A Focus On What Effects People In Our Community Today
Subject: The Problem - From The Beginning
*Let me start by saying that I have had to rely on paperwork, others memories on the subject in some cases, and some foggy portions that I do remember about this as there is so much to tell and so much that has happened since I first became ill 6 or 7 years ago. I had to have help in preparing this or it would have never been possible.
I am not perfect and I know I can not remember or account for it all, but I will try to get as close as I can. There are some portions that have impacted me so much that I know I will never forget them as long as I live. I can not remember dates unless I had them previously written down, I can only tell what is in my heart and the anguish, pain, and frustration it has put my family and I through. Here is the full version along with all the names, I can say Iím fairly certain I can back up everything in here with paperwork to the best of my knowledge. I have tried to supply a scanned copy of each document I felt you should see along with this. The links to them follow this document (bottom). I have more medical files than this, I just wasnít sure which to include.*
This is in regards to my denial of SSD (Social Security Disability), my wifeís denial of SSD/SSI (see SSA Doc A & B), and Indiana Medicaid (see IN Doc A, B, & C). It wouldnít be such a problem if it wasnít for the fact that you pay into this program every day of your public work life, you are told it will be there for you when you need it, and then it turns out that you have to be homeless, penniless, and almost dead to receive your benefits. Well, at least thatís how you end up by the time you are denied so many times and you have to hire a lawyer just to get your due. Nothing against the lawyers either, but you end up having to pay them out of your settlement. That is supposed to be your back payments, not legal fees. Sorry for the rant, but I wanted to get your attention on this matter. Please do not ignore this letter as I intend to make this as public as I can if I receive no action. There is already a paper in St. Louis MO that wants to run this story! More will follow, and local papers will want it then also.
Before I get into the events that led up to this letter allow me to tell you about our medical condition. My Doctors tell me that I have Diabetes, Heart Disease, Thyroid Problems, Neuropathy (legs), Emphysema, Asthma, Sleep Apnea, and as I found out not too long ago when I had to have lens replacement in my left eye, Glaucoma. My wife is suffering from Recurrent Brainstem Strokes.
Iíll try to make this first part short, I was born and raised by a loving set of parents. They instilled proper values in me even though I resisted and did the typical child thing and thought I knew it all.
The one thing my Father taught me that I learned well is that you never get ahead in this world or have anything without working hard for it. I worked with him, along side him in some instances, and learned from him in most instances. I have never met another man that was as hard a worker as he was. My father was born into a poor family, he never went to college, he had 5 brothers, and working hard with his hands and using the common sense he had was the only tools he had to use in this life. He died of cancer on New Yearís Eve 1984 at the age of 45. There was no finer or a more decent man anywhere. I was told the cancer that killed him was hereditary and could be passed on to his children, I guess we will see.
The point Iím trying to make here is simple. Iíve worked hard all my life; in some cases I worked two jobs at the same time. It was not uncommon for me to put in 12 to 18 hour days, catch a few hours rest and then go again. That is the legacy my father left me, teaching me how to work for what you want in this life, ďHard work pays offĒ he told me on many occasions. Not so much monetarily, even though the two usually go hand in hand, but that feeling of accomplishment, of self worth, the image you keep of yourself in your own mind, but most importantly you got it honestly and no one can deny you that or take it from you.
Well, someone did take it from me. Iím not sure who, how, or why, but they did. What they took wasnít material possessions, even though Iíve lost a lot of those over the years, but the ability and knowledge that my father left me which is more precious than anything money can buy.
It all started when I was working for a convenience store as an Asst. Mgr., Village Pantry in Indiana. I was trying to get into a better management position and eventually get my own store to run. I had changed jobs after three years as I previously worked for an internationally known company in one of their factories (Frito-Lay in Indiana). I was trying to work my way into their trucking division as I was a trained Truck Driver complete with a Class A CDL and Hazardous Material endorsement, but you had to know someone to get into one of those positions as it turned out.
Not having any college behind me I figured the management position at the store would be my best bet at a decent paying position that had room for advancement and would allow me to be home each night with my family. I planned on getting a degree later after I got into the position so I could possibly advance to District Mgr. or higher. I was ambitious and felt I had the right stuff to pull this off. I had a good teacher in life (my father) and was sure of myself.
You never see these things coming though and somehow I caught Viral Pneumonia (See Reference Document 1). I didnít think this would be a problem and considered it as just another cold I had caught from a customer. I was wrong though as you will see later.
I went to my family physician (Dr. Lee Dupler, IN Ė Now retired) and he put me on some antibiotics, which didnít work. Then he had me take a drug called Prednisone for a week. In case you arenít familiar with it, it is a steroid with some nasty side effects that I was never made aware of (See Reference Doc 1E, it is stated in there that I now had Diabetes as a result of taking Prednisone. My Diabetes is part of a Medication Side Effect listed under Discharge Diagnosis. Who do you hold responsible for this? Anyway, this happens later). Due to this I never had the chance to decline the choice of taking it. Of course you have to remember that I was also taught while growing up that you didnít question your Doctor. He knew what was best for you and if he said you do it, then thatís what you did. I have since learned not to be so trusting of physicians and their chemicals. In the end it all comes down to this. You have to know your doctor, know that you can trust his decision, but most importantly he has to be willing to listen to you and rely on your input on whatís going on in your body. Anyone other than you can only guess at how you feel or whatís going on inside you.
To continue here, you take 5 pills the first day then each consecutive day take 1 less till gone (5, then 4, then 3...etc.). Needless to say, it didnít work. So, he put me on it a second time. It didnít work either. So he referred me to a specialist (Dr. David Emery Ė See Reference Doc 1B & 1C).
So, I go to see the specialist at Arnett Clinic in Indiana, I canít remember the date, but it should be in my medical records. Anyway, he put me on another round of Prednisone, which didnít work. So, he informed me was going to have me take another round of Prednisone. He was sure it would work this time. This makes a month or 4 weeks of taking Prednisone.
