Again, Mr Romney, you are speaking from your gilded gated "every need met" world. Allow me to introduce you to mine.
I am almost 60, an SLE patient who has no insurance coverage. I was hospitalized in May 2011 with low platelets (~37,000 when normal is !50,000-400,000+. I was in danger of bleeding to death internally. I went to the county charity clinic, where I met with the most incredible incompetence. Mostly, they just don't treat the poor patients with the same kind of respect and concern I got/get from doctors I pay. I have retained my private rheumatologist, although I didn't go for a year, and that's why we didn't catch the platelet issue until it was so severe.
Now I cannot take the medication that was keeping my lupus at bay because it destroys platelets. I also cannot take aspirin or NSAIDs such as Ibuprofen for the pain in my joints. Nor can I afford the medication I need, Ben Lysta. Why? It's $2000-$3000 a pop, and the first three doses are to be taken 2 weeks apart and then once a month after that. I am still taking prednisone, which isn't really controlling my lupus, and my doctor estimates will take 5 years off my life.
I have been turned repeatedly for SSDI, despite the fact I cannot walk more than about 100', suffer from exhaustion so badly that I often require 12-14 hours of sleep, and suffer pain in my joints on a daily basis. Right now I am taking 50 mg of Tramadol 4 times a day to get through the days. I'm not old enough for SS & Medicare, and if Congress raises the age requirement, I won't live long enough to collect. Even if they don't, I might not live long enough to collect.
My husband has high blood pressure, and he is not covered either. We lost our insurance when your friends the Koch brothers outsourced his job to India in 2009. He has not found a job. The first year, he didn't even get a nibble at anything suitable. So he took care of my late 80s mother and me, the house and the yard, the shopping, the laundry, theerrands. Mother died 21 November 10, and in the midst of her final days and the funeral, he got a call from a headhunter, which he missed because he was ferrying me around and sitting with my mother in ICU, and taking care of my needs. By the time he got the message, it was too late.
My brother is an attorney, and he has been paying all our bills, including house maintenance and some modifications for my condition, and supplying all our basic needs. I have a computer because he believes, that since I am often housebound, I need the intellectual stimulation. We also have a television because we never go to movies unless we get free tickets. He has also been paying for my medical care. He is 62 and about to retire from the law.
I had a friend who died from a curable cancer in 2009. He had no insurance, and could not pay for the ongoing treatment. So he got a pain prescription and died a long slow death.
My cousin, who is bipolar, has a heart condition, and is in charge of her 58 year old mentally challenged sister, had a breakdown not long before their Alzheimer's patient mother died. She had no insurance, and despite her pleas, the EMS took her to the NEAREST hospital instead of the charity one. They said that was their policy. She now has a $25,000 bill from that NEAREST hospital, an income under $20,000 a year, and goes to the charity clinic run by the county. If she has a heart attack, the EMS will take her to the NEAREST hospital, where she will once again incur charges she cannot afford. The NEAREST hospital to her house is about 5 blocks away and a for-profit institution. It's also the nearest one to my home. So guess where the EMS would take my husband or myself if we have a medical crisis at home?
We have elected to die rather than have that happen. If we were eligible for medical care under your plan, we would not be able to afford the premiums. the only quote I have gotten is close to $2000 a month. So yes, Mr Romney, people ARE dying for lack of insurance, and it is not because we have "chosen" not to be covered. You simply do not have any concept of the realities of live for the unemployed, the disabled, the underemployed, the working poor, or anyone in the REAL middle class (which, statistically is about $30,000 to $80,000, NOT those making $150K - $500K., as you seem to think.
Look through my posts. I invited your equally clueless wife to come viist me some montjhs ago. I promise you, we could give an education you've never had.
If you're wondering where I've been lately, I have been outside working to bring my yard into compliance with the desires of my "neighbors." I use this term exceedingly loosely because there is nothing truly neighborly about them. Mind you, I wouldn't care if they went about their lives and let me go about mine. What I object to is that they never come to see if they can help, they just cowardly tattle to the teacher (in this case the City of Houston) when I don't meet their OCD, anally retentive, control issues sense of what things could be like.
To be honest, I don't many of them by name. What I do know is that most of them arrived in this neighborhood after I did. When I arrived in June of 1957, most of this area was still woods, open fields, or farm land. I heard coyotes howling at night. there were bats swooping out of the sky to eat the mosquitoes, lightening bugs, and yes the odd rattlesnake in our yard. What do you expect? Immediately behind our house were acres of piney woods. I reckon I learned to dispatch a rattler to meet his maker with a garden hoe by the time I was 6.
These people can call in anonymously and get me in trouble -- threats of liens and big bills from the city to clean up my land. Let me make it clear. I don't have 2 or three junked up cars sitting out front. It's just that we had a drought last summer, which allowed bermuda grass (where the heck that came from, I have no idea) and some weeds (ditto -- I know I didn't sow 'em) that got GASP över nine inches tall! Some weeds, not a whole yard full. The grass was about three inches tall. We have been battling to get the yard in shape ever since last fall when the drought and pine bark beetles took out six of the large pines which were living here when I arrived.
