Thursday, October 28, 2010


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.

Tuesday, October 26, 2010


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...

Tuesday, October 5, 2010

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!

Sunday, October 3, 2010

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.