A BUMP ON THE HEAD
      

Be aware that what I am going to say is 100% fact and it is very gruesome.  I need to tell you all of the gory details so you can totally understand what a miracle it is that I am alive today.  Brace yourself because you are about to read the true and very unusual story of my American Nightmare...

On Sunday 11/3/96, I bumped my head on the door frame of my car while exiting from the vehicle.  It stung for a few moments, I rubbed the area a little and I thought nothing else about it.  On Wednesday of that same week I started to get headaches, and a huge lump called a Hematoma (blood clot), caused by a Subgaleal Hemorrhage, formed on the back of my head between my scalp and my skull on the Occipital bone, so I starting taking Advil to try and relieve the pain.  I called my primary care doctor and was told that it would be very painful for at least a month until the blood in the clot reabsorbed back into my system.  On 11/23/96 I called my doctor again, because by this time the pain was getting worse instead of better like he said it would.  I was referred to an after-hours doctor who confirmed that I had a blood clot and then sent me home.  On 12/9/96 I saw my doctor again and by this time the blood clot had grown to a size of 6x2-1/2” and could be seen from across the room.  He then ordered a CT scan to check for a skull fracture, and ironically the blood clot didn't show up on the scan because the contrast medium wasn't ordered, and no skull fracture was found.

   

For the next month I went to the emergency room twice, was given pain killers, and sent home both times with no answers.  I had x-rays, saw a neurologist who diagnosed me with Occipital Neuralgia, went to a pain clinic where they wanted to stick needles in my head and give me THREE Occipital nerve blocks and FIVE  Stellate Ganglion blocks, saw a neurosurgeon, and visited my primary care doctor several times with no relief in sight.  I was given many different pain killers: Fiorinal, Daypro, Amitriptyline, Tylenol 3 with Codeine, Ambien, Demerol, Clonazepam, Darvoset and finally Roxicet – none of which helped to lessen the horrendous pain at all and I got allergic reactions to many of them.  I was also taking a regimen of 3 extra strength or 1 prescription Advil and alternating it with 2 extra strength Tylenol every 2 hours for over a month and even this didn’t help me. 

     

I also tried alternative medicine: Feverfew caplets which are normally taken for migraines which I have never had, Arnica topical gel, and a topical herbal mixture of St. John’s Wort oil, Arnica oil and Aloe Vera gel which had the consistency of salad dressing.  I would plaster this greasy mixture onto my head every day, which made my long hair a nightmare to look at and it had a nasty smell.

            
Photos by LJ Fullerton     

During this whole period of time, I only missed one day of work, and worked 45 hours a week even though I was not getting any sleep at all.  The never ending constant agonizing, torturous, intense pain was unlike anything I had ever experienced in my life.  There were also many different levels and types of pain (throbbing, pounding, radiating, sharp, shooting, stabbing, drilling, aching, gnawing, and electrical shock like) all happening at the same time.  On the pain scale from 1-10 I rated my pain at a 1000!  I have never been a fan of suicide, but Dr Kevorkian was looking real good at this point.  I could truly understand for the first time why someone wouldn’t want to live, if that was how the rest of their life was going to be.  I would get down on my knees literally crying and praying to God to take my life so I wouldn’t have to suffer that horrible pain anymore.  It truly felt like something was eating my brain!

          
 
On Sunday 1/12/97, I was at my boyfriend Arnold's house and having a very difficult time walking.  Every time I tried to get up I felt this horrible pressure in the back of my head almost like a huge hand was pushing my head down to the floor.  The pain in my head was extremely excruciating, more than ever, and eventually all I could do was lie down on the bed.  After that I lapsed into a coma.  The following scenario is what Arnold told me happened, while I was in the coma, since I remember nothing of the next three days.  After Arnold realized I was in trouble, he called my doctor, who told him to let me sleep and then to call him back in the morning.  Next day (Monday) Arnold called back and insisted that the doctor see me.  He then had to dress me and drag me into the doctor's office since I could not walk on my own.  If he let go of me I would have fallen on the floor, so he laid me down on the couch in the waiting room.  The doctor watched and unbelievably was cracking jokes and chuckling the whole time which made Arnold very angry.  My doctor then told Arnold that he over prescribed the dosage of tranquilizer that he told Arnold to give me.  He said that  I probably was suffering from a drug overdose and that my condition was due to the side effects of the medication.   I was very pale, my hair was all matted and I looked like "death warmed over." I should have been sent to the hospital immediately, but incredibly he told Arnold to take me back home to "sleep it off!"  He then told Arnold to call him the next day if I was not better, and to bring me back to his office 2 days later (Wednesday) for counseling!  By Tuesday morning when I still didn’t wake up, Arnold now extremely scared and furious, called the doctor’s office back over and over again explaining to the staff that it was an emergency and that I was worse, but my doctor would not even talk to him.  Arnold called back later again and demanded that I be hospitalized, and this time he also threatened to sue if they did not help me.  Finally a different doctor in the office spoke with Arnold, and he got that doctor to agree to call the hospital ER, and also an ambulance to pick me up from his house to take me to the hospital right away.  Since the two previous times I had been to the ER they failed to treat me properly, Arnold also threatened to sue them as well to get them to do the things that they should have done for me in the first place. 

             

When I arrived at the hospital Arnold talked with the neurologist that I had seen previously about what was happening and he ordered another CT scan for me, but this time the contrast medium was used. 

     

To everyone’s horror they saw a 3 centimeter white "ring" enhanced lesion (mass) in my Cerebellum, which they couldn’t identify.   I also had secondary Hydrocephalus (water on the brain - abnormal accumulation of Cerebrospinal fluid) with enlargement of my ventricular system and aqueduct.

        
LJ Fullerton - Medical Images - 1/14/97
   
At this point a neurosurgeon was called in.  He checked out the pictures, commented that he had never seen anything like this before, and said that he would need to perform brain surgery on me the next day when he could get all of his team together.  Thankfully I was in the coma because I would have said no way!  He said he was going to leave and would be back in the morning.  But after only a few minutes, he came back and said that after assessing the situation further, he would have to do emergency brain surgery on me that night instead of waiting, because he felt I wouldn’t live until the next day. 

Here comes the gory part.  The neurosurgeon then made an incision from the upper part of my Cervical spine (C2) all the way to the top of my head.  All the Paraspinal muscles that run next to and parallel to the Cervical spine were then stripped away from the back of my neck.  When he opened me up he saw that the skull bone was full of holes which contained pools of pus (infection/abcess) and it had a soft spongy texture due to the (Osteomyelitis) bone infections that had eaten it away.  He later described to me that my skull bone looked like a sheet of ice that someone had thrown rock salt on, and that had melted holes in it.  The Dura mater was markedly thickened and yellowish stained over the left Cerebral hemisphere.  He then had to perform a Suboccipital Craniectomy by cutting off all of the softened skull bone to keep the infections from spreading further.  These infections had literally eaten their way through my skull, and formed an abscess in the Cerebellum area, which ended up being the white area that had shown up in the CT scan.  So now I have no skull at the junction where my brain stem meets the top of my spinal cord.  He then inserted a needle several centimeters into my brain and removed about a tablespoon of foul looking creamy brown pus (infection/abscess) from my Cerebellum.  Then he had to cauterize (burn) about an inch of the Cerebellum hemisphere and cut into the Cerebellum to make sure that all of the infection was removed.  My brain was so swollen with fluid, the surgeon also drilled a hole in the top left side of my skull the size of a quarter and inserted a drainage tube in to relieve the fluid and pressure.  The Hematoma (blood clot) that was originally the source of my pain, had become infected with TWO DIFFERENT TYPES OF INFECTIONS - Strep (Viridens) and Coagulase-Negative Staph (Epidermidis) which ate through my skull and formed the abscesses in my skull and Cerebellum.  So that "feeling" I kept having that something was eating my brain was actually happening, it was in fact, the horrible infections literally eating my skull and brain tissue away!

