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View Full Version : hello everyone i am new here my name is Tammy



Tammy2011
07-29-2011, 11:11 PM
i have been recently diagnosed with subacute cutaneous lupus with a negative lupus band test im not to sure what that all means but i look forward to talking to all of you and to anyone who has the same type as me for support . i am 42 years old

Linda From Australia
07-29-2011, 11:41 PM
Hello Tammy and welcome to this forum. I do hope that your journey to recovery is quick for you.

lovedbyHim
07-30-2011, 12:44 AM
Hi Tammy ! Guess what? My name is Tammy. Do you you know what our name means? It means, "Seeker of truth." I know you will find that here as this is a great family. Welcome!

steve.b
07-30-2011, 01:44 AM
hi tammy, and welcome.

gkf109
07-30-2011, 06:33 AM
Hello Tammy, Welcome, you found a great site with alot of great people!

rob
07-30-2011, 09:28 AM
Hello Tammy! Welcome to our group. Please make yourself at home.

Rob

Elo
07-30-2011, 10:13 AM
Hi Tammy!
I haven't been diagnosed with anything other than a vague AI disease, so i'm sorry but I have no idea what that means either! Hehe.
Welcome to the forum :) It's wonderful to have you here - feel free to look around and comment on some threads or even start a new one with a topic of your choice. being able to talk to and hear from people who have lived with the disease for so long can really help, especially if you feel like people in your "real life" don't understand you, or you're scared about longevity with the disease.
Welcome again!

Tammy2011
07-30-2011, 12:57 PM
thanks everyone i appreciate the warm welcome .i found out 4 weeks ago that i have this type of lupus im a little confused on some of the things i read on lupus sites so i am so happy i found this one with real people who have this real disease .i have a follow up appointment on Wednesday for my other blood test results so i have a list of questions for the Dr when i see him lol i cried for a week staright when i found out that i had subacute cutaneous lupus and i was wondering if anyone on here has this type and is it a milder form of lupus and does it pretty much stay on the skin and doesnt usally progress to the organs? i do have the muscle and joint pain but the plaquenil helps with that i have been on plaquenil for 4 weeks now i take 200 mg twice a day.

mdawncooper
07-30-2011, 01:18 PM
Welcome Tammy: I am at the beginning stages of the Lupus journey myself. I look forward to talking with you often.

Melanie

Tammy2011
07-30-2011, 01:55 PM
Welcome Tammy: I am at the beginning stages of the Lupus journey myself. I look forward to talking with you often.

Melanie


do you have the same type as me? i have subacute cutaneous lupus i am not sure but i think it affects just the skin ?

gkf109
07-30-2011, 01:55 PM
Hi Tammy, lupus is a very hard disease to diagnose some people go years before they are ever diagnosed. also lupus affects everyone differently, but most do have fatigue and joint pain, I am pretty sure I was born with it and I still have not got a diagnosis yet, I got a rash a couple years ago that would not go away, a biopsy was done and I was told it was tumid lupus and that it would only affect my skin, I did not even know what lupus was, but as I started to research yhe symptoms that was me, I never thought that all these things I had been feeling all my life were connected to one thing, I have had 4 ana tests and all have come back neg, but I found out that lupus plays havoc with your blood and will cause false negatives. there are over 60 auto immune disease's and they all cause similar symptoms. also ever since my rash showed up my symptoms have gotten much worse, more frequent and lasting longer. good luck and I hope all is well! -Gary

Saysusie
07-31-2011, 11:13 PM
Sub Acute Cutaneous lupus is a type of lupus that involves the skin. Yes, it can be a precursor to Systemic Lupus Eurythematosis. It does not always happen, but it is possible.

There are three types of cutaneous lupus erythematosus: acute lupus erythematosus; subacute lupus erythematosus, and chronic lupus erythematosus (often called discoid lupus).

The subacute type of cutaneous lupus causes dry, ring-shaped, lesions on the skin. These lesions can occur anywhere on the body, but is mostly on the chest and upper back. Subacute cutaneous lupus is a type of Lupus that is somewhere between discoid lupus and systemic lupus. Approximately 10% of Lupus patients suffer from Subacute cutaneous Lupus.

This type of Lupus is a milder form of the disease, it can develop into the more serious form of the disease. It is important that you start to take good care of yourself now: eat a healthy diet, take vitamins, do not drink or smoke, stay out of the sun as much as possible and see your dermatologist & rheumatologist regularly, take your medications as prescribed and try to avoid stress as much as you can.

I am glad that you found us and that you decided to join our family. Please know that we are here to help you as much as, and in any way that, we can!

Peace and Blessings
Namaste
Saysusie

Tammy2011
08-01-2011, 06:40 AM
thanks for all of the good information everyone i love this site :)

nicolehinkel
08-01-2011, 08:20 AM
Hi Tammy,
Based on my primary care physician I have SLE. It has taken me 20 years of suffering symptoms and numerous surgeries and tests to finally get an answer. Not an answer I like but proof that all my pains are in my head. The hardest thing the last 20 years was being told I was a hypochondriac. I knew something was wrong but no one would listen, now I don't have many answers because I haven't seen the specialist but based on my symptoms and what I have read I am scared to death.

Tammy2011
08-01-2011, 11:29 AM
welcome nicole i know it can be very scary and the internet doesnt help either i googled like crazy then i said forget it i was so busy worrying about dying that i wasnt letting myself live .that is when i found this site and i am so thankful that i did because here you get to talk to real people with real symptoms and no one judges you here ..i hear ya on the hypochondriac feeling i felt i was complaining everyday about some thing lol

tgal
08-01-2011, 01:18 PM
Hi Tammy,
Based on my primary care physician I have SLE. It has taken me 20 years of suffering symptoms and numerous surgeries and tests to finally get an answer. Not an answer I like but proof that all my pains are in my head. The hardest thing the last 20 years was being told I was a hypochondriac. I knew something was wrong but no one would listen, now I don't have many answers because I haven't seen the specialist but based on my symptoms and what I have read I am scared to death.

I think many of us go through the relief of having a name for what is wrong. So often we get to a place where we want to stick our tongue out at all the people that thought we were faking it all these years and tell them "up yours". lol It is not about being happy we are ill it is just a relief knowing that we were not crazy!

You need to know that with all the meds now Lupus does not have to be a death sentence. There are people here that have lived with it for decades. It is all about taking the meds and understanding that there are not any quick fixes and you will have to make some chances to your life. If you do those things you can get to a place where you will feel better then you have in quite awhile.

Once again, welcome to our WHL family. We are really glad to have you with us

nicolehinkel
08-01-2011, 03:46 PM
I totally understand the feeling of feeling like you were complaining everyday because I totally felt that way and still do. Everyday it's something new. Some part of me hurts in some way. I just went through a spell of having a headache for 16 days straight.