In the meantime, while all this was going on with Dr. Emery, I was still working, but for some strange reason I wasnít getting any better. I kept feeling worse and worse. My eyesight was starting to get bad, I had a thirst that was unquenchable, and it felt like I was in a swimming pool walking through water all the time. My legs felt heavy and as if there was a resistance to movement. Still I kept working, I was required to work 54 hours a week, plus I covered most all shifts when people called in sick and they did that a lot. So essentially I lived at Village Pantry and went home to sleep and shower. I lived around 10 miles away and my eyesight was getting so bad that I almost couldnít see to drive to work. I could see clearly about 10 foot in front of my car the rest was a blur. I could make out shapes, but that was about it. I couldnít distinguish what things actually were till they got close enough. I drove by keeping my car on the grey strip I saw in front of me. When a blob was coming Iíd hug my side of the strip and hope they were on their side cause I couldnít tell until they were so close Iíd have no time to react if they we on my side. Finally it got so bad that I had to have one of my step-sonís to ride with me and tell me when something was coming, where corners were, and such.
One day while I was at work I had to call my wife and have her take me to the emergency room. I felt so bad I just couldnít work any longer and had to leave in the last quarter of my shift. I had her take me to Home Hospital in Indiana. As I was a patient of Dr. Emeryís I felt that a hospital in the same town would make it easier to get in touch with him and receive further instruction as necessary. I was informed that I now had Diabetes by the E.R. physician and was given insulin to help my condition. There was no way I could return to work in my present condition so I stayed home on sick leave from work (See Reference Doc 1D & 1E).
This is where it all starts to get hazy for me and hard to figure out. Dr. Emery sent me to Dr. Oates, in the same building and organization to the best of my knowledge, for my diabetes and I never saw Dr. Emery again. I donít know why I never saw him again. I just know that I was referred to Dr. Oates rather hastily. I didnít see Dr. Oates that often, mostly I saw her Nurse Practitioner that didnít have a clue what was going on with me or how to help fix it. Dr. Oates seemed competent though and well informed. However, my insurance had run out and I was forced to find another diabetes doctor. So essentially I was simply passed along and then kicked out the door. I searched for some insurance, but no one would insure me because of this diabetes thing. As a matter of fact, one insurance agent stated flatly ďI canít even talk to you about insurance because you are diabeticĒ.
I spent months with no insurance, begging for help to get insulin and stuff. I was used to working and being able to pay for anything I needed. To come to this was degrading and made me feel like a bum. I had never experienced anything like this before. I had always had the ability to work for anything I needed, but now that was gone and I was left looking for handouts to stay alive. You canít imagine what it is like to have your ability to work stripped from you until you are in that situation. This is when I started to loose my self esteem. I was lower than Iíd ever been before.
Since I had diabetes and I couldnít do the work I was originally trained for (Interstate Trucking) I was allowed to enroll in the states Vocational Rehabilitation program. After a little time on the program and some testing by a career counseling office they had contracted to determine what I would be good at. They decided the following. (It shocked me that I wasnít as ignorant as I had been made to feel by so many).
** Below are the DOT reference numbers and titles for what they said I would excel in. I have left out the Descriptions in an effort not to bore you with too many details, but give you enough information you could look it up on your own if interested. I also have the original Vocational Assessment Report available for review to back up my claims, if youíre an interested and qualified party. It was just so large I didnít include it in here. **
ē 030.162.018 Ė Programmer, Engineering and Scientific
ē 189.117.026 Ė President, Govt. or Private Company
ē 030.167.014 Ė Systems Analyst
ē 033.162.018 Ė Technical Support Specialist
ē 030.162.010 Ė Computer Programmer
ē 030.162.022 Ė Systems Programmer
ē 169.167.030 Ė Manager, Data Processing
ē 160.167.050 Ė Revenue Agent
ē 169.167.082 Ė Manager, Computer Operations
ē 031.262.010 Ė Data Communications Analyst
ē 188.137.010 Ė Supervisor
ē 032.262.010 Ė User Support Analyst
ē 039.264.010 Ė Microcomputer Support Specialist
ē 162.157.018 Ė Buyer
Because of my illness and the uncertainty of the future I decided to go to a local state college for entry level computer programming. I did well in what I was doing, but as time went on my illness was progressing and I was starting to have problems remembering things Iíd studied, I would fall asleep occasionally at the drop of a hat, my legs would hurt severely or go numb most of the time, but I was used to the pain for the most part. Then one morning I was waiting in the parking lot around 6:45AM for them to open the front doors so I could go study in the library till my first class. I was listening to the local morning radio show. Everything was fine and I felt pretty good, the next thing I know its 10AM or so and Iím staggering into the library all disoriented and confused. They had to call my wife to come and get me and take me home. How embarrassing, in front of the whole college it seemed, and I almost couldnít even remember my name. From that day on my short term memory was gone it seemed, but I could at least recollect the days events. However the next day it was like I had a clean slate, nothing on the chalkboard. I had never in my life had this experience before and prided myself on being meticulous in my organizational skills. Like I said, I had held several Management positions and was confident in my abilities to perform those jobs. Not anymore, it was gone, all the things my father had taught me, all the extras I had learned on my own, and the confidence/pride/ability to do those things.
There was one time I remember in particular because it shocked me so, I had a test in my Algebra class, and I stayed up till 1AM studying for it, and was certain I would do well on it and was feeling proud of myself. But the next morning I went in to class, sat down, and all I could remember to put on the test was my name. By this time I had no self esteem left. I couldnít get anyone to help me study or show me any techniques I could use to retain the information I needed or even to simply help me understand what I couldnít grasp. My sugar level was way out of control, I was developing other problems too, but they hadnít manifested their selves to a noticeable level yet. I had to drop out of college because I couldnít complete the assignments and pass the tests. So I called the disability asst. (whose job it was to help you study and understand the work, but didnít help me) and told her I wouldnít be returning. She didnít answer her phone so I left it on her voice mail. She said she never got the message and I got stuck for the bill. The said they sent back part of my student loan and I owed them money.
