Week 40-44

Did you know i am smelling roses not roots,
i keep my dragon fighting hat close at hand.


hardship makes you learn meaning tx tx is hardest thing i have ever done physically not day to day but 11 months unrelentless issues is tough well the thing is tx affects your brain i didnt really believe it you know part of you is watching from the outside, the sane part and it sees the crazy part do stuff and the sane side feels helpless nothing it can do but the thing is if it wasnt for the nutso aspect and brain fog, no one would last 11 months it wipes out certain memories almost they are there but so unimportant cause crazy takes center stage, i think it really helps however theres no total break the sane side doesnt completely go, it stays in background, thank God honestly i think this is what scitzsophrenia must be like ,well thing is its not on a daily basis moments are fleeting but they come i never feel in big danger like the short term memory thing well i know how i felt before tx that memory hasnt gone about my life. needs, joys, wants, health tx gives me a longer future maybe better, doesnt necessirily change it oh very mortal not about dying but how one dies we all die there is a man was having back pain for months scrugged it off finally went to docs has baseball size tumor on spine, inoperable doc says 1 month to live entered hospice friday the pains bad he has no wife and kids but a mom and sister his goal? to not die at christmas time and ruin their thoughts of the season he is 35 thats what i mean its not the dying but the how that tx brings to the forefront of our future i have never been afraid of death i know a lot of people who died personally not one has had a complaint ha ha ha no never contemplate it but i think before tx i really never thought of my death death obsessed things always but not my own no never i have jokingly said bury my ashes in the back yard but i have no concerns about where my dead flesh goes after i want to start a support group, did i tell you about that? right real life . the biggest thing people on tx need is support all my life i have never felt the need for other people too much one thing i have learned on tx is that it is absolutely the most critical thing i didnt choose not to go that route there are no live support groups in this area or i would have been there my thoughts is it is really needed there are those with NO support if i can give that MT would be very happy its a way to give back something yes the MT inside me and i may not get SVR or i may people can benefit either way

Week 27-39

Whew time flies when you having fun. If you believe that, i have some land to sell you down here in Florida! 9 weeks of tx left woooo hooooo. Single digits. Never thought i'd get here and now of course it seems like the months have flown. I am still working, although only part time. I have some usual fatigue, but not too bad. Healthy these last 12 weeks, all except this Godforsaken ugly extensive itchy rashy hives I get. I am still being followed by my dermo especially since the cortisone shots no longer keep my hives at bay. He who now thinks it maybe cutaneous vasculitis and has sent me for all sorts of blood work ANA, C3, C4, C50, sedmentation rate, immunoelectrophoresis, protein Electrophoresis. Basically the rash seems to be an allergic reaction to something, maybe even INF or Ribavirin. This isn't a riba rash. I have that too on my back and arms, but it's a joy compared to the hives on rest of body.

Week 22-26

Week 24 PCR UNDETECTABLE Yippy!
Pretty sick last week. Had severe dizziness that gave me bad nausea. Just didn't want to get out of bed. Fatigue was really bad too. Missed 4 days of work. Doc gave me meds for dizziness and nausea, which seems to be helping. Thought maybe i had picked up a virus or maybe had some ear equilibrium issues or both, doesn't really know. i feel much better this week. my hemaglobin at week 24 is 13.5. Doc is amazed and so am i, because i'm just so utterly fatigued. He said "if you didn't tell me you were taking your meds and i didn't believe you, i'd say you weren'ttaking them, because your labs are so good for 24 weeks, usually people are very anemic at this stage" Trust me, i take every little stinking pill, every single day. Only my white and nuets were below normal , but not too bad. i know i am lucky.

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.


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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"

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.......

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.

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.

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.

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.

Wild Ride

up until recently, year or so ago, i was the most co-ordinated person you ever met. i could juggle 5 things at the same time with out thinking twice. Throw a 3 course dinner together where every thing was done at the same time....Then.... it started to seem like i became really clumsey. Trip over cracks in the side walk, drop stuff, spill food. I chalked it up to just getting older, not paying attention and maybe not caring. Almost funny to a point, when i would slop ice cream down my shirt.

This morning i realized, on tx, there's a WHOLE new meaning to messy and uncoordinated. i have been having some brain fog and forgetfulness. i have to really concentrate sometimes when i am doing stuff. Literally putting one foot in front of the other and truly thinking through the steps to get something accomplished successfully.

