NOTE: If you have relatives who are disabled or over the age of 65 who rely upon Social Security, Medicare/Medicaid as their sole means of receiving medical care, “ this is an article you probably want to read. If they or their immediate family do not understand how to navigate the system, or if they live in an area where the DEA is constantly harassing Doctors for prescribing pain medication(s), their health and welfare could easily be in serious jeopardy in the event of a life-threatening illness.
I know, my own Mother is literally fighting for her life, and while I admit I am too close to the story to remain unbiased, I was advised earlier today that what you read below is playing itself out across our country to thousands, if not hundreds of thousands of indigent Americans - and the next one who faces this nightmare could be one of your own family members. I am posting this article for its social value, as I believe that too many people have no idea what our seniors and disabled are having to cope with just to stay alive - and also for any input from individuals that may have an idea of how I can negotiate this system and somehow, try and make sure my Mother receives adequate medical care. Admittedly, if you're financially secure, as well as the rest of your family, the below article probably won't apply directly to you.
My Mom's Medicaid Nightmare: Updated - A turn for the Worse.
We all face personal tragedy and pain, which is why I was hesitant to post anything on my site or this forum; I have hopes that this might awaken some that are nearing retirement age, or even those who may have to rely on Social Security and Medicare in the event of a debilitating injury. Even though these events effect me personally, I will attempt to be as objective as possible, and rather than me deciding that something is or is not wrong or correct, I will wait for the consensus of opinion and hopefully pick-up some advice that will help me navigate in these unfamiliar waters. (There will be times when some of my comments are biting, but in extreme instances, I simply can't help it.) I also hope that anyone who finds themselves in a similar position may find some insight that could possibly help them in the future, or maybe even now if anyone is experiencing problems that mirror some that now face my family.
I was recovering myself from an illness/injury and shared a house with my Mother in Pensacola, Fl. We both had a good physician at the community clinic, but he suggested that one of his patients write the local newspaper in regard issues that were happening at the clinic which he believed adversely affected his patients. The patient took his advice, the article was published, and within weeks, a great physician was no longer employed at said clinic. We both had to see the new Doctor, and almost immediately, we found that all of our previous care was being ignored.
My mother is a chronic Fibromyalgia patient, her spine is compressing and deteriorating from severe osteoporosis, is a breast-cancer survivor from the mid 60's, and she has one of the most severe types of the disease. She has been on high-level pain medications for almost 20 years, and even with her pain meds, is still prone to severe bouts of pain and discomfort. We had decided to leave Florida, and I was out-of-state procuring a new residence when my Mom first became ill.
My sister found her retching and curled-up on the bathroom floor, violently sick. We took her to the Emergency Room, and she was admitted for testing. They attempted to perform a colonoscopy examination, but stated her intestines appeared to be twisted and advised her that a further examination would be necessary sometime in the future. In the meantime, the Doctor at the Community Clinic erred and assumed that her bowels were obstructed due to constipation, probably caused by her use of pain medications. (See note # 1)
So, in an effort to correct the issue of constipation, he cut down on her pain medications. This did not solve the problem, and from that moment, my Mother was in a state of semi-withdrawals, pacing the floor in agony each and every night. My sister watched her suffer, helpless to do anything until her next Doctor's appointment, all the while knowing why she was in so much misery. Watch your own mother crying in misery, literally writhing in pain, and see how it affects you!
Finally, the date of her next doctor's appointment arrived, but the last Doctor who treated her was no longer there. She was treated by a new doctor, someone who had recently retired from his private practice. My sister went with her, and my Mom attempted to explain the sheer agony she was in, and to their utter horror, the Doctor explained that he was once an "addiction specialist" and had worked at a local Baptist-owned mental health facility. He stated that he had seen enough people destroy their lives through abusing drugs, and he didn't personally condone or believe in their use; that said, he lowered my Mom's pain medication again. ( I personally checked-up on this Doctor, called the center he claimed he worked for, and was informed that he hadn't worked there in over 20 years, and when he did work there, it was part-time, as he filled-in for a Doctor that handed out methadone to patients who had been addicted to narcotics. They claimed they had no knowledge of his assertion that he was an "addiction specialist.")
Note: To understand why indigent patients who live on the Florida Panhandle have great difficulty in procuring appropriate pain medications, read: Should The DEA dictate how Doctors Should Treat Patients?