(Almost 3 years later I complained and told them to do the math on my loan, they hadnít given anything back, I wanted to try to finish my school, and I didnít owe the school anything as I owed the money to the lender on my student loan. They said I couldnít re-enroll in school because they thought I owed them money, but they would check it out and notify me if I was right. I was never notified; instead they refunded some of my Student loan after all that time, knowing I had no money or income to pay them anything so I could return to school. The way I see it, this was done with the intent to keep me from attending. It was my student loan, and I owed the lender for it, they had no right to do that then try to stick me for the money they refunded just to keep me out of school. This is clearly discrimination and I will be addressing this issue with them in a court of law after I am done with the problem at hand. I can get the information I need from my student loan provider though if you would like to see it).
To sum it up, Diabetes was taking itís toll on me and I soon found myself forgetting things that just happened or Iíd just said, falling asleep more often every day at the drop of a hat, and being so irritable and hurtful to those I loved that I almost couldnít live with myself. My emotions have run rampant, itís so hard to believe all this was happening and I couldnít get anyone to listen.
Somehow during this time I started to loose my voice also, had a sore throat and was feeling even worse. I ended up having to have surgery on my throat for pre-cancerous lesions. (This is another can of worms all together, as I went to Witham Memorial Hospital E.R. in Indiana for that and was misdiagnosed and referred to a physician by them that, by his own admission, doesnít practice medicine in that area. He said he didnít have a clue what to do and couldnít understand why they sent me to him. This is another issue to be addressed later as they want me to pay them for misdiagnosing me and a bad referral, if they had looked where I asked them to look they would have found the problem and I can prove it I believe. (See Reference Doc 1F, 1G, & 1H).
My wife went to the welfare office while I was in surgery to sign me up for Medicaid as no insurance company would touch me since I had been diagnosed with Diabetes. It ended up I was denied for it because the case worker I had at the time didnít like me and said she never received a fax from my family Doctor at that time (Dr. Dupler) which was the same doctor I had for years. My Doctor had on record that the fax was sent and received by the Family Services office, but I was still denied on that reason. They made me re-apply almost a year later, loose the ability to pay for the surgery and all the Doctor visits as I had no insurance. I still owe Dr. David Trout and St. Elizabeth Hospital in Indiana for this. It further disheartens me as Dr. Trout has since retired and was experiencing bad health his self. I pray for him, I donít know what has happened to him since. And by the way, the caseworker (Lisa at Clinton County FSSA) never notified me about the decision. In the meantime, just before I was accepted on Vocational Rehabilitation (which required a form from to be filled out by Dr. Wagonerís office stating my work restrictions see Reference Doc 1J and updated status report on Doc 1K, not the same form as the previous was a Voc Rehab Form), my family Doctor retired (Dr. Lee Dupler); now I was without any Doctor, period.
During this same time frame I was accepted by Voc Rehab and found my current family doctor, Dr. Don Wagoner; he helped me and allowed me to pay what I could when I could. He also gave me samples of medicine he had at the clinic he ran so I could take medicines I needed as I still had no insurance and no employment, God bless him; he has been there for me when I needed him most. You couldnít find a better Doctor or human being anywhere in my opinion. I am fortunate to have found him.
I had applied for Medicaid in Indiana, but was having trouble getting it approved to help pay my family doctor (Dr. Wagoner), I was worried about the bill I owed him, and how long he would continue to see me without my being able to give him some money as I had no employment.
After my case was given to a different case worker at the welfare office I was approved for Medicaid (See Reference Doc 1I for verification of start date as I can't remember exactly when I got approved). Finally I had insurance again, but that was just one good thing at the start of bad things to come and the bad times that had been.
During this whole time I watched the woman I love worry and work herself into bad health. She had no insurance and didnít qualify for Medicaid. She wouldnít go to see the Dr. because she said we couldnít afford it. I couldnít convince her that she couldnít NOT afford to go. She had multiple things going on with her that needed treatment, but she said she was trying to keep money on hand for gas to get me to my doctor and money to buy my prescriptions. So, she kept working and didnít go to see Dr. Wagoner. She finally got signed up for Blue Cross Blue Shield and it went into effect Jan 1, 2005. It was about 2 years too late though. She needed it long before then. I will talk about this later.
Time marches on, numerous doctor visits, I have one every month that is routine for me to get my monthly medicines that are regular to my survival. In between these I have had other visits and my doctor has told me that I have, as a result of the diabetes, developed other problems. I have congestive heart failure, neuropathy in my legs, sleep apnea, short term memory loss, and depending on my sugar levels on that day I fall asleep without warning. I have developed emphysema as a result of smoking for years. I have been fighting with quitting smoking for a long time. I donít drink alcohol, I donít go to bars, and I donít do drugs (other than my prescribed medicines).
Remember, I told you I used to be a truck driver at one time in my life, cigarettes and coffee was what I lived on as I only had time to eat one meal a day. Through all this though, smoking has been the only crutch or vice that I have had to lean on. Now I have to give that up also. As a matter of fact, on one particular visit to my family doctor the nurse practitioner Mr. Hartman (which I have seen most of the time here lately, Great man, very intelligent, I donít know why he isnít a Dr. yet. He would make a good one, but thank god he works with Dr. Wagoner, they make one of the best teams Iíve ever seen) told me ďI have seen this before many times and Iím telling you in no certain terms. Youíre 46 and I can almost guarantee that if you do not quit smoking you will not make it to see your 50th birthdayĒ.
I am trying my best to get rid of it. It wasnít till I met my attorney in my disability case that I got an insight into how to quit that has helped me. Sure Iím still having a cigarette every now and then when the stress level gets too high, but for the most part I have quit and I donít smoke every day or even purchase them daily like I used to. God works in the strangest ways and places, my attorney was the one that showed me the key to leaving them alone enough to make the difference. Whoíd a thought? (Update: I have, since I made this original statement, resumed smoking as it is the only form of stress relief I have available).
