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Thread: Vent re: "Lupus not that bad"

  1. #11
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    Quote Originally Posted by Derrie View Post
    Try feeling like you have the flu every freaking day for over a year, and tell me it's "not that bad" because you're, what, not in immediate danger of death?

    This is why I don't tell most people I have something going on. I don't think I could stand the stupidity of responses.

    That this came from a doctor, though, is just insane.

    (Ha! This post makes me a Puppy!)
    I love that explanation.

    Thanks everyone for the support.

  2. #12
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    This is a good thread. Let's keep it going.

    I don't have a story at the moment but have enjoyed the others

  3. #13
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    Quote Originally Posted by Nonna View Post
    This is a good thread. Let's keep it going.

    I don't have a story at the moment but have enjoyed the others
    Oh I have another one, last month I ran into a guy I went to school with. He says "Oh you still have that sick thing?" really it's not like it was a secret what I had, and I went to a super small school so everyone knew. I was like "Really? I can't believe you asked me that?"

  4. #14
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    Quote Originally Posted by Mica View Post
    Oh I have another one, last month I ran into a guy I went to school with. He says "Oh you still have that sick thing?" really it's not like it was a secret what I had, and I went to a super small school so everyone knew. I was like "Really? I can't believe you asked me that?"
    Oh nice one!

    This isn's mine but a former classmate of mine recently posted this on facebook.

    She ran into a friend she hadn't seen in a while and the friend said " OMG,are you okay? Are you on prednisone?" and she replied...."Ummm, no I am 8 months pregnant."

    Made me laugh out loud that day!

  5. #15
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    May I add my topic related vent to this? Thank you! As I've said before, I work for a company whose business is the business of disability (medicare, medicaid, social security, advocacy, etc). As Office Manager it is my job to do intake. Ok, no problem. I'm polite, I am caring and concerned, blah, blah BLAH. I don't judge (don't get paid enough for that!) I just take the information and channel it accordingly. ANYHOW... here's the point of this vent: I get people who want to go on disability because "their back hurts". Not "I've been in a horrific accident and totally destroyed my back" or "I have a back ruining REAL disability" or any other legitimate DESERVING reason. No. Their back hurts and they just don't want to work. I actually had one person on the phone tell me that I couldn't possibly understand how hard it is for them to work. My response? and I don't share it often. "I have Lupus. I have migraines. I have high blood pressure, tinnitus, restless leg syndrome and a neck that looks like a game of pickup sticks and if I jar it or turn the wrong way I and suddenly in black out agonizing pain. I also work 40 + hours a week and take care of a household." Click. Please note that I'm ALL FOR those who truly need it and deserve it to get SSDI and any other assistance they can get but I'm totally against people trying to scam because they are just too blasted lazy to work for a living! So ends my vent. I thank you.
    "I'm going to get healthy or die trying"

  6. The Following User Says Thank You to ruziska For This Useful Post:

    Mica (11-07-2012)

  7. #16
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    I <3 this thread more than I can express!

    Here are some of my rants:

    - My younger sister asked me to watch my nephew one night last month on last minute notice, from 4pm - 1am, during a horrible flare and while I had Walking Pneumonia. She showed up two hours late, arrived back late and when I was short with her, she snapped back, "Oh come on, you can't really feel that bad, stop dramatizing! I have Fibromyalgia and look at ME. Take some Emergen-C, I'm sure you'll be fine!"

    - I went to Urgent Care 10 months ago for another presumed pneumonia diagnosis. On my chart I gave the nurse my abbreviated medical history including Lupus and that I'm on Plaquenil. When the PA (she was like 27 years old with gum in her mouth) came in to the room she didn't even exam me and just said she would write me an Rx for antibiotics. I asked her if we should do a chest xray to see if I have pleuresy/pericarditis that could be contributing to my symptoms due to my SLE? Her response, "if you're just on Plaquenil your Lupus isn't bad enough to worry about it".

    - Often when I walk up the stairs of my office I limp and struggle due to the horrible pain in my knees. People are constantly asking how I injured myself or what's wrong. Not wanting to go in to an explanation of a disease that few people have heard of let alone understand, I give a sarcastic reason and they eat it up. "I won first place at the Rodeo over the weekend!" "My barista had it coming to her for getting my order wrong again!" "Haven't I shown you my AARP card?" Most people who see me limp on the stairs now think its a big game, lol.
    "Fortuna Favet Fortibus" ...Fortune Favors the Brave.
    ~ Diagnosed SLE Lupus, Endometriosis, Anxiety Disorder, IBS~
    Meds: 400mg Plaquenil, Prednisone 6-day pack (for flares), 800mg Ibuprofen 3x day, Xanex (rarely), Vicodin (rarely)
    Supplements: Omega 3/6/9 complex, 2000iu Vit D, Iron/B12, Calcium, Folate complex, Cranberry, Probiotic, MSM/Glucosamine.

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