View Full Version : daughters diagnosis...

01-16-2010, 06:30 PM
So my daughter finally got to see my rheumy..3 month wait..had a very good visit..poss Lup or Sjogrens..she has had 2 unexplained bouts of pancreatitis and was blown off at the hospital because first attack was age 20!! they pegged her for a "drinker'....not! The doc was quite annoyed when told this. He said auto immune pancreatitis can go with either Lup or Sjogrens..had a slew of blood work..will wait and see but either way he is treating for AI.I feel soo guilty for passing this on.She is not sleeping normally/severe fatigue/swollen glands/various rashes/severe dry skin on hands...dry, bloodshot eyes.Her eyes are light blue so when they are blood shot it is extreme looking...people think that she is high on weed when she looks like this.She gets really embarrassed.It is killing me to see her suffer too.:unsure:

01-16-2010, 07:58 PM
Hi Andrea,

I am so sorry, that your daughter has this aweful illness as well.
But honey, you have got to know, IT IS NOT YOUR FAULT. Don't feel guilty, please. I am sure your daughter doesn't think that.
My younger daughter, she is 30, has alot of pain in her fingers, hands and wrists, along with a few other problems, that make me think of lupus. She does not have any insurance at the moment, so she can't get checked out right now.

So, shake that guilty feeling right off. You hear?


01-16-2010, 11:09 PM
Don't blame yourself! Just be glad that because of your diagnosis, your daughter was able to get hers diagnosed a lot faster. I think that the older folks in my mother's family had it right - they called arthritis "the family curse".

01-17-2010, 04:45 AM

Lupus is an entity of it's own, almost with a mind of it's own. You didn't ask for this crappy disease, and you didn't pass it on. It passed itself on. You have NOTHING to feel guilty about. Those words are not mine. They are my mother's words turned around and spoken by me after a heart to heart talk where I asked her if she somehow felt guilty about my Lupus. She has no guilt, because she did nothing wrong, and neither have you. And as a son, do I feel like my mother somehow bears responsibility for my disease? Absolutely NOT! I would be willing to bet your daughter feels the same way.

You didn't do this to your daughter, Lupus did it.

PS- I have light blue eyes too, and I get looks from people when my eyes are irritated and bloodshot. I need a tee-shirt that says "No, I'm not smoking anything!".

01-17-2010, 07:32 AM
Oh Andrea, I can understand why you would be so distressed about your daughter. My son has Raynaud's and I have always blamed myself for "giving" it to him. But, even with Raynaud's and being hearing impaired he has a good life.

Don't beat yourself up. We all know, as does your daughter, that you would have done anything to ensure she didn't get the autoimmune gene . The best gift you can give her at this point is love, understanding and support-which you are clearly doing.

Keep us posted!

01-17-2010, 04:40 PM
thank you all so much for your kind words..I know you are right and I am sure she does not blame me. My mom had Rheumatoid arthritis and I never once thought this was her "fault" It is so hard to watch her go thru a really rough period right now. She is going to school and works in Ruby Tuesday's as a server/bartender at times. She is applying to nursing school in the spring..we joke that someone has to take care of us!!! She does not have a boyfriend and worries already about being able to have children.And..if she meets someone, how to tell them. I try to calm her by telling her I think I had the Lup in my 20's but had no Dx til now! I went on to have 2 beautiful healthy( so I thought) girls. I now have to worry about my 11 yr old. I mentioned it to the pediatrician and she was totally like "don't worry". My 11 yr old has had tendonitis in her feet/heels already and the doc kind of acted like, just because you have an issue doesn't mean she does..but i worry because I know the signs. The rheumy was interested when my older daughter(with the dx) said she had tendonitis in HS in more than one place...he knew right away that was not "normal". Okay that is my rant for the day....
Rob..special thanks..it's nice to have the male perspective :)

01-17-2010, 08:20 PM
I've complained about tendonitis to docs for years, but they always just brush it off. I've got it right now in both elbows. Like your daughter, I had it as a teen also. So, is it an indicator of future AI issues in that joint? I wonder how we can convince our docs to actually pay attention to it?

01-18-2010, 10:47 AM
Andrea, I'm so sorry your daughter was treated like that. Absolutely horrendous! I'm curious what we can do about treatment like that from doctors...isn't there someone we can complain to that will at least slap these "healers" on the wrist for it?

I worry about my kids too. Even the little problems make me wonder if the autoimmune thing was passed on.

Keep us posted. I hope and pray she gets to feeling better quickly.

01-18-2010, 02:43 PM
I agree with what the others said but am sorry to hear that your daughter has joined our little "club" of AI sufferers. I think Rob pretty much said it when he said you didn't pass it on, it passed itself on. I also think she is gonna be one heck of a nurse and be able to relate to her patients better than most. Did you go to a doc in NYC or in NJ?
I thought was interesting about the tendinitous connection. I suffered from tendonitis a lot as a teen but never really thought about it since especially now since I am told my pain is usually related to AI issues. My wrists still kill me and are the first thing I want adjusted when I go to the chiropractor but I never put that connection together before. Funny b/c I just googled tendonitis and autoimmune disease and TONS of stuff comes up. Thank you for making me aware of this connection.

01-18-2010, 03:14 PM
It is very easy to say but when your child suffers it is 10 times more the pain you feel, that is obvious to have guilty feeling either you say you gave to him or it got passed on.