Anyone here have Lupus?

[siberakh1]

I’m sorry to hear that Water. *GREAT BIG HUGS*

I don’t have lyme or lupus (though I know several people with one or the other), but another autoimmune disease, Chronic Fatigue Syndrome. I’ve had it since 9th grade in high school. I got sick with a mild case of pleurisy and just never recovered, getting worse instead. I went from being able to run circles around everyone and seemingly being able to do it all to constantly being tired. In the middle of July, I was wearing sweaters and turtlenecks outside in the sun because I was cold. I only missed 2.5 days of school for doctor’s appointments throughout the whole ordeal though, so many didn’t realize how bad off I was (if you feel crappy at home and you feel crappy at school, at school, at least I can feel crappy and accomplish something rather than feeling crappy and bored out of my skull).

Yes, some things don’t always show up in tests. Many people who get Lyme disease never develop a bullseye at the site of the tick bite (something like 40%, possibly higher). Mono can do the same thing. I had 6 mono tests. The first 5 were when I was at the doctor feeling lousy. They randomly did a 6th one on a visit when I was feeling rather good (all things considered), just on a hunch, and low and behold, I had mono, and ebstein-barr. Chronic Fatigue has no test. It’s process of elimination. The doctor I ultimately went to (I had to go to a shrink at one point to prove I wasn’t faking it for attention – me who hated needless attention) was a doctor who specialized in homeopathic treatments along with traditional medicine. Two vitamin C IVs and a large paper grocery bag of 13 vitamins, pills and things to kill bacteria and yeast in my system (my immune systems was the equivalent of an AIDS patient at that point… it was hanging by a thread) and several months, my immune system was back closer to normal.

I can’t run the schedules I used to. I can pull an all nighter here or there (I save up for when I see friends), but if I’m tired and I need to crash, I crash. I had a job I moved to and had to quit it because my health was suffering because my position was expendable time wise (with travel time and work, 50-70+ hours a week installing things around the country) because the customer’s needs were more important. I take longer to recover from tougher illnesses (flu, infections, etc.). I did learn to listen to what my body needed though when I was sick, so I’m pretty good at judging what my limits are. I push to them, and when I feel I’m at a certain point that I know is there, I back off. I know my breaking points in my health and I don’t compromise because I can’t. The bills were very costly, eventually paid off, and I do run into doctors who question whether CFS exists. I have to be careful when I go to doctors and I’m picky.

I feel lucky because I was able to find a doctor to get me back up on my feet, there were people who would come in for treatment with CFS bound to wheelchairs because they were so bad, and I had family and some friends who knew something was wrong. They still don’t know what causes it, but they are getting closer. I’ll always have it. I just work with what my body tells me and try to get a regular schedule of rest, food (I don’t eat a lot of junk food and never cared for it – like greasy stuff), and I exercise regularly. Everything combined seems to help. My pledge mom in a music fraternity I belong to (Sigma Alpha Iota: think more honorary/professional in nature … not the crazy kind you hear about – I just had to pass a test and do a recital) had CFS too, so that helped a lot as well. Most of my professors were great about it in college. Unfortunately, the ones who didn’t believe me (and refused to check my medical records) were the ones in my department… needless to say I didn’t do so well in some of those classes. I got the degree and ran at that point and was glad of my other profs.

Ok, it’s late and I’m not sure if this makes any sense 😛 I think I’m rambling 😯 If you ever need anything though, feel free to PM me or something. Also, we’re all here for you 🙂

[Phil the Dragon]

Hey Water,

I’ve known a few people, from friends to patients, with lupus. It’s hard to diagnose due to the changing levels in the body. It’s almost like an allergy, where you have to build up enough of an intolerence, from what I’ve heard. Definitely look into the homeopathic remedies. Keep informed, get rest, drink lots of water, get massages, and find support groups. And remember as hard and scary as it can be, being as informed as possible, will help to empower you.

[Alyssa]

Wow, that must of felt aweful because ppl didn’t believe you. I am glad you have and know to listen to what your body says. It must be very dificult to go thru something like that.

[drag0nfeathers]

I haven’t read the other posts yet in this topic, just Water’s first one but Lupus is no joke. You HAVE TO stay on top of it!!!! I don’t want to frighten you or anything Water, but it can be EXTREAMLY SERIOUS!!! My sister’s friend Laurie died from Lupus, but she did also have a severe case & alot of other medical problems that contrubuted to the condition.

She was always tired and had alot of rashes and fevers, but was generally normal otherwise. Within about 8 years she went through 2 seperate kidney transplants and was always in & out of the hospital. After the 2nd transplant she was doing okay for about a week and the kidney rejected & everything went downhill from there. They were going to try it a 3rd time, but for whatever reson the opertaion would have just most likely killed her because she was so weak, and was left with just the one kidney. Towards the end she had to have her blood filtered daily in this machine just so she could get through her day. The whole thing was realy sad.

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[Pamela]

Hey, Water, I’m sorry to hear your news. I don’t know anyone with lupus but just general advice: if it is at all possible get a SECOND OPINION, from a specialist if at all possible. As Drag0n wrote it can be serious and it would be best to consult with someone who treats it on a regular basis. Lupus is sometimes called the great imitator because it often looks like other diseases. It can be tough to diagnose and it is VERY possible to mis-diagnose it. This applies to lyme as well – they are finding out that some people diagnosed with lyme actually have something else but once the diagnosis was made the doctors STOPPED LOOKING. If you don’t look for something you won’t find it.

I’m not writing the above to make you feel bad or add to your stress. It’s just that we are raised to believe the doctor and most people take everything they say as gospel. Women, especially, are taught not to question. Doctors make mistake just like everybody else plus medicine is a big grey area. Several diseases can have similar results. For a diagnosis of this magnitude I believe a second opinion is a must. Your doctor should not mind at all – really good doctors will actually encourage a second opinion.

My sister has diabetes and was overwhelmed at first. But she took it a day at a time and coped with what she could. They say if you do anything 21 days in a row it becomes your routine and the stress will go down.

Good luck! *sends hugs and best wishes* I think what you REALLY need is a get well poad. 😀

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