About Me

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I have Fibromyalgia, OA and Depression. I am trying to raise awareness of these and other similar debilitating illnesses. 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 !! All the content featured on this site belongs to me and permission for use of any of my photos, images, names or blogposts is required.

Wednesday, 29 February 2012

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:

Tuesday, 21 February 2012

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:
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

 

Friday, 10 February 2012

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