What have we learned since May? Let's try a brief list and see how it goes. It may be the only way to get self blogging regularly again.
a) Humira never really kicked in.
b) Orencia is hideously expensive and my insurance hates me
c) narcotics are my friend despite swearing I'd never go to that length
d) My son still doesn't give a fuck about his grades, but he's great at Halo. He's also a great kid and one of my sole sources of joy lately. He just doesn't care if he finishes high school. GAH!
e) My mother-in-law is never, ever leaving and you have no idea how depressing that thought is
f) I will always be broke
g) the phrase "embrace your pain" makes me want to whack peaceful meditation consultants in the head with a large and heavy blunt object
h) Housekeeping was always overrated, but has become completely superfluous
i) I want to do and say mean things to the husband of my dearest friend. I used to think this man was a real gem. Not anymore.
j) my blood pressure is astronomically high
k) my mother is still alive and struggling a lot less than I thought she would be by this time
l) my husband is completely fed up with my RA and wants his regular wife back - she's gone
m) Everything hurts and nobody gets it
n) I can't knit anymore
o) acupuncture hasn't helped yet, but the nice rest on the table is probably worth the $5 co-pay
p) I need sleep. See the previous list item under "m"
Thursday, September 6, 2012
Monday, May 14, 2012
The fine art of self loathing
I'm going to wallow in self-pity here. It's not a crisis. I'm venting.
Humira isn't kicking in. How long does this take? I know, it's only been a week and that it can take months, but I've been being treated by a good rheumatologist for six months now and nothing is working. Is it me? Am I going to be one of the 30 to 40% who respond to absolutely no drugs for RA? Is he wrong? Is there something else wrong with me? I know there are blood markers, etc. that are supposed to verify my illness, and I know that some of mine are exceedingly high, but I've never asked which ones or what they mean. I've trusted him completely. Maybe he's wrong, though. Maybe there's something else wrong with me and I'm taking all these scary drugs for nothing. Is it heresy to doubt your nice rheumatologist?
He wants me to try Actemra if this doesn't work. He gave me spiffy pamphlet on it. I don't want to do IV drugs. I'm not that sick. Or I sure as hell don't want to be. Plus, the common side effects include a rise in blood pressure, which I can't afford. My blood pressure has been a struggle for months. If I let him hose this drug into my vein and it has a half-life, what the hell happens if my blood pressure shoots up? Yes, it's pretty clear I need to make a list of questions for Dr. L and ask them at my next appointment. I just want to go to a doctor and be FIXED!! I don't like all this complicated medical crap. I need a straightforward minor infection that can be healed with antibiotics, not all this rheumatoid arthritis garbage. Where do I apply for a change in illness?
My son is driving me nuts. B has always been such an excellent young man. He still is. Absolutely wonderful. Well behaved. Sweet and kind and caring. He just doesn't give a flying fuck about his grades at school these days. He's 16 and needs to get his poop in a group. I wonder if he's afraid of growing up.
Same lovely son as in previous paragraph has a band concert tomorrow night. They will be performing one of HIS compositions. That's right. My brilliantly talented boy has composed a piece for symphonic band that will be played by his school - and the kids like it. How amazing is that? I think it's extremely impressive and I'm intensely proud of him, yet I'm still wondering why the hell he can't pass history. Oh, he can pass it. He just doesn't care!
Diablo III comes out at midnight tonight. This is one of the best games ever, and I was an early player of the first two versions, many MANY years ago. I'm thrilled to have this one coming out, and I'm dying to play it. I beta tested for it, and what little I played had me itching for more. But get this: I am such a crappy human being that I'm resentful I can't spend all night awake playing video games because I have to get my son to school and go to work and be a responsible adult the next day. I probably won't get to play much until the weekend. (And I wonder why my kid doesn't give a crap about being a grownup? Hush.) I'm really not crazy about being a responsible adult lately. I'm tired of it, in fact.
