New with a bunch of questions
Hello, I'm 37 and was diagnosed with Lupus about four months ago.
Other than already knowing I had a kidney disease (not nephritis) , I didn't really think anything was wrong with me. I had a strange rash and had a biopsy. I also had some mouth ulcers and stiffness/achyness, but I didn't think anything of it til after I was diagnosed.
I started Plaquenil 3 months ago. So far I do not see any visible difference. Well, the rash has gone away. The last few I have been particularly achy and the mouth ulcers hurt more than usual.
I'm still very confused and scared. Sometimes I get the impression that my life (or at the enjoyable parts of it) is pretty much over. Other times it sounds like if I take the meds, take naps when I need to, etc, I'll almost forget I have it after a while.
Here are some random questions:
1) Did Plaquenil help, in what ways, and how long did it take?
2) What "natural strategies" have helped? (For example, a daily nap, vitamins, etc)
3) I've heard most people with Lupus have to take anti-depressants to cope. Is it really so miserable having this disease?
4) Have your health and/or emotional state improved, gotten worse, or not really changed since diagnosis? Is it going to be a gradual decline for me for the next twenty years, assuming I even live that long? Is it just a matter of time til I'm very sick, in a wheelchair, etc?
5) I have three small children. Anyone here with little kids? How likely is it that I'll continue to be able to take them to the park, the zoo, play with them, etc?
6) What is remission, exactly? Is it likely? Do the drugs cause it, or just dumb luck? Is it something that last years, or a week, or either?
7) Do you EVER have days where you feel normal and healthy, or will I never experience that again from now until my death?
8) (kind of a gross question, sorry) I've been experiencing some pain, irritation and itchiness in my, uh ... well, I guess the medical term is anus. It often hurts when I, uh ... poop. Is that Lupus related? Anything that helps with that? I've had no problems with gas or diarhea or anything like that.
I guess that's it, thanks!
I know how depressing and exhausting it was for me when I first found out I had lupus, it seemed like I was never going to have a normal life again and I think I cried for months after that. But once my medication started kicking in I felt alot better. I guess the plaquenil took about 5 or 6 months to kick in to its full effect for me, but it does wonders, it helped me alot. About your kids, I have a one year old and I play with her and take her places like the playground all the time, we just got back from a trip to the aquarium, etc.. There will be days when you don't feel like doing anything, and sometimes it's because of the flare ups and sometimes it's because the depression sets in. I do have many days though where I feel like i'm not even sick, so just remember there is hope and lupus can be controlled, and I truly believe that anyone with lupus can lead a basically normal life, everyone has their days. Also, I've been on an organic diet for about a year now and it has done wonders for me, i've been in remission every since, and even went through the whole pregnancy process fine. I hope I helped ease your mind somewhat, and also a little bit of prayer never hurts. God Bless and i'll be praying for you.