Author Topic: New Topic: Information Update on Sass  (Read 11322 times)

iraisin

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Re: New Topic: Information Update on Sass
« Reply #15 on: June 15, 2012, 02:40:13 PM »
Thank you, thank you, thank you FATHER!!!

Sass, get through this and come back and teach us all what to look for, and please, pass along your good doctor's names. I am in the Houston area and these could be good people for me to be aware of.

What a relief. I am happy for you. I hope the biopsy goes well. Thanks for getting back w/us on this stressful, hectic, unfamiliar day you are having. What a good person you are.

Belsey1

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Re: New Topic: Information Update on Sass
« Reply #16 on: June 15, 2012, 02:56:46 PM »
Glad you are not looking at a lung transplant, but sorry it is an ER and you may have to have chemo, etc.  Best of luck and wing you a speedy recovery.

sass

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Re: New Topic: Information Update on Sass
« Reply #17 on: June 15, 2012, 03:10:15 PM »
Few more minutes before I eat. Forgive me if I am repetative. So, just got back to room. Another night in Houston. News a little different now, but still treatable. Waiting on CT Scan. Will have lung biopsy next week probably. 7 day Hospital stay! :-( but that is ok). We are fighting a very aggressive disease growing in the lungs. It will be a battle, but one that we will conquer with the help of The Lord! This is awesome news in comparison to the one we had previously. We will have a better idea on what we are dealing with after the biopsy! Thank you all for the hundreds of prayers...keep em coming.

Nancy60

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Re: New Topic: Information Update on Sass
« Reply #18 on: June 15, 2012, 03:51:41 PM »
Sass,

I am so glad to hear the news has changed and things are treatable.  I will be keeping you in my prayers for the treatments to be effective!  Do share the names of your doctors as I am in the North Texas area, you never know when you might need to get a more expert opinion, hopefully I will never need it, but I keep lists of information ...just in case.  Again, glad the news is looking better!

Nancy

Sadie963

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Re: New Topic: Information Update on Sass
« Reply #19 on: June 15, 2012, 03:57:24 PM »
WOW ;D ...Congratulations on NOT needing a lung transplant!

I'm so sorry you still have to deal with an aggressive version of sjogren's in your lungs.

Please know my prayers and thoughts will be with you daily to overcome your trials with this illness. 


Skylar

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Re: New Topic: Information Update on Sass
« Reply #20 on: June 15, 2012, 04:05:07 PM »
Hooray - you're not out of the woods but at least you are getting the right diagnosis and the right treatment.

Healing vibes.... and a huge bear ((((HUG))))

Sleepy In Seattle

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Re: New Topic: Information Update on Sass
« Reply #21 on: June 15, 2012, 04:11:08 PM »
Sass - what WONDERFUL news!!! (Haha - I know that would sound really strange to most people...what a topsy-turvy world we live in with this stuff!!!!  :o)

CONTINUING to send all the best to you....drugs are no picnic but at least there are a lot they can try and they don't involve surgery. SO GLAD you saw other doctors.....always demand the best!!!! You are worth it....

This has been a pretty good day for me, and you just made it so much better with this news. Funny - I don't know you at all but I worry about you and your family every day....  ::) ;D

Best of luck with this new direction!!!!
Sjogren's, Lupus, Raynaud's, APS
Fatigue, Brain Fog, Autoimmune Hearing Loss, joint/muscle pain, dry mouth, clots in retina, etc
GF, "semi-Paleo" diet, Supplements, Plaquenil 400mg/day, Aspirin 325mg/day (for APS), Methotrexate 7mg/2x per week, Prednisone 3.5mg/day

gold55

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Re: New Topic: Information Update on Sass
« Reply #22 on: June 15, 2012, 04:43:32 PM »
congrats on the great news sass!!! 
Dx#1:  dx changed to Sicca Syndrome + UCTD (how wonderful)
Dx#2:  Osteoarthritis and high cholesterol
Meds:  my golden retrievers, my doodle, otc tylenol, ibuprofen, mobic, vitamins, omegas, oral pilocarpine, liguid chondroiten/glucosamine with

Carolina

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Re: New Topic: Information Update on Sass
« Reply #23 on: June 15, 2012, 04:58:47 PM »
Hey Sass!

Hang in there.

Keep us posted.

Amazing when terrible news is an improvement over even MORE terrible news.  Isn't it?

We are with you all the way.

Glad you have so much 'help' in your corner, girl.

Hugs

Elaine
Female-Elaine,78-CVID-pSJS-IC-PN-CAD-Osteoarth-SFN-Knee/Shoulder Degeneration-SIBO-Act.Purpura-Tinitus-Meniere's-Hiatal Hernia-Achalasia-Hand Surgeries, UTI's-Braces/Walker-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-D-Mannose-NAC-Omega 3-Naltrexone-Esomeprazol

jazzlover

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Re: New Topic: Information Update on Sass
« Reply #24 on: June 15, 2012, 05:30:31 PM »
Very good.. but still sounds bad... so sorry!!! I'm living in another state, but was born and raised in Houston. I hope everyone there treats you WELL! A great medical center, to say the least.

Hugs and prayers for you!!
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease

irish

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Re: New Topic: Information Update on Sass
« Reply #25 on: June 15, 2012, 05:58:45 PM »
sass, Good to hear your news. I bet it was something that all of us were wondering about all the time. Seems like docs have trouble latching onto the fact that the major organs can be affected in sjogrens. We need to remind our docs that the lungs are secreting organs. They secrete mucus.

