a bit under the weather...

hey, i really don't feel well. i've been feeling slightly crappier than normal all week actually. it could just be the weather though. it's been very cold here this last week. i mean COLD (well, for the sf bay area). i, like many folks, can feel the weather in my bones. especially when it rains, like it is now. the pain. it's pretty bad, and gets even worse. but i still refuse the pain pump that the doc's have been after me to get for at least the last year now.

i've had a busy last two weeks though too. lot's of my regular once or twice monthly doctor's appointments - i have a pulmonologist, cardiologist, oncologist, rheumatologist, neurologist. and my regular tests - labs, pulmonary function tests, ekg, eeg, mri's, brain scans - all monthly. plus all my alternative medical treatments - accupuncture, accupressure, massage. and i've been doing some work from home for my father's office, and the stress that goes along with that as well.

all of that contributes to how i'm feeling. you see, because of my diseases, and how they are attacking my immune system, i have the pleasure/curse of being affected almost immediately and directly by stress, both good and bad. or like when i do too much, which to many is not much at all.... running the vaccum, sweeping, making the bed, giving ladybug a bath, cooking. i get so tired so easily, quickly.

so what happens? well, when i'm tired or i've done too much i tremor (shake), it's harder for me to walk, my speech get's worse and it's even harder for me to process and comprehend basic things.

and then there are the seizures. yes, i'm still having them. partly my fault in that i refuse to take the full dose of my siezure meds because of the serious life altering side affects. too life altering and in the worst way. i have a newly minted 6 year old. i am still working a little bit. i can not be layed out partially unconscious for 22 hours of the day just so i won't have a seizure. well, it takes about an hour for me to shake off after i have one, and i am beyond exhausted and sleepy, and all that happens like i said before when i get tired, along with losing function on the right side of my body, and my speech gets uninterpretable - it's very much like a stroke. i have them about 2-3 times a week, which is an improvement, majorly! more if i've been doing too much or am stressed. even good stress, like watching a really great "is the guy gonna get the girl in time" movie. yeah, that sucks.

basic things can trigger an episode, flare, which is what we call it. and i never know what it will be. it's so not predictable. i could do a little light housekeeping monday, then do the exact same thing thursday under the same conditions, and i'll get so sick-pain, tremors, pain, seizures, pain. there's just no knowing. and it drives juan crazy... with worry and fear. all he wants me to do is stay at home, lay in the bed, or on the sofa, and "rest". he takes the wheelchair everywhere we go and makes me use it most of the time.

well, i know i've gone off on a ramble. not a rant. no real drama or incident. just rambling.

i baked all day yesterday, trimmed the christmas tree, took pictures, and finished up D's bday card. later last night, i was in pain. the kind of pain where i really was seeing stars. that's my dreaded bone pain. i had to take extra morphine, and even that only took the edge off. but it calmed the pains rage. i was on my feet too long, moving too much, thinking too much. my body can't take all that ...... just yet.

got no sleep, was in pain all night. more intense than usual. i am so tired. i stay tired. ladybug got in the bed with us about 4:3o am coughing - she came home the other day with a fever. juan gave her some honey and it eased her cough. she settled down and i was wide awake. so i listened to the music, the sweet music of my two beloveds breathing while they slept. i was happy. i am happy.

when i woke up this morning, i could not walk. jaun had to take me to the bathroom, help me brush my teeth and wash my face, and laid me back in the bed to get my atrophied muscles "warmed up". ladybug came in to help while juan went donwstairs to cook his wonderful sunday morning pancake breakfast. i watch ladybug quietly, listening to her talk about santa, and the tree, and all the lights. the rythm and music of her voice i love so much. i'm in heaven. and i am so happy. i feel much, much better now.

be well :)