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Saturday, 07 November 2009

Losing.

Thank you all for the nice comments. You all really made me smile when I woke up this morning.

I'm just in a bad place.
I lost another ten pounds. I was so happy that I gained weight about a week and a half ago, now it's gone and then some.

I didn't realize that my endocrinologist was running tests for some progressive, fatal diseases.
I've tried to stay oh-so-positive about whatever it is.
That it sucks, but when they find it everything will go back to normal!
But now I'm scared that won't be the case.

And I just can't do anything about it.
I get to wait.
Lose more weight.
Get anxious.
Get scared.
I'm not ready to be in this place. I'm young, I'm a newlywed, I've got a slew of animals that should be around for the next 15 years and really need their mom. I want to have kids, or adopt kids. I want to travel.
I want to live.

Thinking about it isn't doing me good, I know.
But I can't help it.
Can I just ask for good vibes and prayers?

Because that's what I need right now.

Friday, 06 November 2009

More and more.

So I talked to my endocrinologist today.
She was not surprised at all that I had stones - actually, she thinks that I've had them the whole time I've been sick. For some reason my bloodwork won't show it, but I'm basically perma-dehydrated. Even though I have a liter bottle of water I drink out of constantly.
But all that dehydration means...you guessed it! Kidney stones!

I passed the blocked one, thankfully. Decent sized, nothing special. Not too bad. Once the nausea subsided it didn't matter anymore. Still passing them, though! Now that I know what they look like I'm seeing them all the time. Ugh.

I'm not clotting well, either. Came home from my blood re-draw and the needle entry site was STILL bleeding, even after 45 minutes of pressure and bandage. Thankfully it's stopped.

Still nauseous, still dealing with the same old pain.
Waiting for a change, though. I'm so ready to be better.
Just really tired now.
So I'm going to take a nap!
This is a post about pee and my kidneys.

So if you're easily grossed out, feel free to skip it!

EDIT.
Fuck. I think I now have a lodged stone or something. I've gone from bad to worse in a short period of time. Horrible nausea. The pain is there but by itself I'd be fine, but combined with all my other pains I'm just not handling it very well. Goddamnit. Going to look for a urologist 24 hour line, hoping to hear that it's fine to go to bed and deal with this in the morning.

So, I had to do a 24 hour urine collection.
Basically, they give you this white plastic thing to stick in your toilet to collect the urine (they always call it a "hat") and pour it into this big jug with a preservative. Urine combined with this preservative smells SO BAD. Oh my gosh. So bad.

Well, I learned something.
KIDNEY STONES.
My urine looks basically just like it has since I've been sick, dark yellow and vaguely cloudy. But it turns out, at least today and yesterday, I've been passing kidney stones. Every single time I've gone to the bathroom (which is A LOT).
They aren't huge. Just tiny, gravelly black stones. Didn't hurt much, either. I was very confused as to what they were until I verified it with photos from reputable kidney info sites. Had no idea kidney stones could be black.

But I'm confused.
I thought kidney stones were supposed to be quite painful?
I've been having what I assumed to be kidney stone pain for about a week. It was annoying, for sure, but compared to everything else? No problem at all. So I didn't pay much attention to it until I saw the stones waiting for me.

Tomorrow I get to take my jug o' pee back to the endocrinologist, so I'll ask about it then. Also, I have to get MORE blood drawn, because apparently the lab contaminated some of my specimen. So a few day delay on the test results, since they won't be able to run the test until Tuesday now.

BUT, there could be a positive sign.
Kidney stones are a side effect of hyperparathyroidism. New doc is testing for this already.
Hyperparathyroidism is basically overactive parathyroid glands. It's SO extremely treatable. They have a new surgery for it too, that takes less than 20 minutes and is very minimally invasive.
It could also be secondary hyperthyroidism, which occurs when there is a problem in the small intestine that causes your body to improperly absorb calcium and vitamin D.

Either way, it will be good. Primary would mean YAY, we can solve this no problem! Secondary would mean hey, the problem is in your small intestine! Get in there!

So, tomorrow will be a long day. I have to get up crazy early to go to my allergist appointment. They're going to run tests for all allergies, and also for immunodeficiencies. I'm not convinced it's allergy related, but as my endo said, it's good to have a full panel of tests to take with me to Cleveland if it comes to that.
After that, I have to go across town and get Ben's paycheck and deposit it so I can pay our utilities and whatnot.
Then, I get to go across town again to the endocrinologist for urine jug drop-off and more blood draws.

By then, I will be above and beyond BEAT. And it sucks, because I cannot drive while taking painkillers. Ugh. I mean, technically I COULD, but they make me very unsure of myself while driving and I've noticed my vision and depth perception is worse. So I'll be grinning and bearing it for a few hours. Eek.

But if anyone has any experience with kidney stones, let me know! I know they're pretty common, but I can't imagine it's common to keep passing them so frequently within such a short period. Hmm.

Wednesday, 04 November 2009

Long day!

Whew! I am so exhausted.

So.
I had my appointment with my endocrinologist today.
LOVE her. Love her office staff, too.

She sat down and talked with me for a while about everything. She seems very interested in my case and would like to diagnose it, but if she can't, she wants to make sure I have a whole slew of rule-out tests before I go to Cleveland to make it easier for them.
She didn't immediately think Addison's, but we are going to rule it out. Instead of the ACTH stimulation test, she took a "random" cortisol and ACTH test - the initial amounts will tell her whether or not there is an adrenal problem and if the stim test needs to be done.
She is also testing for parathyroid problems and a pheochromocytoma (tumor on the adrenal gland).

Her guess, however, is porphyria.
She said a few months ago a woman my age came in with very similar symptoms, the same run-around story, and seemingly normal tests - she said she thought back to medical school and came up with porphyria, tested her, and that's what it was. So she ran blood tests for porphyrins and I'm doing a 24 hour urine collection test. FUN. Basically, I pee in this plastic hat-shaped thing and pour it into a giant jug. So annoying, but I'll do anything for answers!

But she wants to wait a week, until she has all the test results from each and every thing she ran (they took SO MUCH BLOOD! Along with the cortisol, ACTH, and porphyrin, she ran a million other blood panels, just to cover all the bases) so she can see all the results in front of her and try to piece it together from there.

Super nice lady, totally taking a chance on me because she doesn't believe it's an endocrine problem, but is still interested. Also, they took a partial payment today and are going to try to work it out with my insurance company! Score!

I liked her immediately because of these things she said:
"You are almost definitely a zebra. So no one's going to be looking for whatever you have." - I knew it!
"Your bloodwork appears to be abnormally normal, which indicates that there IS something wrong." - Someone agrees with my theory!
"I don't think it's endocrine, but I HOPE I'm wrong! Everything endocrine is treatable. That's why I picked this field." - A doctor who WANTS to help people?!?! Shocking!!

SO, no answers. But all in all, a very productive day.

And now, I'm completely exhausted. I've been even more tired than usual lately. So I'm off to attempt to fall asleep.

Oh one last thing, I got a SWEET cane today. I will post pictures eventually. I'm also praying the dog doesn't eat it. She really likes to chew wood. But it helps SO much with my walking. I still look goofy, but it makes it so much more comfortable and I hope it will help me regain my leg strength.