The suffering she went through the next few days was heart-wrenching; my sister called me at night crying, telling me how much weight she was losing, and how she appeared to age 15 years in a matter of just weeks! To make matters worse, her depression, brought-on by the severity of the pain, became evident as she questioned why they would keep her alive and allow her to suffer so much. She stated she would rather die than endure the pain. And then she began vomiting again, started running a low-grade fever - and was so weak she couldn't even hold a gallon of milk. Sis took her to Baptist Hospital, and she was immediately admitted for emergency surgery; she had a bowel/stomach obstruction caused by colon cancer.
It was an extremely serious operation, and because of the cancer, the surgeon had to resort to a colostomy procedure. He stated he removed some lymph nodes, but other than that, he felt he had removed all of the cancer and her prospects for recovery were excellent. She was on high-dose narcotics after the surgery, and was kept on them in excess of one week. After they decided it was time to reduce her dosage, they went from an extremely high dosage to a minimal post-operative dose of three (3) Lortab 7.5 Mg tabs as needed three times per day for pain.
Here we went again, the Doctor prescribing pain medications that only took into effect the narrow agenda of the surgery, and her expected recovery time without any consideration of her past medical condition(s). Once again, she was experiencing major withdrawal symptoms and the nurses and apparently the Doctor attributed it to psychiatric reasons. One night she was in such severe pain, she tore out her IV's and bandaging - demanding to go home where she could suffer in peace.
Finally, she was well enough to go home, and I returned to Georgia. It's obvious I returned too soon, because soon after I left, my Mom began experiencing severe problems at home. The Home nurse that came once a day reported that she was a difficult patient, always complaining about severe pain and generally being uncooperative; Even after all of this time, no one had addressed her chronic pain issue. She was a post-operative cancer patient, yet no one saw fit to address the issue of extremely severe pain for a seventy-six year old woman.
Lo and behold, my Mom again began feeling extremely sick, started running a low-grade fever – and then her surgical wound burst open, spewing cups of pus that had accumulated from the staff infection she had caught during surgery at Baptist Hospital. Sis called an ambulance, and Mom was in the Hospital again, this time battling a staff infection - with still no change in her pain medication. She became so depressed that she asked us to get her out of there so she could go home and die with dignity, instead of suffering with no relief in front of total strangers.
Her Doctor stated she had to be watched 24 hours per day, so she was discharged to a convalescent home to learn to care for her colostomy and to recuperate from the surgery and subsequent infection. But, the same problem reared its ugly head at the convalescent facility; no one had addressed her chronic pain issues, so at night, she paced the floors as best she could in her weakened condition and received almost no sleep or rest. The staff at the home agreed that she should have her medication adjusted; however, it was out of their hands, and solely in the hands of their physician. For reasons unknown to me, he never did address the problem; instead, they chose to let her suffer.
While Mom was there, she stated that they had hurt her back, and there was a large spot on her back where a mole had once resided. The convalescent home stated she arrived from Baptist Hospital with the bandage already in place, so we attributed my Mom's remarks to pain and delirium. (The delirium diagnosis is my own.) The home was also complaining that my Mother would only allow my sister to change her bandaging, and that again, she was being a difficult patient.
I was back in Florida within two days, and much to my dismay, I found that my Mom still had no pain relief, and for some reason, she appeared to be afraid of the staff at the nursing home. On the day I arrived, I convinced my Mom to allow the staff at the nursing home to change her bandaging; she complied, and they attempted to secure the wound and medicated packing that was stuffed into her abdominal cavity via "Montgomery Straps" so there would be less irritation to her skin caused by the constant removal and application of surgical tape.
It worked until night came, which is the time my Mother is usually in the greatest amount of pain. She paced the floor as usual, the Montgomery Straps didn't hold, and her packing and bandaging literally fell out all over the floor. She requested assistance, but was told to go back to bed. My sister found her in the morning, her wound taped together by none other than my own Mother, and with Masking Tape to boot!
That afternoon (Tuesday), they discharged my Mom, stating that they couldn't care for her without her having the proper pain medication, and further stated that they were not equipped to handle that type of wound care. They also stated the infection was back with a vengeance, and called the Surgeon with said information. An appointment was made for today (Thursday), and what my sister learned is not what we were told at the nursing home.
