I'm 36-years-old, and I just find out I have lupus, right now my doctor say's it is real bad, but with time and treatment it will get better, but so for its worse. I stay so tried and my joint are really hurting, my white blood counts are to high and so are my liver enysems. I want to know what else I can expect, and is it going to get better and when, and can you get ssi because of lupus or medicade anything to help me pay for the medicines which are really expensive. What is the diease going to do to my body. I just really want to know the truth of how things are going to be for me.
Sorry, you are having so much trouble. I wish I could
tell you what to expect but every case of Lupus is
different. I was diagnosed about six years ago. The first couple of years was the worst. But, I chose to not
take any of the Lupus meds. and now I am feeling fine
most to the time. My advice to you is to read as
much about Lupus as you can find. Try Dr. Weil's site
or his books to discover things you can do to help your
body heal it's self. This can be done along with any
regular treatment your Dr. gives you. Your mental
attitude will be important in fighting this. Stay out
of the Sun and take rest breaks whenever possible.
Try relaxation techniques that can be a big help.
As I said before there are books in the stores written
by Lupus patients that may be of help to you. Just
remember not all people with lupus get the same symptoms. As far as disability goes I have heard of Lupus patients getting this but it is often a long
battle and not always successful. Good luck to you.
Denise F I know that each person is different. and I would like to know different things people are tring and just to know that there is someone out there I can talk to. My family is really supportive, but they don't know the pain and anger I feel. I know I will get there this I never let anything in life get me down and I not going to let this, but sometimes it feels like it is winning.
I know how you feel. It's a real downer to not be in
control of your body. Sometimes, when my fever was
eleavated for weeks at a time it really wore me down.
That bothered me even more than the pain.
When I started reading more about alternative ways
to treat lupus I think it really helped me. It made
me feel more in control, like I was doing something
positive to help myself. I think that is the key to
try to mentally stay in control and not let this
get you down. Hang in there.
Denise F I'm tring the relaxing things, I have a question for you did the lupus make your thyroids go crazy, and did you ever get a mono like virus from the lupus. My doctor told me that my thyoids are all messed up and that the mono type virus was all from the lupus. And when will this all stop? are will it never stop messing with my body.
I have not had any problems with my Thyroid. But, there
are thyroid diseases that are auto-immune. Whether it
can be from Lupus or just related to the auto-immune family I don't know.
As far as Lupus causing a mono like illness, I have not heard it put that way. Perhaps you misunderstood the Dr. From what I have read there are studies that suggest
Mono or Ebstein Barr virus may be one of the causes of Lupus. There seems to be a lot of Lupus patients who
have had Mono or Ebstein Barr.
Doctor Weil in his books or web site gives a lot of
good ideas on vitamins and such to help support
the body in this time of distress. All his ideas
can be used along with your Dr's care. Don't let this
get you down. You will have to be careful about your
health the rest of your life but it can get a lot
better. Hang in there.
lightwhight....Denise F is absolutely correct in saying that every case of Lupus is different. You may have the same type of Lupus as someone else, but you will have totally different symptoms/reactions with the disease than what they have.
I was just diagnosed in Dec 2002 and they have yet to 'confirm' that it is actually Lupus, yet I have all the symptoms of Discoid (cutaneous) lupus and possibly drug/surgery induced lupus which did not reverse itself. I have no family history of Lupus. I was also diagnosed with Fibromyalgia (Jan 2003) and Antiphospholipid Syndrome (Feb 2003).
There are three different types of lupus--Discoid (cutaneous) lupus, Systemic lupus (SLE) & Drug-induced lupus. It is also suspected that various illness's, surgery's, serious infections and/or other autoimmune disease's could also be a trigger for lupus.
My lupus seems to be the Discoid Lupus as those are the symptoms I have, yet the doctor won't commit to 'legally' diagnosing me with Lupus until I have had a 6 month check up which will be in August 2003 and we see what my tests show. My Fibromyalgia Dr. (Rheumatologist) doesn't think I have Lupus, he thinks it is only FM (fibromyalgia). I guess I will find out in Aug. But...with my legs looking the way they do and the research I have done...I am almost possitive it is Discoid and the Dr even suggested as much but wouldn't come right out and say so. He said since I had no lesions at the time (but my legs are brown with the tannish colored scars) that it wouldn't be possible to test me for it. With the research I did...I didn't quite believe him, I felt like he was just putting me off and didn't want to commit to a diagnoses of Discoid (only would say that I was +ANA) nor do anymore blood work until he had re-checked me in 6 months. Soooo...I, like you, am in Limbo, waiting forever in the medical form of cyber space!
Yes, it is possible to get SSI and it is also almost IMPOSSIBLE to get it. However I have heard also about alot of ppl who it only took from several months to maybe 6 months to start receiving it. There will also be periods where you will be in remission and at these times you may feel like you want to work again. With SSI, you can work but they adjust your SSI income with what you earn while working. So...if you work while receiving SSI, they will reduce the amount of money they will give you. and if they feel that you are earning too much, they will stop payments all together and then if you ever need it again...you'll have to go thru the hassle all over again to start receiving it.
I hurt all the time. No pain pills have alleviated my pain yet. My memory is shot. i still don't know how I've hung onto my job so far. I work in the medical field and have been at the same place for 13 yrs. I think that is the only thing that has kept me at my job. I work in the physical therapy dept and the 10 or so girls I work with are so wonderful and supportive. They help me out alot and are a great support system for me. So, you really need to try to work for as long as possible. having positive ppl around you is so important.
you sound like you are positive and in good spirits but sometimes this disease can really get you down and depression is also one of the 'side affects' of Lupus, so you want to keep an eye on that.
So....my case scenario is totally different than yours, as everybodies is. There are many wonderful sites online that offer information and support, just don't rely on this as you only means of info. Take your questions to your doctor but also do your own research. You will be surprised at how much you learn! I sure was!!!
Wow, quackers, well said!! Seems like quackers answered all your questions so eloquently that I really didn't need to reply to give info. I just wanted to welcome you to the boards and wish you well. My first couple of years were the worst too, and it comes and goes. I do well, then get sick. At least I am having some days that I do feel better, so much so that when I get to feeling sick I really hate it!! Makes me realize I was feeling pretty good! I hope you feel better real soon!