                 

The Cerebellum lies in the back of the brain near the brain stem and controls balance, equilibrium, posture maintenance, fluidity of body movements, learning, memory, cognition, visual and auditory functions and is also called the "little brain."  This explains why as the infections started to invade the Cerebellum area, I started to have trouble walking among other things, before I went into the coma.  I also had balance problems and trouble walking for a few weeks after the surgery as well, and there are still other residual problems in the areas controlled by the Cerebellum that I have even to this day. 

If the doctors had only ordered a blood test early on when I was having so much pain, they would’ve seen that my platelet count was very high (Thrombocytosis) over a million (normal range is 150,000 - 450,000), and could have given me antibiotics, which may have killed the infections, and I might never have needed the horrible brain surgery.  Instead they just kept taking my temperature, which was never elevated during this whole time.  I usually don’t get a temperature when I am sick, and the all Advil and Tylenol they had me on, probably kept my temperature down as well.  The next thing I personally remember was waking up in the ICU with all kinds of tubes hanging out of me, and all my long hair was shaved off down the middle of the back of my head.  Thankfully they left the hair intact on both sides.  They closed the huge incision with metal staples so I felt like I had a zipper up the back of my head. They had me on a mixture of several different very strong antibiotics (Nafcillin, Chloramphenicol, Flagyl, Ceftriaxone, Vancomycin) for the first week because they had to make sure they killed all of the different infections.  These were so strong that they caused very nasty side effects.  After spending two weeks in the hospital they sent me home with an IV Pic line implanted in my arm and I had to administer IV Vancomycin to myself several times a day for the next month. 

       

The IV Pic line broke twice during this time, leaking the antibiotics into the tissue under my skin, which caused nasty burning and swelling in my hand, and I had to undergo two surgical IV Pic line re-implants.  I eventually developed a nasty reaction to the Vancomycin called Red Man Syndrome, was covered from head to toe with a horrible rash and had trouble breathing, so needless to say they made me stop taking it.  I hoped that it had done its work and for precautionary measures was put on a pill form of antibiotic called Biaxin instead for a few more weeks.  I also got a sinus infection and was put on Cephalexin (Keflex) to treat it but I got an allergic reaction to that as well.   By the beginning of March 2007, I felt that I might be ready to go back to work but my horror story doesn’t end here…

A few days before I was scheduled to go back to work, I started having horrible pain again in the back of my head and neck.  It started out as a mild stiffness, which increased to pain, that very quickly became unbearable.  It was very frightening, and it felt like something was now eating away at my spinal cord.  I thought that the Osteomyelitis (bone infection) was back again!  I had several doctor visits, a bone scan and other tests but they couldn’t find anything wrong with me. 

   
Image 3 - LJ Fullerton - Bone Scan

 I learned a lot from the experience that I just had, and got very proficient at surfing the Internet.  I then took my life in my own hands – you’d think after all I had been through, the doctors would finally have listened to me.  Being a woman, I find that doctors very often don’t take us seriously, and they seem to think that everything is emotional, stress, or hormone related.  Later I actually did find out that my primary care doctor was telling others who tried to treat me that he thought my pain and suffering was being caused by stress etc. and not something that was actually physically wrong with me.  Unbelievably, he also had told Arnold when I was in the coma, that he believed that all my excruciating pain was stemming from emotional causes and nothing physical in nature, yet the doctor never once admitted that to me!  I discovered on the Internet that one of the best tests to show up a bone infection is an MRI with contrast, and I insisted that they give me one immediately.  The doctors put up a fight but I was in no mood to deal with incompetence again.  I kept insisting, won the battle, and had the test.   I now saved my own life this time.   The MRI revealed that I had a very large blood clot (Thrombophlebitis) in my brain in a very dangerous area – the left internal jugular vein.  The blockage begins very close to the junction of my brain stem and spinal cord and blocks the vein up most of the left side of my head.  If the blood clot gets any bigger at this junction, if a piece of it should break off, or if the right side jugular vein should get blocked, it will kill me instantly.  It is like living every day with a bomb in your head that could explode any minute, and it is a very scary situation to have to deal with for the rest of my life.  Therefore it is no wonder I get very stressed out at times especially when I get headaches in that area.  I had to quickly make the decision to take Coumadin, which is the medical name for Warfarin (RAT POISON).  This was a tough decision because if I didn’t take the Coumadin I would die for sure, or the Coumadin could cause a deadly brain hemorrhage.  I chose the risk of taking the medicine.  As you can see, I made the right choice at the time, but eventually my brain surgeon took me off the Coumadin, after losing a patient who bled to death from a brain hemorrhage caused by the medicine.  

         

After all that I have been through, you may be wondering why I did not sue for tons of money.  I thought it best to let the New York State Medical Misconduct Board investigate, and they found my primary care physician not guilty 2 times.  I was told that they felt that my case was too unusual, and complicated with many so errors made in my care, to find him or anyone else involved, specifically to be guilty.  I am not bitter and I am using the whole ordeal as a learning experience. Hatred is the worst form of disease that anyone can have, it is very destructive, and a waste of time and energy.  I believe with my whole heart and soul that it is very important for my story to be heard by as many people as possible, especially women who are dying by the day, because doctors don’t take their medical problems seriously enough. I have heard many horror stories since this has happened to me, and people need to know that they must start taking charge of their own lives and healthcare.  If they are too sick to do it themselves they must appoint someone they trust to be an advocate for them. If Arnold was not there, I would be dead, and if I didn’t take charge when I was functional, I would have been dead a second time! 

Remember that nobody knows your own body better than you do, and it is perfectly OK to disagree with your doctor, get a second opinion, refuse treatment if you feel the risks or side effects outweigh the benefits, or switch doctors.  Also ALWAYS get copies of your medical records every time you see a doctor, have a test, or medical procedure.  It is your right to have your own medical records and don't take no for an answer. 

HIPPA Clearly Gives You The Right To Get Your Medical Records

Getting Your Medical Records: Information On Rights, Procedures, And Denials

What should I do if my doctor does not give me access to my records?

