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~
