Saturday, August 20, 2005

But Then Again, Who Knows?

The doctor's appointment yesterday for TP was a follow up after all of her endoscopies this summer. It was to find out what had caused the biliary duct stricture, and to find out what the future will hold in regards to it occuring again. The doctor said it wasn't due to one of our major concerns, something called primary sclerosing cholangitis - at least, she didn't think it was (but then again, who knows?). She seemed to think it may have been caused by vasculitis, which is an inflammation of a blood vessel's wall - the theory is that the blood vessels in the biliary duct became so inflamed, that it caused a stricture in the duct, causing the bile to back up. It is "probably" related to the lupus, as a lot of lupus patients do develop vasculitis - but in this particular case, they can't prove that it is, indeed, the cause behind it. I mentioned that the other doctor thought it could be the beginning of an autoimmune cholangitis, but that it didn't fit all the classic symptoms - and this doctor just shook her head, and said "yes, it's a possibity - but, who knows - all we can do is monitor this and if her labs indicate that her liver function is going nuts again, then we know what to do - just put in another stent".

TP has never been a classic textbook case - I keep on hearing that from all of the specialists. I also keep on hearing that phrase "but then again, who knows", and I am getting a little tired of it. What am I supposed to do with that? Am I just supposed to shrug my shoulders, and pretend like it doesn't matter? I feel so damned helpless sometimes! I know lupus is an unpredictable and insidious disease, but this cavelier "who knows?" stuff is not making it any easier.

So, I guess I'm not supposed to worry about this. I was told it could happen again, and if it does, it may or may not get worse over time. Or, it may never happen again.

What do I pray for here? All I know is that I want TP to have a "normal" life - not wondering where or how the lupus is going to appear in her body. What do I ask God for - or do I not even ask for anything? I am at a loss as to what to say. I know I am thankful that she is very, very healthy right now. I am grateful that she's able to work not one job, but two, and she delights in being so productive. I am excited that she's going to be a senior this year (okay, not "excited" - perhaps happy, yet kind of sad at the same time). But what happens should the lupus come out of nowhere again?

I guess the old adage "one day at a time" really comes into play in this situation. But, right now, I am at a loss as to how to compartmentalize the "who knows?" into a section of my brain, and just keep it there until the next thing strikes.


At 9:33 PM, Blogger Paul said...

I doubt that grabbing the doctors by the collar and shaking will get you any better idea. You could try.
I know she's happy to have you as her Mom. As happy as you are having her too.
The Big Guy and I have problems. That's no reason I can't wish he help you both. He should. Thanks for telling us about TP.
And DQ, go study.

At 10:09 PM, Blogger My Kid's Mom said...

Yes, I am VERY happy to have her as my kid. I wouldn't trade her or DQ for anything or anyone else. Thanks for dropping by.

At 1:17 AM, Blogger Housewife said...

I know it must be difficult but pray for God's Will to be done and pray for acceptance of God's Will. I know, I know...easier said then done.

I'll be praying for you and your family.

At 9:03 AM, Blogger My Kid's Mom said...

Welcome, Housewife! Thanks for visiting and for your supportive comment. We appreciate the prayers. I have ketp you and yours in our prayers since reading about Michael's death. God's will is so mysterious at times. Acceptance is difficult, but necessary. If anything, my daughter's illness has strengthened my faith and love for the Lord. Without HIm, I wouldn't have made it thus far.

At 10:01 AM, Blogger HeyJules said...

II agree with housewife...pray for His will to be done and then pray for peace of mind, a hopeful heart and a medical staff that don't make us all want to go insane! Oh, and something else I've been finding myself praying for lately...researchers that break the codes to some of these diseases. Pray for them, too.

At 10:01 AM, Blogger HeyJules said...

This comment has been removed by a blog administrator.

At 11:23 PM, Blogger Tyra said...

I can't imagine being in your shoes. Just wanted to tell you that I think you're a great mom.


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