TOPIC:

Hi Debs thanks so much for your popping by
I was stoked to read how you're travelling
I'm feeling tired at the moment its good to let my body rest
Some of the stress in my life which has snuck in via the HCV brain alley is being removed as my clear thought and articulate voice returns
I'm really quite surprised at just how everything is starting to fall into place
I remember explaining my feelings by likening my life to a big jigsaw puzzle which I could do but although the pieces were the right ones I just couldn't slot them into their positions
Well they are slotting in now one by one
Some of that's easy and some a bit confronting as I work through my big picture
Moving forward I am looking forward to working again, possibly will need to sell up my home too, hopefully can wait until after tx, and downsize a lot.
Only can be better as I move along the track to wellness.
And here is one of my anthems and credos
Again it's from a surf culture Film
The famous Morning of the Earth
This is Simple Ben

Lovely relaxing track Ariel, played it while I'm doing a bit of work, but kept looking at the video, kept thinking of the phrase " in your element." Looks great..........

Debs

Morning of the earth, what a blast from the past, thanks for the song!

Ah Ariel, brings back good memories, thanks for that.

A better time, a happier place.

x

Thanks Magpie and CJ and Debs and other friends
What a superb soundtrack for a film it's really my favourite so grounding and uplifting all at once
Up too early here a lot going on. Also it's probably a good day to get my bloods done I am day 26 and see clinic next Friday with a bit of a push my VL might get through in the week....
My hair and skin are really great and I have put a kilo on its not huge but its a sign
I think a lot of HCV patients have to deal with stressful lives oh well it's going to be okay clearing not just the virus but other unhelpful things are part of healing .......
I may as well pop in for the bloods today a bit early but I can't wait any longer
Not much else to share just fatigue in my bod, a bit of pain not too terrible
Probs the legacy of peg/inf nothing to do with this tx anyway
Have a great weekend friends
Splashes
Ariel

Woohoo
Bloods done


And now for a song to capture my mood:

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

You know I really think that the specialist who did this to you should be prosecuted for grievous bodily harm. That level of neglect needs to be legally addressed.
I wonder how unusual your case is too...possibly scope for class action.

You know I really think that the specialist who did this to you should be prosecuted for grievous bodily harm.

don't know why this posted twice, a bit tired this side of the world maybe

You know I really think that the specialist who did this to you should be prosecuted for grievous bodily harm.

The question is, "why"??

Although my 3rd specialist experiences made me ask the same question, I was not so physically harmed by his actions and was more informed than Ariel was at that point. However, I wasn't always that way when first diagnosed, again like Ariel, I was in shock and very vulnerable. I have also read and read since then and when I witnessed my consultant telling lies in person and later on paper, I can still only ask the same thing - Why? Is it a bullying thing? Arrogance? Power trip? Misogynist? Personal dislike? What is it that makes someone who is paid to care for you, as their job, do such a thing? I came out of mine less physically hurt than Ariel, but had emotional distress which really doesn't help untreated patients as I'm sure many of you know well, but for sure Ariel, he needs to answer some serious questions. I will be reporting my old 'specialist' once treatment is over, I think you will too? I am going to leave it until at least 12 weeks post EOT as I see it as a negative during treatment. This time is for us, the patients and we need to concentrate on getting well, don't let that man take anything more away from you. Go get him when you are better and stronger.

Well done for posting this, I hope some consultants and specialists read these posts and I hope you're writing thoughts down in your new giant notebook You could even print out your post above. Much to you dear Ariel, so glad you've been getting out and about, surfing, gardening and mowing lawns (I cannot imagine dead-heading flowers with the howling wind and rain at my window!)

Week 4 already !
Yes, we have all had to be incredibly strong, but now we are softening as the medicines work on us .. hey?
Still, we won't be putting up with any more of this crap from any Drs we may see in the future
I had the great pleasure of saying to Dr no. 3 (the 1st one didn't show up to appointment and the 2nd retired) - "No, I'm sorry, that just won't do ".

Well done for this post Ariel

I think it is a systemic issue. I have had good LFTs for a long time now, and low viral loads, and yet I was offered Interferon by my GP. Admittedly at that time there wasn't an alternative, but still, for someone who is essentially not sick, to poison them like that is crazy!
I think the system encourages practitioners to dehumanise patients, and it also encourages and rewards those who are already psychopaths in so many fields.
I guess as a very low income artist I have been exposed to so much beaurocratic cruelty over the years that I am automatically suspicious of everyone. Its totally endemic in the system that caters to the sick and the poor.

However, I wasn't always that way when first diagnosed, again like Ariel, I was in shock and very vulnerable.

And that's the trouble. None of us are clued up when we're first diagnosed. I was completely stunned for some time, outwardly normal but inside like a zombie. That is the exact time when something bad is most likely to happen, simply because you don't understand what is going on and you have to trust the people appointed to your medical care to do their jobs. As we've all found out, that's a lottery.

I wasn't unduly harmed. That was mostly luck. On the downside, a lot less was known about 10 years ago, so a lot of suffering happened because nobody knew any better. But by 2012 they did know better. I think that any doctor who prescribes interferon nowadays without first doing genetic testing of the IL28B allele is negligent in their duty of care. Yet this is still going on all across the UK. I got my own genetic test done via the '23andme' website. Oh yeah, by 2012 I was clued up. If you are a CT or a TT then interferon is not suitable for you. That is grounds for demanding treatment with the DAAs.

Completely agree with your post LG. Mop up the virus first. Mop up the bastards next. Clean out the whole damn house.
dt

Well you really nailed it in your that post Ariel It heightens our understanding of the reality in life of tiptoeing on the edge. It is unfortunately true that there are some medicos that cannot be trusted or who are completely so inefficient and incompetent they plainly shouldn't be on the job. 40 years past I learnt the hard way about trust and naivety. I lost my beautiful daughter as a result of medical incompetency. Realising and understanding this has assisted me with regard to decisions I make for well being. I now always second guess and question any announcement, prediction or medical process as you do now. I didn't take up the offer of interferon treatment on numerous occasions as I quite frankly didn't think I would survive.

You are a tough cookie and a wise one. Online you sound so lovely and have such an all encompassing, vivacious spirit.
Legal proceedings are something else and from what I have observed by previous experience again that there is a need err on the side of caution and mostly be strong and give yourself time. I do absolutely think that you have a case and I wish you well and strength.

and yes this is different I think Fixhepc is an alternative choice and a good one
sorry, I do believe this is a

Thanks all for your support
To Pat1 a huge hug
That's the hardest to bear and you alone would know the truth of that
I'm on a rest day
I used to really grieve on these stay in bed days but on these DAAs I only have to do this occasionally and I see it as just balance
Letting the body restore and renew while slaying those nasty dragon meanies
Big love
A

Oh Ariel I had no idea how you had suffered....I'm so sorry. At four weeks already......you will be a new person woman! Good for you taking on the system.

Pat I am so sorry for your loss.

Those on this Forum are so strong and I admire each and every one of you.