PDA

View Full Version : New To the Group - SLE



AChronic
05-12-2009, 02:46 AM
Hi, I've been feeling the need for support and sharing lately and went on the hunt for some place... I was pleased to find We Have Lupus.

I was diagnosed with systemic lupus in 1986 right before I turned 16 after having health problems for many years.

I've been on prednisone and plaquenil the entire 23 years along with all sorts of other drugs over time.

So I'd just like to say hello and I'm looking forward to getting to know everyone.

Angel Oliver
05-12-2009, 05:15 AM
Im laughing at you cause you edited cause the 'crazy smiley jumped in'...bet you got this one :).We all do it too!!
Welcome to this site.You will find all te support you need right here.We will all try and help,support,make you giggle.Ask anything! Hope today is a good day for you.Glad you found us.
love
Angel.xxxxxxxx

mountaindreamer
05-12-2009, 06:50 AM
hi achronic,

welcome to our group....i can tell that you are going to fit right in.....we address serious situations/symptoms, but we also have a few laughs along the way. An occassional giggle helps all us feel better.

so sorry that you have been dealing with this thing for so long, and starting at such a young age, but i am very glad that you found us....come and sharewith us, we are a great family.

we have other members from Portland, so you have friends not too far away.

gina
05-12-2009, 09:46 AM
You will find support and answers to your questions on this site.
We are here for you. anything you need.:laugh:

Rastagirl
05-12-2009, 10:28 AM
Hello Achronic.... :wavey:

Just stopped by to welcome you! Glad you found us. I'm the other member from Portland that Mountaindreamer mentioned. What a great surprise! I read thru your post and didn't even see the 'Portland'....then read Mountaindreamer's comment....scrolled back up and sure enough, was delighted to see you're from Portland. There are a few others from around Oregon..Bend, Grants Pass, Klamath Falls....but I haven't connected with anyone from my neighborhood.

I'm Lori and our stories sound a bit similar. I was diagnosed in '82, at age 18...so it's been 27 years for me. All 27 I've spent on Prednisone and quite a few years on Imuran also. I've been blessed to be in remission for about 15 years and counting and I've been tapering very slowly off the cortisone. I'm finally, unbelievably, taking only 1 mg. per day, and hoping when I see my Immunologist in June, I'll finally be able to get off it completely. I never thought the day would come.

You've found a great place to find understanding, support, and lots of helpful information. There's a wealth of knowledge here and a very compassionate group of members. Again, I'm glad you joined us and look forward to getting to know you better.

Fondly,

:cool2: Lori

AChronic
05-12-2009, 02:14 PM
LOL... that was the exact smiley I got, it cracked me up. I was smiling but I wasn't rolling around! haha.

Thanks for the welcome!

AChronic
05-12-2009, 02:17 PM
Thanks for the welcome.

I have to say that for me, a sense of humor is a must. It's helped me over the years to cope. I'm glad it's something I've been able to hold on to.




hi achronic,

welcome to our group....i can tell that you are going to fit right in.....we address serious situations/symptoms, but we also have a few laughs along the way. An occassional giggle helps all us feel better.

so sorry that you have been dealing with this thing for so long, and starting at such a young age, but i am very glad that you found us....come and sharewith us, we are a great family.

we have other members from Portland, so you have friends not too far away.

AChronic
05-12-2009, 02:21 PM
Thanks for the warm welcome!

I've had a rough time finding an active lupus support forum. This one looked like it was hopping! And just struck me as warm and welcoming. Looking forward to participating.


You will find support and answers to your questions on this site.
We are here for you. anything you need.:laugh:

AChronic
05-12-2009, 02:33 PM
Nice to meet you Lori.. My name is Andrea and I live in North Portland in the St John's area.

Congratulations on your remission and on your low dose of prednisone! That's amazing. I can really relate to how difficult it is to get to such a low dose and be able to maintain it. That would be so great if in June you'd be able to go off it completely. I'll keep my fingers crossed for you! The lowest I've been on is 2.5mg and that was more than 10 years ago during my college years and the only long term remission I've had. Right now I am on 4mg and I'm so excited about that. My lupus has been very active for the past 7 years or so and I am now on ss disability because of it. But being able to cut back to 4 after so long feels like a great accomplishment somehow.

I have also been on Imuran in the past. Also methotrexate, cytoxan and at the moment cant remember what else! lol my memory stinks these days.

I see a rheumatologist out of Adventist medical center after going through a few. He is a perfect match and one of the best doctors I've ever had.

Good to meet you. I look forward to getting to know you also and everyone, seems like a great place!



Hello Achronic.... :wavey:

Just stopped by to welcome you! Glad you found us. I'm the other member from Portland that Mountaindreamer mentioned. What a great surprise! I read thru your post and didn't even see the 'Portland'....then read Mountaindreamer's comment....scrolled back up and sure enough, was delighted to see you're from Portland. There are a few others from around Oregon..Bend, Grants Pass, Klamath Falls....but I haven't connected with anyone from my neighborhood.