Humira isn't kicking in. How long does this take? I know, it's only been a week and that it can take months, but I've been being treated by a good rheumatologist for six months now and nothing is working. Is it me? Am I going to be one of the 30 to 40% who respond to absolutely no drugs for RA? Is he wrong? Is there something else wrong with me? I know there are blood markers, etc. that are supposed to verify my illness, and I know that some of mine are exceedingly high, but I've never asked which ones or what they mean. I've trusted him completely. Maybe he's wrong, though. Maybe there's something else wrong with me and I'm taking all these scary drugs for nothing. Is it heresy to doubt your nice rheumatologist?
He wants me to try Actemra if this doesn't work. He gave me spiffy pamphlet on it. I don't want to do IV drugs. I'm not that sick. Or I sure as hell don't want to be. Plus, the common side effects include a rise in blood pressure, which I can't afford. My blood pressure has been a struggle for months. If I let him hose this drug into my vein and it has a half-life, what the hell happens if my blood pressure shoots up? Yes, it's pretty clear I need to make a list of questions for Dr. L and ask them at my next appointment. I just want to go to a doctor and be FIXED!! I don't like all this complicated medical crap. I need a straightforward minor infection that can be healed with antibiotics, not all this rheumatoid arthritis garbage. Where do I apply for a change in illness?
My son is driving me nuts. B has always been such an excellent young man. He still is. Absolutely wonderful. Well behaved. Sweet and kind and caring. He just doesn't give a flying fuck about his grades at school these days. He's 16 and needs to get his poop in a group. I wonder if he's afraid of growing up.
Same lovely son as in previous paragraph has a band concert tomorrow night. They will be performing one of HIS compositions. That's right. My brilliantly talented boy has composed a piece for symphonic band that will be played by his school - and the kids like it. How amazing is that? I think it's extremely impressive and I'm intensely proud of him, yet I'm still wondering why the hell he can't pass history. Oh, he can pass it. He just doesn't care!
Diablo III comes out at midnight tonight. This is one of the best games ever, and I was an early player of the first two versions, many MANY years ago. I'm thrilled to have this one coming out, and I'm dying to play it. I beta tested for it, and what little I played had me itching for more. But get this: I am such a crappy human being that I'm resentful I can't spend all night awake playing video games because I have to get my son to school and go to work and be a responsible adult the next day. I probably won't get to play much until the weekend. (And I wonder why my kid doesn't give a crap about being a grownup? Hush.) I'm really not crazy about being a responsible adult lately. I'm tired of it, in fact.
Monday, May 7, 2012
The Will to Fight
Hello there, poor nearly-abandoned blog! I really didn't mean to do this to you. I had the best of intentions.
The thing is, my mother wound up hospitalized last week, and there was a lot to deal with. It seems she went into a-fib and didn't know it until a routine doctor's appointment last Monday the 30th. Her GP heard the heartbeat, pushed her into a wheelchair, and took her across the street to the hospital where she stayed until Friday at 6:00pm. They can't get her heart back into its normal rhythm. She's constantly in a-fib and is now on coumadin (which is also used for rat poison, did you know that?) to help prevent her from throwing a clot to her brain. She has congestive heart failure, which probably won't kill her before her COPD does. They can't shock her back into a normal rhythm because her COPD couldn't withstand it.
She's a complicated health case, most of it because she has a long history of smoking. She's 75 years old, which isn't as old as it once was, but seems to be getting pretty close her limit. I'm trying to adjust to that concept, so pardon me if I sound cavalier about it. Nothing could be further from the truth. It's just that I need to be able to say it until I can accept it. This is my mommy. My sister, my children, and myself will never be ready to let her go, but we are learning to accept that she does not want any sort of extraordinary measures taken to save her. We spent hours with various doctors before her release going over the what-if situations and filling in all of her living will and medical directive stuff. She doesn't even want CPR because of the diminishing returns in people with COPD - odds are she wouldn't survive it, and if she did, her quality of life would be minimal.
How long does she have? No one knows exactly. The cardiologist and pulmonologist both say "she has a good while. Probably a few years. Who knows?" She looks small, pale, and tired. In spite of that, she's her feisty self, which is good. She's fighting with my sister about lawn sprinklers, so she's healthy enough to do battle.
