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Viewing 15 posts - 886 through 900 (of 1,060 total)
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  • in reply to: Ariel takes the Plunge #11441
    Avatar photoAriel
    • Guardian Angel
    • ★★★★★
    @ariel

    Dear friends,

    Thanks for the support in my messages re the interferon being given to me in 2012, when the new meds were already known about, when I had full health but for a rash, was surfing four or more days a week, and a career professional. I knew nothing of this illness, was told nothing, was told nothing about peg/inf, was told nothing about sx and well…it ruined me, but mostly when I look back now with education, no fibroscan going in, no liver damage found, the gene testing after and finding the C/T gene anyway, all this done by a different specialist of course…. and the extremely low VL going in…
    I have so far had three surgeries since to fix up things. I developed abnormal lymph cells on tx…I was still detected at 13 weeks and left on it until my heart was at risk at 43 weeks…*sighs* I had no idea and no education and nobody.

    Since that I have done training in Community Service at tertiary level, just too add to my qualies so I know now how to talk the right language, ( I have a Bachelor and done a Masters in my field)

    I became a lobbyist and have spent three years lobbying for thee release of the DAAs. I have read everything I can get my hands on…it has been a crash course in trying to turn this around.

    My stash of letters is very thick, and the frustration is enormous, I have even made phone calls to the CEO’s of the big pharma I didn’t care about the cost of the calls, I care about the cost to our lives….

    I may be on DAAs now, but this is fact. It did happen. I was in a LOT of pain physically.

    It is the last day of Week 4 today. I had my bloods done on Friday as I said. I feel great. yes there are some sx, but they are manageable.

    I think we know so much about the human condition from this illness and these times we have been through, be it a case like mine, or a story of having a liver transplant, like a friend of mine had, which is no party that’s for sure…but they got through, yes they got through.

    I think song from Cinderella sums it up, and yep it may sound’ corny’ but that’s okay too…..
    Love to all out there #love

    in reply to: Undetectable! #11408
    Avatar photoAriel
    • Guardian Angel
    • ★★★★★
    @ariel

    Fantastic Desley
    Congratulations from me
    Big cheer
    Ariel

    in reply to: ‘In which LG seeks Redemption & makes new friends’ #11407
    Avatar photoAriel
    • Guardian Angel
    • ★★★★★
    @ariel

    Dt and LG
    Sinuses : tick agree here sniff sniff
    Lucky though it’s been warm and I am close to the ocean so I just get in amongst it and that annoying fluey sx is controlled, but yep agree another sx glad you mentioned it Thankyou xxx
    bit of a club aren’t we
    Thanks for the updates LG X
    Re movies bit of a score here, Monty Pythons Holy Grail is on TV! Big laughs :)
    Well back to the Knights ha!

    in reply to: No good deed goes unpunished #11404
    Avatar photoAriel
    • Guardian Angel
    • ★★★★★
    @ariel

    Yep such a beautiful story Sonix

    in reply to: Emilio’s Place #11358
    Avatar photoAriel
    • Guardian Angel
    • ★★★★★
    @ariel

    Huge props to the bloke that bought me to this site
    If anyone deserves a great outcome its you Em
    I’m sure your SVR is on the way and that sunshine is gonna light your path from here onwards
    You’ve helped a truckload of people
    I owe you bigtime for your honest blogging in a place where we know the PBS push was creating division
    If you hadn’t stuck your neck out then several people myself and a few friends would still be benchwarmers at the clinic
    Thankyou Emilio
    I hope with all I have in me that you get the SVR
    Big love
    Ariel

    in reply to: No good deed goes unpunished #11355
    Avatar photoAriel
    • Guardian Angel
    • ★★★★★
    @ariel

    And as a footnote
    I’m also trying to help a person Dointime
    It’s like trying to drag a horse to water but it won’t drink <img style=ick:' />
    I just give up!
    Big love
    Ariel

    in reply to: No good deed goes unpunished #11354
    Avatar photoAriel
    • Guardian Angel
    • ★★★★★
    @ariel

