Hello, I am new to posting on bulliten boards. I was officially diagnosed with SLE for just over a year. For many years the doctors couldn't figure out what was going on and many told me that I was just over reacting to the pains and other symptoms. When I was diagnosed it was both a relief that now there was a name for everything that had been going on, and a sense of being all alone. I am struggling with taking so many medications to try to control it and what it is doing to my body. I live alone and don't really have anyone that I can just go to that understands. I have read up on dozens of web sites to try to learn everything that I can. Sometimes, they seem to be more often now, I just get to feeling so miserable and it so much pain. I don't want to go back to the Doctors anymore because I don't want anymore medications. As it is I can't afford what I have to take monthly and endup trying to pull overtime at work to pay for the medications. Sometimes it gets down to one meal a day or medications. I have tried to get aid and don't qualify. I am getting tired so easy lately and am really getting flusterated with not being able to do everything that I used to. I refuse to give in to the fact that everything I read keeps telling me that I have to learn what I can't do anymore. I want to be able to do anything that I want. I don't want to be on medications anymore. I don't want this disease anymore.
I tried to go to a local Lupus support group. It wasn't quite what I expected. There wan't anyone with Lupus there that I could talk to. Those who were there had Fibromyalgia. The spokes person of the group didn't have either. They were just there to learn more about Fibromyalgia. I wish there was someone out there that I could just talk to that understands what I am going through and can help me with their personal experiences.
I try talking with my mother and she means well but doesn't understand. When I am having a bad flare I will call her because I need someone to talk to and she will say that I have 5 minutes to talk about it and then have to move on and pretend like it isn't going on and to think of only the good things in life. She means really well and she has even told me that she feels helpless because she can't fix it and make it all better. She says that she can't think about the fact that her daughter has something the that could put me on disablility one day.
If there is anyone out there that I can just talk to and get more answers that is going through the same stuff that I am I would be very appreciative.
Hi, Opal. I'm sorry you are going through such a hard time with this illness. Lupus can be very hard to deal with even when you have family and friends to turn to - it must be even harder when you live alone and feel so isolated.
Have you contacted the Partnership for Prescription Assistance to see about getting some help with your meds? It is a national clearinghouse for about 450 different prescription assistance programs. They have a website - www.pparx.org - or you can call their toll-free number at 1-888-4PPA-NOW. Maybe if you can get some of your medications provided, that will take some of the financial pressure off.
I know you want to wish this illness away - all of us would like to sometimes - unfortunately, this disease doesn't go away just because we want it to. I wish I could tell you your life can go on exactly the same as before, but it doesn't - you and I both know that. But your life DOES go on, so you have to learn to accomodate this disease. Remember too that lupus itself can cause severe depression, and depression makes pain seem worse. So it's really important to talk to your doctor about your depression, because it can affect your health.
And even though you may live alone, you don't have to be alone with this disease any more. There are people here to listen and try to help. So feel free to consider us your lupus family.
Thanks for your reply. I don't qualify for the PPA because I already have insurance and their applications state that you can't have prescription ins to qualify. It kind of seems that when you try to help yourself you just get shot down.
I know exactly how you feel about not wanting this disease any more. I also get sick of taking all meds and just want to chuck them. I'm lucky that I have an excellent rheumatologist who listens to me when I whinge to him about everything.
In Australia the maximum we pay for prescription meds is nearly $30. Some are more but we have the PBS which means that the Australian government buys meds at a cheaper price and passes that on to the Australian public. If you get government benefits like I do you get your meds for only $4.70. We also have the safety net which means that once you reach a certain amount of prescriptions for the year you get the rest of them for nothing. I reached my limit in late September and haven't had to pay for any meds since then. On the 1st January I will have to start paying for them again. Its a great system but unfortunately its under threat because of the Free Trade Agreement we signed with the US.
Well I think I've rambled on enough for now.