I cannot describe how seriously the stress of the threat, along with the hours of physical labor, has impacted my health. I'm not supposed to be out in the sun. So I found shaded areas where I could work. We do not have thousands of dollars to spend on this project, so my husband and I are doing it mostly by ourselves. My brother did provide some money to pay for tools and maintenance supplies for them, and for some temporary labor. The latest purchase today was a 48"two man crosscut saw. We needed this to cut up the REALLY big logs. These are 6-8' lengths of loblolly pines, all upwards of 55 years old. Some of them were probably in the 75-100 year old range.
What I can tell you is that every joint in my body aches, and I am so tired that I fell asleep outside several times over the last couple of days while working. I have chopped two or three brush piles into mulch. What looks like a huge brush pile reduces to about 1 cubic yard of mulch. I did this with a set of pruning shears. I have also sawn up, with a bow saw, about a dozen or so branches 3-6" in diameter. We did find a bargain on a chipper/shredder which takes anything up to 1-1/4"diameter, so I spent a few hours feeding that as well. Anything over 6" and under a foot in diameter gets the chainsaw. My husband does that. Anything over a foot is gonna get the crosscut saw.
There's another solid week, two weeks of work to be done, and I'd appreciate any prayers you care to offer for the strength to keep on keeping on. I was barely walking this morning. I worked until the bottom dropped out of the clouds and then I came inside. I gotta admit that I didn't get as much work done today, because I hurt so badly every time I pull the pruning shears shut to cut a limb that I have to stop and will the pain away.
I have decided a couple of things. One, I am going to find the money to put privacy screening -- like they have on tennis courts -- around my backyard. I have a couple to the south of me that have been calling the city on us for forty years. Complete assholes the pair of them. She's a nosey gossipy pretentious cow whom I have done my best to avoid since her family moved in around 1960. He's so compulsive he went outdoors in very hot weather to mow his 1 1/2"buzz cut lawn to 1/2"one year and had a heart attack. I don't want this for my husband. They also violated the city's water rationing last year to keep their freaking lawn green! I resented this because when I went to take a shower I was lucky to get water at all. Did I call the city on them? Noooooooo. Nor on the other neighbors who were also violating the restrictions. I'm not the kind of person who tattles, snitches or looks for ways to make life difficult for other people, even when they do it to me. However, when I take all these sawn up pieces of my old friends the trees to create bed edgings, I am going to place some in this pattern facing their plate glass window: n9m. Maybe I'll make it a recurring pattern. They steal my Meyer lemons every year anyway.
Behind me is another jewel of a neighbor. He came to the fence to talk to my husband one day. He wanted us to cut down all the yaupons that make up our back hedge "because they drop leaves in my yard." "It sure would help me out," he says. When my husband told me, I gave a few minutes thought to remembering what he'd done to help us out. Since I came up empty, I let my husband's answer to them stand "Feel free to cut off the branches on your side of the fence."" This OCD also wanted us to cut down a pine tree in OUR YARD because it dropped needles on his yard. We offered to rake them up, but he said no, that tree was going to come down in a windstorm some day, and it should come down. He'd pay for it. This exchange occurred while we were cutting down the dead trees and that was one of the two living pines left. Then he started in ragging us about the pine logs two days after they were cut. Since he's not my boss, or my father, or anyone whose opinion about anything means a damn to me, I ignored him.. Privacy screen him out too!.
To the north, the neighbors aren't so bad. Her grandfather was a pain in the ass when he lived there, but we made our peace with her mother, and she and her husband, while they have some annoyingly noisy dogs seem to be pretty good hearted live and let live people.
The other thing I decided is that modern Americans are woosies that our Founding Fathers would be ashamed of. I have a deeper appreciation of those brave souls who entered the deep woods, swamps, and such over Carolina, Virginia, Georgia way and hacked down all those trees by hand and made them into log cabins, tool sheds, barns and the like. It's damned hard work! And I didn't have to take down the 90' trees by hand either! I'm trying to imagine what would have happened in 1730 if someone had called all his neighbors together and said "Let's implement something called deed restrictions that mandate everyone having a St. Augustine lawn in front of their cabin, and not letting any weeds get over 9" tall on their land nor having any undergrowth over 9"tall. Oh and no dead, decaying vegetable matter such as leaves or pine needles or fallen twigs." I swear I hear laughter and calls for commitment to the state asylum for the insane!
On the bright side, I got to watch a number of lovely songbirds flitting about my trees in my little glade on my NW corner. Lizards, skinks, anoles, and even a bunny live in my overgrown area. Not a pet rabbit, but a wild one. I haven't seen much of him while I've been working ; I think he's afraid of us. My husband put out some rabbit food for him though. Sadly, my bees have departed, probably as a result of the heavy spring rains. I have a clematis virginia, known also as Virgin's Bower Flower on my north gate, in full, luscious bloom.
I've also made a couple of vine birdhouses when I take a break. One-and-a-half really, but I'll get it finished. Now I have to get in bed before I fall apart.
