Disclaimer- There are a few references involving evolution, so if you are a creationist as I am, take it with a grain of salt and move forward in the reading. The plan, in summation, is basically an elimination diet as well as letting your gut properly digest and function by allowing 12 hrs/night "fasting". Also, you have a smoothie/juice for breakfast, normal lunch, smoothie/soup/juice for dinner. Things that are eliminated during this cleanse are: gluten, dairy, eggs, sugar, caffeine, and alcohol (I think that's it). Prepare to stock your fridge/pantry with plenty of green veggies, lemon, plant based protein powder, fish, chicken, coconut & olive oil, almond &coconut milk, raw nuts, chia/flax/hemp seeds, frozen fruit (smoothies), apple cider vinegar and almond/cashew butter- just to name a few.<br />
If this at all intrigues you, I highly recommend it. I will warn however that the first day or two or three, you may feel exceedingly fatigued if you have narcolepsy. If you suffer a caffeine headache, Dr. Junger suggests green tea in moderation is allowed despite its caffeine content. I only needed it once. It does take time to pre plan your meals/smoothies due to the fact that you can't just stop and get fast food. If you have severe time restraints and have a budget that can afford it, Dr. Junger also has a CLEAN program kit that you can buy.<br />
If you have existing intestinal issues, Dr. Junger just wrote a new book called <u>Clean Gut</u> that targets gut issues and healing. This plan is even more restrictive that <u>CLEAN.</u><br />
<br />
For more info try <a href="http://www.cleanprogram.com/">www.cleanprogram.com</a> or FB site <a href="http://www.facebook.com/cleanprogram">www.facebook.com/cleanprogram</a> <br />
<br />
Whatever you may choose to do with your health, please just make conscious educated decisions. Small changes can have a huge impact: cutting out fast food and soda, quitting smoking, buying organic when possible, staying away from GMO's, switching to olive oil for cooking, cutting out preservatives and hydrogenated oils, etc... Even if its just baby steps, your body will love you for it.Narcolepsy, Naturallyhttp://www.blogger.com/profile/01480192648074452315noreply@blogger.com0tag:blogger.com,1999:blog-8502752724026497961.post-65436087792422727662013-05-28T07:57:00.001-07:002013-05-28T07:57:00.975-07:00A little inspiration.For those days when you're not feeling exactly like a super hero... I came across this from a friend on Facebook. <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHLgzbOQtT2WyE2NkbdUu_YEknaB_3-LBq9ajfOKEtUQi34g_qXSohyHcp0hZGEzi9mhyphenhyphenAAY0EawaKjxo7iGk_rgHZMoCfcVDXYWfk6NOG_z3b5iybqfNAl0jEP1V1J8nWCwCorvz2jRs/s640/blogger-image--836902899.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHLgzbOQtT2WyE2NkbdUu_YEknaB_3-LBq9ajfOKEtUQi34g_qXSohyHcp0hZGEzi9mhyphenhyphenAAY0EawaKjxo7iGk_rgHZMoCfcVDXYWfk6NOG_z3b5iybqfNAl0jEP1V1J8nWCwCorvz2jRs/s640/blogger-image--836902899.jpg" /></a></div>Narcolepsy, Naturallyhttp://www.blogger.com/profile/01480192648074452315noreply@blogger.com0tag:blogger.com,1999:blog-8502752724026497961.post-59507620715404666752013-05-27T13:02:00.001-07:002013-05-27T13:02:06.706-07:00Happy Memorial Day 2013There are no words to describe our gratitude to those who have served and given their lives, and to their loved ones who live to carry on their memory. God Bless America! <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEij-bIcf0QMK44NZefKurvdWGB4b5XGhJF69rht8PKKr5hzmmy_8I68oWhQcNi7lKfRHMw8RuGUXhOCentFXi7xsn0w633LgUH09Lmi_Ia73toKr1qN_auGFladyBDuMnJ8T3a0fyIhks0/s640/blogger-image--1069253039.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEij-bIcf0QMK44NZefKurvdWGB4b5XGhJF69rht8PKKr5hzmmy_8I68oWhQcNi7lKfRHMw8RuGUXhOCentFXi7xsn0w633LgUH09Lmi_Ia73toKr1qN_auGFladyBDuMnJ8T3a0fyIhks0/s640/blogger-image--1069253039.jpg" /></a></div>Narcolepsy, Naturallyhttp://www.blogger.com/profile/01480192648074452315noreply@blogger.com0tag:blogger.com,1999:blog-8502752724026497961.post-61449757307989943092013-05-20T13:28:00.000-07:002019-01-07T18:38:03.608-08:00Supporting a PWNIf someone you know or love has narcolepsy, here are a few things to remember:<br>
