We've discussed this before.
You can't believe every claim of a miracle cure-all that you see online or read about in Oprah magazine. The list of fabulous natural "remedies" I have tried is ridiculously long. And you can add a new one: turmeric. ERRYBODY be on about turmeric these days. I gave it a shot, what can I say? I carefully researched the right type to take and what additives it needed/didn't need. Then I faithfully took these freaking pills as big as a damn house twice a day for TWO MONTHS. And I got nothin'. Sorry, guys. For the record? Turmeric belongs in tasty curry. I did try a facial cream with turmeric, and that seems to help a little with skin yuckiness, but the benefits have not extended to taking it internally for my RA. My husband (chronic migraines) also gave it a try to no avail.
Maybe you'll have better luck, a lot of people say they love it. But seriously? Who wants to gag these suckers down on the regular, anyway?
Also for the record:
Things that didn't work:
-every vitamin
-cinnamon pills
-dermarolling
-ultrasound therapy
Things that did work:
-flaxseed oil (technically any Omega-3 supplement. Fish oil and krill oil would also work BUT they are environmentally disastrous, cost more, and make your ENTIRE BEING smell of dead fish)
-acupuncture (but only when used once a week or so, longer breaks than two weeks just made it all worse so I had to give it up)
-drugs (NSAID, tricyclic with low-dose SSRI, painkillers)
-exercise (ballet and biking for me, please, y'all can do whatever)
Showing posts with label rheumatism. Show all posts
Showing posts with label rheumatism. Show all posts
Friday, February 26, 2016
Sunday, August 30, 2015
F this S
I'm in such a ballet funk. I really just don't want to go at all, right now. It has been a few months since work and life permitted regular twice-a-week class attendance, and I haven't taken pointe since May. And now that time is opening up? I just don't wanna! I am doing it because without ballet I am considerably less mobile and in a whole lot more pain. I'm just not enjoying myself at all.
One of the issues is that a new teacher has taken over two of my regular classes. And he's great, don't get me wrong. But it's different. Every teacher has a different style, and he isn't giving me the same experience that I have grown to expect and find comforting. He's teaching pointe, now, too, which makes me really hesitate to get back in to it. He really is a nice guy, and a good teacher, but...
sigh...
PS: trying to apply steroids directly to my scalp is not my favorite part of rheumatism. Wait, RPrin, you have a favorite part? Hell yes. All the best people have rheumatism. Me, my sister... my cat... uh... Lady Gaga...
One of the issues is that a new teacher has taken over two of my regular classes. And he's great, don't get me wrong. But it's different. Every teacher has a different style, and he isn't giving me the same experience that I have grown to expect and find comforting. He's teaching pointe, now, too, which makes me really hesitate to get back in to it. He really is a nice guy, and a good teacher, but...
sigh...
PS: trying to apply steroids directly to my scalp is not my favorite part of rheumatism. Wait, RPrin, you have a favorite part? Hell yes. All the best people have rheumatism. Me, my sister... my cat... uh... Lady Gaga...
Tuesday, November 11, 2014
Changing Seasons
In traditional Chinese medicine the closest translation of Rheumatoid Arthritis is fengshi bing, literally "wind-damp disease".
It's actually been fairly warm, here, despite the season. It will get cold for two days and then be 80* for the next solid week. The rheumy cat and I would just like it to settle on something so we can put the correct number of blankets on the bed and turn the heat on or off for more than six hours at a time. We wouldn't mind, really, if it wanted to be cold. We own three heating pads and an electric blanket, and this pile of old love letters scrounged out of my parent's attic ain't gonna burn itself.
It's actually been fairly warm, here, despite the season. It will get cold for two days and then be 80* for the next solid week. The rheumy cat and I would just like it to settle on something so we can put the correct number of blankets on the bed and turn the heat on or off for more than six hours at a time. We wouldn't mind, really, if it wanted to be cold. We own three heating pads and an electric blanket, and this pile of old love letters scrounged out of my parent's attic ain't gonna burn itself.
Sunday, September 28, 2014
Orally Fabulous, That's What
So, I had a bunch of crunky oral surgery last week, right? I mean... it was okay. I had nice "hypnotic" (I didn't even know that was a thing) drugs to make the time go faster, and they let me have a blanket and all... apparently my finger isn't a great place to continually check my pulse and I am oddly sensitive to penicillin, but hey. You learn something new every day.
Anyway. Things went pretty normally. After the first twelve hours or so I didn't need painkillers anymore. Which shocked me, honestly. But, yeah... so things have been pretty good. Except...
You know what the awesome part of auto-immune disorders is? The insanely out-of-proportion inflammatory response to EVERYTHING EVER. I imagine the inside of my mouth will eventually go back to normal... I hope I live to see that glorious future day... right now I am just happy that I only look a little bit like a chipmunk with seeds in his mouth (which was not the case yesterday). Can't worry too much about the fact that my gums look and feel a bit like the inside of a bike tire, right? I'm sure the feeling will come back eventually.
My surgeon is like "take 800 milligrams of motrin!" and I'm like "I can't take motrin, ibuprofen, naproxen, aspirin, relafen, or any other NSAID because I take a fairly high dose of Meloxicam every day and I would rather not have my kidneys fail, mmmkay?" You chop people's faces open every day, how is it you've never met someone with rheumatoid arthritis, before?
This sounds all bitchy but it's not, really! She did a lovely job chopping my face apart, I swear! And, I am not just saying that because she is going to chop it open again in four months and I am afraid for my life!
Anyway. Things went pretty normally. After the first twelve hours or so I didn't need painkillers anymore. Which shocked me, honestly. But, yeah... so things have been pretty good. Except...
You know what the awesome part of auto-immune disorders is? The insanely out-of-proportion inflammatory response to EVERYTHING EVER. I imagine the inside of my mouth will eventually go back to normal... I hope I live to see that glorious future day... right now I am just happy that I only look a little bit like a chipmunk with seeds in his mouth (which was not the case yesterday). Can't worry too much about the fact that my gums look and feel a bit like the inside of a bike tire, right? I'm sure the feeling will come back eventually.