You are a customer, and you're paying your doctor, hospital or other medical facility for a service just like anything else that you buy.  Your medical records are a part of your receipt for those services.  You will be shocked at the mistakes you may catch, that if you didn't get the records, could jeopardize your life.  You will learn things about your body and medical conditions that you should know, that the doctors may write down in your records, but never actually tell you about.  It is also very important to create your own medical records as well, that contain a listing of your emergency contacts, and contact info for all of your treating physicians.  List all medications and supplements that you take, the dosages, how often you take them and what you take them for.  List all allergies including medication, food and other items.  List all physical and mental conditions that you currently have, and have had in the past.  List all surgeries and other important medical procedures that you have had.  Update these records each time you take a new medication, have a new medical condition, treatment, test done, or get a new doctor.  Each time you see your treating physicians, bring the updated list with you and write down any questions and problems you need to talk with the doctor about, and also write down any medications that you may need refills for.  Also bring the list with you whenever you go the hospital or have a medical procedure performed.  Keep a medical diary as well, of the different problems that you have between doctor's visits.  If you have a chronic issue write down the date and time of day that the problem re-occurs.  If you have physical issues and symptoms that can be seen, take pictures of what is going on with your body to show the doctor.  It may not be serious enough to warrant a visit, and the symptoms may go away before you actually see the doctor, but it is worth it for them to see the pictures to be able to treat you properly.  Since you are always going to be getting copies of your medical records, make sure ALL your different doctors have ALL your records too, and don't hesitate to make copies to share with them.  Often doctors do not communicate with each other, or do not get copies of your test results like they should, and they may be missing vital information that they need to treat you properly.  I have so many medical conditions that I have a whole team of doctors who I see on a regular basis, and I can tell you for a fact that they greatly appreciate all of the information that I provide all of them. 

It is also very important to create a Living Will or Advanced Health Care Directive, designate someone to be your Health Care Proxy, and make sure that all your doctors get copies of those documents as well.  While there is a major push to have all electronic medical records, computers do not work at all times and at least if you have your own paper copies that you can bring with you, there will always be a way for doctors to have the information they need in case of an emergency. 

           

Also make up business size, folding, in case of emergency cards, with emergency contacts and doctors listings, medications, allergies and major medical conditions that you have. Make one to carry on yourself, one to keep in your purse or wallet, and one to keep in your car in case of an accident.  If you do all of these things, it will save both you and your doctor time at office visits, and ensure that all of your doctors know everything they need to know about you at all times, in order for you to get the best health care possible, that your rights are protected, and your wishes will be carried out properly.

Emergency Card Template

THE HORROR STORY CONTINUES - PART 2

For 30 years of my life, I contributed to the Social Security trust fund as many millions of people do every day.  I never expected to have to use those benefits until I was old enough to retire.  Unfortunately in December of 2001 when I became totally and permanently disabled, and no longer able to work, I applied for Social Security Disability Insurance (SSDI) which I assumed would be there to help me in my time of need. I had heard nothing but discouraging stories from others but figured every case was different and anyone with the laundry list of illnesses that I had would surely be able to get the help that they needed. I was sorely mistaken and the following is what I discovered in the process.  

          

Social Security Disability (SSDI), is an insurance plan administered by the Federal Government that is paid for by FICA and SECA Tax deductions out of American's hard earned paychecks. 

 

What are FICA and SECA taxes?

Social Security Disability Insurance/SSDI is exactly what the name says - it is an INSURANCE policy.  The only difference is you pay the premiums out of your paycheck directly and it is administered by the Federal Government and not a private company.  It is no different than health, life, auto, home or any other insurance policies that you pay for, and there is no guilt or shame involved if you ever file a claim for any of those forms of insurance.  You should not ever feel ashamed if you have to use SSDI, and anyone who tries to shame you is absolutely wrong, and don't let them upset you - just ignore them!  They should refrain from making inaccurate comments about things that they clearly do not understand, and they should educate themselves about this insurance instead, because one day they may need it too.  Yet, often SS Disability claimants are treated like criminals – viewed as frauds trying to scam the government, and that the SSA must “weed out” by making it as hard as possible for them to get their benefits.  The percentage of claims that in fact, aren’t legitimate is very miniscule, but many are forced to suffer unnecessarily because of the bad behaviors of a few.  In our country you’re required to have auto insurance in order to drive a car, you pay for health insurance, home and life insurance etc.  If you filed a claim against any of these policies, after making your payments, and the insurance company tried to deny you coverage when you had a legitimate claim, you would be doing whatever it took, even suing, to make them honor your policy.  Yet the Federal government is wrongfully denying Americans their right to legitimate SSDI benefits every day, and you should be outraged!

    

FACT - "Social Security Disability Insurance is coverage that workers earn - Social Security Disability is a social insurance program under which workers earn coverage for benefits, by working and paying Social Security taxes on their earnings.  The program provides benefits to disabled workers and to their dependents."

Source - Social Security Administration

There is a huge shameful scandal involving this program that most Americans know nothing about unless they need to apply for this benefit themselves.  This insurance is supposed to be a safety net for millions of disabled Americans, but because of continued program problems, the process of getting SSDI benefits can cause devastating, irreversible harm to your health and financial well-being, and it affects every aspect of a claimant’s life. I know this for a fact because it happened to me!  The application process to get SSDI benefits often exacerbates/creates new health issues, and many people lose all their financial resources, their homes, even their lives while waiting for approval of their claims.  If you don’t suffer from depression before applying for benefits, chances are you will, in fact many contemplate or attempt suicide. 

             
 
While the majority of Americans were shocked at the reaction of the Federal government in the aftermath of hurricane Katrina, at how the poor and disabled were left to die in the streets when they needed help the most, I wasn’t surprised at all.  Nowhere is this more evident, yet rarely mentioned, than in the way that the SSDI claims process has been systematically destroying disabled Americans lives for decades, and Congress as a whole has failed miserably to do anything about it.  I shudder to think of how many more lives will be further ruined or lost, when the mentally and physically disabled victims of other natural disasters, 9/11 victims who survived that day, but are now disabled and facing a similar fate, and the other disabled Americans in general, encounter their next experience with the Federal government as they apply for SSDI.  Also nothing is heard about the Veterans who are injured in the line of duty and have to go through this same cumbersome process to get their benefits too.  There are many cases of Veterans rated 100% disabled by the VA who get denied their Social Security Disability benefits and end up living in poverty on the streets.  Horrible treatment for those who protect and serve our country.  SSDI claimants are often treated as “disposable” or "invisible" citizens, and yet their horror stories of poverty, homelessness, destruction and death at the hands of the Federal government, never make the news. 

Millions of people across the country become disabled unexpectedly (over 34 million people since the year 2000 have applied for Social Security Disability Insurance – over 300,000 file annually in NYS alone). 



I find it incredulous that the Federal government has done almost nothing to initiate reform of a system that is wreaking havoc on the weakest citizens of this nation.  Our elected officials obviously don’t care, since this is how they can keep your money from you, in order to use it for “pork barrel” spending, catering to corporations and special interest groups, investment in other countries, financing wars, or outer space travel while the disabled are suffering and dying here at home, and to date their cries for help have continually been ignored. 

