kaydi8's Journal

I am sooo ready for Christmas!  I'm looking forward to watching the nieces and nephews open their presents, to spend time with family, to reflect on the reason for the celebration, and to have some time away from work.  I'm very glad that I finished shopping early and equally glad that I decided to skip the baking.  As if I had the energy to bake, but still...

Humira is working - not perfectly, but I have days where the pain is minimal and that's a huge blessing.  Other days, not as good, but still better than before, and I'm off prednisone, so...I'm pleased.  I did buy a new car - mine was too low, which meant essentially falling for the last 6 inches when getting in, then needing to use my upper body too much when getting out. My shoulders and hips are better since the change.  Extreme, but I'm glad I did it. 

My pulmonologist put me on oxygen at night - it turns out I have severe nocturnal hypoxemia.  We don't know exactly why - I have some apnea, but nothing significant, and my asthma isn't severe enough to cause it, so I'm (once again) playing stump the doctor.  Of course, hypoxemia gives us a another reason for the pulmonary hypertension (or vice versa).  Doc is still talking about doing a right heart cath but is letting me put it off for a while.  Of note...the company that provides my oxygen concentrator advised me to tell the local fire department and EMS that I have this equipment.  So, I drove to the fire house and spoke to the fire fighters and EMTs, telling them that I had an oxygen concentrator in my apartment.  They asked me what that was.  Ummm. Yeah.

The weight continues to fall off, and I continue to have little appetite.  This makes the doctor nervous, particularly since they haven't been able to find a physical cause.  The only physical cause, really, is that no appetite means I'm not eating.  Well, of course I'm eating, just not very much.  I think they'd be more freaked out if I WAS eating more and still losing weight.  But, they're keeping a watchful eye, so if there's something to find, I'm sure they'll find it. I can't remember the last time I was this close to a normal body weight.  People who don't know why I'm losing weight tell me how great I look - I've learned to just say thanks.  They don't need to know it's not intentional, right?  Telling them just makes them feel awkward, and there's no need for that.  And really, I do look better than I have in a really long time - I wish I felt better to match, but at least I feel better than I did 6 months ago.