Re: Re: Salivary gland biopsy-Sher

[Guest guest]

Hi, Dear Sher!

I read your posts too, and know your current troubles. I wake up in the morning thinking about the people here and the various trials everyone is going through. We can't just seem to coast at any time, can we? You are almost to that milestone birthday, and we will all celebrate with you!

I get overwhelmed easily these days keeping up with all these new diseases , meds, and the board. I am trying to stay off the computer for the most part because before I know, the day is gone. I have become so ADD, it's ridiculous. I had some good news around the 17th, with all my PFTs within normal range. Doctor was very thorough and studied everything carefully. I got a new CT scan last week to compare with April's and am awaiting his call. He said over and over that this is not "severe" as previous doctor had written on paperwork. Do I fully trust him? Not really. After being here awhile, I know that this is not a doctor that has a rigid standard like I've heard about here, although this is a teaching hospital. Maybe because my PFTs were normal, I never heard 6 minute walk. He did actually say that it is not IPF, knowing that I have full blown autoimmune issues with blood tests to confirm. Thank goodness I'm

armed with huge amounts of information from this group of people and will never feel alone.

Hey....it's about to rain in my neck of the woods! I am off to the back porch to enjoy. Take care, Sher, and thanks for saying "hi"!

(PF, Sjogren's, Raynaud's Apr.'08)

age 52 Mansfield, TX

From: Joyce <jdalton501hotmail (DOT) com>Subject: Re: Salivary gland biopsyTo: Breathe-Support@ yahoogroups. comDate: Sunday, July 6, 2008, 1:11 PM

Caro,

I have been diagnosed by bloodwork and symptoms. I just think all that torture that you went through was unnecessary. ...but, then I am not a doc. I am so glad that they never did this and I will never let them, now that I know. Sometimes I think the medicos just sit around dreaming up torture methods. I for one am tired of suffering.

I will pray for your pain relief and fast healing. Just take those pain pills and sleep.

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16

>> Caro... oh my golly I'm so sorry to hear about the procedure and results! I had no idea the results could be as you say. I hope the pain doesn't last long and you soon will recover. When you can do this> > Hear me talk! > then we know you are ok!> > MamaSher, age 69. IPF 3-06, OR./ Nasturtiums> Don't fret about tomorrow, God is already there!> > Salivary gland biopsy> > > Hi all,> > Well, I had the biopsy of my salivary glands on Tuesday. They gave > me Versed for the procedure so I was pretty out of it for the rest of > the day. My dad drove me back. As soon as the

numbness wore off, > OMG!! It was horrible!! If anyone told me again that I would need > this done to diagnose Sjogren's, I would not do it!! I have been > living off of Fat Free Jell-O Pudding, Fat-Free Jell-0 and soup all > week. AANDDNDD I only lost 1 freaking pound!! Can you believe it? > Only 1 pound!! So I still have 19 pounds to go before I go back to > the pulmo in 3 months. I guess 1 is better than none, but I have > been starving all week!! Even though I have been on so many pain > pills I really haven't been hungry anyway. My lip was so swollen > when I got up Wednesday, I looked like somebody had beat the crap out > of me. By Wednesday night, I had started bruising on the outside of > my lip. By Thursday, still had fat lip with more bruising on the > outside, plus the nurse had to try 3 times to get the IV in, and the > second try she did, the vein

totally blew and a huge knot popped up > and now I have a dark black and blue bruise on my arm bigger than a > silver dollar. I have been surviving on Lortab and Lorcet for the > whole week since Tuesday. I haven't done any exercise at all this > week. I had fever Wednesday and Thursday. Today was the first day I > have actually tried to chew anything and I can only chew if I eat on > the left side and if I take really small bites. I know it could be a > lot worse, especially after reading the posts from Vicky and Joyce, > and I am not complaining, just simply saying if I had it to do over > again, I would have told them just let the blood test be enough for a > diagnosis for me. I am very hesitant now to even go to the eye > doctor and get the tear duct study done. I don't have a clue how > painful that will or will not be. > > Well that is how my week has

been. I hope you all had a great Fourth > of July. I didn't get to do any cooking out or anything cuz I > couldn't eat, but I sure wanted to.> > At least today I can drink without using a straw and that is a real > plus!! > > Hope you all have a great night!!> > Caro>