LUANNE'S LIFE LIVING WITH LUPUS

Dear Grandma

2011-05-18T06:49:00.000-07:00

Dear Grandma,

It's almost been 10 years since you left us to be with The Lord. I am still, after all of this time, getting used to life without you. And, without Grandpa. You two were my heros. My confidants. The vision of who I wanted to become. I hope I have made you proud.

Life has changed so much since you left. I feel a little lost. You wouldn't be proud of the way things have turned out. I am very sure that you would have quite a lot to say. I wish I knew what that would be. Or, maybe I do know.

No one was there for me the way you were. I believe, without a doubt, that I am who I am today because of you.

"Nobody can do for little children what grandparents do.Grandparents sort of sprinkle stardust over the lives of little children." ~Alex Haley

It saddens me that my children will not get to learn from you the way that I did. But I will do my best to make you proud and teach them the way you taught me.

Please give Grandpa a big hug. I know you were not one for hugging, but now that you are in heaven with The Lord, I think you hug all the time.

I love you so much.

LuAnne

At the Supermarket

2010-08-31T09:55:00.000-07:00

Okay, picture this in your mind.

This past Saturday my son tells me that he would like to take the family out to dinner.

Why, you ask? You know you are wondering.

My son thinks that I shouldn't have to cook. Especially when because Lupus has once again reared it's ugly head and started pounding on my body. It's part of my life that I have come to accept. Most of the time.

At this point, he is great in my eyes. He always is.

We go to the all you can eat Chinese buffet. I am very happy. Can hardly walk upright, but very happy.

I must take advantage of the "ALL YOU CAN EAT" part of this and stuff my face. We have a very nice dinner. All 5 of us.

But, since I am already out, I believe that I must at least get to the supermarket after dinner to get some things we NEED in the house (now keep that word NEED in your memory for a bit.)

So we go to Ingles. We get two cases of bottled water, low fat ice cream sandwiches for my hubby, and I forget what else. We pay. I remember I NEED cigarettes (yes I said NEED.) Hubby and the rest of them take the packages to the car. I am in my glory because other people are dealing with the package situation. Yes, it's a situation when you can hardly walk upright.

I proceed to Customer Service to get the cigarettes I NEED. Picture this scenario.....

Behind this monumental structure they call Customer Service, there are three individuals behind the supposedly bullet proof glass. A structure that reminds me of the Pope Mobile. I proceed to say.......

One carton of MARLBORO LIGHTS 100 BOX Please. No one responds. I suppose that bullet proof glass gives them some sort of misdirected sense of anonymity. I don't really know. I ask again....... May I have one carton of MARLBORO LIGHTS 100 BOX please.

I digress........ In my twisted sense of reality, I smoke lights because I probably believe that lights are better than regular strength. I know it's not true, but hey it makes me feel better that I do indulge in this "disgusting habit." I like to smoke and in my mind it's either MARLBOR LIGHTS 100 BOX or crack.

Back to Ingles..... I am still not being heard so I ask again ......... May I have one carton of MARLBORO LIGHTS 100 BOX please. I don't remember if this is the third or fourth time I have asked. I am getting anxious. I even have a coupon.

Then as if out of nowhere, someone in a crisp, green Ingles smock is standing beside me. I am thrilled. Maybe she can hear me?

I go on to ask her............ Is there a sound barrier between me and them. I point to the three, who are still chatting and not seeing me or hearing me. They do, in fact, see her. Maybe it's her smock? Who knows?

She motions to them. They ask me if they can help me. Three people to get me a carton of cigarettes seems a little extreme to me. But after all they are cigarettes and I do NEED them.

I ask again.......... May I have one carton of MARLBORO LIGHTS 100 BOX please. I add I have a coupon too. Someone retrieves the cigarettes. I am thrilled. I am handing one of them my coupon.

This was not the person who retrieved the cigarettes. He looks perplexed. I motion to the other "customer service" person who still has my cigarettes in her hand but is still holding what must be an important conversation. I cannot hear what it is because of the sound barrier.

Finally, they appear to get in sinc. They are all ringing me up. I ask, just to make sure..... Those are 100 box? I get a yeah. I hand my coupon to the person who looks the most in charge and pay. I leave.

I get home and the cigarettes are not 100s.

2010-04-02T07:03:00.000-07:00

The birds are singing outside. Normally this sound would make me feel full of life. But not today. The last few days have been horrific with Lupus flaring it's ugly head once again. They tell me that there is no rhyme or reason for what makes it flare. Check out the Lupus Foundation website to know more about his disease. So many things have happened during the last few months, no wonder my body is retaliating. Everyone tells me to forget about these things. Easier said than done. Believe me I don't think that I am a drama queen. I would much rather things be quiet and uneventful. And, if I could forget I really would. And, I don't want to go into details, that might be the first step to help me get over stuff. In any event, today I am literally dragging. As far as I know I am NOT dying. This I am sure of. But my body feels like I have been run over by a 18 wheeler. Please pray for me.

2010-03-28T12:06:00.001-07:00

http://www.facebook.com/?ref=home

2010-03-28T11:50:00.000-07:00

Check this out.

www.lupus.org/webmodules/webarticlesnet/templates/new_empty.aspx?articleid=2175&zoneid=76

2010-03-26T08:30:00.000-07:00

I am often asked why I have a blog. Why, I am asked, do I put my thoughts out there for everyone to read? I've never given a definitive answer to this question. More times than not I have skirted around the issue.

I am not ashamed of my thoughts. Nor am I concerned about what those who read this will think, say or do. If when you read this you find something that helps you. My job is done. I write what I feel. It's my life. Mine to do with as I want.

So here it is. Here is the answer. I do it for no other reason than to write. I love it. I love that I may have the ability to put my thoughts down in a way that I never imagined I could.

2010-03-25T11:46:00.000-07:00

Hey everyone. It's been quite some time since I wrote anything. I really have no reason except to say that I haven't really felt like it. I hope you all are well. Or as well as can be expected. WHAT IS HAPPINESS??? It has been quite difficult for me to understand so much. Difficult for me to be in tune with the observable facts that present themselves in my life. What makes one being feel blissful may bring about distress to another. This is the stuff that wars are started over. It appears difficult for me because I have always known that each one of us in, in fact, an individual. There are groups dedicated to an idea of how things should be done. But in those groups there are differences. This is because we still are different. Different in the way we think. Different in the way we do things. Perceive things. People are diverse. The question still remains. Can the answer be as simple as what brings a smile to our faces? Is it that straightforward? It should be. But it doesn't always happen that way. I smile when I observe others smiling. I am genuinely delighted to hear about the good things that happen to others. Oh, don't get me wrong.... I have been known to judge more times than I care to admit. We are all guilty of this. That is what makes us human. My imperfection. The list is long. But it is what it is. I do not think that I am making much sense here. Here is where I am trying to go with this....... I want to be comfortable in an imperfect world. Not to be intolerant but to be forbearing and most of all understanding. I want to submit to my limitations and those of others with a pleasing and compassionate spirit. So what is happiness? It's just the smile on a face. What puts that smile there does not matter what it is that causes those facial muscles to form that smile. As long as it is not menacing or perverse. Not cruel, just loving (you know what I am trying to get at here). I so want to love and be loved. For who you are. For who I am.

2009-05-18T07:06:00.000-07:00

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.

2009-05-12T20:18:00.000-07:00

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.

2009-02-22T05:44:00.000-08:00

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

2009-02-19T08:13:00.000-08:00

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.

2009-01-29T14:39:00.000-08:00

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.

2009-01-28T20:53:00.000-08:00

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.

2009-01-18T08:01:00.000-08:00

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

2009-01-11T04:07:00.000-08:00

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.

2009-01-07T15:39:00.000-08:00

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

2009-01-04T06:58:00.000-08:00

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

2009-01-04T05:48:00.000-08:00

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

Nothing Special

2008-11-16T08:02:00.001-08:00

Good Morning. Nothing special is going on here. I am happy that my hubby recently got a new job. He is working as an electrician. The only bad thing about this job is that he is often out of town for days at a time.

The family is great. I am feeling okay. Actually much better than I have been in a long time. I have been trying to make attempts at getting out of the house more often. Getting out in the fresh air (I just love this time of the year) seems to rejuvenate me.

I hope all of you are well and, like me, looking forward to the holiday season.

Hugs, LuAnne

THE EMPTY CHAIR

2008-10-21T03:07:00.000-07:00

THE EMPTY CHAIR

A man's daughter had asked the local minister to come and pray with her father.

When the minister arrived, he found the man lying in bed with his head propped up on two pillows.

An empty chair sat beside his bed.

The minister assumed that the old fellow had been informed of his visit.

"I guess you were expecting me, he said. 'No, who are you?" said the father.

The minister told him his name and then remarked, "I saw the empty chair and I figured you knew I was going to show up,"

"Oh yeah, the chair," said the bedridden man.

"Would you mind closing the door?"

Puzzled, the minister shut the door.

"I have never told anyone this, not even my daughter," said the man.

"But all of my life I have never known how to pray.

At church I used to hear the pastor talk about prayer.

But it went right over my head."

I abandoned any attempt at prayer," the old man continued, "until one day four years ago, my best friend said to me, "Johnny, prayer is just a simple matter of having a conversation with Jesus.

Here is what I suggest. Sit down in a chair. Place an empty chair in front of you, and in faith, see Jesus on the chair.

It's not spooky because Jesus promised,

'I will be with you always'.

"Then just speak to him in the same way you're doing with me right now."

"So, I tried it and I've liked it so much that I do it a couple of hours every day.

I'm careful though, If my daughter saw me talking to an empty chair she'd either have a nervous breakdown orsend me off to the funny farm."

The minister was deeply moved by the story and encouraged the old man to continue on the journey.

Then he prayed with him, anointed him with oil, and returned to the church.

Two nights later the daughter called to tell the minister that her daddy had died that afternoon.

Did he die in peace?" he asked.

Yes, when I left the house about two o'clock, he called me over to his bedside, told me how much he loved me and kissed me on the cheek.

When I got back from the store an hour later, I found him dead. But there was something strange about his death.

Apparently, just before Daddy died, he leaned over and rested his head on the chair beside the bed.

What do you make of that?"

The minister wiped a tear from his eye and said,"I wish we could all go like that.

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

Prayer is one of the best free gifts we receive.

I asked God for water, He gave me an ocean.

I asked God for a flower, He gave me a garden.

I asked God for a friend, He gave me all of YOU...

If God brings you to it, He will bring you through it.

Happy moments, praise God.

Difficult moments! , seek God.

Quiet moments, worship God.

Painful moments, trust God.

Every moment, thank God.

Our New Home

2008-10-14T18:09:00.000-07:00

Hiya all,
This is my very first post here at Blogger. I wanted to share some pics of our new home here in SC.

<~~~~ Main bathroom

Master bathroom below

Living room

<~~~ My daughter's room and below is her bathroom with a walk in shower. All the baths have walk in showers. The master bath has a jacuzzi tub. The hallway bath has a large 6 foot soaking tub

Lauren's bathroom

My kitchen, it's my favorite part of the house

Hallway

<~~~~~My son's bedroom.

Below is another favorite room our Den

What the $%&@

2008-06-22T23:40:00.000-07:00

As we live our life and age we supposedly learn what are called “Life Lessons.” I’m not quite sure what these lessons have given me. I am still, at age 51, in a quandary regarding most things that life throws at me.

One thing that has haunted me for a while now is whether or not I am a good person. Being chronically ill changes the way many people view you. I have for a long time now come to terms with my illness. I have accepted my limitations.

What I cannot come to terms with how this thing “Lupus” has tinted the picture of me. How others view how I go about my day is the dilemma. Why should it even matter? But it does. Big time. And it hurts. It hurts almost as much as this illness does.

At least twice in the past month I have had to defend myself to those who lack any understanding. It has occurred to me that for the past two weeks I explain, rationalize or even better justify how I am living my life, And, it sucks.

No one knows better than I do how much my life has changed since “the diagnosis”. No one grieves more than I do for what (as my dear friend Loretta calls it) “Ms. Lupus” has taken from me.

Yes, the difference in me is remarkable. I am not the same as I once was. And, as many times as I try to explain it, I am not the same woman (wife, mother, sister daughter or friend) I used to be.

So why does it hurt so much when those who are unaware berate me on the subject of what I do not do.

Consequently I have become acidic. Not because I am ill but for the reason that I am discouraged having to constantly spell out that I am sick.

Those who live their lives with a chronic illness understand what I am trying to say here.

Having to explain why I cancel plans, yada yada yada.

As if I had a choice to become sick. As if there were a list of things presented to me and I chose to be ill.

Those of you who cannot understand what goes on in my body on a daily basis please stop berating me. It hurts. And, just so you understand something I not only have Lupus I have Rheumatoid Arthritis, Hughes Syndrome as well as many of the other crap that goes along with auto immune diseases. Again, I need to quote Loretta and say....... I am not complaining, just making a statement of facts.

Please take a moment to read from some of the following websites.

http://www.butyoudontlooksick.com/the_spoon_theory/

http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutintroduction.aspx?articleid=71&zoneid=9

http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutaffects.aspx?articleid=14&zoneid=17

http://www.womenshealth.gov/faq/lupus.htm#11

http://www.hopkins-arthritis.org/arthritis-info/lupus/

2008-03-08T07:22:00.000-08:00

I'm sorry that I haven't written an entry since my last one. I am doing okay. Not great. But better.

Thank you all for your comments and emails.

DEPRESSED

2008-01-02T05:45:00.000-08:00

I'm depressed. I am tired of feeling this way. I can't move. Can't think. Can't do a thing.

FLARE, FLARE, FLARE ~~~ BIG TIME

2007-12-30T03:57:00.000-08:00

What brings on a Lupus flare? No one (medical community) really knows what brings a flare on.

One web site says:

What can trigger lupus?

It is believed that certain things may trigger the onset of lupus or cause lupus to flare, these include- Ultraviolet light, certain prescription drugs & antibiotics, infections or viruses, hormones & stress.

There are a myriad of things that can cause a flare. I never know what is going to trigger one or when one will occur.

So right now I am hurting. I am experiencing paralyzing fatigue. My head is pounding. My mouth is full of sores. And my bowels are going crazy.

I can't take much more of this. I am going crazy.

Tags: lupus, lupus flare, lupus symptoms

LIFE IS GOOD ~~ SO WHY?

2007-12-22T03:16:00.000-08:00

Life is good. We are building our dream house. I am here in SC with my family. Holidays are wonderful because we get to spend them with my brother and his wonderful family.

So could someone please tell me why I am sad. Why am I crying all the time? Why am I so irritable?

Warfare

2007-11-30T12:57:00.000-08:00

For the last few weeks I have been battling my illness. Mostly it's the fatigue that is causing heightened problems. But, with this fatigue comes the intense pain. It's concentrated in my legs. Both bone and muscle pain. Although my hands and arms are beginning to give me fierce pain in those areas as well. Plus, I have a sinus infection and a urinary tract infection. The antibiotics are giving me horrible diarrhea.

These days I cry often. I'm really tired of this warfare that I have going on with my own body. This illness that has no cure. Walking is harder these days. Everything is harder these days.

