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Angry as Hell !!!!!!

SickOfBeingSick
1 Recommendation

I haven't been able to get appropriate medical care for almost 30 years and not for lack of concerted effort. I have multiple organ damage, brain damage, bone damage and CNS damage, most of which was avoidable if I had not been medically neglected. My disability was 100% preventable with a little bit of medical care instead of doctors continually blowing me off.

Even now, I would be able to work part-time if I had the medical care I needed because my main medical problem is highly treatable but I keep having treatment interrupted or stopped by insurance company doctors overriding my doctor even though I meet the insurance company's written criteria for treatment. Or else the doctor doesn't want to treat me and risk submitting a bill to Medicare or insurance that will either be rejected or underpaid.

The county health clinic in my area now only treats AIDS, Tuberculosis and STD's. The local outreach agency will not help with medical expenses or issues. Every church I have gone to in town says all their aid goes through the local outreach agency and I have to go through them to get help. No agency I have contacted in 2 years of very concerted effort will help me because I "have health coverage" even though my medical expenses often exceed half of my poverty-level income. An agency advertising that they help people who "fall through the cracks" because they are under-insured never even responded to any of my multiple requests for assistance or information. I applied for Medicaid and food stamps and called their office every single day for 3 months, often spending 2 hours on the phone, and never was able to get them to even LOOK at my application for Medicaid one single time and was denied food stamps even though I qualified for emergency same-day assistance on the day I spent 4 hours waiting in their office to hand them the application I had already pulled off the internet and completed at home.

Their application says if you are sick or disabled and can't go into their office to conduct your business they will conduct your intake by phone. That is a bald-faced LIE and is only put on their literature to APPEAR that they are in compliance with the ADA. I made myself very, very ill waiting for hours in their office on multiple days and in the end didn't even get the aid I qualified for. I was told by 2 other Medicaid recipients that they had to hire an attorney and sue the Texas Department of Health and Human Services to get Medicaid. I called the Texas Health and Human Services Ombudsman multiple times. One time I got some temporary action, but never actually received the food stamps and Medicaid I qualify for. Only 58% (statistic according to their own web site) of ELIGIBLE Texans actually manage to get food stamps and that's a so-called "entitlement program" ? The American public is being LIED TO about what our social services do for people.

One day while I was waiting, I listened to one worker training a new worker. She went on and on for at least 20-30 minutes about how everyone who walks in the door lies on their application, submits forged documents and is a scum-bag trying to get assistance they don't qualify for and how you have to "watch them like a hawk".

I left the office without the emergency same-day assistance I qualified for, but with the kind donation by several other applicants of food they had gotten from local food banks because I was too sick after all that to even attempt to go to a food bank. How twisted is this, I thought to myself? The other food stamp applicants who are going hungry themselves are the only people who are helping me?!?

When I had meningitis and severe cognitive problems and couldn't take care of myself I called the Aged and Disabled emergency hotline multiple times. They didn't call me back until about 2 weeks after I started contacting them and by then I had aphasia so bad and my cognitive problems were so bad that I couldn't even talk to them and just hung up. I ended up with a $700 overdrawn bank account and almost got arrested for check theft after getting so hungry from not eating for days that I walked into a grocery store extremely confused and wrote a check that there was no way I could cover, not even knowing what I was doing because of meningitis. It spiraled out of control with the $35 per check bank charges plus additional charges for not covering the overage within 4 or 5 days and there was nothing I could do about it as ill and confused as I was and not being able to talk because of aphasia.

Since becoming totally disabled and having to quit work, I have been alternately accused of being a thief, a criminal, a scum-bag trying to scam the system, a hypochondriac and lazy and unmotivated. I am constantly told that I could work full-time if I "just tried". How many of them go to work with a 101 degree fever, I would like to know? Before becoming totally disabled I was constantly complimented on being responsible, motivated, hard-working and indispensable to the company I worked for. Do all these people honestly think that my moral fiber and character was corrupted overnight when I started running 101 degree fever? Do they think I WANTED to throw away the 15-year career that I poured my blood sweat and tears into?