I just spent $471 on a doctor's office visit & lab work. Before the month is out, I will spend another $460, and that doesn't include $50 worth of prescriptions. Prescriptions which don't control the lupus any more. I don't even see a family practice Dr any more ($120 per office visit) nor see the eye doctor every 6 months as I should because one of my meds (Hydroxychloroquine) can cause deposits in my eyes. I need new glasses too, but am doing with reading glasses from Big Lots (3 pr/$5). I haven't had a pap smear in years. Nor have I had a colonoscopy, as I should have. I haven't been to the dentist in over three years. I've quit testing my blood sugar on a daily basis because (a) I simply cannot afford the test strips any more,and (b) the prednisone I take raises blood sugar levels such that I feel it is futile to try to control it.
The good news is that the $460 more that I will spend will cover a panel of 6 blood tests that serve as a substitute for the $2000-7000+ liver biopsy I have been putting off until my platelet count got high enough not to risk bleeding to death, and six other tests, including an electrocardiogram. On lab quoted me $378 for the blood tests. The second quoted me $341. What I figured out is that if I get some of them from the first lab, and some of them from the second lab, they will total $311.. The other panel of 6 ultrasound tests is $149.
Last week 6 July) my local paper had an article about Texas's report on health care, I posted the results. Allow me to repeat it here for those who missed it.
Todays Houston Chronicle': Federal Report ranks state worst in nation for services provided The headline? TEXAS
HEALTH CARE BASHED. World ranked medical center and weak or very weak on 9 of 12 health care delivery
categories. Of course part of that is that we have the nation's highest uninsured populace -- 25% VERY WEAK on
home health care for elderly & disabled who live at home, for diabetes care
BEST SCORE (average) on mortality & potentially avoidable complications of PRIVATELY INSURED PERSONS
BELOW AVERAGE on those for uninsured & those covered by Medicare & Medicaid
DEAD LAST on caring for breast cancer patients under 70
Rick Perry's press secretary's response? "Texas will continue to fight the federal government for more flexibility to
meet our health care challenges, which is crucial to effectively improving our health care system."
Today's paper (9 July) offers this: Fewer Texas doctors taking poor patients
-- Doctors accepting new patients on Medicaid has dropped from 67% in 2000 to 42% in 2010 to 31% this year. This is
due to the Texas Medicaid program reimbursing the doctors at low rates.
-- 27% of Texas patients lack insurance, making Texas last in the nation in % insured.
-- For Medicare, the % of Drs accepting new patients relying solely on it went from 78%in 2000 to 66% in 2010 to 58%
this year. The federally managed Medicare pays better than Medicaid, administered by the state. This time the drop
is attributed to onerous Paperwork.
-- only 46% now accept poor children covered by CHIP
-- Texas medical students leave to take up residencies elsewhere because the state doesn't fund enough positions.
-- The number of primary care physicians in Texas is 72/1000,000 in urban areas, and 52 per 100,000 in rural areas.
Thr national average is 128/100,000. On the other hand the number of obstetricians has grown. Many doctors are
slated to retire over the next 10 years.
Check out these news announcements and stories. Pay attention to the TIMING.
Aug 26, 2009 ... HOUSTON – Gov. Rick Perry today highlighted Texas' efforts to combat the state nursing shortage by further investing in nursing education.
Jul 14, 2010 ... Texas is facing a shortage of 71000 nurses by 2020 as demand continues to outpace supply, the Texas Department of State Health Services ...
Jul 13, 2010 ... The state is facing a shortage of 71000 nurses by 2020 as demand continues to outpace supply, the Texas Department of State Health Services ...
Fall of 2010 ELECTION IN WHICH PERRY IS RE-ELECTED
Aug 29, 2011 ... Day 29: The state has dramatically reduced support for nursing education, meaning Texas will continue to face a critical shortage of registered ...
Mar 30, 2012 ... In response to mounting concern about Texas' nurse shortage, the Texas Legislature created TheTexas Center for Nursing Workforce Studies ...
This is the best medical system in the world?
If you have been reading my blog, or any of my pages, or my Facebook page, you know that I have SLE (Systemic Lupus Erythmatosis). What you may not realize is that this is primarily "a woman's disease," as 90% of the patients are women. Most of them are 15 -45, the childbearing years. For some enlightening information about pregnancy and lupus, please read this study in Japan about pregnancy outcomes and lupus .Women of color, across the board have higher rates than white women. I once had a former Texas benefits evaluator tell me that "lupus is a made up disease by people who are too lazy to work." To me, it was clear he was referring to Black women. Black women have higher death rates from breast and cervical cancer, higher rates of STD's and teen pregnancies, higher infant mortanlity. SOURCE: Debunking the myth. Black women, Hispanic women, Native American women all have higher rates of lupus. Black women have more severe outcomes more often. Poor women without health insurance have a harder time getting the help they need to treat lupus. SOURCE: Lupus Fact sheetFor some information about lupus symptoms in general, please read this article about two lupus patients. My diagnosis was originally made by a gynecologist to whom I had gone for a simple pap smear. At the time, I had health insurance. I no longer have health insurance, and my best option for pap smears is Planned Parenthood. Read one woman's story about not affording to go anywhere but Planned Parenthood. Please make yourself aware of two FACTS:
