How to Write a Letter Asking for a Congressional Inquiry for your SSI/SSDI Disability Case

How to Write a Letter Asking for a Congressional Inquiry for your SSI/SSDI Disability Case,
Use this blog entry letter- my personal letter to then Senator Cornyn as your template


(Your Name)
(Your Address/Info)
October 10, 2009
(Your Representative's Info)

The Honorable John Cornyn
United States Senate
517 Hart Senate Office Building
Washington, DC 20510 4302

Re: Request for Congressional Inquiry for Social Security Disability SSI/Medicaid Medical Approval
Senator Cornyn (Your Senator/Representative):

(Here, write your personal letter, detailing your dilemma and your need for their assistance. No matter what be respectful and thankful in tone, and be sure to ask for what you want from them within the first paragraph.)

Hi, Thank you for your service to our great state of TX, and to your constituents, including me. I appreciate you service and consideration as you read my letter to you. My Name is Rachel, I am 29 yr old female, disabled, unable to work or drive due to severe Narcolepsy with Cataplexy, Fibromyalgia, Rheumatoid Arthritis, Chronic Lyme's Disease, Diabetes Type 2, Urinary Incontinence, and High Blood Pressure. My Social Security Number is ***-**-****. I have no income or health insurance. How am I to survive? I am writing you to request that you please file a Congressional Inquiry to the Social Security Administration in regards to my SSI Disability Claim Currently waiting indefinitely for an Administrative Law Judge Hearing. Enclosed is a completed and signed Permission slip Giving you access to my records.

I first applied for Social Security SSI in June 2004, and I was determined officially disabled by an Administrative Law Judge June 2006. I received minimal back pay for 2004 2006 suffering in poverty. However, Social Security deemed us financially ineligible since May 2006 when Kenneth became employed by the USPS because he earned a little over the gross income maximum per month limit for 2 persons to get SSI.

Ken, my husband, separated from me in April 2009, and sends me no financial support whatsoever, as he lost his job, and was even denied Unemployment Benefits. I contacted Social Security in April 2009 wanting to restart benefits, as I have NO income, am unable to work or drive. The only difference between 2006 and 2009; I am in worse health, and am even more debilitated NOW! They told me it had been 2 yrs, too long to automatically resume SSI. They are making me start ALL OVER!!! Will it take 2 more years?!! I Just got a Reconsideration Denial Notice... Here we go, Administrative Law Judge Hearing, again. Not so sure I'll make it for hearing again this time. It is ridiculous. I fear impending homelessness and am already going hungry waiting for Food Stamps. I applied in July 2009... my phone appointment to determine Food Stamp Eligibility is Oct. 22, 2009.

TX Medicaid system only will help me NOW if I get pregnant. To me, I would rather support one person, rather than them and their child they cannot afford. For me to get pregnant would be an act of stupidity/desperation due to lack of health insurance. My severe Narcolepsy with Cataplexy, Fibromyalgia, Rheumatoid Arthritis, Chronic Lyme's Disease, and Diabetes, I did NOTHING to contract. Pregnancy, except for cases of Rape/Incest is self-caused. Why only help the pregnant? Please support Medicaid Expansion to Childless TX Adults! So many Needlessly suffer, like me, and I don't want to get pregnant just to get Medicaid. I shouldn't have to.

The Social Security Disability Determination processes for SSDI and SSI are unacceptably leaving our most vulnerable citizens, including myself, to a life of poverty and needless suffering, as the applicants must wait many months, and often years, for eventual Medical Approval, according to Social Security's rules on disability.

Sincerely,
SleepyAmerican (Your Name)

To The ICU Nurses whom Laughed about my Invisible Disability

One single fact so urgently needing to be addressed are in-patient procedures, like major surgery, or many days on the hospital floor, because not only are most medical professionals clueless about the full tetrad of symptoms, the huge pendulum of severity of such, and the most important in my horrifying experience is sheer ignorance and refusal of acting timely to administer my much needed Xyrem, Effexor xr, and Provigil. The hospitals typically take 4 days on average to finally get esp. Xyrem approved. I have had two growing Hepatic Adenomas, very rare Liver Tumors very dangerous threat of causing internal hemorrhage via rupture triggered by a history of ever taking Female Synthetic, extra natural forms of Estrogen/Progesterone. Almost never turned 30, waiting to die... begging for a doctor willing to take my heath insurance.That Tumor was the size of a Cantaloupe right on my Portal veins.

I have had all kinds of surgeries, most recently was my second liver resection a year ago, and 16mo ago the birth of my daughter Savannah. I have had Narcolepsy since 2001. I always carry a detailed list of my hospital prescriptions, and a bottle of Xyrem to get approved by the hospital pharmacy asap, which still tends to take days, which leaves me in such severe sleep paralysis and Hypnagogic nightmares, and cataplexy that I seem peacefully asleep(I am not) or shaking trying to not fall from cataplexy, and fight involuntary paralysis. The Worst thing is the pain I could not escape, as I felt it all while in SP, HH, and C. Non-stop sleep limbo purgatory!