First, the infection is gone??? The Doctor stated that my sister had done an excellent job in caring for and keeping the wound clean, although questioned her as to what had caused her to be in such rotten condition. My sister told him about the nursing home, how she was treated, and then, as an afterthought, asked him why he had removed the mole from her back. The Doctor was visibly surprised, stated that he hadn't touched her back and examined the wound/lesion. He stated that it appeared to be a certain type of bed-sore, and claimed no prior knowledge that it had existed. He also stated that it was imperative for her to see a family doctor to look into why she appeared to be so ill. (This physician only follows her as far as the surgery is concerned.) He also stated that she needed to see a chronic pain specialist as well as a psychologist right away!
This appointment was today, and with luck, I'll be back in Florida by Monday, the day my sister is attempting to set all of the appropriate Doctor appointments. I would be there already, but now that I too live on Social Security, I have to wait until I have the traveling money, as well as picking-up prescriptions tomorrow for my own pain medication. I attempted to see if a physician would accommodate me in Florida so I could leave sooner, but failed to find anyone that would help.
In short, I'm frustrated, exhausted, and broke from the traveling. This time I will be staying for an extended term to help in the care of my Mom, but in all honesty, I am completely unaware of how I can negotiate the system of Medicare/Medicaid and attempt to get the best - or even adequate medical care under these programs. I've always considered myself to be an extremely resourceful individual, but in the case at hand, I feel helpless and inadequate, and when I arrive in Pensacola, have no idea of what the most effective action I can take that will aid in my Mother's recovery.
I would appreciate any and all serious suggestions, and please, do not misconstrue the intent of this post. I admit that we're essentially broke, but this posting is not to request charity, which I wouldn't accept anyway, but to help in finding a viable plan of action that will best serve my Mother's interests - not my own. I, as well as every member on this forum, simply do whatever is best and whatever must be done for our individual family(s) when a crisis arises; the issue I face is that I am unaware of what, if anything, is the best course of action.
I appreciate your time, and would be indebted for any possible solutions to this personal family crisis. I am struck with the knowledge that the situation I face is one that countless millions of Americans could face, and many are already facing as I write these words. There is probably nothing unique about this situation, and I'd guess it's a common occurrence in these "new" United States - but I'm not sure if it's common knowledge that our parents may one day be subjected to what I consider no less than torture, all because of complacency in the care of our elders.
Note # 1: Chronic pain patients learn to regulate their systems when taking long-term narcotics for relief of chronic pain. It comes with practice, but when your dosage stays the same, as my Mother's did, keeping your system fairly well-regulated is no big deal. If the clinic would have looked a little deeper rather than jumping to conclusions, it's possible not nearly as much suffering and pain would have been endured - and without having to bear the physical discomfort from withdrawals, she would have been much stronger and better prepared for the ordeal soon to manifest itself.
Update: The below information I found out only this morning, as my sister forgot to mention it to me. I posted this subject on Liberalsonly.com to see if there were any viable suggestions, and below is the update I posted a few minutes ago:
I appreciate the suggestions and ideas, however, just when I thought the situation couldn't get worse, it has. My sister failed to tell me that on Thursday, when my Mother had an appointment with the Surgeon, he clearly stated the urgency of Mom seeing a chronic pain specialist and a regular MD at the clinic where she used to be a regular patient. As I stated in an earlier post, the Doctor's nurse advised my sister to immediately take Mom home after the appointment - as she was simply too ill to be transported anywhere.
My sister called the clinic, stated the dire urgency of her being seen right away - and the nurse promised to call back with an appointment ASAP. She never called back...
I just found out this morning that the Doctor she did see on Thursday DID NOT prescribe any further pain medication - even though he stated it was imperative that she have her chronic pain issues addressed ASAP! He will not prescribe it, because it is "only his job to follow her as it pertains to the surgery!" So - he knows she wasn't going to get an appointment right away, and now she is back in withdrawals and suffering even more than she was before.
I am so frigging mad that I can't see straight! It appears to me that they are intent on making her miserable - and I hope it's not because I have raised my voice and begun to question exactly what is happening down there... How do you justify cutting-off all pain medication to a cancer patient with medically known serious long-term chronic pain issues??? I'm relatively sure that she isn't being mistreated because of my political philosophy and affiliations - even though all involved know who I am and are aware of my political activity through the local newspaper and my brief appearance on WEAR TV.
I am stumped, furious, and just about at the end of my rope! I am positive that the constant mistreatment she has endured has exacerbated her mental condition - and in all honesty, now that she has been reduced to laying in bed, up and down all night, crying, and constantly in pain, I'm not real sure that she will pull-out of this mess; and if she does, physically, will she ever be able to regain her prior wit and mental clarity? She is definitely suffering from dementia - and that seems to have been caused by the constant pain and misery.
