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.

I guess I should updte.

I had my surgery on my left eye on 12.30.09.
The doc used a different type of laser than the other ones had been, explaining that it was going to give the ability to get more pin-pointed areas.
It was way more intense, it hurt like hell, but I got through it.
I wound up having unexpected oral surgery a week later (1.5.10) because I woke up choking on a filling and a piece of my tooth, I would assume. It couldn't be saved, so I lost a molar. It took a very long time to stop bleeding, and it still hurts a bit. I go back on Tuesday to have the stitches removed and hand over my partials so that they can add the now-missing tooth to it. :(

I had an appointment with the diabetes nurse today. She said that although we aren't exactly where we want to be, that I am going a great job at keeping track of stuff, doing the right thing, and whatnot. She said that 50% of my bloodsugars are where we want them to be, which is MUCH better than they used to be.

Today, a urinalysis was submitted, and blood drawn to text electrolytes, lipids, magnesium, A1C, thyroid and basic blood count.

I hear that my echo-cardiogram shows that whatever is causing this edema is NOT heart failure. A small comfort, that. Still don't know what it IS. I mean, we know I have kidney disease, but I was told that it COULDN'T cause the level of edema I have. I can't catch a break.

Today, at my nurse appointment, my left eye started acting a little funky. By the time I was done with the lab tests, it was really taking a toll on my line of vision. I went to the ER at the hospital my retina doc is at, and saw the fellow. I was informed that there was no new bleeding (good) and that this was scar tissue from the surgeries and it just moved (not great) and I'd just kind of have to learn to "deal with it" or something. Well, doing the best I can- it isn't easy, but I am trying to stay positive at least a little bit.

I am so worn out. So tired. I need answers, not more walls to climb.

Quickly...

Surgery scheduled for 12/30... pretty much starting off the year as I began it, on that front.
Swelling again, which is very painful and makes mobility of any sort quite difficult and painful.
I am very nervous about all of this, and recently found a photo of myself from 2 months before this all began and can't get over it. I looked so good- I don't mean that in a cocky sort of way, but rather just that I thought, at that point, that I was horrid looking, and now... I look like hell and feel like hell and seeing me look that good is just baffling and brings tears to my eyes.
I really wish someone would give me a diagnosis and a treatment.
I am out of strength and will.

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.

Still sick.

Today, I have SLIGHTLY less pain in my throat, depending on the moment. Both of my ears still hurt a lot, and it is still difficult/painful to swallow.
I have been short of breath, and coughing a lot.
I have been drinking a lot of fluids, as I was instructed. In fact, the ONLY thing I have had today is 2 pints of chicken broth with mini croutons, two small shortbread cookies, and water.
The cough is sometimes wheezy, sometimes dry and hacking, and this evening there has been a LOT of thick, sticky, opaque white sputum- sometimes with traces of blood. When it isn't thick and sticky, it is frothy/bubbly.
My ankles are even more swollen than usual, as are the rest of my feet.
Also, yesterday, I had smoked salmon & cream cheese on a bagel for dinner, and my urine smells like smoked salmon now... and I have had tons of broth, water, and I pee a lot.
I would think it would be out of my system by now.. but I have never had this happen, and it is really bizarre.
My entire body aches. It seems to just keep getting worse. I don't know what to do.

Also...

My breathing is getting worse by the minute. I need sleep.

My ears are doing this weird thing between extreme pain and numbness from the inside out.

My throat hurts more and more and I am having variations between a dry, hacking, painful cough and bringing up mucus and blood. It hurts so much to swallow.

I have spots in my eyes again. My neck, back and shoulders hurt more than I think quite possibly EVER. I am freezing on my hands, and the rest of my feels hot.

I can't find my thermometer.

I can't breathe.

I can't go back to the hospital even though they told me to if exactly this sort of thing happened.

I am in so much pain, and I am so scared.

...

I was diagnosed with kidney disease on Thursday.

I had seen it mentioned in passing before, but this was to-my-face confirmation.

Lovely.

Don't really have any details yet. I am supposed to see the kidney doc ASAP, and go to endocrine dept every 2 weeks.

On Saturday, I was on my feet for a very long time and went from being hot inside to getting stuck in a snowstorm with not very winter-y clothing for a couple of hours. I swelled up about 5lbs that night.

I woke up VERY sick on Sunday and went to the ER. I couldn't speak much, both ears hurt, I threw up 3 times, yellow sputum with chunks of blood, neck, back, shoulder & head pain... the works. They did a chest x-ray and took some blood, gave me IV fluids, and sent me home with a prescription for Tamiflu & Tessalon Perles. The Tessalon Perles were not covered and cost nearly thirty dollars. (plus three for the Tamiflu)

They don't seem to be working.

I went back to the ER today. Well, I started at urgent care and they sent me to register and since I couldn't talk at ALL, I was taken by wheelchair "STAT" to the ER... where I waited for about an hour to be seen- and all they did was take my vitals, do a strep test, and tell me to "grin & bear it unless it gets worse" which is why I went in in the first place...

My breathing is so bad. I get winded drinking water. I know.. that sounds really weird. I don't even know another way to describe it.