View Full Version : Hi - new member, just recently diagnosed, feeling isolated
11-30-2008, 09:10 AM
Hi everyone! Glad there's support like this out there. Just got diagnosed with Lupus. The fatigue and joint pain are really, really difficult to live with. I can barely make it to and from work. Have difficulty taking care of myself - doing laundry, cooking, cleaning, etc. My social life has gone to zero because I just don't have the energy. (I totally identify with the spoons story.) I don't want to go on disability because - as a government worker - it only pays $100 per week. Scared I'll be homeless if I can't continue going to work everyday, but meanwhile my home is a mess, I'm not eating cause it's too much bother to cook, and I'm feeling isolated. No family to help me. Waiting for my doc appointment next week and maybe I'll get some meds. How long until I should be feeling better? I hope it's soon.
11-30-2008, 09:28 AM
Welcome to the site. I am sorry that you are feeling so ill. Lupus is a very hard illness to deal with at times. If your doctor puts on Plaquenil, he or she may also put you on Prednisone until the Plaquenil gets built up in your system and fully working. Plaquenil takes about 5 months to get the full benefit of it. They may also put you on NSAID's for the pain. NSAID's are non steroidal anti-imflamatory drugs to help with pain and inflamation. You will learn with time what your limitations are and you will be able to adjust your life to be able to live with this illness. Lupus is a chronic illness with no cure as of yet, but it is not an automatic death sentence like it was believed to be some 40 years ago.
My name is Kathy and I have SLE, Lupus and a host of other auto-immune disorders. I have had Lupus the doctor believes since I was about 5 years old. I will be 50 in December. You see you can live with this illness for a long time. You just have to learn what your limitations are and deal with the illness or believe me it will deal wtih you in a very negative way. The worst thing with Lupus is stress. I know that it is hard with this illness, but you need to try to avoid as much stress as possible. I hope that you will keep posting and we get to know you. Let us know how it goes with your doctor ok.
11-30-2008, 02:07 PM
Glad you found us.
You will have good days and bad days. When you're having a good day, pre cook some stuff and freeze it. You can freeze cooked pasta (plain or in a sauce) and rice and hamburger meat. Then when you dont feel up to cooking you have half the meal already cooked.
I'm on plaquenil and arthrotec75. That combo is working well for me. Kathy's right, the plaquenil can take 5 to 6 months before it kicks in, but to me the wait was worth it. It's made a huge difference in my ability to function.
I'm sure the others will be along soon to welcome you.
11-30-2008, 02:12 PM
Just wanted to add my welcome to the mix :lol: You've been given some good advice already and I hope that you found it helpful. I'm glad that you found us :lol:
Peace and Blessings
12-01-2008, 07:50 PM
Hi Jenn and welcome;
Like The Spoon Theory states, you have to eat. It provides nourishment for your cells and helps ease the stomach discomfort that comes with some of the meds. I know what it is like to not have the energy or strength to cook or even eat a meal. Buy thinks that are easily microwaved or prepare things when you are having a good day and freezing them is a great idea.
I understand what you are saying about losing your job and not being able to work. In this economy it is scary to think about losing your job. We live pay check to pay check like most Americans and the thought of not being able to work puts even more stress on you.
Good luck. I hope the meds help you.
12-01-2008, 08:21 PM
nice to meet you,I'm Ms.Paula, I'm new to this site,but old with lupus,
I've lived with this crappy stuff since 1990.
so remember there is alot of wonderful people here.gee,I chimed in and
in a flash people started sending posts.
they talk to me like an old friend. so I know you will like it,too.
kathy,sits-inthe-corner,saysuzie,rob,they are wonderful. they can answer
all your questions about meds.,lupus.
but they take time out for others,and they are all sick too !!!
you need to talk,we're here.
happy smile-happy smile,