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Jun. 10th, 2006 08:15 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
violachicOkay, I've been out of the world long enough that its probably only fair that I come give some kind of update or excuses to those whom I've not been entirely fair in keeping, well, updated.
I've been extremely anti-social lately. For those of you who know me well, you know this is quite out of character. Okay, yes, before I got sick, my job ate my life, but at least you know I wanted to be social.
So lets just say that I'd rather have my wisdom teeth removed again than make an LJ post right now, but I also know I've been ignoring a whole lot of people, and that can't go on.
I'm also tired of making negative posts, but that's just how I feel.
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subdermalglow and I were talking earlier in the week when I was hurting and crying and whining and bitching. We agreed that the word "angst" has gotten a bad reputation. Its okay to feel angsty from time to time, no matter how old you are. I've always preferred Sturm und Drang instead, anyway. But here I am, with my angst, although not the kind where you have to staple your hand to your forehead.
Okay, rambling introduction over. Here's my report.
Two weeks ago yesterday (which I think was Friday, but I may or may not be right) I finally had an appointment with a specialist. A "rehab" doctor, my internist kept calling him, although I wasn't sure exactly what that meant, vis-a-vis my situation. Turns out that means he does ostiopathic kind of stuff- what a chiropractor would do if a chiropractor were properly trained. Anyway. So he actually spend almost two hours in the room with us (pheret1 was along for the ride, to take notes, and to bully cantankerous receptionists), which I've never experienced in my life with a medical professional. He poked and prodded, he made me walk, bend, twist- "does that reproduce the pain?" he'd ask, and I'd scream "YES!". Or I'd just make one of those noises that doesn't actually sound like "jesus on a pogo stick that HURTS!" but you know that's what they're trying to say.
His current diagnosis and working theory is that I have a rib that has popped completely out of its joint near the spine. Some of you already know this from the post Marta made when she got home that day. The symptoms and pain actually do overlap a great deal with the "Slipping rib syndrom" we were working with, but there are some differences that I don't rememeber. It can be popped back in, but its a laborous process, and may have to be done several times before it behaves and stays in place again.
In order to finish ruling things out, and make sure there's nothing going on inside my body that has been missed, he put me in for a few more tests. One week ago yesterday (again, also Friday, I think), I went in. They did another whole panel of blood work that apparently hadn't been done in the hospital- they took, like, six vials! Then another chest x-ray, with the sweetest technician ever who gave me a copy of the x-rays without my asking to. Then, a chest CT scan. Originally, the doctor told me he wanted me to go have an MRI, but I categorically refused. He said, no big deal, a CT scan would show the same thing. Before he starts pounding and popping stuff back in, we need to make sure there's no bone degeneration going on, or slipped disc or anything.
But then he said to me some scary stuff, stuff that I know isn't true in my case, but got to me anyway. He said, very nochalontly, that sometimes cancers can cause bodies to do these kinds of things. He then hurried to tell me that he doubts that's a factor for me, I'm far to healthy otherwise, and if cancer was the case it would have shown up in other symptoms before then. So he's just covering his ass. Which I'm glad he is. It just really, really shook me to hear that. Having the concept enter your head, especially when nobody is really sure of what is going on inside your body yet, is very disorienting.
Okay, so its been a week since the tests, and nobody has called me to tell me that anything looks weird or life-threatening or anything. So now I just wait out another week and a half for the next visit. In which, presumably, he starts trying to pop my bones back together. Lets just hope he played with Erector sets as a kid.
In the meantime, the doctor is slowly decreasing the Neurontin (I use the brand name because its shorter than "Gabapentin", and I'm more likely to spell it right) to see if that helps the brain cloudy thingy going on. He told me to decrease it a total of 300 mgs a week, so I'm down to 1800 a day starting tomorrow. I also told him that I really don't like Cymbalta, it makes my brain manic, and doesn't do a whole lot for the pain. I'm supposed to stay on that till the next visit, because he doesn't want me coming off both meds at the same time. He said the muscle twitches could certainly be caused by either medication, but more likely Cymbalta. At this time, two weeks later, I'll also say that for a medication that was originally designed to be an antidepressant, it really doesn't do shit in my body.
I was also prescribed a sleeping medication, as the doctor decided I wasn't getting deep enough into the sleep cycle. I found this ironic, as I often spend anywhere from twelve to sixteen hours a day sleeping. Except that I -do- wake when pain meds wake up, so having something that makes me sleep for at least eight hours solid is nice.
But the general gist of it is that I've also dumped myself into a pretty significant depression. For instance, as I write this, I'm having lots of nice, fun, exciting conversations with my housemates, but you couldn't pay me enough to actually get me -out- of the house right now. Unless it involves buying me food. I don't want to make phone calls. I don't want to take phone calls. I don't want advice about how to manage my pain, or how to look forward to when I'm well, or whatever. I feel like that makes me a HUGE bitch and a bad friend, but I just can't be motivated to do anything else. I have constant pain still, and I'm tired of having to answer the question "how are you?" or "are you okay?" because there's always the short answer ("okay" or "I guess"), and the long answer which is "I suck", and all the reasons why.
