Tuesday, December 9, 2008

The color of pain and beauty

According to the American Chronic Pain Association website, I am "non-functioning". I agree.

Is this blog entry a cry for help? Probably.

I'm scared, and that might be worse than being in pain. Hell, I can stand a little or even a lot of pain. But, from reading various articles on line, I am bewildered by the lack of care I am getting, though there are so many people without appropriate care that I shouldn't have a scrap of bewilderment in me.

I have areas of complete numbness in addition to pain. This sounds bizarre, but I can stick a fork into my right foot and not feel a thing. There are other places where I am totally numb, too, but I'm not going to sit here sticking sharp objects into my skin to check them out.

According to what I have just read on line, I have at least three conditions that call for an immediate consultation with a neurologist. Yet, I don't have a doctor's appointment for 13 days, and I know that this appointment is only to arrange for a referral to another doctor. Just knowing this is frightening to me. I'm living one hour at a time, in essence, and there are a lot of hours until the 22nd of December.

Pain renders me stupid. I have no idea what to do. I can see that my physical inactivity is not good for me, but there are so many movements that cause such excruciating pain that I really can't motivate myself to get up off of this sofa and away from my heating pads.

By the way, the judgment of "non-functioning" was the "Quality of Life" assessment. I don't agree that I'm a ZERO on quality of life, but by their standards, I am.

I have nothing further to say (noted later: fat chance of that). I promised there'd be no more diary-like entries. Okay, I'm nearly desperate, so I broke my word. If there's anyone out there with any suggestions, I'll take them. Please don't suggest that I consider euthenasia.

I wanted to find a contemporary artist's work to grace the top of this post. I found an interesting site called the Pain Exhibit. It would not allow me to copy any of the work.

It's snowing outside and is quite beautiful. I watched the birds for a while. The juncos, which were written about so well (as per usual) on Turn Outward yesterday, were a lovely sight in the snow, as they always are. The dark gray of these birds is a magnificent color. It could easily be described as black, but it is not. I find this color quite rich. I note as I look around the room I am in, that I've painted the trim the very same color. This gray is the color of impending storms, slate, dusk, dust, and the tip of my cat's tail. Maybe I'll just post a square of gray. It is also the color of my mood, if you remove the beauty. I am moving in and out of the black hole of despair. The juncos, on the other hand, even if they are dark gray, are the opposite of despair, though who knows what goes on in their little brains. They are plumped up today, looking much bigger than they are. The temperature may have risen to a whopping 18 degrees from the -6 of last night, but the wind is blowing. It amazes me that the birds can survive in this. I saw some goldfinches, which I do not remember ever seeing at this time of year. I just flashed on these little birds wearing tiny down jackets, but hey, they are covered in down, now that I think of it. Duh.

Image note: Cy Twombly Unititled #19 Sorry, I don't know the year. Always loved what I think of his "blackboard paintings". Don't know why. Analysis is hopeless today.


jmcleod76 said...

Suggestions? how about calling your doctor's office and giving them the "what for"? Or going back to the ER? Or ... I'm not good at this ... sorry. :o(

BitterGrace said...

Are you scared because you think you might be in immediate danger--as in, suffering some kind of neurological crisis, like a stroke? Or are you scared because things keep getting worse and you don't know where this is headed?

If you think the ER visit missed something, there's no reason not to go back and demand more attention. Sometimes you have to. I do know, though, from my mother's experience, that numbness happens a lot in people with chronic pain syndromes. She often had large areas of numbness. I realize that's not really helpful information, but at least it's one small counter to the fear.

Pain doesn't seem to be rendering you stupid at all. Your observation of the juncos is pretty brilliant. I wish I knew some practical advice that might give you some relief until the 22nd. I've never been in your exact situation, but I have been very ill, and I found the most comforting thing I could do was just to surrender to it for a while. I would stop thinking about how to fix it, or what might be coming, and just be, to the extent I could manage that. It made things bearable when I thought I couldn't take it anymore.

Julie H. Rose said...

