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Type: Posts; User: Kami

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  1. Greetings! Just want to let everyone know about...

    Greetings! Just want to let everyone know about our next meeting.
    April 13th at 1pm
    Pine City Public Library, Pine City, MN
    Our email address is [email protected] to RSVP or if you have...
  2. Thread: Young people

    by Kami
    Replies
    23
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    3,947

    Thanks Phil for posting that news report of the...

    Thanks Phil for posting that news report of the two girls that met in the hospital. I have shared it with everyone in our support group and I am hoping that our young lady may be able to contact...
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    Before being diagnosed I went in for a regular...

    Before being diagnosed I went in for a regular physical and the doctor asked me when I had my tonsils removed and I said NEVER. He said "well it looks like they just dried up then." I always...
  4. Thread: Chemotherapy

    by Kami
    Replies
    0
    Views
    1,410

    Chemotherapy

    This is what I learned about chemotherapy this week. There are different types, some are made with chemicals, others are made with natural stuff. The ones made with natural stuff are "biologicals."...
  5. Thread: Young people

    by Kami
    Replies
    23
    Views
    3,947

    Hi Phil! It is, I am so glad she came. Her and...

    Hi Phil! It is, I am so glad she came. Her and her mom came and I think they had fun. We had kind of a goofy meeting, no medcal info or speaker, just fun Christmas games. We did have some really...
  6. Thread: Young people

    by Kami
    Replies
    23
    Views
    3,947

    Young people

    Hello Everyone!

    I have a question to ask. My daughter and I have a support group for vasculitis in Minnesota and this weekend I met the most remarkable young lady. She has had vasculitis for...
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    795

    The only thing I can think of is maybe drug...

    The only thing I can think of is maybe drug induced vasculitis could be cured or stopped by stopping the medication that caused it in the first place?
  8. Replies
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    I would like to go but don't have the funds at...

    I would like to go but don't have the funds at this time.
  9. Replies
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    795

    Thank you both! This is great! Have a good day!

    Thank you both! This is great!
    Have a good day!
  10. Replies
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    795

    Help finding Anca for dummies

    Sometime ago someone posted something called ANCA FOR DUMMIES I think? I want to go back and read it but I can't find it back. I am sorry I am still learning how to navigate all of the information...
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    Sorry, should say TIM not time. I have a hard...

    Sorry, should say TIM not time. I have a hard time with this message stuff lately. Sorry!
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    Thank you Tim! All I did was get a bunch of us...

    Thank you Tim! All I did was get a bunch of us in the same room. Thank you Time and Red for showing up and not leaving me sit in the library by myself all day! Our group is only as good as it's...
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    I copied and pasted that message and it slammed...

    I copied and pasted that message and it slammed my words together - sorry!!
  14. Replies
    12
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    1,240

    ThanksRed! Fornever having had one before I...

    ThanksRed!

    Fornever having had one before I think it turned out pretty good! I get so nervous talking in front of peopletoo! I didn’t pass out or throw up oranything so I think it was a...
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    Vitamin C scares me, I need to do more research...

    Vitamin C scares me, I need to do more research before I ever take it again. We took so many as kids, it worries me. I appreciate all the knowledge that this forum brings, thanks for sharing!
  16. Replies
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    I still have problems logging on, took me several...

    I still have problems logging on, took me several tries tonight.
    I am not a very eloquent speaker either and I have to read and then read again and then once again to make sure my brain knows what I...
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    I think what you are doing is great!! I just...

    I think what you are doing is great!! I just recently heard about the Rare Disease Day. I am just getting our local VF chapter going, our first meeting is the 25th of February. I do not think I...
  18. Thread: Dreams???

    by Kami
    Replies
    63
    Views
    4,481

    Hhmmmm Maybe mine are from the MTX?? I will have...

    Hhmmmm Maybe mine are from the MTX?? I will have to pay attention now as I just went off the pred but am still on the MTX.
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    I go to my hemotologist in May and I am going to...

    I go to my hemotologist in May and I am going to ask for a home tester. They told me about it when they did my IVC filter implant but I was too sick to remember or do anything about it at that time...
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    I was started on 15 mg MTX weekly (tapering pred...

    I was started on 15 mg MTX weekly (tapering pred from 60 to 0) , was on it for about a year and I flared, March of 2011. Increased my MTX to 20 mg MTX did 4 Rituxan in May and started 20 mg Pred.
    ...
  21. Thread: Dreams???

    by Kami
    Replies
    63
    Views
    4,481

    When I was severely B12 deficient I had no dreams...

    When I was severely B12 deficient I had no dreams at all. Since starting B12 they came back but I can't remember them, lol. Since being on Pred they have been pretty busy dreams. Although I can't...
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    Hello! I had 4 every Wednesday in the Month of...

    Hello! I had 4 every Wednesday in the Month of May 2011. My doc wants me to do another round sometime not sure if it will be 2 or 4. I felt run down the day of the infusion and the day after but...
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    I have not experienced that problem, thankfully.

    I have not experienced that problem, thankfully.
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    I take 20mg Mxt on Tuesdays with dinner and I...

    I take 20mg Mxt on Tuesdays with dinner and I take 1 mg folic EVERY day at lunch. All is well. I did find when I was forgetting to take the folic acid that I did get sores in my mouth, I remember...
  25. For some reason my Hemotologist doesn't even want...

    For some reason my Hemotologist doesn't even want me on the Bactrim I had to do the Pentamidine. He said no sulfa with my warfarin.
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