My surgeon is like "take 800 milligrams of motrin!" and I'm like "I can't take motrin, ibuprofen, naproxen, aspirin, relafen, or any other NSAID because I take a fairly high dose of Meloxicam every day and I would rather not have my kidneys fail, mmmkay?" You chop people's faces open every day, how is it you've never met someone with rheumatoid arthritis, before?
This sounds all bitchy but it's not, really! She did a lovely job chopping my face apart, I swear! And, I am not just saying that because she is going to chop it open again in four months and I am afraid for my life!
Wednesday, September 3, 2014
You Mean I'm Too Young To Be This Sexy, Right?
How is your week going? Today I found out that my rheumy cat, who has been terribly sick over the past week, has pancreatitis on top of everything. Then I spent a futile couple of hours trying to find white wool at a local fabric store for this big ol' scary wedding thing I am designing. After that I got myself scheduled for a bunch of really awful oral surgery the week after I come home from vacation. Provided, of course, that the cat recovers quickly enough that we can GO on vacation...
Anyway.
As I was going through the preliminary crapola with the surgeon she glanced at my questionnaire and exclaimed "arthritis? You are too young to have arthritis!"
Which I get ALL the time.
Rheumatoid arthritis isn't even AT ALL the same thing as osteoarthritis. It doesn't care how old you are or how many grands jetes you have executed. It shouldn't even be called arthritis, really, the name is sort of a relic of a simpler (AKA: crappier) age when medical imaging wasn't common and accessible (not that it's all that accessible NOW. Says the woman who just had to pay out of pocket for a CT scan of one stupid tooth) and symptoms had to work as complete descriptions for diseases. These days we know that it's more like your immune system freaking the hell out and attacking itself because it is stupid and you can't explain anything to an immune system. They just won't listen.
Anyway, consider this your public service message for the day: Rheumatoid Arthritis doesn't give a damn how old you are. 6 year olds get diagnosed with it, for reals.
Anyway.
As I was going through the preliminary crapola with the surgeon she glanced at my questionnaire and exclaimed "arthritis? You are too young to have arthritis!"
Which I get ALL the time.
Rheumatoid arthritis isn't even AT ALL the same thing as osteoarthritis. It doesn't care how old you are or how many grands jetes you have executed. It shouldn't even be called arthritis, really, the name is sort of a relic of a simpler (AKA: crappier) age when medical imaging wasn't common and accessible (not that it's all that accessible NOW. Says the woman who just had to pay out of pocket for a CT scan of one stupid tooth) and symptoms had to work as complete descriptions for diseases. These days we know that it's more like your immune system freaking the hell out and attacking itself because it is stupid and you can't explain anything to an immune system. They just won't listen.
Anyway, consider this your public service message for the day: Rheumatoid Arthritis doesn't give a damn how old you are. 6 year olds get diagnosed with it, for reals.
Wednesday, March 5, 2014
Cats, rheumy stuff, extra classes
Sorry I haven't been writing a lot. The arthritis in my hands has been extra shitty for the past couple of weeks, spreading up out of my wrists and in to my fingers. Last night I had a dream that I lost the ability to articulate my right hand. It was pretty scary, guys.
Anyway. This is undoubtedly made worse by the stress in my life right now. My sick cats find new and exciting ways to send themselves to the emergency vet on a near weekly basis. My cat with the rheumatism-related digestive problem? She somehow came down with an infection so rare and so aggressive that she needs to be treated with an antibiotic the size of a tractor twice a day for at least two months. Yeah. And then the antibiotic is making her feel sick, which makes her not eat... which is not what a 9 pound (formerly 16 pound) cat really needs right now.
ANYWAY.
My ballet teacher recently told me that between now and the recital at the end of June, because I am helping out with costumes and such, that I can take as many classes as I want, gratis. Which sounds pretty freakin' awesome! At the beginning of June I will be going back to a crazy work schedule and won't be able to take any extra classes at all for three months, so now is a great time to cram in as many as I can. The only problem so far has been that I end up having to haul a cat to the vet on all my available afternoons. And I have to plan ahead, because on class days I can't take one of my medications in the morning (it makes me shaky and throws off my balance), so I am left little room for spontaneity.
OH how life never seems to work out the way we plan...
Anyway. This is undoubtedly made worse by the stress in my life right now. My sick cats find new and exciting ways to send themselves to the emergency vet on a near weekly basis. My cat with the rheumatism-related digestive problem? She somehow came down with an infection so rare and so aggressive that she needs to be treated with an antibiotic the size of a tractor twice a day for at least two months. Yeah. And then the antibiotic is making her feel sick, which makes her not eat... which is not what a 9 pound (formerly 16 pound) cat really needs right now.
ANYWAY.
My ballet teacher recently told me that between now and the recital at the end of June, because I am helping out with costumes and such, that I can take as many classes as I want, gratis. Which sounds pretty freakin' awesome! At the beginning of June I will be going back to a crazy work schedule and won't be able to take any extra classes at all for three months, so now is a great time to cram in as many as I can. The only problem so far has been that I end up having to haul a cat to the vet on all my available afternoons. And I have to plan ahead, because on class days I can't take one of my medications in the morning (it makes me shaky and throws off my balance), so I am left little room for spontaneity.
OH how life never seems to work out the way we plan...
Sunday, January 26, 2014
Cure
When you see this type of old advertisement you are tempted to laugh. Such silliness! Such gullibility! Oh, the things our ignorant forebears would believe! How little we knew about medicine then! How easily the predacious could market useless products to people who didn't know better!
But... was it really so different? There are still myriad "cures" of dubious efficacy on the market. You can't go to a drug store or turn on the TV without seeing some sort of snake oil pitch.
Is it really so hard to understand why people purchased these things? In a world full of advanced technology in medicine and health we STILL don't really understand some of the dreadful things that can happen to our bodies (or that they can do to themselves). In this modern age there are still countless people suffering that can't find the help they need to get through the day without pain. When you live in pain you are desperate for answers. Desperate for relief, for help. And? If the medical establishment isn't offering that to you? Is it so strange to look for your answers elsewhere?