       

Over 67% of SSDI claims are denied at the initial filing for benefits and it can take up to 1153 days (3-1/4 years) or longer for a claim to be processed if it’s denied at every level which often occurs and the waiting time continues to increase.  Ask yourself how long could you survive without an income if you had to wait to get the help you might need in this situation.

Social Security Average Wait Time Until Hearing Held Report

Social Security Hearing Office Workload Data

Social Security ALJ Disposition Data

Social Security Appeals Council Requests For Review

SSDI Facts

After filling out several pages of paperwork, which I was told was greatly reduced from what it had originally been, and submitting a huge stack of medical records supporting my SSDI claim, I was told that it would take at least 4-6 months to go through the initial process. 

     
   
I was shocked and asked the caseworker at the SSA what I was supposed to live on, and was told to apply for social services (Medicaid, food stamps and cash assistance) while my claim was being reviewed.  I did just that but was denied any help based on the cash value of my life insurance policy, which is not even enough to bury me when I die.  Due to all my illnesses if I cashed in that policy I would never be able to get life insurance again!  That process and paperwork was also very difficult and humiliating, and then to be denied any help, just added even more to my stress.

Often SSDI applicants are forced into poverty while waiting for their claims to be processed, and many (like I was told to do) have to apply for other state funded programs such as Medicaid, food stamps and cash assistance, who wouldn’t have needed them, if their disability claims were approved in a timely manner.  Another very stressful demeaning process to say the least. This causes an enormous burden across this nation, on those state Social Service programs.  This problem would be greatly reduced if the Federal SSDI/SSI program was fixed, and the states would definitely reap the benefits in the long run.  If a healthy person files for Social Service programs and then gets a job, they do not have to reimburse the state once they find a job, for the funds they were given while looking for work.  Yet, the disabled who file for state Social Services assistance while waiting to get SSDI benefits in many states, have to pay back the state out of their meager disability benefits once approved, in most cases keeping them below the poverty level and forcing them to continue to use state funded services for the rest of their lives in addition to the Federal program.  They are almost never able recover or better themselves, since they can no longer work.  This practice of pay back to the states out of SSDI retro benefits is discrimination against the disabled, and needs to be eliminated. 

I was hoping beyond hope that my SSDI claim would be processed and accepted but on 4/25/02, I got the incredible news that my claim had been denied!  I filed for an appeal, had to go through an even more complicated process, and was told it would be at least August  of 2003 before I even got a hearing if I didn't die first - where is the justice?  I also discovered that the Social Security Disability claims process is currently structured in a way that claimants often give up or die, trying to get their benefits.  It is common knowledge on the streets and in legal circles that it is RARE if anyone gets accepted the first time they apply, and the claims process is set up to discourage everyone, even those who feel brave enough to tackle the system.  I cannot understand how it is possible that anyone could read about all the medical problems I have, and it not be totally transparent that I should qualify for benefits.  I had heard too many horror stories in waiting rooms and other places I’d been, of people who lost everything, were in homeless shelters, totally bankrupt, no health insurance, and still having to deal with the stress of their illnesses.  I know first-hand what they meant now.  Something is extremely wrong when you have to deal with the pain and suffering physically and mentally that comes along with the illnesses you have, and then have to struggle so hard to get the benefits that you have worked for all your life.  The SSDI claims process is also set up to line the pockets of the legal system, as you are encouraged from the minute you apply to get a lawyer.  Why should you need to pay a lawyer to get benefits that you have already earned?  It is built into the claims process that is in a lawyer’s best interest for your case to drag on since they get paid 25 percent or several thousand dollars of a claimant’s retro pay, so the longer it takes to process a claim, the more they get.  It is an automatic disincentive for them to help speed up your claim.  This is highway robbery without the ski mask and gun and this travesty needs to change immediately!  Instead the SSA should provide claimants with a listing in every state, of FREE Social Security Disability advocates/reps when a claim is originally filed in case their services may be needed.

          

I didn't know at the time what constituted a dire needs case in the eyes of the Social Security Administration, but I should think that not being able to afford health insurance, medicine, other necessities of life, and wiping out all your financial resources when you have no income at all because of your inability to work, is a dire need, but nothing could be farther from the truth!  All my incurable diseases got worse with each day that went by, due to the ever increasing stressful conditions I had to live under - yet that was not even considered a dire need!  Worsening health doesn’t seem to be a factor in speeding up SSDI claims, as there are several reported cases of people who have died while waiting to get their benefits.  I found out after, that a dire needs case in the eyes of the SSA means that you have to prove in writing, that you are going to have your home foreclosed on, be evicted from your apartment or have your utilities shut off.  But often times the SSA even ignores that criteria as well since so many people are forced into that situation now because of the long delays.  I have been told more horror stories over the years than I can count, of those who have met the dire needs criteria, but still lost everything because the SSA ignored their dire situation, and took too long to process their claim.  Nobody should ever have to deal with that sort of thing when they are sick!  This is outrageous when something this serious, and a matter of life and death, could be handled in such a poor manner.  No other company or other government organization that I know of operates with such horrible turnaround times.  If any other corporation in this country did business this way, the majority of employees would be fired on the spot, and the company would be shut down within a year, yet these problems have been growing worse for decades.

        

Congressional offices in many cases contact Social Security on behalf their constituents going through the SSDI claims process, so they must be aware that there are so many problems.  I wrote to ALL my elected officials including three NY state senators, my Congresswoman, my Assemblyman, the attorney general, the Governor, the President, Vice President, and various other members of Congress with little or no response.  As a registered voter myself, I was very disappointed, disillusioned, and disgusted that my elected officials whom I have supported in the polls every year, when I asked for help in my own particular case, that the very few who responded at all, said that I needed to be become homeless or have my utilities shut off before they could help me, and there was nothing else they could do to expedite my claim.  It was totally appalling and unacceptable to me, that never once, did they say that they would do anything to try and correct the flaws in the system that cause the horrors we SSDI/SSI applicants face.  The bi-partisan apathy in regards to this issue is not only unacceptable, but criminally negligent behavior, and our elected officials need to be held accountable for it.  We elected them, trusting that they would protect, serve, and be there for us in our time of need.  I am sad to say they have failed miserably at their jobs, doing us a grave injustice in this area.  They need to stop the abuse being committed against their constituents at the hands of the government and fix the major corruption of this Federal program now.  Time is of the utmost importance in this matter, as millions of SS Disability applicants, even as I write this, are suffering and losing everything, including their lives, while trying to get their benefits.  Only Congress with your urging can get the funding and create the legislation needed to address this crisis.  