Hopefully, I'll be in Pensacola by 11:00 or 12:00 tomorrow morning - and then we shall see what can be done. And yes - I can now see where an attorney could possibly play a role in making sure that she receives proper medical care, and while I certainly cannot afford one, I may be talking to Pensacola legal aid - and any suggestions will be appreciated on how I can quickly get her some help.
Thanks,
JAC
I will be breaking down my computer system in an hour or two for transport to Pensacola. Anyone serious that wishes to contact me may do so by calling my cell phone, which can be found by doing a "whois" on Justanothercoverup. Otherwise, I should have Internet access by late tomorrow afternoon. Thanks.
NOTE: This subject is also posted on The Smirking Chimp, and there are many comments that provide an interesting insight and speak of problems like this throughout the United States. Evidently, this IS NOT an isolated incident when it comes to dealing with Medicare and Medicaid. LINK
UPDATE:
Yesterday was a day I won't forget - and even though I do believe the health care system is better in Georgia than it is in Florida, there are still roadblocks and regulations put in place by the government that actually impede obtaining critical health care, some that are privacy related, and others caused by a Federal Drug Enforcement Administration that has intimidated and harassed so many Doctors that few are left who will even treat their own patients for chronic pain. Yes, they are still taught pain management in medical school and during their residencies - but the DEA, lacking a medical degree of any kind, has decided they cannot practice what they've learned in many jurisdictions - and those that don't comply are hounded and intimidated into compliance. The DEA should chase criminals, not tell physicians that have attended medical school how to treat their patients, and create another "specialty" business so they can monitor them easier than so many different doctors... Who cares what it costs the taxpayers, or the extra burden on seniors that often have to choose between heath care and food! Another example of a government intruding into every aspect of it's citizens lives...
Yesterday, I took my Mom to an appointment with a chronic pain specialist. When we arrived, the receptionist asked me if I had her medical records. I replied in the negative, that I had given them to the physician that had referred her to their clinic. We were both puzzled, so I called her local Doctor. I asked why they said I had the medical records when they knew I had already handed them over to them.
I was told that because the records were from another state, it was against the law for them to forward them to another doctor. I was shocked, and stated they had referred her to the Doctor themselves - and how did they expect the pain specialist to treat her with no medical records? I was told that they would have to get the records themselves, or I would have to give them the records - which I no longer have, but they could allow me to have a copy.
I asked them why they didn't tell me all of this before the appointment. The reply was that I didn't ask. They were right, I didn't ask... I have been referred by my primary physician many times to other specialists, and if there were medical records or X-Rays that had to go along with me, I was advised beforehand. Anyway, that's the way things used to be...
The chronic pain specialist asked if the pain meds she was on now were working. I told him yes, in the dosages she was getting, it controlled the pain, but by no means was enough to make her comfortable. He wrote his prescriptions and asked to see her again in two weeks, as he had ordered X-Rays of her back and he was concerned the cancer has metastasized in her back. Mom liked him and we left.
Imagine my surprise when I looked at the prescriptions. Prior to seeing the "specialist", she was getting Lortab 10 Mg. every four hours and Ultram every four to six hours. He cut her Lortab's to four times per day, and also cut the Ultram to 200 Mg. per day. Same medication, but lower doses. He also prescribed "Lunesta," the new sleeping aid. She is already taking two relatively new medications just prescribed a week and a half ago, Aricept and Namenda. I gave her the Lunesta at 10:00 PM the night before last on 6-7-07. After a while we noticed Mom wasn't getting drowsy, and in fact stayed wide-awake until the wee hours of the morning. She said the Lunesta made her feel weird.
When she did wake-up yesterday morning (it's 4:15 AM 6-9-07 as I am writing this.) I noticed she was extremely confused and was having difficulty speaking properly. Luckily, the Home Health Care Nurse came by in the AM to watch me change Mom's bandaging. Mom could barely follow instructions and appeared to be getting worse. The nurse asked if she had taken anything new, and I mentioned the Lunesta. She said not to give her anymore of it - and if she appeared to be getting worse, to call for assistance.
She slept most of the day, since she got very little sleep the night before - and then when she awakened, she couldn't even talk. Nothing but gibberish was coming out of her mouth, and you could see the panic in her eyes. She was trying to call my name, but couldn't quite get it out - and was worse-off than I have ever seen her. I immediately called the hospital and explained what had happened, what the Home Health Care Nurse had said, the whole works. I called and asked if I needed to call an ambulance. The hospital gave me the impression that it would probably be OK.