2007-10-07T04:10:00.000-07:00

I'm still not feeling great. But, this morning I did wake up in a lot less pain. What is great is that I (at least for now) think I found a good combination of meds to help with the pain. When I tested positive for RA, my NY rheumi prescribed 750mg of Nabumetone. I take two in the morning and two in the evening before bed. I hadn't been taking some of my pain meds. I couldn't handle the grogginess. This med is not a narcotic. Nabumetone is a nonsteroidal anti-inflammatory drug (NSAID) effective in treating fever, pain, and inflammation in the body. Nabumetone is used for the treatment of inflammation and pain that results from rheumatoid arthritis and osteoarthritis.

Here is more info on this med: http://www.medicinenet.com/nabumetone/article.htm

Taken with two 5 mg Oxycodones I feel so much better. It's only been one or two days with this combo and I really hope it lasts. I hope it last just enough for me to get my life back.

What gets me about these things I have is that it not only affects me, it affects everyone around me. Everyone's life has changed since I got sick. My family has had to pick up the slack here. My inability to do things has always bothered me. But, it bothers me more now because even though Gary comes home every night from building our house like a cripple, he still has me as his top priority. As much as he is hurting or is tired, he still has no problem doing stuff here. I feel horrible leaving anything for him. Unlike NY, here there is no delivery of food. No ordering Chinese or Towne Deli subs. No good pizza. He doesn't stop to eat during the day therefore I want to make sure there is a home cooked meal for him when he gets home.

The thing that upsets me the most is lately my mood has been very tense. You see when my lupus flares it's as if my brain is surrounded by this dense, crazy fog. I lose all ability to verbalize rationally. I get snippy and short tempered. I lash out. I wish that I was able to control it, but I can't. Even though I apologize it hurts me that I hurt those that I love. This causes me be depressed. Don't get me wrong I don't feel sorry for myself, I feel sorry for those I am hurting.

What happens is that I try to think or respond and I break out in a sweat and start to shake. I hate it. I hate what it does. Today I hate these illnesses. I am so tired.

The only good thing that is happening (of course, aside from my dream house) is that for some unknown reason I am losing weight. No dieting. No watching what I put in my mouth. The pounds are just melting away. The last time I weighed myself I was down almost 60 pounds. My clothing is actually falling off of me. The other day I had on a pair of jeans that were falling off as I walked up the stairs. Maybe I will be back to my pre illness ideal weight.

I slept pretty well last night. My legs and hips did not burn as much. Pretty little actually. I only woke up three times and actually feel rested this morning.

Have a great day gentle readers. Please keep me in your prayers.

Hugs, Lu

2007-09-19T02:48:00.000-07:00

The last few days have been quite crazy. I wasn't feeling well at all this weekend. My back was killing me. I mean really killing me. I was afraid that it was because I was weaning down off the duragesic patch.

Then sometime Sunday night I was woken up with the most intense, stabbing, throbbing, killer pain in my back. It was just below my rib cage on both sides and radiated to the front. I had no clue what was going on. I ended up taking two extra pain pills and then going to the bathroom and it went away as quickly as it came. But it lasted about three hours.

I woke up on Monday morning feeling really great. I took Lauren to work, stopped by to see how the land clearing was going, stopped by to see Carol, my sister in-law, went to Walmart, the thrift store and the health food store. In the car on the way home that pain returned with a vengeance. I don't even know how I managed to get up the stairs to the apartment. But I decided to work through the pain and empty the dishwasher, make my bed, fold some clothes, etc. Then the pain intensified like 100%. Same place as the night before. I started to get a little scared as I remembered my NY rheumi telling me that he was getting concerned with my kidneys. There was blood and protein in my urine and some of the blood work came back off. Not bad enough to warrant further testing yet, but just a cause for concern and to wait and see.

Then I started feeling nauseous and vomited. In the bathroom my legs gave out from the pain and there I was laying on the bathroom floor. I couldn't manage to get up because the pain was just so intense. I called for my son for like 10 minutes but he didn't hear me. I managed to crawl into my bedroom and continued to call for him. By the time he heard me I was riling around the floor screaming in pain. The poor kid thought I was having a seizure or another stroke and called 911.

All the while in my head I kept thinking that my kidneys were failing. The paramedics arrived and took my vitals. I had a low grade fever and my blood pressure was very high. I don't remember exactly what it was but I think the top number was 180 or something like that. They brought me over to the hospital. During the 1 minute drive there the pain was mostly on my right side. He paramedic said....... classic kidney stones. He's seen it a million times.

At the hospital the doctor said the same thing. I was given something for pain and nausea and whisked off for a CAT scan. Let me tell you this, this hospital is amazing. The CAT scan results were back in less than 30 minutes. It showed my urethra was dilated and another stone in my kidney. The doctor said I passed at least two stones because I had two of these episodes. He also said the one in my kidney shouldn't give me any problems.

I feel fine now. It's amazing how quickly you feel better after passing a stone.

But this is the worst pain I have ever had in my life.

Tags: kidney stones, Palmetto Baptist Hospital

2007-09-02T21:12:00.000-07:00

I'm in another episode. I hate to call it a flare because I could (and hope to) wake up tomorrow morning and feel fine. But for the last week or so I have been feeling horrible.

I'm quite sure that it's the APS that is acting up again. My INR levels have not been therapeutic for a few weeks. First high and now low. Two visits to the ER. Two sets of blood tests and two CAT scans. One set of each for high levels and then on Saturday another set for low levels. Each time it was head pain that sent me to the ER. Also because I have yet to obtain a doctor. I do have an appointment on 10/2. Hopefully one of the physicians recommended by the the ER doc will see me this week.

What drives me crazy is that when I explain that I have APS (among my other crap) I get that look. That puppy dog head tilt thing. It's frustrating to get that look from a physician. Also, when my blood levels come back I am told that 2.2 is fine. Yup, fine for those with artificial valves but not those with APS. Again the puppy dog tilty thing.

So, this evening I scanned my medical records and found the printout from the coumadin center in NY. This printed listed all my visits, what my levels were and the daily dosages. I found a period on the printout that had the same basic levels I have now. I'll follow that dosage schedule for now.

I am so frustrated.

Antiphospholipid Syndrome (APS)

2007-08-08T05:48:00.000-07:00

Good Morning!!

I'm not feeling very well today. I believe that mostly it's the heat that has brought on this flare of sorts. We have been having record breaking temps of over 100 degrees. Aside from my usual flare symptoms, I've developed extremely bothersome rashes underneath my breasts. Therefore, I am going to stay indoors until this heat breaks. Thank God for my son who will be driving my daughter to Anderson today for her training. Thank you Sweetheart!

I want to talk a little bit about Hughes Syndrome. Otherwise called Antiphisiploid Syndrome. You can read about it at http://www.hughes-syndrome.org/.

Way before we even knew I had Lupus or RA I had fibromylagia. Then I started to experience very strange neurological symptoms. It was hard for me to explain these symptoms to my doctors. They were sort of like facial tingling but only on the left side of my face. What would happen is I would begin to feel pulling above my left cheek and this pulling would travel down the left side of my body.

Once I could put this into words my rheumi at the time asked me to remove my shirt and she examined my arms and breasts. What she saw there looked like a webbing of sorts underneath my skin. I never thought anything of this as it has been there most of my life as far as I can remember. She asked me a million questions. Questions about my pregnancies especially. Both of which had been riddled with complications. She ordered blood tests for what she called Antiphisiploid Syndrome. This doctor explained what APS was and she was sure that I had it. Sure enough the blood tests came back positive for APS and the Lupus Anticoagulant (which is not Lupus). Monthly blood tests continue to confirm this dx.

I was put on a baby aspirin a day but my symptoms continued. I was put on Plavix but still I experienced symptoms. Then I took both aspirin and Plavix. My symptoms lessened but did not disappear entirely.

Otherwise I felt fine. My fibro was pretty much under control and aside from these other symptoms which occurred only periodically I went through my life feeling fine.

I need to add at this point that during that period of time in my life, I was the perfect weight. Ate a high fiber, low fat diet. Drank at least 8 glasses of water daily. I didn't exercise regularly, but was very active and walked a lot.

One day (it was May 13, 2003, I remember that day because it was the day before my 45th birthday) on my way to work I started to feel these symptoms again. This time they were very pronounced. I was driving and almost at work so I continued on my way to work. In the elevator on my way to my office my coworker told me that I looked horrible and very pale. I worked at a nursing home and had to pass the nurse's station on the way to my office. One nurse, Pat, noticed me and sat me down. By that point I could hardly speak and was very confused. What happened after that is somewhat of a blur. All I know is that I was later told that my blood pressure was something like 210/170. 911 was called and I was rushed to the ER. Thankfully, my supervisor (the administrator of the nursing home) knew the administrator of the local hospital ER. So he called ahead and explained my medical history of APS. I was given TPA and some other IV things. My condition stabilized and was admitted.

It was decided that I needed to be on Coumadin which is a blood thinner. It is the prescribed treatment for APS. But until my INR (International Normalized Ratio ~ the level of anticoagulant/blood thinner in a person's blood) became therapeutic I remained in the hospital on a heparin IV. I think I was in the hospital for a week maybe less. It was agreed that I had a stroke.

Thankfully I was not left with any serious deficits. Minor left sided weakness and a seizure disorder which they are still not sure was caused by the stroke or the APS.

To this day whenever my INR goes too low I start to experience those symptoms. For the last five years I have had my INR levels monitored regularly. I even have a monitoring device here at home. http://protimetest.com/ It's done with a simple finger prick. I get my INR and PTT levels. But after all this time I know before hand just by the way I am feeling if my levels are too low or too high. Both of which are not good. With a low INR I am at risk for throwing a clot. An INR that is too high can cause internal bleeding. When this happens I have a headache and bruise easily. My gums will bleed when I brush my teeth.

APS has been misdiagnosed as MS. Here is a portion of the above mentioned web site:

Hughes Syndrome (APS) is sometimes called 'sticky blood syndrome'. This is because people with it have an increased tendency to form clots in blood vessels (also known as thromboses). Any blood vessel can be affected including the veins and the arteries.

The main symptoms of Hughes Syndrome can include any of the following:

Headache or migraine	Giddiness
Memory loss	Visual disturbance
Skin disorders	Thrombosis - DVTs
Heart attack	Stroke
Pulmonary embollism	Multiple Sclerosis-like features
Gastrointestinal disorders	Pregnancy problems

Only until recently (maybe a year) has my INR levels remained therapeutic. Diet and other medications can cause a person's INR (while they are taking blood thinners {not Plavix}) to become unstable. Eating too many leafy green veggies (Vitamin K veggies) like spinach lower your INR. Taking aspirin or Ibuprofen.

Because I later developed Lupus and RA and had to be on more medications my INR levels were very unstable for quite some time.

Now that we have moved and have yet to fine a doctor to take me as a patient, I have been self testing. I got the name of a doctor in the area who may be accepting new patients as well as a local Anticoagulation Center from my next door neighbor. She is also the apartment complex manager. I plan on calling them later on today.

In the Hughes Foundation web site it says that once INR levels are therapeutic symptoms disappear. I believe this to be true. I was also told that the cognitive dysfunction will not repair itself. But I am on Memantine (http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a604006.html) and it has helped to avert any further damage to my brain cells. My brain is full of lesions.

I was still convinced that I also had MS. And, after many conversations with my neurologist it was agreed that I needed further testing. My MRIs showed the lesions but she ordered a SPECT scan ( http://www.precisionradiotherapy.com/PE-SPECT.htm) which showed cerebral vasculitis but no MS.

It's important that anyone with any of these symptoms be tested. Especially if you have livedo reticularis. Here is a picture of it.

Read through the Hughes Syndrome web site. Or do a search for antiphospholipid syndrome (APS). It was very helpful for me.

Tags: Antiphospholipid Syndrome, Hughes Syndrome, Hughes Foundation, Coumadin, INR, Anticoagulation, Atypical MS Symptoms

2007-08-04T00:10:00.000-07:00

Both of my children have gotten jobs. We have only been here three weeks. This is good. Everyone appears happy.

But me. I have pushed my body to the limit. Both physically and emotionally. Now I am living in flare land. I knew it was coming but I ignored the signs. This morning I woke up a mess. Aside from the pain and fatigue, my head was/is a mess. Very foggy and confused.

I slept most of the day. I hope this doesn't last long. I've yet to find a doctor. If things continue and I still feel this sick I might just go to the ER. I think that is the simplest way to find a doctor.

On a better note, my sister's visit was really nice. It was great to see her. It was even nicer for all of us to be together. We did a lot. Last night we all went out for dinner and then to an amusement attraction. I played skey (sp?) ball. We didn't get home until about 1 am. We spent most of our time at my brother and sister in-law's house. My sister in-law, Carol, is a great cook. I was amazed the other day when she whipped up king crab legs, shrimp scampi, fried flounder and scungili in no time at all. And, it was so delicious.

I'm sure that the pace I have been keeping up these last three weeks has attributed, if not caused, this flare. If a flare is ever worth it, this one is. Because I really did have a great week.

Hugs, LuAnne

2007-07-31T04:13:00.000-07:00

Good Morning Friends!!

Yesterday's rheumi appointment did not produced positive results. It appears as if he is leaving the practice. I have been referred to another rheumi as well as a primary care physician. I'm not that concerned as I really do not have any history with him anyway. Also, while speaking with him I was informed that they do not monitor the INR of their patients on blood thinners. We attempted to call the new doctors. As far as the rheumi was concerned, their telephone was busy all day long. I'm a tad leery about that. Today I will contact the Lupus Foundation of Easley for a referral to another doctor. We did get to speak to someone at the primary care doc's office. I have to go in there first to pick up some paperwork. I plan on doing that today.

I am probably going to do an Internet search for rheumis as well.

Yesterday my entire family took a road trip of sorts. I attempted to keep up with them but the day was hot and extremely muggy. My legs started to hurt a lot and I ended up feeling tense. But I did keep up almost to the end. It was a nice day and I was happy to be with my family.

Today we plan on doing nothing much.

Hugs, LuAnne

Sunday Morning

2007-07-29T04:32:00.000-07:00

Today is a dreary day here in the Upstate. It's going to be warm and muggy most of the week with scattered thunderstorms. We keep hoping that one of these storms will send the humidity away but it keeps getting worse.

Tomorrow I have an appointment with my new rheumi. I met him in May when we were down here. He seems fine. Time will tell. He has very big shoes to fill. Not only was I used to Dr. Goldstein, but he was a great and understand MD. I knew him. But more importantly, he knew me. It took years for us to develop that relationship. I remember my first appointment with Dr. G. I had just fired my first rheumi. She was a good doctor but very overwhelmed and her staff sucked. But as my conditions became more complicated I felt as if she wasn't stepping up to the plate. I felt it was time for a new doctor. So Dr. G. was recommended. My first appointment with him lasted for over an hour. He said that is how he handles new patients. I had a zillion questions. But it was my initial statement to him and how I viewed his reaction to it that would convince me if I wanted to stay with him. I told him that I was an extremely proactive patient (I was at that time.) That I was very involved in my care. I said to him that I needed to be assured that he would be available to me when I needed him. And, that because I saw many other specialists that he didn't have any problem working with them. I also needed to make sure that his staff relayed messages to him in a timely manner.

The rest is history because I was with him for years.