How am I? Well, the notion that my RA might respond negatively to stress has certainly been proven. I can barely walk. Can't get closed toe shoes on to save my soul. My hands are stiff and sore, my ankles feel like knives are being driven into them, and my feet are just horrendously painful. No one else gets it, though. There are way too many other things to be concerned about, so I suck it up and soldier on and try not to complain because what good is it really going to do? I see Dr. L on Wednesday. Twice weekly Enbrel isn't getting it, but would anything when I'm this stressed out?
I've missed too much work to stay home and wallow in self-pity. It's raining and would have liked to stay in bed and read or knit. Not today.
The thing is, my mother wound up hospitalized last week, and there was a lot to deal with. It seems she went into a-fib and didn't know it until a routine doctor's appointment last Monday the 30th. Her GP heard the heartbeat, pushed her into a wheelchair, and took her across the street to the hospital where she stayed until Friday at 6:00pm. They can't get her heart back into its normal rhythm. She's constantly in a-fib and is now on coumadin (which is also used for rat poison, did you know that?) to help prevent her from throwing a clot to her brain. She has congestive heart failure, which probably won't kill her before her COPD does. They can't shock her back into a normal rhythm because her COPD couldn't withstand it.
She's a complicated health case, most of it because she has a long history of smoking. She's 75 years old, which isn't as old as it once was, but seems to be getting pretty close her limit. I'm trying to adjust to that concept, so pardon me if I sound cavalier about it. Nothing could be further from the truth. It's just that I need to be able to say it until I can accept it. This is my mommy. My sister, my children, and myself will never be ready to let her go, but we are learning to accept that she does not want any sort of extraordinary measures taken to save her. We spent hours with various doctors before her release going over the what-if situations and filling in all of her living will and medical directive stuff. She doesn't even want CPR because of the diminishing returns in people with COPD - odds are she wouldn't survive it, and if she did, her quality of life would be minimal.
How long does she have? No one knows exactly. The cardiologist and pulmonologist both say "she has a good while. Probably a few years. Who knows?" She looks small, pale, and tired. In spite of that, she's her feisty self, which is good. She's fighting with my sister about lawn sprinklers, so she's healthy enough to do battle.
How am I? Well, the notion that my RA might respond negatively to stress has certainly been proven. I can barely walk. Can't get closed toe shoes on to save my soul. My hands are stiff and sore, my ankles feel like knives are being driven into them, and my feet are just horrendously painful. No one else gets it, though. There are way too many other things to be concerned about, so I suck it up and soldier on and try not to complain because what good is it really going to do? I see Dr. L on Wednesday. Twice weekly Enbrel isn't getting it, but would anything when I'm this stressed out?
I've missed too much work to stay home and wallow in self-pity. It's raining and would have liked to stay in bed and read or knit. Not today.
Thursday, April 26, 2012
oh dear
It's been the better part of a month and I've blogged absolutely nothing. Wow. If you recall my previous blog, I used to post something nearly every day. I can't even claim I've been too busy or too flare-y from the RA. I've been too lazy and had nothing much constructive to say, I guess.
Rheumatoid Arthritis seems to be moving through my system like wildfire, and the Enbrel doesn't seem to be having much effect. I've heard various frightening things about diminishing returns - if you start on one biologic and it doesn't do you any good, you're not going to get much better on another. My rheumatologist seems to think he can still get me comfortable and functional. I like the man, but I'm starting to lose faith.
My husband is tired of the RA and pretty much just wants the old wife I used to be. He doesn't like this version. She's got too many problems and doesn't do as much. I think my son feels pretty much the same.
Oh, lord. I'm wallowing in self-pity. I really don't feel that badly right now. Just a bit discouraged.
I've been talking to one of my dearest friends during my commute in the morning through the miracles of cell phone and Skype. I can't tell you how much that improves my days! She and I have a long and colorful history, and I miss her so terribly. The sound of her voice and her recent company have been enormously helpful.
My family of origin, however? Batshit crazy as always. I talked to my sister the other night and found myself laughing (aloud and quite inappropriately) at her complaints. It never ceases to amaze me that my family can turn a garden hose into a major international incident without an real provocation. I love them, though.
