Procrastination

I don't know what to say today. I need to say it. This may be long, it may be short, it may be more scattered than any post i've written ... it may be more coherant than anything written. I need to get it out.

My heart is broken, shattered and torn. A friend, who I loved more than I realized ... passed away yesterday. She was a beautiful, tiny red headed woman. Strong, and quietly fierce. If you didn't know, you'd never know she was suffering ...daily. She humbly wrote it off.

She was married, with 2 sons, both in the same grades as my sons. We started to the same church at about the same time. Our youngest sons were in kindergarten. Tiny little things ... still waddling when they walked. The way kids who are not still toddlers but not quite yet 'children' do.

A few years later, our boys would go to church camp for the first time together ...and our older boys grew up together in children's church ..and graduated together into youth group .. and now, they've both graduated from high school. Her son has gone into the miliatary, and mine to college. Both fine young men.

Our husbands have both gone through some remarkable changes over the years, scarcely the men that they were when they first shook hands. Her husband, probably doesn't know that he's partly responsible for my husband's return to church life after a 15 year absence. His graceful, loving, and caring acceptance of who Don was, where he was ..without an expectations of anything OF him ... helped Don to see church as a place that he could go and be a part of again. This, ultimately led to the healing of our marriage. Her husband has no idea of the role he played in that.

Over the years, we were in a small group together, her husband and i spent 7 years in the worship team together (me 8 years, him 7 of those 8). We both served as adult volunteers in the youth group ... and they hosted many many parties for the youth group!

Many times, she would be in the hospital, I'd go to see her ... or me, and they'd either call or come to see me. Between the 2 of us, we kept our pastor hopping, that's for sure!

But like Don, we knew, that what she had, could take her life ... we knew that her father had died young ... and she might not make it. That gave her husband and I a special bond.

Her husband, like me, is a poet. Another thing we bonded on. Her husband and I got published together, the same week in a local publications with our poetry. It was so fun for the 4 of us to read that together at a church Thanksgiving Dinner.

With each surgery, we knew that it was a risk, and we held our breath and prayed. The silent panic we kept down with prayer and supplications ... not this time God! PLEASE NOT THIS TIME!

The same prayer i pray every time my husband gets sick.

Last year, when Don was sick, they weren't around and i never thought to tell them. So when they started to come back to church and found him using a walker with oxygen, they were a just a bit alarmed. It was hard to explain to these people who cared so much for us, what had happened and we hadn't let them know.

While we'd been building our house, she'd been in the hospital in Dallas for most of that time ..she didn't get to see it. I kept meaning to invite her over ...

but something about her was special .. . ..
I didn't want her to just SEE the house, I wanted her to see the completed house ... with all the paintings and decorations that everyone had given us, up on the walls ...and you see ... almost 2 years later, I still have white, blank walls.

Not a nail has been put in the wall. I've had my reasons. Health, Don's situation, need help ... this or that ... but I've put off inviting my friend over till it was 'done' then I'd have them over for dinner.

But yesterday, she passed away. Without ever seeing my house. She'd have rather seen it with the blank walls ...she even told me so once. She told me she couldn't wait to see it and I told her 'let me get the paintings hung, let me get it perfect'.

I knew she didn't care, but I wanted it perfect for her.

If only I'd not procrastinated ...

she's gone and the white walls are still here.

Got this great Meme from Ramona. I normally moan when I see meme's come down the pike and and am greatly relieved if my name is not named. (I only get about half the meme's done that I am named at! oops Ms. Moof usually gets her meme's done even though she moans as well) While Dr. Bates didn't tag anyone, I found this one so facinating, I just did it myself, I too, will not be tagging anyone but challenge you to do it as well!

The Big Read is an initiative of the National Endowment for the Arts designed to restore reading to the center of American culture. The NEA presents The Big Read in partnership with the Institute of Museum and Library Services and in cooperation with Arts Midwest.

Still it is interesting to read the "meme list" and see which ones you have read. So here it is:

“The Big Read reckons that the average adult has only read 6 of the top 100 books they’ve printed.”

1) Bold: I have read.
2)italics: Books I love.


