Answers? You don't need no stinking answers!

That seems to be what everyone is telling me these days.
Since May 9, 2008 I have been dealing with this on a daily basis, and not one single answer.
Today, I saw the kidney doc, and got a whole bunch of nothing.
I mean, I was diagnosed with kidney disease, and now they can't even tell me what stage I am in? How screwy does that sound to anyone else, because it sounds really damn screwy to me.

Let's backtrack for a sec.
~On 5.9.08, I weighed 165lbs, possibly 170lbs, due to the broken toes on both feet.
~Later in the day on 5.9.08, I weighed 200lbs, was breathing funny, and had no ankles.
~Was told by the hospital it was in my head, given an Ativan and sent home.
~Went to 2nd hospital on 5.11.08 and was given oxygen and told that since I am "not dying right now, we can't help you" and sent home.
~Hospitalized on 1.20.09 with a hugh fever, vomiting, shaking, the works. Inpatient for a week, not allowed to eat or drink and losing all matter of fluids in all manner of ways, yet still swelled up 15 more lbs overnight and nobody cared.
~Echos have been normal
~Leg US have been normal
~Stress test was normal
~MRI revealed benign tumor on my liver, and was ordered off of birth control in 7/08.
~Random episodes of swelling do not seem to be in correlation with any specific event/food/drink and have gotten me to 263lbs max.
~Meds being switched constantly, including today.

Med list:
Lantus insulin
Humalog insulin
Metolazone 2.5mg
Bumex 2mg (starting tomorrow or whenever I can pick it up- this is replacing the 80mg/Lasix)
Levoxyl 100mcg
Diovan 80mg (my BP doesn't tend to be all that high, this is for kidney protection, but now they are talking about how I should be on a higher dose, but I STARTED on a higher does and almost fainted straight away)
Zyrtect 10mg
Vitamin D 800mg/daily & 50,000mg/weekly
Omega 3 Fish Oil which is for cholesterol, but it is not covered, so I don't know how long I will be able to take it if I can't afford it. I have been DEATHLY allergic to every "medicinal" cholesterol med I have tried, so the nurse wrote for this. Insurance will pay $300/month for something that will kill me, but they won't pay $10/month for something that could very well help me. Go figure.
As needed: Proventil, Ranitadine, Flonase
Unsure: Topamax- was on this for years, taken off of it for a medical study I was in. Am done with the study and unsure as to weather or not I should go back on it or not. Kidney doc refused to say, have left message with my PCP.

Recent test results (rec'd 1.8.10):
Chemistries
Na 139
K 4.9
Cl 101
co2 28.1
Ca 9.3
Mg 2.2
PO4 4.5

Kidney tests: "Your kidney function is stable. Creatinine has improved since last check."

Glucose: "Your blood sugar is stable."

Liver tests
Protein 6.7
Alb 3.9
AST 16
ALT 20
ALP 153
T Bili 0.2
D Bili 0.1

Cholesterol "Slightly better than last time, except triglycerides, but this is not a fasting and this affects the results."
Cholesterol total 245
Bad Cholesterol (LDL) 143
Good Cholesterol (HDL) 51
Triglycerides 256

Thyroid Tests: "Your thyroid tests are normal."
TSH 1.67

So yeah, that's about it. I don't know what all of the tests/results mean, but I don't get answers when I ask. I have been told by my kidney doc that she has no other ideas, no other tests, no suggestions of another sort of specialist to seek out answers from.

I asked about natural suggestions and was told only that they are dangerous. (Right, so like, I have low potassium and I eat a banana and it will kill me? Bananas are natural and contain potassium. Please explain to me how this will hurt me? All I wanted was maybe a list of food that might AIDE in the getting rid of fluids...)

I am so lost. Please make it stop. I am begging, if any random person who reads this happens to know someone, some way who can help, I would be eternally grateful.

It has been a long couple of weeks.

Retina appointment on 12/16.
Improved 3 lines on the right and 2 lines on the left.
This is an improvement back toward my ORIGINAL crappy vision, not toward 20/20 or anything, but hey, progress is progress, right?
The bad news is that I do need more surgery on the left eye. Soon. "Before it starts bleeding again" sort of thing.
Also, the loss of peripheral vision is sort of a trade-off to keeping/fixing my central vision. It will not come back. That saying about how "you don't know what you've got til its gone" is so very true. I had no idea how useful it actually was. I mean.. I know its useful, but like... I don't know how to word it, do you know what I mean??

The next day.. I had 3 appointments right in a row: Nutritionist, Endocrinologist, and Echo-cardiogram. Was a full day. Pretty positive in most regards. I mean, the issues are still there, but we are working toward trying to figure out what is going on, get my appointments co-ordinated and such, and maybe get me working toward an insulin pump.

There is a LOT more to write, regarding more tests and more trips to the hospital, but I am still fighting off this bug, so I am going to stop for now and try to get some sleep.

I guess I should do a basic round-up.

On a somewhat unrelated note, I fell down some stairs this weekend.
Went to the hospital via ambulance when ibuprofen didn't help.
As I expected, nothing was broken, but I sprained my wrist and knee. I was given immobilizers for both as well as a cane.
Kind of hard to get around with them, and not entirely sure that they are helping. I am in pain, but trying to push through. I have not filled the prescriptions for pain medicine yet. I hate taking extra pills... but damn, this all hurts.
What I could really use is a decent massage. Heck, I could use any massage at this point.

So I have been on the new diuretic since Saturday. It is called Torsemide. No longer on the Lasix.
So the current med list is as follows:

Lantus ~ 50 units in the morning
Humalog~ 12-18 units with meals
Diovan~ 80mg
Levoxyl~ 100mcg (can't remember if I mentioned that my endocrinologist upped that last month or so...)
Zyrtec~ 10mg
Torsemide~ 20mg
Vitamin D~ 2/400 unit tabs

Study medication, which may or may not be a low-dose of Cymbalta (I am off of the Topamax temporarily for the study... and also that gastroparesis med)

No prescription:
Vitamin B Complex+C~ 100mg
Cinnamon~ 500mg

I really don't know if the CPAP machine is working. I ordered a new mask over a week ago now and it still isn't here, so I am using the one that bothers me quite a bit, and nobody has bothered to return my calls about that.

I have had the flu shot and the H1N1 shot. I was given Azithromicin last week when I was feeling like crazp, and after they had been telling me for 3 weeks to take Sudafed, which I did, and it didn't help.

I swelled up last week to the point where my legs where tight, shiny, and immobile. (along with the rest of me...)

I am so sick of going to doctor after doctor, after doctor and getting NOWHERE. No answers. Okay, if you don't know, how about you keep looking til you DO know? What do these people get paid for? "Oh, your electrolytes look normal and all" Okay, so what else could it be?
If my kidney function is good, then its not, then it is.. how about we investigate further?

Are we forgetting a few months ago when the allergist refused to do the tests? Outright refused? What if this is all a huge allergic reaction? But to what? I don't only swell up in the house. I have been swollen for 18 months now. It makes me sick to look at myself.

I am a good person, but people don't look at that. They look at the fact that no matter how damn actuve I am (and I am NOT a sit-around, lazy person. I am a here, theer , and everywhere person) the swelling holds me back and makes me look like a giant fat blob. I am carrying 100lbs of fluid around in me, and I can feel it, and it makes it hard to move, and it makes everything hurt all the time.

I am scared out of my mind, and I just want to be back to size 14-going-on-12-and-losing again.
I miss being somewhat decent looking. I miss being happy. I miss being able to kneel and bend and stretch and touch my toes and all that stuff that normal-ish people can do.