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  1. Replies
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    I also forgot to mention that he and one of the...

    I also forgot to mention that he and one of the main showrunners for a national aps orgnization both informed me that sle activity and aps activity tend to go hand in hand. By that I mean that when...
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    It's bit about a month and change since my last...

    It's bit about a month and change since my last update-due to the chaotic nature of so much going on & then braving a week long vacation last week (it was wonderful-orginally from ontario's sunset...
  3. Uplifting advice about living with chronic illness.

    I'm not entirely sure I'm allowed to share links or if this is the proper place to do so-if not I apologize sincerely.

    I stumbled across this and wanted to share with those here I feel a lot of...
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    Thank you again for replying & support. I know...

    Thank you again for replying & support. I know that it's all a lot to take in, and there isn't much to be given in the ways of advice.

    Unfortunately, I'd forgotten his office isn't running normal...
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    Update: Early Monday morning I was woken up by...

    Update:
    Early Monday morning I was woken up by some significant chest pain & shortness of breath. After not relenting for about an hour, I woke my husband up and we headed into the ED.

    My oxygen...
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    Thank you for your reply. Yes I have been tested...

    Thank you for your reply. Yes I have been tested for the antibodies (along with the lupus anticoagulant, acl & anti-beta). My Aps diagnosis is what actually lead to my sle diagnosis-as I had been...
  7. Thread: Seizures

    by Bakedtater08
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    I have no idea why my reply seems glitchy. I...

    I have no idea why my reply seems glitchy.

    I could only edit it via the blog option but maybe it'll seem more understandable without the extra nonsense.

    I have cns involvement & seizures. My...
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    APS and anticoagulant failure

    Over the last several months my APS seems to be on a rampage. I've had previous lower extremity dvts, upper extremity dvts and a history of PE.


    Prior to the last two months, my last dvt had...
  9. Thread: Seizures

    by Bakedtater08
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    1,003

    I have cns involvement & seizures. My seizure...

    I have cns involvement & seizures. My seizure activity was quite active (I've found they kick up when I'm flaring) for quite some time. I know how you feel about the driving...
  10. Experience with Upper Extremity DVT post picc line?

    I haven't posted in quite awhile-although I'm happy to relay we welcomed our beautiful baby girl 3 months ago. Since then my lupus has kicked into overdrive & I just underwent my third kidney...
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    Personally I noticed the exact opposite, I went...

    Personally I noticed the exact opposite, I went from severely irregular cycles to clock work cycles after a month or two beginning plaquenil & have been like clock work ever since. Once pregnancy is...
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    First off I'm gonna apologize if this sounds a...

    First off I'm gonna apologize if this sounds a bit jumbled, suffering from a bad respiratory infection atm & my brains foggier than usual lol

    I have stage two ckd, I think as with anything it all...
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    Tell God your plans

    I'm posting this here because I feel it the most appropriate place for it-I feel that without faith & hope this as with any victory I gain, wouldn't be possible without belief in a higher purpose.
    ...
  14. I'm not sure about arthritis affecting both and...

    I'm not sure about arthritis affecting both and not a single limb joint. I have had arthritis in left knee for over a decade due to an old basketball injury & not my right. Same with my ankles & even...
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    What do you drink?

    We all know pop (soda) is bad for us. And me, like most folks, drink way more than I should.

    Having secondary ckd only increases my need to stop drinking it. I know it's bad-ok really bad-for me,...
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    Leahc: thank you for response & I am so sorry...

    Leahc: thank you for response & I am so sorry your son had to go through so much! I'm glad to hear he is doing better!!! I've taken my brother all over the place for so many of the issues going...
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    Just thought I'd update: after seeing the doctor...

    Just thought I'd update: after seeing the doctor & having some tests run looks like i have paracarditis & pneumonia : ( so hopefully this is all flare related issues, time will tell!
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    Lupus in Juveniles

    It's late here, but I'm going to try and ask & explain this as logically as possible...

    I am not familiar with lupus in juveniles (although my symptoms began when I was in my mid teens-but I don't...
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    Thank you for the responses. I know so many are...

    Thank you for the responses. I know so many are affected by photosensitivity-as you mentioned scalp involvement was one of the first symptoms I had years ago & I pretty much live in my hats lol what...
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    Two years later & finally a court date

    I had just mentioned on another post that I've been waiting two years to get my hearing for disability-originally it was suppose to be last December but due to the shutdown everything became backed...
  21. Thread: Crafting?

    by Bakedtater08
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    I just happened across this browsing the forum &...

    I just happened across this browsing the forum & I was actually just asked this question on my blog (craft blog). There are a bunch of stipulations wether you're on disability or not-disability just...
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    The vampire queen

    My question, is sort of a two part question. I'm gonna backstory before I ask so maybe some people can relate to either lol

    First, I have had photosensitivity since my early teens (I'm 27) over...
  23. X-rays are a good start but they also don't show...

    X-rays are a good start but they also don't show everything (I had several recent spinal X-rays that were "normal" but my ortho sent me for an MRI (and a bonescan), low and behold a herniated disc...
  24. This to me sounds like some sort of nerve...

    This to me sounds like some sort of nerve compression taking place in the spine. I don't think I'm allowed to post links, but you can jump on google and search differed pain from the spine (I'd look...
  25. When you're in a low, what lifts your spirits?

    Although I'm doing really well for only being 1.5 weeks post op from my spinal surgery (degenerative disc disease) I'm finding the severe limitations in place are...well frustrating. It's not...
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