View Full Version : New...wanting to share stories, get advice.
05-30-2009, 04:10 PM
I am not too sure what to say in this intro, but I'll start with hello.
I am living in Colorado right now and I love it out here. I really feel like being in an environment where people are active and being around nature has helped me feel a little better about things.
I have been living with lupus for about 6 years now. I spent the first couple of years jumping from doctor to doctor while they struggled to find a cause for my symptoms. Finally they figured out that I had lupus and I, like you, have been dealing with the symptoms ever since.
I joined this site because I thought it would be nice to connect with people. Maybe you can tell me things you have done that have helped your symptoms and life in general and maybe I can do the same.
Not totally sure what I expect right now...but thought I'd give it a go.
Nice to meet you,
05-30-2009, 04:33 PM
Hello and welcome to you.Yes its a very good idea and im glad you choose WHL as the members here are so very caring and lovely and understand about living with Lupus. I will catch up with you very soon as i want others to tell you there story as im in limbo....been sick since 2004.....bouncing from one dianosis to another and hope one day to know what is the matter with me.
Where you live sounds fab....nature...oh good medicine for the mind.
You settle in here and just watch the replies and support you get from all the members here.
Also,we have our own arcade (which im rubbish at as i have a laptop and no mouse......dont think ive told anyone that :) ) Ok so i have about 100 times lol.Sounds like a fab excuse to me.Also if you click on community then social groups we hide out in there having fun and venting and telling jokes too...so have a peep.
Hope today was a good day for you.Im off to bed soon....in the UK....so you take care.
Lots of love
05-30-2009, 04:48 PM
welcome, welcome....we are thrilled to add you to our world-wide family. This is truly a family to many of us, because we can talk about anything, ask any question, and vent as much as we need to....all of this without being judged, and everyone truly understands.
please make yourself at home, join in the threads, or start a thread by asking any questions....i hope you find the same comfort here that i have found as a member of WHL.
05-30-2009, 10:22 PM
Just wanted to say Hello :wavey: and welcome you....
I'm glad you decided to join us. You've definitely found a great place with understanding, compassionate people who completely understand what you're going through.
There always seems to be someone to help answer your questions or let you know you are not alone.
As Angel said, feel free to jump in with both feet. We love the company.
Again, welcome....make yourself at home.
05-30-2009, 10:36 PM
What helped my symptoms...hummm..I've learned to live with Lupus. I found if I get frustrated and angry with it it evolves into being even stronger.
Hot showers and swimming drowns Lupus...
And a pain pill at bedtime helps me to unfold in the morning. It helps me not to set up in cement overnight...
And what have you found alleviates yours, Kaylee?
Keep well. Hugs.
05-31-2009, 06:37 AM
those hot dogs and hamburgers look like they are ready for you to share with your whl family.....mmmmmm.
05-31-2009, 07:31 AM
You will find support and friendship here...and someone to talk to day or night.
Glad you found us.
06-01-2009, 12:14 PM
Hello and Welcome Kaylee:yes:
Like Oluwa, I find most of my relief from Lupus by swimming. During the winter, I suffer and long for the summer so that I can get back into the water. Keeping active (as you are doing) is one of the best things that we can do to help us manage our Lupus. Also, joining a support group and learning as much as you can about the disease and how it affects you is also a great help!
I'm glad that you are here with us and you will find that the people here are the most caring, understanding, informative people in the world (since we are a global family here)! Once again......welcome!
Peace and Blessings
06-01-2009, 03:55 PM
Glad you decided to join and you have come to the right place to share and find true compassion and understanding. Sorry you had to go through ups/downs before you were diagnosed only to find you have Lupus. Lupus sucks big time. Since I have joined I have made numerous friends I chat with daily and who check on me along with understand my emotional ups and downs as they too have experienced the woa's of Lupus. I hope you find the same as I am sure you will as the people on here are wonderful!
06-06-2009, 05:14 PM
we are all here to support you through the good and the bad times. you can come on here to vent or just tell us how good of a day you had. we compare symptoms, doctors, stories, reliefs, and medications on here! it's a great support system and i love it. i don't know what i'd do without these guys! welcome, feel free to look around and read about some of us.
This a great group. I feel like I understand alot more of what is going on with my body now...still not an official diagnosis, just well, "I think you have mild lupus, or some other auto immune illness." You will find a lot of awesome friends here too.:cute:
06-06-2009, 08:18 PM
Welcome to the forum Kayley and Lala! You will find friendship and compassion here. These guys have given me so much strength, knowledge and direction. This is the best forum I have ever experienced. Look forward to getting to know you both.
06-07-2009, 07:30 PM
Hi Kaylee and welcome;
You have found a great support group in all of the people here. Everyone is kind and completely understanding of what you are going through. No one will criticize or doubt how you are feeling here, so let your heart spill!!
As for what works, I have found that swimming is the best on my joints and even have my husband almost convinced that we need one of our own for my lupus (unfortuately, we have 3 kids and one of them is a toddler deamon so we have to think about the drowning potential...tough we love him so much!!) I have also found that extreme temperatures are very hard on my body. Winter in Ohio is hell on me and if it is too hot it is just as bad...so hot tubs are out.
I have refused narcotic pain medication for several reasons. Reason one is that I have three kids I have to care for and can not be sleepy. Reason two is that I work full time night shift, so I don't get much sleep. Reason three is that I am a nurse and I am so afraid of becomming addicted that I would rather suffer.
Something I must tell you and all of my friends out there...I have been having a really hard time with my symptoms lately. I started to diet about 2 months ago. I used to be a pepsiholic and chocoholic. I stopped all of that and started drinking diet soda. One of the docs I work with saw me drinking my diet Dr. Pepper (she knows I have Lupus) and she told me that the aspertame in diet soda makes Lupus symptoms worse. I have been off of the diet soda for four days now and am feeling much better. I still have the join pain, but I am not having as much of the neurological problems I was having.
Anyways, welcome and I look forward to talking with you more!