Monday

Feeling physically strange

Sometimes I feel like a fish out of water: I have a body but it is not working right. Actually being in water is about the only place I do feel like all my muscles relax - especially if it is warm water. Then I feel so good I have to remind myself not to overdo it as I start jumping around and exercising and swimming and the next day my muscles are too fatigued. Soon I will start hydrotherapy exercises at the hospital pool. I am looking forward to that.

Tuesday

Visiting the Specialist

Yesterday I had a cognitive test, Spirometry (meaning the measuring of breath - the most common of the Pulmonary Function Tests, measuring lung function) and a visit with the physiotherapist. I was expecting a quick check up at the clinic, as usual, so was quite impressed. I did not get the results of my 2 tests but I suppose I get them in November on my next appointment.
NOTES TO SELF:
1. I always forget to take a list of tablets and feel like a numbskull when they ask is that 50 mg or 100mg etc. Write out a list and keep in handbag.
2. Never go anywhere without a bottle of water and a snack such as a piece of fruit.

Saturday

Myositis Awareness Day is September 21st

Myositis Awareness Day is this month.
The aim is to educate the public and healthcare community about myositis.

USA: The Myositis Association and its members worked to have the U.S. House of Representatives designate September 21st as National Myositis Awareness Day. This day has been recognized through a Congressional resolution to bring awareness and national attention to this disease.

"Myositis is thought to be an autoimmune disease and shares much in common with other autoimmune diseases like rheumatoid arthritis and lupus. Unlike these diseases, though, myositis is so rare that it often goes for weeks and months without a diagnosis, reducing the chances of a good outcome for new patients. There’s a form that has no known treatment, a form that affects children, a form that causes a painful rash and calcium deposits, and a form that’s accompanied by lung disease. What they have in common is a mysterious weakening of the muscles, appearing first as the inability to rise from a chair, hold your arms over your head, or get up from a fall.
Myositis patients rely on information provided by their specialists and The Myositis Association. The members of TMA plan events all over the country on September 21st to publicize this disease. We hope that increasing awareness will encourage early diagnosis, research and ultimately a cure." FROM TMA SAMPLE LETTER AVAILABLE for you to send to local elected officials.

AUSTRALIA: Myositis Awareness Day events information at The Myositis Association Australia Incorporated (Keep in Touch group)

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