posted
SCROLL DOWN TO SEE BETTY'S EDITING OF THIS POST SO IT IS EASIER TO READ!
My beautiful, loving, intelligent, 20 year old daughter has completely lost her mind and is destroying our family.
She has long term chronic Lyme with some question as to whether it is congenital.
The psychiatric symptoms are rapidly getting worse.
She is still in the U.S. with some moron incompetent non-LLMD who keeps promising to follow up on Dr. C's treatment plan but after 8 weeks has not.
She has no income or insurance so is with a low income health center and has no other choice of doctors.
She could come here to Canada where I live and have her health care covered but she will not
because she is so traumatized by the thought of leaving her best friend and
is so out of control obsessed with the unfairness of it all,
meaning being so sick for so long and now she has to leave everything
(the one friend who hasn't abandoned her) and start over in a different country.
Like Canada is Iran or something?
Nicole is making all these horrible accusations against me
to justify her decision not to move to Canada and it is destroying my entire family.
She says my old boyfriend and his friends repeatedly raped her, but I never left my kids with him.
She says I put her in a psychiatric hospital when she was a kid and I hid it from my ex-husband, which never happened.
She says I used to kick her out of the house and she would have to sleep in the park. Never happened.
She says I was never there for her, never helped her, only cared about myself and she was totally alone for her whole sickness.
Reality is I had to quit working to care for her FOR YEARS and my current husband (not even her father!)
and I lost all our assets paying for her medical care and
carting her all over the country seeing specialists.
I can't tell you how many hours EVERY SINGLE DAY where spent massaging her neck and shoulders due to intense pain, etc.
When I remind her of this - in more gentle supportive words -
she screams and yells at me that I just want to make her feel guilty for all her illness has put our family through.
She made two other rape claims with a couple years ago -
one a rape-drug scenario at a teen dance
and another a ``boyfriend'' no-one, including her best friend at the time, ever heard of.
She later recanted with various reasons why she made up these stories.
Now she has resurrected those claims and blames me for not protecting her.
I am largely managing her medical care, but it is like pulling teeth to get anything done.
I got her to the LLMD (Dr. C), continually negotiate with the medical program
(should be called Lack-of-Medical Program) she is part of, write letters, blah blah blah.
Since she is not getting treatment she is not getting better and has no hope of getting better.
But she still has tremendous pain and needs heavy duty narcotics.
For some reason she wants me to negotiate with the docs for her pain meds.
Insists I do it.
I feel that the narcotics are simply allowing her to stay sick.
If she can take the edge off the pain she can keep things from getting so bad that she HAS to get treatment,
which would mean moving to the evil, detested Canada.
I feel by continuing to negotiate for her pain meds I am enabling her to stay in the US
where she has no medical care and thereby enabling her
to continue to slide into oblivion.
I finally said I couldn't do any more for her.
That I was unable to negotiate better medical care for her in the U.S
(and I have called every program available, at least 25 low-income programs, and have had extensive conversations
with Omanas's office, her Representatives, Senator, etc, so this has been no small effort)
and was unwilling to continue negotiating for narcotics as long as she
CHOOSES to stay where she is NOT getting treatment and
REFUSES to accept the treatment that IS AVAILABLE.
Of course that led to crying, pitiful accusation to my whole family that I would not help her,
that nobody would help her,
all I care about is forcing her to come to Canada to live with me,
that I'm manipulating the situation, etc.
So I have all these conference calls with various family members,
smooth everything over as best I can,
explain my position a million times, blah blah blah.
Then N has a pain crisis and wants me to get her meds.
I said I would not and try to re-explain my position.
She had a screaming, raging, crying, threatening to kill herself, tantrum.
The evil, horrible things she said to and about me are beyond comprehension.
Says if I don't do it she is killing herself RIGHT NOW!
``Make the call Mom, or I'm walking out the door and you will never see me again!
I'm dead Mom, the door is open and no-one will ever find my body!''
plus all these horrible, disgusting accusations about me, and how I never help her, etc.
So I made the call - to the police!
They took her to the hospital and the intake nurse recommended psychiatric hospitalization.
So I made all these calls to Dr. C, her local Doc, etc. trying to get everyone to talk to each other so they could actually HELP her.
