LisaBulman

What a week!

35 posts in this topic

I went back to the ENT first thing yesterday morning and she said everything looked great. It felt great and the stitches were already gone. Things were fabulous!

 

I had a dream last night, well we'll call it a nightmare. I dreamt that it came back and it was huge! I remember jumping up and feeling if it was there. It wasn't, I was relieved so back to sleep I went.

 

This morning, I did my usual, get the kids to school, laundry, clean up etc... I decided to go out to do a bit more shopping. As I was driving in the car I got a really weird feeling. I felt under my tongue and there was a hard little ball. OH NO!!! It really is coming back!! I went ahead with shopping all the while I could feel it growing. I put a call into my doctor and I am waiting for a call back. It is growing by the minute and it hurts because she removed so much tissue from underneath it can't stretch. BOO HOO!!!

 

Hugs,

Lisa

 

PS Has this ever happened to anyone?


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Oh Lisa! I can't even imagine what that must be like! I'm so sorry you are having so much trouble. :( Isn't there something else the doctor can do besides just cut it out when it happens??? :huh:

 

Hugs,

Christy


Love makes the world go around!

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Oh, Lisa.....that sounds so painful. Maybe it's just filled in with infection or blood. I don't know but I will keep you in my thoughts.

 

Take care, Everyone.

Margaret

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Lisa,

I am so sorry for what is happening with you. I have Sjogren's, but I have never had the problem you are having. That is the pits!!!!!!!!!!!!!!!!!!!!!!!

My thoughts are with you.

Nan

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Oh my! I'm not sure whether your trauma or Grace's made me wince more!! Deary me~ Brave, brave ladies, the pair of you. Hope everything heals up properly for you both.

 

Hugs and a virtual cup of hot chocolate (would that help? You can have marshmallows and/or whipped cream on top...),

JJ

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Lisa,

I'm surprised you actually get any sleep, especially REM! :) So is this mind over matter working the wrong way. You suppose to have good dreams for this to work, not nightmares!

 

How freaky! I can't imagine something growing that fast inside my body. I hope your doctor can get to you right away!

 

UGH!


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

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International Scleroderma Network (ISN)

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This has to be terrible. There has to be a reason that this keeps happening and something should be able to be done to prevent it from keeping on happening. I hope you get to where it quits and you are free of this going on and on. I hate that you are having to go through this!

 

Warm hugs,

 

Peggy

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Thanks everyone, especially for the hot chocolate JJ! YUMMY!! It is definitely not an infection because it was biopsied and sent to the lab. There is no blood either...just saliva.

 

I called my doctor and she has ordered a CAT scan for me. I will be going Thursday evening. She is going to be checking the glands to try to figure this out. My last visit with her she mentioned taking out the gland all together. I am a bit nervous about that. We'll have to see what the results of the scan will be. As the day went on it got bigger and bigger and really started to hurt. About 5:30 I was talking to a friend and it popped! I now have a little relief until it fills back up tomorrow. :(

 

I really don't have any time for this nonsense!! Nothing will be done before the holiday's because I have two little one's and I would like to enjoy the season. In January I am scheduled to go to Disney with Emma (my 10 yr old) with her dance company. She'll be dancing there. So now I am into the third week in January. UUGGHH!!

 

I'll keep you posted!

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Hi Lisa,

 

Oh yeowch! Well hopefully the CT scan will show something that can be treated without removing the gland. If it's treatable you might want to consider doing it immediately as you might be back on your feet, and enjoying the holidays and upcoming trip, in no time flat.

 

I can tell you from firsthand experience that you do not want to let salivary gland issues linger any longer than you have to! Once they get infected, then you can have truly major issues on your hands especially if it is an antibiotic resistant infection. But who knows, with any luck it might go away completely before you have the CT!

 

See, I know how to dream, don't I?


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Well for now it is gone or should I say "deflated". I was in the middle of a conversation last night and "POP"! It burst open and all of the backed up saliva came pouring into my mouth. I guess I did a pretty good job of covering it up because no one said a thing. In a day or two it will be filled again.... hopefully the ct scan will show some easy fix it.

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Had my ct scan and just spoke to my ent. She is just as baffled as I am as to why it keeps coming back. CT scan showed no abnormalities..good... but I still have this thing in my mouth!

 

I am going back in the office on Thursday for her to cut it out and stitch it open (again) to hopefully get me through the holiday's. She said "I don't think it is going to work because your mouth heals very quickly, but we'll give it a shot before we take you in for surgery." UUGGHHHH She wants to remove the gland so I don't have to deal with this anymore. She said they will cut me under my chin and go in that way... ouch! I'll get more details on Thursday. :(

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Hi Lisa,

 

Obviously, the problem is that your saliva gland failed to read the textbook on how it is supposed to appear on the CT scan in order to properly display the problem it is having. So, what we should do is educate your saliva gland! Perhaps you could try showing it pictures of proper and improper saliva glands before its next test, so it can get a more accurate reading?

 

Maybe they will figure out more when they go in to drain it. But yipes, ouch, owie...my thoughts are with you on Thursday.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Shelley ,

 

Thanks for the giggles tonight!!! Lisa, sorry it's at your expense!!! I sure hope they can find the problem and get it resolved.

 

Take care, Everyone.

Margaret

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Shelley...too funny and thanks for the laugh!

 

Jefa.. you are absolutely correct!!!

 

I am having a cram session right now with my gland instructing it on what to do at the visit on Thursday. Hopefully it is listening...and it doesn't have those "mommy deaf ears" on. You know the one's... the ears that only hear the tv and NOTHING else around it! "Huh, what did you say?"

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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