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The one and only
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Discussion Starter · #1 ·
So I have been coming to this site for a few years now… and usually I am talking about my battle with this stupid disease. Well today I am coming here for my sister. She is a member of the site because she was diagnosed with sjogrens a while back. She has the dry eyes, dry mouth, memory loss, joint pain, change in taste, smell, fatigue, etc just a lot of the classic signs for that disease. Well this summer has been pretty bad for the both of us (she was living with me)… She had blood work done a few weeks ago because the rheumy saw some changes in her and she was just feeling not so good physically. Plus she moved out of my house over the weekend (which was bad because she woke up the next morning with swollen hands and lots of pain). So anyways, my family is set to go to a family reunion this weekend and she was supposed to be today but she gets a call from the doc saying that she is in a major LUPUS flare, with kidney involvement and has advised her that flying and the change of attitude could be VERY detrimental he wants to see her ASAP and is trying to avoid hospitalizing her, but its still a possibility once he sees her (this all happened late in the day, she is actually at the rheumy as we speak) so her trip is canceled. I feel so bad for her, she is only 26… we have ALL been looking forward to this mini vacay and seeing family and now we have to leave her behind. She doesn’t want for us to stay behind with her…. And I totally understand where she is coming from. I have had to miss a lot of family, parties that I have planned (the show must go on) and other things because I’ve been in the hospital. But I still feel very bad for her – because I know the feeling.

I am just asking for your prayers for my family. My mother and father have to deal with two of us and this nasty disease, we have another sister in the middle of us… and thankfully she has no signs of anything autoimmune. I was having platelet problems a few weeks ago and my family thought that the disease was going to affect my trip up there,,, we never imagined it would be my little sis (if its not one thing it another).

Thanks for listening… just need to get that out and vent a little bit… I knew that you guys would understand…sorry such a long post... :)
 

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Well that's entirely pants... Fingers crossed your sister won't need the hospital, and her flare can be brought under control quickly.

The silver lining is that you do understand what she's going through, and you know better than to cancel your trip against your sister's wishes. My family, on the other hand, would cancel the whole thing, and it wouldn't even vaguely cross their minds that that would make me feel worse.

Take care :hehe:
 

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Discussion Starter · #3 ·
Thanks Fairy... isn't that the truth... I just got off the phone with her and the rhuemy is saying its definitely SLE.... poor thing... she is off to the hematologist and then to the nephrologists... the rhuemy has put her on 60 mgs of prednisone... maybe its a good thing she moved out... 2 sisters living together on prednisone probably isnt a good thing :rotfl:.

I will always look for the silver lining.... its the only thing that keeps me going with this disease!!!! :)
 

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(((Specialk))))

Sorry that your sis has sle too.:( I hope she doesn't get put in the hospital. Hopefully things will start to settle when she gets to taking that pred.

Now the 2 of you will know exactly what each other is going threw. My brother and I both have sle. When we talk we defiantly know how the other one is feeling.

Sending hugs and prayers your way.
Lyn
 

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I'll be thinking and praying for your sister Kasha. I'm glad they figured out that it is now something different and didn't just assume it was the "same old same old" sort of thing. In other words, I'm glad it appears that her doctors are looking after her properly and she will be in good hands while you are gone.

Do your best to enjoy your family reunion... and take lots of pictures for your sister to enjoy when you get back :)
 

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Oh dear :(

Yes this disease is hateful and dratted and many other things that would get me censored!!!

Huge hugs to you and your sister - It's funny how we find it harder to see someone else suffer than suffer ourselves.

:grouphug2:

Katharine
 

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Dear Kasha-
I am new to this disease and website. Recently diagnosed withy Lupus and MCTD. I, too want to tell you how sorry I am to hear about your sister. I hope the prednisone helps her as much as it has helped me. I have been on 40mg since last November, it took awhile to get dignosed as I go to clinics and it is hard to see the rheumatologist. Please tell your sister I hope she is feeling better soon, it sounds like the doctors are getting right on top of everything.
Rose
 

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Ugh! I am so sorry!! Your poor parents must be beside themselves. I know my parents lose a lot of sleep over me, and my siblings are all much older and chugging along just fine... Although I do have a sister with Raynaud's, but that appears to be it. I think if two of us were sick, my dad would agonize over it.

I hope your sister gets to feeling better soon!! Awful to watch someone you love suffer, ESPECIALLY when you understand the extent of their suffering.

Best,
Elizabeth
 

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(((((((((((Kasha))))))))) ((((((((((((Kasha's sister)))))))))))))

Life can be really cruel sometimes, I'm sorry to hear she is so unwell. Good news is they are onto it and hopefully will get it under control very quickly.

Give her our love and hugs and tell her we hope she will join us when she feels up to it.

As Maia said take lotsa pics so she feels like she was there anyway.

:grhug:

love
Lily
 

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I am so sorry for you and your family. It is hard on you all. I hope the rheumy manages to get your sisters flare under control. Sending hugs and get well wishes to your sister and best wishes to you and your family.

Take care

Deb x
 

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Discussion Starter · #13 ·
Thank you all so much for your love and support. I haven't been able to get on the site much lately between work being so busy and the fatigue just taking over... Had a wonderful time at my family reunion. My sister had her kidney biopsy done last Thursday and then had to go to the emergency room later on that night because she was having problems with her throat and swallowing... they suspect her thyroid... THE WOLF is all I could say... it keeps mimicking so many things with her its making my whole family crazy. Anyways, this week has been much better for her. She is a 2nd grade teacher and school starts next week. My son is with her today and tomorrow helping her set up her classroom. He loves his auntie and will do anything to help her out. :blush:

Thanks again for all of your prayers love and and support. We HAVE to beat this disease it hurts my heart knowing there are so many of us out there suffering.

Love, hugs and all that mushy stuff!:lol:
 

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I am so sorry that you sister is having such a bad time, you too. It is such a right royal pain the in rear this disease and how it to some degree can dictate our lives, I am new to SLE/APS/PN myself (April) but have lived with the symptoms for a while now.

In some respects, having a sibling that knows what you are going through I guess could be construed as a little bonus, though I know both of you wish each other did not have this darn disease in common, I am sorry that your sister has to miss out on the vacation.

I truly hope things settle down for both of you.
 

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Hi,
I just wanted to add my best wishe to you and your sister. I really hope your siter can avoid going in to hospital and picks up soon.

I hate this disease too!!!!


Good Luck..

Take Care

Cassie :)
 
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