I have had so many medical problems over the years almost dying in 2006 from a Pulmonary Embolism then going on the roller coaster of weekly visits to the doctor for blood work to check my blood thinner levels, adjusting it etc and finally get off it in October 2007. I have felt pretty good this year good enough to work PT although I hurt afterwards from the Lupus, RA and Fibromyalgia.

Now I have tested Positive for the Lupus Anti-Coagulant and high homocysteine levels which means I am prone to blood clots, heart attacks, strokes etc. but I have had enough and I told my hematologist so yesterday that I am not willing to go back on the coumadin which is the blood thinner I just have had enough I am tired of being a pin cushion and of course I found out yesterday also that further testing shows another problem that requires weekly visits to the hematolgist for shots and blood work. I just cannot do this anymore I live at the Doctors office or the Local Hospital enough is enough and none of them are understanding my choice to not do something to prevent me from dying. All is right in my world my living will is done, my regular will, my funeral is pre-paid etc etc. DH is supporting me on this, DS Stefan doesnt know and wouldnt understand at 9, then again he probably would he has known mommy is sick since forever and knows my life revolves around Doctors visits. My older kids it doesnt matter what they think.

I just have had enough of the Nephrologist, Rheumatologist, Hematologist, Internist, Urologist, Infectious Disease/Immunologist, Psychiatrist and Therapist and all the medications and I am being treated like I am well crazy and should be locked up for refusing treatment, its my life, my money which I have none of now that DH is off work indefinitely and they have scheduled a meeting today at 4 pm at the hospital with all My providers to determine if I am mentally fit to make this decision and if I should be legally forced to take my medication, you know what I have my ducks in a row I have my reseach from online showing pros and cons and I could go 20 rounds with them about my diseases the treatments we have tried what has worked what has failed and I am clear as a bell and very happy with my decision.

Unless I have missed something somewhere legally It is my right to choose whether I want to receive medical care or not correct?

just kind of wanted to vent and not start a debate either but informed opinions are appreciated.

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~ Christine ~
Grammie to Trinity Lorayne Jean Keens Born June 9, 2011 Loving my awesome guitar picking 100% Country Boy boyfriend Kenny !
RIP Daddy~ 01/24/1930-06/01/2007 I miss you !
Dont Think you Can .. know you can ~ Jeff Hardy

Yes it is your right. I deal with patients all the time who reach the end of their ropes and say that they are tired of it all. That is your RIGHT. They are probably having a meeting to make themselves feel better. We see alot of doctors who continue to treat patients because they cant admit that they "failed". Even though patients have incurable diseases and have fought hard long battles they still look at it like a failure..
Good luck to you and stand your ground!!

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GO TONY!!!!!!!!!!! # 20!!!

I believe its your right, but on the other hand it's also your right to be a mother to your disabled 9 year old. I know you have all your ducks in a row, and are going threw more then most people should have to. But a mother can never be replaced, and I think Stephan deserves his mother to be around if it is medical possible. If your youngest was older, maybe I could understand but 9 is such a tender age still. Whatever is decided, I wish you and your family the very best.

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Chicago Bears!!!!
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Shufflin' on down, doin' it for you.
We're so bad we know we're good.
Blowin' your mind like we knew we would.
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Struttin' our stuff for everyone.
We're not here to start no trouble.
We're just here to do the Super Bowl Shuffle.

I believe its your right, but on the other hand it's also your right to be a mother to your disabled 9 year old. I know you have all your ducks in a row, and are going threw more then most people should have to. But a mother can never be replaced, and I think Stephan deserves his mother to be around if it is medical possible. If your youngest was older, maybe I could understand but 9 is such a tender age still. Whatever is decided, I wish you and your family the very best.
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That was exactly what I was coming to say.
I have a 9 year old and I know he would be devestated if I were gone.

Legally yes, it's your right. Morally, you owe it to your baby boy to continue the fight. He might never understand why you weren't willing to fight for him.

I'm sorry you're going through this. I wish there were some way to get rid of the pain for you.