But since she has no insurance they denied her admission.
She went home.
So she spent the next several hours repeatedly calling me -
as soon as I would hang up, the phone would be ringing again - for hours.
Vile, poisonous accusation hurled at me.
When I stopped answering she started leaving vile messages on the voice mail.
Every time the VM would cut her off for time she would immediately call back and continue gutting me.
Nicole's accusations have resulted in my ex and my son, who live with N,
calling my parents and make accusations against me.
Neither one of them (EX AND SON) speak to me anymore.
I doubt they know N is saying as vile of things about them as she says about me.
I am hesitant to tell them because I am afraid it would be the final break between N and I,
though I am getting close to not caring about that anymore, or at least seeing the futility.
My father wants the entire family to fly to Chicago for a conference and
put everybody on the same page so everybody knows what is going on and
N can't keep telling different stories to different people.
N has told my parents horrible things about me, my ex and my son.
When I asked her about them (while my father was conferenced in, which N did not know)
N denied saying them and made accusations against my parents.
All my mother does is cry. Every day.
One of my sisters supports me. Another supports N and co-signs her B.S.
My husband thinks N is just an addict.
My youngest daughter, who lives with me, is having panic attacks at school
thinking her beloved sister is going to die and may have been told terrible things by Nicole,
but I can't get a straight answer on that.
I think I have made a bad decision NOT to tell my ex and son what N is saying about them a long time ago.
I thought I was preventing a permanent break between N and I,
but I now think I am just enabling her to manipulate us all.
I so fear completely losing my daughter
(the real one, not this horrible creature who is inhabiting her body)
and not having a chance to ever see her again when she does get well and
re-emerges from whatever vile body-snatcher is inhabiting her skin.
I fear a permanent break will mean she has NO CHANCE of getting well
because I don't see any way for her to get well without insurance in the US.
At least in Canada I already have an integrative Dr. willing to follow Dr. C's treatment plan,
refer her to specialists and complementary care practitioners, etc.
If we have a permenant break she will never have that option.
And she is incapable of managing her own health care and her dad doesn't get the importance
(he says to me "She is an adult, it is up to her")
so what will happen to her?
What is the lessor of two evils?
BIG QUESTION - IS THIS REALLY CAUSED BY LYME OR IS SHE JUST A MENTALLY ILL ADDICT AND THE LYME IS A COMPLETELY SEPERATE MEDICAL ISSUE?
Where is the magic answer book?
I know this post is too long and I am sorry about that.
Putting it all down is therapeutic, I guess.
[ 26. April 2008, 08:41 PM: Message edited by: Nicoles Mom ]
Posts: 93 | From Illinois / Ontario | Registered: Jan 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Nicole's Mom,
You have probably done the right thing. Tough Love. Refusing the pain meds (narcotics) to force Nicoles hand was a good plan. However, it didn't pan out as you had anticipated....yet.
It must be horrible to watch your daughter be transformed in this way. I can absolutely tell you that Lyme can cause many mental disruptions, some worse than others.
Several people here battle these demons....but they will never be defeated w/narcotics. Some folks have had psychotic episodes. Some rage, bad rage, (me), severe anxiety and depression. Most improve w/ TBD treatment.
I really do not know what to tell you, other than what you already know. Nicole has to make the choice to want help or not.
difficult for you. Praying for a solution for you.
feelfit Posts: 3975 | From usa | Registered: Aug 2007
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bettyg
Unregistered
posted
i feel all the hurt, anger, pain, betrayal, false acquisitions, 24/7 stress between you/her and all extended family members!
reformatting this since many folks can't read BROKEN UP SENTENCES and 1-liners vs. like the below. please try to do this in future ok! big thanks
quote:Originally posted by Nicoles Mom:
My beautiful, loving, intelligent, 20 year old daughter has completely lost her mind and is destroying our family.
She has long term chronic Lyme with some question as to whether it is congenital. ****************************************
The psychiatric symptoms are rapidly getting worse.
She is still in the U.S. with some moron incompetent NON-LLMD who keeps promising to follow up on Dr. C's treatment plan but after 8 weeks has not.
She has NO income or insurance so is with a low income health center and has no other choice of doctors.
She could come here to Canada where I live and have her health care covered but she will NOT because she is so traumatized by the thought of leaving her best friend.
