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sabrinabythesea

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I'm stunned by recent judgmental messages from online friends who tell me lupus is not medical, it's a dietary issue and I can cure it if I commit to eating differently. And that if I'm not willing to give it a try, at least, they can't believe I'm truly dedicated to being healthy. These people have not experienced lupus, nor have they been to medical school! But I have nobody else to reach out to.

I'm on CellCept (1000 mg/day) and Plaquenil and fish oil and vitamin D and turmeric and Naproxin and sometimes cyclobenzaprine (a mild muscle relaxant, I can't tell if it helps... isn't that always the problem?) My rheumy told me to go ahead and take the cellcept with food, even though that hampers absorption, because I "didn't need" to get every ounce of benefit from each pill and the digestive issues with empty-stomach cellcept 2x daily was really hard. But I think going back to taking my pills on an empty stomach might be the next experimental step in treating lupus without seeing my doctor, who's no longer covered and works an 8+ hr drive away...

I walk every day for exercise and necessity. I wear sunscreen. I'm at an out-of-state summer internship so won't see my rheumy until September, if I'm lucky. I won a fellowship, it's like they pay you to go to school! An amazing honor and opportunity. It's such a big deal...it was a fellowship specifically for students with disabilities and other impediments to "normal" student life possibilities... but it makes me ineligible to medicaid and the insurance plan they offer looks terrible, I'm so worried...

My rheumy has spoken with me once over the phone, he's great, but I don't expect anybody to work for free and that's basically what phone calls are. I respect his time.

But I'm pretty boxed-in as far as options go...

What do you do when cellcept and plaquenil don't work? Is there a treatment next step? My organs aren't failing. I'm not in a hospital. But life is painful and difficult because of all the other symptoms that don't require hospitalization but do make 40-hr work weeks + bus commuting in the 90's miserable.

As soon as I landed at this internship (right after finals week and moving furniture to storage and renting a van and driving for a day), I started making rest a priority to prevent a flare. No luck. Stress is my trigger, and stress is my lifestyle. I'm four weeks in, and I'm getting increasingly sick. Should I be even trying for a ph.D and a full-time career? Is that even an option for most people in their 40's with lupus and no familial or friend support? It's just me and my cat.
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