Thanks for the Love, All Yous Guys!
Thanks for sharing my joy, guys! You've been such good sports sharing my burden over the past year, that it's pretty awesome that you'll get to share my joy, too, if this ends up working.
I've had a really rough week with sinus infection and I'm battling the sleepiness again, since they upped my dose, but knowing that further relief may be just around the corner, makes it easier to deal with it right now. Or something like that. ;/
Appointment With the Neurosurgeon
So, I bet you're on pins-n-needles waiting to find out about my appointment with the neurosurgeon on monday, right? The first bit of news is I've finally got a confirmed diagnosis of my disease, in other words, I have a name for what ails me and it's not migraine! Big shocker there. NOt in the truest sense, anyway. The pain is similar to migraine and cluster headaches, but it isn't those two types of headache. This explains why all the migraine drugs they kept trying on me, didn't work or would only work a tiny bit. I have what's called occipital neuralgia. It's hard to describe without having a model of a cervical spine in front of me, but suffice it to say that if you had no discs in your back, cushioning between your spinal column bones, they'd be scraping and compressing dead against the nerves and nerve roots and endings. Well, this is just like that, only in the neck. During my accident, the cervical spine shifted in such a way that now the bones are crushing down directly around the nerves and constantly rub at them, sending pain signals into my brain. I am giving you a very rough, laymen's language interpretation of what I understood from the doctor's teaching us, ok?
So, along with that damage, I've also got some arthritic swelling in those bones, which closes over that space around the nerves even more. This is why my pain never stops and didn't even get relief until I was put on narcotic pain killers. Nothing else would have worked on it. The problem is that if there was no way to fix this, then in about 5 years I'd need hefty bags amounts of narcotics to get rid of the pain, rather than the amount I'm on now, which helps, but in no way gets rid of the pain completely.
I asked why no one ever told me this, and he said that most doctors and neurologists wouldn't pick up on it because, a) the symptoms are so similar to migraine, except that the pain's chronic, so that's why the doctors always just acted like I was a big baby or was making it up, maybe. I mean, I could say that, to be nice and give them the benefit of the doubt, even though the truth is they're just assholes. The other reason is that unless they specialize in it, they won't think of it. Voila! The reason no one recommended me to the surgeon until now. And, I guess my new pain management doctor picked up on it, because he knows the surgeon personally and refers patients to him, frequently, and he read my medical charts. What a novel idea.
The good news is there is hope that the pain can be taken care of. Now, they can't do anything about the damage that was done. But, they can "burn" the nerve endings, (which is what the bones are scraping on), so that I don't feel anything there for about a year or even two. The bad news is that he can't do that close enough to my occipital bones and nerves, where my pain is at it's worst, because of the high incidance of stroke in that area. It's right next to a major blood vessel. If' you've been reading my blog for awhile, you'll know that I used to get injections in that area and they had to be extremely careful just how they put the needle in, so as not to touch this certain vessel. So, burning the nerves will probably take care of about half the pain that I'm in. Yay! I can deal with that, no problem.
But, there's more!!! (Don't you love it when they say that on infomercials? I love that part. I'll watch the whole infomercial, just to here that part. lol What would happen if we lived our lives like that? waiting to hear: "But there's more!" lol) He's going to do this thing, and I can't tell you what it is, because it's not exactly kosher here in the states, yet, thought they do it all the time in Europe and he does it all the time, where he scrambles some electrons in the occipital area of my head. Now, that freaked me out a little, because I really like my brain. I mean, if you were to ask me my favorite feature of my body, I'd say my brain. That's why this thing has been so devastating to me. Ok, anyway, so the philosophy behind that is pure science fiction. No joke, they even made a movie based on this idea and Ben Affleck was in it, but the name of the movie escapes me at the moment. I'll come back and edit it in later. Anyway, what happens is that it's like blocking a radio transmition or scarmbling a phone call. If the brain can't understand the message, it can't interpret it as pain is what, I think, it boils down too. See, I wasn't as clear about what he was talking about with this.
The final coup de gras will be when he inserts an electrical impulse unit under my skin. He's the first doctor to do this with this brand new one that doesn't have to have it's batteries changed,e ver. I guess you can just recharge the batteries by holding a mouse over the unit, above the skin, while you watch tv for half an hour and it recharges itself.
Between these three, we should be able to just get rid of the pain completely. Each part of the treatment plan will get rid of a little more pain. The tough part, for me, will be waiting for this to happen. It has to be approved by insurance and we do the burning first along with the scrambling, then the tens unit will be installed and actually sewn into my occipital reason, using 8 leads and two electrical units put under my skin, because I have, or, had, an active lifestyle. I'll be able to go back to swimming, jogging, bike riding, hiking, working out aerobically for an hour every day. Everything. The whole shabang. I'll get my life back.
I feel hopeful for the first time in years and really happy that something can be done about the pain, but it also makes me very sad for the migraneurs who can't be helped and who have to be in this kind of pain all the time. There's no sure treatment that will relieve their pain, ever, and I feel sad about that. I may get my life back, or some semblance of it at least, but they never will.
I'm leaving my husband...
...for Sayid, from Lost! lmao! He is so hot! I know he tortures people. So what? He is so freakin' adorable. And did you see those pecks tonight? I think my head's starting to feel better. lol jk I know this has nothing to do with migraines, but this has to do with me and it's my blog, so if I wanna go off-topic I can. (for pictures, click on topic title)
Now, let's try to imagine life with Sayid. Hm. Ok, so, he comes home from work and I'd give him a tiny peck on his lips and say, "Shower off and don't drip blood on the carpets, darling!"
After his shower, he'd come and give me a passionate smooch, holding me in thos muscular, gorgeous brown arms and say, "Were the kids good today?"
