Healthy Living

Thursday, December 10, 2009

When Disability Intrudes

Hi, my name is Rachel. I am 27 and live with severe Narcolepsy with Cataplexy, Fibromyalgia, and RA. Basically, I am almost always severely sleepy and in pain. Some may consider me weak, but I would beg to disagree. I would say that anyone living with a disability is exceptionally strong, patient, and loving. Here we are living our lives, and BAM... nothing is ever the same once debilitating disability strikes.

I am no longer able to drive or work a normal job. I am a strong Young Adults with Disabilites Advocate and Your Sleepy AVON Lady .  Though Social Security decided I am permanently disabled, unable to work, I am not able to get Social Securtiy or any Goverment Assistance, because I am 2 work credits short of getting SSDI, and SSI benefits are based on Cost of Living Figures from the 1970's!  We just lost our home to foreclosure, it broke my heart. We just moved into an Apt., and are already unable to pay the rent! 

Basically, to live with disability, is a constant struggle of unimaginable fortitude. I try to help others living with disability cope with dailiy living and diagnosis. I love to help others the best I can, and if you have health insurance, you are so blessed. I have Aetna, and the copays still total more than $400 a month for all my doctor apts. and prescriptions! I take pride in reaching out and trying to educate others about living with disability and help those who are looking for answers. Check out my Myspace   for more information and relevant videos, etc.

If you are living with strange symtoms, and/or your disability has intruded upon your life to the point of being unalbe to work or enjoy life, please reach out for help.  Feel free to contact me for help anytime.

The road is long, hard, and brave, but we are never alone... we always have one another and our Lord watching over us.

Syndication:

From the Community…

Comments 1-9 of 9
  • Measongs's Avatar
    Posted by Measongs Sat Apr 5, 2008 12:55am PDT

    I too have a dissabilty.that has no name yet.I was told in the past that it was fibromyalgia,or arthritis,flu,a form of lupus,even that it was in my head.inow have been told it is neuropothy(nerve damage) due to a chronic imuno degenerative neuropothy.(nerve damage).That they want me to go for introvenus treatments.Im lost! I have suffered with this for 10 years now.And though I may appear healthy,I am in constant pain and weakness.I have state insurance,meaning..few if no options and poor care.Sometimes I dont want to go on.No sure prognosis,Doctors who keep dropping your insurance-because it doesnt pay enough,no medication to help with the pain,not much hope.This country should not have a medical system working against its people.

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  • Your Sleepy AVON Lady's Avatar
    Posted by Your Sleepy AVON Lady Sat Apr 5, 2008 2:00pm PDT

    Yes, so many others just like you are in this same predicament... we did NOTHING to aquire our chronic debilitating conditions, but cannot or can barely care for ourselves. We deserve no less than Senior Citizens... Medicare, Medicaid... affordable access to quality health care, food, our BASIC NEEDS. Other wise please stop our suffering day to day without basic necessities and just let us die. I am so disgusted that I am not alone by far. We cannot allow Social Securtiy and Society/Government abbandon us anymore... We are America's Forgotten Children... because we cannot care/support ourselves, but have been abandoned nonetheless, because we are legal "adults." Where is the Humanity. If we are a ProLife culture, then let us be Prolife for every person, not just fetuses!

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  • jehornsby's Avatar
    Posted by jehornsby Wed Apr 9, 2008 4:31pm PDT

    Rachel, ask your doctors about Lyrica if they have not already prescribed it. It helps with my nerve problems, I do not have fibromyalgia but nerve damage from degenerative disc disease. TV ads now say it is approved for fibromyalgia, and it is much better than Neurontin with less side effects! God Bless and keep your spirits up!

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  • The Fibro Fairy's Avatar
    Posted by The Fibro Fairy Mon Apr 28, 2008 7:33pm PDT

    I totally feel your pain. I am in the SSI Struggle right now. I have Fibromyalgia, Chronic Myofascial Pain, Chronic Fatigue, and found out a week ago I have arthritis in my neck.

    I, of course, got denied on my initial claim, but have hired a lawyer, so I am hoping things will look up.

    I wish you the best of luck with everything.

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  • JohnB's Avatar
    Posted by JohnB Mon Apr 28, 2008 11:03pm PDT

    One of the concerns today in society is health care. Many people feel that they have to pay the huge cost of health care or go without anything at all. That is not the case.

    These programs serve two puposes; one for the already insured and one for the completely uninsured.

    There are programs that help get deep discounts on things insurance does not cover if you already have insurance (25% off of braces/lasik/physical therapy, lab work, high end prescriptions etc) for the under-insured. These programs are a great supplement to insurance and can even offer vision and dental for people with medicaid or medicare.

    If you are one of those that are not able to get health/dental/vision/chiro/prescription/hospital insurance at all and are un-insured, this offers great assistance and is a lot better than nothing at all.

    One such site (company) is www.lowcostgreatbenefits.com from a national / 500,000 provider / 1,500,000 customer company. You can actually sign up right there on the site and see the story about this company from the American Medical Review.

    Pre-Existing conditions do not matter

    with this program and there are no (yes I said NO) disqualifications. You get one simple card in the mail in about 10 days after signing up at www.lowcostgreatbenefits.com and present it at the time of service. For some services, you need to check for local providers. Some services work no matter where you are in the country (like the hospital package).

    One fee ranging from $19.95/mo up to $59.95 (most get a health/dental/vision/chiro/prescription/hospital advocacy combo pkg for $39.95/mo) covers everyone in the household whether there are 1 or 40 people and whether they are related to the initial purchaser or not.

    One example is a 20 year old young lady that goes to school full time and works part time. She was unable to get health insurance. When she went into the hospital, this company went in and negotiated her $7,540 hospital bill down to $113.

    You do have choices and help for dental and medical costs.

    John Bartlett PH: 816-389-7281

    for questions or comments

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