Just started on this series by Sandy Szwarc at Junkfood Science, and part one is a fascinating post about early fat activism and - surprise! - how feeling bad about being fat could be worse for you than actually being fat.
Pay special attention to the story of the Rosetans, a group of Italian immigrants in Pennsylvania in the 1960s. My goodness, how I'd love to go back in time and spend a good week or two with those people in their warm, wonderful community: smelling the men's cigars and drinking red wine, eating rich Italian foods and defying organized medicine... it sounds like heaven to me!
Seriously, read the article. I know I'm a little late in getting to it, but I've got a lot of catching up to do. So glad I started with JFS.
Short note on the MS front: Did a Medrol dose-pak, then continued on prednisone at half the dose I'm used to. (Two weeks to go.) I'm doing alright, but I'm tired all the time. That's better than my usual time with prednisone, though, being ravenous and restless. But I'm keeping up on my Copaxone like a good Teva Neuroscience fangirl and I know things will get better.
Take it easy, everyone.
Tuesday, February 26, 2008
Friday, February 15, 2008
Hard to stick?
Spent last week doing another Medrol infusion to kick this exacerbation. The steroid worked amazingly well this time, both physically and mentally, and not in small part due to a very understanding IV technician (he's actually the director of nursing) who treated me with kindness and respect. (And didn't tell me to fix my valve-y veined arms by losing weight or something. I'd have been like, "Haha, I dropped 15 pounds being sick already so there!" Well, not really, but I fantasize about saying stuff like that to less awesome people. Seriously, he was a dream.)
So, I have a question for all of you fat folks who spend time at the doctor's or the hospital - have you ever been told, before anyone's even looked at your veins or touched your skin, whether or not you'll be "hard to stick"? I had an experience with that this time around and it puzzled me - I've never had trouble giving blood, nor been told I have "rolling" veins or anything of the sort - and yet I was deemed troublesome before I'd even gone down to the lab! (They actually called my house to find this out - wtf?)
Why would one look at a fat person and automatically deem them difficult in the blood department? I mean, if you've got enough training to take someone's blood, shouldn't you also have enough to know that veins typically aren't smushed under three inches of impermeable fat or whatever it is you think you're looking at?
(Then again, who am I kidding? Read stories at First Do No Harm and see what doctors get away with. It's horrifying.)
So does anyone have anything similar to share? I asked a fat friend of mine and said she'd never experienced it herself, but would be mighty pissed if it had happened to her.
Thanks for reading and take care!
So, I have a question for all of you fat folks who spend time at the doctor's or the hospital - have you ever been told, before anyone's even looked at your veins or touched your skin, whether or not you'll be "hard to stick"? I had an experience with that this time around and it puzzled me - I've never had trouble giving blood, nor been told I have "rolling" veins or anything of the sort - and yet I was deemed troublesome before I'd even gone down to the lab! (They actually called my house to find this out - wtf?)
Why would one look at a fat person and automatically deem them difficult in the blood department? I mean, if you've got enough training to take someone's blood, shouldn't you also have enough to know that veins typically aren't smushed under three inches of impermeable fat or whatever it is you think you're looking at?
(Then again, who am I kidding? Read stories at First Do No Harm and see what doctors get away with. It's horrifying.)
So does anyone have anything similar to share? I asked a fat friend of mine and said she'd never experienced it herself, but would be mighty pissed if it had happened to her.
Thanks for reading and take care!
Monday, February 4, 2008
Show Me! (Your fat blogs!)
Okay, I know I just posted, but I figure it's time to make up for all that absence with this piece of news:
I received the following message from a lady through my MySpace profile, and we have exchanged pleasant emails since. She's interested in interviewing fat bloggers from Missouri. As far as I know, I'm the only one. But she gave me permission to post her message here for others to see, just in case I'm joined by other Missourians about whom I wasn't aware!
So come on you guys! Show Me your fat blogs and send this lady a message if you're interested.
(message has been slightly edited to preserve some of the writer's privacy.)
So what do you all think? I've agreed to it, hoping to shed some light on my feelings about being fat and how this community has inspired me to talk about them. But... I'm not so sure about the phone or AIM thingy. I'm shy when I get a ring, but typing is troublesome. The good thing is, a week ago Ms. Raymond let me know that she'd like to get her article out within a month. So I guess I have some time to get brave, exercise my fingers, and hunt down some MO residents who feel the same way I do.
So hop to it! I'm gonna keep saying "Show-Me your fat blogs!" until someone responds. And that sounds silly, so if you wanna stop it, you know what to do.
I received the following message from a lady through my MySpace profile, and we have exchanged pleasant emails since. She's interested in interviewing fat bloggers from Missouri. As far as I know, I'm the only one. But she gave me permission to post her message here for others to see, just in case I'm joined by other Missourians about whom I wasn't aware!
So come on you guys! Show Me your fat blogs and send this lady a message if you're interested.
(message has been slightly edited to preserve some of the writer's privacy.)
My name is Rose Raymond. I am a reporter for the Columbia Missourian, a community newspaper based in Columbia, MO. In response to the recent national media coverage on fat acceptance blogs, we are interested in doing an article about fat acceptance blogs and websites that are written by Missouri residents.
I have seen your 'theendomorph' blog and am very interested in interviewing you via phone or AIM about your blog. Also, if you know of any other bloggers from Missouri that run fat acceptance blogs, it would be great if you could pass along their URLs. Thanks a lot for your time and help. I look forward to hearing from you.