Right now I can't see a doctor with my Medicare coverage until I get Medicare to concede that they are primary insurance and the disability insurance company that paid me DISABILITY back in 2002 before I even went on Medicare is not current, primary HEALTH insurance coverage.

It has taken me 6 months to find a doctor in my area who will even take Medicare assignment. I am too sick to drive extensive distances for medical care the way I used to and my car is illegal to drive (no insurance and expired stickers) and I live in a suburb of a major metroplex that has no public transportation (they consider it more important to commission works of art by famous sculptors for the fire station patio than to pay for public transportation).

Plus I have to come up with the $135 Medicare deductible before a doctor will even let me in the door, which is impossible since my Social Security doesn't even cover housing plus utilities plus transportation, much less give me money for "extras" like food, clothing and medical expenses.

Does anyone know where I can get a Money Tree seed to grow in my back yard?

Why does the US define "disability" as "your inability to work" (Social Security Administration quote) then base your Social Security Disability payments on work earnings history? What an oxymoron. Unless you become disabled in your sixties, you most likely will not receive enough SSDI to live on!!! My 401k was spent within 13 months after I quit working because of outrageous medical expenses even though I had double insurance coverage.

I have tried to get services from DARS since 2007 to help me work part-time from home and I have yet to even get an intake appointment with them. I went and camped out in their office and still came away without an appointment.

I am sick and tired of hearing that if I improved my attitude I wouldn't have a problem with doctors and social services. BS. I didn't start out with an attitude like this, it developed after 30 years of medical neglect, banging my head against a brick wall while seriously ill trying to get the social services I need and constantly being discriminated against, insulted and taken advantage of because of my disability and illness. Being born with a genetic defect DOES NOT mean I was born with the words "DOORMAT, STEP HERE", on my forehead.

Don't tell me it's "my fault" because I am in victim mode, either. BS. I am a victim because I am being victimized by a system that is seriously broken and people who are arrogant, greedy, selfish and don't give a damn. The fervor in the US against socialized health care, welfare recipients and pain medication (everyone who takes them is a sociopathic drug addict) reminds me of McCarthyism. The US needs to stop blaming the victim. I have done everything possible to help myself and it's not working because THE SYSTEM IS BROKEN, not because of some fault in me.

Anyone who can help me figure out how to get political asylum or compassionate care in another country, I would love to hear from you. I have come to the conclusion that the only way I can survive is to leave the US. In the meantime I will be organizing some major demonstrations at local health facilities, my health permitting. I can't sit by anymore and watch myself and my friends treated this way and just do nothing.

Explore topics in this discussion:

Cancer Surgery Meningitis Back pain Stroke Seizures Fever Aphasia Pain HPV Tuberculosis Depression Diarrhea Stress

23 replies

Bikrbarb

Know how you feel after 4 years. My husband had divorced me for a year before he could come to terms with disease. I went for 4 years waiting for a medical miracle from meds to go back to work. I had been a workaholic for 36+ years and in control of finances and my home. Then no home, no finances, no job and no insurances. Thank God for my family and friends. Even tho my health still slowly goes downhill I make it a piont to find something to make me smile. Before when I was on my feet I had to opportunity of a lifetime. My friends sister had cancer and instead of wishing I could do more to help, I could. As she progressed to the piont she couldn't get out of bed anymore she would have me discribe what it looked like outside the window. It made me look at the day and things in a whole new way. From those days on I try to see all I ever took for granted. Now I don't know when it will be me in that bed. Try to soak up all the positive around you as you can. Even tho it may not CURE you, it will improve oour quality of life. It makes a difference. Will be praying.