Because of all of the crap my Mom has been going through, I started keeping extremely detailed records. When the paramedics were here at 1:00 or 2:00 this morning, they asked when and what time I had given her medication. I said easy, I'll print it out for you. These are the notes I gave him, which unfortunately, he gave to the hospital:
10:30AM Nurses came by and changed her bandaging. If her mental condition doesn’t change by this evening, was advised NOT to give the Lunesta and to call the Doctor.
11:20 AM just talked to the Doctor’s office; Discontinue Lunesta immediately and C/B Monday when the Dr. will be in to switch to another medication.
12:00 PM Mom ate some toast. Have to go to the Dr. myself and she seems to be in an enormous amount of pain. Am holding off giving her any more pain medication until I am ready to go out the door.
12:30 PM 1 (50 Mg.) Ultram
1:30 PM 1 Lortab – I’m on the way to the Doctor.
4:30 PM Greg called me from home. Mom sounded hysterical. Told Greg to give her 1 Lortab, and he also gave her 1 ½ Bayer Aspirin.
6:20 PM Finally home. Mom is crying. Gave her 2 (50 Mg.) Ultram. She is very disoriented and is babbling – making almost no sense. She appeared to be in agony.
6:45 PM Mom is sleeping well now and appears to be out of pain – or at least it’s at a manageable level. Running to Eckerd’s to pick-up my prescriptions.
9:30 PM 1 Lortab, 1 Naprosyn, 1 (5 Mg.) Namenda, .5 Mg. Klonopin
10:30 PM Called Northside Hospital in Cumming. They said she “might” need to be evaluated and to keep an eye on her. They seemed a little indifferent, and it sounded to me like they thought it was “no big deal.” She fell asleep again, and I will be sleeping in the same room with her tonight in case she wakes-up and still isn’t able to comprehend where she is, what she’s doing, etc. There’s no question the Lunesta has caused a major setback in her condition – and I checked for adverse reactions, etc., on the Internet but the medicine is so new that no known drug interactions have been reported “YET!” Why in the hell would he prescribe something so new that we don’t know much about it, especially in consideration of all of the other medication she is taking – some of it also “new to the market?”
My son and I were a few minutes behind the ambulance, and when she arrived, for the first time I was not allowed to go back with her. They said they were having to restrain her, that her blood pressure was going through the roof - and they didn't want anyone back there to impede their treatment. My son told them that I was the only one that could soothe her, that I would stay out of their way - but she was frightened and needed a family member with her for reassurance. I told the nurse myself that she hadn't had pain medication for quite a while, which always causes her blood pressure to rise - and that if they gave her something for pain, based on past experience, they would see a dramatic drop in her blood pressure.
The charge nurse mentioned what I had written above, and then placed the blame squarely on me. She said I knew my own Mom, and I should have known to bring her in. When I called the hospital, it wasn't to ask for advice on what do for her, but rather if I should call an ambulance! I got a "if she gets worse, maybe she will need to be evaluated - but gave the impression it was really no big deal. Anyway, they refused to let me see her and told me they would let me know when they had the situation under control, because they weren't sure "if she was trying to Stroke-out." I said, rather sarcastically, if they didn't bring down her blood pressure - I had no doubt she would have a stroke. She was back there with total strangers that were tying her down to the bed, and for a seventy-six year old woman, that has to be a traumatic event in of itself; Even more reason to hear a familiar voice...
Anyway, Mom is still in the ER and I'm waiting for a phone call. This past week, since she began taking the Aricept and Namenda I have been blessed with talking with the Mom I have always known - bright, ornery, and actually making plans for when we go to Florida next month to pick up all of her belongings. Add Lunesta - and now she can't even talk, seems to have had some sort of psychotic break or something - and I can't be with her or even see her right now.
I'm disabled myself and have had this Blog, counting the previous free service, for almost three years - and there has never been a "Please Donate" button on my site. I could have used the help, but was proud and didn't want to make it look like I was "Blogging for money." Now I find myself in the position with barely enough money for gas; the expenses of my Mom being ill have broke me, but more important than that, even food is hard to come by after all of the expenses we've had to shoulder.
