Creative Challenge 2012

I had a moment of despair today and a friend suggested a project that just GRABBED at me:

"I have an idea that you could so help me with id like to start changing the view of sick people fed up of the scrounger crap

The idea is simple: People send photo's doing something they love, work, play, make, think, whatever and make a collage of them."

The first thing that came into my head was the song from The Sound of Music "My favourite things" So I thought, Why not make this into the photo project ?

Everyone submits a photo of their favourite thing to add to a collage of HAPPINESS !!

Raindrops on roses and whiskers on kittens
Bright copper kettles and warm woollen mittens
Brown paper packages tied up with strings
These are a few of my favourite things

Cream coloured ponies and crisp apple strudels
Doorbells and sleigh bells and schnitzel with noodles
Wild geese that fly with the moon on their wings
These are a few of my favourite things

Girls in white dresses with blue satin sashes
Snowflakes that stay on my nose and eyelashes
Silver white winters that melt into springs
These are a few of my favourite things

When the dog bites
When the bee stings
When I'm feeling sad
I simply remember my favourite things
And then I don't feel so bad

 Credit: lyrics from The Sound Of Music soundtrack and film.

Then we will create a new version of the song, especially for us, with the pictures submitted. 

Are you interested in taking part ?  Tweet me @fibrography or  @fibro_girl and let us know you are interested.  Then send us your pictures with a caption. 

Either tweet in your picture to myself or @Fibro_girl, Using the Hashtag #MyFavouriteThing2012 or e-mail me at Fibrography@yahoo.co.uk

Please use Jpeg format for your images. Thanks

Questions or comments - please add below:

Blood Tests, Receptionists and Patience (Patients)

I had the following tests last week:

 

BP (bone profile)   ESR    FBC (full blood count)   FGL (fasting Glucose)      

FLP (fasting lipids)     GGT (GammaGT /MCHfT)     LCRP (C-reactive protein) 

LF (Liver Profile)    LTF (Thyroid function/ MCHfT)     PR (proteins TP/Alb)    

UA (Urate/ uric acid)        UE (renal profile / U&E/creat)

 

I went in to ask doc for liver function and thyroid tests… said jokingly, might as well do everything while im there… think she took me TOO seriously !!

 

TODAY I had a letter telling me the GP wants the LCRP (C-reactive protein) repeating...

 

 The following information was taken from http://arthritis.about.com/cs/diagnostic/a/crp.htm

What Is CRP?
 
It is not a new test, but it is a test in the news. CRP, also known as C-Reactive Protein, is a test which measures the concentration in blood serum of a special type of protein produced in the liver that is present during episodes of acute inflammation or infection. In the body, CRP plays the important role of interacting with the complement system, an immunologic defense mechanism.
As a blood test, CRP is not specific. A high result serves as a general indication of acute inflammation. In cases of inflammatory rheumatic diseases, such as rheumatoid arthritis and lupus, doctors can utilize the CRP test to assess the effectiveness of a specific arthritis treatment and monitor periods of disease flareup. It's value is as a general indicator, not specific.
It must be noted that even in known cases of inflammatory disease, such as rheumatoid arthritis and lupus, a low CRP level is possible, and is not indicative of no inflammation.
Normally there is no CRP in blood serum. From Lab Tests Online, "a high or increasing amount of CRP in your blood suggests that you have an acute infection or inflammation. Although a result above 1 mg/dL is usually considered high for CRP, most infections and inflammations result in CRP levels above 10 mg/dL".
A positive CRP may be an indicator of several conditions, including:

• rheumatoid arthritis
• rheumatic fever
• cancer
• tuberculosis
• pneumonia
• heart attack
• lupus

A positive CRP also can be detected during the last half of pregnancy or with the use of oral contraception.

Sedimentation Rate

Another blood test often ordered in conjunction with CRP is known as ESR (erythrocyte sedimentation rate or sedrate). Both CRP and ESR give similar information about non-specific inflammation. CRP appears and disappears more quickly than changes in ESR. Therefore, your CRP level may drop to normal following successful treatment, whereas ESR may remain elevated for a longer period.

So either I have yet another illness (possibly arthritis, as I have already been told I have arthritic changes in my feet) to add to the list or its just inflammation from a virus.  Considering I do seem to have issues with my sinuses at the moment and a constant headache, I'm hoping that's all it will be.  I don't actually know what the results of the 1st test were, the letter didn't tell me, all it said was that it has to be repeated in 2 weeks.  *sighs*


So, I ring the docs.... and my Blood Pressure goes through the roof.