Back to my doctors. My family doctor has had to put me in the hospital several times due to my heart as he is worried about the enzyme levels found in my blood tests and the water I retain around it. Iíve had surgery 4 times (each time with a specialist), had surgical procedures in my family doctorís office 2 times, and been put through so many tests that I canít remember them all or where they all took place (No exaggeration, my medical file has been Almost as thick as 6 inches, I seen it with my own eyes). My doctor has put me off work till further notice, which his office has stated that I am unable to work lifetime was their exact words (I have it in writing, again see Reference Doc 1K). Now through all this, we have had to somehow pay our bills Ė I.E. Ė rent, lights, phone, and the big one, gasoline to get to all these places.
My wife has been the only one working trying her best to support the 5 of us during this time.
Do you know how far you can stretch a dollar?
I do and itís not very far.
Iíve filed for Disability this makes the third time and been denied every time since the year 2000. My wife has filed for SSD, SSI, and Medicaid since she became sick and been denied also (looks like my attorney has another case). I figured if I was denied benefits then they must know what they are talking about. So as a patriotic American I trusted my government and tried to go on. Iíve held two jobs since I became sick, trying to get back into the swing of things because I trusted my government to make the right decision about the benefits I applied for.
The first of the two jobs was one in which my wife was my boss (these were prior to her health problems as she has just become too ill for work this past May). She ended up firing me because I was killing myself trying to keep up with it. Mind you, I was used to working 12 to 18 hour days and I couldnít even keep up with working in a laundry room? On top of that I caught what? I caught Walking Pneumonia as a result of it. Talk about disheartening. I remember trying to work sick one night and having to let my wife work my shift after she had worked her shift that day while I sat in the car, too sick to drive home, wrapped up in a blanket and shivering due to fever. It was summer too and around 80 degrees out.
The second one was a server in a restaurant. My official title was Short Order Cook, but I was only a server, the food was already cooked, I just put it on a plate and micro waved it as needed. I had a chair back there that I could sit in as needed. The only reason I was able to keep that job was because my loving wife would come up there at the end of my shift and help me finish my job on her own time since she was off work. Sheíd pack up the kids and come to help me every night so I could make minimum wage at a part time job. Do you have any idea where my dignity and pride went after that?
The Job where my wife was my boss closed two weeks before Christmas that year. The restaurant job closed two weeks before Christmas the next year.
So, for two years running it was..
Merry Christmas huh?
Try getting Christmas presents for 3 children and paying bills with no income two weeks before Christmas two years in a row. The first year, we got some help from relatives for Christmas. The second year, If it wasnít for the generosity of o
ne of my best friends that is a trucker (Jeff) and just happened to be going through the area at that time with some extra cash on him, and a heart the size of Texas, the kids wouldnít have had a Christmas at all. God Bless him, he and I are as close as family should be, I continue to pray for him out there on that treacherous highway.
Then the next summer we had real fun, My wife found a new job that spring working for Wal-Mart. This is when her problems started in my opinion. I had three of my four surgeries and 2 weeks after the first surgery, while I was supposed to be on bed rest and had developed pneumonia again (whew!) as a complication from the surgery, we got evicted because my landlord wanted to raise the rent and couldnít with us still living in the home. (Sorry for the language), but What a JERK! I will never forgive him as long as I live. Still my loving wife kept working herself into bad health. If it wasnít for family (Christinaís Mother, Father, and 2 Sisters families) and another of my good friends (Johnny, who brought his trailer and worked for 16 hours each day), we wouldnít have been able to move. (And my mother, she gave us the money to pay the deposit and get utilities transferred.)
Since I got diabetes it now takes me twice as long to get over being sick or to heal from an injury or surgery. I slept on our couch for the first month and a half that we were in the home we are now renting.
Moving on with our financial burdens. Every tax time we try to catch up on bills and pay what expenses we can figure on for the year. Thatís the only reason we have insurance on our car so we can get around to all of the doctors and such. Itís also the only time we can buy the things we need for the year like kids clothes, kids school supplies, car insurance, car repairs, etc. And that is only if the car repairs donít take up all the money.
Financially mind you, as if the pressure of all of this isnít enough since my wife is/was the only one working. At a job that doesnít pay much and usually we only have around $30 to $40 left to run on every two weeks. She got a promotion at work and within a year they took it away from her and lowered her pay after she had just signed up for her health insurance. I wonít go into it, but they messed her over big time and hurt her badly. In the end they took away more money in raises than she was given for the job. She put all she had into her job. Letís say that loyalty and dedication to your job at Wal-Mart gets you squat on due to some of the management team that wouldnít do their job and some of the workers that had aspirations of their own. Those individuals didnít care who they hurt to get what they wanted. I have found that no matter who you talk to or what you can prove, you do not get the support from management that is required in a business. I really believe that is why they have had so many lawsuits filed against them through the years. Know that there are some that work there that are incredible people, without whose critical help the thread we were hanging by would have snapped..
So then we were faced with all the medical problems, bills, travel expenses, and extraís that the kids need like clothes - school supplies Ė etc. But we were facing it on less money and even more so when they started to take out for her insurance. We were barely getting along by the skin of our teeth at the start of this year. But we were staying afloat with the help of relatives, govt. programs (food stamps), and the kindness of strangers. Iíve never felt so useless and as low as I did then. My wife and the love we share is the only thing that kept me alive most of the time. However, it looks like we will be out of luck come tax time of 2007 because we are not able to work.
So letís dig a little deeper shall we?
My wife had to finally go to see Dr. Wagoner a few times because she was sick and couldnít get well. Let me state now that she has been seen primarily by Mr. Hartman at Dr. Wagonerís office. I just canít say enough good things about this man. If you could only see how intensively he pursues an answer you would understand. They decided she has some sort of palsy, but they donít know how to fix it or exactly how to treat it. I personally think it was the start of the problems she now has, but no one could catch it in those early stages, it would have been impossible as I will explain shortly.