1. Jaime, I just wrote you a long e-mail, but no, I wrote it to "no-response@blosspot". Just as well!
I'm no good at this, either, though I've had lots of practice.
2. No, I don't think I've had a stroke. It isn't an emergency in that sense.
3. Surrender, well, that helps. But I'm not living much. No schoolwork=more time before I can find a new job. I can't even imagine working. Thinking about the future today is NOT a good idea. Yes, "scared because things keep getting worse. . .don't know where this is headed" is about right.
4. Just now, for example, I got up and walked from one room to another. The amount of pain, even though I am well medicated (and about to run out of said mediation), upon sitting down again, was stunning, in the literal sense. The kind of pain that takes one's breath away and blots out the world for a moment.
This obviates the absurdity of my thinking I can possibly concentrate on my schoolwork, or anything else. I don't know why I seem to be able to write somewhat decently. It seems the only thing I can do.
What # am I up to, lol?
THANK YOU, to the both of you. I need support. My real-life world has gotten quite small over the last few years due to numerous factors.
Another thing that frightens me is that a good friend of mine who also suffered from chronic pain and illness died some years ago after making a call saying "I think I need to go to the ER. I'll wait until the morning and see how I feel then." Didn't make it. And I also miss her terribly. She'd have me laughing right now, I'm sure. Perhaps I should watch a comedy of some sort.

TMC said...


I don't know what else to do. Were I there I'd probably speed you to a city whose ER has a neurologist. :( But I'm here.

Please don't stick forks in your feet. I'm sure there's lovely artwork there and we needn't add insult to injury.

Anonymous said...

Oh, Julie, you're breaking my heart.
You need to get on the phone and demand another appointment, to explain just how bad your situation is. If you can't do it for obvious reasons,(you're barely functioning) please get Dick to do it. Don't take no for an answer, do whatever it takes, throw a fit for God's sakes!!! I don't usually resort to such methods but in a real pinch they work.

Julie H. Rose said...

Thank you, all. Maybe I shouldn't have posted this entry.I got tears in my eyes, Nika, hearing that reading this is "breaking your heart." I don't want to cause anyone else any pain!
I am not planning on sticking a fork in my foot again. I was just testing to see if I really was that numb (and I was). Yes, I need a neurologist, amongst other things. Nika, I've tried the pitching a fit thing. That got me the 22nd appt. I asked Dick to call on my behalf and received a phone call saying they would not speak to him because I hadn't signed a release form, like that makes any sense: I'm not even their patient yet!
I understand today why some people snap and go shoot someone at some place of bureaucracy. Don't worry, folks, that's not going to happen. I don't own a gun and I wouldn't do such a thing, but I can sure see why folks resort to such measures in utter frustration.

Thank you all for your caring. Please don't worry.

And I don't have any tattoos on my feet. They wear terribly. See? I can think about other stuff!

Do you think I shouldn't have posted what I did?

TMC said...

The fact that you wrote it and posted it says that you should have posted it. :)

Anonymous said...

Holy crap, you did throw a fit and it got you appointment in two weeks?!
I don't know, maybe southern people are better equipped for "pitching fits", maybe we need to come up there and give you a demo on throwing a fit that works:)
All joking aside, I think you need to get to the ER that has a neurologist. How far away are you from a larger city that would have that?

Anonymous said...

I'm reading The Godfather and right about now I'm thinking that in this situation, that's who I'd call:(
This healthcare system doesn't work

Julie H. Rose said...

Ah, Nika, Maine has a serious shortage of physicians. SERIOUS. I believe that's true in all rural areas of this country. I waited over four months to get on a WAITING LIST for a doc, then I waited who knows how long for them to decide whether they'd take me as a patient and was rejected.

Northern Yankees (as opposed to New Yorkers and folks from Massachusetts) do not "pitch fits". I think that's a south expression, in fact. Stoicism is the name of the game up here.

Please hear me when I say that your caring words helped. Today, all I can do is just hang with this. Not a day for pitching fits or any real-life drama.

So, again, please do not worry!

Anonymous said...

I know, shame on me, I'm not big on stoicism.
OK, how about going to an alternative medicine guy while you're waiting for that appointment?

Julie H. Rose said...

Nika, no shame on you!

Right now, I'm doing what I can. Again, please don't worry! I feel guilt easily!

Maybe I should sniff some perfume. I'm not kidding. Shoo! You, too! Go put on your favorite scent.

Sometimes that's all we can do. Though not everyone likes perfume. But there's other things like that.

Watch birds. Notice something lovely. What other choice is there?

Ah. More lessons to be learned. . .

I am not in immediate danger. My monkey mind was telling me I was. I suppose it was good I posted about this, because it prompted a response and forcing myself to CHILL OUT.

Anonymous said...

Yes, maam. I will go put some lovely scent on, you do the same. And watch a Woody Allen comedy maybe. They always make me laugh.