I was just diagnoised with Lupu. Any suggestions on living with this chronic illness?

Question

I am 33, just found out I have Lupus last week. I have found a bunch of medical advice, now I am looking for people living with Lupus and their suggestions. How can I help my boys who are 13, 12, and 5 deal with my illness. My husband is scared to death. Any advice? Thanks

Answer 1

I have a lot of suggestions but without knowing more about you I am not sure what to recommend. There are many possibilities as to what caused this and finding the cause is half the battle. Something caused your immune system to get screwed up. it can be made better but eliminating the cause will speed the process.

Answer 2

You already have enough useful advice above my input to help you, but as you'll discover in the literature and other sources you'll encounter, Lupus is a very unpredictable affliction. It can be said to be a disease with multi-personalities and may take many 'twists and turns' which are unpredictable. Take the advice of the young lady above who has dealt with Lupus for 20 years now...

There are groups that may be useful to both, you and your husband... check on the internet and/or with your doctors.

I've seen many patients beat L.E. during the years I worked at the University of Illinois Hospital and Medical Center in Chicago. It's not a death sentence, by no means.

I wish you remission, Ed

Answer 3

My sister had Lupus for over twenty years. I know you should wear a hat when going out in the sun for any lenght of time. Rest as much as you can, try to avoid stressful situation. My sister's children were about the same age as your children when she was found out she had lupus, they are all grown now and have children. Follow your doctor's advice and live as normal as you can. People live for years with Lupus, try not to be afraid.

Answer 4

Eventually the Lupus will get its' way like it has for many years and taken many to their deaths. My friend was 74 when diagnosed with Lupus, but at 33 ...wow, that is young and I have no remedy to give. Treat it very serious because Lupus hates the Sun and we need the Sun to survive.

Answer 5

I was also diagnosed, but many , many years ago. I suggest that htemostimportant thing is to learn as much about the condition as you can and to learn what your own personal limits are. The prognosis for lupus is farbetter now than it ever was. Take care and STAY OUT OF THE SUN! Write to me ifyou'd like; I was head of the lupus association of my state.

Answer 6

i was diagnosed when i was 20 yrs. old, i'm 30 now. when they diagnosed me they gave me 6 months to live. my ana was at 10,000 (40 is considered high). i have a 12 year old son. i got him the book 'When Mom Gets Sick". it really helped him understand what i go through. i have the days where i cant function and he understands completely. of course this is how ive been almost his whole life. he kinda used to it. on my "down" days, i take advantage of it by spending the time with him. we lay and watch movies or cartoons. maybe play a board game. its a very frustrating illness that a lot of people dont understand. you just have to keep your head up and dont let this beat you. i've had to have many surgeries because of the limited use of my arms and hands. now im getting stress fractures from the long term use of the prednisone. but my son feels important because i ask him to help me out. i take about 16 pills a day and he knows all about them. he helps me sort them all out and count them. you wont do your kids any favors by just putting on a brave face. you have to explain exactly what is going on with you. dont hide anything from them. my son even goes to some of my dr. appointments with me. he knows more about lupus than some of the drs i went to that couldnt diagnose me! i am so sorry for your diagnosis. but, you will be fine. do a lot of reading. i recommend you get "The Lupus Book" by Dr. Wallace. it will explain everything you need to know. especially how your husband and family can learn more about the illness. i wish you and your family all the best.

Answer 7

I have been living with it for 20 yrs now my hubby was scared and still gets scared but the best I can tell you to do is just live everyday and dont let it get you down because Lupus will try to break you I have been to hell and back with mine strokes hip replacement when I was 21 yrs old but I learned that it wasnt going to beat me I was not going to let it win I have a 15 yr old son and I just live everyday enjoying him and hubby like there is no tomorrow so keep your chin up is the best advice

Answer 8

Lupus is an auto-immune system disorder. What we do in our clinic is to deal with the immune system and it will take care of the condition. I can be reached at [e-mail].

Answer 9

one day at a time. Get lots of rest, and work when you are feeling healthy. I have a friend with it, and she has 5 kids. She has her bad days, when she just wants to curl up and sleep, but she keeps on keeping on. That's pretty well all you CAN do, besides taking your meds, and keeping drs' appointments. Good luck!

Answer 10

www.lupus.org is a national orginization that has links to local support groups. I think the best way to help yourself and family is to get involved with your local group.