<br>
1) Don't take their sleepiness personal! A PWN (person with narcolepsy) sometimes simply can't help it if they fall asleep- even mid conversation. Also, sometimes the lure of a nap is much more appealing than participating in an activity, for example going to the park, going shopping, or participating in a DIY project. Simply put, the idea of a nap for a narcoleptic is quite intoxicating while the idea of an activity can just be exhausting.<br>
<br>
2) Don't give a PWN a hard time about napping, or put a guilt trip on them. Trust me, we are hard enough on ourselves and the added guilt of loved ones is almost unbearable.<br>
<br>
3) Don't think for a second that we value sleep more than loved ones- although we value sleep greatly when we get it, we would much rather be like the Energizer Bunny and have an abundant supply of energy to participate in endless adventures with loved ones.<br>
<br>
4) Do be supportive and encouraging!<br>
<br>
5) Do make an effort to be understanding on those "bad days" when nothing seems to get accomplished due to fatigue.<br>
<br>
6) Do make an attempt to search out information regarding an element of narcolepsy such as: research, treatment, diagnosis, blogs, facebook pages, charity/awareness events etc. A slight bit of interest shown by those we love can truly warm our hearts ;)<br>
<br>
7) Do be aware of the triggers that can cause cataplexy. If you're going to show a PWN something funny on your phone for example, make sure they're sitting! Randomly showing a funny picture to a PWN in a grocery store for instance, isn't the smartest move to make- be ready to catch them if they fall...<br>
<br>
8) Don't use your friend's narcolepsy/cataplexy as a form of entertainment. It's not nice to laugh at someone else's expense- unless of course the PWN is a willing participant. Remember, it's okay to laugh <em>with </em>them, not <em>at </em>them.<br>
<br>
9) Do be sensitive to the fact that health information is very private. Discussing another person's illness without their permission is a huge no-no. This includes disclosing information about what medications the PWN may be taking or have taken in the past. <br>
<br>
10) Don't criticize or judge, but please be honest. <br>
<br>
11) Do listen. Sometimes all we need to do is vent our frustrations or recount events such as cataplexy attacks, automatic behaviors, and hypnogogic hallucinations. Having validation from a loved one can make the experience not so lonely.<br>
<br>
Narcolepsy, Naturallyhttp://www.blogger.com/profile/01480192648074452315noreply@blogger.com2tag:blogger.com,1999:blog-8502752724026497961.post-42537510796528050002013-05-12T14:09:00.000-07:002013-05-12T14:09:38.898-07:00Happy Mother's Day 2013Happy Mother's Day to all you mom's (or mum's) out there!<br />
<br />
Whether you are a mom with narcolepsy or have a child with narcolepsy- or maybe your mom has narcolepsy- you are very dear to those you love! This is a day of reflection and also remembrance. Make sure to express your love and gratitude to the motherly figures in your life. Also, to my fellow MWN's (moms with narcolepsy)- You are the best mom ever, even though you may be the sleepiest mom ever ;)<br />
<br />
So cheers to all you mama's, may your day be filled with love and blessings- and may your nap time be ever so refreshing! Narcolepsy, Naturallyhttp://www.blogger.com/profile/01480192648074452315noreply@blogger.com0