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Sjogrens Topics => Living With Sjogren's => Topic started by: navydad on June 05, 2010, 06:59:16 AM

Title: Time to say good by
Post by: navydad on June 05, 2010, 06:59:16 AM
well good people, its become apparent that my medical doctors dont have a clue to what I have,, I have watched my muscle deteriote to the point where I can barely walk,, I am in constant pain and my arms and stomach just refuse to wrok anymore,, I guess i dont have SS, but some other kind of disease,, Pain meds do nothing to stop the pain
  I have come to love all of you very much and I have appreciated all the good advice you all have given me over the past couple of years,, but I need to take some time to either force the issue with my doctors or just keep wilting away till its out of myhands,, So with that I just wanted to say see ya later,, if I ever find out anything i;l beback to let you know what it is,, but at the rate I am going,, i am not hoping for anything in the way of miracles,, God Bless you all,, I hope we all find a cure to what is slowly destroying us,,
Title: Re: Time to say good by
Post by: Babs659 on June 05, 2010, 07:28:06 AM
I'll miss you :'(

Good luck
Title: Re: Time to say good by
Post by: Sweetgirl on June 05, 2010, 07:40:32 AM
Dear Navydad,

Sometimes it is just all too much.  We understand.

I hope you find some help and answers sooner than later.

Good luck and best wishes to you.

Kristine
Title: Re: Time to say good by
Post by: Ohiocat on June 05, 2010, 07:53:59 AM
hang in there  navydad
Title: Re: Time to say good by
Post by: Scottietottie on June 05, 2010, 08:09:10 AM
Hi Navydad  :)

I'll miss you too. Please keep in touch intermittently and let us know how you're doing. I think a lot of people need a break from the forum after they've used it for a while, watching the same questions come up - and of course, the same answers - or not as the case may be.

Good luck with the fight!

Take care - Scottie  :)
Title: Re: Time to say good by
Post by: Livvie2 on June 05, 2010, 08:12:03 AM
Navydad,

If you want to say "hello" again at some future time, please do.  It sounds like with the confusion of your diagnosis, that you need some space to think about things.

I have given myself permission to come and go on this site.  I'm not a moderator so I don't have any obligations. I love that this group exists and goes on posting even if I am too tired or not in the right mind set to join in by replying.

I don't have a "formal diagnosis" of Sjogren's either. I am negative on those two antibodies and I don't want to go for the lip biopsy. But what else could it be?  For my situation,  the puzzle pieces fall into place for Sjogren's.

Navydad, do your best to keep support around you.  It is hard enough going through what you're going through. Sometimes I tell myself if I have to have these physical issues (which I didn't choose), then I'll be extra nice to myself with small things which comfort or ease the symptoms. 

Best wishes, Navydad.   

Livvie2
Title: Re: Time to say good by
Post by: lori on June 05, 2010, 10:19:49 AM
navydad- im gonna keep praying for you.

God bless

lori
Title: Re: Time to say good by
Post by: kellyptyler on June 05, 2010, 10:25:11 AM
I'll keep you in my prayers..hang in there.
Title: Re: Time to say good by
Post by: YYC_ Mommy on June 05, 2010, 10:32:02 AM
Well, I am going to miss you! I hope that things really do work out for you and that one of the doctors from Mayo can eventually help you. Best of luck and I do hope that we hear back from you that someone has been able to help you.

You are in my thoughts and prayers!
Title: Re: Time to say good by
Post by: Cricket on June 05, 2010, 11:36:38 AM
Navydad

Hope you will push this with mayo and I hope you get some answers.  Hang in there, even though your body is in bad shape I get the feeling you have a very strong will.  I have always enjoyed your posts and will miss them.

Prayers and gentle hugs to you
Cricket
Title: Re: Time to say good by
Post by: Patze on June 05, 2010, 12:03:47 PM
Aw Navydad, I'm so sorry that you're leaving us, and I hope that you'll be able to keep us updated my friend.

Take care of yourself and I sure hope that your doctors figure it out soon -

Patze
Title: Re: Time to say good by
Post by: Blue Kat on June 05, 2010, 12:58:57 PM
Take care, Navydad, and let us know what your doctors do find out, if anything.
Title: Re: Time to say good by
Post by: Sheltiemom on June 05, 2010, 02:22:30 PM
Navydad -

Have only been at this site for about four months, but always was very interested in your posts.  Just a thought:  When you were at Mayo, were you tested in its Autonomic Lab for autonomic nervous system failure in any form, and if you so - were the findings normal or not?  I don't recall what you said your brain MRI (with contrast, or why bother) and other neurologic studies showed in the way of abnormalities, if any.  But the autonomic nervous system can sometimes be overlooked by neuros and can cause a lot of problems when it goes abnormal.