This first appointment will be somewhat different. As I am more comfortable withmy illnesses. I no longer care (for lack of a better word) about what my blood work says. My position is to leave it up to the doctor. If he sees something on my blood work that needs addressing that is up to him. I no longer go to my appointments armed with lists and comments. Therefore I am in and out in record time.

My concerns now are that I am as pain and fatigue free as relatively possible. We discuss how I have been doing. He comments and makes suggestions and I accept his expertise. I get a steroid shot or two and prescriptions for my meds and I am on my way.

This new rheumi is in a practice with an internist, pain management doc, a neurologist and I think a cardiologist. This makes everything that much easier.

My only concern for this appointment is how he plans on managing my Jantoven (blood thinner - generic coumadin) levels. In NY I went to the anticoagulation center. There are a few here but not in the immediate area. A 15 - 20 minute drive. I have the blood testing machine and a mediocre supply of testing strips here at home so I can test myself if need be. But I need someone to call and report my numbers to. I would prefer not to have to drive into Greenville for each testing. In NY I would go about every two weeks. Sometimes three. In the 5 years since I have been on anticoagulation meds I went a month without testing only a handful of times. So having to drive into Greenville is the last thing I want to do. I will see how he wants to handle this. Maybe he will just want to send me for blood work monthly to check my levels. I could test myself in between if need be. Those test strips are very expensive and Medicare does not pay for them unless you have a mechanical heart valve.

That's another thing I have to think about. I need to get some sort of Medicare HMO coverage. Here in SC that insurance is called Humana. I have been reading about it and so far so good. The doctor copays are $15 and $20 for specialists. Prescription copays are $4 for generic and I think $15 for name brands. That is great compared to what I had in NY through Gary's job. Sometimes my Rx copays would be over $100 for one med. The Humana website had an Rx search thingie and all but one of my meds was covered. The methotrexate was not covered. But, it did say that for that med the physician needed to preauthorize it. But I am sure that this new doc is going to take me off of that and put me on some sort of infusion med. We talked about that when I was there in May.

So all is good on the medical front. I feel pretty good. Today is two weeks since we arrived and I can honestly say that I had to slow down and rest only two days. And, they were two separate days, not together.

My sister and her hubby arrived here last night. They are staying with my brother. We are going there to see them and have a huge family dinner late on. I am very excited as I haven't seen my sister, Kathy, in quite some time.

This move has proved to be all that I expected. I enjoy seeing my family all the time so much. My doorbell rings and it's my Mom and I love it. We haven't closed yet on the construction loan. More on that in my other journal (check the sidebar of this journal for the link to So you think you want to build a house.)

Hugs,

2007-07-23T02:22:00.000-07:00

Good Morning. Just a quick note about our move. We arrived here in SC on Sunday, July 15 at about 4 PM. We made the trip from NY in two days. Staying overnight in Virginia. The kids flew down from NY on Saturday, July 14. My brother picked them up at the airport. We are all doing well. The kids already have job interviews set up for today. Everyone is happy. We already loved it here, so living here was a no brainier. Plus, I am feeling pretty great. Good enough to have finished all the unpacking. Our furniture arrived here 6 days after we did. Everything is in place. The apartment is nice. Somewhat smaller than the house we had in NY so some furniture and many boxes had to be put in a storage room we are renting. Still waiting for a closing date. Apparently they are waiting for the appraisal. Which I don't quite understand because there is nothing there. It's just a plot of land. Oh well.

Here is a meme I stole from Dawn at http://journals.aol.com/princesssaurora/CarpeDiem/

I Live: Easley, South Carolina now.

I Work: Not outside the house as I am disabled due to my illnesses.

I Talk: to anyone and everyone!

I Wish: for way too many things.

I Enjoy: that first cup of coffee in the morning. I am a coffee snob as I really only enjoy my own coffee. Although I do love Starbucks, McDonald's and diner coffee.

I Look: with the eyes of a child.

I Find: the good in most people. Or at least I try.

I Smell: a carmel Old Virginia Wood Wick candle that is burning on top of my entertainment unit right now.

I Listen: when I am not stressed. Then I seem to lose that ability

I Hide: nothing

I Pray: too little

I Write: everything down or I seem to forget it. (Dawn I stole this one from you.)

I See: a lot and a little

I Sing: along with songs I like. Even though I have the most horrendous singing voice and CANNOT hold a tune.

I Laugh: a lot

I Can: therefore I do

I Watch: All of the CSI shows, all the Law and Orders, Charmed, Angel, Big Love, Dexter, Project Runway, America's Next Top Model and those new karaoke shows on TV.

I Yearn: for it to be this time next year. Yeah, yeah I know not to wish (or in this case yearn) my life away. But, I just want this house started and completed already.

I Daydream: a lot

I Fall: all the time. I am very uncoordinated.

I Want: to win the lottery. (he he don't we all?) (Another I stole from Dawn)

I Cry: haven't in a while.

I Burn: even if I am out in the sun for 10 minutes. Goes along with the Lupus and the reactions some of the meds I take.

I Read: not as much as I want. Ever since I got sick I cannot read as well as I used to. Oh I know how to, just can't seem to concentrate long enough to read more than one or two sentences.

I Love: My husband sooooooooo much.

I Rode: in a car yesterday, LOL

I Sometimes: want scream really loud.

I Hurt: physically more than the next person.

I Fear: not much

I Hope: that I am living my life with morals and raising my children right.

I Break: way too many things.

I Eat: not as much as I used to.

I Bathe: I'm a shower gal. Although, lately I have been soaking in the tub because it helps with the inflammation.

I Drink: COFFEE, diet green tea, sweat tea (hey I'm a Southerner now) and lately water.

I Stop: and crash

I Save: nah

I Hug: and love to be hugged.

I Meditate: nope, more like pray

I Play: no instruments. Although, I used to be able to play Beethoven's Fifth on the piano with my right hand.

I Miss: my father and my grandparents. Friends that couldn't handle me being ill. Sorry, but I don't miss New York one bit.

I Hold: onto my hubby so much lately. I couldn't survive life without him.

I Forgive: without being asked.

I Drive: everyone crazy

I Learned: not to sweat the small stuff. I don't always do it, but I try.

I Dream: vividly.

I Have: the best family and life in the world.

I Don't: think worrying about anything helps. The time spent worrying is time you lose from your life. What is going to happen is going to happen.

I Made: or make a great gravy. For those of you who don't know what I mean .... Italian's all tomato sauce with lots of meat..... gravy.

I Believe: that Jesus died for my sins. And, that if I were the only person on earth, he still would have died for me.

I Wait: way too much. Gary says I have no patience.

I Need: get my eyes checked.

I Owe: a lot to my mother. She is pretty amazing.

I Hate: prejudice.

I Feel: pretty good.

I Know: my husband loves me and I love him back.

I Wonder: what tomorrow will bring.

I Applaud: anyone who cares for the elderly and infirm.

I Love: intensely.

Tags: Easley, SC, Lupus,

Good Morning

2007-07-05T05:02:00.000-07:00

My daughter, Lauren, is sick with a bad head cold and her eyes are red and weepy. I suspect she has a sinus infection and they are draining out through her eyes. I had that a few weeks back. Yesterday I put some left over drops I had from when I had it in her eyes. But today I will take her to the doctor to get checked out. My poor baby is so miserable.

It's amazing and I am very excited. I do believe that I am over this flare. I have been feeling horrible since I had my left inguinal hernia repair about three years ago. During that time I might have had a day or two here and there where I felt okay, but always ended up feeling worse after that. But now this great feeling has been going on for a few weeks now. The only time I feel crappie is the day after I take my methotrexate. I take it on Saturday evening and always the next day I am wiped out and my stomach spasms (with all that nifty stuff that goes along with belly spasms.)

Even with my terrible sleep hygiene, I still feel good. I've tried everything I can to correct this problem, but nothing is working. I have no problem falling asleep. It's staying asleep that is the problem. I even got a Rx from my doc. He gave me Ambien. I take it when I get up during the night. It's usually around 11 or midnight. But it does nothing for me. An Advil PM works better. But not great.

I'm also weaning off of my pain medication. I wear what is called Fentanyl Duragesic patches. I was on 125 mcgs now I'm down to 50. Also, I haven't needed to take my big gun meds in quite a while. I take 200 mgs of Celebrex in the AM then again in the PM and that seems to work well.

I was afraid that with this move, new doctors wouldn't be so agreeable to prescribing such strong narcotic pain meds. I was afraid that if that happened I would end up without the meds and go into withdrawal. I tried to stop the pain meds a little while ago and did it incorrectly and ended up being admitted to the hospital with withdrawal symptoms. At that time they educated me about how to do it correctly. A pain management specialist came to see me and gave me a detailed explanation of how to wean off such strong narcotic/opiate meds. So I followed his instructions and am doing great.

Although my right foot has been really very painful. Gary and I went to see our podiatrist friend and he gave me two cortisone injections and the pain is minimal now. I just love this doctor. He has been our podiatrist for many years and we are worried that we won't find anyone as wonderful as he is down in SC.

As far as how I feel is concerned, I don't know if it's my adrenaline that is on overdrive making me feel great or the continued use of prednisione or just the end of a very long flare. What ever it is, I am happy.

As far as the continued prednisione is concerned, I am not at all happy about having to take anywhere from 15 to 20 mgs daily. I went to my yearly GYN appointment and my doctor suggested a DEXA (bone density) exam. For which I am going to this morning. My hips have been giving me problems. I should have the results before we leave for SC.

My doctors copied my medical records and I will be bring them with me. I have already seen a rheumatologist in Easley so that is taken care of. In that practice is the rheumi, a neurologist, an internist and a pain management doc. Those are who I see on a regular basis. As far as those yearly visits to the Gyn, Cardiologist, Endocrinologist, etc. I will have this rheumi recommend docs he knows.

Well, that's it for now. Except we only have 9 more days until the big move. To read all about our move to SC check out my other journal. Look for it on the sidebar under Other Journals.

IT'S BEEN A WHILE

2007-06-18T00:07:00.000-07:00

Good Morning!

It's been almost a month since I last wrote an entry in this journal. I have been so busy preparing for our move to Easley, SC . We are moving on Juloy 14th.

Also, I have been neglectful in commenting on other's journals. Please forgive me.

On June 7th I was sitting in my doctor's waiting room when I started to feel my face and upper body on the left side begin to feel tight , get tingly and go numb. I got the attention of his receptionist and she called him out to check on me. He had just finished with his patient and took me in his office. He examined me and suspected that I was having another TIA so he sent me right over to the ER. I panicked and ended up driving. Stupid I know. At the ER they took tests (blood, X-ray, CAT scan.) It was determined that my coumadin level was too low. it was 1.9. A therapeutic range for someone with APS is 3 to 3.5 so I was admitted for observation and stroke watch. I was hooked up to a heparin IV as a precaution and my coumadin (I take the generic form called Jantoven) was increased.

Needless to say I was not happy about being in the hospital. I just wanted to go home and I made everyone there aware of that fact. I was not a very good patient. But I knew that I needed to stay so I calmed down. Plus they gave me something to relax me. Which it did very well.

Now when I get admitted to the hospital I tell Gary to stay at work. It's not necessary for him to come hold my hand. It's fine that he comes after work. In the beginning when I got sick he would always leave work. It got to the point that sometimes I would be in the hospital two times a month. He always wants to leave work but now I make him wait until he gets off.

I only ended up staying overnight. Although early Friday morning I started to have some visual problems so the hospital attending doctor (they call them hospitalists now) had to be called. I heard them over the loudspeaker calling him STAT to my room. The visual disturbance only lasted an hour or so. They saw no cause to worry. But, (as those of you who are familiar with being in the hospital know) they come to draw blood a few times during the day. The Hospitalist returned to my room to tell me that my H and H was off and they suspected internal bleeding somewhere. The tech returned to take even more blood. My counts were returning to normal. But they wanted one more blood draw before they discharged me. It came back fine and I was released at 6:00 PM.

I was very happy to get home.

I'm asking all of my readers to pray for Dawn of http://journals.aol.com/princesssaurora/CarpeDiem/

Dawn has some serious health issues. Please visit her journal and offer support.

Thank you!

Shayner

2007-05-17T22:26:00.000-07:00

Throughout the past few months Lupus has taken four of our friends. These wonderful woman Valray, Melissa, Kat and Shayner were powerful forces on the Lupus Discussion Board.

They were already there when I, a frightened, newly diagnosed Lupie ventured online to find answers to this mysterious illness I was diagnosed with. These women had amazing guidance and love for all of us, not only the newly diagnosed.

I remember the me from five years ago. Lurking on the board. Afraid and unable to put my fears into perspective. Shayner took me under her wing and slowly taught me the facts of Lupus. Shayner never made light of what a horrible illness Lupus was. But she had a way of comforting me and averting my fears and misunderstanding. Shayner never failed to remind me that I was a strong woman. And, when I became severely depressed and attempted to take my own life, she became angry at me. Telling me how valuable I was. Reminding me that my life meant something. Shayner was one of the few who was responsible for bringing me out of that pit. And, for that I will be ever grateful.

During any of my many crisis, she took my hand and my heart and gently guided me to peace. In part Shayner was responsible for my growth during the last five years since my diagnosis. If not for her I believe I would still be a scared, frightened Lupie.

Now through my tears I can hear her voice. I can hear her telling me that the tales of her youth. She was ill for so long. Unlike me, Shayner was diagnosed at a young age. She was a sickly child and carried the Lupus burden with her for many of her years here on earth. But, she lived her life to the fullest.

When I told Shayner that Gary and I were going to build our own home in Easley, South Carolina she was happy for me.

She was loved. Not only by her husband, George. But by many of us. Especially me.

My friend you are so missed. There are no words that could convey the emptiness your death has left in my life. I am being selfish, yes I know. I wanted you around forever. But God chose to bring you home to him. Your time on earth was finished. You are now in heaven watching over me. Your influence will always be with me. Your advice and guidance will remain with me forever. Thank you so much for that.

Through my sorrow, your life is being celebrated. You will be greatly missed. Rest in peace my dear friend!

I love you dearly.

LuAnne

The past few days

2007-05-10T20:13:00.000-07:00

Those of you who have pre grown up children will understand this entry. Those of you who don't should try to store some of it in the back of your mind.

I can't remember if I wrote about my son's girlfriend Jacklyn living with us now. She will be moving with us to South Carolina. Jacklyn is a lovely girl. I am thrilled that my son has chosen her or should I say that they have chosen each other.

But, our home has become a little crowded. It's a nice crowded, but crowded just the same.

So, alone time for my hubby and me is at a minimum. That is why we try to schedule a few hours out of the house each week. This alone time depends upon a few factors. Mainly how I am feeling. But also upon whether or not he has to work on the weekend.

It worked out this weekend. He didn't have to work and I was feeling pretty good. Ever since I had my molar extracted which was an experience in itself. The tooth was so cracked that it ripped up my tongue. And, because of my being on methotrexate and prednisione that didn't heal. It became infected and traveled down my throat. All this even before the stupid tooth being pulled out.

The surgery itself went well. There was worry that I would hemorrhage because of being on blood thinners. There was minimal bleeding. But, as with most of us Lupies any trauma to our bodies can bring on a flare. Aside from the usual flare indicators, my spine started to become uncooperative. My legs went into spasms. The pain was excruitiating. Nothing I had in my arsenal of big gun meds would even tough the pain. I ended up on .4 mg (or was it just 4) of dilaudid. Which did the trick. The oral surgeon had given me a small amount of them after I explained my usual pain protocol to him. He gave me ten pills. I rationed them the best I could. Took my last one Friday evening.

