Please read - Just got back from visting Rae in the hospital

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Rae1889 said:
they say that amm faking my seizres. to vboot...i just got my car reposeessessed our wedding i scall off unit im better and we habve mo ney. i am so man that i am seriously having bad bad bad bad thoughts.
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RAE said that they said she was faking her seizures. I wasn't reffering to the term "pseudo-seizures", I was referring to what Rae wrote.
 
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Sorry CB

It's getting late here. That really bugs me too that they would say that (I"m trying not to use nasty words).
 
Hey, no worries. I know, I think it's even later here (eastern standard time)! I better get my butt to bed!
 
Aw, man

Rae, what a crock of ****. WT* are those supposed docs and nurses thinking at this hospital? Good grief. I wish I were up there to help you........
 
This is really too unreal to be true! Did they THINK of giving you Pheno when you were in the ER? (Remember, those ER docs aren't the brightest crayons in the box when it comes to epilepsy.) Was your attending physician a neuro? What kinds of diagnostic tests did they give you? What meds are you on? What hospital are you in now?

This really sucks. My heart goes out to you... But you're strong and you're brave and you'll make it through.

For more info on other diagnostic tests, go to http://www.coping-with-epilepsy.com/forums/f22/beyond-eegs-diagnostic-tools-epilepsy-9149/


P.S. Forget about "doing yourself in." I've been there and it's NOT a pretty picture.

BIG HUGS!
 
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Rae1889 said:
our wedding i scall off unit im better
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The wedding may be delayed, but Chad is still there the same as before. The wedding is a great ceremony and will be special when you are better. However, it has no impact on your long term devotion to each other. Your relationship has survived much more than many face in 50 years.:woot:

Keep your spirits up kiddo.:rock:
 
BuckeyeFan said:
The wedding may be delayed, but Chad is still there the same as before. The wedding is a great ceremony and will be special when you are better. However, it has no impact on your long term devotion to each other. Your relationship has survived much more than many face in 50 years.:woot:

Keep your spirits up kiddo.:rock:
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hugs033.gif



Rae us old farts (especially Buckeye) LOL! know about this stuff. Better to delay the wedding than have that special day ruined by health issues. If the man will stand beside you now it's a good bet he'll be with down the road.

It sounds like your [SIZE=+2]Patient’s Bill of Rights[/SIZE] were violated. Time to get busy.

Contact Patient Advocacy at that hospital and file a complaint. It really will light a fire under them. I've had a couple of incidents at the local military hospital over the years where I went to Patient Advocacy and got great results.

[SIZE=+1]American Hospital Association[/SIZE]
[SIZE=+1]MANAGEMENT[/SIZE] [SIZE=+1]ADVISORY[/SIZE]
​
[SIZE=+2]A Patient’s Bill of Rights[/SIZE]
[SIZE=+0]A Patient's Bill of Rights was first adopted by the
American Hospital Association in 1973.[/SIZE]
This revision was approved by the AHA Board of Trustees on October 21, 1992.
[SIZE=+1]
Introduction[/SIZE]
Effective health care requires collaboration between patients and physicians and other health care professionals. Open and honest communication, respect for personal and professional values, and sensitivity to differences are integral to optimal patient care. As the setting for the provision of health services, hospitals must provide a foundation for understanding and respecting the rights and responsibilities of patients, their families, physicians, and other caregivers. Hospitals must ensure a health care ethic that respects the role of patients in decision making about treatment choices and other aspects of their care. Hospitals must be sensitive to cultural, racial, linguistic, religious, age, gender, and other differences as well as the needs of persons with disabilities.
The American Hospital Association presents A Patient's Bill of Rights with the expectation that it will contribute to more effective patient care and be supported by the hospital on behalf of the institution, its medical staff, employees, and patients. The American Hospital Association encourages health care institutions to tailor this bill of rights to their patient community by translating and/or simplifying the language of this bill of rights as may be necessary to ensure that patients and their families understand their rights and responsibilities.
[SIZE=+1]Bill of Rights[/SIZE]
These rights can be exercised on the patient’s behalf by a designated surrogate or proxy decision maker if the patient lacks decision-making capacity, is legally incompetent, or is a minor.

  1. The patient has the right to considerate and respectful care.

  2. The patient has the right to and is encouraged to obtain from physicians and other direct caregivers relevant, current, and understandable information concerning diagnosis, treatment, and prognosis.

    Except in emergencies when the patient lacks decision-making capacity and the need for treatment is urgent, the patient is entitled to the opportunity to discuss and request information related to the specific procedures and/or treatments, the risks involved, the possible length of recuperation, and the medically reasonable alternatives and their accompanying risks and benefits.

