Sunday, June 29, 2008
PS: Who Knew?
On a totally unrelated note, who knew feather pillows stunk so badly? Had to throw out the one I bought for The Boy a couple weeks ago. It smelled like something the dog had crapped on - repeatedly. Blech!
One Week Down, X to Go
Almost one week ago today, I started the Rebif injections. So far I've done three. I was right - this is not the most fun thing I've ever done. That being said...
I must be brutally honest here. While I would prefer not to be doing this at all, the manufacturers really have made this as "painless" as possible. There is nothing to mix; the syringes come pre-filled. The need is ultra-fine (29mm), much smaller than the needle used for flue shots, and I don't think that is particularly painful. Banish thoughts of jabbing yourself and pushing the plunger down. All you do is cock the auto-injector, drop in the syringe, yank off the needle cap (this part occasionally doesn't work so well, but you can get the cap off manually if necessary), swab some alcohol, position the injector, push the button. A tiny prick and 10 seconds later, you're done. And actually, you don't really need to wait 10 seconds; when a series of black lines shows up in the injector window, the syringe is empty. No fuss, no muss. Blot the dot of blood, take the syringe out of the injector, throw it in the sharps container, go to bed.
Three doses in, I haven't noticed any side effects. I had achy knee joints the first two nights, but I have no idea if that was because of the meds or because, well, my knees are twice as old as the rest of me and ache in damp weather. Regardless, two Tylenol killed the pain enough for me to sleep like a rock. The regimen builds up the dosage slowly (8 mcg for 2 weeks, 22 mcg for 2 weeks, then 44 mcg) to minimize effects, but so far, so good.
And the syringes came with a sharps container. Now I just need to find out the rules on how to get rid of it.
So all in all, I'm thinking if you absolutely have to do this, this would be the preferred method. Now if I could just get the friggin' cap remover to work, I'd be golden.
Oh, and the kids? Well, that concern evaporated. I told The Girl a few days before the meds showed up. I had to make some phone calls in front of her, and I didn't want her to freak out about me talking about needles and injections. She took it pretty well and said as long as I wasn't going to panic, she wouldn't. Smart kid.
Of course, the following Monday night when the nurse showed up to do the injection training, both kids crowded around the dining room table. "Whatcha doing, Mama? Can I watch? Can I see?" It was kind of like a freak show at the circus. For the sake of my concentration, I sent them back to Webkinz World. Sheesh. Who knew watching me give test injections to an orange could be so fascinating?
Oh yeah, and my bp after all this was 100/66 and resting pulse 74, so clearly I was neither stressed at the time, nor am I at risk of falling over dead from hypertension.
There was also a moment of morbid humor. The first couple times, the needle was bent when I removed the syringe. However, the syringe was empty and there was no liquid on my skin or the floor, so I concluded it had successfully been injected. In musing over this, I remarked that at least I hadn't wasted $4,000. At The Hubby's blank look, I explained each dose was about $2,000. After a moment, he said, "Jeez, babe, the wheelchair would be cheaper." I was not amused. My boss was not amused. My friend at work, who admittedly has a rather black sense of humor, thought it was hilarious. Perhaps I just needed to look at it in retrospect, he said. Been almost a week; still not that funny.
Now for the irritating part. As I mentioned in my last post, I have told very few people - only you my gentle readers, family, my best friend (sort of) and a few folks at work. The Hubby, however, appears to have taken out a full page ad in the Tribune-Review. A long-time friend of his who visited last weekend, another guy he met in the Army, the former Religious Education director at the kids' school (who has probably told his wife), and I think both of the neighbors. I only found out about this because I was poking around trying to find out how to dispose of a sharps container, and he said, "Why don't you ask Maria?" Come to find out he was talking about me to Maria's husband, the Religious Ed guy. This is a man who won't put my picture on his desk at work or talk about me to co-workers because his relationship with his wife is "private."
I'm rather miffed about it. I mean I know all these folks. They are nice people. But this is my health. I'm the one who ought to be telling people about it, in my own time and in my own way. I have no idea how discreet any of these folks really are, so now I have to assume that they, in turn, have told other people. And frankly, I don't feel like being a topic of conversation for other people, some of whom are potentially people who I don't really trust all that much. Wonderful.
So on the plus side, injections not that bad (so far). On the negative side, I feel like I've lost control of who knows what about my personal life. I guess batting .500 ain't so bad.