Very best wishes to you, and please don't give up the ship.

Sheltiemom
Title: Re: Time to say good by
Post by: Dolly Dimples on June 05, 2010, 03:05:44 PM
  Navy Dad,  So sorry you feel you had to go, but do understand.
                          You will be much missed but always in our minds and prayer's.

                         It is most disappointing to have paid all that money,
                             and did all that travelling, for you to be left high and dry like this.

                         May you get some answers eventually,
                                       and may you find some comfort in the fact that you fought this battle like a trooper, and may still win the battle yet.
                                                    Bless you lad  , Dolly x
Title: Re: Time to say good by
Post by: mink on June 05, 2010, 07:29:13 PM
Navydad
   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!!!!!

 
 [
Title: Re: Time to say good by
Post by: Joy Cox on June 05, 2010, 07:48:07 PM
Goodbye, You'll certainly will be missed!  Best Wishes, Joy
Title: Re: Time to say good by
Post by: Shashi11962 on June 05, 2010, 08:29:50 PM
Navydad, I'll be praying that you find the answers that you need. But come back when you can. I don't have SJS either (according to my lip biopsy), but I do have a lot of the same symptoms as these great folks. I've learned a lot from them about how to deal with the symptoms and how to cope with whatever it is that I do have. I'm sure they don't mind those of us in limbo hanging out and getting support from them.

Good luck and big hugs,

Lisa
Title: Re: Time to say good by
Post by: season on June 05, 2010, 09:49:19 PM
you will be missed. Please visit when you can. May you find the answers that you are looking for.
Title: Re: Time to say good by
Post by: genko_b on June 05, 2010, 10:09:15 PM
Take care. I hope you find some relief from your pain. Please do stop by from time to time to check in with us, if you are able.

Genko
Title: Re: Time to say good by
Post by: irish on June 05, 2010, 10:15:06 PM
navydad, Shucks, I hate to see you go and will miss reading your posts. I think, like all of us here on the post, we feel we have a vested interest in you as we have come often to see how you are doing.

Please take care of yourself my friend and know that I will be praying for your body and spirit. May they both find peace and comfort in your qwest for better health. Irish ;D

P.S. Don't you forget to come back and let us know what's up!!!!
Title: Re: Time to say good by
Post by: susanep on June 06, 2010, 12:56:44 AM
As others have said will miss you, and pray for you, and please do keep in touch.

susanep
Title: Re: Time to say good by
Post by: gurs on June 06, 2010, 05:18:51 AM
Navydad,

I know your tired of me saying this, but its only because I care...did they ever bother testing or mention Porphyria? you sure have alot of
symptoms of this? I guess the only way to tell for sure is via DNA testing..you can research this on-line..alot of doctors dont even bother checking this out.

The national institute of rare diseases might be able to help   http://rarediseases.info.nih.gov/

Dont give up sweetie!!

This autoimmune stuff is just a nightmare...funny how so many of us have severe, severe symptoms, especially neurologicial and alot of
these tests dont even show anything? even if they do, not much in the form of treatment either....

Title: Re: Time to say good by
Post by: Carolina on June 06, 2010, 06:23:59 AM
Dearest Navydad:

Again I must say, don't GO!

I've been thinking about you.

Having this terrible set of physical problems, with no diagnosis and no treatment is horrific.

And only you can decide how to proceed, that's clear.

I'm only beginning to have a tiny part of what you are suffering, so I cannot begin to speak to your suffering.

I am beginning to realize, however, having a firm diagnosis isn't going to make much difference.  With the current level of medical knowledge, my condition can't be cured or even slowed, never mind stopped.   All I can hope for is some relief from the symptoms.

I don't know how I"ll feel about all of this down the road.  I hoped it would be a slow progression, but I can tell that already my hands and arms are becoming involved.

I do know that I want to make decisions about  my future, myself.   And I will.

I know most of all, in my heart of hearts, that sharing with others, reaching out to others and letting them comfort me, is the core of my life and well being.

And so, Navydad, I hope fervently that you will continue to share with me and others.  Stay in touch.   You are NOT a diagnosis or a disease or a treatment.  You are a man, unique and interesting, and I hope you will continue to post here, and share with me and all of us.

Keep us posted.

Kisses

Carolina
Title: Re: Time to say good by
Post by: jstroble on June 06, 2010, 06:57:26 AM
Navy Dad

I am so sorry you haven't found the answers you deserve.