The blood clot in my brain and worsening financial situation kept me from taking the medicines and seeing doctors that could help me deal with this horrible existence.  I didn’t ask for this fate and would trade places with a healthy person in a minute.  I then did some research and found out that I could request copies of the reports of the SSD IME doctor I was sent to, and the notes of the original DDS claim examiner that denied me, and when I received them, my worst allegations were then confirmed.  In desperation I contacted all my elected officials, and had to fax the SSA hearing office copies of their own laws when they tried to violate my rights under Federal Law, (Freedom of Information/Privacy Act) when I requested copies of what was in my Social Security file.  Once I received my SSDI file, I discovered that the NYS DDS claim examiner purposely manipulated my medical diagnoses on the SSA form to deny my claim. Even though I filed my disability claim based on all of the physical problems I have, as a PRIMARY diagnosis for disability, the DDS examiner purposely wrote depression as a primary diagnosis instead of as secondary one, so of course I would be denied based on that as a primary diagnosis.  This was after I had already submitted tons of documents to prove my PHYSICAL disabilities – reports/documents that he chose to ignore.  Even though I have no real neurological problems Social Security sent me to a neurologist to examine me, so of course he would find nothing wrong with me and say that I did not qualify as disabled.  I should have instead, been sent to a Rheumatologist since most of my problems are caused by the numerous autoimmune disorders that I have.  I also filed a formal willful misconduct complaint against the NYS DDS office, the Social Security Office of Public Inquiries and the Inspector General’s office in MD.  In April 2003, I requested an immediate pre-hearing review of my case on the grounds of misconduct and additional physical evidence.  Again I had to fax copies of the regulations on what pre-hearing reviews were, since the people at the SSA Office of Hearings and Appeals in my state, had no clue what I was asking for.  Once they got all my paperwork to request the review, a senior staff attorney, and then an ALJ (Administrative Law Judge) granted my request, and then my case was sent back to the DDS office that originally denied my claim. 



Finally it was seen by a different NYS DDS person who actually knew how to do their job.  In two weeks my case was approved at the DDS level and then was selected randomly by computer (7 out of every 10 cases get chosen) for Federal review.  It then took another three weeks to be processed there.  Finally one month before I lost everything – becoming bankrupt, homeless, losing my health insurance and everything I worked for all my life, I was approved for my SSDI benefits.  It took 1-1/2 years (12/6/01 to 6/6/03) and I did it on my own without a lawyer.

ATTN:  WHAT THE GOVERNMENT DOESN’T WANT YOU TO KNOW CAN HURT YOU!!! – READ MORE:
SOCIAL SECURITY DISABILITY NIGHTMARE – IT COULD HAPPEN TO YOU!!!

THE HORROR STORY CONTINUES - UPDATE 2015 - PART 3

Due to the enormous wait to get my SSDI claim approved, I had to wipe out all of my very meager life savings and live off my pension from a previous employer which is totally gone now.  All the SSDI retro pay is gone now too – used to pay off debts incurred while waiting for approval of my benefits, which are nowhere near enough to live on for the rest of my life.  Under Federal law, there’s a five month benefit waiting period, and five months of back money withheld, which I will never see again.  SSDI recipients must also wait another 24 months, in addition to the 5 month waiting period from disability date of eligibility (the date that SS determines that you were officially disabled) in order to qualify for Medicare benefits.  As a result I didn’t become eligible for Medicare until June 2004, having to spend over half of my SSDI check each month on health insurance premiums and prescriptions, not including the additional co-pays and fees on top of it.

For some unknown reason people are under the mistaken notion, that once a person is finally approved for their SSDI/SSI benefits, that everything will be fine, and their life will suddenly return to “normal.”  Sadly the opposite is the reality of what the majority of the disabled have to deal with, since the devastation as the result of the SSDI/SSI claims process, often leaves permanent scars on their lives as it did mine, from which they are never able to recover.  Plus there is always the stress of having to deal with the SSA Continuing Disability Review Process every few years, where the threat of having your benefits suddenly cut off constantly hangs over your head. 

Since my brain surgery in 1997, I take an aspirin a day and pray as my only treatment for the huge blood clot in my brain.  I was diagnosed in 2007, with an En Plaque Meningioma (brain tumor along the tip of right temporal lobe) growing on the surface of my brain, behind my right eye.  Due to my medical history, the shape and location of the tumor, any further treatment is not feasible at this time, so my brain surgeon monitors it with MRI’s as needed.  There is also Encephalomalacia (softening of brain tissue), Gliosis and tissue loss in the posterior left Cerebellum area.  I also now suffer from several incurable autoimmune disorders including: Scleroderma, Raynaud’s Disease, Rheumatoid Arthritis, Fibromyalgia, Calcinosis, Sjogren’s, Telangiectasias, Hashimoto’s Thyroiditis, which are attacking all the other parts of my body.  I was hospitalized again in the Spring of 2001, from what I thought was a heart attack, but was ruled to be a result of my autoimmune system attacking my esophagus, causing severe pain and esophageal reflux disease. Scleroderma is a collagen disease, which in its extreme form hardens tissues and vital organs throughout the body and eventually kills you. The worsening Rheumatoid Arthritis causes fatigue and lots of pain in the joints throughout the whole body, and Fibromyalgia causes major fatigue and pain in the muscle tissues and nervous system.  The Calcinosis has caused very painful stone like calcium deposits to form on my joints and fingers.  As my Raynaud’s disease worsens each year I face the real possibility of hand/arm – foot/leg amputations, and damage to my internal organs as well, and I suffer from very painful ulcerations all over my fingers, which I endure for weeks at a time until they heal, only to recur again later.  The only medicine I can take to try and reduce the symptoms does not help much at all.  In July 2004 I had surgery to remove stage one melanoma skin cancer.  I have severe neck, spine and back pain, numbness, tingling and pain in my arms, hands and feet, Osteopenia of the hips, Osteophytes in both knees, and Plantar Fasciitis and Gout in my feet which makes it painful to stand or walk. 

            
Photos by LJ Fullerton & Actual X-Rays - Raynaud's Disease Finger Ulcers, Calcinosis - Fingers & Elbow, Bony Island - Left Wrist, Osteoarthritis - Both Knees

I have severe headaches and nosebleeds, memory loss, inability to sleep or concentrate, anxiety and situational depression as the result of all my health problems and worsening financial situation.  I have very severe anemia to the point where I have needed IV iron infusions, more than once and in fact I need them again.  They make my irritable bowel symptoms even worse, but there is nothing else I can take or do to try and treat the anemia, and because the iron infusions are very expensive it takes a long time to save up the money so I try to put off treatment as long as possible.  I also discovered that I have Celiac disease – allergies to Gluten/Gliadin, wheat, rye, oats, barley, malt, maltodextrin, whey, wheat starch, modified food starch, bran, orally ingested grain alcohol, and  Diverticulosis so I must also avoid all nuts, kernels, seeds etc.  I must read all labels on any food that I purchase/eat and any medicines that I take and anything that I can eat/take now is often very expensive.  A British study in 2011 found that the prices of gluten free foods ranged between 76% - 518% more than foods that contained gluten.  Besides the outrageous prices, and since many gluten free items involve a great deal of time and effort to prepare them, I often skip meals.  This has made an already severely compromised lifestyle even more unbearable.  Since my body is under so much stress I have frequent very painful Shingles attacks.  In addition I have Osteoarthritis, Degenerative Disc and Joint Disease, TMJ/TMD and way too many more health issues to list here, which fill 2 pages of 8x10” paper single spaced. Literally every bit of my body hurts and is under attack by my immune system.  On a scale of 1 - 10 my pain levels every day are at least 12 or higher.  I have many different types and forms of chronic, constant pain (Somatic, Neuropathic, Visceral, Myofascial).   Each day that passes the diseases get progressively worse and the pains increase and intensify as my body breaks down. 