The absolute worst hospital experiences I ever had were my 2 liver resections. The Removal of Hepatica 2010 was the most horrendous experience via Medical Care in my life.  I had stopped responding,breathing, despite smelling salts, the next morning I heard my nurse loudly laughing saying Ha Ha ! "My patient has to have one Rx to wake up, and the Date Rape Drug to sleep, ROFL!" The following day, after painfully waking up trying to scream in pain in the Surgical ICU, I heard a group of nurses laughing about my Narcolepsy symptoms while watching the YouTube videos featuring Dogs experiencing cataplexy when Excited. The nurse was my nurse, "LOL I just googled videos of Narcolepsy, and lol look at these Narcoleptic Dogs fall down when happy(cataplexy)! HAHAHAHA! I may look asleep, but during cataplexy/sleep paralysis I am most often painfully aware of my environment... what I hear, feel, perhaps rarely when eyes are left open, see, but unable to move. Therefore, Though even when I was not completely paralyzed, I couldn't make a peep nor angry rebuttal in response to my two ICU nurses,  they bet wrong thinking I was unconsciously oblivious to their most unprofessional comedic amusement at my painfully aware existence and expense. We MUST Change this and Educate the entire Medical Industry to master ALL symptoms of Narcolepsy, and that the most severe narcoleptics MUST get their prescriptions to begin healing post surgery, esp. when in the Surgical ICU for 3days, no Xyrem, Effexor nor Provigil.

I was completely helpless, and Hydromorphone barely takes a bit of an edge of pain off me. Liver Resections are the most painful surgery I ever have experienced, the respirator leaves me unable to talk, make vocalizations.The seconds feel like hours.

Last year during my hospital stay of the second liver resection, they took me off ALL of my Narcolepsy with Cataplexy Medications, and being severely symptomatic, I was in status cataplectus by the 4th day. Horribly constant loops of cataplexy, Sleep paralysis, and Hypnogogic/Hypnamyoptic Hallucinations from Elm St. The fourth day my parents and my then 4mo old daughter Savannah came to visit me. After Mom laid Baby Savannah Beside me, excited I instantly went paralyzed (cataplexy) and torturous Hypnagogic Hallucinations of me causing Savannah to be hurt (fall) and Killing a paraplegic patient by knocking him on accident. Unable to move, severe sleep paralysis took over for 5hrs, and my parents raised a hissy until they got my narcolepsy and cataplexy prescriptions corrected. That fourth night, I finally got healing sleep thanks to Xyrem getting approved by the hospital pharmacy, and the doctor's Rx orders for Provigil and Effexor XR finally honored and administered.

March 2015, 5min. before going to the OR. It's always sad to go past your little family,not knowing if you will see them again, on Earth.

Something must be done to educated the entire Hospital Systems in the United States RE Narcolepsy with Cataplexy, severe patients experiences when not given meds.... always I was having sleep attacks, never awake much, I struggled to exist in the most palpably torturous pain I have ever suffered. The best was the nurse whom listened to my parents that day, the worst were the ICU nurses in 2010 laughing hysterically.  Hospital Staff and Physicians are completely unable, unaware to recognize when a patient is peacefully sleeping vs. unconsciously passed out, over sedated vs. the little-recognized narcolepsy symptoms of cataplexy, Sleep Paralysis, and Hypnagogic Hallucinations/Hypnomyoptic Hallucinations.  Torture is desperately afraid of going to sleep while not treating my narcolepsy's Cataplexy, Sleep Paralysis and Hypnagogic Hallucinations, which is ultimately futile, while feeling like every second an eternity lapsing because of severe barely numbed surgical incision pain (13in across, 7in. down).

As SleepyAmerican, leader of the Invisible Disabilities Justice League of SuperHeroes, JOIN me in educating and advocating for Hospitals, Nurses, and Doctors to humanely hospitalized Persons with Narcolepsy with Cataplexy.

I Ain't Afraid of No Joke (Sleep Doctor)

Ghostbuster's Parody Cover: ~Sleepy American has a message for those experiencing cataplexy, sleep paralysis and/or hypnagogic hallucinations: call the Sleep Doctor! Xyrem helps our favorite Sleepy Amerian BadAss Advocate for Invisibly Disabled people another day without fear of laughing! #SleepyAmericanHeroes 

Parody of 1984 Version of Ray Parker Jr.'s  Ghostbusters Theme via Sing Kings Karaoke.

Sleepy American Heroes~ Episode 1

 

SleepyAmerican leads a team of badass invisible disability advocates on #SleepyAmericanHeroes #narcolepsy #ms #LymeDisease #Fibromyalgia etc.

A Momentous Day for Sleepy American! First, Nominated WEGO Health Activist Hero 2016 #HAAwards https://awards.wegohealth.com/nominees/12337 , and the Premiere of my original web series Spotlighting persons with Invisible Disabilities as a League of SuperHeroes. #SleepyAmericanHeroes #TickTocIntheHandsofLyme

Sleepy American Nominated for Health Activist Hero via WegoHealth

  

SleepyAmerican Health Activist Hero Nominee WEGO

Thank you, I take pride in making the invisibly disabled feel validated, valuable, and vindicated. Please vote by nominating me and other deserving advocates!

A Nomination is Vote for the winner. Please Nominate me, Sleepy American if my efforts have touched your lives. You many nominate any and all deserving Health Activists! My nominee profile ishttps://awards.wegohealth.com/nominees/12337 you can nominate one for any and all award categories! Thank you, Love and light, Rach

 

WEGO Health‏@wegohealth

@sleepyamerica — Great job this year! You've been nominated for Health Activist Hero. http://bit.ly/16ZAbA4  #HAAwards

WEGO Health ‏@wegohealth  3h3 hours ago

@sleepyamerica just created their Nominee Directory Profile! Check them out: https://awards.wegohealth.com/nominees/12337  #HAAwards

Tweet it,post it,blog it,whatever you do, make sure your community nominates you! #HAAwards http://hubs.ly/H03V72F0  pic.twitter.com/jQF68HWEkb

#sleepyamericanheroes Tweets