Sometimes, while slogging through the research debunking yet another cure-all, I have to remind myself not to judge others too harshly for finding relief when and where they can. Not to roll my eyes (well, not where anyone would see me, anyway) when someone on pinterest posts countless herbal cures that have very little chance of helping. We are all searching for something, after all.
Tuesday, October 1, 2013
Raisins are Gross Enough Already
I was browsing Pinterest when I came across this:
Gin soaked raisins will cure your RA, guys! Or, you know, you could cut out the middle man and just DRINK HEAVILY. That oughta make you feel better. Aw yeah.
Sorry, sorry. But really? I will tell you what else will make your rheumatism feel better: competent medical care (I am working on that one, myself. BUT I hear it does wonders if you are lucky enough to find it).
Friday, July 5, 2013
Catting Around
I've been a bit scarce lately because life has been stressful to the point of overwhelming. Along with my ulcer, my Summer work schedule starting, and moving to a new apartment (which has neighbors that party loudly until about 5am on work nights. So great.) one of our cats has been deathly (not exaggerating) ill. She was our big fatty fat pants, but as soon as we moved she promptly stopped eating and dropped a third of her body weight within a few weeks. After many MANY trips to several different vets (and a whole damn lot of money. But whatever, we totally didn't want to buy a car anyway, right?) she finally came home with a feeding tube (temporary, thank god) and a diagnoses:
SHE HAS RHEUMATISM.
I will now give you a moment to let that sink in.
Done? Okay.
So, the good news is that it's totally treatable and when she starts a course of medication (to treat the inflammation in her digestive system) she should start feeling better pretty quickly. And this explains a lot. For example, she has always been slightly bulimic and has a pretty obvious lack of flexibility that we have often wondered about (cat rheumatoid arthritis?).
Now. Can we talk about how it took five thousand dollars and a team of five dedicated veterinary specialists two weeks to diagnose my cat's rheumatism... but after 8 or 9 years and countless visits to my human doctors Kaiser still refuses to even perform the tests necessary to properly diagnose my own rheumatism?
Ahem.
Yeah.
You would think that being a human being who can talk and describe symptoms and provide family history would make it easier, not harder.
You'd think.
(on a totally tangential ballet note: we were discussing grande pas de chat in class on Tuesday and someone translated it as "really big cat". So. Uhmm... there you go.)
SHE HAS RHEUMATISM.
I will now give you a moment to let that sink in.
Done? Okay.
So, the good news is that it's totally treatable and when she starts a course of medication (to treat the inflammation in her digestive system) she should start feeling better pretty quickly. And this explains a lot. For example, she has always been slightly bulimic and has a pretty obvious lack of flexibility that we have often wondered about (cat rheumatoid arthritis?).
Now. Can we talk about how it took five thousand dollars and a team of five dedicated veterinary specialists two weeks to diagnose my cat's rheumatism... but after 8 or 9 years and countless visits to my human doctors Kaiser still refuses to even perform the tests necessary to properly diagnose my own rheumatism?
Ahem.
Yeah.
You would think that being a human being who can talk and describe symptoms and provide family history would make it easier, not harder.
You'd think.
(on a totally tangential ballet note: we were discussing grande pas de chat in class on Tuesday and someone translated it as "really big cat". So. Uhmm... there you go.)
Tuesday, June 11, 2013
No.
No, foot. No no no no no. I do not need another body part to be in constant pain. Especially not my foot. Knock it the hell off, foot, I want to take pre-pointe on Thursday.
Labels:
annoying,
arthritis,
feet,
knock it off,
no,
pain,
prayer,
pre-pointe,
rheumatism,
stop it
Saturday, April 13, 2013
Health Stuff Blah
I'm feeling less dire about things today, but I decided to publish this post from a few days ago, anyway. For the sake of ... honesty? Completeness? Who else thinks the word "completeness" is stupid? It's one of those that should really have another tense. Like "completion" would sound better, but sadly it means something else. Sigh...
So, the horrible foot tendon thing that I was experiencing last week has (mostly) gone away. I babied it so much that I actually started getting foot cramps from lack of use! Silly. Silly and yet...
My shins splints are edging very slowly toward feeling better. I can jump! Sort of! (I mean, I am capable of jumping. Not that I am good at it.) It's been a very long and slow process to get to this point. And they still twinge at me when I try to do something like a ballotté, cabrioles, or hopping turns. Well... hmph. Hopping turns are dumb looking, anyway.
It's funny (not like "funny ha ha") the way I have become so utterly terrified of every new and unusual ache, pain, or click. I feel like at any moment I will "lose" another part of my body, but I never know which part, or when. Will it be my lower back, which has been aching for the past few days? Or will it be that pole of tightness down my achilles on cold mornings? My hips, that clonk and grab at me when lowering out of développé? Which part of me will fail completely enough to be in constant pain? And will it be a part I need in order to make it through my day? My work? My hobbies? I had to stop shooting my bow several years ago, will I have to stop dancing, next? Driving? Living in an upstairs apartment? When does it reach the breaking point, the point at which my doctors will believe me when I say I need help? When I finally test positive on their bloodwork will I be confined to a wheelchair?
Truth to tell, it's all kind of nerve-wracking.
I try not to think about it too much, or I'd never get anything accomplished.
So, the horrible foot tendon thing that I was experiencing last week has (mostly) gone away. I babied it so much that I actually started getting foot cramps from lack of use! Silly. Silly and yet...
My shins splints are edging very slowly toward feeling better. I can jump! Sort of! (I mean, I am capable of jumping. Not that I am good at it.) It's been a very long and slow process to get to this point. And they still twinge at me when I try to do something like a ballotté, cabrioles, or hopping turns. Well... hmph. Hopping turns are dumb looking, anyway.
It's funny (not like "funny ha ha") the way I have become so utterly terrified of every new and unusual ache, pain, or click. I feel like at any moment I will "lose" another part of my body, but I never know which part, or when. Will it be my lower back, which has been aching for the past few days? Or will it be that pole of tightness down my achilles on cold mornings? My hips, that clonk and grab at me when lowering out of développé? Which part of me will fail completely enough to be in constant pain? And will it be a part I need in order to make it through my day? My work? My hobbies? I had to stop shooting my bow several years ago, will I have to stop dancing, next? Driving? Living in an upstairs apartment? When does it reach the breaking point, the point at which my doctors will believe me when I say I need help? When I finally test positive on their bloodwork will I be confined to a wheelchair?
