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I am so disappointed tonight. In myself. In my body. For something I'm not even sure I really have any control over. But I still feel like I've failed somehow.

I got the results of my urinalysis back tonight (6pm Sunday evening, I love that they post the results online) and as expected, they look...bad. Pretty bad. Kind of downright awful and now I'm really dreading the blood test results (which will probably come back tomorrow). I'm also really dreading my doctors appointment tomorrow, it feels like I've just failed a math test and I have a meeting with the teacher or something.

It's so hard to express just how frustrated and disappointed I am right now. How hard it is to live with this stupid invisible disease. Being sick on the inside and looking fine on the outside makes it so people have no understanding at all on how painful it can be, both mentally and physically. I am crestfallen, I feel like I've failed and now I'm wondering if I will ever be able to get pregnant and have biological children.

We're supposed to go on a trip up to Tahoe with some friends in a couple week and I really don't want to go because I think this is a critical time for my body in terms of healing. I don't think I should be going up into high elevations which strains me during the best of times, and of course there will be a lot of drinking and staying up late and physical exertion. We will probably cancel and it's stupid but my main concern right now is, what will we tell people? People look at me and I seem to be perfectly healthy, because I can be most of the time, it's hard to explain why I have to be so careful without feeling like an invalid.

I don't even know what I'm trying to say right now, I think I just have all this pent up frustration about living with this damn disease and the lack of understanding there is in the general population of what it is and what people with lupus can and can't do.

I've always experienced this fear about telling people because I don't want them to think I am a liability at work (I'm not) or that it affects my career in any way (it doesn't and won't). But then when I'm pushed to do the same things as other people my age (go out, take trips, etc.) I don't know what to say. Because I do have to be so much more careful and aware...

And now I'm just freaked out over this whole trying to have a baby thing. Sigh. I'm trying to see the silver lining in this as being able to focus on adopting our first child rather than getting pregnant with one, but I'm also kind of sick of always having to find the silver lining in shit.

I wish I was a little kid so I could lie on the floor and cry and pound my fists and yell about how unfair this all is. I guess this blog will just have to suffice.

Labels: Baby talk, i don't feel so good, Make Joyce go something something

Comments:

I have said it before and will say it again. God will lead you through this and will provide you strength to deal with your sickness.

Maybe a some time on the floor crying out to God may help you.

Though I don't know any of the details of what you are dealing with. I have fought my own battle with a disease no one understands.

I have been spending some time in the psalms reading and that has been helping me a lot.

Joyce I have been praying for you and Paul.

# posted by  Todd Mogilner : 9:02 PM

 

As always Todd, your words and prayers are a great comfort to me. I'm trying to stay positive but I admit this little bump in the road has set me back a lot in terms accepting of how I feel about all of this. I will probably be writing a lot more about this in the weeks and months coming up since it seems to be back in the forefront of things....I'm really thankful for your prayers, I am praying right now for a supernatural healing! But enough rambling on about me, I hope you are doing well. I need to swing by your blog and catch up on all that is going on =) I hope we can communicate more often!

# posted by  Joyce : 9:47 PM

 

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