Fizzykiss , 32

I want to thank those that replied yesterday and those that KN'd me for the support.

I've been doing alot of reading the last couple of weeks. Some of the stuff I have read scares me and some of it makes me feel better. However it does bother me that there is very little research being done. Also it amazes me how many people are pretty much clueless as to what it is or how it affects the body.

There are so many shows out there that make a big deal, especially during Oct, about breast cancer awareness and while I fully support that, October is also Lupus Awareness month and you never hear anything about it. This is something that people, women especially should want researched more and more considering little has been learned about it the last 40 years.

Lupus Statistics

Prevalence
[<3]1.5 million Americans suffer from Lupus that is 1 out of every 185 Americans.
[<3]Lupus is more prevalent than multiple sclerosis, cerebral palsy, muscular dystrophy, AIDS, cystic fibrosis, and sickle cell anemia COMBINED.
[<3]More than 16,000 Americans develop Lupus each year.
[<3]90% of those with lupus are women.
[<3]Lupus affects African Americans three times more commonly than Caucasians. Asians, Hispanics, and Native Americans are also more commonly affected.
[<3]80% of those with Lupus develop it between the ages of 15-45.
[<3]Discoid Lupus accounts for about 10% of Lupus cases.


Symptoms
[<3]About 10% of Lupus patients also have symptoms of some other connective tissue disorder.
[<3]40-60% of SLE patients have photosensitivity.
[<3]50% of SLE patients will have a neuro-psychiatric disorder such as seizures, headache, memory loss or depression.
[<3]65% of SLE patients will have skin involvement including malar rashes and discoid lesions.
[<3]Achy or swollen joints are found in 95% of patients.
[<3]Unexplained fevers are found in 90% of patients.
[<3]50% of SLE patients have kidney involvement.
[<3]27% have hair loss.
[<3]Mouth or nose ulcers have been found in 12% of SLE patients.
[<3]71% are anemic.
[<3]81% of SLE patients have prolonged and/or extreme fatigue.

Prognosis
[<3]Thousands of Americans die of Lupus each year.
[<3]Lupus deaths have actually increased by 61% in the last 25 years.
[<3]Lupus deaths among African-American women have actually increased by 70% in the last 25 years.
[<3]Only 50% of lupus patients lived 4 years after diagnosis in the 1950s. Currently 80-90% of Lupus patients survive 10 years or more after diagnosis.
[<3]About 15% of arthritis deaths are from SLE.
[<3]Almost 37% of SLE deaths are among people between 15 and 44.
[<3]Lupus deaths are five times higher for women than men.
[<3]Lupus deaths are three times higher for blacks than whites.

Research
[<3]No new treatment has been approved by the FDA for Lupus in over 40 years.
[<3]We still do not know what causes Lupus.

Other
[<3]About 5% of the children born to individuals with Lupus will develop the illness.
[<3]20% of people with Lupus will have a close relative (parent or sibling) who already has Lupus or may develop Lupus.
[<3]50% of Lupus patients see at least 3 doctors before being diagnosed.

these are from Cure4Lupus.org

Its official, I have Lupus. I'm upset, freaked out, but I'm also relieved. Now we can move on to making me better, getting me on a medicine that will help me instead of running all sorts of tests trying to figure it all out.

I've been doing alot of reading the last couple of weeks, and I've talked to a few people that lead perfectly normal lives. I need to stay positive and just take it one day at a time. The worst part is getting people to get past the fact that I don't look sick and move on to accepting that there is something wrong with me. The pain and exhaustion makes it hard for me to do things right now but hopefully once the medicine takes affect I will be able to function a little bit more.

For those that don't know check this site out to find out what lupus is and how it affects the body.

Well I don't know much. I have an antibody that's attacking my liver, but my liver test is normal so there isn't any damage done yet. I also have an antibody that's attacking my muscles. He had more blood drawn and sending it to UCLA to have them do tests on it. The blood tests I had done at the hospital showed a certain antibody and but the blood tests I had done at a private lab didn't show anything.

He did put me on Plaquenil to help with the pain and the tiredness.

Where do I start. I've been in and out of the er the last few weeks because I've been so unbelievably dizzy I can't function. Its so bad that I had days I couldn't even sit up without being so dizzy I'd get sick (literally). This last time I got Antivert to help with the dizziness, and for the most part is has been working.

I had MRI on my neck and CT scan on my head and neck. My lymph nodes on right side are swollen but everything else looks good.

I saw the rheumatologist 2 weeks ago. He ordered a bunch of tests and spent a while talking to me about lupus, medicines used to treat it and all that. At least he has some idea of whats wrong with me even though the thought of having lupus scares the shit out of me. I go back tomorrow for the results of the tests he ran.

Then on Wed I have ultrasound on my neck and thyroid (again). Then Friday I have an appointment with an ENT to see whats going on with the dizziness.

So thats whats going on with me.

The kids are doing good. They are going off track in about 3 weeks. I'm not looking forward to it but they are.

Oh and we are moving. The kids' last day of school is July 24th, so we are moving soon after that. The kids are even excited about this. It helps that we are moving to same town where a friend of mine lives so the kids already have friends up there.

I am so sick. I started running a fever Thursday evening. It breaks after I take some tylenol/ibuprofen, but then comes back a couple hours later. I feel like I've been run over a few times.

I have a doctor appointment on Tuesday so I was hoping I could hold off until then. I don't really want to make a trip to the ER. I don't want to put my kids through that right now.

The kids are doing good. They went back to school on Friday. I'm still not exactly sure why it was a Friday though. I think it will do them some good to get back to the normal everyday routine. I talked to their teachers about what happened, and Robbie's teacher called so he could talk to the guidance councelor. He gave Robbie a little notebook and told him to write down his feelings. He also told him that if he ever needs to talk that he can go see him any time. I might hate the principal of this school, but the rest of the staff is really great. Especially when it comes to dealing with special circumstances, like with the kids' father, Patrick.

D's doing good. He really needed to go back to work he was starting to drive me insane.

I need to start feeling better, my house is driving me nuts. I need to get things unpacked, and organized again and I haven't been able to do it.