I must be brutally honest here. While I would prefer not to be doing this at all, the manufacturers really have made this as "painless" as possible. There is nothing to mix; the syringes come pre-filled. The need is ultra-fine (29mm), much smaller than the needle used for flue shots, and I don't think that is particularly painful. Banish thoughts of jabbing yourself and pushing the plunger down. All you do is cock the auto-injector, drop in the syringe, yank off the needle cap (this part occasionally doesn't work so well, but you can get the cap off manually if necessary), swab some alcohol, position the injector, push the button. A tiny prick and 10 seconds later, you're done. And actually, you don't really need to wait 10 seconds; when a series of black lines shows up in the injector window, the syringe is empty. No fuss, no muss. Blot the dot of blood, take the syringe out of the injector, throw it in the sharps container, go to bed.
Three doses in, I haven't noticed any side effects. I had achy knee joints the first two nights, but I have no idea if that was because of the meds or because, well, my knees are twice as old as the rest of me and ache in damp weather. Regardless, two Tylenol killed the pain enough for me to sleep like a rock. The regimen builds up the dosage slowly (8 mcg for 2 weeks, 22 mcg for 2 weeks, then 44 mcg) to minimize effects, but so far, so good.
And the syringes came with a sharps container. Now I just need to find out the rules on how to get rid of it.
So all in all, I'm thinking if you absolutely have to do this, this would be the preferred method. Now if I could just get the friggin' cap remover to work, I'd be golden.
Oh, and the kids? Well, that concern evaporated. I told The Girl a few days before the meds showed up. I had to make some phone calls in front of her, and I didn't want her to freak out about me talking about needles and injections. She took it pretty well and said as long as I wasn't going to panic, she wouldn't. Smart kid.
Of course, the following Monday night when the nurse showed up to do the injection training, both kids crowded around the dining room table. "Whatcha doing, Mama? Can I watch? Can I see?" It was kind of like a freak show at the circus. For the sake of my concentration, I sent them back to Webkinz World. Sheesh. Who knew watching me give test injections to an orange could be so fascinating?
Oh yeah, and my bp after all this was 100/66 and resting pulse 74, so clearly I was neither stressed at the time, nor am I at risk of falling over dead from hypertension.
There was also a moment of morbid humor. The first couple times, the needle was bent when I removed the syringe. However, the syringe was empty and there was no liquid on my skin or the floor, so I concluded it had successfully been injected. In musing over this, I remarked that at least I hadn't wasted $4,000. At The Hubby's blank look, I explained each dose was about $2,000. After a moment, he said, "Jeez, babe, the wheelchair would be cheaper." I was not amused. My boss was not amused. My friend at work, who admittedly has a rather black sense of humor, thought it was hilarious. Perhaps I just needed to look at it in retrospect, he said. Been almost a week; still not that funny.
Now for the irritating part. As I mentioned in my last post, I have told very few people - only you my gentle readers, family, my best friend (sort of) and a few folks at work. The Hubby, however, appears to have taken out a full page ad in the Tribune-Review. A long-time friend of his who visited last weekend, another guy he met in the Army, the former Religious Education director at the kids' school (who has probably told his wife), and I think both of the neighbors. I only found out about this because I was poking around trying to find out how to dispose of a sharps container, and he said, "Why don't you ask Maria?" Come to find out he was talking about me to Maria's husband, the Religious Ed guy. This is a man who won't put my picture on his desk at work or talk about me to co-workers because his relationship with his wife is "private."
I'm rather miffed about it. I mean I know all these folks. They are nice people. But this is my health. I'm the one who ought to be telling people about it, in my own time and in my own way. I have no idea how discreet any of these folks really are, so now I have to assume that they, in turn, have told other people. And frankly, I don't feel like being a topic of conversation for other people, some of whom are potentially people who I don't really trust all that much. Wonderful.
So on the plus side, injections not that bad (so far). On the negative side, I feel like I've lost control of who knows what about my personal life. I guess batting .500 ain't so bad.
Tuesday, June 17, 2008
Lemons and Lemonade
Isn't that how it goes - or something along those lines?
For those of you who are unfamiliar with my saga, let me explain. No, there is too much. Let me sum up.
Sorry.
The past nine months have been quite a roller coaster. Vertigo lead to a preliminary diagnosis of multiple sclerosis. After consultation with a specialist, that diagnosis was put on hold until after a second MRI in April. But now it's official.
I have MS.
It still feels a little weird to say. So weird, in fact, that I have not told very many people at all outside my family of course. My boss, one friend at work, and my HR rep, just to make sure I didn't have to do anything special with my insurance. But beyond that, I find myself strangely unwilling to make a formal announcement to any of the people who knew what I was going through in the fall.
Part of this is because, I'm sure, that the natural first reaction will be, "Oh god, I'm so sorry." Yet that's not really what I want and I think perhaps I can't deal with repeated expressions like this, no matter how heartfelt. See, as devastated as I was last fall, I'm not now. Really. Honest to god, I'm okay. When the doc told me, he had a med student shadowing him for the day. She kept looking at me as though she was expecting me to dissolve into hysterics. I think even he was a little surprised at how calm I was.