1. NOT ONE TAXPAYER DOLLAR GOES TO ABORTION. That has been prohibited since the 1970s.
2. Abortions are only 3% of their services FACT SHEET HERE
Finally, let's talk about SOCIAL SECURITY and Disability and Social Security Supplemental Income. I worked from age 15 until about 40. I've been fighting to get SSDI so I can get Medicare to cover my lupus medications. First they told me I ought to be able to work (in 1995) because I am educated. Know many employers who want employees who fall asleep on the job, or who miss work frequently because they cannot drag themselves out of bed and stay awake long enough to bathe, dress, and get to work? Or who catch the flu and the miss weeks because the immunosuppressant drugs they take for lupus don't fight the flu well and leave them with bronchitism pneumonia and a lupus flare in which their joints swell and cause agonizing pain? If so, please send those employers my way! I'd love to work, use my brain again for pay. Of course, it has to be low stress and pretty free of deadlines, because stress makes my lupus worse, and I never know which day I'm going to wake up and be unable to stay awake -- which makes it difficult to meet those deadlines. See this blog
for another person's perspective.
The next time I applied for SSI/SSDI they told me my $3000+ savings account made me ineligible for SSI and I no longer had enough qualifying quarters for SSDI. I appealled and they told me I wasn't disabled! NOIT DISABLED? I cannot shop without either my husband pushing me in the wheelchair or an electric cart. Some days my knees hurt so badly the 8' from my bed to the toilet has me in tears. I cannot stand in lines for more than 30 seconds without the knees and hips begging me to sit down. That's not disabled?
Now their story is that we cannot prove I was disabled WHILE I STILL HAD ENOUGH QUALIFYING QUARTERS. THEY have the 1995 records with the doctors names, but OOPS I can no longer get those records because the doctors who made the disagnosis, and who treated me, destroyed the records 10 years after my last visit. I'm SURE those records are in the SS records; they just demand that I produce them, knowing I can't.
So now I'm still 5 years too young for SS and Medicare. What if they raise the retirement age? First how will we tap into our retirement accounts without penalty to pay for medical expenses? I will NEVER see my SS money that I paid into the system all those years I worked (sometimes at 2-3 jobs at a time!). I WILL NOT LIVE LONG ENOUGH!
Let me repeat that I WILL NOT LIVE LONG ENOUGH! I can no longer take Methotrexate because my platelet levels drop too low and I am in danger of bleeding to death internally. The prednisone I have been on for over a year now will, according to my rheumatologist "take five years off your life." It also induced Type II diabetes, which is implicated in heart disease, even if I didn't have the extra clotting factor from lupus. The Hydorxychloroquine (Plaquanil) no longer controls the disease by itself. I also cannot take aspirin, NSAIDs like ibuprofen. So I take ginger and turmeric for the constant pain. Some days it works, some days it doesn't work so well. I need Ben Lysta, according to my rheumatologist, but she's not going to administer it. It's about $2000-$3000 a pop. I think it's once a month. I tried to get onto a drug trial, but the diagnoses (both of which I think are wrong) the county hospital gave me of non-alcoholic cirrhosis and heart failure keep me out of the trial. I need a liver biopsy to rule out the cirrhosis, and an echocarcdogram for the heart failure.
My only hope is Obama's health care plan, because I could not be denied coverage for pre-existing conditions. If I cannot afford the private health insurance or the high risk pool insurance, I could, as I understand it, get Medicare without having to be on SS, SSI, or SSDI. So think twice before you pull the lever for someone who wants to repeal Obamacare; that lever pull will be a death sentence for me and many others with my illness or others like it. Of course, it you want to be a good, compassionate Christian, you can send me money at PayPal to help with my medical expenses. Leave a comment on this website and I'll send you my email. They are. or would, if I were seeing the doctors I need to see and taking the meds I need to take run from $3000 in a good year for routine meds and visits and tests to upwards of $24,000 if I had to be hospitalized. My brother is currently supporting us and paying our medical expenses. He's nearing retirement age. He spent years paying for our mother's needs because her SS didn't cover the utilities, food, out of pocket medical expenses. Now he has us, and his own family.
SO please look into your heart and see if you want to pull my plug by voting to kill "Obamacare
This is the tale of two households. Both have suffered the loss of their mother within the last couple of years. Both consist of two people. There the similarities pretty much stop.
