Author Topic: Time to say good by  (Read 20383 times)

Joy Cox

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Re: Time to say good by
« Reply #15 on: June 05, 2010, 07:48:07 PM »
Goodbye, You'll certainly will be missed!  Best Wishes, Joy

Shashi11962

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Re: Time to say good by
« Reply #16 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

season

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Re: Time to say good by
« Reply #17 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.

genko_b

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Re: Time to say good by
« Reply #18 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

irish

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Re: Time to say good by
« Reply #19 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!!!!

susanep

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Re: Time to say good by
« Reply #20 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
Sjogren's, Lupus, Rheumatoid Arthritis, Hypothyroid, Fibro, Sleep Apnea, Diabetes 2, Asthma, and Gerd.  (Meds I take) Omeprazole, Pilocarpine, Levothyroxine, Effexor, Cpap, Aspirin, Mobic, Prilosec,, Xanax, Restasis, Systane,Vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Nasonex, and Proventi

gurs

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Re: Time to say good by
« Reply #21 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....

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

Carolina

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Re: Time to say good by
« Reply #22 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
Female-Elaine,79-CVID-pSJS-WMD (Eylea) Inter.
Cys-PN-CAD-Osteoarth-SFN-Oral Lichen Planus-SIBO-Act.Purpura-Tinitus-Meniere's-Hearing Loss-Achalasia-Hand Surgeries, UTI's-Braces/Walker-IVIG Gamx-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-D-Mannose-NAC-Om.3-Methotrexate-Esome

jstroble

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Re: Time to say good by
« Reply #23 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

ruby52

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Re: Time to say good by
« Reply #24 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

jaygee

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Re: Time to say good by
« Reply #25 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

kwolfsheimer

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Re: Time to say good by
« Reply #26 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

Bucky

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Re: Time to say good by
« Reply #27 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
Come sit a spell and join in live chat - we serve non-fattening, zero calorie goodies while discussing all kinds of things.  ;D

http://www.sjogrensworld.org/chats.htm   (find our chat times here!)

beverley

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Re: Time to say good by
« Reply #28 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

Nans

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Re: Time to say good by
« Reply #29 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