3) Reprint this list in your own blog so we can try and track down these people who’ve read 6 and force books upon them ;-)


1. Pride and Prejudice - Jane Austen (oddly enough ...checked this out from the library YESTERDAY!!)

2. The Lord of the Rings - JRR Tolkien

3. Jane Eyre - Charlotte Bronte

4. The Harry Potter Series - JK Rowling

5. To Kill a Mockingbird - Harper Lee

6. The Bible

7 . Wuthering Heights - Emily Bronte

8. Nineteen Eighty Four - George Orwell

9. His Dark Materials – Phillip Pullman

10. Great Expectations – Charles Dickens

11. Little Women - Louisa M Alcott

12. Tess of the D’Urbervilles - Thomas Hardy

13. Catch 22 - Joseph Heller

14 . The Complete works of Shakespeare (Have read many ...but certainly not all)

15. Rebecca - Daphne Du Maurier

16. The Hobbit --J.R.R. Tolkien

17. Birdsong – Sebastian Faulks

18. Catcher in the Rye - JD Salinger

19. The Time Traveler's Wife

20. Middlemarch - George Eliot

21. Gone With The Wind - Margaret Mitchell

22. The Great Gatsby - F Scott Fitzgerald ick ..ugh ..ack!!!

23. Bleak House - Charles Dickens

24. War and Peace - Leo Tolstoy

25. The Hitch Hiker’s Guide to the Galaxy - Douglas Adams (some day, I keep telling myself ...some day ... )

26. Brideshead Revisited – Evelyn Waugh

27. Crime and Punishment - Fyodor Dostoyevsky

28. Grapes of Wrath - John Steinbeck (high school assignment ..barely remember it ..never saw the movie)

29. Alice in Wonderland - Lewis Carroll


30 . The Wind in the Willows - Kenneth Grahame

31. Anna Karenina - Leo Tolstoy

32. David Copperfield – Charles Dickens

33. Chronicles of Narnia - CS Lewis (um, this is 7 books and I've read them each about 20 times, I used to read them once a year)

34 . Emma - Jane Austen

35. Persuasion - Jane Austen

36. The Lion, The Witch and The Wardrobe - CS Lewis (mmm if I've read the chronicals of narnia, by default, I've read this one)

37. The Kite Runner - Khaled Hosseini

38. Captain Corelli’s Mandolin - Louis De Bernieres

39. Memoirs of a Geisha - Arthur Golden

40. Winnie the Pooh - AA Milne

41. Animal Farm - George Orwell

42. The Da Vinci Code - Dan Brown

43. One Hundred Years of Solitude - Gabriel Garcia Marquez

44. A Prayer for Owen Meaney - John Irving

45. The Woman in White - Wilkie Collins

46. Anne of Green Gables - LM Montgomery

47. Far From The Madding Crowd - Thomas Hardy

48. The Handmaid’s Tale - Margaret Atwood

49. Lord of the Flies – William Golding

50. Atonement - Ian McEwan

51. Life of Pi - Yann Martel

52. Dune- Frank Herbert

53. Cold Comfort Farm - Stella Gibbons

54. Sense and Sensibility - Jane Austen (also checked this out yesterday from the library!!)

55. A Suitable Boy - Vikram Seth

56. The Shadow of the Wind - Carlos Ruiz Zafon

57. A Tale Of Two Cities - Charles Dickens

59. The Curious Incident of the Dog in the Night-time - Mark Haddon

60. Love In The Time Of Cholera - Gabriel Garcia Marquez

61. Of Mice and Men - John Steinbeck

62. Lolita - Vladimir Nabokov

63. The Secret History - Donna Tartt

64. The Lovely Bones - Alice Sebold

65. Count of Monte Cristo - Alexandre Dumas (I can remember having this, and sitting with it open ..but I honestly can't remember if I read it or not!!)

