Tuesday, July 21, 2009

Waitin' for the meds to kick in...

So many of the dear ones I know online who suffer with neurological conditions such as Chiari Malformation post on message boards or update their blogs in the wee hours of the morning.

Like me, they are up, in pain, waiting for a pill to be absorbed in the bloodstream and carried somehow to the brain and those pain receptors that need numbing, at least for a little while.

I was up at 1:15 am, two hours after I went to bed. My feet were hot and burning and I could not go back to sleep. I got a drink of water and crept into the guest room bed, debating whether to take a 5 mg of oxycodone or not.

I hate taking them in the middle of the night, since I'm allotted only 5 per day and that is never enough to cover the pain that haunts all my hours. I laid down and read some, but knowing that foot and leg pain wasn't going to do anything but intensify, I opted to go back to the kitchen for the oxy.

Back in bed, I finished a great book I've been reading, titled IceBound. This put me 2.5 hours past the time I took the oxy...and back in pain, especially at the back of my head now.

I just got up and took a 500 mg tab of acetomenophen. I know the news says it ruins your liver or kidneys or something. But that is in extra high doses. One or two tabs a day, I don't believe, will send me down the river. Though there are certainly days I'd like to make the trip!

I turned on the desk lamp which allows my eyes to adjust to the glow of the monitor, deciding to type an update here. Everything hurts, everywhere. Hopefully, I'll feel relief soon and head back in to bed, perhaps getting 2 hours of sleep to add to the 2 hours I had earlier and that should be enough.

The neighbor just left home in his log truck, climbing through the gears as he passes my house. He and I have an intimate relationship and he doesn't even know it. I don't even know his name. But I do know that he leaves every morning except Sundays at 3 am and he returns home at 5 pm.

He also starved one of his dogs to death, but that's a different story.

Yesterday, Monday, I had an appointment with my local doc. I put in a request for a motorized scooter. He told me that they are very hard to get approved, and worse so with work comp.

I said, "What about all those ads on TV that guarantee Medicare will pay for it, or the scooter is free?" and he replied, "That's the problem. It's never like that, and people come in with high expectations."

I feel a scooter would be so helpful in large stores. Later today, for example, we are planning to go to our shopping town in Oregon for a grocery run. And a Kmart run. Kmart has scooters there. The grocery store doesn't. And it's a big store. Almost every time there, I have to quit halfway through and go sit in the seats by the pharmacy and let my husband finish the shopping alone.

I suppose that it will take my work comp three years to decide on a scooter for me, since it takes them 3 months to decide on Lidoderm patches. The wheels of indecision turn slow. Oh Lord, don't let a new, national health care plan be worse than this!

I also shared with my small-town doc that I mailed a package to the specialist in Bethesda containing a CD copy of all the imaging I had done in NY in June; a list of my symptoms which takes two pages and the lines are double-spaced; and a 3 page letter of background. An e-friend told him, one night while she was at his hospital with her daughter about to have surgery, about me and my situation, and he encouraged me to contact him. I have done some research on him and like so very much what I read. He definitely is an expert in the craniocervical junction.

And I am back ready for surgery again. With things worsening, I hate to imagine me in ten years, when I'll be 67. I can't imagine I'd be ambulatory. Better to take the horse and do a little "plow reining" to get the show on the road...if I can.

Especially if there is a surgery often done for elderly patients with rheumatoid arthritis, whose spines and ligaments cannot hold up their heads either.

Our raspberry bushes are prolific this year. I pick a large, stainless-steel mixing bowl of red raspberries and some sort of smaller blackberries every day. I freeze them, sticking the baggies of fresh berries into the chest freezer in the shop. I know that all winter, I'll find pleasure in my bowl of raisin bran each morning, adorned with red morsels born of the hot summer days of July.

Well, my head is just too heavy for me to sit here any longer. Not sure if my feet will feel okay when I get back in bed, or if the back of my head will throb as I strive to find a spot on the pillow that works, but I need to get away from this position and give it a try.

God bless!

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