Wednesday, August 25, 2010

So basically, I have permission to blame my father for everything.

It isn't quite that simple, really... but being assured that this isn't MY fault was a good thing at the time. Yeah.

So I went to the retina doc today, a follow-up to my ER visit on the 17th, where I found out I was "bleeding again" (see previous entry)
When I got there, I went to see the nurse, when called in, which is routine- vision check, pressure check, drug-list check, all that fun stuff.
First comes the right eye. Pretty good, about the same as before- nothing special.
Then, I cover my right eye to test the left.
Not I- can't- see- the- letters- but- I- can- see- the- white- square- they- are- on... just NOTHING. Not a single thing. I see the spots inside my eye, and I see grey-white fog.
She got a board with letters on it and held it closer to my face.
Waved her hands.
I saw a TINY bit of movement when her hand was maybe 6 inches from my face.
I burst into hysterics. I couldn't help it.
The resident, when I saw her, said "Umm, I can't see in there. There's too much blood. Like, a lot I can't see anything. Its all blood." Which, of course, did not calm me down. I lamented about how upset my mother is going to be, I am a burden again. Still. More. Again. Burden. She's going to kill me. The resident told me, flat out, "You can not blame yourself for this. This is NOT your fault. You could not do anything to prevent this, really, and you did NOT do anything to cause this. It isn't your fault, it is genetics. Blame the one who gave you the diabetes."

That did help, a little. Sort of.
My doc came in, and basically said the same thing- he couldn't see anything, and was really shocked that this is happening in so drastic a matter so soon after surgery.
He sent me for an immediate ultrasound. This was the only way we could tell if the retina had detached or not.
The retina is still intact, at this point. This is good.
The bad thing is that I basically have to wait-and-see (or not see, as the case may be)...
I go back in a month, barring any more disasters, and if things are not better, I get an Avastin injection, followed by laser, if the Avastin works.
I also got a call (automated) from the Hematology office AT 7PM saying that I have an appointment at the beginning of next week at the asscrack of dawn. I can't possibly get there. The buses don't start running that early. I called, and of course got the answering service, and told them to leave a message because I STILL haven't heard from anyone about my "abnormal" ultrasound. I was given quite the attitude and told I should call during business hours. I told the gal that I have done that 5 times and gone in in person twice and got NOTHING, so to leave a message for them to call. She paged, and the DOC told me to call during business hours.
At that point, I told the lady "Okay, but please make a note on my account that I have called many times and NEED to talk to someone soon. You can tell them I am being a bitch. Really. Do it. I give you permission to call me every name in the book- JUST MAKE HER CALL!" Here's hoping she calls in the morning or something.

After all of that, I went and toured a gym. I have a week's free pass, starting on Monday. After that, it is $100 a month, so there is no way I can afford that. Here's hoping I can at least learn some stuff during my week!
I also went to check out some live music with a friend, which was a very last-minute thing, but most definitely welcome. Good music, good people, good times. Yay.

My weight... eh. I don't know. It has dropped a little. Not as much as I would like, but its a start. I am under 230. Just barely, but I feel more mobile, and just hope that the weight stays off and keeps shrinking. I don't mind being big, but a balloon is a whole different story.

Saturday, August 21, 2010

Well, not so much now...

I had the ultrasound. There is something on my liver. I require further testing, and the hematologist STILL has not gotten in touch with me to tell me what is actually going on.
I went into the office in person to ask for a call, and I have called. NOTHING. I am not happy about this.

I wound up in the ER at the place I had my surgery the other day. Ears & throat killing me, and lots of black spots in my left eye along with a headache behind my left eye. Turns out I am bleeding again in the left eye. I have to see the retina specialist on Wednesday afternoon.

I should probably write more, but it is almost 5am and I haven't slept yet. I might want to try that soon.

Thursday, August 5, 2010

Still moving along..

I have not been sleeping much. This isn't really "news", but at the same time it is getting worse, so I am a bit concerned. I am in a lot of pain.
Yesterday I took m y last dose of the steroid drop I was being tapered off of for my eye, and I still have not heard from the retina doc, and I am supposed to see him before the end of next week. It is annoying to say the very least.
I did fairly well, physically on Tuesday, I think it was.. I don't really remember. There was one day this week that I did a lot of walking, and didn't get too winded, so that is good.
I remain as active as possible, but I might want to think of actually sitting down when I am not on the stage, because man, does my back hurt. Everything hurts, but yeah.
Anyway, I think I like the Symlin.
I don't like the way the 2 antibiotics I am on make me feel, but I am dealing with it as best I can.
I am thoroughly exhausted of being a human water balloon.
My self-esteem is the lowest it has been in ages. I wish I could change that.
I have an ultrasound next week, and I am nervous as all get-out about it.
This hematologist... she seems really good, and explains things, which is great... but I still have that little voice inside of my head that reminds me that it was a hematologist who found the tumor on my liver in the first place, and if I am being scanned because it may well not be benign anymore.. well, that's just really scary.
I am trying to stay positive, I really am.
I am just so sick of being sick.

Monday, August 2, 2010

Can't sleep.

I can't sleep. I'm watching the Sir Paul McCartney/White HouseNGershwin Award thing on PBS. It is pretty awesome.

I had to go to the ER at the place I had surgery again on Saturday, because I had extreme pain and flashes of light. Basically, the stitches are poking through and causing pain, and there is not much I can so besides keep using the ointment and hope it feels better. It hurts to even move my eye.

Before I went to the ER, I had a regular appointment with my PCP. Had to do the urine again because they didn't actually send the culture to her from the lab for some reason. She said her GUESS about the continued abdominal pain is diverticulitis, and prescribed cipro (which we have to see if I am resistant or not to...) and flagyl. Thing is, that after 11 years of being my PCP, this was her very last day at the place I've been going to see her. I am supposed to check in with her in a few days to let her know if the antibiotics made the pain go away. I have her e-mail address for that. She had recommended a colleague of hers to be my new PCP, whom she thinks will be a good match for me. I told her I was willing to give it a try.

Time will tell.

Man, I need sleep. It is almost 5:30am.