Household A: A man & wife. She is disabled and he is "long-term unemployed." Both are under 60. They drive a car (low end) bought, owned and insured by her brother. Their brother provides them with in-kind goods: food, clothing, utilities, home maintenance (the part the husband cannot do himself, and he's pretty talented at it)., auto maintenance, gasoline, etc. Technically, they qualify for food stamps, which his $250K republican mother suggested they apply for (instead of offering help to her son in the form of a check) because "I help my workers (farm) get them all the time." NOTE: the husband is pretty sure these are mostly illegal migrant workers. They have not bothered to apply, however, because in Texas, a married couple with no resident children, on the average, receives food stamps for three months only, and the check is pretty small. The maximum they could receive them, from their understanding, is sic months anyway. Not worth the time and effort put into the application process. When I say "pretty small" I mean around $100 a month. Instead, they grow fruits and vegetables (organically), herbs, shop sales, using coupons. The dryer broke; the husband fixed it. He mows the grass, despite having high blood pressure and living in Houston, where it already 80+ every day. They bought grass plugs and re-sodded the lawn after the recent drought themselves. Yes, I mean they went outside, dug up the hard packed clay, put in sand and manure and planted the plugs. six they did manually. Then they found a tiller on sale for $129.99 + shipping, the brother paid for it, and the rest they used the tiller to plant. Mind you, they aren't re-sodding from lawn edge to lawn edge, just placing plugs in the worst spot about 6" apart, expecting the plugs to grow and fill in the sod. They do not have a working dishwasher. They eat beans, soups, make their own stock from the chickens & vegetables they cook, wear very inexpensive clothing (the most expensive thing in their wardrobe was a winter jacket at $29.99. They have low energy light bulbs, conserve electricity (and going with very little air conditioning is not always pleasant), conserve water, collecting roof run off for their garden and lawn. They have a "full charity" card at the county hospital/clinic system, but they do not use the services routinely. They got it for an emergency situation only. They have a small inheritance/saving account (originally less than $15,000 and now just under $3000. No maid, no gardener, the only outside help with the housework being a friend of the wife's. The wife engages in online activities to earn money, win prizes, sell used goods, and generate any income she can. She gets free samples, haunts clearance racks and "as is" sections. So far this year, she has scored $500 in a grocery gift card, two "free Big Macs for a year with the purchase of a value meal" cards, about $40 in free birthday food for the two of them, a $5 Walmart gift card, a $10 prepaid American Express gift card, and a lot of free food through the use of coupons combined with sales and store discounts. They have also donated to Toys for Tots, the local food bank, disaster relief clothing drives, Salvation army clothing drives, and other charities through "click and we will donate" drives, the purchase of brands which donate part of the purchase price to charity. They routinely pick up school supplies at little to no cost to donate to the local schools, take their newspaper and cardboard to the school for its paper drive, save and donate Box Tops for Education, Labels for Education, and other such programs. They randomly give food, shelter, rides, coupons, and such to the homeless, those with less than they have, family, friends, & neighbors. Expired coupons go to the American miliitary overseas. They do not attend church. They vote Democratic mostly, and consider themselves to be liberals.
Household B: Two sisters, one of whom is mentally challenged and autistic. They own & live in a house on a piece of property worth over a million dollars, One is almost 65, works as a substitute teacher and is applying for full-time jobs. She is bipolar. The other receives SSI and is applying for food stamps, and has a small job working at Ellington Field one Saturday and one Sunday a month (the costs to get her there and back uses up a lot of her earnings). There is a trust fund for them. They have cards to the county hospital/clinic system, although not at "full charity," but the next step up (instead of $4 per dr visit, they pay something like $8. They use the services routinely. including the pharmacy where their prescriptions are $8 (instead of $30 at WalMart like household A's, which the brother pays). They have someone to cut the grass. If their dryer goes out, they call a serviceman. Recently, the one who drives had a wreck, totaling her Toyota Camry Hybrid, which she replaced with a brand new Toyota Camry hybrid. Guess who picked her up at the accident scene, took her home to call the insurance company, out to the dealership to get a loaner, and to the hospital to be checked out? She did give them $5 for parking, which was $10, and also treated them to a lecture about "taking the money out of the mouths of a retarded woman and her unemployed sister." Note that earlier this year, she was hospitalized and they drove her sister out to visit her, ferried her cell phone (a Verizon plan with a monthly fee instead of the prepaid rarely used cells Household A uses), drove the younger sister to visit their (then still living) mother in the hospital, to work, to the grocery store, picked the older sister up from the hospital, took her to get her car from the shop, followed her home to make sure she was safe -- never asking for a penny, never being offered one. For this they get a lecture? Twice they have had to pick the sister up from the house and house her overnight because the two of them got into a fight, once they were called by the police to do so. This at a cost to of about $200 (which the brother paid). Twice now they have driven the mentally challenged woman to her job and picked her up (both days she worked). These sisters don't use coupons, discounts, store loyalty points for gas -- nothing. It's "too much trouble." Constantly the older sister moans about their impoverishment to household A. The mentally challenged sister uses the Metro-lift service, except when she needs to travel outside its service hours. They have "scholarships" to the local Y and work out regularly. They grow nothing, and the younger sister does all the housework. They eat frozen dinners, go to church across town, sing in the choir, and do what they want to do. the older sister says an Internet connection is too expensive, while she wears her late mother's diamond rings easily worth $10,000 and wears designer clothing. Only one votes, but she votes Republican always and talks down about "people on welfare." Hellooooo?
I give up. The system is crazy. Can anyone explain it to me?
I had a particularly disturbing encounter with the Harris County Hospital District today. When I visited the clinic in late December, the physician referred me for echocardiogram and gastroenterology consultions. The gastroenterology folks called today to set up an appointment. They don't have anything until March 13. My appointment with the doctor was made for 1/26, without anyone asking if I had any input on the date. What is the point of going to see the doctor (and by the way, they scheduled me to see the third different doctor I would see in three visits) without test results? I asked the woman who called, and she suggested I call my doctor and ask for a provider-to-provider urgent appointment request. When I did that, his nurse informed me they could do no such thing. Eventually I got Ask My Nuirse, and she triaged me to see a doctor within 24 hours, and said she was going to call the doctor's office and make that recommendation. I'm still waiting for the call back.
