When I was a young girl I had this fantasy about what my life would be like when I was "OLD." Things never do turn out the way we fantasize they would.

A new page has been turned as far as my illnesses are concerned. I previously wrote about the seizures and that is still happening. Life is what it is. But I am not 100% positive that they are seizures. I believe that it's Lupus Celebritis rearing its ugly head in a huge way. I do not know how much longer I can write posts that would make much sense. I'm falling quite a bit and my eyesight is blurry most of the day. Hubby and the kids tell me I do things that are not normal. I cannot control this and when your brain is diseased there is no way to get a handle on it. I have a call into my doctor and am waiting anxiously for him to return it. So far he hasn't.

Please pray for me.

Again, I am going to quote my good friend, Lorettta........ I am not complaining........ just making a statement of facts. Thanks Loretta for that one.

On Thursday I will turn 52. For me this year it is nothing special except that I am still alive. And for that I am thankful.

Lupus has come back and reared it's ugly head once again. I am trying to deal with this the best way I know how to. Most of the time it works well. I manage to get through my day without much thought about what life has thrown my way. Lately I have been having a hard time with it. Things have been happening again. Flares have been coming more often and lasting a lot longer. The seizures have returned. That part is the hardest for me. Here in South Carolina (as I am sure it is in all the states) a person cannot operate a motor vehicle unless they have been seizure free for at least 6 months. Therefore I am confined to my home. My independence has been taken away from me. Where we live is very rural. There is no city transportation. Walking to shopping areas is unthinkable because they are so far away. I am left to depend upon others to drive me around. This makes me sad beyond sad. Not a day goes by that I do not end up crying. It has gotten to the point that when I wake up in the morning and after my meds take effect I get into the shower to let the hot water pound on my back to alleviate some of the pain and stiffness. Then I wash up. What am I going to do tday, I ask myself? I never have an answer because there is never anything to do. I get back in my pajamas do what little has to be done aroaund here and then I sit around. Sometimes I venture outside to weed and water my garden. Or I make a wreath or back something. Then it is still early so I sit and watch TV. Believe me there is nothing on worth watching during the day. But I watch it anyway.

I try not to complain. I try not to dwell on this stuff. But it is so very hard. I want my life to be the way it used to be. It should be the way it used ot be. I loved getting up and going to work. Not I feel useless.

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

I am being treated by a new rheumatologist here in SC. He keeps telling me that I do not have Lupus because my ANA is consistently negative. When I was living in NY my rheumatologist there believed that I did, in fact, have Lupus even though my ANA was negative. It was diagnosed via a biopsy when they removed my diseased gall bladder. This new rheumi only agrees with this diagnosis because he (as fate would have it) know my previous NY rheumi. They did their internship together. But, he still does not believe that Negative ANA Lupus exists.

I have a lot of what is discussed below. Especially antiphisiploid antibody syndrome and Lupus Cerebritis.

There are a number of theories regarding this. Here are a few from the following web sites:

http://www.hss.org/professional-conditions_13436.asp

This one concludes that.....
The answer to the question, "Does ANA-negative lupus exist?" is technically "yes", with a large number of buts, and ifs, and whens. Another answer is that the question is not very important. It is never critical to say definitively that a given patient does or does not have lupus. What is important is to evaluate the current symptoms, to put the symptoms into an overall context that includes blood tests, duration of symptoms, other illnesses, and medications, and to develop a treatment plan based on the total information rather than on a blood test alone.

http://www.uklupus.co.uk/dwallace.html

The Lupus Site Exclusive - Interview with Daniel Wallace, M.D.
Daniel Wallace is the author of the hugely successful 'The Lupus Book', and is considered to be one of the world's leading lupus specialists.

Q - I often get emails from people who have negative blood tests (e.g. ANA, anti-ds DNA), and have therefore been told that they have not got lupus. What are your thoughts on this matter, does a negative test on one occasion necessarily mean that lupus can be ruled out?
A - ANA negative lupus is only seen in discoid lupus, antiphospholipid syndrome and patients who have had so much steroids or chemotherapy that their test becomes negative. Anti DNA is present in only half with lupus and is not definitive.