She is so out of control obsessed with the unfairness of it all, meaning being so sick for so long and now she has to leave everything (the one friend who hasn't abandoned her) and start over in a different country. Like Canada is Iran or something?
Nicole is making all these horrible accusations against me to justify her decision not to move to Canada and it is destroying my entire family.
She says my old boyfriend and his friends repeatedly raped her, but I never left my kids with him.
She says I put her in a psychiatric hospital when she was a kid and I hid it from my ex-husband, which never happened.
She says I used to kick her out of the house and she would have to sleep in the park. Never happened.
She says I was never there for her, never helped her, only cared about myself and she was totally alone for her whole sickness.
Reality is I had to quit working to care for her FOR YEARS and my current husband (not even her father!) and I LOST ALL OUR ASSETS paying for her medical care and carting her all over the country seeing specialists.
I can't tell you how many hours EVERY SINGLE DAY where spent massaging her neck and shoulders due to intense pain, etc.
When I remind her of this - in more gentle supportive words - she screams and yells at me that I just want to make her feel guilty for all her illness has put our family through.
She made two other rape claims with a couple years ago: one a rape-drug scenario at a teen dance, and another a ``boyfriend'' no-one, including her best friend at the time, ever heard of.
She later recanted with various reasons why she made up these stories. Now she has resurrected those claims and blames me for not protecting her.
I am largely managing her medical care, but it is like pulling teeth to get anything done.
I got her to the LLMD (Dr. C), continually negotiate with the medical program (should be called Lack-of-Medical Program) she is part of, write letters, blah blah blah.
Since she is not getting treatment she is not getting better and has no hope of getting better.
But she still has tremendous pain and needs heavy duty narcotics. For some reason she wants me to negotiate with the docs for her pain meds. Insists I do it. I feel that the narcotics are simply allowing her to stay sick.
If she can take the edge off the pain she can keep things from getting so bad that she HAS to get treatment, which would mean moving to the evil, detested Canada.
I feel by continuing to negotiate for her pain meds I am enabling her to stay in the US where she has no medical care and thereby enabling her to continue to slide into oblivion.
I finally said I couldn't do any more for her. **********************************************
That I was unable to negotiate better medical care for her in the U.S (and I have called every program available, at least 25 low-income programs, and have had extensive conversations with OBAMA's office, her Representatives, Senator, etc, so this has been no small effort).
She was unwilling to continue negotiating for narcotics as long as she CHOOSES to stay where she is NOT getting treatment and REFUSES to accept the treatment that IS AVAILABLE.
Of course that led to crying, pitiful accusation to my whole family that I would not help her, that nobody would help her, all I care about is forcing her to come to Canada to live with me, that I'm manipulating the situation, etc.
So I have all these conference calls with various family members, smooth everything over as best I can, explain my position a million times, blah blah blah.
Then N has a pain crisis and wants me to get her meds. I said I would not and try to re-explain my position.
She had a screaming, raging, crying, threatening to kill herself, tantrum. The evil, horrible things she said to and about me are beyond comprehension.
Says if I don't do it she is killing herself RIGHT NOW! ``Make the call Mom, or I'm walking out the door and you will never see me again! I'm dead Mom, the door is open and no-one will ever find my body!'' plus all these horrible, disgusting accusations about me, and how I never help her, etc.
So I made the call - to the police! They took her to the hospital and the intake nurse recommended psychiatric hospitalization.
So I made all these calls to Dr. C, her local Doc, etc. trying to get everyone to talk to each other so they could actually HELP her. But since she has NO INSURANCE they denied her admission. She went home.
So she spent the next several hours repeatedly calling me - as soon as I would hang up, the phone would be ringing again - for hours. Vile, poisonous accusation hurled at me.
When I stopped answering she started leaving vile messages on the voice mail. Every time the VM would cut her off for time she would immediately call back and continue gutting me.
Nicole's accusations have resulted in my ex and my son, who live with N, calling my parents and make accusations against me. Neither one of them (EX AND SON) speak to me anymore.
I doubt they know N is saying as vile of things about them as she says about me. I am hesitant to tell them because I am afraid it would be the final break between N and I, though I am getting close to not caring about that anymore, or at least seeing the futility.
