I'm tired of being tired. 

COMMON MISCONCEPTIONS

I  have been reading http://www.geocities.com/issymissy/facts.html This is a site that I read often, but today I found this information there.  Check out the site, it's full of great Lupus information.   COMMON MISCONCEPTIONS FROM http://www.geocities.com/issymissy/facts5.html

Rheumatology, the branch of Internal Medicine specializing in the treatment of such autoimmune diseases as SLE, is a relative new-comer, having only been established in 1972. Though much knowledge has been acquired and many advancements made since that time, the vast majority of our nation's physicians not trained in Rheumatology are not up-to-date on the lastest research findings concerning Systemic Lupus. As a result, most of our health care professionals are ill-informed, creating tragic mis-diagnosis for many lupus sufferers.

Unfortunately, many physicians erroneously believe a lupus patient MUST have the "Butterfly Rash", that Photosensitivity EXCLUSIVELY produces a skin rash, and most look ONLY for LE cells, anti-native DNA, and anti-sm antibodies ~~ completely ignoring a false-positive shyphilis result. The most commonly over-looked lab test is that for the anti-cardiolipin antibody. Patients with the Lupus Anticoagulant Syndrome commonly show normal or near-normal lab results in all other respects, and usually present with symptoms different from those most widely associated with the disease. Due to this phenomenon, until an indivdual is specifically tested for the Anticoagulant Syndrome, a lupus diagnosis remians elusive.

In addition, many physicians are unaware that normal or near-normal lab results CANNOT eliminate a lupus diagnosis in a patient with reports of extensive systemic complaints. Even fewer physicians realize that fluctuating laboratory results in a lupus patient are not necessarily in direct proportion to disease activity. It is possible for a patient with the Anticoagulant Syndrome to suffer a stroke, (or TIA) while Sedimentation Rate, blood compliments, spinal fluid, and anti-DNA may all be normal. Individuals with SLE will, from time to time throughout the course of their disease, have ANA (Anti-Nuclear Antibodies) results ranging from very low titers to high titers, and can even have negative results in the height of illness. However, perfectly healthy individuals can have a positive ANA, so this alone cannot establish a lupus diagnosis. Because of inadequate education in SLE, many physicians will not even think to test a patient for lupus -- especially a man or child -- while others are too quick to give a lupus diagnosis without adequate findings. It is believed by some Rheumatologists that many patients who have been diagnosed with Systemic Lupus actually have Fibromyalgia (FM) instead. While FM can be quite functionally-disabling, and it shares many symptoms with SLE, FM does not cause organ damage and it is not life-threatening.

While low platelet and white cell counts are listed among the diagnostic criteria, many physicians are unaware that elevated platelet and white cell counts can be indicative of "Vasculitis" ~~ a secondary condition which is quite common in SLE. In fact, a great majority of lupus symptoms can be traced to this vascular conditon, especially in those patients with the Anticoagulant Syndrome.

Another mis-conception is that lupus patients who suffer Central Nervous System (CNS) involvement will always show the presense of anti-native DNA antibodies. While this antibody certainly leads to a definite CNS diagnosis, there remain a great many lupus patients without this antibody who display CNS involvement. It has recently been discovered that cognitive dysfunctions can also be traced to to low-levels of oxygen in the blood, especially in those in who experience such vascular disorders as migraine headaches, Raynaud's Phenomenon, and the Anticoagulant Syndrome. This is thought to be a result of restricted blood flow to the brain due to inflammation of blood vessels. While 50% of lupus patients have the anti-DNA antibody, as many as 75% report cognitive impairments.

I read in Christina's Journal this morning about the word adapt.  Please check it out.  This has been going through my mind a lot lately.  Learning how to adapt.  How things are different now.  How other's think giving me "Loving Advice" helps.  Christina has hit the nail on the head.  Thank you Christina.

7 Things I plan to do before I die:
 
1.  Have my own home.
2.  Have a real honeymoon.
3.  Renew my wedding vows.
4.  Move to South Carolina.
5.  Watch my children marry and have children.
6.  Retire with my hubby within the next 10 years.
7.  Travel around the country a bit (Val, I stole this one.)
 
7 Things I can do:
 
1.  Have faith.
2.  Be a good mother (Another one stolen from Val.)
3.  Bake
4.  Smile
5.  Write
6.  Give advice and support to those I love.
7.  Love
 
7 Things I can't do:
 
1.  Deal with liars
2.  Understand hate.
3.  Have too much energy (Another one from Val).
4.  Get confused, it makes me disoriented.
5.  Do housework anymore.
6.  Fix anything.
7.  Sleep

7 Things that attract me to the opposite sex:

1.  Compassion
2.  Understand my humor
3 Humanity
4.  Morals
5.  Eyes
6.  Smile
7.  Strong hands

7 Things I say most often:

1.  Okaaaaaaaaay
2.  I’m hurting
3.  I’m tired
4.  I can't remember.
5.  What?
6.  Huh?
7.  I don’t understand

7 Celebrity Crushes:  Sorry I don’t have any.

7 People I want to do this:

Loretta

Karyl

Christina

Jazz

Linda

Jackie

Beckie's Bright Beginnings

Tracey

Remembering the victims of September 11th

Following in Krissy's footsteps and remembering 911, I am dedicating my journal entry today to remembering that tragic day in 2001.  The day the world stood still.  I am both sad and honored.  Sad for the thousands who perished that day.  Honored to be an American.

While the storm clouds gather far across the sea,
Let us swear allegiance to a land that's free,
Let us all be grateful for a land so fair,
As we raise our voices in a solemn prayer:

God Bless America.
Land that I love
Stand beside her, and guide her
Thru the night with a light from above.
From the mountains, to the prairies ,
To the oceans, white with foam
God bless America
My home sweet home. 

God Bless America,
Land that I love
Stand beside her,
And guide her,
Through the night
With the light from above,
From the mountains,
To the prairies,
To the ocean,
White with foam,
God bless America,
My home sweet home.
God bless America,
My home sweet home.

 

MY HEARING

Good Morning My Friends!  I'm sitting here with a horrid headache.  I've had it since my hearing on Thursday.  I suppose that the stress is getting to me.

I couldn't tell how my hearing went.  The judge didn't have any recognizable facial expressions.  Although, he did ask many questions.  Which, I answered honestly.  He was very impressed with my list of medications.  Commenting on how strong some of them were.  I ended up crying when he asked me about the circumstances that lead up to my suicide attempt.  All I could get out was that things were changed.  My life is changed.

My attorney had Gary testifiy as to what my daily life is about.  Gary told him about my confusion and inability to do the things I did before.  How I get lost.  My husband ended up sobbing through the testimony.  This touched my heart.  I always knew that Gary understood my illness and has been here for me.  But seeing him sob broke my heart.

My attorney was great.  He said some very strong stuff.  He told us that even though he cannot say for sure how it went, he is confident it went well.

I will know in a few weeks what the outcome is.  I believe the decision will be favorable.  Please continue to pray for me.  Thank you so very much.