Friday, February 28, 2014

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….

Wednesday, February 26, 2014

Ughhh….

I'm so frustrated.  I had to wait a little bit before writing this blog post because I needed to calm down.  I just want answers.  

I had to be at the hospital at 5:30 this morning!  I thought they were being funny yesterday when they called to have me come in earlier.  I had blood work at 5:30 and a MRI at 6:30.  Then I saw the doctor at 9.  

I have to be honest.  The MRI was actually enjoyable.  Well, as enjoyable as a test can be.  I usually don't like MRI's because I get so claustrophobic, however they put some sort of contraption over my head and connected a mirror to it that was at a special angle so I could see a TV on the outside of the tube.  They put "Despicable Me" on to watch, too.  I have never seen the movie, but now I want to.  It definitely made the time go by faster and made me forget about being in a small tube. They put headphones on me too to cover up the loud noises.  If you haven't heard the noises a MRI makes, watch this.  Unfortunately due to the location of my tumor, I had to hold my breathe for 15-25 seconds at a time, too.  Otherwise I probably would have fallen asleep. Oh and I didn't have to drink any sort of nasty drink beforehand so that made it even better!  If only a MRI wasn't a lot more expensive than a CT, I would request a MRI every time...  

But, unfortunately, the MRI didn't show anything.  I mean, it's good that it didn't show any sort of new mass or anything, but still it's so frustrating because I just want answers.  The doctor is getting worried that the endometriosis is growing in the hysterectomy incision.  He says it's very rare….but everything about me has been so rare.  Unfortunately, endometriosis won't show up in any sort of test.  Therefore, there is a good chance that he might have to do another laproscopic surgery soon to see what's going on.     

They prescribed me a lidocaine pain patch to try.  I'm hoping that this helps, especially because this is something that I would be able to use while at work for some relief.  I'm willing to try anything.  The lidocaine cream didn't work, but they say that this patch is a stronger dosage and should seep into my skin.  

I get a little frustrated because it does seem sometimes that their solution to everything is "here's some more pain pills".  I try not to take pain pills unless I am in horrendous pain.  I don't like the side effects at all.  I want to try to live as normal of a life as possible.  But how am I supposed to do that if I'm doped up all day errday?  Although, I don't even know what "normal" is anymore…

Oh, and guess what.  I got referred to ANOTHER doctor.  So, that makes it FIVE doctors that I am seeing now.  Aye yi yi.  I will see this new doctor on Friday.  She is a pain management doctor, too.  But she specializes in doing more with long term pain treatments/shots/etc.  Hopefully she's got some sort of solutions.

Ughhhhh….