Truth to tell, it's all kind of nerve-wracking.
I try not to think about it too much, or I'd never get anything accomplished.
All my mad Google skillz couldn't locate the original source or credit for this image.
As always, if you are or know the creator please let me know so I can properly attribute it.
Tuesday, March 12, 2013
Who is the Patron Saint of Bloggers? There Must be One.
Warning: I don't know nothin' 'bout nothin' when it comes to religious razzmatazz. I just happened to run across a list of the patron saints of stuff tonight and I spent a few amused minutes searching for random afflictions and seeing what popped up. There is a saint of insect stings, guys. No, really.
Anyhow...
Did you know that there is a patron saint of rheumatism and rheumatoid arthritis? Actually there are SIX! This guy here has got you covered: he's the saint of rheumatism, arthritis, milliners, veterinarians, and blacksmiths among many (and I do mean many) other afflictions, professions, countries, and whatnot. I'm particularly taken with him because his name is usually translated as "James" but can also be translated as "Jakome" the name of a beloved childhood pet cat.
And, in case you were wondering, there are not one, not two, but three patron saints of dancers. Here is one of them, Saint Vitus. Who also, apparently, has a metal band and a neurological disorder named after him:
Anyhow...
Did you know that there is a patron saint of rheumatism and rheumatoid arthritis? Actually there are SIX! This guy here has got you covered: he's the saint of rheumatism, arthritis, milliners, veterinarians, and blacksmiths among many (and I do mean many) other afflictions, professions, countries, and whatnot. I'm particularly taken with him because his name is usually translated as "James" but can also be translated as "Jakome" the name of a beloved childhood pet cat.
And, in case you were wondering, there are not one, not two, but three patron saints of dancers. Here is one of them, Saint Vitus. Who also, apparently, has a metal band and a neurological disorder named after him:
I wonder if that makes him the patron saint of metal bands, too.
Tuesday, February 5, 2013
The kiss-off
I finally got my kiss-off letter from Kaiser. They basically just restated my entire complaint (replacing "I" with "you") and told me that I should consider going to hell. Which is exactly what I figured they would do. They did say they talked to the rheumatologist in question about it. If nothing else that means she knows that I think she's a useless waste of space. They also said I can get a second opinion if I want. As if I wasn't going to, anyway!
My next step is to get an appointment with another doctor, and to tell them in no uncertain terms what they need to do. Unfortunately, I am no longer willing to make these visits without someone else accompanying me as witness, and until my husband's job calms down enough that he can take an afternoon off without being yelled at for the next solid week I am out of luck.
For now I am just going to go jitter quietly in the corner for a few hours to work off this desperate adrenaline surge.
Ta.
My next step is to get an appointment with another doctor, and to tell them in no uncertain terms what they need to do. Unfortunately, I am no longer willing to make these visits without someone else accompanying me as witness, and until my husband's job calms down enough that he can take an afternoon off without being yelled at for the next solid week I am out of luck.
For now I am just going to go jitter quietly in the corner for a few hours to work off this desperate adrenaline surge.
Ta.
Tuesday, January 8, 2013
Complaining in Black and White
Well. I submitted my formal complaint against my rheumatologist tonight. I had been putting it off for months, now, because I just couldn't even put it in to words, but I am running out of time. I tried submitting it a couple of weeks ago but their website is so crummy that I had trouble with it and ended up having the entire thing erased without a trace before I could hit the send button. The new one has been saved to my hard drive, which is what I should have done in the first place but OH WELL.
The complaint is written with my usual brevity and clarity of purpose. Which is to say that the main complaint text pulls in at almost 800 words, almost all of which is back story. I did not use any words my granny would have been scandalized by. I tried to keep my snark down to a reasonable level, but you can still tell that I'm writing hot, and sadly unless I am given a few more YEARS to get over the problem then my anger is just going to keep coming in to the equation. I really did try.
Anyway, writing the complaint was really freakin' taxing, emotionally, and now I just dread getting a call from Kaiser's customer service reps telling me that it's all my fault and I should shut up. Honestly, I am considering responding to any phone calls by telling them I will only correspond in writing. Aside from making it easier for me to deal with because I won't be put on the spot it will leave a more absolute paper trail.
Now, I'm going to go nurse this stress headache and finish reading Pride and Prejudice. It's my first Jane Austen and I have got to say, this Mr. Darcy might be the thinking woman's lust object of the century (or, you know, last couple of centuries) but a douchebag by any other name is still a douchebag.
The complaint is written with my usual brevity and clarity of purpose. Which is to say that the main complaint text pulls in at almost 800 words, almost all of which is back story. I did not use any words my granny would have been scandalized by. I tried to keep my snark down to a reasonable level, but you can still tell that I'm writing hot, and sadly unless I am given a few more YEARS to get over the problem then my anger is just going to keep coming in to the equation. I really did try.
Anyway, writing the complaint was really freakin' taxing, emotionally, and now I just dread getting a call from Kaiser's customer service reps telling me that it's all my fault and I should shut up. Honestly, I am considering responding to any phone calls by telling them I will only correspond in writing. Aside from making it easier for me to deal with because I won't be put on the spot it will leave a more absolute paper trail.
Now, I'm going to go nurse this stress headache and finish reading Pride and Prejudice. It's my first Jane Austen and I have got to say, this Mr. Darcy might be the thinking woman's lust object of the century (or, you know, last couple of centuries) but a douchebag by any other name is still a douchebag.
Thursday, November 29, 2012
Acupuncture: Step Two
So today I had my orientation and introduction to acupuncture class at Kaiser. Waaaaay the hell away in another city, because that is the only place they do it, apparently. I drove there in the absolutely POURING rain and gusty wind, on unfamiliar roads. I took the freeway there, and it was raining so hard I couldn't see, so on the way back I took surface streets. Which was just as bad because everyone insisted on driving exaaaaaactly 30mph. Which is basically the sweet spot for hydroplaning. I cranked up my stereo and powered through, though.