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"Is God willing to prevent evil, but not able? Then he is not omnipotent. Is he able, but not willing? Then he is malevolent. Is he both able and willing? Then whence cometh evil? Is he neither able nor willing? Then why call him God? " ~Epicurus

"Legally yes, it's your right. Morally, you owe it to your baby boy to continue the fight. He might never understand why you weren't willing to fight for him.
"

I disagree... I think that she may be a better parent without the stress of fighting. I see many parents come in with kids and these poor kids practically live at the drs office or hospital with their parents. What kind of childhood is that? And for many of these people this has been going on for years and years. What fun is it for a child to have a parent that is constantly running to the dr or hospital? And both conditions taht she has described take a toll on your physically... Plus their treatment can wear you down worse... so what is better??

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GO TONY!!!!!!!!!!! # 20!!!

Yes, I believe it is a person's right to choose what they want to do regarding their medical care. However, a good doctor is basically programmed to save lives. There does come a point where the patient and doctor should be able to agree on a plan, and the doctor should support your plan.

I'm sure it's not easy constantly being at the doctor. I've not been in that situation myself, but, have known people that were. It is tiring, stressing, depressing, all of that. I can't imagine it's an easy choice for you to make, but, one that you and your DH have the right to make together. Maybe while you are still feeling "good" you could write a letter or do a journal for your DS (or all your children/loved ones) and tell them how you feel and why you are doing or did , the things you did. I'm sure that would be a comfort to them later on.

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Doing the right thing isn't always the same as doing the easy thing.

Stefan isnt technically disabled he is a GT student but gets special ed services for a visual motor skill problem of accomadative insufficiency and dysgraphia and he has ADHD we have applied for SSI for him mainly to get the Medicaid only because of the fact our insurance wont cover Occupational or Vision Therapy but its gonna be fight we already know more than likely will lose. Only other problem he is underweight from ADHD meds although I am pretty sure he takes after his daddy who is tall and skinny just like his older brothers and we have suspected aspergers for years but just underwent a comprehensive testing for it and he is not of the spectrum so I just have normal child who tests above grade level and falls behind because he cant write legibly from dysgraphia and has some quirkinees/nerdiness about him.

I am a DisAbled SAHM to him could my siggy file be mis-read?

I thought of Stefan with this decision and he has said how tired he is of me being sick and going to the Doctors or stuck at the hospital and not being able to go outside to play with him since I cant be out in the sun from medications or worrying about getting hurt and bleeding and bruising etc from blood thinners and other meds I want to be able to go out and toss a football with him, help him ride his bike, watch him skateboard etc etc not be on the sidelines sitting under the deck or umbrella somewhere. I have missed so much school stuff because I would be in the hospital for tests or running late because of a test at the hospital I cant do it anymore I want to be there for the school events.

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~ Christine ~
Grammie to Trinity Lorayne Jean Keens Born June 9, 2011 Loving my awesome guitar picking 100% Country Boy boyfriend Kenny !
RIP Daddy~ 01/24/1930-06/01/2007 I miss you !
Dont Think you Can .. know you can ~ Jeff Hardy

You are your own best or worst advocate when it comes to your health care.

I don't know so much that the medical providers are not understanding. It may be a case that they want to make sure that you have made this decision for yourself, that you mentally are ok w/ not pursuing care, and that you understand the extent of your condition and how it may deteriorate once you stop taking medication/receiving care.

The medical providers what to make sure that you have all the facts.
They may even recommend some counseling for you and your family. They may recommend you try treatment for this new diagnosis for 3-6 months to see what kind of impact it has. I know it seems like they think you are crazy, but it's hard for Drs. to give up sometimes. They are in the business of trying to save people--and it's hard to admit defeat.

You are in a difficult and trying position. Only you (and your family to some degree) can make this decision and be at peace with the decision. May you find the strength and wisdom to do the what is best for you and your family.

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Mental that one, I'm telling you. ---Ron Weasley, "Harry Potter and the Chamber of Secrets"

I've had my share of medical problems over the last few years, including two outbreaks of shingles in 2004 and again in 2006 that left me with PHN. I understand your frustration, and my situation isn't the same as yours.

Just think of one thing; can you imagine your son going to bed at night, crying for his mom and knowing she is never coming back? It would be heart wrenching for him.

While I know you are tired, and I'll keep you in my prayers. I am truly in awe of you and everything you've gone through.

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Catt
~ Mirror Mirror on the wall, I am my mother - after all! ~

It's your right - however if your family and/or Drs can convince a Judge that you are mentally unable to make that decision - they can force treatment on you -- Rare, but it happens.

