Life with Chronic Illness

Monday I had my official 6 week post op appointments with my endocrinologist and surgeon.  They went pretty much as expected.  My cortisol levels keep rising, and while not abnormally high yet, this is not a good sign and we will consider me not cured of Cushing's.  My surgeon said that since I am past the 6 week mark, I would officially be the longest delayed cure he has ever seen if my cortisol levels started to drop, so I think it's safe to say that the second surgery was not a success.  I could tell he felt bad about it, because he seemed interested and engaged in our conversation, where before surgery he was Mr. Business and didn't have a warm, fuzzy personality.  We discussed my options, and I managed to just make it into a clinical trial of a new drug.  I just have to have a high 24 hr UFC first, and hopefully the one I brought yesterday broke that normal limit so I can get started.  The medication should take away or improve all of the symptoms of Cushing's.  I…

Then I woke up on Monday morning with a fever of 104.2 and a sore throat.  Since 90% of the kids we've seen in the office this week had strep, I figured that's what it was and called my mom to come to the doctor's with me.  On the way up I had a bad feeling, and felt like I felt TOO sick if I just had strep.  Turns out my bad feeling was totally right.

We got there and my heart rate was around 140, combine that with a positive rapid strep test and my recent pituitary surgery and they sent me in an ambulance to MGH.  Of course, this is the one week that my endocrinologist is on vacation, so I talked to someone else who seemed very confused as to why I was going to the ER.   We got to the ER, my mom beat the ambulance (anyone who's ever driven with my mom shouldn't be surprised by this) and that started 36 hours of scary hospital stuff.

My heart rate wouldn't come down, even after tons of IV fluids, and a chest x-ray showed that I had a pretty bad case of pneumoni…

Tomorrow will be my first day back at work since December 15th.  I have VERY mixed feelings about it.  I'm super nervous, because my job is pretty physically demanding, so I'll be on my feet all day and I'm not sure how my body will handle it, seeing as small tasks like going to the grocery store or over to my mom's seem like a big deal these days.  I was hoping that when I went back, I would at least have good news to tell everyone.  Unfortunately, that's not the case.  I don't necessarily have any BAD news yet, but I definitely have been noticing more and more since I've come off the dexamethasone that I still feel like I have Cushing's.

As some of you may know, I'm not the best at holding it together (I cry if someone looks at me funny...it's a problem).  I'm really nervous for everyone to ask how I'm doing and why I was out for so long because I don't think I'll be able to answer those questions without tears, and I HATE cryi…

I did an interview last week for Cushing's Blog Talk Radio!  You can listen to it HERE, or find it on iTunes by searching for Cushings Help under podcasts.   It was really fun to do, thanks for having me Mary O!