I don't know how to put one of those donate buttons on my site anyway - but if you can help, any money will be used to help my Mom - not me. I wouldn't ask for myself, I'm too stubbornly proud - but if it helps to get my Mom the medical attention she deserves, then I have to ask. I have a PayPal account in the name of "justanothercoverup." If you can help in any way it would be greatly appreciated - and anything I receive I will be happy to provide receipts to show exactly what it was used for. If you need further information, or verification this is true, please contact me at bill_sarah2000@yahoo.com.
Was it the Lunesta that caused this last crisis? I don't know, although it is a mighty big coincidence - especially considering the progress she was making. I doubt it was the Lunesta alone, but more than likely an interaction with the other "new" medications she was taking.
I'm embarrassed to even ask for help - but at this point I see no other choice. Also, if you have any information that is relevant to the above mentioned medications she was taking, I would appreciate the input. All three are so new there is very little information out there, and I'm hoping that maybe someone else has heard of a reaction like this and maybe a possible solution or effective treatment.
I will update this when I hear something conclusive from the hospital - which I hope will be soon.
Thanks
William J. Cormier
NOTE: About my Mom... She worked almost her whole life; college educated, and wound-up at retirement age being a certified master hypnotherapist. She had her own clinic in Gulfport, Mississippi, and specialized in helping people with chronic pain. She worked for free on AIDS patients and people with cancer if they couldn't afford to pay - and then trained the staff at a new pain clinic In Biloxi, Ms., in hypnosis for chronic pain patients. As soon as they learned what they needed, they promptly wound up with her clients (they could take insurance - and Mom couldn't because she wasn't a "real doctor.") But, that's business and water under the bridge. I mention it because I find it incredibly ironic that someone who worked so hard to ease the pain of others now has no one to help her but me and my sons - and there is little to nothing we can do except try to get her the best medical care we can find – which so far has turned out to be a lesson in futility.
I’m getting ready to post this, it’s 5:30 AM, and we still haven’t heard a damn word from the hospital. ?
Summation: If you follow the link to my Blog, all of the associated updates are there in the "comment section." To make a long story short, she just finished five (5) days in ICU - and how she lived through that ordeal I'll never know... There are many issues that appear in the comments that don't appear in the chronicle above - and I didn't feel it appropriate to include them here because of their length.
The bottom line is that this nightmare has been going on for almost two months, and now that it's almost resolved and Mom will be coming home in just a couple of days - I don't even have the food or gas to pull us through for the rest of the month. I made some bad decisions in the early stages of this family crisis, such as pawning the title to my car and laptop - but with no time to find alternative means to get to Florida several times, and the expenses here - I may have placed myself in a position where the state could actually remove her from my care, especially if I don't come-up with a way to raise some much needed money - and fast.
I have been Blogging for three years, and there has never been a "donate" button on my site. I've always paid everything myself, plus donated to the Red Cross, Operation Helmut, and have always been supportive of the local State Trooper's fund for widowed officers. I guess we all have our favorite charities - and those were mine.
Now, since I'm disabled and on Social Security myself - I wouldn't ask if it weren't for my belief that no one will care for Mom the way I do - and this time, I have to swallow my pride and ask for some very limited support.
I know that some people are always attempting to run games and will do anything to con people out of money rather than working themselves - but this is real, and we are desperate for help. Anyone wishing to verify this situation can message me - and I will be happy to provide the name of the hospital and even the room number she's in.
I'm embarrassed to ask - but right now, with only five days until my vehicle is in danger of being snatched, I see no other alternative. Without transportation, there's no way I can care for her - and I have already found-out the hard way that "rest homes" are the last possible resort, especially if it's on Medicare's dime - where care is directly associated with the patient's ability to afford one of the better facilities. Really, there is no place like home - especially when you're sick and disabled.
PS: If you visit my site, some of the formatting is off... I applied a Wordpress Update which didn't carry-over the apostrophes or commas in some instances - which is what happens when you can no longer afford a Webmaster.
__________________________
"The whisper becomes louder, then a voice is heard, and then crowds of voices, and eventually the whisper becomes the roar of change!" wjc

Problems w/Medicare and/or Medicaid
Have you contacted your Congressman?
Sometimes they can help you -- if they're the right kind of representative.
