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Thread: Frustrated

  1. #1
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    Question Frustrated

    So, I started coming down with a chest cold / upper respiratory infection (at least that's what I think - I usually get them every year).. and since it's the first time I've been sick since receiving my Dx, I emailed my rhumy to see if he wanted me to come in and see him or just go to my PCP.

    He's faxing my PCP a list of labs he wants taken and forwarded, that way I don't have to go all the way out to Ann Arbor just for a blood draw. And he also mentioned that my Vitamin D levels are in the tank. He called in a script for me for a supplement and I have to take that for the next 3 months and we'll re-check. The even more frustrating thing is that all of the lupus related tests all came back clear from November!! That's why he wants some tests redone right now because he thinks I might be flaring. I expressed my frustration with him about having had no validation as far as test results (kind of silly of me I know.. as I KNOW that there are very few definitive tests for lupus to begin with). He reassured me that this in no way changes his opinion that it is lupus that we're dealing with, and he insisted that the recurrent negative tests are quite common anyway.

    Also, I'm concerned regarding the Vitamin D deficiency!! I know that it can be cause by a few things. I live in SE Michigan, so I know I don't get enough sun.. not to mention when I do, it makes me feel like crap so I wear sunscreen, etc. Then, it could be a dietary thing... which I really don't think it is... I drink milk pretty regularly / eat cheeses (I LOVE cheese) / eat yogurt, etc. Then there's the possibility that it's an early indication of kidney involvement.... that's a scary thing.

    I just wanted to vent..... I know you guys can listen and sympathize from a different perspective than the rest of my support system. I need some time to digest all of this before I can try to fully explain it to my husband.. sometimes, I just don't know how to find the right words.

    Thanks for listening.
    Shannon
    Divorced
    Registered Nurse
    Proud Momma to an 8 month old kitten. She was on death's door when I found her and now she growing up into a beautiful cat, she's my baby.


    Life isn't about waiting for the storm to pass... it's about learning how to dance in the rain.

    God, grant me the serenity to accept the things I cannot change...
    The courage to change the things I can...
    And the wisdom to know the difference.

  2. #2
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    Hi Shannon, I know what you mean in regards to the Vitamin D deficiency, it took me a year of taking Vitamin D Rx before my levels came back up. Now I am faithful to my D med's because the return of my Vitamin D has eliminated the black circles around my eyes. I seriously looked and felt like I was on my death bed. Vitamin D deficiency can cause a lot of pain. I never dreamed that such a simple vitamin was really that serious.

    Hope you get to feeling better soon!

  3. #3
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    I do have dark circles around my eyes.. like, to me, it looks like I got punched!!

    Is the Vitamin D deficiency common amongst lupus patients? It seems to me to be that classic chicken vs. egg argument. Did the lupus cause the deficiency, or did the deficiency trigger the lupus? Or is the deficiency standing alone?? Ugh, it's crazy!
    Shannon
    Divorced
    Registered Nurse
    Proud Momma to an 8 month old kitten. She was on death's door when I found her and now she growing up into a beautiful cat, she's my baby.


    Life isn't about waiting for the storm to pass... it's about learning how to dance in the rain.

    God, grant me the serenity to accept the things I cannot change...
    The courage to change the things I can...
    And the wisdom to know the difference.

  4. #4
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    So sorry that you're feeling poorly. From what I understand, Vitamin D deficiencies are VERY common with SLE and Sjogren's Syndrome, so you're definitely not alone.It sounds like you got yourself a good rheumy...hold on to him!

  5. #5
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    hi serenity,

    yes, vitamin d deficiencies are very common, but your supplement should help. Sounds like you have a caring dr, so let him gently guide you through all of these fears about the unknown. We are here as well.....and all put together, i think you have a good team....
    Phyllis

    share a smile today

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