My father wants the entire family to fly to Chicago for a conference and put everybody on the same page so everybody knows what is going on and N can't keep telling different stories to different people.
N has told my parents horrible things about me, my ex and my son. When I asked her about them (while my father was conferenced in, which N did not know) N denied saying them and made accusations against my parents. All my mother does is cry. Every day.
One of my sisters supports me. Another supports N and co-signs her B.S. My husband thinks N is just an addict.
My youngest daughter, who lives with me, is having panic attacks at school thinking her beloved sister is going to die and may have been told terrible things by Nicole, but I can't get a straight answer on that.
I think I have made a bad decision NOT to tell my ex and son what N is saying about them a long time ago.
I thought I was preventing a permanent break between N and I, but I now think I am just enabling her to manipulate us all. *************************************
I so fear completely losing my daughter (the real one, not this horrible creature who is inhabiting her body) and not having a chance to ever see her again when she does get well and re-emerges from whatever vile body-snatcher is inhabiting her skin.
I fear a permanent break will mean she has NO CHANCE of getting well because I don't see any way for her to get well without insurance in the US.
At least in Canada I already have an integrative Dr. willing to follow Dr. C's treatment plan, refer her to specialists and complementary care practitioners, etc.
If we have a permenant break, she will never have that option. And she is incapable of managing her own health care and her dad doesn't get the importance (he says to me "She is an adult, it is up to her") so what will happen to her?****************************************** What is the lessor of two evils?
BIG QUESTION - IS THIS REALLY CAUSED BY LYME OR IS SHE JUST A MENTALLY ILL ADDICT AND THE LYME IS A COMPLETELY SEPERATE MEDICAL ISSUE? Where is the magic answer book?
I know this post is too long and I am sorry about that. Putting it all down is therapeutic, I guess.
mom, we have social worker members on this board, i'll let them interject their comments.
praying for a WIN-WIN situation! otherwise to me, there is known as TOUGH LOVE, and she has reached that point.
i'd also inform her dad/brother everything she has said about them as well; why take on THAT BURDEN as well; you've got plenty on your plate already. praying for you..
ps...would you edit your post by clicking on paper pencil icon to RIGHT of your name, and just add a commment at the TOP that Bettyg has reformatted your entire post for easier reading.
this way others don't hurt their eyes/neuro lyme in brain trying to read your post as is! when done, click edit send! thx Bettyg
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Nicole's mom,
I feel so horrible for you and your family. What I would do is schedule an intervention w/Nicole and bring to light everything you put in this post. As a matter of fact, I would provide everyone who would be at the intervention with a copy of exactly what you wrote here. That way everyone would be on the same page.
Maybe tell everyone you're planning the intervention, including your ex, and show them what you wrote and see if they are willing to participate to help Nicole and get her the help she so terribly needs.
Just an idea. I know it's a pretty extreme approach but it seems that there is no easy way to deal w/this matter. I can't see how it could make it any worse.
Posts: 2541 | From Northeast | Registered: Jan 2008
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
.....I think she should go live w/you. You're the only one willing to go out on a limb for her. No one has gone out of their way for me to try to get me good medical care. I only wish I had someone like you on my side. And when I was at my worst and had doctors trying to convince me and everyone else I was crazy, I really needed someone to stick up for me b/c I didn't have the ability to stick up for myself.
Also, a lot of her psychotic behavior almost sounds like she is manic-depressive or bipolar. My father is bipolar so I have first hand experience with it. Lyme can make someone bipolar.
Posts: 2541 | From Northeast | Registered: Jan 2008
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Nobody can say for sure if this is the Lyme or a seperate illness. If she is prone to a mental illness, the stress of living with Lyme could definitely trigger the onset of the illness. But Lyme can cause psychiatric symptoms as well.
I am wondering if there is an organization near you that helps people who are mentally ill that could coach you on how to best help Nicole?
I have no idea if it would help, but if you have contact with her doctor you could bring up the issue of metnal illness in the hipes he will refer her to a psychiatrist. Whether it is caused by the Lyme or not, psychiatric medication may be able to help her.
There are medical privacy laws in the U.S. so her doctors cannot tell you anything about her care without her permission. However, you should still be able to tell them information as long as they do not say anything back.