Gary suggested that I speak to my primary care physician and ask him for a prescription of them. I am hopeful that he will give them to me. Because we all (especially him) knows what happens to my body when I start to hurt that way. One pill does wonders.

Thursday, May 10, 2007

Yesterday I ended up in the ER once again. As you know I have been having major pain in my lower back and entire right leg. Well, Wednesday morning I woke up and could not put any weight on my leg. The pain was unbearable. The pain was there all the time but if I tried to put any weight on that leg I got shooting electrical shocks up and down my leg. So there I sat in my bed trying to figure out what to do. I ended up beeping Lauren's cordless phone. She woke up and got me my meds. I took my "BIG GUN" pain meds and sat there waiting for them to kick in. No such luck. The pain seemed to be getting worse. But, at one point it appared to go away. I thanked God. But no sooner had I got done thanking Him, I lost all feeling in the leg from hip to toe including my pelvic region. It became evident that something was not right and I needed to be seen by someone. My dilemna was what to do. I called my primary care physician. He wasn't in the office yet so I got his service. Who said they would contact him. They claimed to anyway. I waited two hours for his phone call and it never came. I called back and they told me that they would give him the message as soon as the office staff was in. Apparently, the answering service operator (with her medical degree and vast clinical skills) decided that my leg was not emergency enough to contact him. Lauren and I decided to call an ambulance and I was taken to the ER.

There they did no tests. Nothing. But, wanted to make me as pain free as possible. Which they did. There explanation for the numbness was that my leg was not really numb. That it must be muscle spasms or something. At least they managed my pain successfully.

Gary took off from work today to drive me to my primary care physician. He told me something I didn't know NOT after rereading my last spinal MRI. That my lumbar spine was a mess with herniated discs. That there was no cushioning between the discs anymore. I really have no options except pain management. Epidural injections into the spine is the treatment of choice for something like this. We agreed that because I am on blood thinners this wasn't a good idea. There is a high risk of bleeding which could lead to paralysis. I'm not going to take that chance. Plus there is no guarantee that it will work.

He talked to me about maybe inserting a TENS unit. I haven't thought about this before and will be doing some research about it. (What is TENS? TENS (Transcutaneous Electrical Nerve Stimulation) is a highly effective treatment for pain using electrical pulses. How does a TENS unit work? Pads are placed on or near the area of pain. Soothing pulses are sent via the pads through the skin and along the nerve fibres. The pulses suppress pain signals to the brain. TENS also encourages the body to produce higher levels of its own natural pain killing chemicals called Endorphins and Encephalographic.)

I may consider it.

He wrote me the prescription for dilaudid. He gave me 20 4 mg pills. Which is perfect. I only need a 2 mg pill when I get such severe pain.

He was concerned because my rheumatologist keeps cutting down my prednisine to 5 mg and every time he tries to cut me down my pain level increases dramatically. He thinks I need to be on at least 10 mg daily. (I've written about his before and the damage prednisione can do.)

We leave for a two week vacation to South Carolina on Saturday morning. We have a lot to do there before we permanently move. I will try to up date my other journal on the progress we make while down there.

I am feeling so much better. Oh I still have pain but it is not as intense as it was.

I want to wish you all a Blessed Mother's Day. We will be down in SC for Mother's Day. It will be nice spending that day with Mom.

It's also my 50th birthday on the 14th. I cannot believe that I am turning 50. I am not depressed or upset about it. Just stunned. Whey they say time flies when you are having fun, they are so right.

I have a good life with my wonderful husband. He was just diagnosed with high blood pressure and put on a blood pressure pill. I have to write this again. He puts his needs and wants aside just to make sure mine are met. I couldn't have a more loving, romantic, wonderful, selfless and amazing husband.

Well, it's time to go to bed. Sleep tight everyone.

Karyl's Weather Meme

2007-04-24T15:04:00.000-07:00

This is from Karyl's Glimpses of Eternity. I met Karyl on the Lupus General Discussion board, oh it has to be four years now. Karyl is always so supportive and very upbeat. I am happy that she is my friend.

Karyl’s Weather Meme

1. What is the most beautiful weather component you’ve ever seen? While driving back from South Carolina last May the sky was an amazing blue. Blue as I have ever seen a sky.

2. What is the scariest weather component you’ve seen in person? When I was about ten or so we had a very bad blizzard. My father being the way he was, sent my sister Kathy and I out to start to shovel. The blizzard was raging with winds so strong I don't even remember the speed. All I remember is trying to get back in the house. Kathy is three years younger than I am, so she was probably about 7. She is a tiny little thing. I remember walking with her facing me and holding on to me so that the winds didn't pick her up. She must have been all of 45 pounds, if that much.

3. What’s your favorite art with weather in it? I can't think of anything right now.

4. What’s your favorite movie with weather in it? The Day after Tomorrow.

5. Favorite book with weather in it lol? Got me?

6. What type weather is your most favorite? I love it when we are all safe and sound at home and a blizzard is raging.

7. What weather makes you want to leave your state for the day when it arrives? Hot and Humid.

8. What is your weather today? Today was beautiful. I had all the windows in the entire house open.

9. What was the worst weather you’ve had this year? That NorEaster we just had.

10. When the weather is so bad you can’t go out, what favorite activity do you do inside? Cuddling on the couch with Hubby.

11. If you could order your weather, what would you order for tomorrow? 60ish, some sun and wind.

12. If your family could make the weather happen by voting, for what weather would the majority vote? The kids still like a snow day.

13. If you could have only one weather temperature and style, what would it be? High 50's, some sun and wind.

14. If you were stranded somewhere remote because of weather and could have the famous rescuer of your choice, who it would be? Horatio Kane from CSI, Miami.\

Thanks Karyl, that was fun.

NEW JOURNAL

2007-04-13T23:00:00.000-07:00

I am writing a new journal which will document our experiences while planning, moving and building our dream home in South Carolina. Please stop by and visit.

http://journals.aol.com/thebaabee/so-you-think-you-want-to-build-a/

2007-03-27T10:46:00.000-07:00

Hiya,

As many of you know I will be moving in a little over three months. There is so much to do. And, with my current health condition it's going to take a toll. I'm going to have to turn off all of my journal alerts for a while. Please don't get angry at me. I'll be checking when I can.

Wish me luck, Lu

What's in a name?

2007-03-26T05:38:00.000-07:00

I found this meme/game in Dawn's Journal.

Use the first letter of your name to answer each of the following... They MUST be real places, names, things...

NOTHING made up! If you can't think of anything, skip it.

You CAN'T use your name for the boy/girl name question.

Your Name: LuAnne

Famous Music artist/group: Led Zeppelin

3 letter word: Lip (good for kissing)

Color: Lavender

Gift/present: Lladro

Vehicle: Dawn said, DeLorean. I actually met him while working at a PR firm in the very early 80's. Actually while he was dating Christina Ferrera he sent me roses. My "L" is Litecraft, which is an RV

TV Show: Loretta Young Theater (I was about four or five and after my Mom put my sister in for a nap (she was a baby and Mom was pregnant with my brother) we would lay on the couch. She would lay on her side and I would cuddle up and rest my head on her legs. I remember sometimes her legs were stubbly, LOL. It is one of the best memories I have.

Country: Luxembourg, it's surrounded by Germany, France and Belgium.

Boy's Name: Louis (my paternal grandpa's name) I loved him dearly

Girl's Name: Lauren, of course. My precious daughter

Alcoholic drink: Lucasta Martini (a yummy blend of vanilla liquors)

Occupation: librarian (actually forensic librarian)

Flower: Lilac

Celebrity: Liam Niesen

Food: Lollipop

Something found in a kitchen: Linens

Reason for Being Late: Lupus

Something You Shout: Lupus (actually an "F" word goes before Lupus)

Try this, it's fun.

WOW, THINGS ARE MOVING SO QUICKLY

2007-03-18T05:01:00.000-07:00

I've checked off ANXIOUS on the mood indicator above, but I am feeling so many things. Happiness, excitement, joy and fear. The fear comes from the unknown. We are in New York and there is so much for us to do to get down to South Carolina. Our tentative move date is on or around the 15th of July. Before that Gary and I need to go down to finalize some stuff. Aside from the construction aspect, we need to secure temporary housing. We have a few choices for that. We can split the family up. Some of us could live with my Mom and some of us with my brother. I am pretty sure that is not how we are going to do it.

We can rent a small apartment and just rough it for the approximately six months the construction will take (I'm thinking more like 7 or 8 months). Or, we can take over my Mother's apartment and Mom can go live with my brother for a while. This may be the easier of our choices.

I would prefer to buy a small trailer and move it onto the back of the property and live there. Mom says that's how a lot of people do it. But, there seems to be some issues with that. We need to research that.

Another issue that needs to be taken care of is the matter of my medical care. Here in NY I see about 8 different medical professionals. Finding new doctors is overwhelming me. Mom's friend has a rheumatologist that she sees. I may just start out with this doctor and then if need be change. One good thing is that right in the town of Easley there is a Lupus Foundation of America. And, I am sure that I can get all the help I need from them. But, if any of my readers happens to live in the Upstate area of South Carolina (I think that encompasses Easley, Greenville and Spartenberg at the least) and has good doctors please send me an email. I really would appreciate any help on this. The most important thing that needs to be addressed prior to the move is to ensure that I can have my INR levels monitored. The INR level is the amount of anticoagulation medication that is in my blood. It needs to be monitored to make sure it remains therapeutic. That it is not too low nor too high, both can be disastrous. Even though my levels never really stay therapeuticfor long, I am spoiled where this is concerned. For the past four years I have been having my levels monitored at our local hospital. They have a anticoagulation center. I simply get my finger pricked and within moments we know what my level is. I do have one of those monitors and can order the testing strips. And, I suppose that I can call in the numbers to the center here in NY until I find one there (if there is one there.)

Then there is the matter of my pain management. I believe that a history report written by my PCP and/or Pain Management Doctor will be okay.

I plan on making an appointment to see that rheumatologist when we go down in May, just so that I can get things in place prior to the move. I am trying to keep my stress level down because one of the main flare triggers for me is stress.

In my mind I know that everything will work out the way it is supposed to. That before I know it, it will be this time next year and we will be settled in our new home.

Gary and I are always talking about the move. What we want. What we need. Our philosophy is that we are building a home, and we will put in it what we have dreamed of. I am an easy person to please. We want it to be a comfortable home. A happy place for us to start our new lives. It's going to be big. 2,800 square feet big. We are not going to cut corners but are going to be frugal in our choices. For example, where our kitchen is concerned, we will use ready made cabinetry from Home Depot. Things like that.

We will be saving a lot of money by Gary and Joseph doing most of the work.

There will be six of us living in our new home. There are the four of us. Plus Gary, Jr.'s girlfriend. It appears that this relationship is serious. Hopefully, after construction of the house we will be building a separate garage structure with an apartment above for them. My Mom will be coming to live with us. There are many reasons for this. I hate that she lives alone. For her it will be a good financial move. But, also for more selfish reasons on my part. I want to have my Mother with me. I need to have my Mother with me. We have taken many things into consideration when laying out the basic plans for the house. Mom will, of course, have her own room. In her room will be her own bathroom plus a separate sitting area. She still needs her own space. Having her own sitting area will afford her the personal space she might need. Mom can go and watch her own TV shows. Or read. It will be her own personal haven.

There will be a den for the family. I've always wanted a den area that is separate from the living room. I want a living room that has no television in it.

Our kitchen will have a pantry. No use building a kitchen that doesn't have enough space for all the things that go with a kitchen. Now our kitchen is tiny.

And, of course there will be enough bedrooms for the family and a guest room. Gary, Jr.'s room will eventually be the guest room. As soon as the garage apartment is completed.

I want to be able to give my children the opportunity to start off their married lives being able to save for their own home. With the garage apartment there for them, they will be able to save for a home. We haven't decided if we will take rent from them and save it for them or leave it up to them to save. I suspect that taking rent would be the better choice. It will get them used to having that to pay each month. And, let's face it most of us don't save what we should if left up to our own device.

As you know we have purchased land in Easley, South Carolina. We are drawing up house plans and should begin building by August. Gary and my brother, Joseph, will act as the general contractors. Most of the building will be done by them. The only things that will be contracted out are those that are either too massive to do with a small crew or those jobs that need expertise. The first thing to be contracted out will be pouring the digging out the footprint of the house and pouring the foundation.

If this entry seems garbled, well that is because I feel garbled.

There is so much to do. But, it's all good things.

Have a wonderful Sunday!

Tags: Easley, SC, Greenville, SC, Spartenberg, SC, Physicians in the Upstate Area of South Carolina, Joy

KRISSY AND JOHN

2007-03-18T04:13:00.000-07:00

Good morning all!!

I want to bring your attention (if you already don't know) to Krissy from Sometimes I Think)

I apologize for having to put in the entire web address, there is something wrong with the mouse on my lap top and I cannot drag and drop the heart.

http://journals.aol.com/fisherkristina/SometimesIThink/

John's cancer has returned. Please go over and offer words of encouragement and prayers. Krissy and John have been traveling a long and difficult road for a long time now. John has had so many complications and set backs and then when they think John is getting better their bombarded with the news that John's cancer has returned. I can't imagine what Krissy is going through. I can't even begin to understand. They were just newlyweds when John got sick. Krissy and John are two wonderful, Godly people. I am praying that God has some miraculous plan for them. So please lift them both up in prayers. The Bible tells us that...

"Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. For where two or three come together in my name, there am I with them." Matthew 18:19-20

Also here is a great commentary on this scripture.

http://grace-for-today.com/1925.htm

Thank you,

LuAnne

Tags: Sometimes I Think, Krissy, Praying

South Carolina

2007-03-10T00:10:00.000-08:00

Things here are moving so quickly.

Just this week hubby and I purchased a half acre in South Carolina. Most of you know that my Mom and my Brother (his wife and four beautiful young daughters) live there.

It was always our intention to eventually move down there to be closer to my family. The plan was to make the move in five years when hubby retires. But things have happened to make those plans come to fruition a lot sooner.

Most likely we will be down there within a year. Hubby and my brother will be building our home themselves. It's going to be a very exciting year for us. This will be our first home. I can't wait to start picking out stuff.

The city ordiance in Easley state that the home must be at least 1,800 square feet. That is really quite a large amount of space. There will be four bedrooms. Of course, the master bedroom will be a master suite. With our own bathroom and large walk in closet. I also want a great big kitchen. It isn't going to be a million dollar kitchen, but it has to be big. I'll be getting all new appliances and some new furniture too.

After the house is finished they will start working on building a two and one half car garage. Yup, that sounds silly one half car. But that space will be a workshop for hubby. Above the garage will be an apartment. It will be for which ever of my children decide to get married first. Most likely it my son will move in there.

I will write more are things progress.

Everything else is the same here. I am in a pretty significant flare. I'm still not sleeping. And, am still having horrible dizzy spells. Big bad headaches too.

Even with all these health issues I am still very happy. Very excited is a better way to put it.

