Please check out the following blog........ It will break your heart.

http://www.canada.com/vancouversun/story.html?id=489a4ee0-057e-4303-b558-3edb18c95eba

IT IS WHAT IT IS

Life is what it is. Sometimes you can go to the left or to the right. I believe that it must be taken head on and we need to go straight ahead. Life may not necessary be the life I wanted. It is what has been intended for me. But whatever it is, my life has been predisposed. It is what it is.

My life is not what I had expected it to be at this age. I had never in my wildest expectations thought that I would be chronically ill at almost 52. Having a disease that there is no cure for and the treatment for is imaginative at its best. But I go on, or at least I try to go on. It is what it is.

Don't get me wrong, I still get depressed over this. But those spells are far and in between. They usually occur when I am in a particularly horrible Lupus flare. Otherwise I wrangle through my days. Taking solace that at this point what the universe has thrown at me is not yet life threatening. Painful yes. Brain draining, definitely. Confusing and disturbing, most assuredly. It is what it is.

Because I do live with this eventuality deep down in my psyche I am suspicious and at times I am waiting for the next shoe to drop. But it does not define me. It is what it is.

I maneuver through this life with a sense of tenacity. Recognizing my inability to veto any of this. It is what it is.

Overall, I am a exultant woman and attempt to navigate easily through my life. I may not always succeed, but I do try.

Therefore, even though my life is not what I had planned it to be .... I am accepting of what it is. Again.... It is what it is.

And, as a very dear friend once wrote..... I am not complaining ......... just making a statement of facts.

Every other aspect of my journey through this thing we call life is wonderful.

I was asked if I could check my own INR. There was a time when I did do just that. But with the new health insurance I have now, they do not pay for the supplies unless you have an artificial heart valvue. I have the machine but those supplies are very expensive. I used to check my own by doing a finger stick and then call in the numbers to the local anti coagulation clinic and they would go over my dosage and make any necessary adjustments. I wish I could do that again.

Good Evening Friends!

I have been fighting the battle of Low INR. For those of you who do not know that is the number explaining how thick or thin my blood is. Too low and my blood is thick. Too high and my blood is too thin. It's been low. I've had about two or three TIAs this week. Finally this morning I ended up calling my doctor who told me to get right over to the hospital and get evaluated. I did that. They did the usual stuff. Took blood. Gave me a head CAT Scan. And, adequately treated the horrific head pain that always accompanies these episodes. I was referred to a Neurologist. I haven't been to one since we moved down here. I will call tomorrow and make an appointment.

Otherwise.........

I am HAPPY HAPPY HAPPY! Life is good. Hubby and I celebrated our Silver (25th) anniversary on the 16th. We went out for lobster (a gift from my son). My daughter gave me a gift certificate and gave her Dad a brick of bullets. He is into guns and has a carry permit. Then they surprised us with a party. We were really surprised. We got back from dinner and walked in the house and heard 'SURPRISE'. My brother and sister in-law gave us the best gift. It was a light weight vacuum so I don't have to sweep. It picks everything up. I suggest you get one. Mom gave us a few beautiful gifts and cash. It was wonderful.

That is not all that is making me happy. I am just feeling very content with my life. And, this is a good thing.

Saturday, January 17, 2009

Meme
Snagged from JoAnne...

Saturday, January 17, 2009
Just boldface the items that you HAVE done, and leave the rest normal…

