God's Child :)

[Smangii]

Same here, the weather's 44 degrees. ^^ the wind makes it seem like 34, though. =/

I hope my hotel has a computer I can go on, or I can convince my parents to let me bring my old laptop =/ I need something!

[hischild]

Nya,

I've been drugged! And the problem with drugged sleep is that I sleep too deeply and wake up with a headache. I woke up a while ago again and thought it was morning. I hate the confusion. I don't mind being up all night and sleep in daylight hours if it is natural. But I really hate waking up confused and with a headache.

My weather thingy says 32 @ 5:36 PM so I guess it got warmer today but I was still awake at 11AM and it was very cold. It's cold in my apt now too. And I feel like I need more sleep. This is kind of a strange thread I think.

[Nya]

Aww im sorry God's Child I have had sleeps like that even woke up with the headaches to. So I can get where your coming from.

Well I just finished making this so I want to deadicate it to you and you getting better.



Hope you feel better.

[hischild]

Nya it is beautiful. TY but I won't be getting too much better. I have lupus you see and the complications are killing me. Last year I fell and injured mt lung. After months of treatment, it was finally removed so I am o2 dependent now. If you would like, I can post more info later. Right now a friens came in and she doesn't look very happy. Later . . . .

[Nya]

Your Welcome

Oh I see. Well I happen to beleive in miracles so if you get enough people who beleive as well then Great things can be done.

But I would not mind getting to know more about it but in your own time no rush. o.O ouch hope you dont get in to much trouble God's Child.

[hischild]

Systemic lupus is what I have. The lupus itself may not kill me but the other medical problems caused by the lupus are causing me many problems. In my case, the lupus is killing off my nerves. . . neuropathy which in turns caused me to get lymphedemia. (Did I spell that right?)

The nerve problem is what is causing me great pain. My muscles don't know what to do since the nerves that control them are so messed up. When I try to walk, I can't tell where my feet are. When I try to hold something, I often can't grip it. I usually type with two fingers because my left hand doesn't work at all for fine motor skills.

Lymphedemia is why I stay in bed almost all of the time. I use a special pump thingy to circulate the fluids that are in my body. See picture of pump thingy. I only have one boot thing with goes up to my groin. I have to use it twice a day for an hour each. That is 4 hours for my legs each day. Now they are trying to get one for my arms too.

But probably the very worst part of this disease is that since my immune system doesn't work against any of the bad stuff, I am isolated from almost everyone. I am not supposed to be around people with colds or any kind of infections. I can't fight off those things at all. So infections are airborne and you guys are breathing them in everyday. If I am around those same germs that do not affect you at all, I get deathly ill. So many times I will go for weeks without seeing anyone but my doctor who makes housecalls and my aides.

I went undiagnosed for much too long and because I did, I have permanent irreversible damage to much of my body. My kidneys are always threatening to shut down. I have to use O2 because of the damage done to my lungs by repeated bouts of pneumonia, bronchitis, and allergic reactions that affected my lungs. Bottom line here is that I am allergic to myself. And before you begin to laugh, let me say that it definately isn't funny. Read a bit about what the Lupus Foundation has to say. . . . .



Lupus Foundation

DEFINITION:

Lupus is a chronic inflammatory disease that can affect various parts of the body, especially the skin, joints, blood, and kidneys. The body's immune system normally makes proteins called antibodies to protect the body against viruses, bacteria, and other foreign materials. These foreign materials are called antigens. In an autoimmune disorder such as lupus, the immune system loses its ability to tell the difference between foreign substances (antigens) and its own cells and tissues. The immune system then makes antibodies directed against "self." These antibodies, called "auto-antibodies," react with the "self" antigens to form immune complexes. The immune complexes build up in the tissues and can cause inflammation, injury to tissues, and pain.
Systemic lupus is usually more severe than discoid lupus, and can affect almost any organ or organ system of the body. For some people, only the skin and joints will be involved. In others, the joints, lungs, kidneys, blood, or other organs and/or tissues may be affected. Generally, no two people with systemic lupus will have identical symptoms. Systemic lupus may include periods in which few, if any, symptoms are evident ("remission") and other times when the disease becomes more active ("flare"). Most often when people mention "lupus," they are referring to the systemic form of the disease.

Lupus Foundation

Gene linked with susceptibility to lupus

United Press International

Tuesday, December 14, 2004


DALLAS, Dec 14, 2004 (United Press International via COMTEX) -- Texas researchers have identified a gene family involved in determining the potential for acquiring lupus, a debilitating autoimmune disease.