    Patients have the right to know the identity of physicians, nurses, and others involved in their care, as well as when those involved are students, residents, or other trainees. The patient also has the right to know the immediate and long-term financial implications of treatment choices, insofar as they are known.

  3. The patient has the right to make decisions about the plan of care prior to and during the course of treatment and to refuse a recommended treatment or plan of care to the extent permitted by law and hospital policy and to be informed of the medical consequences of this action. In case of such refusal, the patient is entitled to other appropriate care and services that the hospital provides or transfer to another hospital. The hospital should notify patients of any policy that might affect patient choice within the institution.

  4. The patient has the right to have an advance directive (such as a living will, health care proxy, or durable power of attorney for health care) concerning treatment or designating a surrogate decision maker with the expectation that the hospital will honor the intent of that directive to the extent permitted by law and hospital policy.

    Health care institutions must advise patients of their rights under state law and hospital policy to make informed medical choices, ask if the patient has an advance directive, and include that information in patient records. The patient has the right to timely information about hospital policy that may limit its ability to implement fully a legally valid advance directive.

  5. The patient has the right to every consideration of privacy. Case discussion, consultation, examination, and treatment should be conducted so as to protect each patient's privacy.

  6. The patient has the right to expect that all communications and records pertaining to his/her care will be treated as confidential by the hospital, except in cases such as suspected abuse and public health hazards when reporting is permitted or required by law. The patient has the right to expect that the hospital will emphasize the confidentiality of this information when it releases it to any other parties entitled to review information in these records.

  7. The patient has the right to review the records pertaining to his/her medical care and to have the information explained or interpreted as necessary, except when restricted by law.

  8. The patient has the right to expect that, within its capacity and policies, a hospital will make reasonable response to the request of a patient for appropriate and medically indicated care and services. The hospital must provide evaluation, service, and/or referral as indicated by the urgency of the case. When medically appropriate and legally permissible, or when a patient has so requested, a patient may be transferred to another facility. The institution to which the patient is to be transferred must first have accepted the patient for transfer. The patient must also have the benefit of complete information and explanation concerning the need for, risks, benefits, and alternatives to such a transfer.

  9. The patient has the right to ask and be informed of the existence of business relationships among the hospital, educational institutions, other health care providers, or payers that may influence the patient's treatment and care.

  10. The patient has the right to consent to or decline to participate in proposed research studies or human experimentation affecting care and treatment or requiring direct patient involvement, and to have those studies fully explained prior to consent. A patient who declines to participate in research or experimentation is entitled to the most effective care that the hospital can otherwise provide.

  11. The patient has the right to expect reasonable continuity of care when appropriate and to be informed by physicians and other caregivers of available and realistic patient care options when hospital care is no longer appropriate.

  12. The patient has the right to be informed of hospital policies and practices that relate to patient care, treatment, and responsibilities. The patient has the right to be informed of available resources for resolving disputes, grievances, and conflicts, such as ethics committees, patient representatives, or other mechanisms available in the institution. The patient has the right to be informed of the hospital's charges for services and available payment methods.
The collaborative nature of health care requires that patients, or their families/surrogates, participate in their care. The effectiveness of care and patient satisfaction with the course of treatment depend, in part, on the patient fulfilling certain responsibilities. Patients are responsible for providing information about past illnesses, hospitalizations, medications, and other matters related to health status. To participate effectively in decision making, patients must be encouraged to take responsibility for requesting additional information or clarification about their health status or treatment when they do not fully understand information and instructions. Patients are also responsible for ensuring that the health care institution has a copy of their written advance directive if they have one. Patients are responsible for informing their physicians and other caregivers if they anticipate problems in following prescribed treatment.
Patients should also be aware of the hospital's obligation to be reasonably efficient and equitable in providing care to other patients and the community. The hospital's rules and regulations are designed to help the hospital meet this obligation. Patients and their families are responsible for making reasonable accommodations to the needs of the hospital, other patients, medical staff, and hospital employees. Patients are responsible for providing necessary information for insurance claims and for working with the hospital to make payment arrangements, when necessary.
A person's health depends on much more than health care services. Patients are responsible for recognizing the impact of their life-style on their personal health.
[SIZE=+1]Conclusion[/SIZE]
Hospitals have many functions to perform, including the enhancement of health status, health promotion, and the prevention and treatment of injury and disease; the immediate and ongoing care and rehabilitation of patients; the education of health professionals, patients, and the community; and research. All these activities must be conducted with an overriding concern for the values and dignity of patients.
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Correct me if I'm wrong, Rae, but don't you have TLE? And aren't hallucinations a type a seizure that can be associated with TLE? Umm..because that's how a psychiatrist in Austin who was part of the team of docs assigned to me because of the brain injury determined that I didn't have some kind of mental illness, I had TLE from the brain injury, even though the neurologist wouldn't consider the possibility of seizures because the EEG was normal (I get that "radio but not a radio" thing all the time which is technically classified as an hallucination and have had a couple instances when under a great deal of stress where it's seemed like I was literally floating outside of my body...which is also technically considered an hallucination, but the shrink in Austin said that nope, those are actually seizures). The shrink sent me back to the neurologist with his findings, the neurologist sent me to a neuropsychologist, and the neuropsychologist's tests definitively proved that, yep, it was a pretty clear case of brain injury and seizures and sent me back to the neurologist for further testing and medication to control the seizures.

