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Even though most people who read this blog regularly know I have Primary Sjogren's, I thought I should take a minute to offer an article for those who want to learn more about it. If you are so moved, after reading it, check out the rest of the site.

About Sjögren's Syndrome

I have had Sjogren's since 1997. I experienced a sudden onset during a bout with anti-biotic resistant bronchitis. I was not diagnosed until 2003. I experience systemic symptoms, known as extra-glandular activity. My central nervous system, autonomic nervous system, entire digestive tract, skin, joints, eyes, mouth, hearing, brain and other areas are affected. The fatigue that accompanies it is quite profound, and the cognitive dysfunction is no picnic either. I am experiencing some relief thanks to immuno-suppressants, anti-inflammatories, and a medication that helps my body produce moisture, but not enough relief to lead a normal life.

 Found this funny when I was cleaning out my e-mail in-box. Apparently, Joan sent it to me a year ago.


Ocean View Restaurant

A group of 15-year-old girlfriends discussed where to meet for dinner. Finally, they agreed to meet at the Dairy Queen next to the Ocean View restaurant, because they had only $6.00 among them and Jimmy Johnson, the cute boy in Social Studies, lived on that street.

10 years later, the group of 25-year-old girlfriends discussed where to meet for dinner. Finally, they agreed to meet at the Ocean View restaurant, because the beer was cheap, the restaurant offered free snacks, the band was good, there was no cover and there were lots of cute guys.

10 years later, the group of 35-year-old girlfriends discussed where to meet for dinner. Finally, they agreed to meet at the Ocean View restaurant, because the cosmos were good, it was right near the gym and, if they went late enough, there wouldn't be too many whiny little kids.

10 years later, the group of 45-year-old girlfriends discussed where to meet for dinner. Finally, they agreed to meet at the Ocean View restaurant, because the martinis were big and the waiters had tight pants and nice buns.

10 years later, the group of 55-year-old girlfriends discussed where to meet for dinner. Finally, they agreed to meet at the Ocean View restaurant, because the prices were reasonable, the wine list was good, the restaurant had windows that opened (in case of hot flashes), and fish is good for cholesterol.

10 years later, the group of 65-year-old girlfriends discussed where to meet for dinner. Finally, they agreed to meet at the Ocean View restaurant, because the lighting was good and the restaurant had an early bird special.

10 years later, the group of 75-year-old girlfriends discussed where to meet for dinner. Finally, they agreed to meet at the Ocean View restaurant, because the food was not too spicy and the restaurant was handicapped-accessible.

10 years later, the group of 85-year-old girlfriends discussed where to meet for dinner. Finally, they agreed to meet at the Ocean View restaurant, because they had never been there before.

Toni Bernhard's latest article for Psychology Today. Thought it was interesting:

Who Didn’t Say That? Ten Surprising Misattributed Quotations

I suspect I may have been guilty of using some of these quotes myself. The stuff we pick up on the internet can be like that game someone whispers a sentence to the person sitting next to them, and then that person whispers it to someone else, and so on until the message changes to something that doesn't even resemble the original.

Came across this on one of those trusty fibromyalgia Facebook pages. Something to think about if you have liver problems caused by autoimmune disease or side effects of medication:

Why Turmeric May Be the Diseased Liver's Best Friend

I take a liver support supplement that contains turmeric along with milk thistle and several other ingredients. My liver enzymes as of last month (I had them tested again today but won't know the results until later in the week) were two-thirds lower than they had been the previous month. They are still elevated, but are much closer to healthy levels than they were.

Got this off of a fibromyalgia Facebook page. Seems pretty timely for those of us in most of the United States:

Managing Fibromyalgia in the Heat and Humidity

The past couple of summers in South Dakota have been miserable ones for me, and I seem to get more sensitive every year. When humidity above 50 percent combines with temperatures above 80 degrees, I develop headaches, weakness, drop dead fatigue, muscle twitching and spasms. I have been experimenting with changing my supplements around to see if I can reduce and/or eliminate some of these symptoms. I have started taking 1000mg of vitamin C with my breakfast Boost. I have added a half dose of my liquid B-complex multi-vitamin at that time. I am dividing the magnesium and taking it in three separate doses over the course of the day. It will take a few more weeks to know for sure if this will make a significant difference, but I do seem a bit less tired now during the first half of the day. 

Here's a recent Toni Bernhard article, culled from a fibromyalgia Facebook page. While it's definitely easier said than done, there is some good advice here:

Don’t Be Intimidated in the Doctor’s Office: Six Strategies

I was doing pretty well having confident interactions with medical professionals until I moved to South Dakota and encountered doctors who disregarded all the records I brought with me and decided that I didn't have the diseases I'd been diagnosed with. All it took was a single disastrous appointment to cause my long-term disability benefits to be terminated permanently. When doctors hold so much power over your quality of life and financial well-being, not being intimidated is a monumental but unfortunately necessary challenge.

The most recent edition of Entertainment Weekly featured lists of the 100 best movies, TV shows, music albums, and books. It inspired me to do my own variation. I started with their list, subtracted movies I hadn't seen or didn't feel were deserving, and added movies I thought they should have included. This is by no means a comprehensive list; if I put together all the movies I like, the total would easily be 1000. I am not completely satisfied with the rankings, but I've been rearranging them for several days, and I am simply just too indecisive, so I am going to leave it as it is right now. I did not include documentaries.

