New member confused and have lots of questions

[Guest guest]

Hi everyone! I just wanted to tell you thanks for the warm welcome

to the group. My name is Carol and I am 42 married and have 4

children a dog and a cat. I love art and sculpt dolls from polymer

clay as well as lots of other things.

I have been having a hard time with the whole idea of having lupus

which I guess is not so unusual but it feels really hard at times.

I kind of found out I had Lupus quite by accident. Now that I have

been diagnosed with it I realize I had symptoms for a while but

never really recognized it.

I grew up in a family where we didn't really go to the doctor much

and if you got sick you just kind of dealt with it on your own until

you felt better. We rarely if ever took medications for anything.

I went to the Doctor in December because I was having pain in my

neck and head that made it hard for me to function because of the

stiffness. After 2 trips for the same problem I was x-rayed and

told I had arthritis in the area. I didn't think much of it but I

hadn't been in for a physical for a couple of years so my doctor

recommended I come in for one and ordered the regular blood work

done. Before the physical she found my liver inflamed and checked

for Hepatitis B and some other things. The tests came back negative

so when I came in for a physical she ordered a Lupus panel done.

About a week later she called me on the phone and said the test

results showed I had lupus but not too worry. She told me she was

referring me to a rheumatologist and gave me the number. I called

and they said they couldn't get me in until the following August.

This past month I went in to see my Primary Care again telling her I

was having pain in my feet and muscle fatigue, tiredness and a

really fuzzy brained feeling. She said she wanted to start me on 2

different meds. Plaquenil and Choline. I have read about these

drugs and the side effects are scary. I am having a hard time with

wondering if I really have lupus and I have so many questions. If I

take these drugs are they going to help or just make me worse. Is

there more natural ways to go? I hear all these stories of people

who take these natural drugs and are healed. If this is so why

don't more people use them. I'm sorry I am so long winded. Is

this normal to feel this way. I always felt so good about the fact

I didn't have many health problems. Now I find myself crying over

how to deal with this all and how to help my family understand it.

Thanks for any help you can give!

[Guest guest]

Carol W., Hello and welcome. First, you are not crazy, you are ill. Get that set in your mind, and

INSIST on being seen sooner by the Rheumatologist. Get your Primary Doc. to call and make the

appointment since your condition is worsening so fast.

About the meds: I don't know much about Choline, but I have taken Plaquenil for a long time without

any adverse side effects. I take 400 mg. per day. It has helped me a lot, but it does take a long

time to kick in, as long as six months. It is slow acting, but very effective for many of us in slowing

the disease down.

Someone else in the group may know more about Choline. Have you tried looking it up on line in any

of the medical dictionaries or pharmacy sites available there? Lots of information right at your finger tips.

I live in No. California, where do you hail from? Glad to have you with us, although I wish it were for

a happier reason. Hugs, MM aka: Mike, one of the moderators

[Guest guest]

> Carol W., Hello and welcome. First, you are not crazy, you are

ill. Get

> that set in your mind, and

> INSIST on being seen sooner by the Rheumatologist. Get your

Primary Doc. to

> call and make the

> appointment since your condition is worsening so fast.

>

>Hi MM

Thanks for the help. I did talk to my doctor about getting in

sooner. She said she would call the rheumatologist but they would

still probably take another month or so. She said she would treat me

until they could get me in. I guess the Choline is in the same

category as some of the drugs like ibuprofen etc. I have had a lot

of trouble in the past with my stomach and ibuprofen causing a lot

of pain so I have hesitated to take it but I did take it today and

made sure I ate some bready type food before I took it. I have had

ulcers several times in the past.

I guess it will just take some time to get all this stuff down.

Thanks for making me feel so welcome. It's nice to be with a group

of people who make you feel so welcome.

Oh and I am living in Southern California the great Inland Empire.

I am from SLC, Utah and have only lived here 4 years now. The

weather has been great since I always had such a hard time with my

fingers and toes in the cold. Take care! Carol