Now here is why this is so disturbing. First this entire process took about four hours as I was shunted from one number to another, waiting through long robo-operator menus (which are incredibly oddly organized). The other, more disturbing factor is that THE MAIN REASON I WAS HOSPITALIZED IN MID-MAY was abdominal distress of unknown causes. My private rheumatologist,, who is seeing me for very low fees (lower than the bill I got from the Dr at the public health clinic!) thought I might have Crohn's disease, an ulcer or ulcerative colitis. Since my blood platelets were very low (37000 when normal is 150,000 -400,000+), if an ulcer or a varices began bleeding, I could have bled to death in minutes. After I was admitted to the main hospital in the HCHD system, did anyone investigate those issues? As far as I know, they didn't even test for blood in my stools. They certainly didn't run the gastro test/examination I'm STILL trying to get. The good news is my blood platelets are up. The bad news is that they are still on in the 80,000 - 90,000 range, and I am experiencing sudden bruising and what I suspect to be small amounts of blood in my stools. I asked this question: If I don't have the test until mid-March, and then I won't be able to get the results or treatment of any kind until they manage to find some time to give me an appointment I can make, how is this healthcare? Their response "go to the ER." I asked "Will the ER run the gastro test if I make it to the hospital? Should I go NOW or wait until I'm possibly bleeding out?" THAT question is what got the nurse to recommend the "within 24 hours" triage. Half of that 24 hours has passed with no call. If they call tomorrow, I have no way to get to the Dr's office, since my husband is still working 9-3 at his temporary holiday just above min wage job, and we need the income.
Ron Paul wants religious hospitals and other charity hospitals (like Shriner's) to supply healthcare for the poor. To him, I'd like to ask this question: if they have the capacity and manpower to do that, WHY ARE THEY NOT ALREADY DOING IT? IF they CAN and WILL, why did we ever have to create a public hospital system paid for by taxpayers? Would it be BETTER? I suspect not.
I could write an entire systems analysis report on what's wrong with the HCHD facilities. From their admissions process to the telephone system. What's eating the money is not patient care. It's bureaucracy. Making an appointment for a patient without any consultation as the scheduling is not only disrespectful of the patient's dignity, but disrespectful of the patient's schedule and life. I wonder what % of the staff time is spent moving these casually made appointments? I have been assigned a Primary Care Physician whom I have NEVER seen, and I was not scheduled to see him this upcoming appointment either. I have to submit a form -- which they do not have online, cannot mail or FAX me but must obtain at the clinic -- to change my PCP. They have the records of who I have seen. Surely this could be done over the phone? As a final example, the robo-operator offers an option for "established HCHD patients." When I pressed the option, I had to listen to a lengthy recorded set of instructions on what to do if I didn't have a current a Gold Card, and then offered the option to press a number if I had a current Gold Card. So I pressed the number, only to be greeted by the SAME lengthy instructions about what to do if my Gold Card wasn't current. Hmm, I have a current card and pressed the option indicating that I did, so what's the point of having me AGAIN wait through this and press another number verifying I have a current card? To put me to sleep so that when they finally pick up, they'll think nobody is there and they can hang up? (Don't laugh, it happened the last time I played "Call the clinic." Oh and by the way, you cannot change an appointment AT the clinic if the one they gave you is impossible, you have to call in from home. ::eyes rolling::
With the exception of the nurses on my floor, one admissions nurse, one medical student, and one nurse in the ER, I am not impressed with the hospital staff. As far as I can tell, neither of the two hospitals I have any experience with have a rheumatology department, and the staff seemed woefully ill-educated regarding lupus and its complications (despite the fact that their client population is disproportionately African-American, when African-American women have about three times as great a risk of getting lupus as Caucasian women.) I'm pretty sure the diagnosis of heart failure was incorrect (the echocardiogram is confirm that.) As it now stands, it will be close to, if not more than a YEAR between my first symptoms last May and a final diagnosis and treatment. If I survive the wait.
The other thing that happened yesterday was that I got a call from the SSI office regarding my (forced) application for financial assistance. I say forced because when I was hospitalized in May, I awoke on the 19th, after having arrived about 5 pm, being admitted at about 6:45 pm, lain in the "holding area" of the county hospital until about 4 am and then put in a 5 bed ward, to find a cheery young woman telling me that I had to apply for SSDI before they could honor Gold Card Status and pay the bills for me. So we filled out the forms to the best of my groggy, lacking all the back up documents for the application, condition.
The way this works is that they submit the apllication for RSDI (Retirement, survivors, Disability Income). This is what the old Social Security for retirees, dependent (minor) survivors of a deceased person and the disabled used to apply for, all rolled into one. I already knew I would be rejected because when I applied in the mid-1990s for Disability due to my lupus, I was denied on the grounds that as an educated person I should be able to work. Sure, and when you find an employer who likes employees who miss random numbers of days when the pain and fatigue are simply overwhelming, and who sometimes gets up feeling good but within a few hours starts nodding off at their desk without the help of heroin or other illegal drugs (or even legal soporifics for that matter), let me know. I haven't worked since, so now, although I worked from age 15 to 40-something, sometimes 2-3 jobs, I no longer have enough qualifying quarters within the past 10 years (DUH!), so they again declined SSDI. I SHOULD have gotten it before.
