Posted 4/19/2007 2:11 PM (GMT -6)

Thank you dbab.

Take care

goldenwings  :-)

Posted 4/19/2007 5:25 PM (GMT -6)
Hi Goldenwings, welcome to the forum. Oh yeah there are a lot of patience informative people around here. They put up with me. and that is saying alot. I am looking forward to getting to know you better.

take care
God Bless
 Newly DX's Lupus.Possible CREST,COPD, high PB xanax,triam , Opana ER for pain, Evista for osteo,. oxygen Plaquanil400mil, . effexor. spiriva, xopenex.
Come ye, all that are weary and heavy laden, and I will give you rest!

Posted 4/19/2007 5:49 PM (GMT -6)

Hiya okie,

Good to meet you. I look forward to getting to know you too. I honestly feel that I have a lot to offer from a personal viewpoint of SLE, and I hope to be of help in any way I can be.

Take care

goldenwings  :-)

Posted 4/19/2007 5:56 PM (GMT -6)
Hi Goldenwings,

Welcome, welcome. Glad you are going to join us and bring your view point. It is so nice to find folks who understand and after 30+ years, wow!, you must know alot.

I hope to hear more about your journey.

Stay Strong,
Diagnosis: Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena (both diagnosed in 2006)

Meds: prednisone (5.0 mg wish I could taper), Imuran (2X50mg), Prilosec (20mg), Prozac (off now)

Posted 4/19/2007 6:01 PM (GMT -6)
Hi Goldenwings
Wow!!!! You have 30years + lupus already? You must know a lot. So glad that you are joining the forum. Welcome!!!
Posted 4/19/2007 6:05 PM (GMT -6)
Hi Goldenwings, welcome! It sounds like you have a lot to offer since you've had lupus for so long. I look forward to getting to know you :-)

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's 1999, Celiac Disease (gluten sensitivity)2003, Raynaud's 2004, Lupus 2005 and Sjogrens 2006
Meds:Imuran, Plaquenil, Flexeril, Sulindac, Levoxyl, Folic Acid and magic mouthwash (as needed)

Posted 4/19/2007 9:42 PM (GMT -6)
Hi Goldenwings,

Would love to hear your story! Welcome aboard.

xoxo emmie

SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy

Posted 4/19/2007 10:42 PM (GMT -6)
Hello Goldenwings. Wow 30yrs! You've helped me already! I am new to lupus & still have lots of questions & concerns.
Posted 4/21/2007 6:58 AM (GMT -6)

Hello everyone,

Thanks for the welcoming words.  I will try my best to be of any help that I can to you.  Only from a personal viewpoint of course, never a medical one. What I speak about are only things that have happened to me, or medications that I have experience of personally, tests I have had. etc.  Any information that I can offer regarding things I know about in other words.  I do a lot of research into lupus and other medical conditions so I hope I can help.  I really do have to cover myself though with regard to these things.

I must say though that anything that is really worrying you must be discussed with your doctors. 

(I know you all know this, but I need to make sure that I don't get into trouble with anyone because of anything I have said). 

Take care


goldenwings  yeah

Posted 4/21/2007 8:21 AM (GMT -6)
scool  Morning everyone and A special Hello to you Goldenwings - My sister too was diagnosed 30 years ago - I'm 10 years younger than her but somehow I remember that she had a heck of a time getting diagnosed as Lupus was relatively unknown then - is this the case?  I'm new here too and new to Lupus (although I know in my heart that I've had it for quite some time now).  I'm going to start a new post this morning so any info all of you can share would be great!!  
Posted 4/21/2007 6:27 PM (GMT -6)
Hello sandspoker,
Another newbie - unfortunate that lupus has brought you and indeed all of us together, but good I think because the more of us who speak and share about lupus and our experiences and tell our stories, the more enlightned we will all become.
Yes indeed as you say more than 30 years ago, lupus was "known" but not an illness that had a lot known about it and treatments were so backward then - if that is a word I can use.  Thing is though, my diagnosis came in about 4 days of being admitted to hospital so I was lucky in that I had a wonderful team of rheumatologists looking after me then.
I obviously hope you haven't got lupus of any type, but if you have you are in such a good place to learn and to share.  Never forget to ask and ask questions about any and all aspects of your treatment of anyone who will listen, and never go away until you have an answer.  Works for me every time.  Mind you I am and always have been very persistent and a bit of a pain when it comes to wanting to know things.
Take care
goldenwings  yeah
Posted 4/21/2007 6:34 PM (GMT -6)
Hi Goldenwings:

