Saturday, August 29, 2009


My pre-op appointment was pretty traumatic.
The doctor didn't even check for allergies. What the hell is that?
He also didn't know what I was coming in for, and was really nasty when I did not know what exactly was being done and every little detail about it. (In my defense, I asked, and was told that I would be informed AT THE PRE-OP)
my eye is still very bloody and gross-looking. It feels all scratchy and I am very stressed out. The appointments on Thursday and Friday were both just very, very bad.
I will elaborate more later. I don't have the strength at the moment, and I have things to do.

Friday, August 28, 2009

Doctor My Eyes....

So, the Avastin injections were scary and painful.
My right eye bled and the blood is still visible. I am still in pain, but it is not too bad, just rather annoying. I have to put antibiotic drops in four times a day through tomorrow.

I was able to see the show on Wednesday, so that was nice. It was not perfect vision, but it was MUCH better than I was expecting. I will take it, gladly.

Yesterday, I met with a Sleep Disorder Fellow. She was nice, but her superior... not so much.
The fellow mentioned that when I was in for the sleep study (which I had to inform her I had already had) the report showed that (besides the apnea) I cried in my sleep. I had no idea. Nobody ever told me that. I told her I wondered if that MIGHT have been an isolated incident, via a PTSD trigger. I remember VERY clearly that night that just as I was finally falling asleep, there was a HUGE trigger factor on a news broadcast and I woke up with a jerk-type motion and then it took me a while to get back to sleep. Maybe when I finally did, that is when it happened? I have no actual idea, I am just speculating.
The superior came in and said that he does want to fit me for a CPAP, but he also pretty much said that he thinks I am crazy and should be calling psych too. He pretty much laughed in my face when I said I wanted to try to stay clear of any anti-depressants that had a COMMON side effect of edema because of this whole situation. So what... I shouldn't be looking out for myself? Whatever, dude. Nice of you to introduce yourself too...

Today, I have a pre-op physical. I am going to have to get there on my own. I am kind of nervous about it. I got to yesterday's appointment on my own just fine, but today's is in an area that is a bit tricky to get to with compromised vision/mobility. Hopefully the assisstance I THINK I have set up is a sure thing.

Sunday, August 23, 2009

Yeah, definitely not good...

So I went to the retina doc on Wednesday and I will be going back this Wednesday and having injections in BOTH of my eyes. If I recall correctly, it is called Avastin and I am not looking forward to it. I was supposed to see a show that I have been looking forward to for 14 years on Wednesday evening... and now, I don't know.
Obviously, my eyes are more important, but this isn't something that is going to be a thing I can "just catch another time" so I don't know.... argh.
Anyway, so then I get to go back 2 days later for a pre-op appointment for my INVASIVE surgery which I will have the following week. (because 3 needles in each eye in one day is not nearly invasive enough...)

Then I get to have the aforementioned invasive surgery and I am scared out of my mind. I will have to go back the following day for a follow-up too. I can't quite wrap my mind around all of this just yet. I really can't.

Tuesday, August 18, 2009

Not good.

On Friday, I was on my way to meet a friend and go on a cruise in the evening. While on the bus on the way in town, I got a HUGE hemorrhage in my left eye and a small one on the right. I knew that ios what they were because it had happened so many times. The doctor wanted me to let him know if anything happened between my last appointment and my next one, which was scheduled for late next week, so I called. I spoke to the retina fellow on-call and was told I would be safe to go on the boat, but to move my appointment to this week. So I moved it to Wednesday.
My body had other plans.
I woke up yestdrday, half blind. I had to keep checking to see if my eyes were really ioen is the best way I can think of it. I called the retina doc's office and was told to go to the ER and have the retina fellow in-call paged. I did this, and was told that I have new hemorrhages in both eyes and that the right one (usually the good eye) was worse and has "streaking" biut this was not really explained to me.
I was told to keep my appointment for Wednesday with my retina doc and that I may have to have invasive surgery on one or both of my eyes. This will be determined tomorrow, I guess.

Today, I went to the kidney doctor and she took more blood. Other than that, it was just basic discussion and my weight has dropped slughtly since the last time I saw her (which was in May)

I have lost about 18lbs since my last trip to the ER (early June) but have been at a standstill for the most part for a couple of months. I am doing the best I can to exercise as much as I can, like I said, and eat a fairly healthy diet when I do eat.

I apologize for the many typos that i am sure are in this entry. My vision is serevely impaired and I do not know if it will get better. I am trying to hard to remain hopeful, but I just keep gettning knocked down. I don't know how long I can keep this up.

Wednesday, August 12, 2009

Yet another pause...

I got a call confirming my appointment for Friday with the diabetes nurse yesterday.
Less than an hour later, I got another call canceling it. I guess someone in her husband's family passed away.
Understandable to take time off, but this was the first appointment I have had in a long time and I have had no answers as we all know.
My weight is pretty steady.

My breathing is getting worse. I can't eat much, and when I get hungry, I get so hungry it seems that I need to eat a lot and I don't know when I should stop.

I have been in so much pain, I am so swollen, and I am drained. Just completely drained. I am doing the best that I can to exercise as much as I can. I walked a few miles on Thursday, about a mile on Friday, the next few days, I don't remember exactly, but I am sure I did something.
Tuesday, I went swimming for nearly 2 hours straight, possibly a little more.

I really wish I had the ability to get somewhere to swim on my own. I mean, not that I don't like company, but the fact is that nothing is accessible by public transit. Someone has to TAKE me somewhere, I can't just go- I have to depend on others. It stinks. If I could afford a gym membership at a place that had a pool, I would totally use it, because I can exercise without injuring myself. Right now, even walking REALLY hurts.

Wednesday, August 5, 2009


So I was informed today that the sleep study revealed that I do stop breathing when I sleep.
I have to wait for a call from a different person in the lab to schedule an appointment to meet with a specialist to discuss sleep patterns and the possibility of a CPAP machine.

Still at a standstill with the weight/swelling. Still in pain. Still dehydrated. Still don't know what is causing all of this. I am glad I have ONE answer... I just wish that it would help with the other stuff.