The University of Texas Southwestern Medical Center team studied a mouse strain that develops autoimmunity similar to human systemic lupus erythematosus. The team identified a cluster of genes, the SLAM/CD2 family, occurring in the same region of the human genome associated with genetic susceptibility to the disease.

The researchers found the genes played a crucial role in the disease's development in the mice, but only when they were expressed in specific combinations with other genes.

"The SLAM/CD2 family interacts with sets of highly variable genes, which can provide a pathway toward disease," said a team member.

In addition, the researchers linked that gene family with resistance to infectious diseases. The latest findings follow an earlier discovery by the team of four genes that can halt lupus.

Those "suppressor" genes -- Sles1, Sles2, Sles3 and Sles4 -- can block the disease even if the susceptibility gene family is active.

The findings appear in the current issue of the journal Lupus.

Many people go undiagnosed for far too long . . . especially women who are considered by male doctors to be too hormonal and hysterical. One doctor called me psycho and refused to acknowlege that there was anything wrong with me. But there is a test! The test for Lupus

ANA AKA Antinuclear Antibody test, fluorescent antinuclear antibody, FANA

The Test


How is it used?
The test is used to help diagnose systemic lupus erythematosus (SLE) and drug-induced lupus, but may also be positive in cases of scleroderma, Sjögren’s syndrome, Raynaud’s disease, juvenile chronic arthritis, rheumatoid arthritis, antiphospholipid antibody syndrome, autoimmune hepatitis, and many other autoimmune and non-autoimmune diseases. For this reason, SLE, which is commonly known as lupus, can be tricky to diagnose correctly. Because the ANA test result may be positive in a number of these other diseases, additional testing can help to establish a diagnosis of SLE. Your doctor may run other tests that are considered subsets of the general ANA test and that are used in conjunction with patient symptoms and clinical history to rule out a diagnosis of other autoimmune diseases.

When is it ordered?
Because autoimmune diseases can be difficult to diagnose, this test offers a reliable first step for identifying SLE and some other autoimmune disorders with a wide variety of symptoms. These symptoms, including painful or swollen joints, unexplained fever, extreme fatigue, and a red rash, may come and go over time and may be mild or severe. It may take months or years for these symptoms to show a pattern that might suggest SLE or any of the other autoimmune diseases.

What does the test result mean?
A positive test result may suggest an autoimmune disease, but further specific testing is required to assist in making a final diagnosis. ANA test results can be positive in people without any known autoimmune disease. While this is not common, the frequency of a false positive ANA result increases as people get older.

About 95% of SLE patients have a positive ANA test result. If a patient has symptoms of SLE, such as arthritis, a rash, and autoimmune thrombocytopenia (a low number of blood platelets), then s/he probably has SLE. In these cases, a positive ANA result can be useful to support SLE diagnosis. If needed, two subset tests, anti-dsDNA and anti-SM, can help to show that the condition is SLE. If anti-dsDNA autoantibodies are found, this supports the diagnosis of SLE. Higher amounts of anti-Sm are more specific for SLE.

A positive ANA can also mean that the patient has drug-induced lupus. This condition is associated with the development of autoantibodies to histones. An anti-histone test can be given to support the diagnosis of drug-induced lupus.

Other conditions in which a positive ANA test result man be seen include:

Sjögren’s syndrome: Between 40% and 70% of patients with this condition have a positive ANA test result. While this finding supports the diagnosis, it is not required for diagnosis. Again, your doctor may want to test for two subsets of ANA, the ribonucleoproteins SSA and SSB. The frequency of autoantibodies to SSA in patients with Sjögren’s can be 90% or greater if the test is done by enzyme immunoassay.
Scleroderma: About 60% to 90% of patients with scleroderma have a positive ANA finding. In patients who may have this condition, the subset tests can help distinguished two forms of the disease, limited versus diffuse. The diffuse form is more severe. Limited disease is most closely associated with the anticentromere pattern of ANA staining (anticentromere test), while the diffuse form is associated with autoantibodies to the anti–Scl-70.
A positive result on the ANA also may show up in patients with Raynaud’s disease, juvenile chronic arthritis, or antiphospholipid antibody syndrome, but a doctor needs to rely on clinical symptoms and history for diagnosis.
A negative ANA result makes SLE an unlikely diagnosis. Unless an error in the testing is suspected, it is not necessary to immediately repeat a negative ANA test. However, because autoimmune diseases change over time, it may be worthwhile to repeat the ANA test in the future.

Aside from rare cases, further autoantibody (subset) testing is not necessary if a patient has a negative ANA result.