And as I sit here, I also read in my email inbox all the things that come from CPT. I'm still included in the staff emails, especially where they talk about the working retreat that is coming up. One of those emails had, on the bottom, a list of four of us who "probably won't be joining" the retreat for personal reasons. Jim is home safe, and writing, and doing interviews, and we can get along with our commmittee work. Or can we?
I'm also getting really sick of feeling like I'm putting people out, or some kind of burden or special project. My friends have been so incredibly generous, but at some point I have to stop asking people to do everything for me. I've also acquired two new housemates, who are really cool people, but I barely know them, and they can't be expected to just come in and take care of me. I mean, I can't cook, I can't do grocery shopping, I can't clean. Hell, I barely get up and out of my room. They're not only taking on extra responsibility of those things I can't, but then there's the whole idea of fetching and carrying and reaching for those things I can't do that I'm asking them to do.
I want to go out and take the bus and the train, and go to the office, and have meetings, and not go out for sushi withpolyfrog, and see my sister and bro-in-law, and their zoo.
And I LOVELOVELOVELOVE our new house, and I think the five of us will be really good housemates. But its too foreign right now. Its -not- my room yet, I still don't know where everything is. I'm having to make a change during a time when its all I can do to make change for a dollar. I don't know what to do with all of that. How can I make it my space? Do I care?
That's the multimillion dollar question right now- do I care?
I've been extremely anti-social lately. For those of you who know me well, you know this is quite out of character. Okay, yes, before I got sick, my job ate my life, but at least you know I wanted to be social.
So lets just say that I'd rather have my wisdom teeth removed again than make an LJ post right now, but I also know I've been ignoring a whole lot of people, and that can't go on.
I'm also tired of making negative posts, but that's just how I feel.
subdermalglow and I were talking earlier in the week when I was hurting and crying and whining and bitching. We agreed that the word "angst" has gotten a bad reputation. Its okay to feel angsty from time to time, no matter how old you are. I've always preferred Sturm und Drang instead, anyway. But here I am, with my angst, although not the kind where you have to staple your hand to your forehead.Okay, rambling introduction over. Here's my report.
Two weeks ago yesterday (which I think was Friday, but I may or may not be right) I finally had an appointment with a specialist. A "rehab" doctor, my internist kept calling him, although I wasn't sure exactly what that meant, vis-a-vis my situation. Turns out that means he does ostiopathic kind of stuff- what a chiropractor would do if a chiropractor were properly trained. Anyway. So he actually spend almost two hours in the room with us (
pheret1 was along for the ride, to take notes, and to bully cantankerous receptionists), which I've never experienced in my life with a medical professional. He poked and prodded, he made me walk, bend, twist- "does that reproduce the pain?" he'd ask, and I'd scream "YES!". Or I'd just make one of those noises that doesn't actually sound like "jesus on a pogo stick that HURTS!" but you know that's what they're trying to say.His current diagnosis and working theory is that I have a rib that has popped completely out of its joint near the spine. Some of you already know this from the post Marta made when she got home that day. The symptoms and pain actually do overlap a great deal with the "Slipping rib syndrom" we were working with, but there are some differences that I don't rememeber. It can be popped back in, but its a laborous process, and may have to be done several times before it behaves and stays in place again.
In order to finish ruling things out, and make sure there's nothing going on inside my body that has been missed, he put me in for a few more tests. One week ago yesterday (again, also Friday, I think), I went in. They did another whole panel of blood work that apparently hadn't been done in the hospital- they took, like, six vials! Then another chest x-ray, with the sweetest technician ever who gave me a copy of the x-rays without my asking to. Then, a chest CT scan. Originally, the doctor told me he wanted me to go have an MRI, but I categorically refused. He said, no big deal, a CT scan would show the same thing. Before he starts pounding and popping stuff back in, we need to make sure there's no bone degeneration going on, or slipped disc or anything.
But then he said to me some scary stuff, stuff that I know isn't true in my case, but got to me anyway. He said, very nochalontly, that sometimes cancers can cause bodies to do these kinds of things. He then hurried to tell me that he doubts that's a factor for me, I'm far to healthy otherwise, and if cancer was the case it would have shown up in other symptoms before then. So he's just covering his ass. Which I'm glad he is. It just really, really shook me to hear that. Having the concept enter your head, especially when nobody is really sure of what is going on inside your body yet, is very disorienting.
Okay, so its been a week since the tests, and nobody has called me to tell me that anything looks weird or life-threatening or anything. So now I just wait out another week and a half for the next visit. In which, presumably, he starts trying to pop my bones back together. Lets just hope he played with Erector sets as a kid.
In the meantime, the doctor is slowly decreasing the Neurontin (I use the brand name because its shorter than "Gabapentin", and I'm more likely to spell it right) to see if that helps the brain cloudy thingy going on. He told me to decrease it a total of 300 mgs a week, so I'm down to 1800 a day starting tomorrow. I also told him that I really don't like Cymbalta, it makes my brain manic, and doesn't do a whole lot for the pain. I'm supposed to stay on that till the next visit, because he doesn't want me coming off both meds at the same time. He said the muscle twitches could certainly be caused by either medication, but more likely Cymbalta. At this time, two weeks later, I'll also say that for a medication that was originally designed to be an antidepressant, it really doesn't do shit in my body.