                

Since there is no cure for any of these diseases, I just live each day as if it will be my last, making the most of every second that I have. To learn more about some of the various diseases I have, check out the following websites:
EN PLAQUE MENINGIOMA
RAYNAUD’S DISEASE 
CALCINOSIS  
FIBROMYALGIA 
RHEUMATOID ARTHRITIS
OSTEOARTHRITIS
GOUT
ANEMIA
SJOGREN’S SYNDROME 
HASHIMOTO’S THYROIDITIS  
CELIAC DISEASE 
TELANGIECTASIA 
SHINGLES 
IRRITABLE BOWEL SYNDROME 
DIVERTICULOSIS
AUTOIMMUNE DISORDERS

The strange thing is, that if you saw me, you may never know how sick I really am, since many of my illnesses are “invisible” and the severe damage that many of them cause, is on the inside of my body.  One of the reasons I am sharing my story is in hopes to educate the general public, healthcare professionals and government officials about the effects of living with diseases that are not visually apparent.  It will help the public learn about how often illness is invisible, how to be sensitive to a person who faces these challenges, and also learn from their unique experiences.  Despite the fact that the majority of the US population looks rather healthy, these staggering statistics show a different story:

Nearly 1 in 2 (133 million) Americans live with a chronic condition.  This could be an illness like cancer or rheumatoid arthritis, or a condition such as arthritis, migraines or back pain from a car accident.  When studies are done about people with illnesses and disabilities, those who deal with chronic pain on a regular basis, but have not yet been diagnosed are often overlooked.

If it's not you, it's someone you love.  That number is projected to increase by more than one percent per year by 2030, resulting in an estimated chronically ill population of 171 million.

96% of illness is invisible and 60% of the people are between the ages of 18 and 64

Depression is 15-20% higher for the chronically ill than for the average person

Various studies have reported that physical illness or uncontrollable physical pain are major factors in up to 70% of suicides, and more than 50% of these suicidal patients were under 35 years of age

The divorce rate among the chronically ill is over 75%

90% of seniors have at least one chronic disease and 77% have two or more chronic diseases

Four in five health care dollars (78%) are spent on behalf of people with chronic conditions

20.6% of the population, about 54 million people, have some level of disability

9.9% (26 million people) had a severe disability, yet only 7 million persons used a visible device for mobility. Thus, 19 million of the people who were defined as severely disabled, did not use a wheelchair, cane, crutches or walkers. In other words, 73% of Americans with severe disabilities do not use such devices.  Therefore, a disability cannot be determined solely on whether or not a person uses visible assistive equipment.

Who Hates to Hear They Look Great? Over Half of the Chronically Ill! - San Diego – August 2007 — In a recent survey of 611 chronically ill individuals, done by the National Invisible Chronic Illness Awareness Week committee, 53.27% of the respondents said that the most frustrating or annoying comment people make about their illness is “But you look so good!”  Respondents answered the survey at www.invisbleillness.com and reported the following other annoying comments people tend to make:

“Your illness is caused by stress.” (14.22%)

“If you stopped thinking about it and went back to work.” (12.42%)

“You can’t be in that much pain. Maybe you just want attention.” (10.95%)

Living with a chronic illness is extremely difficult, as it impacts everything about one's life - the daily schedule, ability to work or participate in fun activities, as well as the financial burdens. Trying to be a parent or grandparent, spouse and child also adds to the challenges. On top of that, is the emotional struggle. The ability to face each day in significant pain, while both loved ones and strangers believe that you aren't "feeling that bad" or just need to "get over it" can be heartbreaking. The feeling of "no one understands" paired up with people's skepticism can be devastating and many people spiral into deep depression.

Note: Used with permission granted by Lisa Copen – Invisible Illness Awareness Week - Founder & Coordinator

The source for these statistics and information on “invisible illness” can be found here:

Invisible Illness Awareness Week

It is also important to remember that if anyone mistakenly tries to pass judgement on you if you are disabled, or before you mistakenly try to pass judgement on others who are receiving Social Security Disability Insurance - STOP and know this:

FACT:  Because the Social Security Act defines disability so strictly, "Social Security Disability beneficiaries are among the most severely impaired in the country. In fact, Social Security disability beneficiaries are more than three times as likely to die in a year as other people the same age. Among those who start receiving disability benefits at the age of 55, 1-in-5 men and 1-in-7 women die within five years of the onset of their disabilities."

Source - Social Security Administration

My “American Dream” has now turned into the “American Nightmare” through no fault of my own. 

        

I will never, short of a miracle, or winning the lottery, be able to recover from the financial, emotional, physically permanent damage that this experience has had on my life.  I will never be able to afford to live in a safe, universally designed, handicapped accessible, allergen free environment, which is imperative for a person who has all of the autoimmune conditions that I do.  Again, there’s no cure for any of my illnesses, which are continually getting worse, especially due to the ever increasing stressful conditions and worsening financial situation I have to live under.   Every day I fight two battles - one to stay alive physically and one to survive financially.  These conditions continue to keep me in an endless cycle of poverty, and nobody in their right mind would willingly choose this horrible existence.  I always face the looming threat of bankruptcy and homelessness, due to the rising cost of healthcare, and basic living expenses, and I have never qualified for any public assistance programs.  I am seeing doctors or having tests now every month and sometimes several times in a month.  Health insurance premiums keep rising every year, along with the medical co-pays for medicines and doctor's visits which add up very quickly.  Whenever appliances or anything else breaks down, I cannot afford a replacement so I have to do without it.  My car which is over 18 years old now, is a major source of worry and stress for me, and it is the only mode of transportation I have to get to my doctor appointments etc.  Things by nature are starting to wear out on my car, and it is too costly to repair - much more than the car is worth.  Also pieces of my vehicle keep rusting and falling off all the time especially underneath the vehicle which causes it to leak fluids such as gas, power steering fluid, and oil to name a few.  The air conditioner in it is also broken so it becomes impossible to breathe as I always have to keep the windows rolled up due to allergy and safety concerns.  It is quickly becoming too dangerous for me to drive it, because if the car breaks down out on the road it could literally be deadly for me especially in the winter.  Due to my health issues I cannot use public transportation, and my community greatly lacks quality affordable alternatives so when my car finally goes, which could be any day now, I am in serious trouble!  I worked hard all my life and was always a very independent person.  It is a continued source of frustration for me now, that when something breaks down, I do not have the ability to earn a paycheck since I am so sick, and I will never be able to afford to replace it.  The enormous stress of having to deal with these things every day is definitely killing me! 