Was it worth it? Oh, hell no. But that isn't too surprising, right? The orientation class basically consisted of forty people trying to cram in to a conference room that was designed for about twenty people. Then we all watched a YouTube video together. And then I sat there and thought about how I am pretty sure that this building is the one that my pediatrician's office was in, back when I was a kid. And, what ever happened to good old Dr. Koch, anyway? He was pretty nice. And this building! What a perfect example of ... uh ... I guess I will call it "Industrial Prairie" architecture. Which is to say it is obviously inspired by Frank Lloyd Wright except without being actually inspired. 1960s architecture at it's most squat and grey... and half-listened to an obviously flustered and unprepared clinician answer bitchy and/or snarky questions from aging baby boomers with entitlement issues about how long it takes to get an appointment.
What did I learn? Well, I learned that Kaiser's acupuncture department is something of a cruel joke. They have an acupuncture department but they don't actually want you to use it. After three appointments they decide if it's helping or not. If not, no harm no foul, you go on to find something else to try. If it does help you can come back with limited appointments for about a year. Then you are on your own. I guess I am glad I even have the opportunity to try it out for cheap. If it helps maybe I can try finding someone local that isn't too woo-woo for me. Though goodness knows how I would ever be able to afford it.
I still think they could have saved us all a lot of trouble by emailing us a link to the stupid video and maybe mailing a small packet of the paperwork they handed out (they send out appointment reminders anyway, right?). On the way there and back the weather probably killed a few of us off, though, so maybe that was their plan all along...
Was it worth it? Oh, hell no. But that isn't too surprising, right? The orientation class basically consisted of forty people trying to cram in to a conference room that was designed for about twenty people. Then we all watched a YouTube video together. And then I sat there and thought about how I am pretty sure that this building is the one that my pediatrician's office was in, back when I was a kid. And, what ever happened to good old Dr. Koch, anyway? He was pretty nice. And this building! What a perfect example of ... uh ... I guess I will call it "Industrial Prairie" architecture. Which is to say it is obviously inspired by Frank Lloyd Wright except without being actually inspired. 1960s architecture at it's most squat and grey... and half-listened to an obviously flustered and unprepared clinician answer bitchy and/or snarky questions from aging baby boomers with entitlement issues about how long it takes to get an appointment.
What did I learn? Well, I learned that Kaiser's acupuncture department is something of a cruel joke. They have an acupuncture department but they don't actually want you to use it. After three appointments they decide if it's helping or not. If not, no harm no foul, you go on to find something else to try. If it does help you can come back with limited appointments for about a year. Then you are on your own. I guess I am glad I even have the opportunity to try it out for cheap. If it helps maybe I can try finding someone local that isn't too woo-woo for me. Though goodness knows how I would ever be able to afford it.
I still think they could have saved us all a lot of trouble by emailing us a link to the stupid video and maybe mailing a small packet of the paperwork they handed out (they send out appointment reminders anyway, right?). On the way there and back the weather probably killed a few of us off, though, so maybe that was their plan all along...
Wednesday, October 3, 2012
Rheumatologist FAIL
This post is going to take me a long time to write (it's taken a full 24 hours to even work up to it) and not only because I have to type the whole thing with one hand (turns out? I am pretty quick at it, which probably means I mostly type one-handed anyway. Sorry, Mavis Beacon.). I will have to write it and then let it settle for a while and THEN go back over it to remove most of the swear words (I am drawing the limit at six uses of the word "fuck", but it going to be an editing nightmare.) So, without further ado...
I visited the rheumatologist again, yesterday.
The first time I went, three years ago, they put me through a battery of blood tests and then brought me in to the office to poke at me and basically tell me to stop whining and suck it up. I avoided them for as long as I could, but the past three years has brought such a rapid increase in symptoms (and changes in my medical history, for example I now have evidence of a family history of rheumatic conditions) and such a flare-up of the attendant inflammation that my primary care doctor has been left feeling helpless and annoyed and my physical therapist has given up on me entirely until my inflammatory processes can be controlled with some efficiency. So. I went back. They put me through the exact same blood tests again which, aside from turning up a possible urinary tract infection (yay?), showed no changes from last time. But this is Kaisers standard operating procedure. After all, repeatedly doing the same thing and expecting different results is the definition of sanity, right?... So, there was hardly any point in going to this appointment, anyway.
You see, with Kaiser, if there isn't a test result to point to then you are not getting a diagnoses or treatment unless your doctor is strong enough to demand it and, here's the kicker, gives a damn. It's what Kaiser is famous for. It's why they are so poorly thought of in the general medical community. But, anyway. My sister, you see, did not test positive for anything, either. They had to do an MRI to find her inflammation and bone fusion. Before that, they just didn't know what to make of her. Now, I am not saying I have the same thing she does, but I AM saying that some actual effort needs to be extended by your doctor, or your illness can slip right through the cracks. Luckily, she does not have Kaiser.
So I went to my appointment. My husband came with me this time, I don't think he believed me when I said that this rheumatologist was horrible and would just fob me off no matter what I said. Well. He knows now. I got there and filled out the forms : how many of these symptoms do you have (lots)? Could you walk three miles if you had to (no)? That sort of thing. Then the doctor came in. Now, let me make this as clear as possible, she had absolutely no intention of helping me, regardless of what I said. She refused to listen to my personal history, family history, or symptoms. She pointed straight to my blood test and said "look, it says that you don't have anything." That was lie number one. There are seronegative auto-immune disorders. And some that CAN be seropositive can ALSO manifest as seronegative. There are probably close to a hundred conditions recognized as rheumatoid-related. Six blood tests is not going to detect them all.
She then made me take off my wrist brace and proceeded to pull and manipulate my SPRAINED WRIST in to several unnatural positions "See? You are mobile. You don't have any inflammation. Anywhere. It's just pain. Nothing physical."
Lie number two. I think we all know that I was sent to her in the first place because I have CRAZY inflammation that my PC doctor can't figure out how to control. Regardless of the pain my body is constantly stiff, my joints popped audibly as she maneuvered my legs. My knees screamed as she bent them beyond their limit.
