Worn.

I am so worn out.
I don't even know where to begin.
I have been going non-stop for well over a month now, and mostly it is a case of having my time occupied and me being relatively happy... but then there are the parts that are just... horrible.

My stress level has gone through the roof over the past few days, and it isn't even over anything I have control over, and is actually someone elses' fau;t altogether.

That doesn't mean that the big bang of the stress itself doesn't come down on my head.

Hopefully, I will be able to figure things out soon. Til then, I am just doing my best to make the best of things/keep my chin up and all that jazz.

Grateful that I have castmates around me who are awesome.

Oops?

It seems that the reason my blood sugars were so high (and therefore my A1C took a hike) is that I was given the wrong chart of how much Humalog to take, and therefore was taking an insufficient amount several times a day.
I am on a more accurate scale now, and the sugars are on their way to the right place now. Yay!

I have stayed under 230lbs for a couple of months now. I am happy with that, in that it isn't 265lbs, but very frustrated that I am not losing more, since I don't eat very much, and I exercise a LOT. There is still a lot more edema than there is fat. Like, I am so swollen that I can't put my arms all the way down- they just pop outward and it makes me VERY self-conscious.

I have been taking Turmeric supplements to see if that would help. I don't know yet if it is.

My sleep schedule is still basically non-existent. That bothers me. I basically don't use my CPAP machine because it really seems to make matters much, much worse.

I am at a loss. At the same time, I keep trying. I gave my endocrinologist a form to apply to a program in Maryland that deals with un-diagnosed diseases. It is a long-shot, but I figure it is worth a try. The worst they can do is not accept me, and I'd be no different than I am now. If t hey do accept me, MAYBE I can get some answers. Til then, I will keep searching.

I am supposed to see a Neurologist sometime soon. I should check on when that is...

I'm taking the time for a number of things that weren't important yesterday.

(and I still gooooo....)

Anyway.. so let's see... I called both the kidney doc and the GI doc again on Tuesday morning and finally got a call from the kidney doc the SECOND I was on my way out the door to go to rehearsal.
I spoke to him for a few, got some questions answered, I guess. Still no word from the GI doc. NOt my phone nor by mail. Pretty terrible, if you ask me.

On Monday, I left a voicemail for my endocrinologist because for several weeks, despite not eating much at all, and taking my insulin, I have not been able to get my blood sugar below 300, and usually it's much higher. This is not good. I feel mostly "okay" (for me, anyway) so I don't know what is causing this or how to stop it.

According to my kidney doc, my A1C took a hike- I jumped from 8.5, which was a record low, to 9.8. This scares the living daylights out of me.

My creatinine is 1.2, which apparently means that (at the time the blood was taken, at least) my kidney function is functioning at 70%, which is up from 44% and is an improvement. He looked at the results he could see from the GI doc, and confirmed the focal nodular dysplasia, and said that I don't have Hepatitis (duh) and that my "anemia is fine" the "protein is perfect" and iron tests are negative, which is apparently a good thing. He did note the A1C, as previously mentioned, and that my white count is elevated.. but they didn't call on that, so I don't know if it's "elevated like it usually is" or "elevated and needs to be looked into" Hopefully my endocrinologist calls me back so we can deal with this. I am really sick of being dehydrated 24/7 and I feel like I am swelling again. I have maintained a weight under 230 for a month at least, but I don't seem to be losing any more, which bothers me, since I am not eating all that much and being active and taking all of my meds.

Tomorrow...err... today I have a retina follow up. I have nobody to take me/pick me up, so that will suck, mostly due to the long commute and the fact that I will be even more visually impaired when I get out... and it's supposed to rain a lot and my rain coast seems to not be waterproof anymore.

On a brighter note, this is the first time I have made it to a follow-up retina appointment without an ER trip in the middle. Yay!

Oh look, I am up at 4am!

Big surprise, I know. You're in a state of shock.
I will give you a moment to compose yourself.

No word from any docs, save for a reminder that I see the retina doc on Wednesday.

I've been pushing myself. I have been walking, and doing things and still it seems that I am having some swelling issues. My ankles are more visible than they were a year ago, but really.. this is ridiculous.