I'm so very sorry you are in this position. TRUST me I know what you are going thru and I know you feel horrible while they try to get your med "just right" . And then you get just plain tired of putting up with all the BS and different opinions from so many Drs. Drs are not always right - How many times have we heard about people stopping treaments and living many years. I would sure cont. the blood thinners though, if nothing else. It would be horrible to have a stroke.

Hang in there, kiddo.

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Mary

Julie Thats the thing I have been sick since Stefan was born I know some people here were around when I Was pregnant I was very very ill when pregnant with him on bedrest at 9 weeks, nephrostomy tube and changing it every month, in hospital 21 times, pre-term labor, viscious infections and having him early but healthy baby thankfully.

Stefan has known nothing but Mommy being sick I spend close to 200 days in patient every year in the hospital except last year I managed only 90 days, practically everyweek I have at least one Dr's appointment. Next week I have appointments with every Doctor I see unless they fire me today. The dissapointment when Daddy gets him from his afterschool program and they go to the hospital and not home you can see it or when we cant go to something at the school because Mommy doesnt feel well it hurts to see him so dssapointed and he wont go unless both Mommy and Daddy can go. I have kidney disease which is what I originally got my SSDI on and then they finally found the lupus, RA and Fibro after probably suffering from at least the lupus since childhood, plus I have a immune system deficiency and really cant be out in crowded public places because I get sick so easily. I have adapted my life to that of a recluse in a lot of ways I get out to the grocery store I know when the slow times are, we'll go out to eat when its not busy and we have adjusted our lives that way. I think Stefan has suffered enough with going here and there to Doctors, seeing me hooked up to crud at the hospital or sending him to Daycare when I go to the hospital or Doctors visits and he needs a life other than that let him have a happy mommy that doesnt care about all the medications and doctors visits and spends more quality time with him who knows I could go years without a problem and I know the risks and I just have had enough.

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~ Christine ~
Grammie to Trinity Lorayne Jean Keens Born June 9, 2011 Loving my awesome guitar picking 100% Country Boy boyfriend Kenny !
RIP Daddy~ 01/24/1930-06/01/2007 I miss you !
Dont Think you Can .. know you can ~ Jeff Hardy

Christine,
I can understand how you feel. And I do think it should be your right to say ENOUGH.
But if Stefen EVER finds out that you gave up to spend a little time with him and maybe could have lived longer if you kept up with your treatments, etc., he will be devastated! If you should have a stroke and have to be waited on hand and foot or go to a nursing home, that could be worse on everyone. You have so much to consider. All you can do is pray that God will give you the answer to your dilema. I will pray too and ask him to help you and be with you whatever your future holds.

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Square dancing is friendship set to music!

I feel for your plight and honestly, I might make the same decision if it was me on the other end of the stick. I think your son will understand your decision. I would write him a letter (to read at a later age) and video yourself as well. Leave him with YOUR explanation and let him know your feelings and thoughts.

I wish you luck with your decision and standing your ground. I think most people (especially doctors), believe that most people would do ANYTHING to stay alive. When in truth, that is not true. It is their JOB to try to save you and they will do anything to make that happen.

You are in my thoughts

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Proud to say I haven't shopped at a Wal-Mart since Sept 2003

That's a decision you only YOU should be able to make. You said you have weighed all the pros and cons. What will the outcome be for you if you do decide to quit taking all the meds and end medical treatment?

"The medical providers what to make sure that you have all the facts." PLEASE do not fool yourself into thinking that...
They are supposed to make sure you have all the facts however again, and I see this EVERY day, their own beliefs and biases get in the way.

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GO TONY!!!!!!!!!!! # 20!!!

My words exactly. I have had my share of medical problems (including 2 pulmonary embolisms after a surgery 2 years ago) and am hanging in there for my kids. I really owe my recovery to them. I can't even imagine just giving up - I have fought this fight just for them. I hope that someday they understand and realize how strong their mom was for them. You need to hang in there for Stefan.

I am going to keep up with all the other stuff I am doing for my lupus,RA, Fibro, kidney disease et al but I just cant go back on blood thinners unless they can convince me there is a better way to do this today at 4 pm.

