Author Topic: Time to say good by  (Read 20696 times)


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Re: Time to say good by
« Reply #30 on: June 07, 2010, 02:20:43 PM »
God Bless you. May His face shine upon you and give you peace.
I miss the good old days. Things were more like they used to be back then.

Sjogrens, Lupus, Fibro, GERD


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Re: Time to say good by
« Reply #31 on: June 07, 2010, 05:30:37 PM »
Hey Navy Dad,
After reading your post, it sounded as if you have given up.  You have every right to feel defeated, but after a brief respite, you know you have to get back up and start fighting again. 

You can't give up.  And I know that I got my diagnosis by researching and finding out possibilities on my own.  You may have to diagnose yourself.  It shouldn't be that way, but it might be the reality.

And then, you might get an appt with a great doc who will run the right tests and get your diagnosis and treatment. 

This is just a thought but, any chance you had any exposure to toxic chemicals?  I just wondered  and sorry if you've already considered this.

Go ahead and take a little break, but please come back and let us know how you are doing.  YOU ARE NOT DEFEATED.....just taking a break.

I'll be looking for your return.  Take care and may God give you the diagnosis and cure you are seeking.   Tinker


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Re: Time to say good by
« Reply #32 on: June 08, 2010, 01:01:48 PM »
I got a call today from the neuro,,, they have all the results back from Mayo,, we are to meet with him on thursday,,, the Nurse said,, its what he thought it was,, but would not tell me over the phone,, whatever the heck that means,,, I hate waiting now that the damage is done,, I suspect a shouting match on thursday,, I;ll let you know what comes of it


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Re: Time to say good by
« Reply #33 on: June 08, 2010, 01:07:40 PM »
Good luck - will be thinking of you.



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Re: Time to say good by
« Reply #34 on: June 08, 2010, 01:54:25 PM »
Dear Buddy:

OK you get to shoot the neuro AND the nurse!  Wait, let ME do it for you.

OK, Relax Sjogies, this is just a joke, it's only a joke.  HONEST

But the idea of saying "it's what he thought it was" without saying WHAT he thought it was, is worthy of something worse than shooting.

You've gone this far, and you can make it further, Buddy.   But honestly, the insensitivity of some medical personnel is overwhelming.

You can  keep going fueled by exasperation at the idiocy around you.

Keep us posted.

And don't you DARE LEAVE.


« Last Edit: June 08, 2010, 02:15:38 PM by Carolina »
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Re: Time to say good by
« Reply #35 on: June 08, 2010, 01:59:34 PM »
Thinking of you navydad.  I know we are all on pins and needles too waiting to find out if you finally get some answers.  At least when you know what is wrong, you know what you are battling.  AND, if it's what he thought it was, why did you have to go to Mayo to find out??? GRRR @ health care.  Why couldn't the nurse just say, he needed to meet with you and leave it at that?  Hang in there.

Prairie Gal

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Re: Time to say good by
« Reply #36 on: June 08, 2010, 03:05:38 PM »
I've been told by a retired physician friend that nurses in today's world aren't allowed to give patients the outcome of their tests.  She didn't say why.  Fear of being sued if the nurse left the patient with the wrong impression, maybe?   Doctors have malpractice insurance; I don't know if nurses do.

Prairie gal


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Re: Time to say good by
« Reply #37 on: June 09, 2010, 04:53:08 AM »
I would have demanded to talk to the doc immed...please let us know what happens k? good luck
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements


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Re: Time to say good by
« Reply #38 on: June 09, 2010, 06:24:12 AM »

Ditto Carolina's message...and all the rest who ask you not to leave.  We care so much about you and what happens to you.

Please keep us posted on what happens Thursday, you will constantly be in prayers. 

As for nurses not being able to give info, I completely understand, but you don't say...'it's what he thought'...either if you cannot elaborate.  Some people just have not common sense or compassion...or maybe competent training.   Think it requires an aside to the doc, when you see him, as to the stress it has added.   JUST WHAT WE DON'T NEED, Sjogren dx or not!!!!

Gentle wishes of wellness dear friend.
mary ann


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Re: Time to say good by
« Reply #39 on: June 09, 2010, 06:41:28 AM »
You've totally got to put the silly woman to rights. What an AWFUL thing to say to a patient. Incredibly unprofessional.
She should be raked over the coals for being so irresponsible. Her boss should ream her out. Unbelievably insensitive.

Praying that "what he thought" you have is treatable and you finally get some real help.


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Re: Time to say good by
« Reply #40 on: June 09, 2010, 07:18:27 AM »
No matter what he says today, please don't go.  You've got a wealth of information and we need your wisdom.  We also like you hanging around.  Please let us know what he says, ok?


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Re: Time to say good by
« Reply #41 on: June 09, 2010, 09:31:36 PM »
Navy Dad - do what you got to do, but don't forget, if you just need a place to say hello, to say, darn, it hurts, or find some friends, we're here.

There are lots of folks here who have a range of problems.

Take care of yourself, and best thoughts
Primary Sjogrens, dx June 2009, Immunoglobulin deficiency, axial spondylosis arthritis, IBS, autonomic neuropathy
Omeprazone DR 40 mg, mobic 15 mg, Plaquenil, LDN, B1, B6, B12, D, fludrocortisone, gralise, various inhalers


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Re: Time to say good by
« Reply #42 on: June 09, 2010, 11:03:25 PM »
   Even though I barely use this site, the times that I do I have always looked forward to reading your posts. You have inspired me in ways that others have not been able to do so because i too have had my world turned upside down by disease and pain. Just like you I have longed to be the person i was once and do the things i used to be able to do.  Please don't give up and above all keep the faith. You will be missed!!!!!



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Re: Time to say good by
« Reply #43 on: June 10, 2010, 08:09:40 AM »
navydad, Well, It is Thursday now and I, for one, am waiting anxiously to find out what "he thought it was". It occurs to me that if he thought it was something it would have been nice if he had let you in on it.

Nurses haven't been allowed to give out medical test results for many, many years. She was fine when she said she wasn't allowed to give out the info, but when she ads the "thought it was" clause she just increased the misery index. Makes you wonder if the doctor told her to say that. Some doctors can't stand to be "one upped" by a referring clinic or physician. They think it makes them look incompetent. The truth is that any doctor worth his salt should be able to admit when he doesn't know and refer a patient to someone who may be able to shed light on a complicated case.

And yes, nurses should be carrying liability insurance. I have carried it since I got out of training. My thought is that anytime a profession is known to get sued a liability insurance policy is in order. I never had to use it, thank goodness.

Soooo, here we all sit and wait for navydad to come and tell us about his appointment yesterday. Irish ;D


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Re: Time to say good by
« Reply #44 on: June 10, 2010, 08:59:02 AM »
I pray navydad will be given some answers and I want them to be positive for him and his family.