Of course, you would be risking pushing her away if she finds out you said something and it angers her. That's why I would suggest trying to reach out a to a group that works with the mentally ill to see if they have advice on what to do.
Everybody visiting her may be a good option. Perhaps if you were there it would help her see that you care. Maybe you can suggest that you can go with her to a psychiatrist.
Another idea, call her county health department. Some counties are really good about helping people access health care resources. They may know free or low cost psychiatric services, or be able to negotiate with a facility to admit her if necessary. They also may have a crisis line to call in case of an emergency.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
It sounds clear to me that Nicole is addicted to narcotics. I don't believe she will be able to treat lyme effectively unless or until she gets the drug addiction managed first.
Getting pain meds will remain her top priority. Narcotic withdrawl is so painful on top of the lyme pain she is already dealing with.
I wouldn't say that she is "nothing but an addict." She is many things, including your sweet intelligent daughter.
Could anyone blame her for trying to reduce her pain? It's just so sad that she has made her life even more difficult now.
Nicole may or may not believe the outrageous accusations she is making. So it's hard to say if she is psychotic or not.
My guess is that some part of her mind is trying to place blame on someone or something for the pain she experienced throughout her childhood, through nobody's fault. Living with lyme and dealing with doctors can feel like being raped.
It sounds to me like most of this outrageous behavior is coming out of the narcotics addiction.
It might be a good idea for you to go to an AlAnon or NarcAnon meeting, so you can get a sense of what is what from other people who are going through this.
On behalf of your daughter, who is unable to say this, thank you for taking care of her, loving her, protecting her, worrying about her, and trying to heal her.
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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quote:Originally posted by bejoy: On behalf of your daughter, who is unable to say this, thank you for taking care of her, loving her, protecting her, worrying about her, and trying to heal her.
I'm sorry you are going through this.
AMEN!!
An intervention is needed!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
even though she is uninsured she is entitled to hospital care if it is deemed necessary. actually getting her to the point of admission is no easy task.
one place you may find help for negotiating the system here in the states is NAMI, national alliance for the mentally ill. www.nami.org.
i speak from experience, i have a son who has bipolar disorder and was uninsured for his last hospitalization.
an excellent book on how to live with and speak to a mentally ill family member is i'm not sick! i do not need help, by xavier amador.
The author is a clinical psychologist who is the primary caregiver for his older brother. he speaks from both the clinical side and that of family members.
dealing with a mentally ill family member can be overwhelming at times. reaching out and finding support from others who are in the same place can help you negotiate the tough road ahead.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Thanks, Lymedinva, I was thinking something similar. N's Mom, please consider getting some advise from a psychiatric professional that you trust, both for yourself and for your other daughter. Dealing with someone who is like this, for whatever reason, is draining and upsetting, to say the least.
I hope you will guard yourselves while you are trying to help N.
Take care, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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I am familiar with addiction, actually was a certified addictions counselor in the 80's.
My problem is I don't know how to seperate the true need for pain killers from an addiction to pain killers.
She was better for a couple years (up until this last fall) and was off pain killers for those couple years except for occational flares.
Prior to that she had been on narcotic pain killers regularly for years.
I talked to Dr. C about it and he seems to think that her Lyme pain - and she does have it bad, no question about it - is a greater threat to her recovery than the narcotics.
I don't know. I just don't know.
I do know, however, that there is no point to anything, including pain relief, if she is not getting full treatment.
That I can stick with.
I can do that without fearing I am making a bad or poorly informed decision and thereby hurting her.
Posts: 93 | From Illinois / Ontario | Registered: Jan 2008
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Just a couple of notes. Before I start, it is clear to me that you love your daughter and are doing everything you can.
If she does have a seperate mental illness, then be aware that many mental illnesses are treatable. That doesn't mean curable. But with medication the symptoms can be almost completed eliminated.
Putting the potential addiction issue aside, I'm not sure I understand your statement that there is no point to pain relief unless she is getting full treatment. I know that it is vital that she receive full treatment and that she might only get treatment if that is the only way she can access pain full treatment. I am not questioning your decision or tactic, just the statement.
it is possible that the pain is one of the things keeping her from getting treatment. Physical pain can destroy a person. It is an incredible betrayal of the body to live in chronic pain.