But see, I've already done the hysterical bit - last fall. I've had nine months to more or less accept this probability. I say probability because somewhere in my heart of hearts, I knew this was not going to turn out to be "nothing." By the time the doc actually got around to saying, "Yes, you have MS," my initial reaction was relief. No more wondering, no more guessing, no more test after test trying to figure it out. This is what your problem is. Here is the course of action we are going to take. The uncertainty of it all was far worse than the reality. I'm the kind of person who can deal with almost anything if I have facts and a plan of action.
Last fall, I had only the shock of the initial diagnosis - How can this be happening to me - I don't have any family history of this! - and then uncertainty. Maybe, maybe not. Wait and watch. It was unnerving. But now, I have the three things The Hubby says are essential to any journey: a map, a plan, and a list.
Don't get me wrong. This is going to suck - big time. It's going to suck because the only approved treatments for MS are self-injections. The medication I am going to take is called Rebif - a three-times-a-week subcutaneous injection. You get little pre-filled syringes via the mail, and there's a handy little auto-injector to administer the dose. Fun wow, right - NOT. Most people experience flu-like symptoms until their bodies adjust. Common (but rare - of course) side effects are depression, increase in liver enzymes, and increase in white blood cell count. Basically, if I feel like slitting my wrists, I turn yellow, or bleed like a stuck pig every time I nick myself, call my doctor. Wonderful.
Best part of all? There is currently no cure for MS. That means, of course, that I get to do this until a) they come up with an oral treatment, b) they find a cure, or c) I die. Whichever comes first. Yippy skippy doo.
Oddly, The Hubby had a harder time adjusting to the news that I did. He was so certain last fall that it would turn out to be nothing. Then I think he had convinced himself that even if it did turn out to be MS, I wouldn't actually need treatment. After all, he has a friend who has had MS for 15 years. He doesn't take anything and firmly believes none of the drugs actually work. I respect that, but I think I'll take a medical professional's advice. Especially since I enjoy walking, being independent, and seeing - all things that could be gone the moment damage occurs to the "right" nerve.
Fortunately, I have a good doctor and a good insurance plan. I got a call the following day from MS Lifelines, an organization that provides support, payment help, and training for MS patients. I received the auto-injector and a travel kit a few days later. By the end of the week, I had a letter saying that the prescription was approved by my insurance carrier. That last is important because believe you me, this shit is expensive. Costs run anywhere from $1,500-$2,000 per dose. Total costs can be as high as $18,000 per year. Me? I'll pay $40 every three months for a prescription co-pay (have I mentioned lately that my employer provides kick-ass health insurance?). That's one worry I don't have to deal with.
So now as I await the call from the nursing agency to arrange training, I'm only left to worry about a few things. For example, used needles are bio hazard waste. How the hell do I get rid of those? I mean, my municipal garbage service is pretty good, but I don't think they take used needles. Of course, as my aunt pointed out there are thousands of diabetics doing insulin injections every day. There has to be a procedure. Duh, why didn't I think of that?
Thinking about diabetics has also prevented me from feeling too sorry for myself. I only have to do this three times a week. Diabetics do this every day. Who's got it easier? In the words of Fox news, we report, you decide.
Then there's the bigger worry. How do I tell my kids and what do I tell them? It's not like they won't know what's going on. They're pretty smart, but still only 8 and 6. My aunt suggested talking to a support group for ideas, but if I'm reluctant to talk to friends, I'm sure not ready to talk to strangers. And how much do they really need to know? I don't want hide things and pretend it's all fine, but I don't think I really have to launch a dissertation on the workings of the central nervous system either. At least the doc was able to address one of my big concerns - MS doesn't appear to be hereditary (you think I would have figured that out on my own, seeing as nobody in my family has ever been diagnosed). He said the chances of one of them developing MS was "extremely low." Good to know.
So there you have it. Ultimately, this will be horribly unfun, and I'm sure some days will suck. But I'll make it - I have to, there just isn't a choice. I've got too much life left to live.
But it's a good thing I like lemonade.
For those of you who are unfamiliar with my saga, let me explain. No, there is too much. Let me sum up.
Sorry.
The past nine months have been quite a roller coaster. Vertigo lead to a preliminary diagnosis of multiple sclerosis. After consultation with a specialist, that diagnosis was put on hold until after a second MRI in April. But now it's official.
I have MS.
It still feels a little weird to say. So weird, in fact, that I have not told very many people at all outside my family of course. My boss, one friend at work, and my HR rep, just to make sure I didn't have to do anything special with my insurance. But beyond that, I find myself strangely unwilling to make a formal announcement to any of the people who knew what I was going through in the fall.