And, I'd have to stop and think about how I'm going to answer that. I could tell the truth about how Sayid, jr. decided to disect a frog in his bedroom, using my special tweezers and other cosmetic accssories; or I could tell him how little Abn wanted to play war and "borrowed" daddy's gloc. Hmmm. Course, if I do that, then Sayid, jr. might lose a fingernail or two and Abn might be strung up from the rafters by his thumbs.
So, I lie and say, "They're perfect little angels, darling." Then, I set the table with foods: Tabâ hajah, Lentils, Andalusian Chicken and rice. Yummy! And dinner conversation would go something like this:
"So how was work today, honey?"
"Not so good, I started crying while I was torturing this guy. I lost all credibility with him. It was horrible!"
"Aww, I'm so sorry. Would you like another scoop of lentils?"
Hmm. Might have to work on this fantasy a little. lol I"m sorta rusty. Haven't fantasized about anything in awhile. lol
Next, I have to think of a good time to tell Hubby and how to break the news to him. Hmmm. Any suggestions?
Patience for the Impatient Patient
Well, I found out yesterday that my appointment with the surgeon is going to be just a consultation, not the surgery. After the consult, we'll make an appointment for the surgery. Ugh! Even though I'm dissappointed, I'm kind of relieved, because, as you've probably guessed if you've been reading my blog for any length of time, I'm the kind of person who likes to know as much as I can about something before I get into it. So, even though I'm impatient to see what the results will be like, I'm fine with not rushing blindly into an alteration like this. I just hope I won't have to wait for months before I can get the surgery.
On a more positive note. I've completed the first chapter of my novel. I haven't titled it yet, so for now, I'm going to call it my WIP, (Work In Progress). I am supremely happy with it. It's really hard work, challenges my mind and is frustrating as hell in some ways, but I read it aloud to myself last night, and my husband heard me read a portion of it, too, and I was pretty pleased with the end result, aside from some gramtical cleanup and a couple minor flaws. Hubby said that the portion I read ot him was "hot!". His words. I felt like I'd knocked one outta the park, when he said that. :-) And, he doesn't lie to me when it comes to my writing. There have been times when he's been brutally honest with an emphasis on the brutal and I've wanted to divorce him for a moment, because of what he's said, but when I've thought over his criticism, I've realized that he was right and he keeps me honest as a writer and keeps me from being lazy. Of course, I don't and won't read everything I write to him. He's not that interested in the same subjects as I am about what I write, but the fact that he respects what I do and will be truthful in his critique of it, means alot to me. So, I guess I'll keep him around awhile longer. lol
The higher dose of medication in duragesic patch seems to be working really well. My pain level has gone down dramatically this week, since Tuesday, and I've only used the dilauded once this week. That's nothing short of a miracle. I'm going to try to move around more next week and see how it holds up under that kind of pressure. It would be so wonderful if this meant that I could do a few things around here, like cleaning and even just taking a walk would be a big victory for me.
I don't dare let myself think that I may not be in pain at all after I have this surgery done, because I really couldn't bear the let-down if I was still in alot of pain, but occasionally, in spite of myself, I catch myself thinking, I wonder if I'd be able to go back to work and what kind of work would I do? I certainly can't do the same work that I did before, at least not at first. But, see? This is dangerous, so I need to let my communist militia out of the pen and go around cleaning up these insurgent thoughts in my brain.
Traumatic Memory Pill
A pill to fade traumatic memories ? Interesting. I won't be lining up for them to try it out on me, but it will be exciting when they do actually come up with something workable one day. You can be sure the government will be on it like white on rice! (Well, I mean, they already are, but you know...)
Check it out here:
http://www.cnn.com/2006/HEALTH/01/14/trauma.pill.ap/index.html
Plan B Part Deux
I told you that I'd let you know what I decided my plan b would be, right? Well, the only helpful recommendations you gave me was to read important books, (dude, can't read books, remember? I write about that alot and even wrote that in that particular post, but hey, don't worry about it, because I found a compromise that will make you happy), and try to find a new craft or hobby. Ok, so I have discovered that I can read an e-book if it's on the computer, because I can look straight ahead and don't have ot move my eyes in the same patern as I would if I read a print book. Score! So, I bought a really sweet romance novel, well 2 actually, and have started reading those.
The first one I couldn't put down. It's called A Rush of Light by
Penelope Marzec and it's published by
Awe-Struck books. The second one, I'm working my way through and it's also pretty good. I just didn't realize it was historical fiction/romance when I bought it and I'm not really into the Little House on the Prairie era, but I'm still liking the book and the characters. So, to make that reader happy, I am reading a book. lol Not only that, but I found out that I could get all and any of the classics FOR FREE online. Did you know that? There are a few resources, but the biggest one seems to be
Project Gutenberg. You can download them for free and read all the classics. It's great.
I do have a hobby that I haven't indulged in for years. It's writing. I've always wanted to write a novel, so I've decided to do that. Now, I am working on two novels and the non-fiction book that I've been working on for three years, now. But, the novels are new and I'm really excited about trying my hand at them. Of course, I'd love to get published, but even if I didn't, just knowing that I finished writing a novel, would be rewarding in and of itself. So, the last couple of weeks, I joined some writing groups online and I started my novels. The first one, I've written about two chapters and the second one, I am still putting together the plot, but my characters are fleshed out for it.
My writing here may get a little more sporadic, but I'll still write. I'll probably just cut it down to 2-3 times a week, instead of trying for every day. I am really enjoying the process though. It's been enlightening, interesting, very challenging and engrossing.
So, see, I took your recommendations. I'm reading important books, (no, really, I am), and I found a new hobby/craft, or rather, rediscovered an old one.
Btw: I'm starting to get nervous about my surgery, so keep an eye out for my meltdowns, next week. lol