Then she looked briefly at the questionnaires I had just filled out and said, and I am not exaggerating, "There is nothing I can do for you. You probably just have depression"
It was at this point that I decided she wasn't even trying and didn't give half a damn about anything I said or did. You know what? Maybe sometimes I am depressed. Because I HAVE BEEN IN PAIN EVERY DAY OF MY LIFE FOR THE PAST EIGHT YEARS. That is pretty mother fucking depressing.
My husband asked "what about doing an MRI to see if there is something we're missing"
And here, my friends, is where she pulled out her most egregious lie, yet. "MRIs only show you ligaments. They don't show anything else. They don't show inflammation. Blood tests are the only way to tell if you have inflammation."
Now. I suggest, if you don't know anything about MRIs already, that you go check it out online. Go ahead. Wikipedia it or something. I will wait.
Done?
Okay. She finished up saying "well, sure, you have Reynaud's syndrome, but that doesn't mean anything. You are totally fine, otherwise." LIE. Reynaud's is a rheumatic condition that is usually secondary to other, more serious conditions. For example: Lupus and rheumatoid arthritis. But, oh no! Let's not even contemplate the possibility of seronegative RA. Let's just tell the person who is in chronic pain to the point of no longer being able to work full time THAT SHE IS CRAZY and it's ALL IN HER HEAD. What an amazing treatment plan! Way to go, fucking idiot of a jerk of a complete twat of a doctor! Yay! Kudos for you! Another difficult case successfully deflected and another patient so disgusted and intimidated that she'll probably never get adequate treatment! WAY TO FUCKING GO YOU FUCKING FUCK.
I would file a complaint against this woman if I thought it would do any good. I might STILL file a complaint against her. It won't impact her much and it won't change the quality of my care through this HMO. But, I might do it anyway. Just so that she knows. Feels the ice cube of my distaste dripping down her proverbial underpants.
BITCH.
I visited the rheumatologist again, yesterday.
The first time I went, three years ago, they put me through a battery of blood tests and then brought me in to the office to poke at me and basically tell me to stop whining and suck it up. I avoided them for as long as I could, but the past three years has brought such a rapid increase in symptoms (and changes in my medical history, for example I now have evidence of a family history of rheumatic conditions) and such a flare-up of the attendant inflammation that my primary care doctor has been left feeling helpless and annoyed and my physical therapist has given up on me entirely until my inflammatory processes can be controlled with some efficiency. So. I went back. They put me through the exact same blood tests again which, aside from turning up a possible urinary tract infection (yay?), showed no changes from last time. But this is Kaisers standard operating procedure. After all, repeatedly doing the same thing and expecting different results is the definition of sanity, right?... So, there was hardly any point in going to this appointment, anyway.
You see, with Kaiser, if there isn't a test result to point to then you are not getting a diagnoses or treatment unless your doctor is strong enough to demand it and, here's the kicker, gives a damn. It's what Kaiser is famous for. It's why they are so poorly thought of in the general medical community. But, anyway. My sister, you see, did not test positive for anything, either. They had to do an MRI to find her inflammation and bone fusion. Before that, they just didn't know what to make of her. Now, I am not saying I have the same thing she does, but I AM saying that some actual effort needs to be extended by your doctor, or your illness can slip right through the cracks. Luckily, she does not have Kaiser.
So I went to my appointment. My husband came with me this time, I don't think he believed me when I said that this rheumatologist was horrible and would just fob me off no matter what I said. Well. He knows now. I got there and filled out the forms : how many of these symptoms do you have (lots)? Could you walk three miles if you had to (no)? That sort of thing. Then the doctor came in. Now, let me make this as clear as possible, she had absolutely no intention of helping me, regardless of what I said. She refused to listen to my personal history, family history, or symptoms. She pointed straight to my blood test and said "look, it says that you don't have anything." That was lie number one. There are seronegative auto-immune disorders. And some that CAN be seropositive can ALSO manifest as seronegative. There are probably close to a hundred conditions recognized as rheumatoid-related. Six blood tests is not going to detect them all.
She then made me take off my wrist brace and proceeded to pull and manipulate my SPRAINED WRIST in to several unnatural positions "See? You are mobile. You don't have any inflammation. Anywhere. It's just pain. Nothing physical."
Lie number two. I think we all know that I was sent to her in the first place because I have CRAZY inflammation that my PC doctor can't figure out how to control. Regardless of the pain my body is constantly stiff, my joints popped audibly as she maneuvered my legs. My knees screamed as she bent them beyond their limit.
Then she looked briefly at the questionnaires I had just filled out and said, and I am not exaggerating, "There is nothing I can do for you. You probably just have depression"
It was at this point that I decided she wasn't even trying and didn't give half a damn about anything I said or did. You know what? Maybe sometimes I am depressed. Because I HAVE BEEN IN PAIN EVERY DAY OF MY LIFE FOR THE PAST EIGHT YEARS. That is pretty mother fucking depressing.
My husband asked "what about doing an MRI to see if there is something we're missing"
And here, my friends, is where she pulled out her most egregious lie, yet. "MRIs only show you ligaments. They don't show anything else. They don't show inflammation. Blood tests are the only way to tell if you have inflammation."
Now. I suggest, if you don't know anything about MRIs already, that you go check it out online. Go ahead. Wikipedia it or something. I will wait.
Done?
Okay. She finished up saying "well, sure, you have Reynaud's syndrome, but that doesn't mean anything. You are totally fine, otherwise." LIE. Reynaud's is a rheumatic condition that is usually secondary to other, more serious conditions. For example: Lupus and rheumatoid arthritis. But, oh no! Let's not even contemplate the possibility of seronegative RA. Let's just tell the person who is in chronic pain to the point of no longer being able to work full time THAT SHE IS CRAZY and it's ALL IN HER HEAD. What an amazing treatment plan! Way to go, fucking idiot of a jerk of a complete twat of a doctor! Yay! Kudos for you! Another difficult case successfully deflected and another patient so disgusted and intimidated that she'll probably never get adequate treatment! WAY TO FUCKING GO YOU FUCKING FUCK.