Rheumatoid Arthritis seems to be moving through my system like wildfire, and the Enbrel doesn't seem to be having much effect. I've heard various frightening things about diminishing returns - if you start on one biologic and it doesn't do you any good, you're not going to get much better on another. My rheumatologist seems to think he can still get me comfortable and functional. I like the man, but I'm starting to lose faith.
My husband is tired of the RA and pretty much just wants the old wife I used to be. He doesn't like this version. She's got too many problems and doesn't do as much. I think my son feels pretty much the same.
Oh, lord. I'm wallowing in self-pity. I really don't feel that badly right now. Just a bit discouraged.
I've been talking to one of my dearest friends during my commute in the morning through the miracles of cell phone and Skype. I can't tell you how much that improves my days! She and I have a long and colorful history, and I miss her so terribly. The sound of her voice and her recent company have been enormously helpful.
My family of origin, however? Batshit crazy as always. I talked to my sister the other night and found myself laughing (aloud and quite inappropriately) at her complaints. It never ceases to amaze me that my family can turn a garden hose into a major international incident without an real provocation. I love them, though.
Monday, April 9, 2012
Still not dead...
Whoops! Sorry about the blogging hiatus there. It was totally unintended. Things got very hectic at work, in the personal life, and with the RA. The combination completely prevented a few minutes of quiet time to sit down and blog a bit.
My son turned 16 yesterday on Easter. My baby. Strangely, it wasn't as emotional as 15 was last year. I have no idea why, but 15 nearly broke my heart, but 16 was just a very happy birthday. Yes, the driver's license will be procured later this week. He's very responsible, so I don't particularly worry about him doing something stupid. It's other drivers I worry about.
Not blogging about the idiocy that goes on at work is harder than you might think. We have lots and lots of idiocy in this place, but I just don't know how to tell some of these stories without completely giving away everything about this place which could be detrimental on many levels. Just remember, boys and girls, that you cannot take a drug test until you pass it. It's a one time thing. So make sure you're clean when you take it and remember that the artificial pee sold in the back of "Stoner" magazine is detectable by a good lab no matter how long you strap it to your leg. OK?
Well, I finally let the rheumatologist break out the big guns. I had a nasty flare last week that had me crying for mercy, and I called the amazing Dr. L. He calls me back himself, notices when I have a new haircut, and is generally one of the nicest guys I've ever met. I may have to leave my husband for him if he can actually fix this whole RA thing. No, not really, but he can certainly have my first born. (No one wants a grad student anyway. Too expensive!) Anyhow, I finally agreed to take some Vicodin for the pain. Yes, I am a complete wimp and realized that it's paracetamol and sold over the counter to some of my foreign friends, but I do not like codeine in any form. It tends to make me drowsy and barfy. Not a good combination at all. My blood pressure was still up, even with the addition of other BP meds (three now!) and the pain was intense without the NSAIDS. The inflammation was skyrocketing and the Enbrel seems to be failing. (Sigh) As a stop-gap sort of measure, he prescribed Hydrocodone to see if he could break the cycle of pain pushing blood pressure pushing pain because we're both quite leery of hitting me with even very lose doses of prednisone right now.
Two pills (plus and anti-nausea med) and twenty minutes later, I was singing Pink Floyd songs and feeling just dandy. My feet still hurt, but I really didn't give a crap. It was great. Which is one of the reasons I don't like that stuff. It makes me want more of it, which is not a good plan. My feet are currently hurting a bit less, but I've got some peripheral neuropathy that's making me NUTS. I see the amazing Dr. L again on the 18th, so I'll bring it up with him.
Meanwhile, a well meaning friend continues to send me all sort of information about anti-inflammatory diets, miracle cures for RA, my need for exercise, and lots of other advice. Look, I fully realize that doctors and pharmaceutical companies are making a freaking fortune treating rheumatoid arthritis. Maybe my friend is right and there's no incentive for them to find a cure. I just know that the very kind and helpful Dr. L says 99% of what's written about RA cures is pure, unadulterated bullshit and that he will help me to the best of his ability. He seems like a better bet that a friend with no medical degree and lots of books and healy-feely cures, right? Maybe I'm doing all the wrong things. How do you know?