One sunny morning this past May 20th I got a phone call from where my wife works, Wal-Mart. The lady on the phone told me I had to go and pick my wife up from work as it seems that sheís having some sort of seizure. So, I called our doctor and he said to bring her to his office to be seen immediately. I rushed to her work, got her in the van and flew to the doctorís office. He looked at her and immediately had me to rush her to the Howard Regional Hospital Emergency Room. He said the Stroke team would be standing by. He said if she was having a stroke there was a medicine they could give her that could help her, but in some cases it had been know to kill people dead also. This scared me to no end. (Drove that van 70 to 85mph, broke every local speed limit between her work, the doctorís office and the hospital E.R.) I got her there and they determined she had a mini-stroke.
As a result of her not having insurance and not being able to go to see Dr. Wagoner in the previous 2 years, on May 20th, 2005 she had what is known as a T.I.A. (See Reference Doc 2A, 2B, 2C, & 2D) and had a reoccurrence on June 13th, 2005 (Canít find our copy of supporting Doc at this time. It is on record with Howard Regional Health Systems, Indiana).
So, we did what most Americans would do, we filed for SSI & SSD to try to compensate for the loss of income till she could get treatment and get back to work as we couldnít afford supplemental insurance. We were barely getting by as it was and now we faced the loss of everything we owned and some things we didnít, like the home we are renting off of Donna Faye. She and her husband, Byron, have turned out to be true friends and a godsend to us. Without their help we would have surely gone under. God bless them.
They still canít pinpoint it because it is such a minute problem in such a delicate area. They think it is in her Brainstem where the problem exists. They have stated that it is a recurrent problem (See Reference Doc 2E) and eventually the condition will get bad enough that she will have a stroke and it will either A. paralyze her or B. kill her unless it is treated immediately, or so we have been told. But the problem is on such a small scale that they canít detect it, even too small to show up on her MRIís (we have the negatives of some of her MRIís for inspection if necessary). It was told to us that even if they found it they would have to do surgery on a molecular level to correct it and that technology hasnít been invented yet. Also we were told that due to the nature of the place where it is located, the surgery involved would be impossible as all the nerves, blood vessels and such are compressed together, so close they are almost molded into one piece no bigger than your thumb in itís smallest width between the two knuckles.. Our Doctors office has written out her diagnosis on a prescription pad for us to include here (again, see Reference Doc 2E). The SSA and Indiana Medicaid people have said that there is no evidence that she canít perform her work. Ok, the Doctors office has put her off work indefinitely. What part of INDEFINATELY doesnít the SSA and the Medicaid Review Board understand?
Now this is all not to mention the fact that she has had her gall bladder removed, had to have a DNC performed that was supposed to be a hysterectomy but because of insurance reasons they couldnít do it. It was when the state gave her one year of Medicaid, but it wouldnít cover it unless they did the DNC first even though the physician that examined her stated that she needed the hysterectomy to correct the problem instead. Sheís continued to have female problems ever since.
So, now we have no income, I am ill, my wife is ill, the doctor bills are piling up, the regular bills are piling up, our resources are depleted, The Township Trustee for Clinton County Indiana (Mr. Avery) is helping to pay our rent and is, in my honest opinion, about to deny us help because of the length of our need. We live in constant fear of loosing our place to live and being homeless. He has told us to find a cheaper place to live. Well, there isnít any. We have checked as he asked and you can not find any cheaper than we have. (Donít get me wrong here; we are grateful for all the help he has given us. The suggestions of things we might try that he could think of and the generosity he and his wife have show us as they have given us some vegetables out of their garden and some apples from their trees. They grew their selves, shared it with our family, and I in no way want to belittle their generosity). The part that gets me though is this. If we donít have the money to pay our bills now, how in the world could we possibly have the money to move?
There is no relief from the stress in our immediate future, we owe the school for books and such for the kids, our vehicle has no air conditioning and the heat of summer effects both of us terribly (thank god for fall, maybe we will get a break), the passenger side window of my car is broken out and Plexiglas has been duct taped up in place temporarily which makes it hotter in it, my mother paid to have the alternator put in it along with the cost of the Plexiglas or we wouldnít have anything to drive on top of it. I have a van that was given to us by my mother & sister (my sisterís old van that she was going to send to the junk yard). But once again the passenger side window doesnít work so itís hot in it because it has no air-conditioning either. My mother also paid to have the radiator fixed in the van so we could drive it, but the exhaust fell off of it so itís loud now and gets terrible gas mileage because of some sensor and valve is bad up by the intake.
Just as an example here is a list of events that we went through in just a short time from the day I took my wife to the E.R. at Howard Regional Hospital. (See Below)
ē My wife was hospitalized by the Howard Regional Hospital ER
ē Was put off work (Dr. Wagonerís office) until the 14th of June (means no money).
ē Since she was hospitalized we have had to run to:
1.ĖTo family doctorís office 2 times (Pre & Post Hospital stay)
2.ĖHoward Regional Hospital to visit my wife and pick her up.
3. Ė My eye Dr. for check up, post eye surgery
4. Ė Home Hospital (Disability Board test)
5.Ė3 trips to and from while wife was in Howard Regional Hospital
6.Ė Neurologist for my wife (Referral from family doctorís office)
7.Ė Imaging Center for more MRIís on my wife
8.ĖThe morning of 6-03-05 to family doctorís office so she could get blood work done at Neurologistís request. (Informed it was a fasting test and had to return on 6-06-05)
9.Ė Return to family doctorís office for my wifeís blood test 6-06-05
We live in Indiana which is 15 miles from the Neurologist, Imaging Center, and Howard Regional Hospital. 24 miles from Home Hospital & my eye doctor, and 12 miles from family Doctor Don Wagoner. Now figure up the mileage on those trips and do the math on the gas. Thatís around 282 miles and our car gets around 15 miles to a gallon which is 18.8 gallons of gas @ $2.76. That comes to $51.89 and thatís if we drive no where else. Thatís no trips to the pharmacy or food store or anything. During this same time frame, my van broke down while trying to find her Neurologists office $200 + labor charge (needs new radiator), the passenger side window on my car busted out $123.78 + labor charge (if I can get a used one according to my mechanic), I owed the light company $159 (Must be paid by the 10th June, had to use most of the bill money for gas to get everywhere and buy medicines, food, etc. during wifeís hospital stay) and according to my lease if the lights get shut off I get evicted.