Bikrbarb

I do feel it's time all the do-gooders in our country started using American dollars to help Americans for a change. The Mexicans need to go back to their country and let Americans work all those jobs that are to be below us. What the heck do they think America was built on if not hard work? Why do they think it's so hard for people like us that worked all our life to even have to ask for help in the first place? As for all these babies we pay for being born here, need to enforce our laws in place already... Parents need to be naturalized, legal visa, our in deployment of US services to be US citizens. I have a hard atime feeling sorry for California after they went out of their way to let everyone know"come here, we'll pay for you before our own citizens". If it wasn't so frrustrating finding decent medical care or having to beg our own govement for benefits we've paid all our life for it would be different. Enough of my soapbox.

beansy

How about 50 years after brain surgery which caused a rare form of severe visual disability? No one knew anything when I started trying to find help or therapy. No one gave me therapy in 1959. All I can say is I am alive because of a smart neurosurgeon back then.
beans

Sugarbear74

I can hear your pain, but the words are in my Mom's voice. She had years of pain and suffering due to many different things. Due to her dg disc disease in her back, she could no longer work which was hard for her (as she was always a hard worker doing the work no one else would or could do). When she was declined for SSI several times and finally got a lawyer, the state made her go to their doctor 6 hours from her one way. When she got there he apologized and told her he didn't understand why they made her drive 12 hours total when he could tell everything he needed to from her chart. He also told "them" she wasn't able to work and needed to get SSI. He had to write her a prescription for the pain, as sitting for more than an hour was not easy for her. She finally was approved for her SSI, but they only retro paid her for 6 months of the 3 years she had been fighting. Due to the expense of living, she no longer had any credit, savings, or a safe and healthy place to live. She couldn't afford much, but never let us know how much stress and pain she was in. She always had a strong front on for us to see.
Several surgeries later for misc things going wrong that "they" failed to see or listen to from her, she has passed away at 57. I do believe she would still be here today if someone would have seen and treated her as a human and took more than a passing glance at the woman she became because of "them".
In the end it was ARDS that took her officially. I know her chart at the hospital would never say that what actually took her away was the years of pain (mental, physical, and spiritual), the frustration of not being seen by someone who could help her due to no insurance or funds, the lack of belief of her words as she spoke them, the doctors that either didn't have the time, patience or knowledge to treat her (or the ones with a "God complex" could be in there as well) and the mistakes they made, the paper pushers at the various offices she had to deal with to get what they considered "enough" money to live off of, or the depression that set in from dealing with all of this.
To all that read these posts and anyone who is in the same position or is aware that we may all be in this spot someday, speak up! Tell your friends, family, government and anyone who will listen. Make sure to get a support group around you to help you in any way possible. Make sure to let others know what they can do to help you. To those of us who are fortunate enough right now to not be in this situation, pay attention to those around you. You probably know someone who could use your help in some way.
I wish I had been able to do more for my Mom. I may not have been able to change anything, but I will never know. I didn't know how bad things were or how depressed and defeated she felt, because she wouldn't let me. I was not tired from fighting "them" and would have taken my shot. I would have made sure she knew she wasn't alone in the fight. I now have to help someone else, so they don't feel the pain my Mom or our family knows too well.
God, please bless us, for we know not what we do.

foreverinbluejeans

I'm so sorry for you.

In order to get Medicaid and the medical treatment I needed I had to leave my family and move from Indiana to Arizona with 2 suitcases. Indiana is one of the worst Medicaid states in the country and hundreds of people they screw over die every year. I was able to get Medicaid in Arizona in 2 days and see a doctor in a week.

It has been a year and all three of my adult children have moved to Arizona. I'm rebuilding my life. I'm not homeless and I have a 20 year old minivan I share with my youngest son. I'm getting good medical care and I rarely go hungry.

