Positive attitude… under strain

While I try and remain positive about my RA and how I deal with it, the last few weeks have really started to grind me down.

I contacted the surgeons secretary a few weeks back about how my knee had deteriorated, and after a chat with her explaining the last 12 months, she said she would speak with the surgeon and see what she could do and then get back to me. As yet I’ve heard nothing, and my next scheduled appointment with him isn’t until 23rd May.

This appointment is essentially to check on the foot op I had last October, which is currently causing new problems. As they didn’t straighten the big toe at the time, and now I have the metatarsal head protruding through the sole of my foot from the toe they popped the pin in to straighten it up and the big toe is almost at a 45 degree angle.

I saw my rheumatologist on Wednesday who had to rush off to a meeting, but asked me to get an xray done of the knee and he’d report back on what they can do. As yet I’ve heard nothing, and will phone tomorrow and see if I can get any news or information on what the plans are.

It’s starting to look like I can virtually write off 2008, if the results of the xrays indicate the joint is crumbling (which my rheumatologist suspects) then my knee op would be a priority case. If however it isn’t, that means by the time I see the surgeon in May, and a 6 months wait on the list, that takes us into November and 2008 has gone by with me stuck in these 4 walls.

As I said I do try to be positive, but sometimes even the most upbeat person can be ground down by things.

Great evening out

With the ongoing knee problem (see below) getting out of the flat is something I’ve not done much of the last few months. but tonight I had a lovely evening out with my friend Steph, who celebrated her birthday on Sunday.

So it was meet up for a Mexican meal with Kerry, Maxine, Clare and Russell, Steph and myself, a really nice evening out and a good giggle. The food was slow in coming, but was good when it arrived. I enjoy chicken fahita, even though they weren’t quite spicy enough for my liking.

A really enjoyable evening made even better with great company :)

Now it’s time to hop off to bed (literally) as I’m knackered and my knee is really complaining.

Between a rock and a hard place

I was at the hospital today to see my rheumatologist for my 6 monthly routine check up, big thanks to my friend Steph for taking me over to the hospital. My rheumatologist saw me struggling to walk even with the aid of my elbow crutch, he had an important meeting and was going to leave me in that hands of one of the other Rheumy team members. I asked if he could spare a few mins to look at my knee, as he knows that it’s been giving me trouble on and off for well over a year now.

He looked at the swelling (my right knee is three times the size of the left one) and asked if the majority of the pain was in the inflamed area, I told him that it wasn’t and it was in the lower half, and slightly to the side. He concluded that draining the fluid and putting a steroid in wouldn’t have any benefit, in fact it would delay the knee op I so desperately need right now.

So armed with a form for a new xray, I headed over to get some xrays of my knee one of which was a weight bearing one. As my rheumatologist had to head to his meeting, he said he would look at the xrays first thing tomorrow and would phone me with the descision. He thinks that the pain is due to the joint crumbling, and if this is the case it would make my knee replacement a priority treatment, so I’d have the op sooner rather than later.

So while I’m hoping that the knee op will be soon, the thought of my bones crumbling is a bit scary, but the pain in unbearable at times, having to lean on walls to get round the flat, and really struggling with even basic tasks like making a cup of tea really drain you both physically and emotionally.

we’ll see what he says tomorrow.

Safe Trip!

Just a message to wish my friends Steph and Maxine a safe trip home after a holiday in Florida, and make sure you both have some warm clothes for when you arrive back home :)

Phorm’s spin machine comes to my blog.

Well I had a surprise this afternoon, when I logged in to make a new entry, I had an entry awaiting moderation which you can find under web creator attacks Phorm. One of Phorm’s three PR firms trying to reduce the damage to the SPYWARE company.

I will respond to the points he makes (my replies in red)

When he states he’s from the phormcomms team, he probably means he’s from the PR firm Citigate Drewe Rogerson.

Firstly, Webwise is not malware. Users are continually given the choice to opt out and the very first thing you will see when you go online after the technology has been deployed is a full-page notice and at that point you can decide to opt out. You will see banner ads saying that Webwise is on. So if you don’t want it, you will be able to click on these ads and switch them off.

Webwise is created by Phorm, a company who were previously called 121 media and responsible for some pretty nasty rootkits/adware.

Users will be able to opt-out of Phorm’s service. However, according to a spokesman for Phorm, the way the opt-out works means the contents of the websites you visit will still be mirrored to its system.

Source: http://www.theregister.co.uk/2008/03/05/bt_phorm_trial/

Want to opt in to Phorm? Welcome to the world of complicit behaviour. If you opt in you risk the chance of committing a criminal offence yourself for initiating a communication which you know is going to be subjected to interception. Your ISP will be making you a criminal.

Secondly it’s not illegal - we don’t agree with FIPR. They offer one view on a piece of the law that is untested. All of the legal advice we’ve taken and conversations we’ve had with various experts on DPA and RIPA support our position that our system complies with all the appropriate laws.

You’re right Phorm is not illegal under RIPA if you ignore s2 and s3 of the legislation; which conveniently happen to be the pertinent sections of the legislation with regards to protecting the HUMAN RIGHTS of the public with regards the right to privacy in our private lives and communications.