               

       
Photos by LJ Fullerton

Social Security Disability Insurance/SSDI is not welfare, a hand out, reward, golden parachute or jackpot by any means, and most people would be hard pressed to survive on it.  According to the US Census Bureau in 2014 the weighted average poverty threshold for individuals under 65 was $15,933. In 2015, the average monthly Social Security Disability Insurance (SSDI) benefit was only $1165.23 (month) or $13,982.76 (year).  Social Security cost of living adjustments (COLA) over the years have been minimal at best and in some years there have been no increases at all.  This makes it extremely difficult for those on SS Disability to survive.  Nobody in their right mind would want to go through this process, and end up living in poverty on top of their illnesses, if they could in fact work.

Social Security Benefits Paid By Type Of Beneficiary

SSA - Latest Cost Of Living Adjustments (COLA)

SSA - Effect Of Cola On Average Social Security Benefits

 Ask yourself what's wrong with this picture:

Example - In 2014 New York City paid $208, 513 to feed, house and guard each prison inmate

Source - Vera Institute Of Justice



Yet many upstanding, innocent, disabled and elderly citizens in this country who are often targeted victims of crimes or scams are sentenced to live in poverty for the rest of their lives.  Your tax dollars are going to pay for a criminal's living expenses, yet the government too often refuses to adequately help those who are truly in need.

As a result of my devastating life altering experiences I have become an advocate for the disabled and poor.  Keep in mind a country is only as strong as the citizens that live there, yet as you can now see, the Social Security Disability claims process preys on the weak, and decimates the disabled population even further.  As I mentioned before, I know first-hand about the pain and poverty that this problematic system can cause.  I am using what I learned from my experience with the SSDI program, to help those still struggling get their benefits by sharing information, and trying to get legislative reform of this important insurance program.  Rather than be angry at the SSA I reached out to them instead, and over the years I've encountered several wonderful people who have given me great information that I have been able to use to educate others.  I have also given the SSA direct feedback on things that need to be changed, some of which, but clearly not enough, have actually become a reality.  To draw attention to the Social Security Disability Insurance program and its flaws I have written various essays including “Social Security: The Hidden Dangers of Privatization.”  I don’t want anyone else to suffer the hell that I endure on a daily basis.  I am President/Co-Founder of the Social Security Disability Coalition and I have also authored the Social Security Disability Reform Petition which was been seen by members of Congress, the media and the Social Security Administration itself.  I hope to one day achieve the goal of complete reform of the SSDI claims process and the SSDI program.  In July of 2004, the SSD Coalition made the Center for Disability Rights (CDR) - Rochester Annual Disability Rights Top 10 List, and in 2009 the DisabilityNetwork gave the SSD Coalition an outstanding website award for our MSN Groups website before Microsoft stopped hosting groups. 

I have written a proposal for Congressional legislation titled the Fullerton – Edwards Social Security Disability Reform Act.  I have been fighting so long and hard for these changes, and I only hope that I can live long enough to see that all of my proposals get adopted into law.  A personal goal of mine was to one day speak before Congress, to raise the awareness of this crisis situation, but due to my rapidly deteriorating health that is never going to happen now.  Instead I have submitted written testimony for the record several times to the House Ways And Means Committee hearings on various Social Security related issues.  I was also the source behind a two part CBS News Investigation that revealed how many individuals who are disabled, were either being rejected or waiting years for a decision on benefits, which aired on 1/14/08 exactly 11 years to the day after I had my brain surgery.  I guess that must be one of the reasons I survived my whole ordeal.

CBS Evening News - Disabled And Waiting - Part 1 - 1/14/08

CBS Evening News - Failing The Disabled - Part 2 - 1/15/08

 I suggest that together the SSA and Congress immediately set up a task force made up of disability claimants who have actually gone through the SSDI program, and that has major input and influence on the SSDI claims decision making process and program, before any final decisions/changes/laws are instituted by the SSA Commissioner or members of Congress.  This is absolutely necessary, since nobody knows better about the flaws in the system and possible solutions to those problems, then those who are forced to go through it and deal with the consequences when it does not function properly.   As if things are not already bad enough, they always get even worse, as the SSA continually faces budget problems, employee layoffs, and office closings, just as the growing numbers of disabled/aging Americans need their services more than ever.  Congress also needs to legislate that Social Security funds cannot be used for anything other than to pay out benefits and administer the program.  It is crucial that you also contact your Congressional representatives on this very important issue.

Remember that disease and tragedy do not discriminate on the basis of age, sex, or race, and your life could totally change for the worse in an instant without warning.  At any moment you too could become disabled yourself due to an unfortunate illness, accident, natural disaster, vicious criminal act, military service or work injury, or even a terrorist attack.

            
 
If you think this could not happen to you – you could be DEAD wrong! 



I alert you to the case of a friend of mine Dane Edwards, who applied for Social Security Disability benefits in October 2006, because of terminal lung and brain cancer.  When he’d call to check on the status of his SSDI claim he was told that he must wait like everyone else, and that he should stop calling to inquire about the status.   He obviously didn’t have the luxury of time.  Dane will no longer be calling and he never received his benefits.  The last precious, few months of his life were spent in anger and frustration, fighting a system, which in the end failed him miserably.  He was 53 years old when he died on February 13, 2007 - his Social Security Disability claim still waiting for approval.  Unfortunately I must report that stories like his are becoming more and more common.

FACT - "Disability is unpredictable and can happen to anyone at any age - 56 million Americans, or 1-in-5, live with disabilities. Thirty-eight million disabled Americans, or 1-in-10, live with severe disabilities. Disability is something many Americans, especially younger people, think can only affect the lives of other people. Tragically, thousands of young people are seriously injured or killed, often as the result of traumatic events. Many serious medical conditions, such as cancer or mental illness, can affect the young as well as the elderly. The sobering fact for 20-year-olds, insured for disability benefits, is that more than 1-in-4 of them becomes disabled before reaching retirement age. As a result, they may need to rely on the Social Security disability benefits for income support."

Source - Social Security Administration

"Approximately every 7 seconds, a working-age American suffers a disabling injury or illness that will last for at least one month"

Source - America's Disability Counter - DisabilityCounter.org

"Over 25 million lives are restricted by the effects of disability according to the Centers for Disease Control and Prevention"

"More than 30 million Americans between the ages of 21 and 64 are disabled, according to the most recent U.S. census."

Source - Council for Disability Awareness

What are YOUR chances of of not being able to earn an income?  That possibility is greater than you ever could have imagined.  Here is an easy way to find out what your own personal disability quotient (PDQ) is and discover what's really at stake:

Calculate your PDQ
 
Disability Awareness Quiz

To get more of the latest disability statistics check out the following:

DisabilityCounter.org

Council for Disability Awareness - DisabilityCanHappen.org

Selected Data From Social Security's Disability Program

Facts And Figures About Social Security

If you or someone you know needs to file for Social Security Disability Insurance contact the Social Security Administration via phone at 1-800-772-1213 or visit their website:

Social Security Administration - Disability

Also, because of my parent's horrible experiences with both the health care and legal systems which failed them miserably, and destroyed both of their lives, I have become an advocate for the elderly as well. 

