Hi my name is danielle
i am new to this site and i just need a little advice!! i am 18 and just found out that i have had lupus for two years and i was just told about it a month ago. all this time it has been attacking my kidneys. i was in the hospital for a week they just let me out and now they are telling me that my kidneys are a level 4 and i have to go through all this stuff. i just graduated high school and i havent experienced life and all my doctors are making me feel like its hopeless. im so scared im not ready to die or be bed ridden what am i supposed to do? i just need some words of wisdom.
Thank you and bless all
Daniel...it isnt hopeless at all! At worst, you may need a kidney transplant. Lupus patients due very well with them. Do some reading up on it so you can know what you are dealing with. The known is usually much better than the unknown. I am always much more scared of the unknown. You are young and that will definately work in your favor!
I can appreciate how you feel, but I want you to remember that your hope is just that...yours. Don't let anyone take it from you. I have been battling what up until a week ago my rheumy called a "Lupus-like" condition. Last week he didn't say I have Lupus but that with my family history (mother's sister had it) and my years of Lupus like symptoms that Lupus will probably be in my future. He told me "don't worry, I have many medicines to treat Lupus". After seeing how Lupus attacked my Aunt Darlene, I could have left there in tears and saying "why me?" but I did not. I trust God with my life and I know that whatever He allows to come in is for my good (even if I don't necessarily like or understand it). I refuse to see these crazy symptoms or Lupus (if in fact that is what I have) as a curse. It is an opportunity to be used by GOD...to demonstrate that I can truly do all things through Him...including LIVING with Lupus.
I am 35 and for the past few months walking has become increasingly difficult for me. I have been put on athletic shoes. I say "put on" like they are meds because I used to be the cute heels or sandels girl. Some of my friends/coworkers haven't seen me in flat shoes. LOL I didn't even own athletic shoes before this weekend. Well not the orthopedic kind. LOL But I refuse to get it down. I just went out today and bought some cute outfits to make me feel just as cute in athetic shoes as I do in heels. LOL
I am not going to try to convince you that this will be easy or that you won't have less that happy days, but you can handle this. How do I know? God doesn't put anymore on us than we can bare. And as for your doctors. When they talk hopeless, you talk hopeful. And it isn't rude to tell them you don't want to hear their Lupus blues and if you wanted to be blue, you would write your own blues song.
Danielle, hello! I want to say DITTO to what the others just posted.
Here's another thought: are you a person who feels "better" if you read up on your condition? There are several excellent lupus hardcovers, which you can find in most libraries. Look for Dr. Daniel Wallace &/or Dr. Robert Lahita. Both authors cover all aspects. (I borrowed books first,, and only then decided whether to purchase.)
Thinking of you and sending my warmest wishes, Vee
Although your symptoms seem extreme, there is always HOPE. I agree wholeheartedly with VeeJ - knowledge is the best medicine! If you can't get to a library, have a family member go... there are tons of useful books on Lupus. My favorite is a soft cover - quick read, entitled "Positive Options for Living with Lupus" by Philippa Pigache
One thing that I didn't see mentioned here is that with lupus, we have to stay out of the sunshine because the sun makes all of our symptoms much worse. Since you're so young, that's awful to hear, but you really will feel better if you use 45+SPF sunscreen (re-apply it when needed) and wear a broad-brim hat, long sleeves (close weave and not sheer), and slacks. My doctor told me I could go from building to car; be outside in the early morning and late afternoon; go to a picnic for a short time if I dressed as I described above and stayed in the shade; and never to plan a day at the pool or the beach.
Many people with lupus also become allergic to Sulfa and any medicine with Sulfa in it. I never had an allergy to anything, but found myself allergic to Celebrex because it has a sulfonamide in its chemical makeup. The allergic reaction I had to that was no fun - swelling of my hip, knee, and ankle joints and a really impressive rash. Bummer! But all of that stopped when I stopped taking the Celebrex.
Lupus really isn't the scary disease it was 40 years ago and most of us will live happily ever after - with medicine and staying out of the sun!
well thank you all for all your advice and support. yea about the sun they told me that i need to avoid it at all costs (my rashes are really ugly) lol. but to update about my situation i start my kemo and extra strong steroid meds. 1000 mgs tomorrow!! they say that it should help me out a lot. soo i have hope i am a little scared but i have to much to look on my plate to give up right now. My family is being great and very supportive and that is what i need. im so happy i found this site to because i finally feel like i have found people that cant relate and not just sympathize with me. so thank you and god bless
THERE IS HOPE!! My daughter is 15, just diagonsed May 1st with her first Chemo treatment...she has now had 3 months of Chemo and was doing 3 days of pulse steroids now she is doing weekly and down to everyother week of the 1 mg of Solumedrol(steroid) IV and 20 mg a day....she is on 3 BP meds and alot of other stuff BUT after 3 months she is improving!! She also is class 4 and was on dialysis for 2 months. BE POSITIVE!! WE lucked out and found the BEST DR in CHicago and we live in Omaha.... he is awesome as it is very rare in children/teens and some dr's do not know how to treat it. I am not sure where you live but we could not put a price on our daughter and she is now in an Experts hands! If you want info on him let me know. I also know my daughter would be willing to talk to you if that would help since you are so close in age and the same diagnosis.
Hang in there and we are here for support as we go thru this together!!
yea i am doin good i am feeling a little weak because of the treaments but i am feelin better. i am happy that they are doing so well with your daughter and getting information so fast. i know that there is hope but when u are goin threw a flair up its so hard to keep the smile on. i have a wonderful team of doctors on my side that are very conserned and they only want to help me get better. my family is also very supportive and haveing this site has helped me very much the support is amazing thank you very much. my prayrs are with you and your family
Hi, I'm new too. First, congrats on high school...that's awesome. College is just around the corner, no doubt.
Secondly, I'm sorry that your health isn't what it should be for this point in your life. I've never been hospitalized more than several hours so I can't at all relate to what you are going through with that... but I wanted to send support.
You are doing great with this... thanks for sharing it with me.
Thanks so much for the support. yes college is right around the corner i have to take online classes due to the fact i never know when my blood count goes down because of my kidneys. but my health has been great for the past week!! and i got a job so things are lookin up and its keeping my spirit up. thats great that u never have to stay in the hospital over night. if u dont mind me asking what are your problems cause everyone seems to have different ones. im still trying to learn what everyone else does to keep there health good. any adivise u have would be great