You are and will be in my thoughts. 

Please let everyone know how you are doing. 

Joyce
Title: Re: Time to say good by
Post by: ruby52 on June 06, 2010, 10:31:45 AM
So sorry you still have no answers and no relief.Come back just for comfort if you need to.A lot of us on here care about how your doing and wish you well.

                                                  Ruby
Title: Re: Time to say good by
Post by: jaygee on June 06, 2010, 02:56:02 PM
I'm so sorry you don't have answers.  We all care about you, here, so please do come back from time to time and let us know how you're doing.   xx
Title: Re: Time to say good by
Post by: kwolfsheimer on June 06, 2010, 03:38:59 PM
Navy Dad,

You know, whether you are diagnosed with Sjogren's or other-- or never get the diagnosis that you deserve, you know that we are here for you. We know how you feel and you don't need anything "official" to be a part of us.

I know what you mean though. It would be good to know what is going on with you-- more so that you can get some drugs or pain relief.  Check with us, OK???

Kelly
Title: Re: Time to say good by
Post by: Bucky on June 06, 2010, 07:46:46 PM
Navydad,

Wishing you all the best . . . keep fighting . . . you have to be your own health advocate, no one else will be.  Stop in any time - we'll keep your drinking cup by the water cooler and your seat open in our circle of friends.  =)

Keep in touch - take care,
Bucky
Title: Re: Time to say good by
Post by: beverley on June 07, 2010, 03:10:05 AM
Navydad,

I am so sad that you are not going to be posting regularly any more.  Your dry sense of humour has lifted me out of many dark moments and I always feel that I shouldn't complain about anything when I hear what you suffer.

Good luck in your search for answers, but don't forget us.  We're not fussy about whether you have SJS or not, so please come back and let us know how you are from time to time.

I have been away from the forum for six months and a year but knowing it is here is a great comfort and coming back is easy.

I will miss you very much.

Beverley
Title: Re: Time to say good by
Post by: Nans on June 07, 2010, 05:33:10 AM
Dear Navydad,

So sorry to hear you will be leaving us.  I hope you will be led to the doctor who will correctly diagnose you soon - hang in there!

Please stop by from time-to-time to let us know how you are doing.

God bless,

Nancy
Title: Re: Time to say good by
Post by: bloodless on June 07, 2010, 02:20:43 PM
God Bless you. May His face shine upon you and give you peace.
Title: Re: Time to say good by
Post by: Tinker 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
Title: Re: Time to say good by
Post by: navydad 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
Title: Re: Time to say good by
Post by: beverley on June 08, 2010, 01:07:40 PM
Good luck - will be thinking of you.

Beverley
Title: Re: Time to say good by
Post by: Carolina 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.

Kisses

Carolina
Title: Re: Time to say good by
Post by: Reanne 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.
Title: Re: Time to say good by
Post by: Prairie Gal 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
Title: Re: Time to say good by
Post by: gurs 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
Title: Re: Time to say good by
Post by: mac on June 09, 2010, 06:24:12 AM
Navydad,

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
Title: Re: Time to say good by
Post by: Suzie 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.
Title: Re: Time to say good by
Post by: syng4hym 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?
Title: Re: Time to say good by
Post by: warmwaters 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
Title: Re: Time to say good by
Post by: mink on June 09, 2010, 11:03:25 PM
Navydad
   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!!!!!

 
 
Title: Re: Time to say good by
Post by: irish 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
Title: Re: Time to say good by
Post by: season 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.
Title: Re: Time to say good by
Post by: lindaneall on June 10, 2010, 09:19:02 AM
PLEASE let us know what you find out. Also, SHAME on that uncaring, unprofessional nurse!!!
Title: Re: Time to say good by
Post by: Bernice on June 11, 2010, 10:38:47 AM
Navydad

ya know I've been away for a bit so just reading this post. Well I must say I am truely sadden to read it! Look Navydad you are going through a WHOLE lot, but the key words here are GOING THROUGH, so just don't give up the fight.

You are fighter, yeah fighters sometimes get knocked down, BUT fighers ALWAYS get back up and fight again! Remeber that!

Who has not wanted to give up at times? It's o.k to feel this way at times, THEN you take in that next breath of air, clear your head and fight!