I would file a complaint against this woman if I thought it would do any good. I might STILL file a complaint against her. It won't impact her much and it won't change the quality of my care through this HMO. But, I might do it anyway. Just so that she knows. Feels the ice cube of my distaste dripping down her proverbial underpants.
BITCH.
Tuesday, August 14, 2012
I live in central CA, you grow tomatoes here or they kick you out
So my (also rheumy) sister has had some luck on an anti-inflammatory diet, especially going gluten-free. And I can't really turn away anything that might even possibly provide some help with this shit (especially after my doctor informed me that my absolutely crappy HMO does not cover topical anti-inflammatory agents even when there is no other viable option. But that is another post. In fact there could just be a long post called "KAISER CAN KISS MY ASS" and the body of the post would read "FUCKYOUKAISERYOUCANSOKISSMYASSYOUMOTHERFUCKINGRATBASTARDS" over and over again). So, I have been looking in to it.
Basically, so far as I can tell, an anti-inflammatory diet means you stop eating everything that you enjoy and start eating nothing but plain salmon with plain steamed broccoli for every meal (and then you die of mercury poisoning BUT WHATEVER).
So I look up information about this stuff and and one source says you aren't supposed to eat:
Red meat. Which is fine because I don't eat read meat anyway and haven't since I was about 15.
Sausages or lunch meat or salami, etc. Basically all the processed meats that taste delicious in a sammich.
Sugar. All of it that isn't in a fruit, pretty much.
Gluten. This includes almost everything processed or packaged as well as every single baked good you ever loved.
Tomatoes. Oh my god, guys. Shit just got REAL.
Potatoes. WHAT?
Soy products. All this excitement and I can't even eat tofu? Seriously? Are you going to take rice away from me, too?
RICE. But only white rice, which leaves me wild and brown rice, which I like but my husband won't touch with a stick. But hey, at least I can have rice cakes with peanut butter, right?
PEANUTS and SUNFLOWER SEEDS.
And then I look at some other source and they are saying the exact opposite of everything that the first source said and then... Okay, you know what? Go to hell, anti-inflammatory diet.
But, I am trying to cut back on some of the gluten in my life. I can do that. Right now I am saying that I am "watching" my gluten intake. For example, yesterday I "watched" myself eat half a box of shortbread cookies and a significant amount of pizza.
*Sigh*
So, my goal is not to worry too much about every single forbidden thing, and not to eliminate gluten from my life entirely but to at least take it down a notch and see what happens. I know I am doing it wrong. But, look. I can substitute a rice cake for toast. No problem. But I CAN'T substitute a rice cake for a doughnut, you know? That can pretty much go to hell.
Basically, so far as I can tell, an anti-inflammatory diet means you stop eating everything that you enjoy and start eating nothing but plain salmon with plain steamed broccoli for every meal (and then you die of mercury poisoning BUT WHATEVER).
So I look up information about this stuff and and one source says you aren't supposed to eat:
Red meat. Which is fine because I don't eat read meat anyway and haven't since I was about 15.
Sausages or lunch meat or salami, etc. Basically all the processed meats that taste delicious in a sammich.
Sugar. All of it that isn't in a fruit, pretty much.
Gluten. This includes almost everything processed or packaged as well as every single baked good you ever loved.
Tomatoes. Oh my god, guys. Shit just got REAL.
Potatoes. WHAT?
Soy products. All this excitement and I can't even eat tofu? Seriously? Are you going to take rice away from me, too?
RICE. But only white rice, which leaves me wild and brown rice, which I like but my husband won't touch with a stick. But hey, at least I can have rice cakes with peanut butter, right?
PEANUTS and SUNFLOWER SEEDS.
And then I look at some other source and they are saying the exact opposite of everything that the first source said and then... Okay, you know what? Go to hell, anti-inflammatory diet.
But, I am trying to cut back on some of the gluten in my life. I can do that. Right now I am saying that I am "watching" my gluten intake. For example, yesterday I "watched" myself eat half a box of shortbread cookies and a significant amount of pizza.
*Sigh*
So, my goal is not to worry too much about every single forbidden thing, and not to eliminate gluten from my life entirely but to at least take it down a notch and see what happens. I know I am doing it wrong. But, look. I can substitute a rice cake for toast. No problem. But I CAN'T substitute a rice cake for a doughnut, you know? That can pretty much go to hell.
Monday, June 25, 2012
Big Week
Last week felt like a big week for me.
Thursday I had my long-awaited and much-anticipated appointment with my doctor. I explained what the situation was with my knees and while the whole thing is basically tied in to the rheumatism (everything is tied in to the rheumatism, including the stupid little skin rash I have developed) he thinks it looks like something called Patello-Femoral Syndrome (PFS). It basically means that I have to keep taking anti-inflammatory drugs (which I couldn't get through a day without, anyway) and start going back to a physical therapist to try to get my leg muscles even stronger to stabilize the connective tissues in my knees. I always forget why I like my doctor, so a visit every year is important just so I don't go on a rampage and kill everyone at Kaiser. My doctor has a very good bedside manner (and if you know Kaiser then you know how rare that can be) and is always willing to take longer than the allotted ten minutes to talk to me. He might not always hit the nail on the head, but at this point I think he's the best I am going to do while using this HMO. We looked at my x-rays (from way back in November) together so I could actually see what was going on in there structurally. The bones look good, still smooth and round in the places they need to be smooth and round. Connective tissues do not show up on x-rays so the rest of it is kind of conjecture. Looking at the symptoms, though, the diagnoses is at least closer to the mark than anything else we've tried in the past ten months.
Anyway, the good news is that (as of November) there didn't seem to be a leap toward degeneration in the joint. Only time will tell, but there it is. I can deal with pain. What I can't deal with is fusing in to a solid lump that cannot move at all anymore. They will undoubtedly tell me not to do a lot of jumps in ballet class. But I will cross that bridge when I get to it.
Friday's class was terribly small. There were only four of us for barre, and then just three for center work! It felt very strange. The Friday class is usually packed beyond capacity so I am not sure what was going on there. Summer vacations? Because we were so low on students the class was extremely intense and exhausting. We did grands jetés, which was fun and new, and I think I may be getting very slightly better at chaînés turns, though they are still sort of hit and miss. I asked about class schedules and my teacher thinks I should try out the level 3-5 class (because I can't make it to the regular level 3 class until September) and see what I think. I may give it a shot, but probably not until late in July. Until then I am totally happy where I am and still feel challenged enough not to be bored.