1. Started your own blog

2. Slept under the stars

3. Played in a band

4. Visited Hawaii

5. Watched a meteor shower

6. Given more than you can afford to charity

7. Been to Disneyland/world

8. Climbed a mountain.

9. Held a praying mantis

10. Sang a solo

11. Bungee jumped

12. Visited Paris

13. Watched a lightning storm at sea

14. Taught yourself an art from scratch

15. Adopted a child

16. Had food poisoning

17. Walked to the top of the Statue of Liberty

18. Grown your own vegetables

19. Seen the Mona Lisa in France

20. Slept on an overnight train

21. Had a pillow fight

22. Hitch hiked

23. Taken a sick day when you’re not ill

24. Built a snow fort

25. Held a lamb

26. Gone skinny dipping.

27. Run a Marathon

28. Ridden in a gondola in Venice

29. Seen a total eclipse

30. Watched a sunrise or sunset

31. Hit a home run

32. Been on a cruise

33 Seen Niagara Falls in person

34. Visited the birthplace of your ancestors

35. Seen an Amish community

36. Taught yourself a new language

37. Had enough money to be truly satisfied

38. Seen the Leaning Tower of Pisa in person

39. Gone rock climbing

40. Seen Michelangelo’s David

41. Sung karaoke

42. Seen Old Faithful geyser erupt

43. Bought a stranger a meal in a restaurant

44. Visited Africa

45. Walked on a beach by moonlight

46. Been transported in an ambulance

47. Had your portrait painted

48. Gone deep sea fishing

49. Seen the Sistine Chapel in person

50. Been to the top of the Eiffel Tower in Paris

51. Gone scuba diving or snorkeling

52. Kissed in the rain

53. Played in the mud

54. Gone to a drive-in theater

55. Been in a movie

56. Visited the Great Wall of China

57. Started a business

58. Taken a martial arts class

59. Visited Russia

60. Served at a soup kitchen

61. Sold Girl Scout Cookies

62. Gone whale watching

63. Gotten flowers for no reason

64. Donated blood, platelets, or plasma

65. Gone sky diving

66. Visited a Nazi Concentration Camp

67. Bounced a check

68. Flown in a helicopter

69. Saved a favorite childhood toy

70. Visited the Lincoln Memorial

71. Eaten Caviar

72. Pieced a quilt

73. Stood in Times Square

74. Toured the Everglades

75. Been fired from a job

76. Seen the Changing of the Guards in London

77. Broken a bone

78. Been on a speeding motorcycle

79. Seen the Grand Canyon in person

80. Published a book

81. Visited the Vatican

82. Bought a brand new car

83. Walked in Jerusalem

84. Had your picture in the newspaper

85. Read the entire Bible

86. Visited the White House

87. Killed and prepared an animal for eating

88. Had chickenpox

89. Saved someone’s life

90. Sat on a jury

91. Met someone famous

92. Joined a book club

93. Lost a loved one

94. Had a baby

95. Seen the Alamo in person

96. Swam in the Great Salt Lake

97. Been involved in a lawsuit

98. Owned a cell phone

99. Been stung by a bee

WE NEED TO FIND A CURE OR AT LEAST BETTER TREATMENT OPTIONS

Lupus has been kicking my butt this week I have been trying not to surrender but I find myself spending a lot of time in bed on the "Big Gun" meds. I had to put out the white flag.

This flare started a few days ago with chest pain which turned out to be costochondritis.

Basically Costochondritis is characterized by pain and tenderness in the upper chest. This pain may be sudden, sharp and fleeting or may be a dull ache that comes on slowly and lasts for hours or days. Certain activities, such as deep breathing or pressure to the affected area, worsen the pain. It may radiate widely or remain localized. It can mimic the symptoms of heart attack (myocardial infarction, MI) in many patients, who thus may get a work-up for MI.

Here some links describing it. Many of you with Lupus or other chronic pain conditions know all too well what this is like.

http://www.mayoclinic.com/health/costochondritis/DS00626

http://yourtotalhealth.ivillage.com/costochondritis.html

I ended up at the local ER. They did all the tests to rule out a heart attack. The EKG and heart enzymes were great. I was not having a heart attack. Deep down I knew that was the case. I followed my doctor's instructions and went to the ER because, he said, You ALWAYS have to have chest pain evaluated.

But, and please don't misunderstand because I DID NOT WANT IT TO BE MY HEART, once it was established that my heart was not the cause, the attention they gave me slowed down. I know what the treatment for costochondritis is. Just make the patient as comfortable as possible. Which includes strong pain meds and a bag of solumedrol. I got the pain meds but no solumedrol. I know that the solumedrol is the most important part of the treatment, especially when given via IV. This med (which is prednisione) almost immediately helps with the inflammation. After my first pain shot through the IV I waited, and waited for it to help. Nothing. It was demerol. I was a good girl and waited the appropriate amount of time before asking for something stronger. I was told that for a normal person the demerol should have brought my pain level down. Don't they know that a Lupus patient is not NORMAL? Finally I was given Dilaudid. Which did the trick for about an hour. If they would have listened to me and given me the prednisione the combo of the two would have helped me enormously. But what do I know I am not a Doctor God. I have only been through this for more times than I can count.

Without naming names, I have to tell you that the local hospital here in Easley is good. It's good when you have a sprained ankle, a broken something or even pneumonia. They know how to fix those things. Lupus is an unfix able condition. Especially, despite the sweating, I looked fine. I was actually told by the doctor that because I know I have Lupus that I should not have come to the ER. At this hospital they do not have the capabilities to run any of the antibody tests. They have to send the blood out. This hospital was the closest. The hospital in the "bigger city" is so much better and I should have taken the time to go there. It is a major hospital complex and they take these things a little more seriously. Next time I will know better.

As of now, the pain is pretty much all over. Especially my hips, neck, back and knees. My sleep is horrible. My body feels like a blob of jelly. The fatigue is paralyzing and my GI system is doing flip flops. I keep a bowl at my bedside because when the nausea set in, I have little time to make it to the bathroom. My head is foggy.

I am so thankful for my hubby and children they know what Lupus is all about and take very good care of me when I flare this long and hard. Mom has brought over some meals to help. I am so thankful for that. Most of my family calls to check up on me.

Here is another web site that I just love. It is written by a lovely woman named Christine who also suffers from Lupus. It is chock full of information. I have linked this site before, but here it is again. I suggest this be the first place one goes to learn as much as they can about Lupus.

http://butyoudon'tlooksick.com

On this website, she shares a story called The Spoon Theory. Here is a portion of what she writes....

The Spoon Theory
by Christine Miserandino

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

Here is the rest of the story....

http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

After you read this you will understand when I say that "I AM OUT OF SPOONS!"

I haven't had a flare of this magnitude in quite a while. I am still not feeling any better and suspect that this will last a while and just need to run it's course.

Tomorrow I have my two month check up with my rheumatologist. Maye he will prescribe a short course of prednisione. I have to tell him that taking the heavy duty narcotic meds are making me feel worse.

The good news this week is that I have finished all the testing on my kidneys. Still waiting for the results of the 24 hour urine catch, but I was told that my kidneys are fine. There are no words to explain how relieved I am at this moment. Kind of makes the flare a piece of cake knowing that Lupus has not gotten to my kidneys. Thank you Lord.

Just one final note........ Please continue to keep me in your prayers. Also, keep those who are researching and working on new treatments or dare I ask a cure in your prayers, as well.

Thank you.

Check this out.......

I am on the LFA's blog by Wick Davis. I am honored. Wick is such a great guy. And, I am so happy that other people can follow my journal especially the newly diagnosed. I was there once and if my writing and my experience dealing with the diagnosis can help one person I am happy.

Here is the link to Wick's journal on the LFA's web site:

http://lfa-inc.blogspot.com/

Thank you again Wick.

Have a great day, Bunches of hugs and love, LuAnne