Monday, January 28, 2008

48 weeks done!

WOW! It's over. 48 weeks of HCV treatment. Did last interferon shot 10 days ago and took last of the 1680 ribavirin pills last Thursday. Sometimes i doubted i'd make it through treatment. What a rough trip. Now i am in the SVRL = sustained viral response lottery. Will i be one of the 50% who killed the virus? i'll know for sure in 6 months to a year. The time frame that it rears it's ugly head if treatment failed.
Today is Monday and i feel different already. You know how everyone hates Mondays. They are blah and most feel should be abolished as a work day. i will never feel that way again and be happy for that normal blah Monday. This is the first Monday in 11 months that i'm not trudging in to work sick, feeling nauseous, weak as a new born kitten with my head pounding.
Fridays were shot days. That left me hyper on Saturday. Manic really. i felt great most Saturdays and wanted to pack in a months worth of things to do. Up early and rearing to go and i did. Sunday i paid the price with extreme exhaustion, throwing up and feeling half dead for over doing it on Ssturday. Most Mondays it carried over from Sunday where i half recovered from feeling so sick and wiped out from the Sunday ordeal. You'd think i'd learn and slow down on Saturday? i couldn't. These powerful drugs dictated my life and my moods. i went with the flow each week even though i knew the pattern and could do nothing but go with the flow.
i oftain thought i should have changed my shot day to Thursday. Have a great Friday and then have Sat/ Sun to recover and be better for work on Mondays. But no, i decided having a great day Saturday, my one decent weekend day, was a better plan and stuck to my schedule of Friday for shots. Plus B gave me my shots on Friday and i would have had to do myself if i had switched to Thurdays for shots. i can do, but hated giving them to myself which i had to maybe 3 times.
Many Mondays on treatment, on the way into work, i'd do a once over of myself on way to time clock to make sure i hadn't forgotten to dress or forgot my shoes. Monday were that bad. I didn't have to check today lol. I feel great! Little ache in my ankles . knees and hip bones, but nothing like the last 48 Mondays :)
Thank you to my papa B, who without, i would never have made it through treatment. That's no lie. i'd have ditched this crappy treatment on week 8. He was my rock through treatment. my icing. Thank You so much. He got me focused on my long term health and goals, when days got so rough, and continues to do so

Sunday, December 23, 2007

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

Tuesday, November 20, 2007

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.

Wednesday, August 22, 2007

Week 22-26

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.

Monday, July 16, 2007

Week 21

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.

Monday, July 9, 2007

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.

Monday, June 18, 2007

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!