Thursday I had my long-awaited and much-anticipated appointment with my doctor. I explained what the situation was with my knees and while the whole thing is basically tied in to the rheumatism (everything is tied in to the rheumatism, including the stupid little skin rash I have developed) he thinks it looks like something called Patello-Femoral Syndrome (PFS). It basically means that I have to keep taking anti-inflammatory drugs (which I couldn't get through a day without, anyway) and start going back to a physical therapist to try to get my leg muscles even stronger to stabilize the connective tissues in my knees. I always forget why I like my doctor, so a visit every year is important just so I don't go on a rampage and kill everyone at Kaiser. My doctor has a very good bedside manner (and if you know Kaiser then you know how rare that can be) and is always willing to take longer than the allotted ten minutes to talk to me. He might not always hit the nail on the head, but at this point I think he's the best I am going to do while using this HMO. We looked at my x-rays (from way back in November) together so I could actually see what was going on in there structurally. The bones look good, still smooth and round in the places they need to be smooth and round. Connective tissues do not show up on x-rays so the rest of it is kind of conjecture. Looking at the symptoms, though, the diagnoses is at least closer to the mark than anything else we've tried in the past ten months.
Anyway, the good news is that (as of November) there didn't seem to be a leap toward degeneration in the joint. Only time will tell, but there it is. I can deal with pain. What I can't deal with is fusing in to a solid lump that cannot move at all anymore. They will undoubtedly tell me not to do a lot of jumps in ballet class. But I will cross that bridge when I get to it.
Friday's class was terribly small. There were only four of us for barre, and then just three for center work! It felt very strange. The Friday class is usually packed beyond capacity so I am not sure what was going on there. Summer vacations? Because we were so low on students the class was extremely intense and exhausting. We did grands jetés, which was fun and new, and I think I may be getting very slightly better at chaînés turns, though they are still sort of hit and miss. I asked about class schedules and my teacher thinks I should try out the level 3-5 class (because I can't make it to the regular level 3 class until September) and see what I think. I may give it a shot, but probably not until late in July. Until then I am totally happy where I am and still feel challenged enough not to be bored.
Sunday, June 17, 2012
Doctor's Appointment: Preparation
Well, I have an appointment with my primary care doctor this week. There are a couple of things I want to discuss with him, and the biggest is (probably quite obviously) my knees. I have learned from a lifetime of Kaiser's brand of medical care, and so I am spending a little time tonight brushing up on my anatomy and such. Seriously guys, patients should not have to do this. I am capable of it, you are probably capable of it, but some people aren't. And those people will just slip through the cracks in the system. It's rather frustrating.
Anyhow, I have discovered (this was a huge surprise to me, though it really shouldn't have been) that tendonitis can be caused by rheumatism. I don't know why it didn't occur to me before. Rheumatism equals inflammation, and tendonitis is definitely based on that same mechanism.
Anyway, the good news is that I have some ammunition to take to my appointment, as well as a ten month record of trying and failing the regular first-line treatment. So, maybe I will get some suggestions?
I have very little faith in the medical establishment right now.
Ow. TMI alert, but I am hurting a lot right now, in my feminine regions. The timing is all wonky and totally wrong which means I am probably just having a bout of mittelschmerz, which I have experienced off and on since I was a teenager. It's been more off than on since my mid twenties but it used to be clockwork-regular. It occurs to me, at this late hour, that mittelschmerz is an inflammatory condition of unknown origin. Just like every other damn thing that is wrong with me. Why don't doctors look at the big picture and tally up all these things once in a while?
Sigh...
Anyway. No feeling sorry for myself! I have a new ballet classmate with artificial hips! Talk about moxie!
Anyhow, I have discovered (this was a huge surprise to me, though it really shouldn't have been) that tendonitis can be caused by rheumatism. I don't know why it didn't occur to me before. Rheumatism equals inflammation, and tendonitis is definitely based on that same mechanism.
Anyway, the good news is that I have some ammunition to take to my appointment, as well as a ten month record of trying and failing the regular first-line treatment. So, maybe I will get some suggestions?
I have very little faith in the medical establishment right now.
Ow. TMI alert, but I am hurting a lot right now, in my feminine regions. The timing is all wonky and totally wrong which means I am probably just having a bout of mittelschmerz, which I have experienced off and on since I was a teenager. It's been more off than on since my mid twenties but it used to be clockwork-regular. It occurs to me, at this late hour, that mittelschmerz is an inflammatory condition of unknown origin. Just like every other damn thing that is wrong with me. Why don't doctors look at the big picture and tally up all these things once in a while?
Sigh...
Anyway. No feeling sorry for myself! I have a new ballet classmate with artificial hips! Talk about moxie!
Wednesday, May 9, 2012
Is it a bird? A plane? A ninety year old lady? No! It's INFLAMO-WOMAN!
So this is how I began this blog post:
"The theme for the week is "inflamo-woman". Or no, that sounds more like a super hero. A lesser known Avenger who mostly just whines so much that the bad guys give up and go home feeling a bit annoyed and slightly depressed.
I think every time..."
And then I had to stop.
Because then this happened:
"The theme for the week is "inflamo-woman". Or no, that sounds more like a super hero. A lesser known Avenger who mostly just whines so much that the bad guys give up and go home feeling a bit annoyed and slightly depressed.
I think every time..."
And then I had to stop.
Because then this happened:
Dun-duh-dun!
Inflamo-Woman!
Mightily she faces down evil doers with her formidable powers!
The omnipresent wrist braces OF JUSTICE!
The grocery store knee brace OF POWER!
The unflattering leotard that hits at juuuust the wrong place on her butt OF ... UH.... uhm... POWER again because I can't think of anything else!
SEE how she defeats her enemies while wearing pink tights and ballet slippers!
MARVEL at her ability to have at least three things wrong with her on any given day!
BAM! POW! WOP!
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