Love you all,

LuAnne

PAIN (SEE DAWN'S JOURNAL)

2007-03-01T02:35:00.000-08:00

Please read Dawn's journal entry..........

http://journals.aol.com/princesssaurora/CarpeDiem/entries/2007/02/28/chronic-pain---debunking-the-myths/2595

My mood is always loopy when I am in pain. And, in pain I am. Aside from those crazy auto immune things I have going on, I also have a horrible spine. My spine is a mess. There is severe spinal stenosis going on. Anklosing Spondolytis, Degenerative Disc Disease, too. Plus, because of my blood clotting disorder APS, I have a number of blood tumors located through out the spine. These tumors, we believe, have come because of either injury (I fall down the stairs a lot), or because of the inflammatory process, or just because I have a blood clotting disorder. They are unsure if they can be removed or not. Sophisticated tests such as MRIs and CATs do not show the intricate make up of these tumors. Meaning if blood vessels, etc are entwined within them. So the only way to find out would be to go in there and take a look. Nah, I don't think so. I am not ready for anyone to poke around in my spine.

In 1975 my grandfather, who also had Anklosing Spondolytis, had extensive spinal surgery. He ended up a cripple. Now, I understand the reasons for his inability to walk. It was 1975 surgical techniques were not as sophisticated as they are now. He wasn't a very receptive patient and did not do the PT exercises necessary to keep his spine from fusing. AS was a relatively new, un researched illness at that time. But, still I am not ready to take any chances. He had a rod put in his spine. His surgery was 8 hours long. Ouch.

Plus, because of the anticoagulation therapy (Jantoven, which is a generic Coumadin) there is a protocol I need to follow before any surgery. I need to stop taking the Jantoven and go on Lovenox (which is low molecular weight heparin). With Lovenox there is a high risk of paralysis when having spinal surgery. So, I need to stop the Lovenox at least 24 hours (if not more) before the surgery. Therefore, I will be unprotected during that time. Which means I am at a high risk of throwing a clot and suffering another stroke. Or pulmonary embolism or MI. I've already had two strokes and I was lucky to have survived them with minimal damage. I was left with a seizure disorder and some left sided weakness. I am not going to push my luck.

Yes, for a normal person, there is still a risk. But it's normal risk. I am not normal. I am a science project. Yes, if I have the surgery to remove the tumors my pain will diminish drastically. I am still not ready to take the chance.

So I, monthly, visit my pain management doctor and leave with a fist full of prescriptions. I keep this monthly appointment no matter what. I don't think I have ever rescheduled. I go there sick. I go there no matter what. And, yes my body is dependent upon the meds he prescribes. But, no I am not addicted. I don't buy drugs on the street. I don't go crazy and sell my stuff to buy my meds. I take what is prescribed and have only one or two times taken more than I was instructed. I only did this after a phone call to my doctor. I am on what is called a Duragesic Patch. I take a high dosage of this. I am also given something for breakthrough pain. I think it's percocette or morphine. It's generic so I am not sure.

My Lupus pain is managed wonderfully with these meds. My back pain is another story. Not a day goes by when I can say I have no pain. The pain caused by my back woes is so intense I cry, no sob in pain usually daily. My sleep is disturbed because the pain wakes me up.

But, I go on. I do the laundry. I cook dinner. I do stuff. I just don't go out much. I just don't think it's necessary for me to go out. I don't have anything to do during the day except to go out and spend money. So, why bother. There is nothing I need to buy. We do our food shopping every two or three weeks. And, if I can't do it, my daughter and her boyfriend do it for me. They go armed with a shopping list, coupons and my Visa card. She is actually better at it than I am. She works in Pathmark so she knows all the prices. She collects coupons so she always saves lots of money. And, I think that they pretend to be a married couple doing their food shopping. How cute is that?

When I can't cook or do laundry I don't. My daughter does the laundry for the family. And, because when I do cook, I cook a lot extra we always have left overs in the frige to eat or an entire meal in the freezer. Or we order out. I have two wonderful women who come here every two weeks (or every week, if I choose) to clean my house.

Living with pain is not a choice anyone would make. Having or complaining about pain is not something most like to do. I would prefer to be able to be silent about my pain. But, I am unable to do that. My pain makes me cry. My pain makes me moan in my sleep. A few times my pain has gotten so bad (a 10 or even more) that my body has gone into contractions. My pain has caused me to have seizures. I have vomited because the pain is so bad.

So, I gladly take the pain meds and prednisione that is prescribed for me. And, I could care less if my body is dependent on them.

Thank you Dawn My Friend for bringing this to light. People need to know about chronic pain. I find it funny when people make uneducated, ignorant comments. I know one person who makes more insensitive comments than I care to count. This is the same person who after a colonoscopy took to her bed for two days. The same person who after a root canal had to lay call in sick for three days. Forget it when she gets a headache, the world ends. I just laugh, that is all I can do. Because trying to rationalize these things with her is useless. I just hope that people like this never have to suffer chronic debilitating pain. I pray that they never know what it is like. Because I believe that they COULD NOT handle it.

Those of us who suffer from this type of pain are, indeed, strong individuals. Our lives do not end. We deal and try to move on. Even when we can't we try. Our lives have changed drastically due to our illnesses and the pain that accompanies them. But, we are still strong.

Hugs, Lu

A GROWN UP SON???

2007-02-26T04:51:00.000-08:00

As many of you know, I have a son.

He is 21 years old. He is a good young man who is very responsible and self sufficient. Plus (and not just because he is my son) he is very handsome. He's tall and lean. His new look is sort of like the beatnik from Doby Gillis. If anyone can remember that show from many years ago.

There is one thing that is not good about him. He has become very disrespectful. He picks on me and answers me back. He has even hung the phone up on me. I don't understand what is going on. I know there is no underlying problem. No drug use. The kid won't even be around someone who smokes cigarettes. I am sure of this.

His disrespect fullness is getting to me big time. No matter what I say, he jumps down my throat. I've brought this up with hubby but it's no use. All I get from him is that it's my own fault. I don't see how that is possible. Because if trying to help. Or, asking a question is my fault. Then maybe it is.

How can this be possible?

I guess I should be happy that he only does this with me. With EVERYONE else he is just the perfect young man. Respectful, helpful and kind. But with me he is not. And, I am proud of him. In all areas of his life he is great. Smart and responsible.

It's gotten to the point that I am afraid to ask him a question. For fear that he is going to jump down my throat. Even when I told him how much I liked his girlfriend. And, that she seems sweet. I told him that she was cute. He yelled at me.

I have been crying for most of the morning.

It happened again this morning. He got a new dresser for his room and I asked him if there was anything he wanted me to do in there. He said, "No, just leave everything along because I have my computer stuff all over the place!" I then asked him if he had any dishes or dirty clothes in there. He jumped down my throat. "Didn't I just ask you to stay out of there?"

I just started to cry and ask him to please stop being disrespectful. I was sobbing actually. I am still sobbing. I just cannot stop.

He proceeded to leavefor work, but turned around and came up the stair and hugged me. That was nice, but I am still crying. I just don't understand what I did to deserve being treated like this.

Yeah, I get it that he is at a point in his life where he is paving his way. I get it that he is not really a grown up but trying to be one. I know that you always hurt the one you love. But I don't get this.

It's really hurting me.

Computer - Color Pyramid

2007-02-23T17:27:00.000-08:00

I saw this over at Dawn's journal. http://journals.aol.com/princesssaurora/CarpeDiem/

Things You See While at Your Computer - Color Pyramid

Name 6 red things that you see from where you sit.

1. The dust cover of The Settlement Cookbook

2. Webster's New Compact Desk Dictionary.

3. A can of Staticide Precision 2000 Dust Remover.

4. My red crocheted couch doiley.

5. The red strip along the cover of Sandra Lee's Semi Homemade Cooking 2

6. A red folder

Name 5 blue things you see from where you sit.

1. Part of the dust jacket for The Lupus Book.
2. My computer background.

3. Blue in the plaid of hubby's pjs.

4. The blue display of our Lexmark printer.

5. My dog's collar.

Name 4 green things you see from where you sit.

1. Two Vintage Meta Given's Modern Encyclopedia of Cooking Cookbooks.

2. My carpet (actually it's teal).

3. Hubby's green Carhardt zippered sweatshirt.

4. One of the colors of my Fenton Glass Clown.

Name 3 yellow things you see from where you sit.

1. The flame of my caramel wood wick candle.

2. The computer hutch light.

3. Hubby's NEC 2005 Handbook

Name 2 purple things you see from where you sit.

1. A purple ceramic eggplant in a basket (among other veggies) I made in ceramics years ago.

2. A purple Lupus bracelet.

Name 1 black thing you see from where you sit.

1. A black pen

Take My Quiz

2007-02-12T14:05:00.000-08:00

http://www02.quizyourfriends.com/quizpage.php?quizname=070212170106-296157&

Monday Morning

2007-02-12T02:59:00.000-08:00

Good Morning My Friends.

I am feeling happy this morning even though I am in pain. I have a sharp pain in my lower left groin area. I'm thinking it's my diverticulitis acting up. Who knows?

Gary was home from work this weekend. It's not all that often that he has two full days off. We hung around the house and relaxed. We were going to go to Applebee's for dinner on Saturday evening, but I ended up sleeping most of the day. I woke up at around 4 and thought that I would just get into the shower and off we would go. Nope. I could not get myself together. I was just too drained to go out. So, Gary made us some hot dogs, fries and beans. And, we ate that. It was just delicious. I love hot dogs.

Have I mentioned lately about how wonderful my husband is? I am a very lucky woman. Gary takes such good care of me. Actually he takes good care of all of us. He always picks up the slack around here. I am very proud of him and love him so much. And, for the last four years there has been a lot of slack due to my illnesses. Sometimes we get caught up in the drama of our illness that we fail to see the wonder around us. I am trying not to forget the great things in my life. My husband and two great children.

I am so proud of my children too. They are almost grown ups. Well, my son is 21 and my daughter is 19. Is that considered a grown up these days? They are very responsible young adults. I rag on them, but if the truth be told, I love to brag about them. I should tell them more often. It's not often that children these days are so in tune with the important things in life. My children are. They are respectful and loving. We all have our days, but I couldn't ask for a better family.

You know the phrase, "She is my right arm!" Well, my daughter is so much more than that. She is my body. There is no way in the world that I could get along without her. I really think that I put too much burden on her. I ask her to do virtually everything for me. And, she does it. Sometimes grudgingly, most of the time lovingly. I don't give her nearly enough credit for all that she does.

Plus she works and is going to college. She is my salvation when I am unable to do things. Which is most of the time. Thank you my dear daughter. I LOVE YOU SO MUCH! I don't say that nearly enough.

My son gave me my Valentine's Day gift early this year. It is a gift certificate to a spa. I can choose from a list of services. http://www.relaxoncloud9.com/ Of course the first thing I am going to get is a full body massage. Maybe a foot scrub or hand and feet paraffin treatments. Or even a scalp massage/treatment. I could use some facial waxing (the prednisione makes a face pretty stubby). I'm so looking forward to this. I'll be calling later on today to schedule an appointment. As soon as I decide exactly what I want, that is.

Hubby took his test on the 3rd. He said it was easier than he thought it would be. Less technical. He is pretty confident that he did well. I had no doubt. If anyone knows electrical, it's my Gary. After the test, they allowed them to write down their answers and gave them a web site to check the answer key for this test. They said to give it about 5 weeks. You know I check daily. LOL

Yesterday morning I put a turkey in the oven. If you remember, this past Thanksgiving I ordered the entire dinner from Stop and Shop and it was delicious. But, as many of the supermarkets do, for every so much you spend you get a choice of a turkey, turkey breast, ham or veggie lasagna. So, I had a free turkey in the freezer downstairs. I put it in one of those oven bags and cooked it yesterday. I didn't make all the trimmings we just picked at it all day. After I took all the meat off the bones, I put them in a pot and simmered them for a few hours. Wednesday I am going to make soup. We are expecting a big winter storm. It will be a good day for some soup. I make mine similar to the Italian Wedding Soup. Aside from the usual soup veggies I put in tiny little meatballs. I mean tiny, like the size of a marble. I'm not sure if I am going to put rice, orzo or just some elbows in it. I am looking forward to it.

Those of you who know Loretta from http://journals.aol.com/lrttklly/LupusLeftovers need to go check out http://www.cafepress.com/wingasworld . Loretta has designed some stuff like tee shirts, hats, mouse pads. I have my order already in the shopping cart ready for me to pay for. Our Loretta is a very talented artist. We already know how gifted she is at writing, now we see another side of Loretta. Loretta has been my online friend for just about four years now. This wonderful woman has, many times, been a rock and sounding board for me. She always hasvery insightful advice. And, she is very adept at just listening. Loretta is the epitome of the meaning of a friend. She knows just the right thing to say. She is sympathetic and understanding. Loretta doesn't only coddle. She has, lovingly pointed out if I am wrong. It's a rare individual who can combine all these things. Loretta is a very special woman. And, if you haven't read her blogs you are missing out on a lot. I enjoy our chats. I only wish we were closer in location so that once in a while we could chat over a cup of coffee. Loretta and I pretty much got sick at the same time. I met her on AOL's Lupus General Discussion Board. We grew into our Lupus and it's complications together. Both of us are basically homebound. I don't know how she manages. Her Little Bear is young. It's so hard being ill and having to care for a young child. Loretta and her family are always in my prayers. I am thankful for a friend like her.

Boy has this been a long entry. I have more to write but will save it for another time. For those of you who made it all the way to the end of this entry. Thank you. I just needed to write this morning.

Have a wonderful day gentle readers.

Oh one more very important thing. Please keep Krissy and John in your prayers. John has an appointment with the spleen surgeon on Wednesday. Check out Krissy's entry today, it's been quite a week for them. http://journals.aol.com/fisherkristina/SometimesIThink/

Hugs,

Proverbs 3:11-12

2007-02-01T01:57:00.000-08:00

My son, do not despise the chastening of the LORD, Nor detest His correction;

For whom the LORD loves He corrects, Just as a father the son in whom he delights.

Proverbs 3:11-12 (New King James Version)

Just felt like adding this verse this morning. Each morning I receive an email from mail a verse.com. Today's verse. You can add verses to your site. I haven't done it yet.

Add the verse to your web site:
http://www.verse-a-day.com/js/index.php

Lauren is sick. She woke up with a very bad sore throat and headache. No fever. I made her some tea. It soothed her throat some I think. My poor baby, as old as they get, they are still little kids when they are sick. I think she is coming with me to the doctor this afternoon. Pray she feels better soon.

That's it for now. Hugs, Lu

Still Feeling Like Crap

2007-01-30T13:28:00.000-08:00

First off, I have to give Dawn a great big cyber hug. http://journals.aol.com/princesssaurora/CarpeDiem/

Since I have know her, Dawn has always been a big inspiration in my life. There are times when I wake up in the morning and actually think I wish I could have an attitude like Dawn does. She always puts things into perspective. I'm trying Dawn.

Now, I am still feeling like crap. Can't seem to shake this URT infection. It's getting worse I think. I get very short of breath. I should call my doctor, I know, but I just don't feel like it. I have a follow up appt. on Thursday. Maybe I will be better by then. I'm still on antibiotics. Which has given me the start of a yeast infection. Yikes.