After about 10 minutes of questions, the woman told me she was terminating the interview because I was ineligible. Why? I have more than $2000 in my savings, checking, CD's, and IRA and my husband's 401K. Why didn't they ask that question firs,t I wonder? Could have saved us both the time, and the taxpayer money. Second, I don't work, my husband (age 49) started his third year of unemployment just after Labor Day. without much interest, even for part-time work (7 offers in the three years, all within the 2nd & this new third year. I have more than $2000 because I inherited about $10,000 from my mother's insurance policies, and the estate was only recently settled. Oh he was offered a temp job last week -- 1.5 hours one way from our house, and about an hour's worth of the pay at the job per day in gas required to get there (no bus service available which would get him there without several hours of travel each way and a long walk from the stop to the job site).
What is the purpose of making me spend all of that money when I may need it to live on next year. Rebuilding a life would be a lot easier if I got a little help NOW despite that money,, instead of waiting until I have no assets. If I spend it, and my husband doesn't ever get another job making enough to support us and get him to a job, I'll need help until I die paying for medical expenses, care-taking while he's at work, and part of our normal expenses, since $10 an hour (much less than he was making before) will not cover the basic expenses in Houston. My husband's prior salary barely did, when you figure in the cost of clothing, gasoline, maintenance on the car my brother lets us use, medicines, food, etc. etc. In fact, a home health care worker for 4 hours a day would eat up his entire take home. The guy across the street has MS, and he has someone who comes in to help him, and his wife told me his entire income of about $40,000 a year barely covers that, his health insurance and medications. Do the math.
As to the 401(K), if we take it out we pay a substantial penalty, and if they raise retirement age in Congress, it's likely neither of us will be alive to collect it, or Social Security we both paid into. Which means either my older brother will inherit it, which is ok because he's paying all our bills and expenses now, or if he's gone, it will go to charity. We have discussed this, and our charity of choice is one which helps orphans and foster children who are "aging out" of the system get established in college, careers, and life (See http://www.cwla.org/programs/fostercare/agingoutresources.htm for data on the 20,000-25,000 of these kids per year and their problems, and just think about how much help YOU got from your parents during your years from 18 - 25 or so and imagine facing life without that help.) In this economic climate, these kids face daunting challenges as jobs and contributions are thin on the ground. Why can't Congress remove the penalty for long-term unemployed, people losing their homes, people like myself who are denied SSDI because we have been disabled but denied and lack the qualifying quarters.
I know WHY it is. Some people are so afraid SOMEONE might get a penny of THEIR money. It's still insane policy to force people all the way down the road into abject poverty and then expect them to climb out without any assets to work with. It would be insane policy to TAX them into it, like Cain's 9-9-9 would as well.
Tomorrow I have to deal with the county clinic doctor who has been billing FULL PRICE (instead of my Gold Card price I was eligible for as of the date of the visit) until the RSDI/SSI decision came down, and has already turned me over to a collection agency. Not only did I not have the money to pay full price ($320 for an office visit -- my private rheumatologist doesn't charge me that much for a visit AND the inhouse lab work!) -- I was reluctant to do so because I was afraid I'd never get back my overpayment. The Physicians Group refused to even tell me what the Gold Card fee would be or to negotiate for me to pay that amount until this process was settled. Now that it has been, I wonder what they will come up with as an excuse for not billing me the Gold Card price. To top it all off, the last correspondence I have seems to say that this clinic, run by the Harris County Hospital District "does not deal with Ben Taub Hospital" (where I was hospitalized) and will not even call them to discuss my eligibility. All the clinics and the hospitals are run by Harris County Hospital District, so what's that deal? They told me to call LBJ Hospital (where I have only been once in my life, and not as a patient, but to visit my Little Sister in the 70s when she had her baby there) to "get your records straightened out." They also seemed to suggest that since I didn't use LBJ, I should be going to another (more distant) clinic. However, their email was rambling and unclear, so I might have misunderstood them. ;)
So happy days in
This has been a DAY! When I say that, you should understand that it was full and somewhat maddening. It was, however, a gorgeous fall day in Houston! The cooler weather is simply DIVINE...as in a real gift from God to a city that baked, parched, and nervously watched fires for so long. As the sun was setting, I was preparing my front planter box for the beets, carrots and green onions I'm planting in it. Half the box is done..just finishing up the rest. From the pine across the street came the call of what I'm pretty sure was a Great Horned Owl. Peace flooded back into my veins, after having been disrupted earlier in the day by two separate events.