Is there anything else I should know?
More specific subsets of the general ANA test are used to help pinpoint the specific autoimmune disease; these autoantibody tests include anti-dsDNA, anti-Sm, Sjögren’s syndrome antigen (SSA, SSB), Scl-70 antibodies, anti-centromere, anti-histone, and anti-RN.

Some drugs and infections as well as other conditions mentioned above can give a false positive result for the ANA test. These drugs may bring on a condition that includes SLE symptoms, called drug-induced lupus. When the drugs are stopped, the symptoms usually go away. Although many medications have been reported to cause drug-induced lupus, those most closely associated with this syndrome include hydralazine, isoniazid, procainamide, and several anticonvulsants.

More info from The Arthritis.Org DiseaseCenter

Systemic Lupus Erythematosus (sis-TEM-ick LOO-pus err-ah-theme-ahTOE-sus) is a chronic (long-lasting) rheumatic disease which affects joints, muscles and other parts of the body. Lupus involves inflammation (the immune system's response to kill foreign agents, virus, bacteria). Systemic lupus erythematosus involves chronic inflammation that can affect many parts of the body, including:

Heart
Lungs
Skin
Joints
Blood-forming organs
Kidneys
Nervous system
There are several types of lupus:

Discoid lupus affects the skin.
Drug-induced lupus occurs because of a reaction to drugs. Symptoms, however, disappear once the drugs are discontinued.
Crossover, or overlap, syndromes indicate features that overlap with another rheumatic disease.
What Are the Symptoms?

The following classification of 11 symptoms helps doctors tell the difference between people who have lupus and people who have other connective tissue disorders:

Malar (MAY-lar) rash (a butterfly shaped rash over the cheeks and across the bridge of the nose)
Discoid rash (scaly, disk-shaped sores on the face, neck and/or chest)
Sensitivity to sunlight
Oral ulcers
Arthritis (pain, stiffness in joints)
Serositis (inflammation of the lining around the heart, lungs, and/or abdomen, causing pain and shortness of breath)
Kidney problems (protein leak)
Central nervous system problems
Blood problems (anemia)
Problems with the immune system (risk of infection)
Antinuclear antibodies (autoantibodies that react against the body's own cells)
Other symptoms include:

Anemia
Fatigue
Fever
Skin rash
Muscle aches
Nausea
Vomiting and diarrhea
Swollen glands Lack of appetite
Sensitivity to cold (Raynaud's phenomenon)
Weight loss
What Causes It?

The cause is unknown.

How Is It Diagnosed?

Lupus is sometimes difficult to diagnose because there is no single set of symptoms. A physical exam and a blood test can detect a group of antibodies found in the blood of almost all people with lupus. Some other lab tests include:

A compliment test (C3, C4, CH50, CH100) measures the amount of complementary proteins circulating in the blood.
A sedimentation rate (ESR) or C-reactive protein (CRP) may be used to measure inflammation levels.
A urine analysis issued to detect kidney problems.
Chest X-rays may be taken to detect lung damage.
An EKG can detect heart problems.
Treatment Options

Medications: aspirin and other anti-inflammatory drugs, NSAIDs, Antimalarial drugs, Corticosteroids, Immunosuppressants
Exercise
Diet/rest
Skin/sun protection
Who Is At Risk?

Lupus affects women about 8 to 10 times as often as men and often occurs around the ages of 18 to 45.
Lupus occurs more often in African Americans.
Lupus can occur in young children or in older people.
Studies suggest that certain people may inherit the tendency to get lupus. New cases of lupus are more common in families where one member already has the disease.

You know there are lots of jokes about arthritis but we really ought not to tease because some of the arthritis related diseases kill people everyday. Many go undiagnosed because in later years people just expect to get creaky and painful joints. It shouldn't have to be that way. We need to take these things seriously. If your doctor tends to just blow off your symptoms, find another doctor. Ask them to do tests. Find a doctor who will sit down and give you eye contact and really listen and ask questions.

A few years ago, my friend John Wells, a very very talented musician died of spinal cancer. He had been to his doctor who said that it was prolly just arthitis because John had moved heavy objects like pianos for years. The doctor suggested that he might try massage theraphy or a chiropractor. So John went to these other treatments. Hid wife finally after listening to him cry in pain demanded that he go to another doctor.

