Tag Archives: myositis


Myositis Poem

myositis poem

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Posted by on September 22, 2013 in myositis


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Invitation to submit information for posting or become an author on this blog


To post on this blog or become an author 


I   would like to invite anyone who has a story relating to myositis or disability to submit their their story or post for publication on this site or if you would like to contribute regularly I will “appoint” you as author and you will be able to post at your leisure.


Patients, Carers and Family that have been affected by this horrible disease.

Please feel free to submit articles for publication or become a regular contributor to this interactive site.

Let me know in the comments section below or email me


Posted by on September 20, 2013 in Disability, IBM


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Posting for Myositis Awareness Day

A vivid description of a day with Myositis

Posting for Myositis Awareness Day

So, what to wear today? Cant manage zips or buttons so were looking at elasticated waistbands – not too elasticated or weak hands cant pull them over fat hips. Difficult to avoid looking like my Aunt Ethel, but Pineapple make lovely dance trousers that dont look too bad and go on easily so thats what I live in. Leggings are an option if Im feeling particularly adventurous, but jogging bottoms make me look even more like Waynetta Slob than usual. Its too much effort to raise arms above shoulder level so t shirts, jumpers etc have to be big and baggy or at least have lots of stretch. Shoes can only be flat but not too flat no laces or buckles, and very light weight or they feel like lead weights on my feet. Coats, on rare going-out days, are definitely a 2-man job. Anyway, after a lot of puffing and a few bad words Im dressed and ready for a nap. Even the simplest tasks are completely exhausting and once youve used up your energy for the day you dont get any more. You have to weigh up everything you need to do in the day and ration your activity so that you dont burn out – do a bit, have a rest, do a bit more. Nothing can be done on the spur of the moment – its a bit like stretching your bank balance to the end of the month, only youre stretching your energy until the next sleep. And every day is the same. We dont get days off from this disease. I wish we did.

via Facebook.

via Facebook.

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Posted by on September 19, 2013 in Disability, health, IBM, Reblog


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Arm sling eating device



User Illustration.jpgassisted eating device

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Posted by on July 13, 2013 in Disability, IBM


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Dressing stick

dressing stick


Wonderfully useful device for pushing pulling and lifting

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Posted by on June 27, 2013 in Uncategorized


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Special eating utensils for disabled


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Posted by on June 19, 2013 in Disability, IBM


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The Statin Damage Gene


dr_duane_graveline_m.d._134By Duane Graveline, MD, MPH

With the advent of increasingly sophisticated and available genetic screening, much has been learned in these past few years directly bearing on statin toxicity. It appears that some of us are born with various genetic combinations that greatly increase our sensitivity to statin drugs. The question now is just how great this genetic factor is. A massive study out of Finland comparing Finns with the rest of the world has provided insight, chilling in its implications.

This all has to do with a genetic combination known to geneticists as the SLCO1B1 polymorphism, specifically the variant c.521CC genotype (affectionately known as “SNIPS” to workers in the field – special genetic combinations having very special effects.

This particular variant form has some rather remarkable effects on the pharmacokinetics of different statins. Its greatest effect was on the plasma concentrations of simvastatin (Zocor). It also had increased the plasma concentrations of Atorvastatin (Lipitor), Pravastatin (Pravachol) and Rosuvastatin (Crestor).

The Statin Damage Gene.

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Posted by on June 18, 2013 in Disability, IBM


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My ramblings of a mad world we live in. And some other helpfull topics will be added from time to time.

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Myositis is a neuro muscular disorder

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You - philosophical, thoughtful, witty. Me - still thinks fart jokes are funny. We should DEFINITELY get together!


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