    Hey dointime
    Keeping it brief but I totally get this
    I purchased my Chinese generic, had my relevant bloods done and started tx
    Walked into my first liver clinic since last year and the doctor there had a full hissy at me.
    His receptionist also had a full hissy
    And why? Because of his preference for Indian generic yup the exact same medicine
    I was a wreck
    What I would like to know is why has this doctor who I have lobbied for my DAAs even taking a loan to pay Gilead prices against my home at one stage firstly withheld the information he then basically bragged about re his monitoring Indian generics for several months not told me I could have already basically purchased same and now be finished tx, why did he then insist on a repurchase yet told me “oh yes I will monitor you just stay on the Chinese meds and switch when the Indian arrive”
    Stressful, unnecessary, and just not helpful
    So, I now have two lots of meds both the same.
    At least if the worst comes to the worst and I need to extend tx after 12 weeks there are tabs in my fridge.
    All the buyers club meds are legit
    This sort of hoohaa riles me too
    Cheers
    Onwards and upwards
    Ariel #love :+1:

    in reply to: ‘In which LG seeks Redemption & makes new friends’ #11352
    Avatar photoAriel
    • Guardian Angel
    • ★★★★★
    @ariel
    LondonGirl wrote:

    Dear lovely FixHepC friends, Just a (not so) little update.
    Had bloods taken at new hospital (3 weeks into tx) am waiting for full results, but consultant emailed me with the short version :

    VL 515
    Alt 22
    Ast 24
    BILIRUBIN 7
    ALB 41
    Vit D normal
    Thyroid normal
    Kidney normal
    Platelets 144

    I have read with interest others are noticing sensitivity re sad things and I can report am the same !
    I am easily moved to tears, wish to avoid the news, can’t stand shouting, stress etc…but the worst thing is if I experience any sadness it lingers and deeply and can send me into some sort of a depressive state. I have started asking myself hard questions about some naïve choices I made in the past re my choice of partners, there is some self-blame and if I am brutally honest, I need to try and find forgiveness in my heart towards some others. Hard. I am also extremely aware of the time I have spend barely ‘living’ since diagnosis and how my career and personal relationships / friendships have suffered and resentment to the total lack of support this condition offers, physically or emotionally.

    I heard some music recently that has affected me so deeply, the song wont leave my head, I wake up and there it is still going round and round – It is a beautiful, intense, sad song and just the kind of song I like, (also performed by a previous hepper and written by someone who had recently suffered a personal tragedy…;) I feel I need to retreat somewhat at this stage of tx and my instincts are that this is caused by a physical thing, possibly the meds themselves as well as the thoughts and hopes we go through after waiting so long for treatment and the healing process . We will also need to be cautious at EOT I feel.

    Apart from that, I am pleased the VL is heading in the right direction, although now I wish I understood the ‘log’ thing (if anyone should care to explain in short, easy speak ?) I sort of get it, but then with VL 1157 down to 515 with in a week, is this a 1 log or a 2 log? :unsure:

    The other sx I feel I should rather reluctantly mention, is bowel movements and constipation, strange stools etc – Not my favourite thing to publically discuss (!) but after all, we help each other by mentioning no? I have read that taking a Magnesium tab can help – This is also interesting, as I stopped the magnesium during tx as wasn’t too sure if it was an actual ok ? :unsure:
    I took a magnesium last night and it helped this morning (sorry if too much information! – I really do hate sharing this kind of thing)..

    Also interestingly, my lower back pain has returned quite badly – Is it all connected? I always suspected my lower back pain was digestive system, rather than skeletal / muscular – When I mention this pain (throbbing worse at night) I am met with blank stares from Drs – (Why?) This pain was what got me diagnosed in the first place, it was so bad, I couldn’t walk and has been going on for nearly 2 years, although I believe helped to the point of disappearing by previously taking magnesium and havin Epsom salt baths.

    I am generally feeling loads better all this moaning aside :) and waiting for consultants letter with full blood results and advise on when to take next VL test – as I am now past the 4 week mark and into bottle 2, but am thinking not to rush it, my consultant does tests in 3s, not 2s and 4s, can’t help thinking this is the sensible option after reading more and more about Vl testing from you lovely lot on this forum.

