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.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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~
Saturday, May 26, 2007
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.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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"
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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"
Wednesday, April 18, 2007
Week 7 and Week 8
Friday April 6th and Friday April 13th 2007
Rash rash rash. From toes to neck. Started Sat night April 6th and continued to spread over whole body over the next four days with the itch progressively becoming worse as it spread. By this past monday April 16th, it felt like a thousand fire ants were crawling and biting all over. Called docs office at 9:30 am Monday and was told my nurse and doc were with patients and would return my call. By 1:00pm with no return call, i called again and left another message. i hate doctors...wonder why? After 2 unsuccessful calls to get my doc on phone with no calls being returned until 3pm, when some secretary calls back and tells me nurse and doc arent available to call me and are gone for the day, but doc said go to ER, i was a little freaked and pissed. If you know me...i only go to ER if i think i'm dying. May be visiting a lot from here on in, but lots earlier.
5 hours in ER, wrapped in a "butt out the back gown" and a thin bloody sheet 'cause of the two missed attempts to draw blood....3 needle sticks to get two vials of blood, a shot of benadryl and a shot of cortizone through IV and the 3 hour nap that insued.....i headed home dazed and worn out, but no itch. What a relief!
ER doc diagnosed hives from some undetermined allergy. Gave me a prescription for antihistamine and prednisone steroid to take over next 9 days with a slow taper off on the steroid and to follow up with my Gastro doc before my next shot this week. I see him this Thursday and 2:30 pm. Hope he's not going out of his way too much lol.
i am worried about the Prednisone cause its known to cause bone and joint pain, which i already have in ankles , knees, hip and back. But also because it allows virius replication, the one thing i dont want right now. I need to have a 2 log drop in my virius count in order for my insurance company to agree to allow me to continue this $1000 a week treatment. Viral load count was 800,800 per ml at start of treatment, so there can be no more than 8008 detected at 12 week blood test, which is in a month. If i pass the 2 log drop, i get to finish the 48 weeks. So, i want no virius replication at this crucial stage. Tug of war, because i can't rash and scatch with a low white blood count either. and get skin/blood bacterial infection.
i was concerned this was a photosensitivity from the ribavarin or interferon as these drugs can cause sun sensitivity in some patients. ER doc doesn't think so because my face had no rash. my eyes were sensitive to light too and i get pain behind the eye ball. This is gone now after the ER visit. Both interferon and ribavarin are famous for what's termed "riba rash", so i wasn't sure if at 7 weeks the drugs had reached their dreaded toxic level. Most people get a riba rash, but not as severe as i had. This was hives. The slaying continues.......
Rash rash rash. From toes to neck. Started Sat night April 6th and continued to spread over whole body over the next four days with the itch progressively becoming worse as it spread. By this past monday April 16th, it felt like a thousand fire ants were crawling and biting all over. Called docs office at 9:30 am Monday and was told my nurse and doc were with patients and would return my call. By 1:00pm with no return call, i called again and left another message. i hate doctors...wonder why? After 2 unsuccessful calls to get my doc on phone with no calls being returned until 3pm, when some secretary calls back and tells me nurse and doc arent available to call me and are gone for the day, but doc said go to ER, i was a little freaked and pissed. If you know me...i only go to ER if i think i'm dying. May be visiting a lot from here on in, but lots earlier.
5 hours in ER, wrapped in a "butt out the back gown" and a thin bloody sheet 'cause of the two missed attempts to draw blood....3 needle sticks to get two vials of blood, a shot of benadryl and a shot of cortizone through IV and the 3 hour nap that insued.....i headed home dazed and worn out, but no itch. What a relief!
ER doc diagnosed hives from some undetermined allergy. Gave me a prescription for antihistamine and prednisone steroid to take over next 9 days with a slow taper off on the steroid and to follow up with my Gastro doc before my next shot this week. I see him this Thursday and 2:30 pm. Hope he's not going out of his way too much lol.
i am worried about the Prednisone cause its known to cause bone and joint pain, which i already have in ankles , knees, hip and back. But also because it allows virius replication, the one thing i dont want right now. I need to have a 2 log drop in my virius count in order for my insurance company to agree to allow me to continue this $1000 a week treatment. Viral load count was 800,800 per ml at start of treatment, so there can be no more than 8008 detected at 12 week blood test, which is in a month. If i pass the 2 log drop, i get to finish the 48 weeks. So, i want no virius replication at this crucial stage. Tug of war, because i can't rash and scatch with a low white blood count either. and get skin/blood bacterial infection.
i was concerned this was a photosensitivity from the ribavarin or interferon as these drugs can cause sun sensitivity in some patients. ER doc doesn't think so because my face had no rash. my eyes were sensitive to light too and i get pain behind the eye ball. This is gone now after the ER visit. Both interferon and ribavarin are famous for what's termed "riba rash", so i wasn't sure if at 7 weeks the drugs had reached their dreaded toxic level. Most people get a riba rash, but not as severe as i had. This was hives. The slaying continues.......
Tuesday, April 3, 2007
Week 6
Friday Mar.30th.
i had 1 month check up with doc early friday and went over 2 week and 4 week lab results. He is happy with my numbers. Labs look good except WBC has just peeked below normal range on the 4 week ones, which he didn't mention, but i read. i did mention i have been feeling some angry moments,some fatigue,painful joints, rash, but no depression. i go back end of June. Hate docs and tend to tell them whatever they want to hear just to get out. i did mention VX950 trials were coming to and end and things look good on that front. He said "oh i have no idea, you know more about it than me." Shouldn't grastro docs keep up on these things? Like homework?