Another one of my goals was to make Rochester NY a place that would be highly recognized by the music industry and the rest of the country so that our local talent did not feel the need to leave here in order to “make it” in the entertainment field. We have tons of amazing musicians here, that are unknown to the rest of the world.  I hoped to create a community where musicians could live and work in an environment that is supportive of their art, and where they could live comfortably off of doing what they love best - which is making music.  I came up with a plan using music to revitalize my city known as the “Musical Cycle of Economic Development” and I am President/Founder of an organization which was created before I became so ill, known as the Rochester Music Coalition.  I also recorded a CD in the year 2000 called Timeless, which is a musical commentary on the violence that has gripped our nation.  It contains an original song which I wrote with my cousin called Columbine 99.  I wrote a poem entitled "Forever Changed" about the WTC Attack on 9/11/01, “Gone In An Instant” about the Space Shuttle Columbia tragedy, and an essay called "Suffering For Their Art" a commentary on the need for a supportive music community in my hometown.  I have been in the process of writing a book for many years now about the things that have happened to me before and after my life changing surgery. 

In spite of everything, I do not want pity or sympathy for what has happened in my life, just compassion, empathy and understanding, which is what I believe most people who are having tough times want.  Over the years despite a very few glimpses of kindness stories that I have seen or heard, I am continually saddened, discouraged, frustrated and worse yet horrified, at the rude, abusive, mean spirited and negative treatment by individuals who greatly lack in knowledge, empathy, compassion and understanding of what the disabled and elderly citizens have to experience on a daily basis just to stay alive.  Unfortunately from what I have personally experienced and from the many, many stories I have seen and heard, this has become increasingly pervasive behavior throughout our society instead of the exception, and those who engage in such terrible behaviors should truly be ashamed of themselves!

I am very grateful to be able to share my story with you.  I know for a fact that there are others who suffer greatly too, because I constantly hear their incredible horror stories, including the stories of those who unfortunately are no longer with us.  Since the time this website was created in 2004, I have been contacted from people all over the world who have shared information about their very troubling situations with me.  The hardest stories for me to hear are the ones, which are too many to count now, of those who wish to commit suicide because they believe that they have nothing to live for anymore since they became disabled, had to file an SSDI claim and lost everything in the process. Based on my own experiences I can totally relate to how they feel but would never act on that option myself.  I tell you these things so you will realize how your life can take a downward spiral in an instant!  I tell you these things so you can see what life can REALLY be like for America’s most vulnerable citizens.  I tell you these things so you will never judge others, for you may one day be in their situation.  

The following are some things I have learned along the way that I hope you can benefit from.  Do not dwell on the past because you can’t change it, only reflect on it, so you can learn from it, and not repeat past mistakes that you might have made.  Keep an eye on and prepare for the future, but only focus on the minute at hand because that is the ONLY thing that is certain, and enjoy every second of your life to the fullest!  It is not the quantity of life but the quality of it, and a very good friend often told me, and I found it to be true, that is the journey that should be valued and not the destination.  Knowledge is power, and the more you know the more you grow.  People seem to be so quick to say mean and insensitive things to others but are afraid to compliment others, when instead it should be the other way around.  Never, ever be afraid to say I love you and say it often.  I am so glad that I always do this because in some cases, it was the very last thing I got to say to the person I cared so much about before they were suddenly gone from my life.

 
Photos by LJ Fullerton

As I get closer to that sunset on the horizon, and look back on the path I have taken I only have one regret.  I am sorry that when I was healthy I never started or joined a band, so if you have a dream or a goal, do not put it off until tomorrow, but pursue it NOW, or you may never get the chance again.  I only wish they had TV shows like American Idol or The Voice back when I was younger because I probably would have auditioned for one or both of them.  Ironically I have been given the gift to be able to recognize talent when I see or hear it and my record for picking winners on those shows is 98%.  If only I could translate that talent into picking Lottery numbers I could live out the rest of my days with a little comfort and security instead of the great stress and despair that I always have.  I am truly blessed and always grateful for Arnold, and my family and friends whom I rarely see anymore because of my situation, and for their enduring love and emotional support.  Other than them, singing, music and comedy are the only things that really bring me any joy in life these days.  Music and laughter are the only medicine that is truly keeping me alive, and which allows me to be able to cope with my circumstances.  So I must say a special thank you to all the wonderful local and national musicians who have been writing the soundtrack to my life, and all the comedians who make me smile and laugh.  You have always given me such a natural "high" that I have never had to resort to using any other methods of escape during the tough times I have had to deal with. 

The one thing I would love to do most before I leave this world at the top of my "bucket list" is to sing with all my musical inspirations in some way – (Peter Gabriel, Phil Collins, Sting, Bono, Dave Matthews, Coldplay, Adam Levine/Maroon 5, Elton John, Paul McCartney, Mariah Carey, Kelly Clarkson, Katy Perry, Colin Hay, Steve Perry, Roger Hodgson, Jon Anderson, Peter Frampton, Bruce Hornsby, Badlees, Collective Soul, Lou Gramm) and way too many other favorites to list here... While I fear this dream will never become a reality for me since time is quickly running out, everyone has the right to dream right? 

        

I feel that I was saved and have endured this whole ordeal for a reason, part of it in order to help others and hopefully to be able to save some lives in the process.  I also believe the problems with the Social Security Disability program happened to me because I would not sit back and allow these abuses of the disabled to continue without speaking up about it.  I have learned many valuable things from what happened to me, and I want the world to learn from my experience as well, before I depart from it.  My goal is to help and educate as many people as possible about the issues that have drastically changed my life and get legislation passed to fix the problems I have encountered so that nobody else will ever have to live like this.  I would also like to speak to medical students and doctors so they can fully understand how important it is to listen to their patients, order the proper tests, and truly realize the devastating effect it can have on a patient’s life when they don’t.  I have seen so many aspects of our health care system in this country and there is no reason why it should cost as much as it does, and there is no good reason why EVERY American should not have the health care they need to survive.  The things I have learned over the years would shock you beyond belief.  I want everyone to understand that even the permanently disabled, who cannot earn a paycheck, can still make valuable contributions to society.  If even one other person can avoid the problems I have endured by hearing of my experiences, then that is worth everything to me.  Thank you for your precious time to let me share some of my life story with you, and please share my story with everyone you know.  Feel free to contact me with any questions you may have on my story, Social Security Disability Insurance (SSDI), Supplemental Security Income (SSI), Social Security, Medicare, Medicaid, general disability, Senior/Eldercare, poverty or health related topics.

LJ Fullerton
©Copyright 2004 – Revised ©Copyright Writers Guild April 2006/September 2007, Revised ©Copyright June 2015
NOTE: Unauthorized use is strictly prohibited

LJ Fullerton - Brain Surgery January 14, 1997

Please help me to survive (food, medicine, health care, transportation, shelter, insurance and other necessities):  

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Please help me to achieve the goals on my bucket list before it is too late:  

                


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LJ Fullerton
PO Box 26378
Rochester NY 14626

Thank you for any help that you can give.  It will be greatly appreciated more than words can say. 

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This web page was created by LJ & Arnold

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