Who the hell do the receptionists think they are?


Our practice sister tells me to ALWAYS ask for her to have my bloods taken and to ALWAYS ask for a double appointment.  The reason being, I am a bugger to get blood from, am prone to panic attacks and blown veins, so knowing she can get blood from me fairly easily makes me more relaxed than if I had to go t the phlebotomist, whom I've never met (cos they keep changing) and have no experience of whether she is going to be understanding with me.   I have had many experiences with phlebotomists who think they know better than their patients when told such things as.. "You wont get blood from my arm, please use butterfly needle in back of hand"  or  "If you insist on stabbing me randomly in my arm I will have a major panic attack and probably pass out on you"...

The receptionist tries to refuse the appointment on the grounds they are not allowed to book blood tests with the sister.  
So I say, "Well she drew the bloods last week, and its under her instruction that I am asking for an appointment with her".  
So she relents and books it, then I say, "is that a double slot?"  
"No" comes the reply, "A blood test is a 5 min appointment, so by seeing Sister you are getting double time anyway as her appointments are 10 mins"....  
I bite my tongue, take a deep breath and explain AGAIN, that I am a tricky patient to take blood from and at the instruction of Sister herself I am supposed to get a double appointment... but NO, lil miss Hitler re-incarnated refuses to budge any further and says all she can offer me is the usual 10 mins slot.

I thank her through gritted teeth and end the call then rant for 5 mins at my poor OH before ranting here dear friends....

xxx

 

Further Contact RE: Liddle Complaint

Having written** to the PCC again expressing my concern for the lack of representation for the Fibromyalgia community I have now received this response:

Thank you for writing to us.  I am pleased to confirm that UK Fibromyalgia have contacted us; they will be acting as the co-lead complainant with the ME Association.

 

Do not hesitate to get in touch if you have any further questions or concerns.

 

With best wishes,

** MY letter:

Thank you for you response.  I am, however concerned that you have not mentioned anything about Fibromyalgia.  The article also mentioned this illness in the same context as ME, and I detailed it in my complaint.

Might I suggest also contacting some organisations and associations who could represent the hundreds of thousands of Fibromyalgia sufferers as well.

Thank you.

http://www.ukfibromyalgia.com/

http://www.fmauk.org/

Original Post:
Press Complaints Commission Part 1

Terrified but Determined

February 2012 seems to be the month of new beginnings for me.  New challenges, new friends and BIG LEAPS forward.  (& this new blog)
If you follow me on Twitter you will know I am a bit of a hermit during the week, I dont leave the house alone, and am scared of my shadow some days.

I was recently invited to meet with some fellow #Spoonies, and felt totally overwhelmed at the prospect of meeting several new people all in one go.  So it was decided I would, when ready, meet with 1 of them to see how I got on.
I was still totally terrified at the thought of doing this and have been putting it off.
Well, today, I had 2 little nudges... (I am a bit  "woo-woo"* - I am into crystals, Reiki & spirit guides) and after reading today's Goddess and receiving a reading which brought forth a 2nd one, it seems now is the time to take some steps.

Suggestions were that I should ease away from my isolation via my creativity and try to arrange a lunch or girly time.  So that's what I'm going to do.

If that isn't enough, I have also taken up an offer from a new friend (in the same goddess group) to receive some business advice.  I have been considering trying to be self employed, based around my photography / digital art for a few months now (what with the welfare reform bill, and my sheer desperation to be creative again) and day by day little pieces are slotting into place. 

For anyone genuinely interested in Spiritual (not religious) guidance, Please consider giving Amy Palko a follow:

http://www.facebook.com/amypalko

https://twitter.com/#!/amypalko

*"woo-woo"  To quote Amy and one of her wonderful blog posts:  http://www.amypalko.com/2011/11/woo-woo-closet/

The Daily Fail Strikes Again

Daily Mail (Daily Fail) Quotes

"Mr O’Shea claims the maximum disability living allowance, which is meant for people who have severe difficulty moving. But that doesn’t seem to have stopped him getting out and about.

In the past few years, the couple have taken holidays in Alaska, Canada and Australia."

AND ???  Whilst I don't exactly agree with Mr O'Shea continuing to claim benefit after winning so much money, (after all, he could afford so much better than a mobility car with just the interest alone on that sort of winning) it doesn't friggin mean that his disability should stop him going on fucking holiday !!!