Ideal pain treatment does not just use narcotics. It uses a combination of medications and modalities to treat the pain, and it's possible that she is just not in a situation where she can find proper pain treatment right now.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Hi Nicole's Mom,
I agree with Aniek: have all the non-narcotic options been tried?
I want to caution you that though you are in Canada for support for your daughter, please expect only the minimum from the Canadian health care system.
I understand that there is one psychiatrist who is working with Lyme patients in Ontario. If you haven't already, I would suggest being in touch with him. I think he would be of the most true help for your daughter. Without him on board, and your daughter on board with him, I wouldn't touch coming to Canada with a country long bargepole. Even with him on board, I wouldn't bring her here full time. That is because I have first hand experience every day dealing with the Canadian health care system. As much as there is difficulty having Lyme in the US and getting effective treatment, it's far worse in Canada.
You say that she is unable to obtain any other GP due to her income / insurance situation. I know you have done so much so far, but have you tried posting in, "Seeking a Doctor" for a physician who will prescribe for her? I take it that Dr. C. is in another State, and that is the issue as to why she needs another doctor in the mix?
Best wishes at this difficult time,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
here's a link to an article by dr amador: insight article
while it seems hard to believe, this point made in the article, as well in other works by dr. amador, really explains a lot.
quote: Nearly 60% of the patients with schizophrenia and nearly 50% of the subjects with manic depression (with psychosis) were unaware of being ill.
he believes that for some reason the brain disorder that is part of these serious mental illnesses makes it impossible for the patients to recognize there is something wrong.
they perceive things, like hearing voices, as normal and nothing to be alarmed about.
quote: Poor insight is among the best predictors of nonadherence to treatment. It is common sense really. Who would want to take medicine for an illness they did not believe they had?
the book i mentioned earlier really helps family members learn how to talk to the ill person so they become willing to try treatment.
it worked in baby steps, and is more successful in some than others.
it had taken us 6 years to get to the point that our son is gaining insight and participating willingly in treatment and even attending support groups.
as for pain treatment i am in full agreement with aniek. before my pain was under control i lived for the moments that i would be able to do something that would relieve it, even briefly.
now with my broken shoulder there are times when i awaken at night in tears because it hurts so much that i can't fall back to sleep.
i have learned to check and see if i can take another pain killer for my shoulder, which allows me to fall back to sleep.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
Regarding not continuing to beg narcotics for Nicole if she is not getting complete treatment, perhaps I should have said ``adequate'' treatment.
I feel I am contributing to her making poor choices, IE choosing to stay where she can not get treatment, by making the pain bearable for her.
I think she will stay in that situation as long as she can bear it, and I am making it easier for her to bear it while she dies.
She is not just ``sick'', she is loosing her sight, sometimes can't walk, finds herself in her car not knowing how she got there, where she is or where she was going.
She often can't use her hands to button her own blouse.
Understand this: I think the narcotics are, in the overall context of her illness, the least of her problems and could be dealt with later if they are in fact a problem.
I know she needs pain relief.
I just don't want to be standing at her funeral knowing I ``helped'' her to stay where she wasn't getting treatment and she died.
Or was permanently disabled.
I think I am enabling her to stay where she doesn't get treated.
I am not sure this is the right decision nor is it necessarily the final one; I am just struggling to make one that won't help her in the short term while hurting her in the long run.
I want to make it clear that if she can find a way to get treatment in the US I will do all I can.
I just can't do any more to make that happen because there isn't any more to try.
Regarding the comment on the lack of care in Canada, I have to say I think Canadians have been brain-washed into thinking their system is so much less than it is.
I have lived IN BOTH SITUATIONS.
I know in some areas there is a shortage of doctors.
But I live near Ottawa and have not found that here.
I simply made some calls and set up appointments with 2 G.P.s (my family physician and another new one in the area to see if he is ``better'').
Also with an integrative Doctor (certified Western and Naturopath) and a doctor who has recently started specializing in Lyme, other infectious diseases and travel medicine.
They state willingness to treat under direction of the specialist.
We will interview them all with treatment plan in hand and choose the best.
She already has a referral to a Neurologist and a therapist based on an ER visit while she was visiting over Christmas.
