View Full Version : Help??
05-13-2009, 06:05 AM
Hi.. I'm Wendy.. new to all of this and not sure if I know what I am doing, so here goes..
Have been diagnosed with SLE - about 4 years now - although suspect have been suffering from it for much longer!?:unsure:
So many different things happening.. confusion, memory loss, nose bleeds, sore muscles, headaches.. ra ra ra
Not sure if it is relative to the lupus or just a bad run?
I've read other's postings/blogs and must admit to being rather scared.. omg .. it's going to get worse :wideeyed:
I'm a single mum.. three kids.. from 9 to 14 yo. No partner. Reasonable job. Juggling finances, time, sleep, the lot but NOT complaining. Would be really nice to have some support though.
Well you found the right place for support answers and just to vent. So ask or vent away we are here for you.:wink:
05-13-2009, 07:57 AM
You have come to the right place for support and friendship. This is a terrific forum, filled with members who are kind, caring, knowledgeable, and supportive. I understand your fear. Use it to motivate you to become as informed as possible about this disease, your symptoms, your body. Keeping a journal of how you are feeling, any new symptoms you are experiencing, times of day you feel better/worse, reactions to meds, etc. will help you learn more, and this journal will also help you when you have an appointment with your physicians. Read the sticky notes at the top of each part of the forum here...they are filled with great information.
You are not alone. Ask any question. Participate often. We all learn from the sharing and caring of others.
Wishing you wellness today.
05-13-2009, 08:51 AM
Hello and Welcome to our family!:yes:
You've already been greeted by some of our members who have told you that this is the place where you will find support, comfort, answers, understanding and, especially, you will know that you are not alone.
Everyone here is willing to help you in any way that we can and I hope that we can help to alleviate some of your fears!
Peace and Blessings
05-13-2009, 07:31 PM
you are correct, it is nice to have support, and this is where you will find many people ready to walk beside you.
Are you seeing a rheumatologist? has the dr. started you on Plaquenil?
Also, my rheumy can help me past a flare with a Medrol injection. This is a steroid, but the amount is minimal (can't remember the actual amt.), and it really helps me get past a flare. You might want to ask your dr. about this treatment option.... but check with your insurance, mine only covers part of my injection, and my part is $95.00. I believe a pill form is available, and that insurance will cover it. You can only get the shot three or four times a year, but it really helps me.
You know, "the worst does not have to be." Maybe your disease won't get worse. Some people have positive responses to treatment options, and some members are enjoying their disease being in remission. Wherever we each are with our own case of lupus, we have all had to identify new normals. Very often we have to adjust our lives in order to minimize the symptoms, but this just means we learn a new way to live. We help each other learn how to live with lupus, and i am forever grateful to this membership for teaching me such a valuable lesson.
so glad you are here, i look forward to you joining our family of the sky.
05-16-2009, 01:51 AM
Thank you to everyone that responded so quickly so my meltdown!!
Will look forward to further chatting :yes:
05-16-2009, 02:18 AM
Hi, wendy my name is maria i was a single parent for 10 yrs i have 4 kids i understand everything you are going though i have lupus for about 8yrs i my kids run from 14-20yrs 1 grandchild i'm only 38yrs old but i feel like i'm 62 sometime i get tried that i could sleep day and night . just take day at a time don't worry about tomorrow just do what your could do today becuase the more stress your have your lupus flare then kids seen that a worry . eberything come together at the end . see i found a man who loves my kids and me . just everything takes time . here you will find people that understand you. we are all here for you
05-16-2009, 02:20 AM
Hi Wendy... :wavey:
I missed out on welcoming you cuz I was gone for a few days. I wanted to stop in and say Hi. I'm Lori and I was diagnosed at age 18 and have had Lupus for 27 years now. You are most definitely not alone in what you're going through. We've all been there at one point. We know just what you're going through and are happy to lend you support. And plenty of understanding. Really sorry you're suffering and feeling alone.
I do want to offer you hope for the future though, I had a very rough start when I first was diagnosed, but once we found the right treatment that worked well, I went into a remission that has lasted for about 16 years now. During that time, I was blessed to have my 2 children, a son who's 16 now, and a daughter who just turned 13.
There's a new member that just joined today that's from Australia...sorry, I'm racking my brain but can't think of her screen name right now. I think you'll find her thread in New Members forum. Also another member named Hazel, who's 17, is from Australia. I'm sure she'll be along to welcome you too.
Definitely make yourself at home and let us know if we can help you with the site or answer any questions.
Most importantly, know that you are no longer alone in your journey.
05-16-2009, 10:33 AM
Hello and welcome.Hope to catch up with you soon.
05-20-2009, 02:42 AM
Thanks for your welcome and your understanding. Sometimes I really do think there is not a soul out there who really understands what it is like. Thank you.