I'm Lori and our stories sound a bit similar. I was diagnosed in '82, at age 18...so it's been 27 years for me. All 27 I've spent on Prednisone and quite a few years on Imuran also. I've been blessed to be in remission for about 15 years and counting and I've been tapering very slowly off the cortisone. I'm finally, unbelievably, taking only 1 mg. per day, and hoping when I see my Immunologist in June, I'll finally be able to get off it completely. I never thought the day would come.

You've found a great place to find understanding, support, and lots of helpful information. There's a wealth of knowledge here and a very compassionate group of members. Again, I'm glad you joined us and look forward to getting to know you better.

Fondly,

:cool2: Lori

Pearl
05-12-2009, 03:40 PM
on the welcome. This is a great place to find support. As you will see, the sense of humor fits right in. Helps many of us make it through the day.

Glad you found us.

Jana

wrightrs
05-12-2009, 09:19 PM
Just want to welcome you. The smiley is one of my favorite things here.

Rastagirl
05-12-2009, 10:05 PM
Nice to meet you Lori.. My name is Andrea and I live in North Portland in the St John's area.

Congratulations on your remission and on your low dose of prednisone! That's amazing. I can really relate to how difficult it is to get to such a low dose and be able to maintain it. That would be so great if in June you'd be able to go off it completely. I'll keep my fingers crossed for you! The lowest I've been on is 2.5mg and that was more than 10 years ago during my college years and the only long term remission I've had. Right now I am on 4mg and I'm so excited about that. My lupus has been very active for the past 7 years or so and I am now on ss disability because of it. But being able to cut back to 4 after so long feels like a great accomplishment somehow.

I have also been on Imuran in the past. Also methotrexate, cytoxan and at the moment cant remember what else! lol my memory stinks these days.

I see a rheumatologist out of Adventist medical center after going through a few. He is a perfect match and one of the best doctors I've ever had.

Good to meet you. I look forward to getting to know you also and everyone, seems like a great place!

Hi Andrea...good to meet you.

I live in West Linn. Seems strange I've been on this forum for awhile and now finally meet someone right across town from me.

I've been getting all my healthcare at OHSU for years...pill hill. I've been going there for 27 years now...know my way around it like the back of my hand. I even worked there for 6 years. I have an outstanding Immunologist that has been my doc since my diagnosis and he's always referred me to only the best on the hill...I've been very fortunate in that respect.

I'm glad to hear you've got a doctor that you like and trust. That makes a huge difference in your health care and many times, the course of your illness.

I'm on Social Security Disability too. Have been for about 13 years now, since my last pregnancy.

Glad to have a fellow Portlander on here. Are you a native? Born and bred? I am. All my family is still here, except my younger brother lives in Riverside, California.

Catch up with u later....

:cool2: Lori

froggal
05-13-2009, 01:52 AM
Welcome to our Lupie family!! You will find everything you need here and more!! We are very sincere in helping and caring about one another. I hope you find what you are looking for! Always a friend ~ Angie

KathyW1958
05-13-2009, 03:37 AM
Hi Andrea,
Welcome to the site. My name is Kathy. I have SLE too and have had it since around the age of 5 years old. I am now 50. I did not get diagnosed until many years later. I just want to welcome you to the site. There are wonderful folks that come in here. They have great advice. Please keep posting.

Hugs,
Kathy

Saysusie
05-13-2009, 08:59 AM
Hi Andrea;
I must apologize for not welcoming you sooner. Somehow I missed your post. I see that many members have made you welcome and have provided you with support. You will find that this is a great group and we are very much a family here. I just wanted to make sure that I added my "welcome" to those you've already received and to let you know that we are here to help you as much as we can and for as long as you need!

Peace and Blessings
Namaste
Saysusie

AChronic
05-14-2009, 02:00 AM
Glad to have found you all too. Thanks for the welcome.


on the welcome. This is a great place to find support. As you will see, the sense of humor fits right in. Helps many of us make it through the day.

Glad you found us.

Jana

AChronic
05-14-2009, 02:02 AM
No apologies necessary, I've received a very nice welcome from everyone. Thank you so much, right now I'm reading through, so much helpful info.




Hi Andrea;
I must apologize for not welcoming you sooner. Somehow I missed your post. I see that many members have made you welcome and have provided you with support. You will find that this is a great group and we are very much a family here. I just wanted to make sure that I added my "welcome" to those you've already received and to let you know that we are here to help you as much as we can and for as long as you need!

Peace and Blessings
Namaste
Saysusie

MicRoMediC
05-14-2009, 03:24 PM
welcome and plenty of support here!