However, since we have been told time and time again that IGNORANCE of the law is no excuse in the eyes of the courts, if they continue to IGNORE s2 and s3 we will jump on their every move and push harder and harder for criminal charges to be brought against Phorm and the Agent ISPs.

Rest assured, the secret trials by BT last June were criminal under RIPA and any deployment of Phorm -anywhere- in the UK would be equally criminal for as long as Regulation of Investigatory Powers Act 2000 exists in it’s current form.

Lastly, Sir Tim Berners Lee is not familiar with the Phorm system, so he did not know that his example is impossible with our system (in the BBC story: http://news.bbc.co.uk/1/hi/technology/7299875.stm). There is no match to ‘sensitive’ areas such as medical conditions, no record of what sites users have visited, and no data of any kind is passed by the system to a third party (in his example to insurers).

Your claim that Sir Tim’s example was impossible, from Phorm’s own patent it’s perfectly possible, we only have Phorms word that they won’t, and frankly with their history in the malware business I wouldn’t trust them as far as I could throw them. And in a piece about Phorm in the New York times one of Phorms very own members of staff says the following.

“The company, called Phorm, has created a tool that can track every single online action of a given consumer, based on data from that person’s Internet service provider. The trick for Phorm is to gain access to that data, and it is trying to negotiate deals with telephone and cable companies, like AT&T, Verizon and Comcast, that provide broadband service to millions.

Phorm’s pitch to these companies is that its software can give them a new stream of revenue from advertising. Using Phorm’s comprehensive views of individuals, the companies can help advertisers show different ads to people based on their interests.

“As you browse, we’re able to categorize all of your Internet actions,” said Virasb Vahidi, the chief operating officer of Phorm. “We actually can see the entire Internet.”

Source: NYTIMES

We look forward to speaking to Tim Berners Lee to explain how our technology is a ground breaking advance in delivering targeted ads while protecting privacy online and consumer choice, as we have with other experts.

As Sir Tim has stated I DON’T want targeted adds, the data I send between MY computer via my ISP is MINE and is NOT FOR SALE.

I’ve deleted the links from his post, as I don’t want any links to spyware companies on my Blog. I’d like to protect my friends and their private information.

My thanks must go to Alexander Hanff for his help with this reply :)

Sometimes….

You get an email or see a blog post from a friend that really makes your day. I’ve just read my friend Becky’s latest blog posting and it raised a BIG smile. Of course I had to phone her and have a chat about things :)

So now after the chat, all I can say is that it’s wonderful news and I hope she has a wonderful summertime :)

Big smiley Jo.

Phorm’s theme tune “Don’t like Mondays?”

Everyone’s favourite malware peddling company Phorm has had a bit of a bad day. Over the weekend a BT staff member revealed on the BT forum that they HAD trilalled the system last summer, despite telling customers it was a malware issue, this could open the doors for BT to end up in court.

The Register who didn’t hesitate on letting the IT crowd know :) http://www.theregister.co.uk/2008/03/17/bt_phorm_lies/

Then this afternoon Phorm got another kick in the balls when the Foundation for Information Policy Research (FIPR) advised that Phorm is illegal

http://www.theregister.co.uk/2008/03/17/phorm_fipr_illegal/

And even the Phorm loving BBC have suddenly woke up and started reporting the facts
http://news.bbc.co.uk/1/hi/technology/7301379.stm

And here’s the open letter from FIPR
http://www.fipr.org/080317icoletter.html

Hopefully Kurt will be crying into his beer and have “I don’t Like Mondays” by the Boomtown Rats as his new company feeme toon :)

Web Creator attacks Phorm

The growing campaign against Phorm and it’s advert peddling spyware have come under fire from web creator Sir Tim Berners-Lee.

Sir Tim has launched an attack on people privacy while online. Until this event the BBC were playing the effects of Phorm on civil liberties, but suddenly they’ve changed their tune thanks to Sir Tim

http://news.bbc.co.uk/1/hi/technology/7299875.stm

And I’m sure the weekend revelation in a BT forum that they did a trial of the Phorm system last year, even lying to customers informing them they had a malware infection.

Be interesting to see where this goes now. And congrats to Sir Tim for speaking out on the subject.

Phorm spin machine gets spanner in it’s works.

As the internet continues to rumble with Phorm’s inability to answer specific questions, instead of banding about “ohh but man we paid from big company said it was OK” a new post on the Register (which seems to be the only place that truely realises the implications of Phorm) has told us that 2 of the leading anti malware /spyware firms have labelled Phorm’s activities as Adware.

http://www.theregister.co.uk/2008/03/12/phorm_av_vendors/

Wonder if the BBC will now take off the rose tinted glasses and report the truth on this issue. (ooh look a flying piggie!)

Lesbian Bed Death gig dates

Lesbian Bed Death have announced the following gig dates.

13 Apr 2008      20:00 LA Rock Cafe      Lichfield, Midlands
17 May 2008     12:00 GODLESS 2008  Stoke-on-Trent, Midlands
18 May 2008     19:00 Satan’s Hollow     Manchester, Northwest

I can’t get to any of em with this damn knee :(

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