Whatever docs you're having to deal with up there need b****slapped and then sent back to school for some more training in their field...

*hug*
 
I have both epilepsy and pseudo-seizures. They are real seizures, no matter what the cause. A V-EEG will show up either or both causes. That does not matter right now.

Rae, this is the care you should be getting, Hospital:

1. Side rails to keep you from falling out of bed.
2. Padding on the side rails.
3. Elevate your head about 6-10 inches
4. Your doctor should be working on different combos of medicines to stop the seizures.

I am on Mysoline for my arms and legs jerking.

Care at home:

1. Rest and have someone else do the housework. Take care of yourself. We all care for you.
2. Put grip bars in the shower/bathtub. That will give you something to hold on. Hire someone who knows how to put them in.
3. No glass in shower/bathtub.
4. Buy a shower chair at WalMart to use when you need it.
5. When you start having an aura, sit in a lazy chair that has big padded sides so you do not fall out.
6. Anything in the middle of the room, that you can fall on, move it out of the way. I had to move a marble table from the middle of my living room.

Try to stay calm and remember we all care for you.
 
:e:

Hi Rae,

Very sorry to hear you are going through such a tough time at the moment. Hoping every thing improves for you very soon. Think you should be reporting the doctors and nurses in your care while you were in hospital - their lack of concern, treatment and care to your needs and your epilepsy needs to be reported - so, that hopefully it won't happen ever again ever to you or any one else. I also hate their ignorant and arrogarant attitude towards you - doctors, nurses, paramedics and all other medical personnel should all treat thier patients with the utmost repsect and give the patient the very best care they can, at all times.

Hoping you do have your wedding and that when you have it - you are able to fully enjoy it - and that you will have the time of your life - and that you have and live a long a happy marriage to Chad. Wishing you the very best!!!

I know you will get through this hard time - and that you will be a much stronger person then you already. You already are a very stronge individual - this will make you even stronger!!! Keep coming on hear - and when you need support, comfort, sympathy, help - whatever - we will give it to you.

Susan

Miss Choccy

:e:
 
Rae I am so sorry for what you are going through we as said before are all here for you. I have real seizures that are temporal yet do not show up on EEG and have a "real" seizures the are pseudo not fake my siezures are believed shockingly with both in agreement my Psychiatrist and Epileptologist to come from abuse, genetic predisposition and even chemical damage from prescription medication my mother had to take when pregnant that caused other birth defects.

The only thing wrong here is poor medical treatment and disrespect for you as a person and patient and it is ridiculous. I know things are hard right now (I recently had a hallucinating seizure myself) but please keep talking to us and we will all keep supporting you we all care about you very much.

I fight Major depression and if you ever need to talk I will listen feel free to PM me. You Are in my thoughts and prayers.

John
 
Miss Choccy
:agree:

Rae, look forward to your beautiful wedding that we can all talk about.
 
thanks birdbomb I'm in Canada so I dont know how those effect me. I've been looking into applying for disability at the moment. any Canadians know how to do that? I have had at least one tonic clonic a day for the last 2 weeks and yesterday got back from the hospital again because I stopped breatheing from one. I cant work when I am exhaused after 2 hours of being awake,
 
Take it easy Rae. I remember when Stacy was having TCs every other day or so. It takes a big toll on you. Baby steps to a full recovery.

Your last post was a joy to read - much better composed than the previous. Cheers.
 
Each Province is a little different I think with disability support. You could start with ServiceLink which will help assess if you qualify for certain disability services.

Your post is SO much more legible today. What a relief!
 
I've not been on in a few days, so only just caught up on this thread.

Rae - it's ridiculous the way you have been treated. If you ever need to chat, you know we're all here for you *hugs*
 
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