Hello My name is Mickyla, I am 20 years old and I was recently diagnosed with Systemic Lupus. I am currently a level 3. Going without treatment, because I do not have medical. Don't worry I'm not here for the pity vote, just looking to meet people with the same issues, and maybe learn some tricks or home remedies to help with the symptoms. Hope to chat soon!
HI there girl. I am pretty new too it seems to be a quiet group so far. But the post have some good stuff in there if you read it. I have SLE and I am going with out meds too. I have medicaide but the meds mess with my other conditions too much. So I am dealing and trying to not let triggers get me. Each of us have our own triggers, Stress seems to be universal. My name is Aminda. Nice to meet you
Quoting SaintsMamma:
HI there girl. I am pretty new too it seems to be a quiet group so far. But the post have some good stuff in there if you read it. I have SLE and I am going with out meds too. I have medicaide but the meds mess with my other conditions too much. So I am dealing and trying to not let triggers get me. Each of us have our own triggers, Stress seems to be universal. My name is Aminda. Nice to meet you
Nice to meet you Aminda. This group does seem rather quiet. But it's nice to have somewhere to vent! Lol.
Hello, I was diagnosed with APS and SLE in 2008/2009, and I find research is the best thing, but also freaks me the heck out. I learn new things all the time like now with the levels of Lupus, going to check on that now. But on your question about what works, it depends on the problems. I know taking things that boost your immune system is not good, like emergen C and airborne. I did some research on an alternative method that is legal in some states, but not in others, it is an immune supresent, anxeity supressant, sleep aid and has many other helps, that you do not have to take more meds for each item. I have not tried it, but have considered it. It is just so expensive to try and it not work and go through the government processes. Prednisone is a nasty drug, but is cheap if you can get an rx for the mean time. You might also try that tonic water that has quanine (which is what is in plaquanil). Sorry for spelling on some of these. Hope some of these help, if you have specific problem areas and I can help let me know. Welcome, good luck and it is not pity in this group, I hope not anyhow I hope we are here to help each other. Depending on your case also you might try disability it will help in two years from the date of application or acceptance with medical bills. SO plan ahead, it may help with stress, which is one of the triggers go figure. The one idea that is free, and the hardest for many of us is to learn to let things go. Most of the lupus people I know tend to have a Type A personality, and we love to be in total control. I know that is part of my problem, wish I could not give a rip about house, kids, finances, school, work and on and on. Empower yourself the way you already are, find groups, read, research. Not a great club to be in, but welcome.
Quoting DragonFlyGals:
Hello, I was diagnosed with APS and SLE in 2008/2009, and I find research is the best thing, but also freaks me the heck out. I learn new things all the time like now with the levels of Lupus, going to check on that now. But on your question about what works, it depends on the problems. I know taking things that boost your immune system is not good, like emergen C and airborne. I did some research on an alternative method that is legal in some states, but not in others, it is an immune supresent, anxeity supressant, sleep aid and has many other helps, that you do not have to take more meds for each item. I have not tried it, but have considered it. It is just so expensive to try and it not work and go through the government processes. Prednisone is a nasty drug, but is cheap if you can get an rx for the mean time. You might also try that tonic water that has quanine (which is what is in plaquanil). Sorry for spelling on some of these. Hope some of these help, if you have specific problem areas and I can help let me know. Welcome, good luck and it is not pity in this group, I hope not anyhow I hope we are here to help each other. Depending on your case also you might try disability it will help in two years from the date of application or acceptance with medical bills. SO plan ahead, it may help with stress, which is one of the triggers go figure. The one idea that is free, and the hardest for many of us is to learn to let things go. Most of the lupus people I know tend to have a Type A personality, and we love to be in total control. I know that is part of my problem, wish I could not give a rip about house, kids, finances, school, work and on and on. Empower yourself the way you already are, find groups, read, research. Not a great club to be in, but welcome.
Thank you SO very much for all the information! I have tried all those methods... unfortunately lol~ For now, the only thing left that they want to try is a immunosuppressant- transfusion. Which I do not want to do... it's not safe. Prednisone I am seriously allergic to, go figure. LOL! It sucks. I am definitely a control freak, so not having the control when it comes to this disease drives me mad!
Hi Mickyla, Aminda, and DragonFlyGals! I'm Missy and I am new to the group too. I am 40 and got diagnosed with Sjogren's and Lupus on 9/2/11. The sun is my worst enemy and it totally sucks. Sunscreen and shade don't even help. Seems like I'm always stuck inside. Unless I want to itch, swell and be in pain. Stress gets me too.
Quoting Cheepingmom:
Hi Mickyla, Aminda, and DragonFlyGals! I'm Missy and I am new to the group too. I am 40 and got diagnosed with Sjogren's and Lupus on 9/2/11. The sun is my worst enemy and it totally sucks. Sunscreen and shade don't even help. Seems like I'm always stuck inside. Unless I want to itch, swell and be in pain. Stress gets me too.
Hello Missy!
So sorry to hear that. I don't do well in the sunlight either... I get what's similair to a rosachea rash on my body when in it. I use vitamin E on my skin, and CAKE it on before going outisde, even if it's for 10 minutes.
immunosupressant transfusion, I have not hear of that one either. It sucks when our old normal life seems to not transfer to our new life at all and no body seems to understand that. SO sorry about the sun not being a visiting friend to you all. I can be out and get the mask and fatigued, but that is about all. THank my lucky rays.
Quoting DragonFlyGals:
immunosupressant transfusion, I have not hear of that one either. It sucks when our old normal life seems to not transfer to our new life at all and no body seems to understand that. SO sorry about the sun not being a visiting friend to you all. I can be out and get the mask and fatigued, but that is about all. THank my lucky rays.
Yeah it's not a fun proceedure, so I don't want to do it. The sun isn't nice to people with Lupus lol. But I try and get out and see a little bit when I can. Good thing I live in Washington hahaha!
Ah see I lived in Idaho and the cold and wet hurt me so bad, that I moved to Arizona this year so we will see how that all goes. This Lupus garbage suck so much. On another note, I am reading a book the auto-immune epidemic and in the first chapter, but I am convinced that we new a new speciality of drs that just focus on Auto immune issues.
Quoting DragonFlyGals:
Ah see I lived in Idaho and the cold and wet hurt me so bad, that I moved to Arizona this year so we will see how that all goes. This Lupus garbage suck so much. On another note, I am reading a book the auto-immune epidemic and in the first chapter, but I am convinced that we new a new speciality of drs that just focus on Auto immune issues.
The cold bothers me, and the warmth.. lol I need a happy medium. Who's the author of Auto-immune Epidemic? I would love to read that! I second that. We also need more doctors who take ALL medical, not just select few.
super grouch
- Hezekiahs_mom
on Nov. 12, 2011 at 6:18 AM