http://www.healthboards.com/boards/showthread.php?t=644293

lupus cerebritis?!?
I am 33 years old and have been sick for the last 12 years. I catch everything going around but on top of that I have been hospitalized more times than I can count for pyelonephritis (severe kidney infection), infected gallbladder that was removed, aseptic meningitis 4 times, bacterial meningitis, asthma, pneumonia, shingles, severe migraines that cause dementia and/or speech problems, and on and on. I have been told I also have a brain cyst. I was recently hospitalized for aseptic meningitis however now the doctors are saying it may not have been meningitis. When my spinal fluid was taken it was clear, at that point I was told it wasn't meningitis though I had a fever, neck stiffness, and a terrible headache. An hour later, after testing, I was told I did in fact have aseptic meningitis because my spinal fluid had 636 WBC. I was admitted to the hospital for 8 days during which time doctors finally tried to determine what exactly was wrong with me. Throughout the years I have heard diagnoses of fibromyalgia, MS, Lyme disease (even tho to my knowledge I have never been bitten by a tick), etc. I was also found to have low levels of potassium & they were scared of heart failure so I was put on the heart floor & strapped to a heart monitor. I received IV potassium the entire time I was in the hospital. I was also severely anemic. My spinal fluid came back positive for herpes simplex after 5 days but I have NEVER had any type of herpes outbreak-not even a cold sore.After the hospital stay I was sent to an immunologist who ran tons of additional tests and he said I had a low C4 but a negative ANA which led him to believe I have lupus cerebritis (which he said is central nervous system lupus). He has now referred me to a haematologist and a neurologist. (He said ANA was often negative in people with CNS lupus) I feel HORRIBLE everyday. My pain scale is constantly at a 7 or higher. My head hurts nonstop, my joints ache, I run a low grade fever off and on, I have "brain fog" as I can't seem to remember anything, sensitivity to sunlight (I get sick every time I am out in it...if out to long get the meningitis like symptoms)I have numbness & tingling in my left arm & leg constantly, I trip and almost fall a lot and weakness in my left side. When my head hurts really bad I also have a tendency to talk "gibberish". I hear normal words coming out however my family hears "gibberish" (just sounds not actual words...my mom describes it as me talking a foreign alien language)Does this diagnosis sound feasible? Anyone hear with lupus cerebritis who can tell me anything about it?I would appreciate any help you could give me....SOMEBODY PLEASE RESPOND WITH YOUR THOUGHTS...

Re: lupus cerebritis?!?
Did you book appts. with the rheumie & neurologist yet? I hope you're set to go on both. Hopefully you'll be evaluated for all possible conditions. I'm guessing (but I'm only a patient) that in addition to lupus, antiphospholipid syndrome, a blood clotting disorder, might also be in the ballpark. APS can exist "standalone", or it can co-exist with lupus. APS can cause migraines, miscarriages, low platelets, strokes, indicatives, lung problems, etc. FYI, there's a "sticky post" on APS at the top of the thread list & "stickies" on lupus, too. ("Stickies" are permanent info posts.)As far as ANA being negative in the past... In your shoes, I'd ask a lot of questions about this! e.g., 1. Can ANA rise & fall with flares? 2. Were you tested for specific auto antibodies? Or did your earlier doctors stop cold when they found your ANA was negative AT THAT TIME? (My understanding is that some doctors order the ANA *plus* all sorts of specific auto antibody tests *simultaneously*. This allows them to look all at once for the most specific lupus blood markers; for APS markers; and for the RARE instance of ANA-negative lupus. By specific auto antibodies, I mean things like anti-ds-DNA, anti-Sm, anti-Ro, anti-La, antiphospholipid, antineuronal, etc. One of the "stickies" discusses test results.)

********************************************************************************************

This is interesting reading. I suggest you click the links and read the entire web site.

I would love to hear what you guys have to say on this subject.

Sunday, January 4, 2009

Good Morning and Happy New Year! I cannot believe that it is 2009 already. It was just 1979. That was 30 years ago. That was when life was quite different for me.

At that time I was a young woman of 22. Now I am approaching 52. Geez, where did the time go?

Today I am doing a 24 hour urine catch. For those of you who do not know what that is, I have to go in a jug for the next 24 hours. It has to be stored in my frig. Ewwwwwwwwwwww But this will help the doctor find out what is going on with my kidneys. Last Monday I was at my Primary Care Doc and he took a urine sample. He found some strange bacteria in it. It had to be cultured. I have yet to find out what is going on with that. I guess the holiday screwed things up.

I'm feeling extremely fatigued. My joints are killing me. I feel like crawling up in a ball and hiding underneath the covers all day. Plus I am still having that pain in my left kidney. I wish someone would figure out what is going on.

But I cannot crawl up under my covers. I have things to do. Today will be busy.

Hugs and kisses,

LuAnne