I am hurting. Mostly my right leg. From hip to toe. The duragesic patch doesn't even touch that pain. Or, maybe it might be that much worse without the patch. Who knows? I'm forced to take the breakthrough pain meds my rheumi prescribed. I have an appointment with my pain management doc on Thursday. Maybe he can suggest something.

Hubby will be taking a test on Saturday afternoon. For those of you who remember, he started a new job a little over a year ago. Working for the City. He has to take a test to go from provisional to permanent. I believe that he will ace this test. He is not so confident. Please say a prayer for him. I don't know why hedoesn't feel confident. The man is an electrical genius.

I have a oven stuffer cooking. I didn't stuff it. Just seasoned it and threw it into a Reynolds Oven Bag. We are going to have that for dinner with some yummy mashed potatoes and corn. And, some broccoli au grattin (sp? can't for the life of me remember how to spell this) for me and Lauren. It's a cold day and I love cooking in the oven. It just reminds me of love and family. I have been using my slow cooker a lot lately. It's really great. Mom picked up some slow cooker cookbooks for me. I bought some too. It's really easy because I can prepare everything and just set it and forget it. Eight hours later we have an entire meal. I got those crock pot liners so clean up is a snap. Also, my mother in law gave me a counter top convection oven. This works great because I can cook an entire roast beef in half the time it takes in the regular oven. I've made dozens of meals with this too. Cooking when you have a chronic debilitating illness is a challenge. When I am feeling crappie these things come in handy. I'd appreciate any recipes from you guys. I'm always up to try new things.

Well, I'm going back to lay down on the couch. I have to get up every so often because of my leg pain. It's time to go rest again.

Hugs,

LuAnne

Dawn's Meme

2007-01-26T22:00:00.000-08:00

Good evening. It's 1:24 AM. I should be in bed, but for some reason I am awake. I've been feeling sick for a few days. I have (if I wrote about this before,forgive me. It's just my Lupie Fog) an upper respiratory tract infection plus a urinary tract infection. My doc put me on antibiotics and a cough med. Hopefully the antibiotic will do the trick. I always end up with pneumonia when I get a Respiratory tract infection and a UTI usually turns into a kidney infection. These meds are going to screw up my coumadin levels. In the four years since I have started taking anti coagulants I have never gone more than three weeks at a therapeutic level. The meds I am on play havoc with my levels. Some raise the level. Others lower it. For the past week or so I've been on increased prednisione. That alone will screw up my levels. Now add the antiobiotic and you have a recipe for disaster. I suspect my level is high as I am developing purple blotches on my chest, legs and belly. I also have petechiae on my feet and calves. I have an appointment on Monday morning to have my INR levels checked.

This meme is from Dawn (http://journals.aol.com/princesssaurora/CarpeDiem/)

A Apple or PC?

We have two PCs, one Apple and three laptops

B Banking... online or in person, and if in person, drive thru or inside the bank?

Just like Dawn, I check my balances online (or via telephone), most banking is done via the drive through or sometimes at the bank (it's in Pathmark).

C Coffee and Chocolate! The two most important 'C's Favorites please.

I'm a coffee addict. Love Eight O'clock French Roast. If I am near a Starbucks I'll stop in and get a white chocolate something. And.... talking about chocolate. Has anyone ever had Godiva White Chocolate? I am dying to try Duncan Donuts White Hot Chocolate.

D Dogs. Do you have one? If yes, what kind and it's name and why you named it that. If no, then if you had one what kind would you choose?

We have Wilson. He's a black lab mix (I think Dalmatian). Willie is still a puppy at 10 months old. Talk about rambunctious. He is a "Dog Burglar". He'll steal anything that he can chew up. I lost count as to how many times I have chased him around the dining room table. He is a cutie pie.

E Elvis. There was only one. Favorite song, and if you ever or your parents ever, saw him live.

It's Now or Never. Mom loves him. I don't know if my parents ever saw him. It's possible though because they spent a lot of time vacationing in LasVegas in the 70s.

F Flowers. Do you have a favorite to receive and/or a favorite to give?

My favoriteare Lilies. I love to grow Sunflowers. I always send mixed arrangements.

G Grandparents, do you have any left and if you are one, to how many?

They are no longer with us. My maternal grandparents owned the house we lived in. It was a two family home and they lived upstairs. I called them Grandma and Grandpa Upstairs. My paternal grandparents lived a 25 minute car ride away. Hence, they were Grandma and Grandpa FarAway.

H Handy or call for help?

I can do stuff.

I IOU's any out there to a person, a friend or family?

Nope.

J Jello. Love it? Hate it? Favorite flavor? With whipped cream or cool whip or neither?

There is always room for Jello. I love it. Lime Jello with Whipped Cream. Or Cherry with Bananas inside. None of that cool whip stuff for me.

K Kiss. Do you remember your first real kiss? Where, who?

Yes. I had just turned 15. It was with SM. In front of my house. I had never kissed (made out, LOL) and I faked it. Little did I know, he had never kissed either.

L Language. Do you speak any others? Fluently or a little?

I used to speak proper Italian. My paternal grandfather was from Genoa. Now if you would ask me to speak it, I couldn't.

M Mickey Mouse or Donald Duck?

Mickey

N Neighbors. Do you know their names? Occupations? Phone numbers? Or not?

Yes. To the right, I know their names, occupations and phone numbers. To the left their names and occupations. I know most of my across the street neighbors. We are friends.

O Olympics. Do you watch? Which is your favorite winter or summer?

I love the Winter Olympics. Love to watch figure skating.

P Pluto. What is your take on the planet being downgraded?

Sorry, but I could care less.

Q Quiche. Have you ever had it? Do you like it and what is your favorite?

Love it. Broccoli with mushrooms

R Refrigerator. Name three things in your refrigerator that you think are unusual.

Suppositories, Coumadin testing materials, can't think of anything else.

S Safari. Have you ever been to Africa on one? A theme park version?

I've never been to either.

T Telescope. Have you ever looked thru a telescope?

I can't recall

U Umbrella. Do you have one and what is its design?

I have an obsession with having enough umbrellas and gloves. Three are tiny; black ones. There is one giant rain umbrella that says LuLu's on it. And, an assortment of others in various colors.

V Vintage. Do you have a favorite wine to share? Or drink?

nope.

W Willies. What gives you the willies? You know, that shudder you can't stop?

Watching medial operations on TV

X X-ray. Last one? What body part and why?

ARE YOU KIDDING?

I am always going for some kind of X-Ray. Especially during those frequent Hospital Stays. They always do a chest film.

Y Yolk. How do you like your eggs?

I like them over easy. I also love soft boiled eggs.

Z Zodiac. What's your sign and does it fit your personality, in your opinion?

I am a Taurus. But don't believe in it at all. I never read my horoscope.

Now you try. I am tagging you all.

2007-01-23T15:07:00.000-08:00

Well, the great feeling has gone. I am sick again. I am unhappy about this. Urrrggg!!!

No other words to write about this.

I want to thank Paul over at http://journals.aol.ca/plittle/AuroraWalkingVacation/ for doing an entry about how a "normal" person views others with chronic illnesses. It was very refreshing to read his entry. Not many people get it. Paul seems to though. Something he wrote was quite sensitive. He wrote about how Dawn http://journals.aol.com/princesssaurora/CarpeDiem/ looked in her mirror and saw that she needed to put her hair in a pony tail but couldn't because her hands hurt. (Dawn has Lupus and RA). It's not a simple task for those like Dawn and myself (and the countless others who blog about their illnesses. I have written about the effort it would take most days for me just to get into a shower. On worse days even the act of washing my face was the chore from hell.

I hope everyone reads Paul's entry. And, just take the time to reflect about the things that you don't think about when you are doing them. I read a story somewhere, or saw a show I don't remember about someone trying to see what it was like to be blind. They put a blindfold on their eyes and walked around for a little while. It gave them a taste of what it was like. Think about these things.

I also want to thank Paul for his suggestion to offer help. I want to make one more suggestion. Offer company. Offer to sit and have a cup of coffee (bring the coffee because it might be a day where making a pot of coffee is too much). Visit. I sit alone most days. Living in a changed life. Losing friends. I would cherish a visit from someone. Anyone. Someone to sit and talk with. Someone to make me feel like a person.

PREDNISIONE AND MY eBAY STORE

2007-01-18T05:49:00.000-08:00

I am so happy today! I feel great!

I wasn't so great at the beginning of the week. I was really hurting horribly and was fatigued and drained beyond belief.

Hubby suggested that I give my rheumi a call, but at first I said, "Why? What is he going to do except tell me to go to the ER?" and I didn't want to do that.

But, the more I thought about it, the more I realized that I might be feeling that way because of the reduction of prednisione. So, I gave the rheumi a call. We spoke through my tears and came to the conclusion to increase the prednisione to 15 mgs a day. The doc keeps trying to bring me down to 5 mgs a day and every time I get below 10 I start to flare. It's amazing how the prednisione works. There are a lot of side effects. But right now, for me, the benefits outweight the risks. And, until Rituximab is approved here in New York for Lupus, this and methotrexate is what I have to use.

Here are some:

What side effects may occur:
Deltasone may cause euphoria, insomnia, mood changes, personality changes, psychotic behavior, or severe depression. It may worsen any existing emotional instability.

At a high dose, Deltasone may cause fluid retention and high blood pressure. If this happens, you may need a low-salt diet and a potassium supplement.

With prolonged Deltasone treatment, eye problems may develop (e.g. a viral or fungal eye infection, cataracts, or glaucoma).

If you take Deltasone over the long term, the buildup of adrenal hormones in your body may cause a condition called Cushing's syndrome, marked by weight gain, a "moon-faced" appearance, thin, fragile skin, muscle weakness, brittle bones, and purplish stripe marks on the skin. Women are more vulnerable to this problem than men. Alternate-day therapy may help prevent its development.

Other potential prednisione side effects from include:
Bone fractures, bruising, bulging eyes, congestive heart failure, convulsions, distended abdomen, face redness, glaucoma, headache, hives and other allergic-type reactions, increased pressure inside eyes or skull, inflamed esophagus or pancreas, irregular menstrual periods, muscle weakness or disease, osteoporosis, peptic ulcer, poor healing of wounds, stunted growth (in children), sweating, thin, fragile skin, vertigo

(the above is from: http://www.bodynhealth.com/inflammation_prednisone.html)

Anyway, I feel pretty good. I even went out to Target yesterday and did some shopping.

MY eBAY STORE~~ http://stores.ebay.com/OCCUPY-MY-TIME

Please check it out. And, if you would, please give my store a little plug in your journal. I would really appreciate it.

I started selling on eBay to have something to do. Hence, the name OCCUPY MY TIME. I just went around the house and collected stuff that we no longer used or needed and listed them. So far I have been selling at a low level, but that is okay with me. And, when my Lupus flares, I just put the store on vacation. Or, if I happen to have a few bad days and need to ship stuff out it's pretty easy. I have a postage scale here. I can order boxes from the Post Office and they deliver them. Bubble wrap, padded envelopes, packing peanuts and packing tape are easily ordered on eBay for a fraction of the price they sell for at one of those mega office supply stores. Most of the stuff I have for sale is already partly packaged. So all I have to do is print the postage label out and slap it on the package. The USPS even comes to the house and picks up the packages. It's pretty easy. And, if I sell stuff and make a profit it gives me money in my Pay Pal account to buy stuff we need. I even have a Pay Pal Debit Master card to use to purchase stuff locally. I love it. Most of all it helps keep me sane. I miss working outside the home so much. This helps with our finances too! Check out the store. http://stores.ebay.com/OCCUPY-MY-TIME

Have a great day Gentle Readers. I love you guys for all the support and comfort you have given me through the rough times.

MY POOR HUBBY IS SICK

2007-01-11T05:14:00.000-08:00

Now, you have to know my husband to understand this. It takes a whole lot to get him to stay home from work. Today is his second day home from work. Hubby has a very bad Upper Respiratory Tract infection. I mean bad. He is coughing up a storm. He says that it feels as if his head is going to explode when he coughs. So, yesterday, off to the doctor we went. Dr. C examined him and yup, he is sick. I asked if he needed to stay home from work for a while and the doc said, YES, he needs to rest. Right now he is sleeping soundly. I heard him stirring in the bedroom about an hour ago and took that opportunity to get some of the prescription cough syrup in him. When I go back to bed in a little while I'll bring him some water and his antibiotic. I would like him to finish out the week at home, but no. He plans on returning to work tomorrow. Why, you ask? Because if he is not there on a Friday, he won't get to work overtime on Saturday. He is like that. He will never turn down working overtime. What a guy I have!!

I'm coming down with what he has. There was no way to avoid it. Dr. C. gave me a prescription for a Z pack just to have in the house. He suspects I will need it. I don't know if you remember but last year at this time I ended up in the hospital with what they thought was pneumonia. Turns out it was just a very bad case of bronchitis. I have to watch out. So, the doctor wanted to be prepared.

I am enjoying having Gary home. We both like each other's company. Even if we are just sitting around watching television, we are happy. We don't go out much and that is fine with both of us. Every once in a while we will go out to dinner. Gary said that if he feels better today maybe we will go to Applebee's for a late lunch, early dinner thing. We received two gift cards for Christmas. We'll use the Applebee's one today. Next week we will use the Outback card. We will be celebrating our anniversary next Tuesday. We will be married for 23 years. The best years of my life. Both of us always say that we can't believe how fast the time has gone by. Time flies when you are having fun.

53 Things about my hubby and one for good luck

2007-01-09T06:13:00.000-08:00

I just finished reading Dawn's journal (http://journals.aol.com/princesssaurora/CarpeDiem/) where she lists 42 (plus one for good luck) things about her hubby. I am going to follow her by listing 53 (plus one for good luck) things about my hubby.

1. He will be turning 54 this April.

2. He is four years older than me for one month.

3. I love him dearly.

4. There is no one in this entire world who comes close to being the man he is.

5. We will be married for 23 years in one week.

6. He puts up with a lot of crap from me. I'm not talking about my illness, just my craziness.

7. Speaking of my illness, he takes great care of me. He has picked up the slack and has done so gladly.

8. He tells me that he married me IN SICKNESS AND IN HEALTH.

9. His name is Gary.

10. Gary is an electrician and works for the city.

11. Gary has no idea how wonderful he really is.

12. Gary is very involved with the Boy Scouts. He has gone on almost every camping trip with our son. He belongs to committees. And, was Quartermaster.

13. I love him so much.

14. I am his third wife.

15. He had a beloved White Shepherd named Baron when he was growing up.

16. He knows how to do EVERYTHING.

17. He is an amazing father.

18. He is an even more amazing husband.

19. He has had micro surgery twice. Once to repair his hand that was almost torn off. It was stuck when a bucket truck malfunctioned. Also, the tip of his finger was crushed while he was working on the subway tracks.