I do live each day for Stefan but as I told someone earlier I am not the same happy person I used to be I have found myself with a nasty attitude lately and almost lost some great friends and I found when I have to do so much for me I am not able to be the helpful person I usually am and probably expected to be. I miss me and before you all say I am on antidepressants have been for years and changed about 8 weeks ago.

I am going to go jump in the shower and get some of this spring cleaning stuff off me before we go. Be back on later

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~ Christine ~
Grammie to Trinity Lorayne Jean Keens Born June 9, 2011 Loving my awesome guitar picking 100% Country Boy boyfriend Kenny !
RIP Daddy~ 01/24/1930-06/01/2007 I miss you !
Dont Think you Can .. know you can ~ Jeff Hardy

Ok, you're willing to do everything but take the Coumadin?
You're going to keep up w/ all of your other therapies/treatment, just not this one?

Why? I'm confused now--I thought you were going to stop all the treatment/therapy.

How is not treating this one thing going to make you a happier person? How will not treating this affect your other diseases/conditions?
You say you're on an anti-depressant--are you attending any sort of therapy to augment the anti-depressants? If not, might want to consider it.

I'm not saying you don't have the right to choose, what I'm saying is I don't understand your reasoning on not treating the one illness/condition/disease, but continuing treatment for the others.

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Mental that one, I'm telling you. ---Ron Weasley, "Harry Potter and the Chamber of Secrets"

Treating someone with multiple problems is hard, especially on the patient. We are all quick to get the medical Dr to fix the physical stuff, but forget about our emotional health. Knowing every nook and cranny in a Drs office because you are there so much is nothing to brag about. Are you feeding your emotional well being? Do you have an outlet for you to just be you? Not anyones mommy or a person with an ongoing illness? It is your life and you get to decide how to medically treat yourself or not treat yourself.

Well interesting meeting to say the least there was someone in attendance via conference call that was my best ally of them all my former Primary Care Doctor who moved to Richmond recently, My Current Primary Care Doctor who was in essence her partner called her and she and him talked at length about me and we have a plan now that only one person isn't happy with and that is my Rheumatologist, everyone else agrees to try this instead and then make a decision if there is a problem.

I am going to see a Interventional Radiologist to get a consultation for a IVC filter. Its a filter that is inserted through the groin and up to my vena cava that can catch any blood clots I may get and essentially prevent the problem of any Pulmonary Embolisms etc. I think it would be a great thing to do. I am to continue the same meds I am on now and start nothing else.

For those asking yes I have a therapist I have had the same one for over 9 years now, she has a therapy dog also that I love going to see, so I have my outlet there. My other outlet is usally my crafts and donating them to the local hospital, Mariah Center or Bethany House for needy mothers, but the bad health has cut that down, but I am going to try toget back into it and maybe into craft shows again.

So now the wait to see the Interventional Radiologist starts. I am thankful my PCP called my former PCP and she put her two cents worth in I think this maybe the thing for me. If i didnt have to drive two hours to see her I would go to her again I absolutely love her, not to say my current one is bad he's not he was my PCP before she joined the Practice and the other 9 Doctors in the practice all know me really well.

I feel much better with this decision because it could be the best thing for me and others like me this I am willing to do.

ETA; I corrected from Cardiologist to Interventional Radiologist after I looked up the Dr they referred me to I saw they were a Interventional Radiologist not Cardiologist and they are well respected in the area based on Washingtonian Magazine so Monday morning call for Appointment and see what transpires

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~ Christine ~
Grammie to Trinity Lorayne Jean Keens Born June 9, 2011 Loving my awesome guitar picking 100% Country Boy boyfriend Kenny !
RIP Daddy~ 01/24/1930-06/01/2007 I miss you !
Dont Think you Can .. know you can ~ Jeff Hardy