JEB
Chronic pain patients have
Chronic pain patients have NO RIGHTS that must be respected by anyone. The situation for chronic pain sufferers is way beyond Kafka, Bosch anything anyone can imagine. It is also the consequence of our flight from reason. The media hysteria about Oxycontin, mixed with demagoue politicians have made prescribing effective opiates a heroic deed. The best practices on Pain management, the newest theories are in direct conflict with the DEA. The DEA MUST be removed form the Medical business. Credit cards get abused but no one believes they are evil. No0ticwe how the Doctors seem to treat Opiods as the evil molecule? Insulin dependent diabetics need their "drugs" every day. Does that make them evil? The hypocrisy, moralistic brutality and callousness I have witnessed as the partner of a Pain patient would stun anyone who has not experienced it. Any Doctor willing to prescibe adequate narcotic pain meds is a hero and is risking his life. A Doctor in Virginia, Dr Hurwitz, was recently re-tried, and though he had the original conviction for 45 YEARS!!! thrown out a jury still reconvicted him and he faces 20 years. All for having patients lie to him. Pain is self reported. Either a few fakers get through or you deny people who need relief. Suicide is epeidemic among Chronic Pain patients. Surprised?
I went through this in 1989,
I went through this in 1989, you MUST approach all doctors knowing they shall ALWAYS minimize and try to play down everything. Your answer that the meds were working but not enough was wrong, should have described her pacing at night and vomiting from pain. Get free samples of meds, see nurse's assistant instead of actual doctor-it costs less, generic meds cost less, ask for a MONTHLY supply of meds, each 1, point out how many times in a day you/she takes each pill-you'll probably have to fight them for this. Food closets, churches, senior centers may have info-doctors that are better, places to eat. If you have a disabled car plaque people will be more inclined to believe you are disabled, if it's an "invisible disability", not so much.
I understand
I, too, have fibromyalgia,and definitely think of myself as a victim of our governments"why don't you people hurry up and die" thinking.I'm unable to work,but my husband, who has uncontrolled diabetes, does work.H'es a cook, on his feet all day,and then comes home to have to take care of the house.Our kids help out, but they have school to think about.We were on medicaid until last Autumn,when it was taken away,because they said my husband made too much money.He was making less than a thousand a month,to support a family of 5.The worker sent me a booklet of guidelines they use.If I were a single mother,I could make almost $40,000 a year, and still qualify for medicaid.But, because I have a husband,he isn't allowed to earn more than $800 per month.
Anyway,thanks to social services "new" guidelines, we now have NO medical care whatsoever.Neither of us have the medication we need,nor any other treatment that could help.I hurt 24/7/365,along with too many other symptoms of FMS to count.Hubby is now seeing complications from diabetes that scare us to death.We know FMS is unbearable,but it won't kill me-his diabetes CAN kill him.And yet, we can't get help.Even when I had doctors, though, I couldnt get any pain relief.I would tell them my meds didn't work, and they would prescribe the same ones over and over to me.One doctor even laughed in my face, and told me" You aren't getting anything stronger than what you already have from me."Of course, now I have nothing.I recently was approved, after fighting since 2003,for SSI, but was told that because my husband makes more money now, I will probably only get the backpay, and not recieve an ongoing check,nor medicaid.We're still at about half the poverty level for a family the size of ours.
My best advice to you is to call your representatives, your governor,your senators,and the media.Contact national talk shows.Contact the Today Show.Get the word out what's happening to your mother to anyone and everyone who even MIGHT be of help.Get a copy of the Patients Bill Of Rights-there is wording in there that states that patients have the right to pain relief.In this screwed-up system of ours, WE-the PEOPLE, have to be our own advocates.WE have to take control of it ourselves.Because THEY don't care.
Sheryl
I contacted the manufacturer of Lunesta yesterday
I called Sepracor Corporation yesterday afternoon, not to accuse them of wrong-doing, because at this point no one knows the exact cause of my Mom's close encounter with death. (Sepracor is the maker of Lunesta.) The reason I called was because "Lunesta and Aricept" were Googled together by the University of California at San Francisco - and I was calling to see if there were any "known" drug interactions with either Aricept or Namenda. If anyone has any information of other possible drug interactions of this type, I would be extremely grateful.
Am I accepting the opinion of a Doctor that states it "couldn't have been the Lunesta?" At this point, until I know more, the answer is no! I was told, and have yet to verify this information, that Doctor's receive kickbacks from pharmaceutical companies for prescribing their newest drugs; based on this information, if it is indeed true, then the Doctor's opinion in regard Lunesta is essentially invalid as far as I'm concerned - especially when they (although I do stipulate that he was not the one that prescribed the drug) receive compensation for prescribing these drugs. If there really is financial compensation involved, then I would consider it to be a conflict of interests - and will vigorously attempt to learn if drug companies really do pay Doctor's for prescribing new medications. If this IS true - then I believe it is a practice that is contrary to the patients well-being, and will work to make this issue as public as possible.
