30 March, 2009

Even goddesses get the blues...

Some goddesses are puzzled by this...like me...

I always thought that losing mental capacity, and knowing it, would be the worst disability to face and deal with. It's tough, it's grueling, and it makes you feel like an idiot most of the time, but you learn to live with it. Pain has this wonderful tendency to cut your cognitive abilities by large amounts and your brain functions become all about getting through the next moment or the next required task. If you are old enough to remember skipping records, it's kinda like that...repeating the same groove, over and over and over and then maybe getting beyond it to fall into another one.

Weirdly enough, my family and I have learned to live with this. The hubby and kids finish sentences for me and play 20 questions with where they think my argument was going. They put up with me snapping at them and then realizing I've been a bitch and apologizing. They put up with the days I just can't do much and all the times that plans have to be changed, or mom can't go, or mom has to be so drugged out of her mind to go that she becomes a happy pill popper hyped up to the gills who won't stop talking. I just don't think adding more crap to this is fair.

But then again, I stopped believing life was fair a LONG time ago. Karma really sucks, and I must have done many really dreadful things in other lifetimes...if this is what I deserve in this one, I've really screwed up somewhere.

For some reason, my immune system doesn't much like me. The doctors, as usual, can't seem to figure out what syndrome or disease or whatever it is that is causing things. I was finally told that my thyroid has settled into a disease called Hashimoto's Thryroiditis. Along with the fibromyalgia, and now my uveitus, all of these conditions are linked to an immune system that is attacking various areas of the body, but no one can figure out why. None of these immune disorders have very good tests, and the few tests they can do have all been inconclusive. Go figure. (An upside, at least I now know I don't have syphilis! *gee and did I ever think I did?*)

I mean, the other 3 or 4 things that are going on are physical and people can relate and figure out. I did some ripping of my rotator cuff it looks like, so I'll be seeing an orthopedic specialist for that. I have some cervical spinal degeneration so I'm seeing a PT for that, and the chronic daily debilitating migraines which everyone seems to know how to cure with the snap of their fingers and figures I'm too dumb to have tried just about every cure on the f*cking planet for...(sorry for getting hot, I may NOT have heard about the cure that worked for your brother's, sister's cousin's niece yet, but after 35 years of research, I've tried most of them and it's irritating that people don't give me the benefit of not being an idiot...but then, I know it's human nature to want to help...I really do...I just get frustrated by it all.)

Back to the immune system though...for those of you following along with the story, there will not be a happy ending, this I somehow already figured out. Ya think. ;D

It wasn't explained to me very well, if at all (I really don't remember it!) that the cortisone shots into my eye socket would further damage my eye. I knew that my sight probably would not come totally back to where it was before my immune system decided I didn't need a left eye, and that I would eventually lose more sight, but I thought the cortisone would improve things a great deal more than it has, and on top of that, the cortisone actually is giving me cataracts.

So with every shot I will lose more vision and the world through that eye will become hazier. I'm hating that I've turned into a fricken whiner about it. I thought I could take blindness, and it's only one eye, but I can't see clearly enough to read without a great deal more light nowadays; I'm having trouble seeing the computer screen, I can't paint and illuminate the medieval stuff I want to; I can't take photos that aren't fuzzy, no matter how I adjust the camera. Every time I turn around I discover a new thing that is impacted by my lack of sight in that eye. I make jokes about what mom can't see today to the kids to cover for the fact that I'm scared sh*tless and really don't want to lose any more sight. And, as usual, the eye looks perfectly normal.

I guess that most of us can look forward to cataracts when we're in our 70's or 80's...and nowadays the surgery for them is fairly routine...unless you have the retinal scarring (sneaky eye) that I do. But the hubby looked up the reasons and hows of cataract surgery and now we are both wondering why they are waiting to do it on my eye....so that's my next question for the eye experts at Casey Eye. Why do we have to wait for total blindness to overtake that eye before we put a plastic lens in place of the protein lens that is clouding up? Does the swelling in the back of my eye have to go down first? So that's the question that I'll be asking when I next see them in May.

Oh yeah, to drive at night they suggested I get an eye patch. Driving one eyed is perfectly legal and the patch would help the glaring reflections I get on that side from the oncoming headlights flashing in the cataract. R still isn't buying letting me drive at all though. He says it's to protect me and the other poor fools that might be sharing the road with me...maybe he's right.

from the pirate goddess

2 comments:

Epona said...

Ah I feel so much for you. Your pain, frustration, fear and sorrow are getting to you and I wish I had words to comfort. I, too, have Hashimoto's. Don't let them tell you it's just a thyroid condition. If it was, mine wouldn't have started with kidney failure. It may be the Hashimoto's attacking your eye, as it doesn't care what organ it damages or in what order. But enough advice or opinion. Just know I care, I'm here and I do so wish you moments of peace and joy, and knowing the love that holds your family so strongly together, even in the face of chronic illness. I admire your family and the way you are such a wonderful, loving group.

Unknown said...

Epona- you are such a sweetheart. I couldn't remember if Hashimoto's was what you were dealing with, but this immune system disorder stuff seems to have no rhyme or reason. Aargh! I'm amazed that they even figured out your kidney problem before they stopped working entirely! Any advice or opinion you have on this is welcome...hey, it's a new diagnoses and I haven't had 30+ years of running through the medical treadmill on this one...yet! ;S

And know that there is no one I admire much more for their grace and humor in the face of chronic illness than you. :) At least both mine are teenagers now and can mostly look after themselves! Love you...ttptog

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