Scary update...

I met with the new doctor this morning.  I really enjoyed her.  She seemed very knowledgeable and actually was able to give me some answers as opposed to other appointments where I didn't know anything.  

I'm not going to lie, I'm so scared and nervous for what is ahead of me.  But, I'm also a little relieved to finally have gotten some possible answers.  

So she thinks that the stabbing pain is a result of my small bowel twisting.  Then when the stabbing stops, it's because it's untwisting itself.  I asked her if that would show up in the CT or MRI.  She said that the only way it would show up in either of those would be if it was twisted at that exact moment.  Otherwise wouldn't be able to tell.  But, when I had both of those tests done, I wasn't in very severe pain.  She is referring me to a GI specialist (yes, another doctor--make that 6 doctors that I am seeing now).  She wants them to check it out to be safe.  Since my tumor is pressing on my small bowel, it's something not to mess around with.  If this is the case, there will definitely be some scary times ahead for me.  It's highly possible that I will need to have Dezzie removed sooner rather than later. 

I will be having a minor outpatient surgery on March 10.  It's called a Celiac Plexus Block.  Basically they will go in through my spine and insert numbing pain medicine into the nerves.  If this works, I will get this done as frequently as needed.  I sure hope it works.  I'm scared for it, but I'm willing to try anything.

She also changed one of my medicines that will hopefully help with the nerves in the gut as well.  I told her how I'm so nauseous every night too so got some ideas to hopefully help with that.  Aye yi yi…


What a way to spend Rare Disease Day by being at the hospital all morning!



On another note…. I'm especially having a hard time getting out of this funk.  I know I should be happy that my birthday is Tuesday, especially now.  Birthdays and holidays have a whole new meaning now.  Don't get me wrong, I am very happy and fortunate to be able to celebrate another year.  However, I will be 26 so I will be losing my secondary insurance.  If it was any other birthday, I would be happy.  But I dunno, I'm just so blah….