(no subject)

okay... my lungs hurt. a lot. breathing deeply is a strain, like breathing water.

i really hope this is just a reaction to the ER. latex dust in the ventilation system often sets off my asthma... spent a couple hours in there yesterday morning with boy.

but this is painful. my throat hurts... i'm guessing that's part of the CFIDS crash i've brought on myself...

boy is cleaning, wearing a mask. he's started reacting to dust, the car, pollution... everything that makes me sick... it's like his system has been overloaded and is saying NO to everything he ingests or inhales.

i opened the sliding glass door and turned off the heat... trying to air out this place, kill some mold, etc.

cold air + painful lungs = more painful lungs

gah.

stupidity.

I am so tired

I know that times like this pass. I know that things sometimes get worse--even when it seems the only direction to go is up. And sometimes things to get better. But time passes and things change and all we can do is look back while looking forward.

i don't like cringing when i yawn. breathing shouldn't hurt like this. there was a message on my answering machine from my doctor's office manager. she profusely apologized for the act that nobody called me back today to check how i was, schedule an appointment, or let me talk to the nurse. i felt bad--i left to hit the grocery store AFTER the office closed, so she was staying late.

there was also a message from a friend who wanted to get together. he's going to be out of town for awhile and wanted to say "hey"... neither boy nor i is up for visitors, nor travel (already had to go out and find a video--chungking express--which involved three stores)... so i called him back and chatted awhile.

and my neurologist left a message regarding the CT scan of my chest. apparently i have a cyst on a bronchial tube... it appears to be benign, but he's sending the report and scan on to my PCP so she can decide where to send me. i'm glad he called.

the scan doesn't worry me, but i'm glad that he took the extra effort. he didn't even have to order the scan (the MRI techs indicated it was a good idea b/c they spotted extra lymphatic tissue behind my lungs on the spinal MRI) since he's not exactly a chest-doctor. he did, though. and he called to give me the results even though he's the head of the neurology dept at gtown and has a hella lotta stuff to do.

boy isn't feeling all that hot, but he had no reactions today. the air is still bothering him... mold, car exhaust, etc. he ate white rice, half an apple, brown rice, pineapple, and rice penne with chreese.

way too many carbs for him, but what else can he do? his triglycerides will skyrocket again, but those can be brought back down.

we cleaned a little today. actually, boy cleaned. he put away a bunch of my clothes... i directed because i can't move without getting an ultrahigh fever. this is typical CFIDS for me, though. i did some laundry. :) i need to go fold some towels before bedtime, i suppose.

i wish breathing didn't hurt so much. my inhaler made it worse... the hot shower didn't help nor hurt... there is no good position... no comfortable position... and it's hard to sleep because i wake up when i can't breathe easily.

honestly... i hate to whine and vent, but that's why i keep a journal. i can push out all this frustration and be a bit more peaceful in my mind.

and can i say how not happy i am with the pain management clinic? last friday, they told me i'd have to wait til my next appointment to discuss pain relief. nearly four weeks. a month. this is NOT what you tell someone who's having massive pain as a result of the drug you just gave her... i understand that the clinic staff and doctors are perplexed and don't know what to do with me, but they could have OFFERED to get me in sooner (they usually have available spots)... even if i didn't take them up, the OFFER would have been nice.

i expect too much. my standards are too high.

then again, this is MY body and my life. i should be able to set my own damn standards for their care.