Good luck with your tests and with all the meds they will throw at you. Irish

sass

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Re: New Topic: Information Update on Sass
« Reply #26 on: June 15, 2012, 06:27:54 PM »
Hey Guys,

I am very tired, but still up.  my life!!  Things have settled in a bit and I wanted to check in! 
 Carolina, Yes, if most people would have been told this news, they would be hanging thier heads.

But us,  no we celebrate because we all know the delicacy of how quick things can and WILL change for us. 

Sadly, we understand what so many don't...This disease that is called a syndrome (lol) can kill.  I don't get why this. funny sounding name has not got more attention.

I gotta think of a way to get it more recognition.  I want...when people hear Sjogren's , they hear the same  and feel the same thing in the brain a when they hear MS or Breast Cancer. 

So listening to Martini MvBride's song, "I' m gonna love you through it", She mentions Cancer.  I felt a bit left out.  Not a jealous thing, but a hey, don't we count too feeling!

So, I have decided to write a song!  And I am thinking either Jennifer Nettles or Miranda Lambert!  Just gotta think over those two.

Now, hmmmm...what rhymes with Sjogren's???

earth to Sass, earth to sass....huh,,oh ok i'm back!

The rheumy says this is a very, very aggressive thing.  They say it is bad and I need treatment immed, but they would prefer to get the CT scan in first.  And to have the biopsy in.  I wanted to hang in Houston until tomorrow, just in case they wanted to send me somewhere in the morning of tonight. 

The medical centers do not ever close here.

Oh yea, My new Rheumy is Dr Ruben, considered to be one of the best in his field, in the nation!  I could never get in with him before because of the waiting list for the waiting list!!  But my Pulmonary, DR Hierlihy, knows him and they work closely together..

Had a few transportaition problems..  I just about had a meltdown because I disliek incompentency.  So when I was an hour late to get the CT can done and till could not get transportation, welll i got a little teary. 

We have been to the medical center tons of times and never anything like this!  I know ---nothing to eat since yesterday, not much to drink, hot tired, relieved, scared again, hot, could NOT breathe, started panting in this hot summer Texas heat. anxious, and then a big blurp in the middle. well I just broke down boohooing.  My poor hubby looked at me like I had lost my mind.  I am his Rock...He can't handle me not being strong!!

  I have to keep dog paddling in deep water, just so he thinks I can swim!

Anyway, I pulled it together, but that driver, he sure got on the ball, when he saw all the tears running down my face! 

But the main word hear is this is a very, very serious issue.  It has progressed so much that it still may get the best of me, but I don't like dancing with the devil, so I expel those thoughts from my head.  He can just waltz right outta this chick's head.  At 53, I am still
full of sass! 

most days I feel like I am 80 and 25 back and forth thru the day.  Dr Jeykll Mr Hyde ....

But seriously, we have to take better care of ourselves.  Maybe if I had stayed on Plaquenil, this horrific inflammation would be more at bay! 

When we discussed my health issues, DR Ruben, looked at me and said. Welll. I just thought you were interesting, but you are much more complicated than thought.  I think I may have found that doctor that likes a good mystery.  I mentioned that I have Liden Factor V, and he looked delighted as he smiled.  he appeared to be finding pieces of a puzzle to solve a crime.

He discovered that part of my body is very flexible and the other part is not!  By the way, Flexible is not really a good thing afterall.   

They are describing this as an Urgent or Emergency Issue.  The serious part, is I don't think they know what I do.  I have known it is Urgent.  I feel my lungs and chest filling up. 
It is getting harder to breath even with oxygen.  They actually feel like they are growing!  We will see, next week!

Thank for all the woooohooos and all.  Ya'll mean the world to me.  what 's the song...hmmmmm   Strangers in the Dark,  lalala...lala   old Frank Sinatra tune   ~sass~





Cricket

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Re: New Topic: Information Update on Sass
« Reply #27 on: June 15, 2012, 06:35:27 PM »
Sass

So glad to hear your good news!  I know you have the sass to fight this and come out the winner!!

Prayers still coming!
Female 64 yrs. old with:~Lymphoma ~SJS~, Fibro, Neuropathy, Spinal  Stenosis, Degenerative Discs, Shingles Arthritis, Hypo-thyroid.
Rituxan, Synthroid, Lopressor, Vasotec, Zantac, Zyrtec, evoxac, Lexapro, Neurotin, Ambien, Zanaflex, Voltarm, Vicodin, fish oil, Centrum vit.,  CoQ10, vit. D, Miralax

Cdbhappy

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Re: New Topic: Information Update on Sass
« Reply #28 on: June 15, 2012, 07:02:05 PM »
Sass,

I read your message and hear an overwhelming message of HOPE.   Such a serious condition and it seems you have landed in the right place with the right team to treat you.
I hope you fell bathed in prayer throughout this journey.

God blass you,
Cindy
Lupus, fibromyalgia, sjogrens, bladder cancer.
One day at a time- learning how to mange my changing body.

quietdynamics

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Re: New Topic: Information Update on Sass
« Reply #29 on: June 15, 2012, 07:04:45 PM »
Sass....my head is spinning....somewhere in the "oh???!!! zone"  I go there sometimes.

I am going to focus on your good news....no transplant. 

Carry some munchies in your purse.

Praying that you and your husband get some well deserved rest this weekend.

Hugs to you sweet lady
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"