Peace & Be Blessed!
Bernice
Title: Re: Time to say good by
Post by: kellyptyler on June 11, 2010, 07:23:03 PM
Sure hope NavyDad lets us know how his apt. went yesterday.
Title: Re: Time to say good by
Post by: Catilee2 on June 11, 2010, 07:47:01 PM
Navydad,
     like the others you are in my prayers. Your courage has been inspiring. please let us know how things have turned out. Not knowing what is causing the problem is maddening. last year before they diagnosed my second condition, my GP did not take my complaints seriously. It makes it so tough.  I empathize with you. I had all the local Drs. scratching their heads until I was refer to Brighams and Women's Hosp. in Boston.  Good news or not so hot news, you will be prayed for!!!
Catilee2
Title: Re: Time to say good by
Post by: navydad on June 12, 2010, 11:15:25 AM
I have nothing new to report,, the neuro actulyy only went through a few pages of the mayo report,, and sat ther for 20 minutes praising mayo,, all the while I;m telling him,, look my legs and arms hurt,,, I even went so far as to say,, I;mnot asking,, i;m begging for help,,, all i got was a suggestion that i try a new pain med,, today I am barely walking,, horrible sinus infection that the MRI from Mayo said was enlarging the bone in teh face,, I called the ENT on thursday,, I explained tot he nurse what it said,, she said it sounded serious,, I told her I can fax it to them,, she told me to do that,, I did and never heard a wrokd back from them,,, I have given up,, I;lm just to beat up and hurt to bad to continue on thiss road,, I have been this bad,, I am barely walking,, been up since 1am this morning,, I cant sleep,, legs and arms hurt to bad,, and my face is so sore,, and of course the mucos or lack of it has me gagging all night and day,, sorry everyone,, I had thought this idiot had something to tell me,, but did say we need to keep the rheummy involved,, what teh heck for,, mayo says I dnthave SS,, you people say I do,, who thehell do I believe anymore,,, I have told my wife,, I will not live a life like this,, I shouldnt have too,, I should not have to live like a cripple ,, at least with being a cripple,, you might not have the pain invilved,, but I just cant handle the sensory stuff,, when I talked to the neuro about it,, my sister who was tehre asked how bad Iw as,, he said hes in bad shape,, then went back to talk about his trips to the mothership as he referred to Mayo,, I am not seeing anymore doctors,, I refuse to see these idiots who do not take us seriously,, I am afraid I might just snap next time,,,
Title: Re: Time to say good by
Post by: shevonne on June 12, 2010, 11:25:27 AM
I know it is hard for you and Im so sorry!  Please dont give up!  Im praying for you and hoping someone finds the problem!  I know its easier said than done but you got to keep fighting!
Title: Re: Time to say good by
Post by: Jack on June 12, 2010, 02:44:29 PM
I'm really so sorry this is happening to you Navydad.  I think it's just awful that you have to suffer so much without the help you need and deserve.  Last night my neuropathy was so bad I felt like going to the ER and BEGGING for help but I knew that would be useless.  What's the answer?  I don't know.  All I know is that I won't give up seeking the help I need and deserve and I hope you don't either.  I will exhaust every avenue I have to find quality health care. I hope you will too.  Please stay with this board, you have friends here even if you might not have SJS. 
Title: Re: Time to say good by
Post by: Cricket on June 12, 2010, 09:25:28 PM
Navydad -

           I am so sorry you have to be torchored like this.  Please don't give up and don't leave this group, we are all on your side. Will keep you in my prayers.

Cricket
Title: Re: Time to say good by
Post by: irish on June 13, 2010, 12:09:35 AM
navydad, I have forgotten---have you ever been to a pain clinic where all they deal with is the control of pain. There are many new methods of controlling pain and the pain clinics are the place to go. The regular doctors don't go outside the box to treat pain as that is not their "specialty. I would search this out. You may not have a definitive diagnosis but the bottom lin is that you get some relief from pain.

Everyones pain receptors work differently and we all have different pain tolerances and react to pain in a different way. That is why there are pain clinics. They can do great things. Maybe you should give it a try. Also, might want to find a therapist who would talk about your pain and what you can do in your head to deal with the pain. Don't think that sounds far fetched as there is more than one way to skin a cat. Irisih ;D
Title: Re: Time to say good by
Post by: gurs on June 13, 2010, 06:06:04 AM
I just read a great article in this weeks People magazine (June 21) about a lady that had some kidney issues and they couldnt figure out why. She finally got in at
the NIH Undiagnosed Disease program and finally found her problem...an antibody in her blood impeding one of her proteins..she is doing much better now.
I also saw a TV special on discovery health about this center, and thought of you immed.