I have requested info on getting into an "unknown illnesses" program out of state. I have to get some papers filled out, and it can take a few months to find out of I am in or not, but I figure it is worth a shot.

I am just so sick of it.

Still no word.

No word on the blood work from the kidney doc nor the GI doc.
I have called both clinics and received no call backs.
I am more than slightly irked by this. I called again today, once to GI and twice to kidney.
I also called the diabetes nurse because I need a couple of refills and because when I went to picl up my test strips the other day, I was told that insurance does not cover them. I certainly can't afford to buy them outright, and they were covered before and my insurance hasn't changed, so this makes no sense whatsoever.

In other news, my left eye seems a little better than it was before. I can't see a LOT, but I can see shapes, which is more than I could see when I went into the retina office before. I have a follow-up at the beginning of next month for that.

A longer update.

I didn't get much sleep, as per norm. I spent a good deal of the wee morning hours on the phone with a friend of mine whom I'd been urging to go to the hospital for a while to get some pretty scary symptoms checked out. He finally took my advice, and thankfully, is mostly fine.

I slept for about 4 hours, having some VERY odd dreams in the midst of it.

Woke up to a call from the retina doc's office before 9am to reschedule my follow-up. Tried to get back to sleep for a bit, more dreams. Got up, took meds, showered, dressed, hauled ass to catch the bus.

Went to the dietitian's office, arriving at about 1pm for my 1:40pm appointment. I was taken in early, and praised for losing 16lbs since last I saw her, and for my full-point A1C drop, and, as expected, reprimanded because I have (excuse me, HAD) not tested my blood sugar for a week. I WAS, HOWEVER, HONEST ABOUT IT. I still brought my meter with me, ready to show it.

Truth is, I have been VERY depressed since my oncology appointment on Tuesday. Testing just wasn't a priority, because I have not been eating. I know. I know. Don't lecture me.I couldn't. I was mostly physically incapable of it.

So I got upstairs for my 2:15pm kidney appointment (with the new doctor) at 1:30ish. I told the woman at the front desk that I had another appointment in another building across campus at 4pm, so did she know if he was running on time, etc. She very confidently told me that I should be seen very close to on time. At 3pm, I went up and asked her nicely and quietly to check on things, and also advised her that if they wanted a urine sample, they needed to get on that RIGHT NOW because I wasn't waiting.

She came back about 10 minutes later with a cup and some wipey things. *sigh*

Before I went to the lav, I was told that I was next. When I returned (very shortly) there were 3 people missing, and then 3 more got called in. I asked again what was going on, and noted that I HAD TO LEAVE by 3:30pm. I was told I was next, and I told her she told me that a half an hour ago, which was already 45 minutes after my appointment time. She calls the girl from the back, who proceeds to mention that I am "not listed as being here" Ahem.

At this point, my patience is gone.

I raised my voice and held up the cup I'd been holding and said "You know, if I wasn't fucking here, I wouldn't be able to open this jar of piss and throw it in your fucking face. This lady registered me at 1:30pm. I saw her. I've been here, and you have seen me. You asked me my fucking name an hour ago, if I wasn't on the list then, you should have dealt with it then. Once again, jar of piss... your face... do we have an understanding?" She laughed as if I was joking. I stood up and started removing the paper towel from around the jar. She left.

The nurse (him, I like, he just wasn't around before) came out. He told me that he was working on it and asked for the name of the doc I was seeing and came back to get me into a room a few minutes later. At about 3:30, he brought me back, took my vitals and weight and told me the doc would be right in.