Each state has it's own Medicaid rules. For us the only answer was moving across the country.

dragonfly1980

I know how you feel. I havent been seen by a doctor in 12 years. The medical condition I have hasnt been to nice to me either, I have tumors all over my body in side and out. All over my spine and brain. My legs are going numb, I can hardle get out of bed everyday. Headachs so bad I pass out for days. The state will not cover me and the ins. compaines denie me. I have 4 little kids and I 'm so scared that I wont wake up one day and they will be the ones to find me. The doctors belive that this condition isnt that bad but most of us that have it know better. I know how you feel. I hate the system too.

SickOfBeingSick

Bikrbarb,

The only way things will change is through political action, and for people like me and you with no $$$, that means social disobedience and political demonstrations. I refuse to pay any more medical bills when I am treated in an abusive manner or if I am blown off and don't receive care.

Illegal immigrants in California may be having their babies in CA hospitals, but it is arguable how good of care they are getting. A newspaper article I read when I lived in California quoted an Obstetrician who delivered babies at the maternity ward of an LA hospital that serves mostly immigrants as saying that if you were pregnant and you delivered your baby at the hospital he worked at, your life and the life of your baby would be in jeopardy, and that women were delivering their babies in the hallway.

Glad you were there for your sister. I'm sure you were a great comfort to her. Caring for each other and standing up for each other is the only way things will change.

Cathy

SickOfBeingSick

Hi Beansy,

Thank goodness for the good neurosurgeon who treated you. I also would not be alive today if it were not for the doctor who finally gave me effective treatment after being sick for 9 months with a serious tonsillitis infection so bad pieces of flesh were sloughing off my throat.

There are some good doctors out there. Too many of them, though, are refusing to accept medicare because of reimbursement rates and refusing to accept insurance because insurance companies try to dictate the care they are supposed to give.

We end up with a system where only the rich and/or those who are relatively healthy can afford good health care.

Cathy

SickOfBeingSick

Sugarbear,

Your story touched my heart. I am so sorry for what you and your mother went through.

I hope that when I get my nonprofit organization going you will join our e-mail list. I would be proud to have you.

Cathy

SickOfBeingSick

Hi foreverinbluejeans,

I'm so glad you are in a state where you can get the support you need. It's wonderful that your children moved there also.

My two adult children are in Idaho and California. They have no desire to be in Texas and I don't want to move since I own a home here. No way I could buy a house now with my destroyed credit. I miss them terribly and can't travel to see them, no money and too sick.

Do you get IVIG on Medicaid? Maybe I should check into whether I could get IVIG on Medicaid here in Texas. Would be worth the work of the legal suit I have been told by two other Medicaid recipients that I would have to file in order to receive Medicaid.

I want to collect statistics on things like Medicaid and food stamps. Then maybe when I start my non-profit organization, we can have a wall of shame and a wall of fame with states that do well and states that do poorly (unfortunately, I wonder if any states at all would belong on the wall of fame?)

Cathy

SickOfBeingSick

Hi Dragonfly,

Wow, 12 years is a long time to not see a doctor. And I thought my 7 months was a long time. I read some of your other posts about not being able to get medical care and I wish I had some solution or possible option for you to try, but I don't. You are in a very tough situation.

I hope you and some of the other people I have "met" on this forum will write a testimonial for me about your experiences for my new protest website (with anonymity).

This month I will run out of almost every medication I take (about 10 of the 15 or so) and I can't get them refilled without seeing a doctor which I can't do right now with no Medicaid, no money for the Medicare co-pay and and Medicare insisting they are secondary insurance when they're not. Have already run out of about 5 or 6 medications already.

It's not going to be pretty when I can't get these meds because my body is so broken from so many years of medical neglect that the meds patch things together enough to at least keep me functioning at a very low minimum. Took many, many years to come up with a "cocktail" that works.

Cathy

White_Rabbit

I can certainly empathize! Being new to this group & having not yet shared my story, all I can say is that I spend days in tears with similar outcomes. My illness is classified as rare and there are rarely any qualified doctors to treat it. Have you tried contacting the ACLU?

I wish you all the best and sincerely hope that things get better.