The second of these, which I shall discuss first, involved walking out to hear my neighbor telling my husband that the heavy trash he put out today, thinking it would be picked up tomorrow morning, needed to be removed from the curb "or you might get a ticket." Last month, my husband had put this stuff out, only to discover when the truck came around that last month was the "limbs and yard waste only" heavy trash day. So he hauled the stuff back inside our yard. After decades of living across the side street from this neighbor and his wife, I was immediately suspicious that he had already called the city to complain about this trash. Never have I met a more O-C, anal retentive, appearance means everything, house proud couple in my life. Mind you, they don't like government interfering in their lives, but they're perfect (just ask them), yet they are the first to call the city government when a neighbor offends their sense of neatness of property. What I wanted to say to him was "Oh, so you've called them and filed a complaint already, have you?" I KNOW he has, and that he redeems himself by "looking nice" and "warning" us that we could be ticketed. It makes him "look nice," he thinks.
This I know; they used to regularly call the city and have my widowed mother ticketed when they were first married. Always, they would "warn" us. Now heavy trash for our house can be easily seen ONLY by this couple. The two houses behind mine and his are screened from seeing the "unsightly" pile by a fence on my side of the street and thick plantings on his. So I know it's he who wants to not look at it. Granted, someone might drive by and be so enraged that they actually remember to call when they get home, but what are the odds? After all, the traffic on that street even at rush hour is maybe one car an hour. This month, I fully admit that we got the wrong Thursday...it's the 4th not the 3rd like we thought. What else is true, is that we are allowed to put heavy trash on the Friday BEFORE our scheduled pickup...which would be the day after tomorrow. Did I say "anal?" What the heck is the big deal about TWO days early? DID I say "anal?"
When he went home, I started working on my planter box, and then I got so mad, I went around to the back gate and started struggling with the top mattress on the pile to get all the stuff inside my fence. I got the mattress off the pile and down into the ditch (no culvert or driveway here). When I tried to roll it over to get it up the slope, I folded it and then tried to flip the folded package. The mattress sprang up and hit me in the face, leaving me flailing around trying not to fall backwards into the ditch. Please don't ask me why I tried this same thing twice more before giving up. I think I thought I should be able to make it work! If I were 28 and not dealing with active lupus, I'm sure I could have! However, I realized on the third try I was defining "insanity."
So I called my husband's name and "help" our bedroom being at the back of the house. I figured he could hear me. From down the street , toward my "behind" neighbor's house, a man answered me.
"Who are you calling? What do you need help with?" I could not see him because of the pecan tree foliage.
"I was calling my husband to help me with this stuff." I looked in the direction of the voice, and saw a man who looked like a street person, riding up on a bicycle, a paper bag with a beer can in his hand.
"What's his name? Where is he?" he asks. I told him the name and said that he should be inside this back bedroom, pointing as I answered. I thought perhaps this guy would cycle up there and knock on the window and and tell my husband.
"What are you doing trying to move this stuff, ma'am? Let me do that for you." He got off his bike, and grabbed the mattress and WHOOSH inside the fence it went. Then he spryly stepped back to the pile and grabbed the next item. By the time he got to the third one, my husband came sauntering out. Together they moved the rest of the large heavy furniture inside the fence. I moved the cushions and a lightweight broken chair. It took maybe 5 minutes from the moment the man had called out to me. He kept telling me "Don't worry about those, ma'am, you'll wind yourself."
I asked my husband if we still had any of the beers he'd bought for the carpenter my brother had hired to do some work around the house before my mother died last November. He went inside to get them, and I chatted with this fellow. He used to live two streets over, but then lost his job. His mother had died and he had no family, working as a maintenance man in a nearby apartment complex, and odd job man for some other people in the neighborhood. I asked if he was living rough, and he said he was living at a local motel which he named, and which I know to be cheap and about 4 miles away. I learned he was 10 years younger than I am, where he went to junior high and high school. He's of German heritage and grew up here in Houston. I told him his eyes reminded me of my mother's father, whom I had adored and who died just after we moved to this house in 1957.
My husband came out with two beers for him, and he protested that wasn't necessary. I told him "We can't drink them, and the guy we bought them for quit drinking, and this is the only thing I've got to thank you with." Now I know many would think it was wrong of me to give beer to someone who possibly is an alcoholic. I would think so myself most of the time. What I have learned however, are two things. One, each person has the right to their own vices, and you cannot make them choose not to indulge in them. Second, given the circumstances of his life, those two Guinness dark beers might be one of the few pleasures he has in life. Maybe I learned something else too. Some people who don't look so savory and whose lifestyle might be objectionable to others have wonderful hearts and generous souls. I think I knew that already, but it certainly struck me that my neighbor merely "looked" kind and wasn't, and this stranger opened his heart to help someone without asking any thing in return.
"No need for that," he said
"You were a blessing when I needed one," I said "This is my way of thanking you."
"And this is your thank you!" he said, and smiled, lighting up those those pale ice blue eyes with the glow of heaven. I wonder, might Jesus not return as someone like this? A down and out person living day to day, or a welfare mother who made "bad choices?" Or would Jesus come back as someone who looked and lived like my neighbor -- always neat and tidy but trying to control the behaviors of others? When the Bible talks about "denying Jesus" could it be talking bout passing by someone like my angel of today as "unsavory?"
Having taken so much time and space writing this, I will save the other story for another post. Anyway, I'm hongree! Thanks for reading this. I'll be interested to see if anyone leaves any comments or fills out the form on my homepage.