    Hoping this long rambling post is making sense <img style=illy:' /> BIG #love to all

    Thanks soooooooo much for this post LG
    I’M EXACTLY THE SAME !
    So my poop yep tick same (agree not the most ladylike topic more Benny Hill than my usual choice of letting off some hot air ;) ) I am also going through self examination and cathartic purges of relationships that were less than ideal, my mood is easily triggered by small things which take me to significant life events that I thought I had dealt with.
    My bones are hurting too and in the exact same body area, lower back hips and radiating to the knees.
    We’re about four days apart in tx and seriously your blog is like my crystal ball.
    I’m so hearing you
    The songs are triggers too I am avoiding things that I associated with the time that I might have contracted this horrible illness, that’s tricky because I am not really sure how I got it, so all sorts of stupid thoughts are being fielded off by my conscious brain. Also, I am suddenly having little panic flashes eg, I went to the hysterical movie called “Sisters” last night and without warning a path report sheet flashed into my conscious from gawd knows where!!!!
    This must all be part of our cleansing
    I can’t rationalise this any other way
    See how awesome your bloodwork is yet this unwelcome fake depressing niggle is popping up
    All I can add to the support here is that I feel like hugging you and if we were closer just basically running amok down the beach and into the sea and going totally stir crazy together to let it all out bugger what the world thinks
    I actually logged in to seek out anything about sore bones and went to catch up with you and BAMMM read what was like a mirror
    Well hunny sending you big love from hot sunny Oz today
    One thing I know about you is you certainly are not in any pity party you are a bright star and I totally think that these sx are chemical and also may well be this virus being slain
    Hugs
    Ariel

    in reply to: FixHepC – Party Playlist #11249
    Avatar photoAriel
    • Guardian Angel
    • ★★★★★
    @ariel

    Hell yeah Pat! Klezmer vibes from da Boss and his gal and crew
    You know I play strings right?
    I went to Fiddler on the Roof last Friday it was a-mazing

    in reply to: Countdown begins for the Magpie #11248
    Avatar photoAriel
    • Guardian Angel
    • ★★★★★
    @ariel

    I’m popping in a photo for you Magpie
    Hoping it is only a minor issue for your tx sx
    :)
    Ariel

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    in reply to: Countdown begins for the Magpie #11236
    Avatar photoAriel
    • Guardian Angel
    • ★★★★★
    @ariel

    Hi Magpie
    Just chirping in with this topic again
    Re washes and moisturiser
    I used Dermaveen for riba rash
    pH 5.5 wash
    Shower and Bath oil after
    They come in a pump pack and helped me
    Basically the doc had to lower my riba dose it was too angry like weeping sores (peg/inf) but these were the most gentle and soothing products
    Moo Goo is a range worth trying too I used their cream
    Hope this helps
    Ariel #flower

    in reply to: isaing4 Twinvir story #11235
    Avatar photoAriel
    • Guardian Angel
    • ★★★★★
    @ariel

    Isiang you are RAWKIN da bloods that is awesome news
    Now only onwards and getting the SVR is in sight
    Such great news and also thanks to Dr James for explaining the bloods and so on yes it’s so different than the old regime and we get stuck the four weeks groove I know I just had my bloods done today at Day 26 and am already being silly with anxiety for no reason :unsure:
    Your bloods are inspiring :) yay

    in reply to: power of 3 #11233
    Avatar photoAriel
    • Guardian Angel
    • ★★★★★
    @ariel

    Fantastic Tina :)
    Moving forward in beautiful Aretorea
    :+1:
    The lobbying you do is fantastic
    Sending warm greetings from Oz #love

    in reply to: FixHepC – Party Playlist #11232
    Avatar photoAriel
    • Guardian Angel
    • ★★★★★
    @ariel

    I’ve been tossing up which Nick song to post for a while, I love Shivers but it really belongs to Rowland (R. I.P.)
    Door Door was an insane debut album I think but I have chosen something else :evil: :P
    Before Nick the Stripper ha! Nice suit Mr Cave

    http://youtu.be/17iJYitcWnE

    in reply to: FixHepC – Party Playlist #11231
    Avatar photoAriel
    • Guardian Angel
    • ★★★★★
    @ariel

    That was amazing 2b
    Fantastic thankyou love love :+1:
    Can’t go past White Room Pat
    Love this chillout room here #flower #flower #flower
    Another goldie oldie we all know from the archives

Viewing 15 posts - 886 through 900 (of 1,060 total)