I hear a knock on the door, and a man with full braces and elastics walks in. I am sitting in a chair, with my right leg up on the foot far of the exam table. I am ALL attitude. He smiles, apologizes, and tells me that I should nag him because he "can just talk and talk forever" This actually set my mind at ease a little, because if he can talk, I figure he can explain things, in detail, which I need right now, and also listen. Now, when he heard about the crazy shit that happened with the 100lbs in 3 days thing... he... I think he is the first person EVER who didn't look at me like I had 12 heads, and NOT just because he read my chart beforehand (but, HE READ MY FUCKING CHART!!!!!!!!!!) He actually gave me a name of what it might be. Of course, I don't remember what it was...I plan to call about that tomorrow. Its a start. He did inform me that my kidneys are functioning at less than 50%, but he also said that as long as it doesn't get worse than it is now, I should be fine. He explained that I do have diabetic kidney disease, but I don't JUST have diabetic kidney disease, I have a...non-diabetic one too. He ordered a shit ton of bloodwork, but he gave me the papers, and told me to bring it with me to the other building, see the GI doc FIRST, and that way I'd (hopefully) only get stuck once if GI guy wanted more tests. He told me to come back in 3 months, unless something happens with the bloodwork, in which case he will call me, and (because it came up in discussion about how I keep active) told me to e-mail him if I am in any shows before I see him again, haha! (Turns out that my Awesome Aussie doctor- I think he's Australian, I hope so, because Awesome Aussie is a better nickname than Twatwaffle, is apparently the black sheep of his family. They are all artists and were awestruck when he wanted to be a doctor)

So I go to the GI doc. I am filling out the new patient paperwork when the aide comes out and asks for "MISTER LASTNAME" (I was the ONLY one in the waiting room. I thing I may have caused bleeding in her head with the daggers that shot from my eyes. I didn't say a word, I got up, she apologized, and I laughed and I said "It's not so uncommon, it's just REALLY bad timing" and I laughed, and I think she spent the next 10 minutes apologizing, and I told her "Hey, at least you didn't ask me if I am related to Dr. Lastname!"

I got put in a room, and a short time later, a very old man comes in, and starts basically telling me everything I *don't* have... all of which is misinformation because he didn't look at the paperwork I just spent all that time filling out.

He tries to convince me that I was 12 when I was diagnosed with diabetes, and therefore I do NOT have juvenile onset diabetes. FACT: I was NOT 12 years old in October of 1987, and even if I was, I am still Type I. (and also, this has nothing to do with the reason I am there which was the mass on my liver)

I have told him 4 times that I do NOT smoke, and he asks me if I have a cough from the smoking. *headdesk*

He asks if I have any questions. Finally. I said "Well, I am pretty freaked out by the liver thing..." and he says "What? Why? You should be happy about it!"

*blinkblink* What?! I was under the impression that I have cancer, and that the additional tests I have to have done for it could kill me.

He explains that... lemme find where I wrote this down... "You do not have cancer. We are not going to do a biopsy at this time because thee is absolutely no need. You need to have it re-checked regularly, and by regularly I mean every year or so. If you do 2 years in a row and there is no change, you can go to every three years. You have Focal Nudular Dysplasia. It CAN become cancer, but it is VERY rare. You don't need a follow-up appointment with me unless there is something off with the bloodwork."

Off to the blood lab, where I was the only one there, and yet still had to wait a half an hour to get poked, and then... they took 12 pretty hefty sized viles of blood. At first, the girl drawing me didn't realize that he colleague had set the viles out for her, so there were 24 of them and I nearly fainted before a needle came anywhere near me. (Oh, hi, haven't eaten much....) Finally, I am done, and head for the bus stop, with only FOOD on my mind.

I went and got some food, and then proceeded to rehearsal. (Yes, I was cast in the show I auditioned for 3 hours after being "diagnosed" with cancer.)

OH!! And during rehearsal, I had to scratch my right eye, and and and *bounce* guess what? *bounce* I could see the outline of the accompanist playing the piano with my left eye!!! *bouncebounce*

I am scheduled to see the retina doc during the first week of October. I have a few questions, and am not sure if I might be brought in earlier than that or not, but we shall see (no pun intended).

Well, I wasn't expecting that...

You would think that if you have a big test done and something VERY SERIOUS comes as a result, that a physician would CALL a patient, not wait for their appointment, take them in an HOUR late, and then ask "How are you doing?" and when the response is "Nervous", just say "Yup" confirming that there is a good reason to be so.

Cancer.

I still went to my audition.
I bombed on a song I can sing like its nobody's business.

I'm not done processing this yet.