Dont give up...I would def contact this place!

rarediseases.info.nih.gov/undiagnosed
Title: Re: Time to say good by
Post by: shevonne on June 13, 2010, 11:04:42 AM
I saw something on that channel too; something called Reikers i think.  I immediately thought of navydad too!  Don't give up there is still hope and maybe you can look into Reikers also.  Praying for you!
Title: Re: Time to say good by
Post by: Babs659 on June 13, 2010, 04:31:49 PM
Hang in there, Navydad.  Everyone has good advice.  A friend of mine had chronic pain and she went through several doctors before one found just the right combination of meds. 

Please stay in touch---what have you got to lose and we all love you here.
Title: Re: Time to say good by
Post by: harlin on June 13, 2010, 06:35:53 PM
Navydad, I am truely so sorry for you. We were all hopeing that you had finally found some answers.
We are all certainly praying for you and wishing you well.

love and prayers for you, harlin
Title: Re: Time to say good by
Post by: sleeeepy on June 13, 2010, 07:13:39 PM
Hey Navydad, just a note to tell you that we are all thinking about you and hoping that you will find some answers soon. We all know how you feel and want you to continue with us in our little family. Doesn't matter what you have because we are all sick and we all need each other.

Some of us aren't even sure what autoimmune disease we have, but we need to stick together. Just know that we are always here for you no matter when you need us even if you don't want to post as often.  Take care....Go Pens.....Mary
Title: Re: Time to say good by
Post by: saranski on June 13, 2010, 08:32:08 PM
Hi,
sorry to hear what is going on with you.  I read an article in People magazine today, the one with Natalie Holloway on the cover.  there was an article in there about a hospital/clinic with 50+ doctors that all they do is work on medical cases that no one can solve.  it was in this week's People magazine.  i am in bed now, but will post the clinic tomorrow, or you could go onto their website and look it up, it is worth a shot!!!!!  Best of luck.
Sarah
Title: Re: Time to say good by
Post by: Joe S. on June 14, 2010, 04:49:30 AM
Pain management takes time and practice. It is not and overnight relief. It is also tough to find a good pain clinic. We have several in MN but the alternative one that I went to no longer exhists. Most just see to collect the money and say you are cured. There support groups for Sj and others for Chronic Pain. They usually do not have any fees and seem to have good success rates. The general principle of a support group is, "Helping you helps me".

I found having someone that you could talk to with similar problems helped me not to feel all alone and isolated. That helped me through the suicide decade. Take care of yourself. Be kind to yourself.
Title: Re: Time to say good by
Post by: bjnc on June 14, 2010, 04:50:36 AM
Navydad,

I'm so glad you haven't left the board.  But I hate what you're having to go through.  Please don't give up, and keep us posted.  We're all pulling for you.

With prayers,
Becky
Title: Re: Time to say good by
Post by: mac on June 14, 2010, 06:08:06 AM
navydad.... ???

What are we all thinking????   ???   ???
You need to go to Trenton, NJ and visit with Dr House and his team!!! ;D  They can solve any and all impossible cases and they do it in an hour!
Don't ya just wish and pray there really were doctors like that?

Sad PA lost Lord Stanley's Cup at both ends of the state but I understand Patrick Sharp will be able to take The Cup to my little buddy Connor for his 'hat trick'.

Hang in there friend, the fat lady has not sung.
m
Title: Re: Time to say good by
Post by: Nans on June 14, 2010, 09:17:58 AM
>>>You need to go to Trenton, NJ and visit with Dr House and his team!!! Grin  They can solve any and all impossible cases and they do it in an hour! <<<

Yeah!  I saw the episode where he diagnosed a woman with Sjogren's Syndrome by cutting an onion in front of her face.  When she didn't make any tears, he made the diagnosis.
Title: Re: Time to say good by
Post by: beverley on June 14, 2010, 01:37:03 PM
Navydad,

Sorry you haven't got any answers, but I am soooo pleased you haven't deserted us yet.  We need you as much as you need us!

Beverley
Title: Re: Time to say good by
Post by: Net on June 14, 2010, 09:39:39 PM
I haven't been on the site in awhile and am soooo sorry to hear about what you're going through navydad. I was looking up about silly old bladder infections and read your very sad situation. I have heard such good things of Mayo and am sooo disappointed that you are feeling left high and dry. I know when I'm feeling crappy when things turn around you really appreciate the good feeling days. Sounds like you aren't having 'any' of them. Big hugs and hang in there, keep us posted, and keep letting those docs know that you don't have to have a diagnosis, just let you be 'you' again !! Hugs again--Net
P.S. Sjogrens or not, you are always welcome here, heck 'are we even diagnosed correctly?'--