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Thread: Just when I thought I knew what to expect...

  1. #1
    Join Date
    Dec 2007
    Thanked 0 Times in 0 Posts

    Default Just when I thought I knew what to expect...

    I was diagnosed with Lupus in 2007 and have done tons of research and thought I knew what to expect, but apparently I have lots more to learn!

    My husband was injured at work in June and we lost our insurance as a result. Because we're uninsured, I haven't seen my rheumy in almost a year. I stopped taking my plaquenil 4 months ago because we couldn't afford it. Aside from the return of my rashes, I hadn't suffered much consequence because of the lack of meds.

    A couple weeks ago I woke up with horrible tooth pain. Thinking I had an abscess I called the dentist (I had just gotten my tax refund the day before thank god, or I'd have ignored that too!). As it turned out, I had a bunch of ulcers on my gums that had become infected. The dentist attributed them to lupus, it was not a symptom I knew of and I therefore wasn't looking for them. Long story short, infection ran rampant because I have so many antibiotic allergies and apparently the one I can take (sulfas, although I know they can cause flares, they are all I am not allergic to) and now I have all kinds of dental/oral issues that I've got to deal with. Luckily my step-dad stepped in to pay for this stuff so I can get it treated. The dentist says that I need to see the rheumy ASAP because he thinks this means the lupus is progressing untreated.

    Of course the rheumy's best estimate is somewhere around $600 for all the testing he'll want to do. Obviously my head in the sand approach isn't working, but I can't afford all this treatment either. I am so frustrated!

    I guess I just needed to vent. No real question here is there? Ah well, so it goes!

  2. #2
    Join Date
    Nov 2010
    Philadelphia, PA
    Thanked 93 Times in 65 Posts


    Hello Kimmers, I swear I just replied to this thread and don't know what happened to it? Our healthcare systems SUCK!!!! I dont know about Oregon, but PA has city health centers that people without insurance can access. Its not the best option because waiting time sucks but it's an option. maybe you can look into that were you live. Its a though, good luck!

  3. #3
    Join Date
    Jan 2010
    Houston, Texas
    Thanked 1,757 Times in 1,220 Posts


    Oh Kimmers I am so with you here! I was laid off due to my illness and I have been uninsured since Oct. Texas has no state services and only the large cities have free/reduced hospitals. I went off my plaq. for 2 weeks and my entire body went crazy! I hadn't realized how much the plaq. helped until I was off of it for a few weeks. I started to get lung infections, rashes, hives, mouth ulcers.. you name it and I got it! I have been trying to get SS/Dis since July and nothing yet except denials. I know they tell us we have to stay on top of this illness but it is really hard to do when you have no insurance and no money!

    Please take care of yourself and keep on the meds! Try not to let things go so long but I know that is easier said then done!

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~

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