Another ENT Visit Today, Infusion tomorrow

With the crappy snowstorm thats hitting us in Denver right now, I got a call last night from the infusion center that my infusion might not happen.  I shot a message off to my immunologist last night with a backup game plan should the infusion get canceled.  The infusion center called me back today and reassured me that the infusion will happen tomorrow, either on time, or a later start.  That was relieving to hear.  I have been literally counting down the hours till my infusion happens.  I am hopeful that the infusion happens tomorrow with minimal to no side effects. 

Last night my ENT’s office called me about a message that I had sent 2 days ago regarding more issues that were starting to happen symptom wise.  They called me in today to take a look at me again.  The whole left side of my face is starting to hurt, mostly where the parotid gland is.  I had my oral surgeon take a look at it yesterday, and he said to bring it up with the ENT.  Once again my least favorite part about the ENT, the scope.  They took a look in my ears, nose, and throat (funny), just looked like allergies.  I then brought up the pus issue, as well as the swolleness that I’m feeling on the left side of my face and neck.  I guess the infection/inflammation has moved to the parotid gland.  The vision issues are continuing to get much worse.  At this point, I have stopped driving.  I don’t want to cause an accident.  So my ENT’s NP wants to start me on steroids.  The one drug I have actively refused to take since last summer.  Steroids suppress your immune system, however, at this point it’s inevitable that I have to take them at some point here.  My NP told me to talk to my ENT who will be doing the surgery on Friday and add the parotid / face / neck pain up, in the meantime she will go back through the MRI & CT and look into the parotid and the general area.

As for tomorrow, my anxiety is somewhat starting to build.  Fear of the unknown.  My worst fear as always.  I know that tomorrow is out of my control.  Mostly all of my health issues are out of my control now.  I am glad that I now have a great medical team taking care of me, and taking charge and getting things figured out vs. the typical “I don’t know” answer.  Between the ENT, and immunologist at Immunoe, I have found out more in a month that it took UC Health/Porter to figure out in what, a year?  But maybe the finish line isn’t too far off now.  Perhaps with the IVIg, and the surgery, I’ll be back on the road to recovery.  I think I’ve finally found the bottom of the stairs I’ve been falling down for the past 2 years.

That’s all I can write for now.  I’m just exhausted.