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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!

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

Applying for Social Security Disability with Narcolepsy

 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.

OR

       -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.

 
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,
            AND

  • Episodes that severely disrupt your day activities.
A crucial component of documenting your narcolepsy to meet SSA requirements is a detailed statement from your treating physician that:

  • 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

 

Tuesday, June 4, 2013

CLEAN 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.
*Consult your doctor prior to a cleanse/detox.

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.

I downloaded the book CLEAN 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!
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.
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.
If you have existing intestinal issues, Dr. Junger just wrote a new book called Clean Gut that targets gut issues and healing. This plan is even more restrictive that CLEAN.

For more info try www.cleanprogram.com  or FB site www.facebook.com/cleanprogram

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.