Stretches that $30 to $40 every two weeks that we used to have kind of thin doesnít it?
We also received a letter from Blue Cross Blue Shield Insurance Company stating that my wifeís TIA (family doctorís office official diagnosis, again see Reference Doc 2E) is a pre-existing condition and they wonít pay for anything, they finally paid for some of it, but cancelled her insurance because she couldnít pay them any monthly premiums because her illness put her off work for such a length of time.
HOW CAN THEY DO THAT?
THATíS WHY YOU BUY INSURANCE!!
IN CASE YOU HAVE HEALTH PROBLEMS!!
At the moment this all happened I had exactly to the penny $14.22 in the bank.
For 6 or 7 long years Iíve had to feel useless as an old sock with the IQ of a handball. Everything Iíve tried to do has come to naught.
Iíve done everything from:
1. blame myself for our financial ruin,
2. consider myself as a burden to my family,
3. plan a possible suicide,
4. label myself as a failure,
5. consider myself as unworthy of my families love,
6. consider myself as a second class citizen not worthy of anything other than lifeís basics (sometimes not even that),
7. try to shoulder all of the burden for the whole family to keep them from the anguish,
8. try to be the rock for all of them to lean on, done without medicines so the kids could eat - do a function at school Ė or get them clothes, things most people take for granted.
(My wife has made such sacrifices for the kids, even more so as she didnít have insurance till 01-01-05. Most times her medicines were too expensive for us to purchase before or after she got insurance. And now back to no insurance there is no hope of getting her the medicines she needs. I just canít believe Blue Cross tried to term her Stroke as a pre-existing condition).
1. Try to start a business on the net,
2. try to do some easy computer work for bill money,
3. try to promote musicians for a small percentage,
4. and anything in between I could think of that I could use what little mind I have left to generate some form of income.
But all were unfruitful labors.
People have wondered and asked why I would grasp at straws like that. Itís simple, when everything you love in this world is going under and you canít do anything you know how to do to change it, you canít seem to learn anything new to relieve or resolve it, thereís no program you can get on to help save it, and no one you know has the money to help as they are struggling themselves.
YOU GRAB AT ANY STRAW THAT IS AROUND TO TRY TO KEEP YOUR FAMILY AFLOAT OUT OF DESPERATION!!
Recently we learned that on my wifeís last paycheck she received from Wal-Mart when she was put off work, someone garnished her wages. It was from a bill that I owed from my throat surgery. The one that should have been covered by Medicaid, but wasnít because of the aforementioned problems with a caseworker (Lisa) that didnít like us. I donít understand how they can do this without notifying us that we had to go to court on this issue, but they got away with it somehow because we were never notified. We also received a summons to go to court on October 19th, 2005 in Kokomo for a bill we owe from a visit to an ER for my wife before she had insurance.
How can you give money if you donít have any?
The previous list of events though, all transpired between May 20th and June 6th of 2005.
All the events in this letter transpired in 6 or 7 years, but have been just as hectic or worse the whole time through.
We were told by our family doctor to relax, since I have so many medical problems and especially since my wife had a stroke. Having no stress on her is paramount. So, Iím trying to find the answer to these questions too.
When do we have time to relax?
Better yet, how can we relax with all of this?
This is not everything either, this is just what I can gather together that has happened. After a while it all seems to blur together, itís such a weight. All of this is not to mention the emotional trauma my wife and step-children went through as she was abused Physically, Emotionally, and Sexually (if you only knew what has happened to my wife, it would make you physically ill) in her last marriage and has carried that burden with her ever since. I have tried to help her get over it, but itís hard not knowing how to be a counselor since she canít afford to go to one.
Donna Faye, our friend and landlady,( I consider her a friend first, sure business is business and I wouldnít hold it against her if she had to eventually evict us as this is a bad situation), told us if we could contact the HUD office she would be willing to accept HUD assistance if it would help us out. So we checked on HUD in our area, the gentleman we talked to at the HUD office was in our state capitol (Greg somebody, canít remember his name right now, I will try to find his name and revise this). He stated, there is no HUD program in our county now as our county has been deemed closed as there is no available funds, they are not taking any new apps for the program, and even if they were he has people that have been accepted to the program and are waiting on their first voucher for HUD assistance for over a year. He also told us that he was so sorry he couldn't help as there were no assistance programs open in our county and it made him feel hurt to have to turn people away when their landlord had been so gracious as to accept HUD.
We have checked for other types of assistance in our county and have come up empty handed there also. There is a very extremely limited amount of programs in our county and most all of them are out of funds or we donít qualify for them.
At this moment I'm completely out of idea's, patience, stressed tighter than a piano wire, fearful for my families future, and scared to death of my wife's illness (I canít even begin to worry about my health at this time or I will break down). So, my question is simply this
What is a person to do?
I know that we all have problems, life is hard at times, and that those problems when solved are supposed to strengthen us. It seems to me that when you fight bureaucracy you canít win without some extra help in your corner. Thatís why I retained an attorney and pursued this in this manner. You wouldnít think it would have to come to this, but I have been told by everyone I have talked to that you can not get anywhere when filing for disability these days without the help of a lawyer. Iím sad to say they have been proven to be right. This has really taken away the trust I had in my government so I am turning to all of the people I helped to elect to office, even some I didnít, to see if I can get some relief before we loose everything we have and possibly our lives.
As I stated at the beginning of this letter, itís sad to think that you pay into something like this most all of your life and then when you need it you have to go through this much to get your benefits and part of your benefit settlement goes to pay for an attorney that you shouldnít have needed in the first place. God Bless Him for being there when needed as he is a godsend, but the point is he shouldnít have been needed in the first place.
Please accept my apologies for this if I came across too angry or pushy, in reality I am just so damn scared for my family that I donít know what to do. I need your help desperately.
Thank you for any help you can give and for your valuable time in reading all of this as I know it is a lot to take in.