He went. He was diagnosed with spinal cancer. They said that it was very advanced and wanted to know why he had not come in sooner. He told them what the other doctor had said. He said that he believed that God would heal him. He said a lot of things because one doctor told him that it was simple arthritis. He was scheduled for chemotheraphy but he died before it could start. Diagnosis to death was about 3 weeks.
Pictures of leg lymphedema Lymphedema is the result of disruption in the lymphatic system, resulting in obstructed lymphatic flow, swelling, pain, and susceptibility to infection. Similar problems arise in the lower extremities due to surgeries in the legs or abdomen. Lymphedema is generally a lifelong disability that frequently worsens over time. There are no effective surgical or medical treatments for this condition. The mainstay of treatment is compressive therapy, usually by wraps and bandages or mechanical compression devices. However, these compressive treatments are expensive, confining, and difficult to use properly and consistently.

I currently use this pump unit. But it means that I am forced to stay in my bed almost all of the time.

Venous Insufficiency & Venous Stasis Ulcers.
Venous stasis, the cessation or impairment of venous flow, and the accompanying ulceration is a commonly occurring problem. Management of this condition presents a large problem to community nursing services and consumes considerable health resources.


Venous stasis ulceration occurs as an end result of sustained high pressure in the veins of lower extremities. Damage to either the deep or superficial veins then results. As the venous pressure rises and venous stasis occurs, capillaries are stretched and become more permeable. The protein leaks out of the vascular bed into the surrounding tissues. Fibrinogen is converted to fibrin and coats the capillaries, interfering with the exchange of oxygen and nutrients. Tissue breakdown begins and venous ulceration occurs.


Venous stasis leg ulcers are characteristically persistent and slow to heal - making a multifaceted treatment protocol necessary. TAFA

I am hoping to get Reid Sleeves so I can get out of bed more often and return to a more mobile lifestyle. Being in bed all the time really sucks! Sores and ulcers that never seem to really heal and usually stink are not my idea of what makes for a happy life. If I get the reid sleeves, I can go back out and smell the roses again. They even come in purple!

[Nya]

O.O boy you sure know how to explain something dont you?

Well thank you for explaining it to me. Now I will be able to better understand it more.

And I would never laugh about something like this. I never understood why someone would.

Boy I think it will take a while to read up on everything here but I think it would be worth it to fully understand what you are going through.

If I get the reid sleeves, I can go back out and smell the roses again. They even come in purple!

Purple huh? interesting it come in Pink to?

[hischild]

Yeah they come in all sorts of colors at the moment.

[Nya]

Cool

Im guessing Purple is your Favorite color

[hischild]

I have two purple wheelchairs and purple hair. LOL

[Nya]

ooh cool hehe Purple is a great color. its just a darker shading of Pink hehe.

except when it comes to bruises that is.


it took me and hour perhaps a bit more to clean my keyboard of my laptop. there was no reason the buttons would not work from time to time. the kitty hair and stuff in and under the keys baffled me as to why the keys worked at all. x.x

Ok new day so how is everyone?

[lostsoul]

New day its nearly bed for me lol. Yesh im fine thank you Nya ;D good day today got my web cam fixed which im happy about got a few more images done but nothing too big though

[Nya]

lol sorry Hamster I concider a new day when I wake up even though I tend to go to sleep and wake up in te same day.

Cool congrats on getting the Webcam fixed.

[hischild]

Yesterday was really kind of crazy for me so I am sorry that I didn't get to answer you Nya. The day was pretty hectic as on Weds I have the O2 delivery and the respiratory therapist and the aide and my bird Reuben always flips out on Weds.

He looks sweet in this pic but when Wed comes he gets crazy.

I keep swearing off graphics but then someone begs and I give in and several things yesterday didn't turn out well at all. Some of them looked great in my picture folder but then after uploading them, they looked awful.

My friend Paul wouldn't stay out of the control panel of the new template/skin that M@hud and I are building for him and making serious errors that I had to keep fixing. And he complained all the whole while about everything. . . .

I got several reports of TOS violations at exco and had to check them out and write some warnings -----which I really hate having to do. Most times people say "OK I will will remove the __________ (whatever caused the violation) but sometimes they get pretty nasty. And then unfortunately their board gets shut down before they can let their members know. And I get yelled at some more until Peter shuts them up.

And then I got to spend some time with my girl. I redid my entry for SOTW while she encouraged and critiqued it and I was well pleased when I fell asleep clutching my Bible, my chocolate, and my bottle of coke. I guess that proves where my priorities lie. LOL

I woke up early this morning and finished fixing some of Paul's errors while M@ redid his banner. So I am pleased about that too. Today I am planning on finishing some templates for Peter to use as presets and hopefully get a nap in because after being up only a few hours I find myself needing to go back to sleep. It sometimes seems like I am busier in my bed than I ever was when I was working full time with 3 foster kids and 3 pets. I would also like to go outside today as it is supposed to get up to almost 50 degrees. So I need to call someone to ask them to help me get dressed and get everything ready so that I can. I wonder what Patty is doing today. . . She'll take me out! *grin*

I hope that your day went well and that today. . when ever it begins turns out to be as M@ says "sooper".