Just a quick hello and welcome to the forum. I've had lupus for 18 yrs and it's been rough, I can't imagine having it for 30 yrs. You've had lots of faith and endurance to get through the years.

Just wanted to say welcome.

Take care,
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, MDS (Blood Cancer). Mediport and tons of meds.

Posted 4/21/2007 7:08 PM (GMT -6)
Hello Barbara,
Thank you so much for your welcome.  Another "old timer" of lupus.  Whilst I am so sorry to meet you because of this, it is good to know that with our longer experience of lupus, we can offer help and support to "newbies" and others who have questions and need our understanding.
Take care
goldenwings :-)
Posted 4/21/2007 7:40 PM (GMT -6)
Hi Goldenwings,
    Welcome to the forum. I'm another 30 year lupus sufferer. Hope to get to know you better and hear your experiences as well. As you see, this is a great group of people that are very supportive and caring. Take care.
 Co-Mod: Lupus Forum
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
mirapex,advair,foxamax,donnatal,folic acid.
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

Posted 4/22/2007 6:49 AM (GMT -6)

Hi there Babs,

Hello to you too.  I think we can offer a lot because as you know even today there is so much misinformation about lupus out there.  We are still here and living proof that there is life with lupus and we have fought and still fight to stay around.  Unfortunately some people are told or read that there is a time limit on the survival rates with lupus.  I have organ involvement and have problems from time to time because of this.  I want others to know it can be something that can be managed with the right care and understanding from doctors, and support from our families and friends too. 

I have other medical problems/disabilities going on too, but we are proof that we can "cope" - not meant in a light way - with a chronic illness given the right tools to do so and having the mind set that enables us to be a person with lupus, and not letting lupus be who we are.  This is what I personally believe anyway.

Speak to you again soon.

Take care


Post Edited (goldenwings) : 4/22/2007 5:52:42 AM (GMT-6)

Posted 4/22/2007 2:29 PM (GMT -6)
Hi Goldenwings,
    Glad to hear back from you. I think that most(unfortunately not all) people with lupus, with a good treatment plan and a great support system from friends and family may struggle at times but can learn to cope and will do well overall.
    Most everyone here knows me from my stories of crossing the bridges that lupus puts in my path. I have faced some long bridges in my 30 years but, I always manage to reach the other side with a strong faith in God, great medical treatment and a wonderful support system.
   Lupus has attacked my equallibirum, lungs, heart and CNS. I also had a mild stroke. This disease can knock me on my rear at times and can bring my spirit down a notch or two but, I always manage to dig deep for that inner strength and my "flight or fight" system kicks in to bring me back.
   For me, I have learned to take it one day at a time. Cross one bridge at a time. I try to keep a positive attitude, pace myself, avoid the sun and try to limit the stress factors. This isn't always easy to do of course, as you know. Lupus is a constant struggle for us all and can cause a major battle with the mind and body. We can get very depressed a times and feel like we are loosing the battle but, in my case so far, I always come out on top. Sometimes it seems like there's no end in sight to the longer bridges I've face but, I do manage to inch my way to the other side eventually.
   I have to say, that I have been truely blessed by this site and the wonderful support I have found here. This is an amazing group of people! They have helped me cross some major bridges in the last 2 1/2 years and I have made some wonderful friends along the way!
   I'm sure you will be a great asset to us all. Hopefully, we can help give you the support you need as well. I would love to hear your stories soon if you don't mind sharing with us. Please take care and I look forward to getting to know you better. You will be in my thoughts and prayers.
 Co-Mod: Lupus Forum
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
mirapex,advair,foxamax,donnatal,folic acid.
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

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