day 822

Sometimes my head just gets so full of stuff I can't even think straight.

The pain is pretty much the same. A familiar companion now, I wonder if it will ever lessen in severity. I'm pretty much resigning myself to living with it at this level though deep inside I do hope that maybe some day I can find a doctor who will care enough about me as a person to adjust the dosage of my medication so that I can live a little easier and not be so tied to watching every movement, knowing that one too many will put me out of commission for days, if not more.

I'd like to spend time with my grandbabies like I used to, but I can't. I can't tolerate the simple noise that joyful children create as a side effect of the act of being. It hurts. It physically causes me discomfort.

The holiday was nice but I had to ask several times for people to, in a sense, stop enjoying themselves so much because enjoyment naturally leads to sound, and sound hurts.

I wonder if anyone without this kind of pain has any clue how hard it is to live this way.

Probably not.

I wonder if they care.

Most of them - probably not.

They just want to get on with their own lives and happiness and I am in the way.

And that is tough on me.

And I weary of asking people to lower voices and stop sounding like life is so much fun - because for me, it isn't any more, because I cannot stand the sound of enjoying life.

And that is sad.

let me describe this while I can

It's as if someone took a chisel, one of the shorter ones like men keep in a tool box, and flattened the end so it's about as big around as a dime but about 1/2 inch thick; then they took that chisel apparatus, put it on the right side of my face between the far end of my eyebrow and where my hair begins, and tapped on the chisel just hard enough to hurt. Over and over and over and over and over and over and over. For hours and hours.

I can't even stand the lights on the Christmas tree. I had to shut it off. The TV is off.

The tinnitus is loud again, louder than usual.

I just want to close my eyes and sleep away the pain. The problem is, it's always there when I wake up. There's also the issue of the pain that laying on my back aggravates lately with the occipital neuralgia acts up.

I need to be working on Christmas gifts but I can't stand the light or the sound of the machine. I feel horrid. I promised the kids their quilts this year and it looks like that won't be happening again unless I machine quilt them, which I really didn't want to do. If I did, though, I could have them done on time.

I just wish I could have something to take the edge off on days like this, since they turn into weeks more often than not, and with Christmas coming next week that isn't a good thing...

...but what does the pain care?

day 814

The occipital pain has been stronger in the past two days than it usually is. I actually sat yesterday with my eyes closed for a while to make sure it wasn't migraine pain, but I can't feel the throbbing or the feeling of the blood rushing to my brain, and it's concentrated in the back of my head instead of on the right side where the migraines usually occur. It makes for an interesting time trying to sleep because that leaves me one option - my left side. The right side is out of the question, and when the back hurts, then I can't even really go from the left to the back like I can when it's not doing this. Since I don't have anything for breakthrough pain, I can't take anything to help with it. This, again, is one of the things that frustrates me about the pain doc I had for a year - nothing for breakthrough; just suffer with it unless or until it gets bad enough to go to the ER almost an hour away, jolting and jostling on the Missouri roads, to get a shot of Dilaudid and one of Phenergan, and then another hour home.

I am hoping the new doc that I see in January has a better suggestion for me than what I'm doing now. This really stinks. When I have days like these all I can really do is hang around the house, alternating between doing simple non-stressful chores and sleeping. Exercise, one of the things they really push, is out of the question. It hurts just to BE. The thought of the motion and the additional stress it puts on the pain is just too much.

I don't know if I'll get the quilts done for Christmas that I tried to finish last year either. It hurts my head to work on them too long. It's extremely frustrating to have them sitting there, knowing I want to and am capable physically of doing it, but realizing that pushing the pain in my face and head to do that kind of work is only going to make things worse. I don't know...maybe I'll just do it anyway.

I'd like my doc to go through this for a while. I really would. Maybe it would help him see how it really feels and how frustrating it is to not have the choices a person should have to improve the quality of life simply because I also happen to have a psychiatric diagnosis and therefore by implication cannot be as ill as I say I am. The prejudices associated with mental illness make me want to scream.

So much for that. I feel a bit better having gotten that off my chest.

day 811

Okay, so I ended up cancelling again. My head was pounding. I'm going to check out the new doc here who is replacing my old cranky one and if it's not going to work out with her I'll make the appointment with the other guy.

I've been kinda between depressed and feeling driven to do and be and all that junk because of the season and because of the new baby. I'd like to just crash for about a month but it's not going to happen.

Realizing the extent of my borderline personality disorder has been a bit tough on me but at least I see it for what it is and I'm trying to work with it and keep my life somewhat consistent instead of flopping all over the place.

I don't really feel like writing either here or in any one of my other blogs. I'm really lacking that kind of motivation right now. Maybe it's the SADD kicking in again. Then again, maybe not.

I wonder sometimes how I manage to function like I do considering all the crap that I went through as a kid. It's hard to remember a lot of it - I've blocked years and years of my life as part of that psychological protective mechanism process. It's frustrating, though, to think that there are periods of time where I was here, and alive, and being who I am, and I can't recall that time. It must have either been bad, or it would have triggered memories I couldn't handle, so my mind just put them in a box, taped it shut, and stored it on a shelf way, way back in the closet in the corner of my brain.

I know it's for the best, but for how long?

day 802

I really don't feel like going to Columbia today to see that pain doctor. I hate to cancel again, but I think I might put it off till after the first of the year. It takes so much energy to see a new doctor and start all over again with the paperwork and tests and questions and explanations...and after the fiasco with the other doc there, I'm just not sure the extra gas and time is going to be worth my effort.

I'm pretty much at the stage now where I just want to give the new doc at the old pain doc's office a chance first since I know that place and I won't have to go through all that stuff one more time. She may prove to be more humane than the other doctor. If not, I can always look further.

My energy level is pretty low right now and I'm moody and grumpy and I just want to sleep all the time. I'm making myself do things but I'm only doing that so I don't turn into a vegetable.

I hate being sick. I'm tired of being sick.