20. No matter how much his hands hurt, he will give me a back massage.

21. He has a happy personality.

22. He has never smoked.

23. He doesn't drink alcohol.

24. He is a meat and potato man.

25. He cooks.

26. He used to ride motorcycles.

27. He still kisses me good night.

28. And, when he leaves for work and comes home.

29. He is one of the funniest men I know.

30. He can fix just about everything.

31. He is very handsome.

32. He is 6 feet tall.

33. He suffers from the gout.

34. Has bad knees.

35. He works very hard to take care of our family.

36. He has nice feet.

37. Everyone who meets him, loves him.

38. He has a great personality.

39. He never makes a phone call just to chat with someone.

40. Although, he calls me during the day just to see how I am.

41. When I am comfy on the couch, he makes sure if I need a drink I have one.

42. He always asks if I need anything.

43. He is my rock.

44. He is my lover.

45. He is my hero. My rock. He has strong shoulders both physically and emotionally for me to lean on.

46. He hardly ever says no to me.

47. He loves our puppy.

48. Our puppy (Wilson) goes crazy when he comes home from work.

49. He enjoys Sinatra just as much as Big and Rich.

50. He sings along to songs.

51. He is cute.

52. No matter how much he hurts, he gets up every day and goes to work.

53. He leaves an hour early for work. He has never been late to work.

54. He is very responsible.

I love him more than I could possibly say. These 54 things are only a smigin of what he is about.

My mood is happy because of him.

2007-01-07T13:21:00.000-08:00

I'm not writing in this journal as much as I used to. I thought that it was because the words didn't flow the way they once did. My mind, I would say, is not the same. Blaming everything on my cognitive dysfunction was my way out of having to make decisions. HA!!

But, in reality, my lack of journaling really only comes down to one simple fact. I could care less about My Lupus. I've just come to terms with it and it's part of my daily existence. My journaling was my way of learning. My quest at understanding. My lupus persona.

I believed that I had to embrace this Lupus crap the way I had embraced everything else in my life.

But, I was wrong. I don't have to embrace a gosh darn thing. I used to like the "I have Lupus but it doesn't have me!" slogan. I don't any longer.

It's not necessary for me to rise above Lupus. I'm a person with Lupus and most of the time it does have me. It's taken away a lot of my zest. But, who cares?

I no longer whine about it. I could you know. But, I don't. It's been too long and most are tired of hearing about it anyway. I am tired of hearing about it.

I am no longer diligent in keeping my medical appointments. There were times when I would hobble and limp. Hold on to anything to get me to the doctor's office. Now, I cancel and reschedule. Another week or two is not going to make me better. I'm not going to get better.

This is not me giving up. This is not me feeling sorry for myself. This is definitely not me whining. It's just me falling into my place in life.

I no longer care that I have Lupus. Or if that new stabbing pain behind my eye is something to be concerned about. If it is, it will reveal itself eventually. I no longer search for answers.

I just no longer care that I have Lupus. It's not my job to keep abreast of the new treatments. That is my doctor's job.

I am LuAnne.

Tags: lupus, self-pitty, medical crap, research, LuAnne

Karyl's Weight Loss Journey

2007-01-07T06:38:00.000-08:00

I would like you to check out my friend Karyl's journal. Karyl has embarked on a weight loss journey. Actually, she is a contestant in a local weight loss challenge. Drop by her journal to give her some moral support.

http://journals.aol.com/klconard1/GlimpsesofEternity/

I know that Karyl has put the weight loss bug in me. I have to do it too. Thanks Karyl and Good Luck

2006-12-16T04:17:00.000-08:00

You guys are just wonderful. Thank you so much for your words of support and comfort. Your prayers for me have been answered. The lump on my breast is some kind of fatty tumor. The sore (which is healing now) turned out to be some sort of cyst. It just so happens that when I injured myself it was on the exact spot that I had a cyst. So, that is why it looked so ugly and because of my prednisione and immunosuppressant use, it took such a long time to heal.

I am so happy. It is such a weight off my mind. I wasn't handling this well, I was very afraid. Now, I am so thankful. God answers prayers. What better time than right before the celebration of His birth.

Mom is coming up for Christmas, I am so happy. She will be here on Monday. I'm going to take a trip to the airport with our friend Pat. He is coming with me for moral support. It's not a very long drive but I can't do it alone. Maybe he will drive. That would be even better.

We are going to have a wonderful and quiet Christmas. We will stay home. I'm going to put up a huge gravy (for the non Italians - tomato sauce). I am going to pull out all the stops. I will be be putting sausage, meat balls, pieces of beef and pork and braccoli. This gravy will need to cook for hours but, if I must say so myself, I make a good gravy and the effort is worth it. We'll probably have stuffed shells or manicottis. Maybe even lasagna. Since Mom will be here we will be making three colored cookies. They are made with almond paste. Maybe even a ricotta cheese cake. I am so excited.

Most of my shopping is done. I shopped online this year. Tonight Gary and I will go over to the shopping center. There is a Target there and I just have to pick up a few odds and ends. Then we will go to Home Depot. I'm going to buy a new area rug for the living room. But first we will stop at Applebee's for dinner.

This entry is much better than my last few. I am pretty happy and looking forward to the holiday.

Again, I want to thank you all. Your comments and emails really lifted my spirits.

Thank you so much.

I

2006-12-11T06:40:00.000-08:00

I'm trying not to let my emotions run away with me. But I am having a hard time of it. Life just can't be normal. How I wish for a simple existence without any complications. I'm scheduled for a momography and ultrasound on Thursday morning. Aside from the wound on my breast, I've found a lump. Keep me in your prayers.

Who would want to be around me lately? I wouldn't if I had the choice.

2006-12-04T21:00:00.000-08:00

It's been a very emotional couple of weeks for me. As I begin to realize that I have limitations. I am trying very hard to accept this.

I had to go to my primary care doctor on Friday because I have a wound on my breast that just won't heal. I've had it for just about three months now. I injured myself (don't laugh) by getting my breast caught between two laundry baskets. THREE TIMES Two of them were on the same exact spot and this is the wound that is not healing. My doctor said I needed to get to see the breast surgeon right away, so I have an appointment tomorrow afternoon. The wound is very ugly. Raw. It's like a quarter sized crater. It's oozing clear liquid. He said that most likely it's because of the steroids and immunosuppressants that I am taking that is hindering the healing process. Boy does it hurt.

I was also told that I have a heart murmur. Apparently it's been there all the while. But, he wants a echo cardiogram done just to check it out.

As the phrase goes....... I AM SICK AND TIRED OF BEING SICK AND TIRED. It's gotten so that I cannot walk up the stairs without gasping for air. And, when I settle down I have a hard time regaining a good breathing pattern. It's not my lungs, they are clear. He believes its the murmur. Thus, his request that I get an echo.

My legs are causing me a lot of grief. Horrid pain mostly in my right leg. From hip to toe. When I get up from a sitting or laying position and try to walk it's worse and I actually feel like I have to drag that leg. Just the motion of walking makes me weak. So I am breathless and in pain. Nice combo.

I've been reading all the new journal events that come my way and I feel very jealous of most of you. Your journals are filled with joy. Mine is filled with woe. I wish it was different. There is nothing interesting to write about. For my days are all the same. I get up in the morning and each day is the same as the day before. I have become afraid to go out. Any attempt at shopping or lunching with friends leaves me devastated because I end up sweating from my head to my waist. I dread it that I have to get in the shower. That simple act drains me for the entire day. After only a few moments I have to look for something to hold on to. I guess it's time to install hand rails.

I walk with a cane. I have a prescription for a walker but haven't gone to get one yet. I keep thinking, what's after the walker? A wheelchair?

I am so sorry that my entries are so bleak lately. Maybe once we get the Christmas tree and the presents are laid out underneath it my mood will improve.

Can you believe that I am going to turn 50 next year. I think part of my somber mood is because I have lost a childhood friend. Not by death, but by her choice. She simply said that she has lost interest in me. It's been almost two years since I have spoken to her. We were born a week apart. We should be turning 50 together, but I am left missing her. I wonder if she ever thinks of what happened. Or if she misses me as much as I miss her?

Our lives change. We have no control over most of it. I am feeling very lost and isolated. I want so much to get myself out of feeling like this, but I just don't know how.

THANK YOU

2006-11-20T21:19:00.000-08:00

Thank you everyone who wrote loving and encouraging comments to my last entry. Special thanks to Guido who sent others to read and comment too.

Thanksgiving is approaching and despite this horrid flare, I have much to be thankful for.

I have a loving, caring, encouraging and amazing hubby who loves me. He always says.... IN SICKNESS AND IN HEALTH

I have two amazing children who have grown into amazing young adults.

I have a mother who is my confidant and pray warrior.

And, I have loving friends both in both real life and in my cyber life.

Thank you all!

Hospital Stay

2006-11-19T20:32:00.000-08:00

I just got out of the hospital this morning. Went in through the ER on Wednesday evening. I asked him to drive me there. I was having a series of seizures. They were unlike any that I have ever had.

It was really a productive hospital stay. They took me right into the back. The security guard wheeled me right in.

My body was contorting. Making strange movements. Nothing they pumped into me stopped this strange movements thing from happening. Until finally they shot me full of ativan. After four days of observation and testing, it was determined that because of the extreme pain my body was experiencing my body couldn't take anymore and attempted to compensate by seizing. I was aware of everything through all of this. Apparently that is possible. I thought differently, but was told that this was, indeed, possible.

I was finally sedated enough to stay still long enough to get a CAT scan and other tests necessary to find out what was going on. My seizure med was increased again and they increased the pain patch.

I ended up tripping or something. My right leg gave out while I was getting into bed. I tried to avoid falling and ended up doing something to my leg. Thank God I didn't break a hip. They wisked me right to Xray.

I am home now and attempting to get used to this new higher dose of pain patch. It makes me tired. But, it does it's job. Except for helping my right leg pain. I'll take this. It's better than the pain I was experiencing before I went into the hospital

Hugs, LuAnne

2006-11-14T08:57:00.000-08:00

It seems that all I do lately is complain about the way I feel. I just can't get back to some sort of tolerable existence. This is also affecting my mood. I am snippy and short with people. I am in so much pain I don't know what do to or how to deal with it.

2006-11-12T08:29:00.000-08:00

A mouse looked through the crack in the wall to see the farmer and his wife open a package. What food might this contain? The mouse wondered. He was devastated to discover it was a mouse trap.

Retreating to the farmyard, the mouse proclaimed the warning: There is a mouse trap in the house! There is a mouse trap in the house!"

The chicken clucked and scratched, raised her head and said, "Mr. Mouse, I can tell this is a grave concern to you, but it is of no consequence to me. I cannot be bothered by it."

The mouse turned to the pig and told him, "There is a mouse trap in the house! There is a mouse trap in the house!" The pig sympathized, but said, I am so very sorry, Mr. Mouse, but there is nothing I can do about it but pray. Be assured you are in my prayers."

The mouse turned to the cow and said "There is a mousetrap in the house! There is a mousetrap in the house!" The cow said, "Wow, Mr. Mouse. I'm sorry for you, but it's no skin off my nose."

So, the mouse returned to the house, head down and dejected, to face the farmer's mouse trap alone.

That very night a sound was heard throughout the house -- like the sound of a mouse trap catching its prey.

The farmer's wife rushed to see what was caught. In the darkness, she did not see it was a venomous snake whose tail the trap had caught. The snake bit the farmer's wife. The farmer rushed her to the hospital, and she returned home with a fever.

Everyone knows you treat a fever with fresh chicken soup, so the farmer took his hatchet to the farmyard for the soup's main ingredient.

But his wife's sickness continued, so friends and neighbors came to sit with her around the clock.

To feed them, the farmer butchered the pig.

The farmer's wife did not getwell; she died.

So many people came for her funeral, the farmer had the cow slaughtered to provide enough meat for all of them.

The mouse looked upon it all from his crack in the wall with great sadness.

So, the next time you hear someone is facing a problem and think it doesn't concern you, remember -- when one of us is threatened, we are all at risk.

We are all involved in this journey called life. We must keep an eye out for one another and make an extra effort to encourage one another.

Remember that each of us is a vital thread in another person' s tapestry. Our lives are woven together for a reason.

One of the best things to hold onto in this world is a Friend.

2006-11-08T13:00:00.000-08:00

Okay, try this.

http://kevan.org/johari?name=thebaabee

TIRED

2006-10-29T04:13:00.000-08:00

I'm tired today.

Physically tired

Emotionally tired.

Tired of this illness that has caused so many changes in my life.

Tired to others telling me that everyone gets tired.

Tired of not being able to be the me I was before I got sick

FRANKENSTEIN

2006-10-25T09:26:00.000-07:00

This is an interesting tag going around blogs recently.

I want to see what you guys are reading!!

Go ahead and try this!!

Here are the instructions...

1) Grab the nearest book.

2) Open to page 123.

3) Find the fifth sentence.

4) Post the text of the next four sentences along with these instructions.

5) Don't you dare dig for that "cool" or "intellectual" book in the back of your closet! I know that is what you are thinking!

6) Tag four or five people.

Frankenstein by Mary Shelley

“My days were spent in close attention, that I might more speedily master the language; and I may boast that I improved more rapidly than the Arabian, who understood very little, and conversed in broken accents, whilst I comprehended and could imitate almost every word spoken.

“While I improved in speech, I also learned the science of letters, as it was taught to the stranger; and this opened before me a wide field for wonder and delight.

“The book from which Felix instructed Safie was Volney’s Ruins of Empires. I should not have understood the purport of this book had not Felix, in reading it, given very minute explanations.

Now who to tag......

Nah, just do it everyone.

Hugs, Lu

2006-10-08T05:03:00.000-07:00

Good morning my friends. I hope this entry finds you all feeling well.

I'm muddling through my life lately. Most of the time not knowing which way is up or which way is down.

Lupus has been playing havoc with my body. Mostly my brain. I was in the hospital last week for a few days because I have been experiencing dizzy spells.

This hospitalization started out pretty funny because I got sick when I was right outside of the hospital on my way to visit the pain management doctor. I had parked my car in the lot and attempted to walk up the hill to the hospital. I couldn't make it and started to become dizzy. I managed to get to about 100 feet from the door when I lost my breath and started to feel faint. I sat down thinking that I could rest a bit and then go on. I couldn't. I called 911. This is the funny part.

911 Operator: What is your emergency?

Me: I need help.

911: What is wrong?

Me: I am very dizzy and cannot breathe (I was gasping)

911: Where are you?

Me: About 100 feet from the entrance of SVMC SI.

911: What street are you on?

Me: (Gasping and crying at this point) I'm on Bard.

911: What are the cross streets?

Me: I have no clue

911: Look at the street signs.

Me: I'm sitting about 100 feet from the hospital.

911: Can you get someone to help you?

Me: That is why I am calling you.

911: What is the cross street?

Me: Click, I hung up

By this point the security guard had spotted me and brought over a wheel chair for me. He brought me to the ER.

I was seen right away. They have this triage thing that they do. One moment and you will be taken in. Okay. My head is spinning and beginning to feel as if was going to explode.

My cell phone rings. This is EMS, where are you?

Me: I am in SVMC ER.

EMS: You didn't wait for the ambulance? (was this a question or not, I couldn't figure out).

Me: 911 said they couldn't send an ambulance. So I got help elsewhere.

EMS: okay

Me: CLICK

I hear my name. And, attempt to wheel myself in the direction of the voice calling my name. But, I am going in circles. The nice security guard comes to my aid. He goes in and finds out that they didn't call my name.

I wait a few more moments and hear my name again. He brings me in.

All the while I am trying to keep from vomiting because me head is hurting so much.

They do their stuff. EKG, blood, neuro exam. I fail the neuro exam. Of course, I can't keep my head up and am very weak by this time.