"Now it is claimed — in The Guardian, naturally — that ‘two-thirds’ of disabled people have been subjected to abuse and threats of violence because of the Government’s plans.

Do you believe that? No, me neither."

"The mental health charity, Mencap, even squealed hilariously that moves to rein in the welfare budget ‘could lead to an increase in resentment against disabled people and even an increase in hate crimes’.

Oh, for heaven’s sake.

The purpose of the welfare reforms is to make sure that no one is better off living on benefits than they would be working and that incapacity and disability allowances are paid only to those genuinely unfit for work."

YES it it is supposed to be a system to support the genuinely sick and in need... NO it isnt working...NO the planned changes wont work... AND NO we are NOT better off on benefits BUT we have no fucking choice.  Our bodies are too sick to allow us to work... there are limited jobs available, (despite what Maria Miller would have us believe) and no bloody employer in their right mind is going to hire ME!

I cant guarantee when I can work, hell I cant even guarantee being able to get out of bed never mind dressed and leave the house.  I don remember anything that's said to me, I cry most days, I'm doped on pain meds, I have pain 24/7, I drop things, I have no strength oh yes and I don't leave the house alone - so are they going to employ my retired arthritic mother to come to work with me ?

NO  I didnt think so !!

As for not believing about the abuse the disabled are getting, I dare you to walk in  our shoes for a week! The stares, the looks of disbelief, judgement, tuts and laughter along with the jeering, cruel words and challenges when using my Blue Badge or a disabled toilet.  (Yes Ive experienced all of the aforementioned in recent months)

Feel the urge to read the full Daily Fail article click here:  http://www.dailymail.co.uk/debate/article-2097403/Rollover-time-benefit-lottery.html#ixzz1leNB0T4u

TWITTER BUDDY SCHEME

POSTED ON BEHALF OF SOPHIE (Founder - @oxymoronic82)

 

What is the Twitter Buddy Scheme?

@Become_a_Buddy #TwitterBuddyScheme
Twitter is already a fantastic outlet for meeting like-minded people and sharing your thoughts and feelings. People already have a great rapport with many of their followers and many have already sparked up friendships. So what makes the Twitter Buddy Scheme different? Well, I’ve noticed that a lot of people feel very lonely a lot of the time. A phrase exists along the lines of “You feel loneliest when standing amongst a crowd of people”, and it would seem that Twitter has this effect on lots of you.
The Twitter Buddy Scheme hopes to encourage people to reach out to one or two of their followers, (probably someone they already have a good connection with), and to become a familiar, caring figure in that person’s life. It is hoped that your Buddy will be your first port of call when you need some support and that they will hopefully become someone you learn to rely on and can become completely open with in time. It should mean that you can have that one person that will genuinely be there for you. It is hoped that each pair of Buddies will provide a secure environment for each other where there will be no taboo subjects, no judgement, no rejection; just pure, honest friendship.
It can be a daunting prospect for many people to be completely open and honest with another person, but the idea is that you build up a connection over time and the level of openess can be at a level suited to each pair - for some this may simply be checking in every now & again so that you know you’re not alone; and for others it may be daily contact or could even lead to a life-long friendship.
Whether you chat openly via tweets or privately via Direct Message (DM) is up to each pair of Buddies, but please ensure that you chat via DM only when sharing personal details or any information that you wish to be kept private. Over time, people may want to swap to email, Skype or even phone calls. This is fine, but again, please be careful and responsible when swapping contact details. TRUST IS KEY.

FREQUENTLY ASKED QUESTIONS

What if I really need some support but my Buddy is unavailable? It is not expected for Buddies to be online 24/7, but more to be a constant, reliable source of friendship and support. So even if you don’t get a reply until 12hrs later because of work, time zone differences, or sleeping, you will always get a reply eventually and you can be reassured that it is because that person WANTS to reply and genuinely cares about you, rather than someone feeling it is their duty to do so.

I want to be a Buddy, but I am not online very often, is this okay? You can still be a Buddy if you’re not online much, as any amount of support you can provide will be invaluable to the person receiving it, but each Buddy needs to make their availability and expectations clear from the start. If Buddies feel pressured to be online more than they usually are that will leave both parties feeling inadequate and disappointed, as will making your Buddy feel bad for not responding immediately.

Can I have more than one Buddy? It is fine to have more than one Buddy, and in fact in some cases this would be encouraged in order to provide potential around-the-clock care, but please make sure you don’t have more Buddies than you can cope with - you want to be able to give your Buddy your full time and attention when needed.