[Nya]

Wow thats what I call a busy day. I hope you can go outside its a bit windy here.

And your bird is so cute hehe. Haha those Emotions are so funny to.

Aww sorry about the Exco problems should tell the guy to stay out of the codes. I hate when people do that truthfully. I go and help spend more then a few hours making them and they go and mess it up makes you want to pull your hair out. I had sworn to stop helping people but I end up helping any ways not sure why though.

But hope you all can work that all out.


Hmm well the say is not to bad really. Not started my rping sadly really need to get my heart back into it others are missing me in the rp's.

sooper huh interesting cant say I ever heard it put like that before but cute.

well hope you have a good day today God's Child.

[hischild]

Nya I think M@ is a throw back to the hippie days if the truth be told but then so am I in a way. I love those great gauzy skirts and poet blouses and wore "Earth Shoes" as long as I could find them. Now I wear Birks and have quite a few pairs as they seem to never wear out. (Well I wore Birks as long as I was able to wear real shoes but now I mostly wear my bearpaw slippers because of neuropathy in my feet.)

I laid down the law to my friend Paul. I think that he is something of a ditz but he is also excited at the prospect of having a board that works properly again. I went outside for about 35 minutes which was great because I got to see some of my doggy friends. My wheelchair has a squeak that the dogs hear and they start barking at me to come see them. Usually someone yells at them to quit barking (which never works) and when I get to where the dogs live, some of them do that happy whine squeak bark that says "I am so happy to see you." That racket is followed by children running outside with lots of hugs and sloppy kisses which totally make my day. Then I really needed that nap!

The smilie is from LivePencil www.livepencil.com/ and I love his work. I think that his are some of the very best on the internet. Check it out because he has lots of free stuff and adds more free stuff weekly.

I don't really understand rping but it is interesting that you brought it up because I just posted a request for a guy to tell me what all the terms that the rpers are using.

[Nya]

Ah I see I think I missed that era by a few years ^_^ But my parents lived through that time so I good family values out of such things. Ah I used to hate those shoes but then mom gave me some of hers and I have fallen in love with them. She loves them to. I was never fond of the Hard type but I have now learned they last longer with me.

Well thats good to hear that you did. I can understand him being happy but gotta draw the line somewhere between being happy and stupid happy.

Aww hehe I always liked when dogs do that even though hurts my ears. They are so cute when they jump around happy to see someone. Pets are so cute my dog is like that when I come back from going somewhere you would swear I had been away forever the way he acts.

Oooooh all those are so cute and your right they look great I will look further into it here in a few.


Oh well I cant claim to know all the terms but I have been doing it a while now. Guess if he cant answer you I could try.

[hischild]

Sometimes I think that Paul lives in the state of Stupid Happy rather than the state of Nevada! But my friend Bear a choc lab lives there too. So I think that it is a fairly common place to live.

It does amaze that people don't make back ups of their scripts. It is so easy do and can avert disaster many times. What takes them 5 seconds to screw up can take hours for me to try and straighten out. But I am asked to straighten out messes everyday. People make me admin at their boards and I never even post after I fix the problem and dontcha know that in just a few weeks they are back yelping for help. It kinda drives me insane. And they get so attached to things that aren't working right fir them and demand that I fix it. I don't know how to fix it so I say to dump it until they find or write a script that actually works. Some of them think that I am witholding info from them and call me mean or other names. One kid got mad at me because I wouldn't tell him how to rig the polls on his board. I don't know how and I really don't want to know how. But he wrecked his board and still blames me. Go figure . . . .

[Nya]

Haha yeah I have met a few peopl like him in the past.

Eh I hate that part. I was helping one guy who was expecting me to do all the work for him on his board. I dont mind helping but I cant spend HOURS looking for images to make stuff or look around every Coding site im a member of trying to find a code that he wants or a feature that he wants on his board.

Oh I cant stand the mean ones I normaly end up telling them to take a hike. because after about like 4 hours of being asked this and that and me telling them that you cant do that on PB they just dont get it.

I dont think I could work one of your boards just looking at it makes me all confused as to how you did it. Although from reading previous posts its all done the hard way.