The ER doc said my INR level was too high. I'm being admitted.

I fall asleep.

Wake up to see I am being wheeled to go for a CAT Scan and Chest XRay.

It was as pleasant as an ER experience could be. I ask for pain meds, I get it. A big shot in my IV. If I still have a headache, I don't care now.

I got in my room quickly and went back to sleep. A nurse wakes me up. She has a lot of papers and another big shot.

I was there from Tuesday morning to Friday afternoon. My neurologist's associates come in and out visiting often. My pain management doc makes a few appearances. I'm treated well.

It ends up that I have been having increased seizure activity. My seizure meds are increased. I need to follow up with my neuro and they will do an MRI. (They have their own MRI facility attached to their office.)

I am home, very tired. With a faint headache. They held my coumadin (jantoven) while I was there. My levels are too low now. I have to follow up with the coumadin center.

Hints for a pleasant hospital experience......

Send your nurse flowers while you are still in the hospital. You become their favorite patient and they do stuff for you.

DON'T CALL 911 WHEN YOU ARE RIGHT OUTSIDE OF THE HOSPITAL, IT MAKES THE 911 OPERATOR CONFUSED.

2006-09-03T04:56:00.000-07:00

As I read Loretta's journal this morning, I sobbed.

Not for Loretta, for she has an astounding emotional ability to move on.

I cried for me.

I cried for the loss I feel.

I am unable to see the fix.

How long can I go on fighting.

Not for my life.

But for the battle in my life.

And, what a battle it is.

I long hopefully to win the battle. Just once in a while.

Which one? There are so many that plague my existence.

Lupus has declared war on me.

But, there are so many battles.

My chosen battle is PAIN.

The issue is that I am unable to gather the troops. To bring them together so that they understand what I need. (the troops being the medical community).

I thought I was winning this battle.

Well, I believed that I had found my general. He went by the name of PAIN MANAGEMENT MAN.

I am just a soldier in this battle.

But, my general has no foresight. He lacks compassion.

I sat sobbing in the chair across from his desk on Friday.

He spoke saying that he did not understand how I could still be experiencing pain.

He went on tosaythat the med I am currently on is equivalent to like 40 vicadin daily.

I asked him what his point was. He said that maybe my lupus is flaring.

I said..........Duh.

His look was priceless. His remark not so.

This may be a rheumatological problem, contact your rheumatologist.

I calmly spoke through my tears. Every word thought out carefully. Despite my anxiety at that moment.

The words were difficult to come. But, I managed to remind him of the reason I first came to see him.

You are a pain management doctor. I have pain. I first came here to have you manage my pain. Not to be given the pain medication speech.

Friday's appointment was an emergency visit. I was told to bring the rest of my fentanyl patches with me. I knew the reason for this. So, they could ensure that I was not an addict.

The next scheduled appointment is for Thursday.

He asked to see the patches I had left. Of which I had three left.

Which is the exact number I should have left. That rules out the addict theory.

And, don't think I didn't remind him of that.

Then he had an epiphany. He looked at the patches and then said....

You have the wrong patches.

Apparently it goes this way. There are three kinds of patches for the dose I am on.

The name brand.

Two generics.

One generic sucks.

The other works.

I had the one that sucked.

His attitude switched. He knew what to do to help me.

He said you need the sanyo patch.

AMAZING!

I became so angry at him. Maybe my anger should have been directed to my pharmacist. But, it was towards PAIN MANAGEMENT MAN.

I said, I'm quite happy about this at least. But, you should have asked about this prior to your previous belittling speech.

I was so upset at his minimizing attitude. Do I look like a drug addict?

I reminded him of what occurred during our first visit. That I had asked for pain site injections. I had voiced my feelings on wearing 75 mcg of fentanyl on my arm.

That I was hopeful that he would be able to effectively manage my pain. That when I call crying, it's not because I am looking for someone to decry my feelings.

So, I left there with two prescriptions. Apparently, 75 mcg is hard to acquire. Pharmacists have difficulty ordering them. I left to fill one for 25 mcg and one for 50 mcg. But, not without his comment that I may have to pay out of pocket for them since my current Rx still has 6 days left.

LOL

The new patches work better. At least I am not crying out in pain with each movement.

Pain will ever be my companion.

I should get used to it.

But, when the pain is so horrid, it's a hard task to accomplish.

So, I still cry.

Have lost the battle this week.

Not the battle on pain itself, but the battle with SUPER PHYSICIAN MAN. (or all of my physician's).

LONELY

2006-08-28T16:41:00.000-07:00

I'm depressed.

There is no doubt about it.

I have no energy or desire to do anything.

Why? Can I blame it on Lupus? I dunno.

Partly, I guess.

It's such a vicious circle living with a chronic debilitating illness.

I am so very lonely.

Conundrums

2006-08-21T17:52:00.000-07:00

I'm tired.

I'm always tired.

I can't always sleep.

If I did that I would spend all my time sleeping.

There is more to life than sleeping, right?

If I don't get the sleep my body requires then I won't be capable of doing all the more to life stuff.

Don't you just love conundrums?

2006-08-19T03:50:00.000-07:00

Good Morning!!!

I know that I haven't been writing much lately.

I've been having some major cognitive events. It's weird because it comes and goes. I feel like I can't put a thought together and then I am ok.

Strange.

My hips are still not better. There is no more reddness, but boy do they hurt. My knee, which wasn't as bad still hurts too.

My feet and calves are swollen again. And, I am still taking Lasix!

On a better note, I am having a lot of fun maintaining my EBay store. It's called OCCUPY MY TIME. Here is the link http://stores.ebay.com/OCCUPY-MY-TIME_W0QQssPageNameZl2QQtZkm.

I just love it. Check it out. I sell all sorts of nifty things. I'm adding new stuff all the time.

Well, that's it for now.

Hugs, Lu

TRY THIS

2006-08-10T12:15:00.000-07:00

I FOUND THIS IN DAWN'S JOURNAL. I WOULD SUPPLY THE LINK BUT I CAN'T GET THE LITTLE HEART TO APPEAR HERE WHEN I TRY TO MOVE IT. OH WELL. CHECK OUT THE SIDE OF MY JOURNAL FOR THE LINK TO HER JOURNAL.

Anyone else want to do it? Just copy and paste and change to your answers.
---------------------------------------

I Am a wife, mother, lover, friend, sister, daughter!

I Want to live according to God's will. It's not so easy, but having faith helps!

I Have the best husband in the world!

I Wish I never met Lupus.

I Hate Lupus.

I Fear not seeing my children married with children of their own.

I Hear the television in the background.

I Search for peace of mind.

I Wonder why some things happen.

I Regret Felice not wanting to be my friend anymore.

I Love my husband and children so much.

I Ache when someone I care about hurts.

I Always try to do what is right.

I Usually fall asleep on the couch.

I Am Not a mean person.

I Dance less than I would like to.

I Sing even though I can't hold a tune at all.

I Never lie.

I Rarely get out.

I Cry a lot.

I Am hoping to move to South Carolina within the next six years.

I'm Confused a lot.

I Need to stop smoking.

I Should lose weight.

TODAY

2006-07-11T05:09:00.000-07:00

I am feeling very crappie today. My legs are really hurting. I think it's because I really didn't sleep much. I ended up falling a sleep on and off on the couch sitting up.

But, anyway I have some stuff that needs to be taken care of today. Lauren and her boyfriend painted her room over the weekend. She needs a new area rug, a new bed, a computer desk and some sort of small entertainment center for her television, stereo and all that nifty stuff. She painted the walls and ceiling white. Not a stark white. It's called frost. I hate white walls, any kind of white. The majority of my house is painted a color called Navajo white. It's a cream color. She painted the trim in her room purple. Yup, I said purple. That's what she wanted, so that's what she got. It needs another coat. You know what happens when you paint a dark color over white.

I am sitting here waiting for the girls that clean my house to get here. They should be here a little after nine. Yes, I hired cleaning people. It is the best thing I have ever done. They take care of cleaning all the hard jobs. The kitchen, bathroom. The floors and walls. All the dusting and polishing. They even do the inside of my microwave and change the sheets on my bed. Plus they do an excellent job. Hiring them lets me use my energy for other things. Fun things.

I still cannot do the food shopping thing. Yesterday Lauren and I ran to the little supermarket to pick up stuff for dinner. We were only in there for about 20 minutes. I had such a difficult time walking back to the car. Thank God she brought the packages in. Tonight I am making chicken in my counter top convection oven. I love cooking in that and my slow cooker. Makes my life a lot easier. And, I can set it on the table and sit in a chair while I prepare meals.

I'm thinking that my legs and feet are swollen. I really can't tell if they are or not. I did the thing where you push down on a spot and see what happens. Nothing happens. But they feel so tight. My feet look enormous. I have big feetbut they are not wide. To me, right now, they look so fat. Oh well, I will see what happens.

Please have a blessed day my friends.

THANK YOU ALL

2006-07-10T20:05:00.000-07:00

To all of you who left comments for my last journal entry, I want to thank you. I hope you know how much those words meant to me. Each one of you left me very inspirational and encouraging messages.

It's so true that only those who have experienced this kind of pain and fatigue can understand.

Although, I need to include my Hubby here as well. He has been so amazing during the last few years. When I thank him, he tells me that "There is no reason to thank him. He married me in sickness and in health. It's his job to take care of me. Plus he loves me and this is what you do when you love someone."

Between him, my children and all of you out there in cyberspace my mood has improved and I am no longer hitting myself on the head and blaming me for all that has happened to me.

Whoever said that you can never know a person you meet on the net was so wrong. You guys (even those who were sent here by Dawn....thank you Sweetie) do know me.

I am very grateful for all of you. Thank you so much!

I AM A NUT JOB

2006-07-10T08:04:00.000-07:00

Good Morning Kind Readers.

Recently it was explained to me that all I ever talk about is my illness and that I never have anything good to report when I speak to her.

This puts me in a quandary because I don't know who is being insensitive here.

Is is me? Because this is pretty much the case. I don't have any good news lately.

Every time I turn around something else is happening to me. Recently, it has been my back issues.

She told me that everyone has back problems and that mine aren't that special. Like I am trying to be "special." Lord knows how much I wish I wasn't "special." You see I used to go out every once in a while with a few of the girls on a Friday night. It was fun to get out and I really wish I could do that again. It was inferred that I have no motivation any more. I was given examples of other people who have this or that and manage to get out and even go to work.

If me having to sit on the floor two Saturdays ago in Pathmark because my legs and back were in so much pain that I couldn't support myself upright any longer didn't make me feel bad, this conversation did.

Is it her that is insensitive? As far as she is concerned, I am not the LuAnne that she once knew. I am not the LuAnne who made her feel better when she was feeling overwhelmed. I am not the same friend she once had. It was even brought to my attention that I was avoiding her for some reason.

Am I giving in to the distress of my illness? Am I using it as an excuse? Gee, am I crazy for thinking this way. Of course, a person like me who was very active before my illness came to live in my body, loves sitting on the couch most of the day. I love making plans to get into the shower because having a shower takes everything out of me. Who would not love to live this way? Oh and who loves to walk around with a cane and use the scooters that the supermarkets provide for those of us who need them? Aren't they just there for kids to ride on like a trip to the Go Cart Fun Center.

Yup, I like to live like this. It is my choice. When I was a little girl this is how I dreamed my life would be. I dreamt that I would nap during the day. I imagined that I would be unable to walk up the stairs from the laundry room. That laundry would pile up for days.

Little girls don't dream of their grown up lives to be like this.

What I dream about now is being able to hop in the shower, rush and get dressed and go about my daily life.

Why doesn't anyone get it? We can't even use the "Invisible Illness" defense for this dilemma because I look like crap.

You know something that is very funny. This same person (most people really) aren't able to cope with stuff that happens to them. They get a headache and it's the end of the world. Their doctor schedules a colonoscopy and they fret for days afterwards. Take to their beds right after the camera goes up their butts. Or, have a tooth pulled, capped or a root canal and they are complaining about the pain for days and days. Then they say to me, and you think you are in pain. Amazing.

I get remarks that are so bizarre that it blows me away sometimes. Here is one example...... Someone called and told me that they needed to have a fatty growth removed from their arm. Their doctor scheduled this procedure six weeks later. It was like a catastrophe. The doctor was lax. The doctor didn't know how much she wanted to get this over with. Who was going to come to her house and help her with her family? How big would the scare be? All this after the doctor told her that there was no reason to do this procedure. But because she whined and complained he scheduled it.

It amazes me.

I still haven't learned. I still haven't learned to just say I am "okay." I still believe that people really are concerned about my health.

The end result to all of this is that I am a nut job for believing all of that.

But, I still felt bad and my mood still changed. I still cried. I've already lost two friends because I am sick. I guess I am on the road to losing another.

CHRISTIAN WAYS TO REDUCE STRESS

2006-07-07T06:27:00.000-07:00

I received this via email from motherearthgifts@aol.com and thought it was worth including it as a journal entry. You should also check out her message board at http://www.lupusmctd.com/. It's well worth it.

CHRISTIAN WAYS TO REDUCE STRESS

An Angel says, "Never borrow from the future. If you worry about what may happen tomorrow and it doesn't happen, you have worried in vain. Even if it does happen, you have to worry twice."

1. Pray

2. Go to bed on time.

3. Get up on time so you can start the day unrushed.

4. Say No to projects that won't fit into your time schedule or that will compromise your mental health.

5. Delegate tasks to capable others.

6. Simplify and uncluttered your life.

7. Less is more. (Although one is often not enough, two are often too many.)

8. Allow extra time to do things and to get to places.

9. Pace yourself. Spread out big changes and difficult projects over time; don't lump the hard things all together.

10. Take one day at a time.

11. Separate worries from concerns. If a situation is a concern, find out what God would have you do and let go of the anxiety. If you can't do anything about a situation, forget it.

12. Live within your budget; don't use credit cards for ordinary purchases.

13. Have backups; an extra car key in your wallet, an extra house key buried in the garden, extra stamps, etc.

14. K.M.S. (Keep Mouth Shut). This single piece of advice can prevent an enormous amount of trouble.

15. Do something for the Kid in You everyday.

16. Carry a Bible with you to read while waiting in line.

17. Get enough rest.

18. Eat right.

19. Get organized so everything has its place.

20. Listen to a tape while driving that can help improve your quality of life.

21. Write down thoughts and inspirations.

22. Every day, find time to be alone.

23. Having problems? Talk to God on the spot Try to nip small problems in the bud. Don't wait until it's time to go to bed to try and pray.

24. Make friends with Godly people.

25. Keep a folder of favorite scriptures on hand.

26. Remember that the shortest bridge between despair and hope is often a good "Thank you Jesus."

27. Laugh.

28. Laugh some more!

29. Take your work seriously, but not yourself at all.

30. Develop a forgiving attitude (most people are doing the best they can).

31. Be kind to unkind people (they probably need it the most).

32. Sit on your ego.

33. Talk less; listen more.

34. Slow down.

35. Remind yourself that you are not the general manager of the universe.

36.Every night before bed, think of one thing you're grateful for that you've never been grateful for before.

GOD HAS A WAY OF TURNING THINGS AROUND FOR YOU.

"If God is for us, who can be against us?" (Romans 8:31)