It takes me 2 days to get an appointment with my GP.
Quite frankly, I think Canadians have a false vision of their health care based on political and media spin.
And Americans do to.
When was the last time a Canadians child died of a treatable infection (the flu!) because the Mom was turned away from 4 ER's due to lack of insurance?
Happens all the time in the US.
When was the last time a Canadian ER made it written policy to pay for indigents to be taken by cab to the local homeless shelter rather than treat them?
This is standard policy in several large city ERs.
And don't think I don't know what I am talking about with policy.
My sister was a big wig with the AMA (American Medical Association) for decades and finally quit recently in disgust.
So I know the difference between policy, reality and spin from the inside.
Canadians complain because they have such long wait times.
Wait times in a waiting room?
Americans regularly wait 2 - 4 hours in a doctors office and 12 in an ER and think nothing of.
In the US we regularly have to set appointments weeks in advance to see our doctor and wait 1 - 3 months for a specialist.
When Canadians do the same they complain this is evidence their system doesn't work and it is front page political news.
Americans call it ``getting an appointment'' and consider it normal.
Canadians call it unacceptable ``wait times''.
Same situation, two entirely different views.
Yes, she might have had difficulty getting a diagnosis in Canada.
But she has a diagnosis and a specialist with a treatment plan.
All she needs is a local doc to coordinate it.
And while I had to make a large number of calls (about 12) to find four doctors willing to treat her, I DO have several doctors willing to treat her for Lyme under the direction of a Lyme specialist.
They are willing to provide her with referrals to the specialists she needs.
For Gods sake, she only has a choice of one incompetent doctor in the low income program that covers her state and does not have the right to see specialists!
He works at getting referrals approved, but she has waited since November for approval to a Neurologist, Psychiatrist and pain clinic!
And even if her does push the referral through we are looking at at least 3 months wait to get in.
So what are we talking here with wait times - a minimum of 10 months from the initial referral request to first appointment if it gets approved tomorrow?
How does that compare to Canadian wait times?
The Neurologist referral we got at the Canadian ER took 2 days to get the physical referral and would have taken 3 weeks for the appointment had she stuck around, which she did not.
There is the difference between WELL INSURED Americans and Canadians without supplemental insurance.
But that is comparing Apples to Oranges.
I loved it when I had good insurance.
But we are not talking about someone with ANY insurance.
We are talking about someone who has NO INSURANCE in the U.S. and so has NO RIGHT TO ANY HEALTH CARE WHAT SO EVER.
Don't tell me about how they have to treat in medical necessity.
The reality between political spin and reality is enormous.
The reality between what most think is a medical necessity and what the policy actually covers is enormous.
Nicole's problems are not considered a medical necessity because it does not require (go figure) immediate treatment to save her life right this minute and can not be treated (cured) with emergency medicine.
If she presented with a broken leg or heart attack she would have it set or be stabilized.
But she would not receive any follow up.
She would have to pay a doctor to handle non-emergence complications and take off the cast. Or she would have to cut it off herself.
She would get no physical therapy.
With a heart attack she would be stabilized and the immediate life threatening situation treated, but if she needed further treatment, a bypass, whatever, she is on her own.
Even little kids with leukemia have to have fundraisers to save their life because it is not IMMEDIATELY life threatening and can't be immediately resolved in an ER setting.
Give me a break.
Canbravelyme, I mean no disrespect and am grateful for the huge effort you make to support all of us here.
And am sure you have struggled with your illness in Canada.
People struggle to get treatment all over the world.
But until you have spent 8 years in the US with a critically ill child and no insurance (this is the key to the debate) please don't tell anyone else they are better off staying in the US UNLESS THEY HAVE HIGH QUALITY INSURANCE.
Not that many people have the option between the two countries which my daughter has... but you never know.
And to answere that last question, yes, the specialist is about 18 hours away so we need a local doc to coordinate specialists, tests, etc.
Posts: 93 | From Illinois / Ontario | Registered: Jan 2008
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Nicole's Mom,
I see you feeling tremendous strain.
I'm not interested in debating my point of view with respect to Canadian insurance. I have extensive first hand experience.
I know what our healthcare system is about now, what to expect, and what not to expect.
Best wishes of health and happiness to you and your daughter,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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