I repeat - I am not personally aware that this practice exists, but if anyone has information in regard this issue - your input would be greatly appreciated.
JAC
__________________________"The whisper becomes louder, then a voice is heard, and then crowds of voices, and eventually the whisper becomes the roar of change!" wjc
http://justanothercoverup.com
Yes - Doctors do receive kickbacks from Drug Companies!
Well, it looks as if I was able to answer the question myself, with very minimal research. Yes, Doctors do receive kickbacks for prescribing new and experimental drugs, as indicated briefly below:
And then, there is this article - one of many I found on Ask.com:
Excerpt:
Like public companies, physicians and pharmaceutical firms have traditionally self-regulated their interactions--mainly with vague and unenforced ethical guidelines. Most times, little perceived harm came from pharmaceutical makers giving gifts to doctors, or paying for their travel or meals. But such inducements contribute to the rapidly increasing cost of medical care. The drug industry spends between $8,000 and $15,000 per physician each year to market its products. (Emphasis added) The National Institutes of Health Care Management Research and Educational Foundation (a Washington-based nonprofit) found that retail spending on prescriptions more than doubled between 1995 and 2000, growing from $64.7 billion to $132 billion. Around 25 percent of this increase--nearly $17 billion over five years--was attributed to a shift to the prescribing of expensive drugs that often offer only incremental improvement over existing drugs, many of which are about to lose patent protection and face cheaper generic competition. Doctors studying their colleagues have concluded that physician-drug company interactions, small and large, legal and illegal, are contributing to the increases. MORE
So, now we know for sure that physicians receive kickbacks for prescribing certain medications being pushed by the pharmaceutical companies - and personally, I feel like this is a major conflict of interests to the patient they are treating. It smacks of the same corruption we see when lobbyists in Washington are caught illegally influencing our Congress. It truly seems that corporate America is ruling this country - not the people who are responsible for their profits and ultimately, who suffer when profit is placed above the welfare of the people.
JAC
__________________________"The whisper becomes louder, then a voice is heard, and then crowds of voices, and eventually the whisper becomes the roar of change!" wjc
http://justanothercoverup.com
A Sincere Thanks to Northside Hospital in Cuming, Georgia!
Hopefully, this will be my last comment on this thread. I just received word from my Mother's Doctor and she will be released from the hospital this evening. She is being discharged with adequate "long-acting" pain relief for her chronic pain issues, plus other needed medications - and although there is still no definitive virus or bacteria that has been identified as the cause of this crisis, it was only through the heroic efforts of the physicians at Northside Hospital in Cumming, Ga., that saved her life!
I admit there was a "speed bump" with the emergency room, which I'm sure wouldn't happen again, but in regard the care and expertise I saw demonstrated in the Intensive Care Unit - and expertise of the physicians who were called upon to consult and aid in her treatment were absolutely magnificent, and even when I had begun to lose hope, they kept working non-stop in an effort to get to the root of the problem - thus saving her life.
Just because they couldn't identify exactly "what" was wrong, or which Virus/bacteria/or whatever was wrong doesn't take-away from their remarkable ability(s) - but shows that even when faced with an unknown, they kept working and eventually persevered.
If I were to become critically ill and had my choice of hospitals, I'd request to be taken to Northside Hospital - as I would any member of my family that needed critical, life-saving care. I don't have enough words to thank them for their remarkable performance in the face of an illness that lesser individuals might not have been able to overcome. My sincerest of thanks and gratitude - and the same from the rest of our family!
No, the financial difficulties are only beginning, but Mom is coming back home, and somehow - I know in my heart that things will work out. The support, prayers, and well wishes have helped a lot - and quite honestly, helped give me the strength to face a situation that could have been much worse than it was.
My eyes have been opened; Now I know personally the plight so many millions of our seniors face, and sometimes, what little support or help they receive... I may not be able to accomplish a lot, but will always be an advocate for those who cannot speak for or help themselves - as we all should be. One day, like it or not, we could all be in a similar position - so working to change a broken health care system should be foremost in our minds, once we take back our country from the Neo-cons.
__________________________"The whisper becomes louder, then a voice is heard, and then crowds of voices, and eventually the whisper becomes the roar of change!" wjc
http://justanothercoverup.com