Clinical Trial - Infusion #3

No photos from today...probably because I was so freaking tired.  I was probably worse than a drunk driver this morning on the road, and it's not as though I didn't sleep last night.  It just seems that, in the last 2 months, there is no amount of sleep that helps anymore.  I'm ALWAYS tired, and it's now gotten to the point where I can fall asleep almost anywhere within a couple of minutes.  Anyone that really knows me has heard me say that I'm not a "napper", but I guess I am now.

Once I got to my room for the infusion, I laid in the hospital bed, spoke to my doctor quickly and he examined me.  We changed up my meds a bit to try to remedy some of my suffering...cut back on one of my blood pressure meds, as my bp was 95/63.  He also told me to take my diuretics at 2:00pm now because I mentioned that I've had to get up a couple of times a night to pee, and that's a pretty recent development.  Apparently the diuretics last for about 6 hours, so changing it to 2pm will hopefully get all the water out that's possible before I go to bed.  After they put the IV in, I fell asleep.  Apparently, it was such a deep sleep that I didn't even know that my doctor came back in to check on me before he headed to the airport.  Yikes!  Not only am I a napper, but I'm a pretty sound napper!

My swelling is awful right now, and I DO have pictures of that.  This is actually quite embarassing to show, but I think everyone needs to see it....to understand why I complain about it all the time.

I couldn't even bend my knees when I went to bed last night, which might explain why I didn't sleep all that well as I'm a fetal sleeper.  This used to go away with a night of putting my feet up, but that's not working right now.  I wake up like this and go to bed like this, and all-day long I'm horribly uncomfortable, and sometimes in a decent amount of pain.

This has always gone away in the past, and I'm hanging onto that teeny tiny thread of hope again, because this is REALLY getting to me.  I'm depressed, no doubt about it.

I also had an MRI today to check out what's going on with my hips.  While the pain has gotten better, it's not gone yet.  I've had an MRI in the past, but it was an open-sided one.  I'm EXTREMELY claustrophobic, so this part of the day freaked me out.  When I laid up on the table, I immediately put in the earplugs they give you and shut my eyes before I actually went inside the tube.  I kept them closed the entire time...I was afraid that I'd completely freak out if I opened them, and they'd have to repeat the image.  I don't remember it being so ridiculously loud!  I just laid there, my mind wandering (as it does most of the time).

I had to fill out a survey right before my infusion...a normal part of a clinical trial.  Geesh, I think acknowledging how crappy I feel made me feel crappier.  I feel very remote....like I'm watching my life happen but not living it right now.  I can't figure out what to do to make it any better.  The arrival of spring (FINALLY!) has helped, but only minimally.

I found out last week that 4 people I know are expecting babies.  While I'm absolutely THRILLED for these ladies (they're truly wonderful) it makes me sad, as it's just another reminder of what this damn disease has robbed me of.