(As information is slow in coming I will try to post updates weekly, when I can, or whenever the situation demands)
9/26/2005 9:32AM Ė On 9/25/2005 my wifeís condition has taken a turn for the worse. Her vision in her right eye was blurred all day. She fell 5 times today. She said she just lost her balance and went down. At one point in time she couldnít feel her leg as it was numb. Her left hand was numb also. The problem with her left hand has been going on for about 2 weeks. On one of the incidents her leg just lost strength and the incident where her leg was numb she hit her head on the kitchen counter. I blame myself because I was taking a nap as all this has physically and emotionally drained me and I wasnít there to catch her.
9/29/05 9:33AM Ė On 9/28/05 we received a letter from our Doctors Office Ė Patient Accounts Dept. Ė They want us to pay them $100 a month or they will discontinue my wifeís treatment. They put her off work indefinitely, They told her NO STRESS as it could lead to another stroke, They know our situation as she has talked to them before. I am ready to loose my mind. My wife said, ďI guess I will not be returning to see them, If I die, then I dieĒÖ This might be my last entry.
10/06/05 12:35PM - Today we received a letter from a collection agent. It seems our Dr.'s office has turned my wife's account over to them for collection. The never called me back or notified me, just dumped it to collection. My wife talked to them, got no where. I had to call them, we are waiting to see if she still has a Doctor now. Putting this story on here is all I have left. I can't stand much more of this. Why hast thou forsaken us O' Lord? and why has our government turned it's back on us in our time of need? I may never know the answer to these questions, but I can still ask them.
10/11/05 8:49AM - First and foremost, my wife's condition is worsening. She has fallen three times over the past week and lost the feeling in her arm and leg, it has since come back, but was gone for a substantial amount of time. I just pray she can hold out until we can get her to a doctor somewhere. Now on to the latest updates on responses to our mailings.
(We forgot to check our mail at the post office that day and didn't check it till 5:30PM) On 10-07-05 We received a letter from Senator Evan Bayh's office (See SenDoc 1) that stated he would look into the matter for us. Now, after all these years of fighting the SSA we have someone that will look into this matter for us. I almost had a heat attack on the spot, it took me 2 nitro tabs and 4 hours just to get stable as all the suppressed emotion I have came tumbling forth. My wife and I were both in tears for the rest of friday night and most of saturday, as we were stunned and in disbelief that someone finally listened to us. It is now Tuesday and I feel normal again, but it took all this time just to get back to this state.
All I can say is GOD BLESS THIS MAN!!!
I don't know how the system works, so I don't know if he can help us out here, but at least out of everyone we contacted he is trying and answered our request quickly and didn't leave us hanging. I can't say enough good things about this as it is so welcome and gave us the hope that we had lost. I had completely given up on it all until this. I hope the good lord above blesses this man for his compassion and willingness to help those he can. I also hope he gives him the strength to face the trials and tribulations of his life and problems he may incur as he has given us back some of the dignity we have lost with just this simple act of kindness. May the good Lord guide him and protect him from harm.
Last friday I also emailed The 700 Club about this matter. I submitted it as a story idea. I received an email from them saying that they would forward this information to the people that needed to read it. I figure as many emails as they get just the fact that they replied to me is a good sign that they didn't just sweep it under the rug because they were so busy which is what I half expected (remember, I had all but given up on anyone even giving me the time of day at this point). So, now I wait to see if they will contact me, if they do not I can understand because this is a sensitive issue that involves the government. Most news agencies can't do much with the government lest they be put through major hardships themselves. I still have some hope though, but like I said, if they decide not to get involved I would completely understand as I would with any news agency.
4/15/06 7:30AM - Well, it's been a long time since my last update. Since that update they have found some of my heart tissue is dead (I'm trying not to concentrate on my problems much as the rest of the family and their welfare is more importatnt to me), we are being evicted, my wife's condition is going downhill even farther, she has times when she can't walk and is retaining water so she is swollen all over. She had to go to the hosp. a couple of weeks ago. They admitted her and found that she had lost a lot of blood somehow. They gave her 4 liters of blood and performed a surgery on her. Gov. Mitch Daniels office intervened on our behalf and now my wife has Indiana Medicaid also. We were going to try to get her into the Mayo Clinic because it's been almost a year and they still can't figure out what is wrong with her, but they don't take Indiana Medicaid, they take IL, and some others, but not Indiana, go figure huh? However, the attorney I retained (Ken Schuck from Muncie IN) for the SSA claims and Senator Evan Bayh's office are trying to get the cases moved up on the list because they are critical need basis. So, there has been some help provided, still the main thing so we don't loose our place to live, the SSA claims, are in limbo. The oldest boy (trying to escape the problems) got busted at school for doing drugs, which earned him a two semester leave of absence and a position in the ranks of the states probation dept. It might have even gotten some of his scholarships cancelled. I sure hope he will get to keep them as he has worked hard for them. Last night the car broke down too amidst all the tornado warnings, it was a very bad night across the state. Looks like the car will stay that way for a while too as there is no money in the bank to fix it. We really needed that to happen right now with being evicted and all. Sure gives a new meaning to the term Good Friday don't it? I'm not sure how much I need to post to update all, I will have to re-read this and then make another amendment to this part so all the events will be up to date, but this is the short version temporarily.
4/27/06 7:58AM - It's another day, some breakthroughs and some setbacks... last week we found out from the SSA that my wife will have her day in court on May 18th, but they still haven't set a date for mine yet. Mine has been ongoing for 6 going on 7 years now, yet they moved hers up and ignored mine... I don't get it.. I spent the evening of the 24th and most of the 25th (my birthday) in the hospital for heart problems... What a real fun place to spend your birthday and to top it all off they didn't find out anything as usual... Just like before, they did all these tests and never found any problems, then just out of the blue they find a dead spot on my heart. SOMEONE IS DROPPING THE BALL HERE!!! THEY CAN'T EVEN FIGURE OUT WHY I HAVE A DEAD SPOT ON MY HEART!!! Anyway, since I have been released from the hospital all I have done is sleep, like I can't seem catch up on my rest... I'll update some more after May 8th when I go to see my doctor for a post hospital stay to inform you what they have planned and/or figure out...