SickOfBeingSick

Hi White Rabbit,

I think we need a new medical specialization - "Rare and Undiagnosed Diseases". Doctors are taught in medical school, "Look for the horse first, not the zebra". Too many of them take this to mean "zebras don't exist".

This new specialty would consist of doctors specially trained to "look for the zebra first", since their patients have already spent years seeing doctors who are looking for a horse that doesn't exist, and ignoring the zebra in front of them.

Rather than patients and GP's having to "guess" which specialists out of the gazillion out there would be able to help, these new specialists would assist in diagnosing and identifying rare disorders across specialties. Once the diagnosis, or an approximate diagnosis is made, the patient could be referred to a doctor or specialist that might actually help them.

And in answer to your question, yes, I did at one point contact the ACLU about an issue I haven't talked about on this forum. It has been too traumatic for me even to discuss. They never even acknowledged my letter.

I finally filed a lawsuit without an attorney, after being told I had an excellent case but there wasn't time for an attorney to prepare a petition (I had been too ill just before the statute of limitations ran out to hire an attorney). I lost the case in the lower court before it was even tried because I didn't have $5000 to $10000 US dollars to hire a forensic expert to "prove to the court" that my case wasn't frivolous before proceeding.

Once I filed the petition, at a horrendous expense to myself medically and physically and after borrowing most of the money necessary from a family member, I was told over and over again by various attorneys that I had a great case, I could win it, etc, etc, but I couldn't get an attorney to actually take it thanks to "malpractice reforms" in the state of Texas or because they didn't want to take a case already in progress.

Also, every single legal clinic in town has slammed the door shut in my face as soon as I tell them my case took place in a medical setting. Even when I say I just need some basic information on how to get case references, do research, find statutes, etc. they still refuse to help me because my case is medically-related. If I try not to give them this bit of information, they invariably ask pointed questions about my case that I can't avoid and have to answer before I can attend their clinics.

Looking for pro-bono help on Google (specifying Texas only!) I discovered that if I were in just about any other country in the world, Australia, Canada, France, the UK, the Netherlands, New Zealand, I would have had an attorney assigned to me for free in my situation. One rape victim in Texas even lost her case because the rape took place in a medical facility so she was required by the court to produce the $5000 to $10000 forensic expert report testifying that the physicians actions violated the "standard of care" (it takes a forensic expert to determine that in a case of rape?) and she couldn't do so before the 120-day deadline.

So much for "justice for all" in this country. More double-talk, lies and empty cliches. Justice exists only for those with deep pockets or large settlements attached to their lawsuits. Maybe if I had died (which I almost did) my family could have won a wrongful death suit.

I have been almost spit on numerous times for "increasing the cost of health care" by filing a lawsuit. What a bunch of BS. The US public is brainwashed by the Medical Malpractice Insurance industry to believe that lawsuits are driving the cost of medical care up. One study estimated that malpractice premiums only amount to less than 1% of our US medical costs.

I have been harmed over and over again by "neglect" and by doctors who thought they were giving me the right medical treatment when they weren't. I only filed suit in this particular case because what was done to me was very deliberate, malicious, and illegal, like something out of a horror movie. I am considering contacting Amnesty International next.

Cathy

Syd_Mum

I am horrified in reading this. Basic medical needs not being taken care of and the emotional and mental abuse ones are going through, not even mentioning the physical side to it. It makes you wonder, with all the knowledge and how far civilisation has come, where has it left the individuals.

If a mother treated a child as the medical system treats its patients, well put it this way, those same government organisations would be crucifying them.