What if you didn't have any health insurance?I bet the doctors could give a rats ass then whether you decided to have treatment or not.If you didn't have health insurance to pay for it all they wouldn't even care.They just want the money.I would not want to go through what you have been going through and don't let anyone put guilt trips on you for deciding not to put yourself through anymore torment.
Thats one of the many reasons why I wouldn't even go to the doctors if I had insurance.I would probably end up with so many diagnosis for this and that ,that it would make me go insane trying to deal with it all.
Right now I'm dealing with painful Sciatica .I can't do too much of anything without being in a lot of pain.afterwards.I can't take any kind of pain pills because they irritate my bladder to the point where its unbearable.So I just deal with the pain.I know that if I did have insurance that I would be put through testing for this ,testing fot that,and they would want to put me on all kinds of drugs that would irritate my bladder or probably want to try some kind of surgery on my spine that could possibly make things worse,and then they'd want to do another surgery to fix that surgery ,and put me on this med to fix what they messed me up with while being on the other med.By the time doctors get done with you ,you have more problems than what you had to begin with.I just could not deal with all that.Its your life and you have the right to enjoy whats left of it without being miserable.

I'm glad you found an alternative that can help.Hope everything goes good for you .

Wow! You must have had some really bad experiences with Drs. You seem extremely bitter and angry.
I have never, never, ever, known any Drs. like that.

OP, I'm glad that you were able to have a good meeting and come up w/ a plan.

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Mental that one, I'm telling you. ---Ron Weasley, "Harry Potter and the Chamber of Secrets"

Marilyn ~Never said I was stopping all treatment just refusing to start this one again. If you saw my list of medications and my list of medical problems which are on a "Cheat Sheet" of sorts that stays in my purse, in my glove compartment and in a binder that I take to the ER with me you would be shocked to see how long of a list it is, it takes up a full page of two columns each for my medical issues alone and you would say a few swear words like I have heard nurses say when checking me in at Triage who don't know me.DH jokes it would be easier to list what medical problems I don't have and trust me on some of these I have had 2nd and 3rd opinions just to be sure I have the medical problems.

How it makes me happier? Because I wont have to constantly watch the clock if I want to go out and be sure I take my coumadin at 8 pm every night, that I wont have to be extra careful when I am chopping up food for fear I might cut myself and land back in the er because it wont stop bleeding (trust me I cut myself a lot when cooking), watching to be sure I dont bump something and get those huge bruises that can become a serious issue. Because I wont have to give up my favorite foods leafy green veggies because they throw off the coumaidn levels big-time and if there is one thing I love its my greens, my brussel sprouts, spinach, broccoli, cauliflower, cabbage, etc and thats one healthy thing I cant give up. Also because I wont have to go to the Doctor every week for labwork, sometimes twice a week if my levels are off, keeping trakc of what does I am supposed to take each day etc. The stress on finances because our new insurance doesnt include the labwork under the co-pay and medicare wont pick up the whole bill leaving me with a co-pay I cant rightly afford now but I cant qualify for help in spite of DH being out on disability they dont care that he nets $160 a week after health insurance is taken out its the gross they go by.

There is a update above this post somewhere about seeing a cardiologist for a IVC Patch.

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~ Christine ~
Grammie to Trinity Lorayne Jean Keens Born June 9, 2011 Loving my awesome guitar picking 100% Country Boy boyfriend Kenny !
RIP Daddy~ 01/24/1930-06/01/2007 I miss you !
Dont Think you Can .. know you can ~ Jeff Hardy

I understand that with all of your other medical problems this may be very different for you, but my DH is on coumadin and still eats his green. leafy, veggies. The doctor adjusts his coumadin to allow this.
After his levels are correct, he only has to be checked once a month.
I think that the letter and/or video for Stefen is a great idea, no matter what you do.
I wish we lived closer, as I would be happy to help you in any way I could.
I will continue to pray for you and I wish you the best in all you do!
What kind of crafts do you do?

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Square dancing is friendship set to music!

I just wanted to let you know that I had an IVC filer installed after I had the 2 PEs (see earlier post). I highly reccommend it, as it give me peace of mind that if I ever have another clot, it would be stopped in advance of causing any problems.

Many people do not wish to take Coumadin. It is basically rat poison. It poisons your body. It is not unreasonable to not want the treatment. However there are risks to be considered. With coumadin you have to make weekly visits to have blood drawn to check your bleeding time. There are also many foods you can not eat while taking Coumadin as it effects how the drug works. However not taking it could definately result in a stroke leaving you incapacitated or a heart attack or a pulmonary embolism. I have worked in the medical field for 16 years. I believe that most doctors respect their patients' rights to refuse treatment. However they must make sure for legal reasons that you are fully informed of the consequences of refusing this treatment. Afterall many doctors get sued and unfortunately this is now how it has become. I have a patient right now who expressed she wishes to die, but she has had some strokes recently and has altered mental status leaving her unable to make this decision for herself anymore. It is good that you have a living will in place. This will defiantely benefit you. As for your son, that has to make the decision very difficult for you. No one can understand how it is for you. You could do very well without the coumadin. Have you considered replacing the coumadin with an aspirin regimen? This would at least offer some help with the blood clotting problem. I hope your appointment went well. Please let us know.