I plan to do lists for TV, music and books at a later date if/when I am up to it.

Here we go:

1. Citizen Kane

2. Casablanca

3. Rear Window

4. Gone With the Wind

5. The Lord of the Rings (entire trilogy)

6. 2001: A Space Odyssey

7. Seven Samurai

8. To Kill a Mockingbird

9. The Best Years of Our Lives

10. The Wizard of Oz

11. North By Northwest

12. Metropolis

13. Nosferatu

14. Modern Times

15. A Clockwork Orange

16. The Silence of the Lambs

17. Schindler's List

18. The Shining

19. M

20. Psycho

21. It's a Wonderful Life

22. All About Eve

23. City Lights

24. Intolerance

25. Annie Hall

26. Blue Velvet

27. Cinema Paradiso

28. Star Wars - Episode V: The Empire Strikes Back

29. Toy Story (entire trilogy)

30. Sunrise

31. Bambi

32. The Philadelphia Story

33. Vertigo

34. The Great Dictator

35. Star Wars: Episode IV - A New Hope

36. Brazil

37. The Adventures of Robin Hood

38. Lawrence of Arabia

39. Rashomon

40. The Gold Rush

41. Raiders of the Lost Ark

42. Adam's Rib

43. A Face in the Crowd

44. Network

45. The Seventh Seal

46. Titanic

47. American Graffiti

48. The Graduate

49. Blade Runner

50. The General

51. Safety Last!

52. Notorious

53. Olympia

54. Guess Who's Coming to Dinner

55. Brokeback Mountain

56. The Green Mile

57. Manhattan

58. The Third Man

59. My Man Godfrey

60. Do the Right Thing

61. The Pianist

62. The Elephant Man

63. Frankenstein

64. Night of the Living Dead

65. Sunset Boulevard

66. The Big Sleep

67. Ben-Hur (1959)

68. One Flew Over the Cuckoo's Nest

69. The Diving Bell and the Butterfly

70. Strangers on a Train

71. All About My Mother

72. The Rules of the Game

73. E.T. The Extra-Terrestrial

74. Bonnie and Clyde

75. Sweet Smell of Success

76. Terminator 2: Judgement Day

77. Taxi Driver

78. Rebel Without a Cause

79. It Happened One Night

80. Shadow of a Doubt

81. Saving Private Ryan

82. Forrest Gump

83. Yojimbo

84. Singin' in the Rain

85. Pulp Fiction

86.  Memento

87. Eternal Sunshine of the Spotless Mind

88. Spartacus

89. Bicycle Thieves

90. Rosemary's Baby

91. The Sound of Music

92. Midnight Cowboy

93. Dog Day Afternoon

94. King Kong (1933)

95. Rebecca

96. The Sixth Sense

97. Ran

98. The Princess Bride

99. Monty Python and the Holy Grail

100. Dr. Strangelove or: How I Learned to Stop Worrying and Love the Bomb

glitter-graphics.com

A Toni Bernhard article from a few weeks ago. Link courtesy of a fibromyalgia Facebook page:

In the Kingdom of the Sick: An Interview With Laurie Edwards

I find it heartening that people who are so very sick are willing to put so much of themselves into writing books to help others. I honestly don't know where they find the energy to do it, but I'm glad they are.

Apparently, this hoax is far more widespread than I imagined. Thanks to Jacy from the Facebook page "I'm not CRAZY....I have Fibromyalgia!" for alerting me to this:

Medical Alert Scam Continues to Proliferate

I think I may attempt to actually file a report even though I don't have much to go on except what was said on the phone and the bogus number they were supposed to be calling from. Maybe it will be enough after all. I hope someone is caught and prosecuted.

This is not one of those endlessly forwarded urban legends. This actually happened to me on Saturday. 

Apparently, someone has gotten my phone number from a list of Medicare recipients because I keep getting robo-calls directed at senior citizens. I am not a senior but am on Medicare due to disability.

On Saturday, I got a live call from a man who said he was with the company that does those "I've fallen and can't get up" ads. He said he was calling to arrange the installation of a medical alert system that was ordered. I told him that the number he had called does not accept solicitations and to remove it from his list. He insisted that someone had ordered a system, suggesting that perhaps someone in my household has suffered a fall recently. I insisted that no one in my household had ordered anything, but he would not stop his pitch. I refused to give him any identifying information, told him again to remove the number from his list, and then I hung up. I dialed *69 and wrote down the number that had just called me, and it was local. I then called that number but got a message saying it was no longer in service, meaning that it was spoofed. 

I worry that this is not an isolated incident; I'm sure they are calling other elderly and/or disabled people, and they have probably succeeded in ripping some of these people off. I probably don't have enough data to file an official complaint, but what I can do is warn everyone I know about these sorts of scams and ask that you spread the word. Do not EVER give out your address, insurance information, credit card information, Social Security number, etc. to a company or person you do not know. Better to be safe than sorry. I am on the "Do Not Call" registry, but it doesn't seem to be making any difference.