How do I get paired with my Buddy? There are two easy ways to get paired with a Buddy. Firstly, you can approach your followers and offer your Buddying services to them - this is particularly good if you have certain people in mind that you would like to be a Buddy for. Secondly, you can tweet under the hashtag #TwitterBuddyScheme stating your willingness to be a Buddy.

TWITTER BUDDY SCHEME TEMPLATES
Invitation for Requests - I am happy to be a Buddy #TwitterBuddyScheme
General Request - I would like for someone to be my Buddy #TwitterBuddyScheme
Direct Request - I am very interested in being your Buddy. It is perfectly ok for you to decline this request
Declining Requests - Unfortunately I have already reached my Buddy limit and therefore I have to decline your request

PLEASE REMEMBER that this is not an official service, nor are Buddies trained. This is simply a way of connecting people at a more personal level so that everybody has the chance to feel worthwhile and cared about because EVERYBODY deserves that.

Sophie, Founder - @oxymoronic82

Press Complaints Commission

Today I received this response from the PCC regarding the offensive article in the sun:

Thank you for writing to the Press Complaints Commission about an article in The Sun by Rod Liddle headlined “’Pretend disabled’ really ARE sick”. We have received over 100 complaints about this coverage, mainly framed under Clause 1 (Accuracy) and Clause 12 (Discrimination) of the Editors’ Code of Practice.
In the circumstances, we have contacted the M E Association, who have confirmed that they expect to make a formal complaint to the PCC about this matter. We believe that the M E Association will be able to represent the concerns made by complainants as a whole, and in line with our standard procedure, we intend to investigate the matter using the M E Association as lead complainant.

We will seek to inform you of the outcome of our investigation in due course. In the meantime, please find attached for your information a copy of The Sun’s letters page of 1 February, which included several letters on this issue, including one from Dr Charles Shepherd of the M E Association.

A copy of the Code of Practice can be accessed using this web link: http://www.pcc.org.uk/cop/practice.html .

Further information about the complaints process can be accessed using this web link: http://www.pcc.org.uk/complaints/process.html.

Information about our service commitments to complainants can be accessed using this web link: http://www.pcc.org.uk/complaint/charter.html.

Further information about the PCC can be found on our website http://www.pcc.org.uk .

Yours sincerely


xxxxx xxx
Complaints Coordinator

Now I FULLY accept that its a good idea to liaise with the ME association, but what about the Fibromyalgia associations ? Liddle mentioned both in his article and I referred to both in my complaint. Anyone else get this response to their complaint ?

Introduction

I have FMS and CFS. I am trying to raise awareness of these and other similar debilitating illnesses.
I was always a sensitive child...both to pain, sound and light. Looking back to times I can recall in my childhood, I remember being told I was a wuss, and "that couldnt possibly have hurt you, grow up".
I guess for a while I developed an inner and outer strength and I remember working in a bar at 20/21 yrs old, and being able to move beer barrels around in the cellar. Just after this however, was when I 1st experienced a 'bad back', and maybe this is where it all started/flared up from.
I was 34 before I finally got a diagnosis of FMS/CFS, after suffering for more than 10 years with increasing pains, reduced mobility, anxiety, depression and weakness.
I have my good days, but they are rare - I have my 'general days' and I have my bad days. General days are painful, stressful and tiring....bad days are the ones when I cant get dressed or even lift my cup without feeling acute pain in my hand and elbow, and almost dropping it.
My one wish - no, I don't wish for a miracle cure. Why you might ask ? Well, because what I wish for IS possible...if only the medical profession would take the time to learn.
My wish is for our GP's to understand what it means to have FMS/CFS/ME. Not Just our GP's, but those whom we may have to see from time to time for those benefit assessments etc. I know GPs get frustrated because they cant cure us, just as we get frustrated with them. They took an oath to heal people, and they can't heal us. In fact, sometimes they cannot even ease our pain. If only more GP's and other medical staff would take a little time to listen to us, to try to see through our eyes. DONT palm us off with meds that you gave the last 100 patients you saw...IM NOT the same as them. my symptoms may be similar, but that doesn't mean my body is going to react the same way to those meds. Consider the possibility that alternative remedies DO work....and dont dismiss our suggestions as whacky, unfounded or TOO EXPENSIVE !!!
Remember - They may not be able to see our pain, but YOU can feel it...and they can't prove it isnt there !!! YOU are human...YOU have rights...YOU have the right to be heard - TALK - SHOUT - DONT STAY QUIET - LETS MAKE THEM HEAR US !!