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I should have mentioned that I never went on Coumadin after the pulmonary embolisms. I had another condition that would have made a blood thinner dangerous. So not everybody has to take it.

JM19~ When I was coumadin after the PE I still ate them, technically I am not supposed to eat them because of my kidney problem I dont metabolize calcium oxalates which they are full of and therefore I am a kidney stone factory. I remember adjusting up and down for them I kind of knew when I needed to adjust. I crochet (mainly baby), cross-stitch, plastic canvas and other crafty things, I just found a box of some plastic canvas wreathes I did and popped them over to the neighbors for the KOC auction tonight and she is making them featured items.

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~ Christine ~
Grammie to Trinity Lorayne Jean Keens Born June 9, 2011 Loving my awesome guitar picking 100% Country Boy boyfriend Kenny !
RIP Daddy~ 01/24/1930-06/01/2007 I miss you !
Dont Think you Can .. know you can ~ Jeff Hardy

I would do anything in my power to stay with my children but I'm not in your shoes. God bless.

Coumadin (Warfarin) is *used* in rat poison - it is not a poison itself. I do not have to adjust my diet, I have my protine level checked once a month - it is only checked more frequently if my level has changed drastically and my med level has to be adjusted a great deal. I would not want anyone reading this thread to come away with the idea that Coumadin is a horrible drug that they should avoid at all costs. Coumadin is a life saving drug. I was *very* happy to begin taking Coumadin once aspirin and Plavix were no longer enough to keep the TIA's at bay. I've had one stroke and that was one more than I would wish on anyone :-)

Christine, I'm glad that you have a new plan. Just wanted to add my two cents. My Mother started battling cancer back when I was 5 years old. She was also a single mom back when there wasn't many, and worked full time. Yes , most of my memories of my childhood included her being at work , or visiting her in the hospital, but I loved her so much. She genuinely loved my sister and I. I remember eavesdropping on her talking to my aunt, and she said that all she wanted was to live long enough to see us both graduate high school. I remember thinking that was silly, a child never really accepts that their parent is going to actually die. I know it sounds crazy, but with as sick as she was, I never believed she would really die. She even flew out to MD Anderson Cancer Center in Houston the last year for every 6 weeks recieving experimental chemo. We took turns going with her. She died when I was 16. That was 24 years ago, and I still miss her. But I will never forget how strong she was, and how long she fought, for us. She had to be very lonely, and terrified. It upsets me to this day to think about it. But it has made me a better person I guess. I cherish my children and thank God for every year that they get older and I am here to see it. She was only 42, and I'm 40 and healthy. Just something to think about it.

Hey Christine,
Just wanted to let you know I am glad you came up with a compromise that makes you happy!!
My thoughts are with you!!

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GO TONY!!!!!!!!!!! # 20!!!

Just wanted to add my two cents to your post......I can see both sides of this, but, I think overall most doctors truly want to help, and I would hope you would go to the doctor and discuss options with him/her. You can always refuse a test, right?? But, I strongly believe prevention is the best cure.

As far as doctors being out only for the money, I have luckily not encountered many of those. I will say, this one doctor a family member had.....OMG, we had to give him the boot. He kept talking about bringing in Hospice. Um, HELLO.....WTH??? There is no need for Hospice right now. He had this person convinced it was time for Hospice, and they were ready to lay down and die. Wooh, that was a tough time, but, we were their advocate and told this doctor how we felt and found a new doctor, thankfully. OTOH, DS has a WONDERFUL doctor who is very considerate of money, and we have very good insurance. Also, while we were there for a visit, there were several patients with no insurance (small office, you can hear EVERYTHING) and he still saw them, and I'm willing to bet they got the same wonderful care that we did.

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Doing the right thing isn't always the same as doing the easy thing.