5/22/06 - Well, the hearing went off friday afternoon, they decided to send her to another of their doctors to see if they could support thier findings with medical evidence... If they can then she will get what she needs... If not, then we are homeless... Our attorney said that it could still be up to another 4 months before we know because of this... Because now she has to go and be examined, then the guy has to write up his finding send it back to them, then they have to review it and write out their decision and all.. It's just more BS.... We should have known... So, even though they upgraded it to critical and got the case to court as fast as they did, we are still no better off because of this new development of theirs... It just sucks... It's looking more and more everyday like we will be homeless before they get off their butt and get anything accomplished because our landlady isn't gonna be able to let us stay any longer, she has went the extra mile by helping us this far, but you can't ask for more time at this point as we already owe her $1,480 in back rent... Still we will keep praying for a miracle... And just to keep you informed, she is falling down more frequently, loosing her motor skills I guess you would call it... I had to take some of our phone bill money and buy her a new cane that has the four little legs on it to try to help her have more stability when she can walk... Soon I fear though that she will have to be in a wheel chair... Please pray along with us for some kind of breakthrough on her medical condition...
8/24/06 - I am not sure I will be able to continue to update this much longer as we could possibly be loosing our home. Our landlady has been wonderful, but she said that she can't go any farther with this if we don't get an award. She can go with us till the Judge makes a decision, but if it is a denial, she will have to evict us. No getting around it! I had my day in court after 6 years finally on the 8th of Aug. 06 and then was told it would take 30 to 60 days for a decision to be made. So, both of our decisions should come in around the same time. Wish us luck, if it does not go well we will all be homeless while we appeal the decision. The children can live with their grandparents, but the wife and I will be living in our van. This means we will loose our Medicaid and no long be able to go to the doctor or buy medicine to keep us alive as we won't have a place of residence. We will also loose what food assistance we have, so it looks like we won't be eating much anymore. I wonder why God has permitted this to go on as long as it has? On a health note, there have been no advancements in treatment or condition. Things remain the same. Well, the treatment for it all has, but the conditions have gotten worse. I guess we should be thankful that they haven't gotten any worse than they have. We are both going to go to counseling starting the middle of next week. After all these years it's finally getting to me. I can't go any further. The other day I considered ending it all, but I didn't want the youngest child to have to watch it happen, so I didn't. He has been home sick for a couple of days. I hate to have to end the updates like this, but in light of all that is going on I must. We have to start packing up our home just in case we have to move. God Bless all who have read this, I hope it teaches you some things about your government so you won't end up in a similar situation. - Good-bye for now, I only hope I can update later with good news, but I don't expect it.
8/31/06 - Today is the beginning of a new chapter in our lives. Yesterday we both had to go to start counseling as the stress and depression of our situation has grown to unmanageable size. I have been given yet another medicine to add to my basket. (yes, I said basket, I have that many medicines). Cymbalta, an anti-depressant, has been added to try to help me combat my emotional rollercoaster. I have been loosing control of my emotions for a while now. No matter which emotion I have at the moment, it's always taken way out and I can't control it. I hope this works, I can't continue to live like this. As for my wife, they were considering admitting her due to her problem with depression and stress. We went the hospital to admit her (the psych. she saw said if she didn't go she would have a warrant put out on her, I guess the doctor thought she had that bad of a problem). They decided at the last minute to let her come home with me. This is good because I didn't want to be alone this weekend. I was unsure what the outcome would be. See, the kids are supposed to go to their father's house this weekend and if she were in the hospital then I would be alone to deal with it all by myself. Being alone is a time when you are your own worst enemy. I am not sure, but I think that's a fight I would loose at the present time. Anyway, it's one I don't want or need right now. God bless all that have read this.
Below is a list of everyone I have sent this important information to (all of the links should work) and have yet to hear a word from most of them that they are looking into the matter to help.
GOD BLESS THE TWO THAT HAVE REPLIED AND TRIED TO HELP!!
Indiana General Assembly:
email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org
Indiana State Government:
Governor of IN - Mitch Daniels, Lt. Governor of IN - Becky Skillman, Attorney General State Of IN, Sen. Evan Bayh, Sen. Richard Lugar, Congressman Steve Buyer, State Senator Brandt Hershman
News Agencies Sent TO:
Call 6 for help - Indanapolis IN, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, SAT@cbsnews.com, email@example.com, firstname.lastname@example.org, email@example.com, NETAUDR@abc.com - Subject: GOOD MORNING AMERICA, NETAUDR@abc.com - Subject: WORLD NEWS TONIGHT, firstname.lastname@example.org - Subject: NIGHTLINE, email@example.com - Subject: PRIMETIME, firstname.lastname@example.org - Subject: 20/20, email@example.com - Subject: WORLD NEWS NOW, NETAUDR@abc.com - Subject: WEEKEND NEWS,firstname.lastname@example.org - Subject: THIS WEEK, Atlarge@foxnews.com, Special@foxnews.com, Ontherecord@foxnews.com, Foxreport@foxnews.com, Feedback@foxnews.com, CBN.com (web submission form), Dr.Phil.com (web submission form)
(Reference Document Links Listed Below For Individual Study)
**ALL DOCS HAVE BEEN MODIFIED FOR THE NET AND PERSONAL INFORMATION TAKEN OUT FOR SAFETY REASONS, ORIGINAL COPIES AVAILABLE FOR STUDY BY QUALIFIED INDIVIDUALS AND ORGANIZATIONS**
Reference Document 1
Reference Document 1B
Reference Document 1C
Reference Document 1D
Reference Document 1E
Reference Document 1F
Reference Document 1G
Reference Document 1H
Reference Document 1I
Reference Document 1J
Reference Document 1K
Reference Document 2A
Reference Document 2B
Reference Document 2C
Reference Document 2D
Reference Document 2E
SSA Document A
SSA Document B
IN Document A
IN Document B
IN Document C
Truth In Reporting Doc
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