66. On The Road - Jack Kerouac

67. Jude the Obscure - Thomas Hardy

68. Bridget Jones’s Diary - Helen Fielding

69. Midnight’s Children - Salman Rushdie

70. Moby Dick – Herman Melville ( I bartered my way out of reading this in high school ...sue me)

71. Oliver Twist - Charles Dickens

72. Dracula - Bram Stoker

73. The Secret Garden - Frances Hodgson Burnett

74. Notes From A Small Island - Bill Bryson

75. Ulysses - James Joyce

76. The Bell Jar - Sylvia Plath

77. Swallows and Amazons

78. Germinal - Emile Zola

79. Vanity Fair - William Makepeace Thackeray

80. Possession - AS Byatt

81. A Christmas Carol - Charles Dickens (better read than ANY movie production of it!!)

82 Cloud Atlas - David Mitchell

83. The Color Purple - Alice Walker

84. The Remains of the Day - Kazuo Ishiguro

85. Madame Bovary - Gustave Flaubert

86. A Fine Balance - Rohinton Mistry

87. Charlotte’s Web - EB White

88. The Five People You Meet In Heaven – Mitch Albom (another one I keep saying I'm going to)

89. Adventures of Sherlock Holmes - Sir Arthur Conan Doyle

90. The Faraway Tree Collection – Enid Blyton

91. Heart of Darkness - Joseph Conrad

92. The Little Prince – Antoine de St. Exupery

93. The Wasp Factory – Iain Banks

94. Watership Down - Richard Adams

95. A Confederacy of Dunces – John Kennedy Toole

96. A Town like Alice- Nevil Shute

97. The Three Musketeers - Alexandre Dumas

98. Hamlet- William Shakespeare

99. Charlie and the Chocolate Factory - Roald Dahl

100. Les Miserables – Victor Hugo


I would also recommend Little Men. Anyone who loved Little Women, should read Little Men.
This list reminds me of all the must reads on my list ... and just as I'm getting to bury myself in school work o.O
Anything by CS Lewis,
Randy Alcorn is my second favorite Christian author, but he's been inspired by CS Lewis

Oh ..and then there is always ... Friday Fellowship by Peggikaye Eagler *GRIN*

The Monkey chases the weasel

I would have said here we go round the mulberry bush ...but I think I've titled a post that before ... so I did the next best thing.

So ... insurance merry go rounds. UGH.

They've decided that Cellcept is only good for transplant patients.

Um ...ok.
EReruh um uh ... except that

Cellcept is used in
Lupus
Rheumatoid Arthritis
Chrohns Disease
Myasthenia Gravis

and a few other autoimmune diseases.

It is used ... because it is .. SIGNIFICANTLY SAFER ... and SIGNFICANTLY more effective at working on autoimmune diseases ...without causing QUITE the immunosuppression of Imuran (therefore causing less risk of infection).

Don't get me wrong ... Cellcept *IS* an immunosuppression ... it *does* come with the risk of infections ... it does come with the suppressed immune system so the body is at risk of developing certain cancers (cancer is an cell that mutates when the bodies immune system doesn't properly fight it).
However, because of the chemical make up of Cellcept ... it doesn't do it in the same way as Imuran and has proven to be safer and do the same job ...

While the risks are the same, they are LESS risky.

So ...less risky and more effective .... who wouldn't use that drug?

Insurance companies.

Immunosuppression therapies have been used for 25 or more years in treatment for Myasthenia Gravis. I know this ...because I've been on it for 16 years ... and I had a friend who'd been on it for well over 15 years at the time that I was diagnosed. I *think* she had said 20, but since she's passed away (Actually from complications from Imuran) I can't ask her if it was 15 or 20, so we'll say 15.

While I was on Imuran ...
I wore leg braces because my foot drop was so bad. I could not walk up a flight of stairs ... I often needed help dressing and choking was a normal every day occurance. I LOOKED .. like a Myasthenic on a daily basis not just when I over did it.

My insurance has decided that the reasearch doesn't prove that Cellcept is effective enough for autoimmunity ... and therefore is only to be used in transplants (even worse, Kidney transplants only)

I am now going back onto Imuran. I knew it was coming, been fighting with insurance for months and I knew I was loosing, but I've lost ... and today, i was handed the script for Imuran. I feel like I'm taking 10 steps back ... just when I'm headed back to school and will need every single ounce of strength and energy I can muster.

My prayer is that Cellcept will have brought enough HEALING to the muscles and immune system that the Imuran will allow me to maintain status quo ... maybe that with the prednisone and plaquenil that I take for the lupus ... it will be more effective this time?

Why do insurance companies think it's ok to use a far more risky, less effective medication, that has been proven in a patient to BE less effective ... on the simple fact that they are simply saying 'nope, we only use it for kidney transplants'
When immunosuppression has been standard of care for a diseases for a quarter of a century?

How can they mess with my life like that? The idea of paying for it myself would be nice ... if the cost of a monthly supply was not literally more than my monthly income. A friend who has had a kidney transplant his insurance copay ... is $250 (they pay 20% of their drug, you do the math) (although My insurance was getting it for $2100 so they may be getting ripped off)

The reality is .. it that's what it comes down to ... Imuran is about $250 and Cellcept is $2000

the fact that it's not as safe of a drug has nothing to do with it ... does it.