~6:45 am in kitchen~
i had just puked the first cup of decafinated coffee....woke up feeling nauseous and gaggy and decided to get it over with, and did the deed, then got dressed for work. i placed a cup of water in micro for 2 minutes and stood there waiting for it to be done. In the meantime, i started to think how before tx, i could make toast at same time water was heating. But, ohhhh nooo not now. One thing at a time. i get the water out, set it on counter, put the package of cocoa in and i'm stirring and thinking time to locate the bread.....crash!!!! cup tips over. I WASN'T even touching it!!!!! Cocoa all over the counter, running down the dishwasher, my work clothes and the floor! Spent the next 20 minutes slopping up the counter and floor with gobs of paper towel, wiping down the dish washer, mopping the floor, and changing clothes...and started all over again. Finally ate a slice of toast,drank a cup of cocoa, glupped down 3 Ribas with my water and rushed off to work.

i debated if i was really capable of driving and getting to work safe. Except for blocking one intersection, when traffic stopped in front of a fire department, which clearly had a sign "Do Not Block Intersection", i made it safe. i chalk that up to automatic pilot. After i had been at work an hour, i looked down at my painted toes sticking out of my shoes and realized i had little brown spots of cocoa stuck to my nails. Sheesh. THEN worst of all, i noticed i am starting to grow hair on my toes! So let me understand this....tx is gonna cause my hair on my head to fall out , but i'm gonna GROW it on my toes???!!!!! No damn dragon is gonna call me a troll. He has a butt kicking coming!

Feb. 20th,2007

i have decided to journal about the next year of my life, in hopes of maybe someday helping others who may find this blog. i have chronic Hepatitis C Virus, also known as "the dragon". i am about to start on a 48 week journey, taking the FDA approved combination of interferon/ribavirin medications known as:Pegasys + Copegus.
The Pegasys will be a once a week shot that i have to learn to give myself and the ribavirin will be pills i have to take twice a day. Both can have side affects ranging from flu like syptoms, headache, fever, rashes,hairloss!!!!!!, sore joints, anemia , low white blood count,depression, rage etc etc..Hopefully i won't have any side affects.Because this is a disease that silently and slowly distroys the liver, over a period of years, my doctor has recommended treatment.
I was first diagnosed in Oct.2001 . Two liver biopsies, 5 years apart, showed no fibrosis. HCV is contracted through blood contact such as blood transfusion, iv drugs, tattoos. piercings etc. i had a tattoo in 1996 at a very busy bike week in Daytona Beach, Fl and a belly button piercing in 2001. i went to the doctor complaining of fatigue in 2001 and blood work showed i had the virus. i believe the belly button piercing was the source of infection because it coinsides with the fatigue i was having that brought about the diagnosis.
My doctor decided to wait on treatment hoping a better drug would be FDA approved. Pegasys+Copegus only has a 37% cure rate for genotype 1 ,which is taken for 48 weeks, which iam. Genotype 2 and 3 have a better success rate and is only a 24 week treatment. But i am a 1. Lucky me. Currently there are several drugs in the pipeline in various stages of testing, but no FDA approval yet. At my last blood work, some of my liver function levels had become abnormal, so we decided it's time to treat now. AMA has recommended all HCV possitive people should start treatment regardless of severity.



Feb. 21st, 2007

Took the day of from work today to await the UPS shipment. My dragon killing hypodermics arrive today and someone has to be home or they can not deliver. Can't leave hypodermics laying around . Should be 4 prefilled syringes and the ribavirin pills. Day off sounds great. i have been soooooo tired. i suppose i am mid flair up of the virus because i have been so fatigued lately. Ha and they say it's symptomless! It was just such an episode of fatigue that took me to my doctor in 2001, which led to blood test and the discovery that i was possitive for HCV.


Feb. 22nd,2007

Dragon killer is in refridgerator. i will take one syringe to docs tomorrow to learn how to administer. My love will go with me. Altho i will have to learn how, hopefully he will too and be able to give me the shots on Fridays. i am doing on Fridays because that gives me two days to start feeling better from flu symptoms the meds can cause, so i can maybe go to work on Monday. So much for TGIF. Gonna be a rough night trying to sleep.


Week One
Friday Feb.23rd - Mar.1st, 2007

i went to docs office and learned how to give myself a shot. It was easy. i was worried for nothing. Needle is very small and i could barely see or feel it. So, first of 48 happened about 130pm. Around 730pm, i started feeling pretty bad. i was having pains in my lower back. Muscle pain and achy like flu aches. i could feel as the aches moved slowly up my spine until it reached my neck. Then they started at both shoulders and hips and moved down my limbs, Fast! ...... i felt them as they moved a long, so odd. Next i started having fever and chills at this point. The chills were the worst. i was shivering and no matter how many blankets i used i still shook. Felt awfull for the rest of that night. i woke up every hour it seemed. Finally after some sleep, i woke up and flu was gone. Felt somewhat dazed from the whole ordeal , but rest of weekend i felt pretty good.


Week Two
Friday Mar.2nd - Mar.8th 2007

Had my second tx jab last Friday around 6 pm. Fell asleep and woke up around 9pm to take the riba. Took two tylenols then and pretty much went back to sleep. I think that may have been a good plan, because just about the time any sides would have kicked in the tylenol would have too. I had no side effects like last week with jab one. No flu, muscle pain or fever. Woke up Sat and enjoyed the weekend. i do notice this week that i am feeling really tired and have some rashy itchyness. Left work yesterday at 2pm and went home and crawled into bed. Just exhausted. i do two week lab work tomorrow and will have jab 3, hope it goes as smooth as jab 2.