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indigo
09-06-2012, 05:59 AM
Hey everyone,

Sometimes I just get so confused trying to work out what's wrong with me and how to deal with it!! I've been diagnosed with lupus for which I take plaquenil, epilepsy for which I take lamictal and gastroparesis for which I take motilium. I was sick for ages before I got these conditions diagnosed because I didn't know how to communicate my problems to the doctors. I'm so much better than I was before but I still don't know whether I am as good as I can be. I mean I don't know whether any more medication could make me better...

Sometimes I read people's posts and I can see that we all have our bad days so I don't know whether to accept my bad days as something that I have to live with - that medication cannot fix everything. Sometimes I hear about people with lupus who can work fulltime and I think why can't I be like them (I'm studying almost fulltime by distance education but I can only manage it because I can work around my bad days but if I had to go somewhere to study or work I wouldn't be up to it). But it also seems that many people take more medication than I do so I wonder if I took more meds maybe I could do more...

Part of my problem with communicating my problems to the doctors is that I have no idea what 'normal' is. My doctor said I'd probably never know!!! One thing is I'm not inclined to complain about anything now because compared to how I was this state of being is nothing to complain about, but it obviously still isn't 'normal' because otherwise I'd be able to live a more 'normal' life.

So I might try and ask more questions about your experiences so I can start to figure out what to do. I currently need to find a new rheumy so I'm thinking if i can get clear on how I want to manage my lupus before I go it would be good so I can steer him in the right direction. Hmm questions... if you take more for your lupus than plaquenil what made your dr give you more meds? was it just that you didn't feel good enough, did you have specific symptoms or test results that made them decide more was necessary? Did you feel like it was in your hands whether you took more meds or not, like could you pretty much get them if you asked for them?

Thanks

steve.b
09-06-2012, 06:49 AM
unfortunatelly there is no hard and fast rules that apply to lupus.

my rhuemy treats my symptoms.
and uses my blood results as a guide.
he also asks lots of questions.

by the way.....
i cannot work anymore due to my lupus effects.
but i still try to have a relativedly pain free time.

indigo
09-06-2012, 03:21 PM
unfortunatelly there is no hard and fast rules that apply to lupus.

my rhuemy treats my symptoms.
and uses my blood results as a guide.
he also asks lots of questions.

by the way.....
i cannot work anymore due to my lupus effects.
but i still try to have a relativedly pain free time.

Thanks, I saw that you are on DSP, me too and so grateful for that. See it's the fact that they rely a lot on what you say and not just your blood tests that bothers me - what you say makes a difference so you need to say the right thing to get the best treatment! Lupus is so weird - grrr!

tgal
09-06-2012, 03:54 PM
Hi and I want you to know this is a great question. We often talk about our "new normal" around here but finding out what that is only happens when you know everything is as under control as it can be. The problem is that, as Steve said, Lupus is basically treated by treating symptoms. Except for plaquenil, steroids and one of the chemo treatments, everything else is just treated on a symptom by symptoms basis. It is REALLY important that you keep a list or journal of symptoms for the doctor since many of the criteria for diagnosing problems are based on what you are experiencing or did experience even if it is not showing up in test results at the time. I know you don't want to feel like a whiner but since some symptoms come and go they may be on the "go" place when you are at the doctor and he/she needs to know what is happening. I also stress telling everything because, like you, I didn't want to complain and ended up much worse than I would have been had my issues been dealt with right away.

Like you I have seizures but mine are not epileptic. Mine are Lupus driven so I am on several medications for them. I am also on plaq, steroids, MTX, 3 meds for AI diverticulitis (which may actually be chrone's but we won't know until after my colonoscopy), and several more (a total of 14 at the moment). Even with all of these meds I don't feel like I did before and most likely won't ever but I do have good days and, as long as I don't do the things that I know cause me to flare, I am able to enjoy my life and be a part of my daughters Sr. year in High School. I can't work anymore but I will gladly take the good days and when I feel worse than my "new normal" I always let the Dr's know.

Hope this helps