My son turned 16 yesterday on Easter. My baby. Strangely, it wasn't as emotional as 15 was last year. I have no idea why, but 15 nearly broke my heart, but 16 was just a very happy birthday. Yes, the driver's license will be procured later this week. He's very responsible, so I don't particularly worry about him doing something stupid. It's other drivers I worry about.
Not blogging about the idiocy that goes on at work is harder than you might think. We have lots and lots of idiocy in this place, but I just don't know how to tell some of these stories without completely giving away everything about this place which could be detrimental on many levels. Just remember, boys and girls, that you cannot take a drug test until you pass it. It's a one time thing. So make sure you're clean when you take it and remember that the artificial pee sold in the back of "Stoner" magazine is detectable by a good lab no matter how long you strap it to your leg. OK?
Well, I finally let the rheumatologist break out the big guns. I had a nasty flare last week that had me crying for mercy, and I called the amazing Dr. L. He calls me back himself, notices when I have a new haircut, and is generally one of the nicest guys I've ever met. I may have to leave my husband for him if he can actually fix this whole RA thing. No, not really, but he can certainly have my first born. (No one wants a grad student anyway. Too expensive!) Anyhow, I finally agreed to take some Vicodin for the pain. Yes, I am a complete wimp and realized that it's paracetamol and sold over the counter to some of my foreign friends, but I do not like codeine in any form. It tends to make me drowsy and barfy. Not a good combination at all. My blood pressure was still up, even with the addition of other BP meds (three now!) and the pain was intense without the NSAIDS. The inflammation was skyrocketing and the Enbrel seems to be failing. (Sigh) As a stop-gap sort of measure, he prescribed Hydrocodone to see if he could break the cycle of pain pushing blood pressure pushing pain because we're both quite leery of hitting me with even very lose doses of prednisone right now.
Two pills (plus and anti-nausea med) and twenty minutes later, I was singing Pink Floyd songs and feeling just dandy. My feet still hurt, but I really didn't give a crap. It was great. Which is one of the reasons I don't like that stuff. It makes me want more of it, which is not a good plan. My feet are currently hurting a bit less, but I've got some peripheral neuropathy that's making me NUTS. I see the amazing Dr. L again on the 18th, so I'll bring it up with him.
Meanwhile, a well meaning friend continues to send me all sort of information about anti-inflammatory diets, miracle cures for RA, my need for exercise, and lots of other advice. Look, I fully realize that doctors and pharmaceutical companies are making a freaking fortune treating rheumatoid arthritis. Maybe my friend is right and there's no incentive for them to find a cure. I just know that the very kind and helpful Dr. L says 99% of what's written about RA cures is pure, unadulterated bullshit and that he will help me to the best of his ability. He seems like a better bet that a friend with no medical degree and lots of books and healy-feely cures, right? Maybe I'm doing all the wrong things. How do you know?
Tuesday, March 20, 2012
Husband wins
I've learned this week that feeling horrible can actually pay off! If not in fun, at least it appears to be paying in material goods when my beleaguered and infinitely patient husband feels I need cheering. Dear friends, I became the proud parent of a New iPad last Friday evening. I didn't ask for it. I have never owned one of these delightful little toys before. While it is very much an overgrown iPhone, it's also beautiful, slick, fun, and very cheering indeed. He really shouldn't have done that, but I'm enjoying it a great deal. Yes, he will get a whole lot of mileage out of that one. I can't get mad at him for at least three weeks. Maybe longer. Actually, it's pretty rare for us to argue anymore. It just wastes time and really doesn't solve anything, so we don't bother much anymore. When we do, it's really ugly.
I know I said the blog wasn't going to become an RA blog because it's already well covered, but screw it. I'm going to bitch about it some more anyhow.