Tevsmom

I hear all the frustration in all your posts, my heart aches for you all. I am right there with you, too. But I do have to say, in my state, I have been able to get food stamps-although it has dropped over $400 this month, and I had medicaid coverage-which has changed this month also. I have had many problems with drs, hospitals and others treating me or not treating, me properly for the past 5 yrs. They don't listen to me, they assume or jump to the wrong conclusions immediately, and now I have permanent damage. I too have a good case for a lawsuit, but have to have a dx to seal it tight. Until the dx comes then I will just have to collect my notes, proof and continue to be treated as they feel. I must say I do have the Best pcp one could ask for, he isn't involved in my bad care at all-he is very caring, listens and trys everything he can to help. I have been perm disabled since 05, was denied ss, and was just denied disability medicaid-will be fighting that one in the near future. On top of my health issues, my hubby is unemployed and this family of 4 was given notice to vacate the home we have been living in, by a family member none the less. Life is going to be better soon, with a couple less family members to worry about too.
As the saying goes, God won't give you more then you can handle. I just wish he would give more to the other family members for once.
Sick--have you tried to contact your gov people? I Pray for an easy road for you in the future, and for All others dealing with health issues.

SickOfBeingSick

Hi Syd Mum,

I love your analogy that if a mother treated her child the way the medical system and social services have treated most of us in the US, these same government organizations would be crucifying them. You are so right!

I am spending a lot of my time writing, planning and laying the groundwork for some serious political protests.

That analogy is going in my notebook for future use.

Thx,
Cathy

SickOfBeingSick

Hi Tevsmom,

Glad to hear you are getting some social services, even if they have been seriously cut back.

I can't even count the number of times doctors have gone way off in the weeds based on some small part of the overall picture or some really off-base medical (or non-medical discriminatory) assumption. When I gently and as diplomatically as possible try to pull them back in the right direction, pointing out lab results that totally contradict what they are saying, other diagnoses that fit the picture so much better, it's like they don't know how to think and engage in an analytical process and decision making.

Sometimes I wonder how they got through medical school at all and did they park their brains at the door and forget to pick them up when they graduated?

I have 4 years of graduate education in sciences and worked in research labs for years. If I had engaged in the shoddy analytical processes that they employ, I NEVER would have made it through school, writing a thesis and my comprehensive exams and would have been immediately fired from my research positions. And these are the people we are entrusting our medical care to? I just don't get it.

Cathy

Sugarbear74

To everyone here, thank you for sharing your painful stories. If only I had seen these a couple years ago, I may have been able to intervene on my Mom's behalf. Thank you for coming together and reaching out to help each other to the best of our abilities. This is what we are supposed to do, help each other in a time of need.
Cathy, I would love to be on your email list, just let me know.
Tevsmom, the saying you and my Mom have in common is so true. My Mom used to say it like this : "I know they say The Lord won't give you more than you can handle, I just wish he didn't trust me so much!"
All I can say is it isn't for us to judge, they will be judged by someone much more powerful than us. We are supposed to forgive others for their ways, but this doesn't mean forget or excuse them. We need to do something to prevent further abuse to our people.
Thank you all again for sharing, hopefully we will find a way to change the future for our loved ones.

SickOfBeingSick

Hi UrsaBear,

I am receiving SSDI. I used to be able to work a few hours here and there on my computer at home and earn a little bit of money but not enough to disqualify me from SSDI. I was a computer programmer before becoming too sick to work. Since not getting the medical care I need, I can't even do that anymore.

When I was refused Medicaid, it wasn't because I didn't qualify. I had looked at the criteria pretty carefully and I believe I would have qualified, although I'm not sure. They just wouldn't even look at or review my application. I called them for 3 months solid, sometimes being on the phone for 2 hours per day, and in the end they never once even looked at my application.

I was told by two people receiving Medicaid in this state that they had to hire a lawyer and sue Health and Human Services to receive Medicaid benefits. I don't have the money to do that and I'm too sick anymore for 2 hour stints on the phone or to go into their office.

Cathy

SickOfBeingSick

Hi Tevsmom,

I think I was half brain-dead when I responded to you. It's been a while, so I hope you read this. I wanted to add, how awful about your family and housing situation. Please keep us updating on how you are doing with this. It must be incredibly stressful for you.

Cathy

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