Just saying hello

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goldenwings
Regular Member


Date Joined Apr 2007
Total Posts : 81
   Posted 4/19/2007 5:37 AM (GMT -7)   
Hello,
 
I don't know whether there is a more suitable place to put this, but I would just like to introduce myself as a new member of the forum.
 
I have had SLE for 30+ years and hope I can be of help here.
 
Take care
 
goldenwings
 
 

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 4/19/2007 8:14 AM (GMT -7)   
Hi goldenwings and welcome. I'm sorry that you have had lupus for so long and I'm sure that with your experiences you will be able to help others here. We have a great group of supportive people here. I'm glad you joined us and I look forward to hearing more from you.

Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

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Co-Moderator: Lupus and CFS Forums



PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 4/19/2007 8:39 AM (GMT -7)   
Hi Goldenwings and welcome to the forum. We're glad you're here and would love to know more about you. We can always benefit from those who have had years of experience and hope that you'll also find something here that will help you. If you've read some of the other posts here, you'll see that not only do we discuss our medical problems but we also support each other during difficult times. It's a wonderful place. Look forward to hearing more from you.
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, cymbalta, tramadol, lunesta, actonel, meridia, tricor, aciphex, multivitamin, calcium w vit D, fish oil, aspirin


goldenwings
Regular Member


Date Joined Apr 2007
Total Posts : 81
   Posted 4/19/2007 9:59 AM (GMT -7)   

Thank you hippimon and patti for your welcoming words.  I do hope that I might be able to people here.   yeah

I think one of the most important things with any chronic illness is emotional support.  From reading the posts here, I see that this is here in abundance.  It makes such a difference knowing that such support is there if and when we need it.

Take care

goldenwings :-)


dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 4/19/2007 11:27 AM (GMT -7)   
Hi goldenwings... welcome to the forum. :-)
"Des"
Co-Moderator ~ IBS Forum
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Naproxen 1000mg, Xanax XR 2mg, Miralax 17g, Supplements


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goldenwings
Regular Member


Date Joined Apr 2007
Total Posts : 81
   Posted 4/19/2007 12:11 PM (GMT -7)   

Thank you dbab.

Take care

goldenwings  :-)


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 4/19/2007 3:25 PM (GMT -7)   
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
hugs
carol
God Bless
Carol
 
 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!
 
 


goldenwings
Regular Member


Date Joined Apr 2007
Total Posts : 81
   Posted 4/19/2007 3:49 PM (GMT -7)   

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  :-)


CaptSue
Regular Member


Date Joined Jan 2007
Total Posts : 279
   Posted 4/19/2007 3:56 PM (GMT -7)   
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,
Sue
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)


omega
Veteran Member


Date Joined Jan 2007
Total Posts : 607
   Posted 4/19/2007 4:01 PM (GMT -7)   
Hi Goldenwings
Wow!!!! You have 30years + lupus already? You must know a lot. So glad that you are joining the forum. Welcome!!!

jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 4/19/2007 4:05 PM (GMT -7)   
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 :-)
Stacie

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)


emmi
Veteran Member


Date Joined Apr 2005
Total Posts : 1529
   Posted 4/19/2007 7:42 PM (GMT -7)   
Hi Goldenwings,

Would love to hear your story! Welcome aboard.

xoxo emmie
</FONT>

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


bhkhhh
Regular Member


Date Joined Jul 2006
Total Posts : 245
   Posted 4/19/2007 8:42 PM (GMT -7)   
Hello Goldenwings. Wow 30yrs! You've helped me already! I am new to lupus & still have lots of questions & concerns.

goldenwings
Regular Member


Date Joined Apr 2007
Total Posts : 81
   Posted 4/21/2007 4:58 AM (GMT -7)   

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


sandspoker
Regular Member


Date Joined Apr 2007
Total Posts : 104
   Posted 4/21/2007 6:21 AM (GMT -7)   
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!!  

goldenwings
Regular Member


Date Joined Apr 2007
Total Posts : 81
   Posted 4/21/2007 4:27 PM (GMT -7)   
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

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 4/21/2007 4:34 PM (GMT -7)   
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,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, MDS (Blood Cancer). Mediport and tons of meds.


goldenwings
Regular Member


Date Joined Apr 2007
Total Posts : 81
   Posted 4/21/2007 5:08 PM (GMT -7)   
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 :-)

mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 4/21/2007 5:40 PM (GMT -7)   
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.
                                                                  Babs
 Co-Mod: Lupus Forum
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
Meds:Arava,plavix,aspirin,protonix,gabitril,zanaflex,xanax,
mirapex,advair,foxamax,donnatal,folic acid.
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


goldenwings
Regular Member


Date Joined Apr 2007
Total Posts : 81
   Posted 4/22/2007 4:49 AM (GMT -7)   

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

goldenwings


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


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 4/22/2007 12:29 PM (GMT -7)   
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.
                                                                 Babs
 Co-Mod: Lupus Forum
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
Meds:Arava,plavix,aspirin,protonix,gabitril,zanaflex,xanax,
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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