Part of this is because, I'm sure, that the natural first reaction will be, "Oh god, I'm so sorry." Yet that's not really what I want and I think perhaps I can't deal with repeated expressions like this, no matter how heartfelt. See, as devastated as I was last fall, I'm not now. Really. Honest to god, I'm okay. When the doc told me, he had a med student shadowing him for the day. She kept looking at me as though she was expecting me to dissolve into hysterics. I think even he was a little surprised at how calm I was.
But see, I've already done the hysterical bit - last fall. I've had nine months to more or less accept this probability. I say probability because somewhere in my heart of hearts, I knew this was not going to turn out to be "nothing." By the time the doc actually got around to saying, "Yes, you have MS," my initial reaction was relief. No more wondering, no more guessing, no more test after test trying to figure it out. This is what your problem is. Here is the course of action we are going to take. The uncertainty of it all was far worse than the reality. I'm the kind of person who can deal with almost anything if I have facts and a plan of action.
Last fall, I had only the shock of the initial diagnosis - How can this be happening to me - I don't have any family history of this! - and then uncertainty. Maybe, maybe not. Wait and watch. It was unnerving. But now, I have the three things The Hubby says are essential to any journey: a map, a plan, and a list.
Don't get me wrong. This is going to suck - big time. It's going to suck because the only approved treatments for MS are self-injections. The medication I am going to take is called Rebif - a three-times-a-week subcutaneous injection. You get little pre-filled syringes via the mail, and there's a handy little auto-injector to administer the dose. Fun wow, right - NOT. Most people experience flu-like symptoms until their bodies adjust. Common (but rare - of course) side effects are depression, increase in liver enzymes, and increase in white blood cell count. Basically, if I feel like slitting my wrists, I turn yellow, or bleed like a stuck pig every time I nick myself, call my doctor. Wonderful.
Best part of all? There is currently no cure for MS. That means, of course, that I get to do this until a) they come up with an oral treatment, b) they find a cure, or c) I die. Whichever comes first. Yippy skippy doo.
Oddly, The Hubby had a harder time adjusting to the news that I did. He was so certain last fall that it would turn out to be nothing. Then I think he had convinced himself that even if it did turn out to be MS, I wouldn't actually need treatment. After all, he has a friend who has had MS for 15 years. He doesn't take anything and firmly believes none of the drugs actually work. I respect that, but I think I'll take a medical professional's advice. Especially since I enjoy walking, being independent, and seeing - all things that could be gone the moment damage occurs to the "right" nerve.
Fortunately, I have a good doctor and a good insurance plan. I got a call the following day from MS Lifelines, an organization that provides support, payment help, and training for MS patients. I received the auto-injector and a travel kit a few days later. By the end of the week, I had a letter saying that the prescription was approved by my insurance carrier. That last is important because believe you me, this shit is expensive. Costs run anywhere from $1,500-$2,000 per dose. Total costs can be as high as $18,000 per year. Me? I'll pay $40 every three months for a prescription co-pay (have I mentioned lately that my employer provides kick-ass health insurance?). That's one worry I don't have to deal with.
So now as I await the call from the nursing agency to arrange training, I'm only left to worry about a few things. For example, used needles are bio hazard waste. How the hell do I get rid of those? I mean, my municipal garbage service is pretty good, but I don't think they take used needles. Of course, as my aunt pointed out there are thousands of diabetics doing insulin injections every day. There has to be a procedure. Duh, why didn't I think of that?
Thinking about diabetics has also prevented me from feeling too sorry for myself. I only have to do this three times a week. Diabetics do this every day. Who's got it easier? In the words of Fox news, we report, you decide.
Then there's the bigger worry. How do I tell my kids and what do I tell them? It's not like they won't know what's going on. They're pretty smart, but still only 8 and 6. My aunt suggested talking to a support group for ideas, but if I'm reluctant to talk to friends, I'm sure not ready to talk to strangers. And how much do they really need to know? I don't want hide things and pretend it's all fine, but I don't think I really have to launch a dissertation on the workings of the central nervous system either. At least the doc was able to address one of my big concerns - MS doesn't appear to be hereditary (you think I would have figured that out on my own, seeing as nobody in my family has ever been diagnosed). He said the chances of one of them developing MS was "extremely low." Good to know.
So there you have it. Ultimately, this will be horribly unfun, and I'm sure some days will suck. But I'll make it - I have to, there just isn't a choice. I've got too much life left to live.
But it's a good thing I like lemonade.
Thursday, June 5, 2008
I Love Summer
I sit here on a warm June night, on a cushy porch chair, dog lying beside me, typing away. Aside from the occasional passing car, I hear the call of night birds, some chirping from my rhododendron that is slowing losing its leaves (can birds nest in a rhododendron bush?), and the trickle of my neighbor's fountain. It is still and peaceful, not yet warm enough for fireflies.
God I love summer.
God I love summer.
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