NSAIDs cause your blood pressure to rise. Or they can. And mine has been hovering right around 165/90 which isn't quite gasket-blowing level, but mighty damned close. I've been treated for high blood pressure for nearly a decade, but my cholesterol is normal and always has been, so I've taken the meds and not given it much thought until recently when I could feel it getting out of control -- Headaches, jangled and anxious feeling, you know how it goes. Or maybe you don't. Anyhow, I went to the regular PCP about it, and was told to stop taking the NSAIDs and triple my 10mg dose of lisinopril until it falls back into a normal range. It's not going down and the sudden withdrawal of the NSAIDs is causing pain and swelling, not to mention extraordinary fussiness and fear imminent stroke. I suppose I need to call the doctor's office again.
In alternate news, I am utterly fascinated by this website of cool, overpriced South Korean things, and clearly need the Rabbit Toilet Paper Case because it would be so very useful. I actually love the purse organizers, but they're absurdly priced.
I know I said the blog wasn't going to become an RA blog because it's already well covered, but screw it. I'm going to bitch about it some more anyhow.
NSAIDs cause your blood pressure to rise. Or they can. And mine has been hovering right around 165/90 which isn't quite gasket-blowing level, but mighty damned close. I've been treated for high blood pressure for nearly a decade, but my cholesterol is normal and always has been, so I've taken the meds and not given it much thought until recently when I could feel it getting out of control -- Headaches, jangled and anxious feeling, you know how it goes. Or maybe you don't. Anyhow, I went to the regular PCP about it, and was told to stop taking the NSAIDs and triple my 10mg dose of lisinopril until it falls back into a normal range. It's not going down and the sudden withdrawal of the NSAIDs is causing pain and swelling, not to mention extraordinary fussiness and fear imminent stroke. I suppose I need to call the doctor's office again.
In alternate news, I am utterly fascinated by this website of cool, overpriced South Korean things, and clearly need the Rabbit Toilet Paper Case because it would be so very useful. I actually love the purse organizers, but they're absurdly priced.
Thursday, March 15, 2012
Things I've recently learned
Here's a list of random things I've learned recently - because one must never stop learning, right?
1) People who say "Oh, I have a little bit of that in my knee," about rheumatoid arthritis make me alternate between the desire to educate them and the desire to whack them in the head with a blunt instrument. I've learned to smile and walk away.
2) Fake mustaches can be purchased in six packs at our local Hobby Lobby.
3) My mother-in-law thinks that any nice thing I say about my husband is a direct compliment to her for having raised him. It's not necessary to enlighten her regarding the truth.
4) It is expensive when the head gasket in a car needs to be replaced.
5) I might like to live (alone) in a place like this. (No, I'm not leaving home and family. It's just that I sometimes crave solitude and the concept of living more simply is quite appealing to someone raised by a packrat.)
6) There are eighteen different animal shapes in a standard box of Barnum's animal crackers.
7) Enbrel: that shit burns like crazy when injected.
8) I want the new iPad - the first two versions didn't interest me that much, but I'm suddenly smitten with an inexplicable burst of consumerism and desperately want one.
9) Cat pee glows when exposed to a black light
10) I really don't give a crap about March Madness or brackets.
1) People who say "Oh, I have a little bit of that in my knee," about rheumatoid arthritis make me alternate between the desire to educate them and the desire to whack them in the head with a blunt instrument. I've learned to smile and walk away.
2) Fake mustaches can be purchased in six packs at our local Hobby Lobby.
3) My mother-in-law thinks that any nice thing I say about my husband is a direct compliment to her for having raised him. It's not necessary to enlighten her regarding the truth.
4) It is expensive when the head gasket in a car needs to be replaced.
5) I might like to live (alone) in a place like this. (No, I'm not leaving home and family. It's just that I sometimes crave solitude and the concept of living more simply is quite appealing to someone raised by a packrat.)
6) There are eighteen different animal shapes in a standard box of Barnum's animal crackers.
7) Enbrel: that shit burns like crazy when injected.
8) I want the new iPad - the first two versions didn't interest me that much, but I'm suddenly smitten with an inexplicable burst of consumerism and desperately want one.
9) Cat pee glows when exposed to a black light
10) I really don't give a crap about March Madness or brackets.
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