Week 21

~waves~
iam still alive
Barely got out of bed this past weekend. Treatment takes a toll on my energy. Saturday i was weak and nauseaous. Sunday extremely tired to the point of not wanting to move. My blood counts are going downhill slowly, but still in range, except for my white count. So just taking things easy. Going to the bathroom and back is like running a marathon on weekends. It's about all i can do to get to the finish line. Saturday and Sunday are my worse two days. Saturday i am plain psychotic, including bouts of paranoia and feelings of abandonment. The abandonment is me thinking i'm so misirable, why would anyone want to be with me. i have good support and really not need feel that way. Good thing that only lasts a day. Sunday i'm exhausted from being crazy on Saturday. Then my week starts all over again and i go to work the next 5 days. i do my shots on Friday so i will be home for the two bad days i get each week. Continuing to work has been a big struggle, but i do it because if i was home i'd stay in bed all day. That can't be good for anyone. Hopefully i don't get to that point but if i do, i do. If i never get out of bed i couldn't survive tx. i have to push myself to do it. Oh i came to work today, grabbed the back of my hair and snipped off 5 inches. Hair is now few inches below shoulders. i couldnt stand how straggly it has gotten. It has been coming out so fast that i decided i could have less tugging each morning if it was shorter. It's very curly so lots of tangles. Less length should help with the snarling and snagging of my comb. i go today to a retina specialist to have a dark spot checked near my retina. Found on a routine eye exam last week. Wonder what's next. One day at a time.

week 20

i'm irritated. nothing in particular, i just am. maybe tired of being sick and tired of being sick and tired. i suppose that's good... in that it means i'm not dead. Has anyone ever died from stagnation...a slow wallowing in the mud like a pig, day after day, nothing productive, nothing creative, just exsist, just are. no motivation. No energy. Take it or leave it, who cares, wake up tomorrow and do it all again, trudge on.

week 17

Wow mid week 17 already? Times flying! Will be half way there at week 24 before i know it! Maybe i'm having to much fun playing with my man (he is so cute, lovable, sexy, sweet, kind, gentle, perrrrfect.....wanna puke yet? hahahaha) to notice the weeks flying by. Of course i come to full attention when the pain deep in middle of my right thigh bone seems to scream at me :) one ring finger on right hand and one toe on right foot throbs too. I get the strangest symptoms in the weirdest places. And oh yeah, the hair, thats another story. May let him shave me bald and put in some long dangly earrings like Sinead O'connor NOT!

Week 15 and 16

Everything is going really well. No rash, rage, depression, illness that i experienced early on.i do have some bone pain in feet and ankles still, that gets bad day after shot and some fatigue that seems quiet managable, but all in all i feel great.

So Happy

UNDETECTABLE

Week 13 and 14

tic toc tic toc...... still waiting for PCR blood work that was drawn last friday, end of week 12. WAITING DRIVING ME CRAZYYYYYYYY! Week 13 was uneventful except for the bone pain in ankles and feet. Did jab 14 last night and it bled a lot. i think i hit a blood vessel. Also forgot to push air bubbles out of syringe first.


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i had to step into the jungle just to get my solitude.

i need some juju and i don't know what to do.

i'm tired of seeing clouds when all i need's a drop of rain.

i've got my cuts and bruises, now i'd like to feel the pain.

if the spirit moves you,

if the spirit moves you,

if the spirit move you ,

please won't you, please wont you, send her to me.

well, how do you do that majic?

whats the secret?

whats the spell?

i tried to work it, but i just can't do it well.

i know i'm lucky to be in the jungle doing what i please.

i got my birds, i got my buds, i should just get down on my knees

pleaseeee

if the spirit moves you, if the spirit moves you

if the spirit moves you ,please wont you send her, please wont you send her, please wont you send her to me

send her to me, send her to me

~The Woods Brothers~

Week 9, 10 11, 12

Rash returned 4 days after i stopped the Prednisone. Headed to Gastros office, who sent me to a dermotologist. Dermo not sure the cause,i'm allergic to something, but would help me manage, so i can continue tx. He gave me a shot of cortisone, which will last 7 weeks ( i will repeat every 7 weeks ) and prescription for daily antihistimines, which is now keeping the reaction at bay. Had my 12th jab Friday May 11th and will have the 12 week PCR blood work at the end of that week,Friday May 18th, that checks the viral load in my blood. This is the big week. i have to be undetectable for the virus in order to continue tx. Those who aren't undetectable at 12 weeks have a 2% chance of clearing the virus, if continued. So doesn't make much sense because of the side effects and with those odds, insurance won't pay. If undetectable, i have a 37% chance. So sitting , waiting, praying and hoping i get to continue.

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Sitting on the front porch

ice cream in my hand

melting in the sun

all that chocolate on my tongue

and thats good enough reason to live

good enough reason to live.

sitting in the bathtub

hifi playing low

digging ole Al Green

well you must know what i mean

thats good enough reason to live

good enough reason to live

if i die young

at least i got some chocolate on my tongue

if i die young

at least i got some chocolate on my tongue


sitting in the front seat

good girl in my arms

smiling in my eyes

getting me all hypnotized

and thats a good enough reason to live

good enough reason to live

if i die young

at least i got some chocolate on my tongue

if i die young

at least i got some chocolate

chocolate on my tongue

if i die young

at least i got some chocolate on my tongue


"The Woods Brothers"