I was also prescribed a sleeping medication, as the doctor decided I wasn't getting deep enough into the sleep cycle. I found this ironic, as I often spend anywhere from twelve to sixteen hours a day sleeping. Except that I -do- wake when pain meds wake up, so having something that makes me sleep for at least eight hours solid is nice.
But the general gist of it is that I've also dumped myself into a pretty significant depression. For instance, as I write this, I'm having lots of nice, fun, exciting conversations with my housemates, but you couldn't pay me enough to actually get me -out- of the house right now. Unless it involves buying me food. I don't want to make phone calls. I don't want to take phone calls. I don't want advice about how to manage my pain, or how to look forward to when I'm well, or whatever. I feel like that makes me a HUGE bitch and a bad friend, but I just can't be motivated to do anything else. I have constant pain still, and I'm tired of having to answer the question "how are you?" or "are you okay?" because there's always the short answer ("okay" or "I guess"), and the long answer which is "I suck", and all the reasons why.
And as I sit here, I also read in my email inbox all the things that come from CPT. I'm still included in the staff emails, especially where they talk about the working retreat that is coming up. One of those emails had, on the bottom, a list of four of us who "probably won't be joining" the retreat for personal reasons. Jim is home safe, and writing, and doing interviews, and we can get along with our commmittee work. Or can we?
I'm also getting really sick of feeling like I'm putting people out, or some kind of burden or special project. My friends have been so incredibly generous, but at some point I have to stop asking people to do everything for me. I've also acquired two new housemates, who are really cool people, but I barely know them, and they can't be expected to just come in and take care of me. I mean, I can't cook, I can't do grocery shopping, I can't clean. Hell, I barely get up and out of my room. They're not only taking on extra responsibility of those things I can't, but then there's the whole idea of fetching and carrying and reaching for those things I can't do that I'm asking them to do.
I want to go out and take the bus and the train, and go to the office, and have meetings, and not go out for sushi with
polyfrog, and see my sister and bro-in-law, and their zoo. And I LOVELOVELOVELOVE our new house, and I think the five of us will be really good housemates. But its too foreign right now. Its -not- my room yet, I still don't know where everything is. I'm having to make a change during a time when its all I can do to make change for a dollar. I don't know what to do with all of that. How can I make it my space? Do I care?
That's the multimillion dollar question right now- do I care?
![[identity profile]](https://www.dreamwidth.org/img/silk/identity/openid.png){kind=small}
no subject
Date: 2006-06-11 03:15 am (UTC)no subject
Date: 2006-06-11 03:33 am (UTC)thank you
Date: 2006-06-11 03:40 am (UTC)I've been thinking of you.
I won't bug you, but I'm around if you need me. Even if you just want me to do your grocery shopping for you. You are not a burden. not to me.
no subject
Date: 2006-06-11 07:57 am (UTC)I also understand not wanting to begin every conversation with a detailed discussion of your own health. (And that's why god made LJ, is it not?!?) And not wanting to go out, etc. No need to apologize, either, as chronic pain is definitely a mind-altering experience.
I don't remember for certain, but I think Cymbalta made me a bit manic (racing thoughts only), too--and did nothing for the depression. Medicine: NOT an exact science.
no subject
Date: 2006-06-11 03:12 pm (UTC)no subject
Date: 2006-06-11 04:03 pm (UTC)no subject
Date: 2006-06-11 04:05 pm (UTC)no subject
Date: 2006-06-11 04:59 pm (UTC)no subject
Date: 2006-06-11 11:20 pm (UTC)Hang in there.... I know all too well the feeling of not answering the phone, making calls, or wanting to leave the house. I don't feel depressed but I know that it is not "normal" behavior either. Know that I and many others are thinking of you.
no subject
Date: 2006-06-12 12:57 am (UTC)and if there's anything i can do to help you make your room "your room" let me know.i know you were talking about painting the trim...if you need help picking out colours or even doing the actual painting i'm down. i really like decorating {i think it comes from when i worked in a furniture store}.
no subject
Date: 2006-06-12 01:18 am (UTC)I always preferred Sturm und Drang, too...
Date: 2006-06-12 01:56 am (UTC)Bonnie
no subject
Date: 2006-06-12 03:23 pm (UTC)Hang in there, Amy.
no subject
Date: 2006-06-12 11:06 pm (UTC)I barely know them, and they can't be expected to just come in and take care of me.
Actually, we can (if only we knew how!)... and I apologize if I haven't been more forthright in offering my help. I wish I knew how to feel like I was entitled to having other people help me, because I am, and so are you.
no subject
Date: 2006-06-13 01:15 am (UTC)no subject
Date: 2006-06-13 01:44 am (UTC)no subject
Date: 2006-06-13 01:52 am (UTC)no subject
Date: 2006-06-14 02:13 pm (UTC)BTW, need anything in the super jumbo size from Costco?
no subject
Date: 2006-06-14 03:44 pm (UTC)