Had jab 6 friday night. First 5 weeks of tx, i would have 2 or 3 rough days, then feel better. Not this week. So achy, so tired. Sunday, i found out how easy it was to be set off. Went to breakfast with my papa. i'm a daddys girl :) Waitress brought 3 strips of bacon with my eggs that was still oinking so it got sent back to get cooked. Big mistake! Should have sent whole meal back. Lesson learned. Of course i wasn't important, they had lots of breakies to cook and i had already received mine,then complained. So, as par for the course in these matters, they stuck the bacon back on the grill and burnt it (we heard cook say "she's gonna think these are too burnt")and had to cook 3 more slices. Then forgot to bring those until she was asked "when's the bacon was coming." Which of course i was so mad at that point i didn't see or hear papa do. i had already eaten most of the eggs, potatoes and bisquit, while i was waiting for them to fetch a pig. By this time i'm steaming angry. i started talking very loud about how incompetent and stupid they were and what could they possibly be thinking screwing up my bacon. Papa was shushing me. Good thing! all hell was about to break loose. Over bacon! hahaha But i knew i was raging. Will there be a time i don't recognize it or be able to control it? i was sure they were doing this on purpose. Had several urges to fly over counter into kitchen and fry my own damn bacon and also urges to walk out. Lesson learned. Send the plate back and walk out. Not worth the rage when the dumb asses knew i was hungry and really wanted bacon.
i had 1 month check up with doc early friday and went over 2 week and 4 week lab results. He is happy with my numbers. Labs look good except WBC has just peeked below normal range on the 4 week ones, which he didn't mention, but i read. i did mention i have been feeling some angry moments,some fatigue,painful joints, rash, but no depression. i go back end of June. Hate docs and tend to tell them whatever they want to hear just to get out. i did mention VX950 trials were coming to and end and things look good on that front. He said "oh i have no idea, you know more about it than me." Shouldn't grastro docs keep up on these things? Like homework?
Had jab 6 friday night. First 5 weeks of tx, i would have 2 or 3 rough days, then feel better. Not this week. So achy, so tired. Sunday, i found out how easy it was to be set off. Went to breakfast with my papa. i'm a daddys girl :) Waitress brought 3 strips of bacon with my eggs that was still oinking so it got sent back to get cooked. Big mistake! Should have sent whole meal back. Lesson learned. Of course i wasn't important, they had lots of breakies to cook and i had already received mine,then complained. So, as par for the course in these matters, they stuck the bacon back on the grill and burnt it (we heard cook say "she's gonna think these are too burnt")and had to cook 3 more slices. Then forgot to bring those until she was asked "when's the bacon was coming." Which of course i was so mad at that point i didn't see or hear papa do. i had already eaten most of the eggs, potatoes and bisquit, while i was waiting for them to fetch a pig. By this time i'm steaming angry. i started talking very loud about how incompetent and stupid they were and what could they possibly be thinking screwing up my bacon. Papa was shushing me. Good thing! all hell was about to break loose. Over bacon! hahaha But i knew i was raging. Will there be a time i don't recognize it or be able to control it? i was sure they were doing this on purpose. Had several urges to fly over counter into kitchen and fry my own damn bacon and also urges to walk out. Lesson learned. Send the plate back and walk out. Not worth the rage when the dumb asses knew i was hungry and really wanted bacon.
Tuesday, March 27, 2007
Week Five
Mar.23rd 2007
Had fifth jab on Friday and felt best i have since starting treatment. I even thought maybe shot was bad or maybe tx wasn't working, because i had no sides to speak of. Usually i have some aches and nausea over the weekend. Very little to no joint pain this time. However that was short. Starting Monday morning i began to get really bad lower back pain. It's on right side above hip. Tylenol seems to help. I see Doc this Friday so will ask about that. Will also get blood labs copies from week 2 and week 4.I'm interested in seeing those levels, because the fatigue i was having is pretty much gone and seems from what others experience , it should be getting worse. Just goes to show we all respond differently. I am worried tx is failing.
Had fifth jab on Friday and felt best i have since starting treatment. I even thought maybe shot was bad or maybe tx wasn't working, because i had no sides to speak of. Usually i have some aches and nausea over the weekend. Very little to no joint pain this time. However that was short. Starting Monday morning i began to get really bad lower back pain. It's on right side above hip. Tylenol seems to help. I see Doc this Friday so will ask about that. Will also get blood labs copies from week 2 and week 4.I'm interested in seeing those levels, because the fatigue i was having is pretty much gone and seems from what others experience , it should be getting worse. Just goes to show we all respond differently. I am worried tx is failing.
Week Four
Friday Mar.16th - Mar.23rd 2007
Very little side effects from jab #4. Some joint pain in ankles, knees, hips and back which only lasted Sat and Sun. Felt great the rest of the week.
Very little side effects from jab #4. Some joint pain in ankles, knees, hips and back which only lasted Sat and Sun. Felt great the rest of the week.
Friday, March 16, 2007
Week Three
Friday Mar.9th - Mar. 16th 2007
Third jab last friday went well except for the ankle pain i have been experiencing since. Bought some sandals, that are more comfy, yesterday. Hope they help. Tired of hobbling around like an old lady. Tonight will be jab 4...... 44 to go.
Third jab last friday went well except for the ankle pain i have been experiencing since. Bought some sandals, that are more comfy, yesterday. Hope they help. Tired of hobbling around like an old lady. Tonight will be jab 4...... 44 to go.
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