Sincerely,
Rose Raymond
roseraymond@gmail.com
So what do you all think? I've agreed to it, hoping to shed some light on my feelings about being fat and how this community has inspired me to talk about them. But... I'm not so sure about the phone or AIM thingy. I'm shy when I get a ring, but typing is troublesome. The good thing is, a week ago Ms. Raymond let me know that she'd like to get her article out within a month. So I guess I have some time to get brave, exercise my fingers, and hunt down some MO residents who feel the same way I do.
So hop to it! I'm gonna keep saying "Show-Me your fat blogs!" until someone responds. And that sounds silly, so if you wanna stop it, you know what to do.
The exacerbation, Copaxone again (!), and fat disability aids!
Okay, everybody - here's that up-and-coming post I was talking about before. But first of all, some blog maintenance news: I've made comments available to registered users only. I've gotten some lovely and warm wishes (and help!) from several kind people. Unfortunately, I've also received some trolling from people who don't wish to use their names when leaving nasty comments.
I'm not trying to shut anyone out - I love hearing from all of you! - but before you reply, can you please take a moment and register with Blogger? It doesn't take much time or energy and you can use it for all sorts of things - you could even start your own blog!
Again, I'm sorry if anyone feels excluded by this. Thanks to all of you for your kind comments (some of which I haven't replied to in months - bad Endomorph!). Now, on to my post.
As I said the last time, I've been in pretty rotten straits as far as my health goes. I've also been feeling out of place in the online community lately. It's not the fault of anybody specific, or any specific topic - I've been withdrawing from everything. It's the fault of being sick, really.
In short - or not so short, as it turns out - I have had, and am still having, a major exacerbation. The period of time I had to spend off of Copaxone in October threw me down into a place that I've never experienced before. I was worse than I'd ever been - worse even than before I was diagnosed, which is when the symptoms I still have first developed, and which was the first time I couldn't walk. All of my usual symptoms became worse, like my regular exacerbations, but then it got harder. I lost the ability to walk and to get out of bed - even just to sit up - by myself. My right leg became lame and useless. I went from cane to walker to wheelchair through November, when I took my first Tysabri infusion.
I didn't expect Tysabri to fix me overnight, but I hoped it would make a difference, since my body had become so sick so I could take it and hopefully get some help. I thought that it could surely clean up something that had just happened, if I hoped hard enough.
But it didn't. At the end of November, I told my neuro to put me back on Copaxone. He was disappointed - kept asking me to try one more month or so. But I told him I couldn't afford one more month of not knowing if it would affect me positively, and he wrote me a prescription. I was so happy.
But the hardship didn't end there. I knew I'd have to wait some time before restarting Copaxone, but I didn't expect a three-month wash out period. No one - not my doctor, not the MS specialist who recommended a pulse of Tysabri in the first place ("A month off Copaxone, three to six of Tysabri, then a month off again and back to Copaxone"), and not one of the many Tysabri reps I spoke to during this time - told me about that.
Like I said, I expected a waiting period like the one that required me to stop Copaxone. I blame myself for this - I should have asked more questions - but I still wonder why no one told me this. I always mentioned I intended to go back on Copaxone.
So I'd been stuck in this place since I stopped Copaxone and it only got worse - I was able to get back to a walker again, but in the last month I'd slid down the little bit that I managed to climb. Back in the wheelchair, not being able to use the right leg again, and whatever dexterity I gained in my hands is gone again. Plus a bout of optic neuritis causing my right eye to give double vision, followed by some scary misbehavior with my bladder, for which I'm going to see a urologist soon.
Anyway, I won't be bitter any longer - I went back on Copaxone on the 24th and I'm glad to have it. And fortunately, last Monday I went on a high dose of prednisone, followed by going in to the hospital for Solu-Medrol again today. (This is my fifth time.) I'm not so big on optimism, but I have a lot of good feelings that the reintroduction of the Copaxone, plus the Solu-Medrol, plus the prednisone taper that'll follow this week will get me back to a better place.
I'm using all my Typing Spoons writing this, and I'm sorry to have gone on so long and so bitterly before I hit that positive note. I didn't mean to turn this blog into a "complaining about MS" blog - I hoped to report news, give some insight about MS and fat acceptance and bisexuality from my experiences, and make like-minded friends. I've got some good news - fat news, actually! - and before I conk out and my fingers give out altogether, I thought I should list these good things!
Here we go:
* The SEMO Alliance for Disability Independence, which is a non-profit center that provides assistance for disabled people in my part of the state, has helped me out greatly during this time.
The point of this asterisk is that they also offer mobility and assistance aids to people who can't afford them or come by them easily. They gave me a used shower chair a few months back and it was a godsend, especially now. So when I first started to go downhill after having stopped Copaxone, my mom gave them a call and asked about a walker and potty chair (since I couldn't walk well enough - even with Michie holding onto me - to get to the bathroom in time).
Anyway, they called back right away with some positive news, and in mid-November my mom drove Michie and I there to pick up a walker and potty chair. I found a walker that fit me well - the first one they offered was too small and not wide enough for my hips to get to - and they had no problem with me needing another one. But I had to wait for the potty chair - again, the ones they brought out first weren't big enough for me to sit on comfortably. But the nice SADI people said they'd call the next day when they found one, and they did! My mom went to get it, and it's perfect. It wasn't a donated object - meaning it was going to cost something - but SADI will pay for one aid per person per year, as far as I understand, and so I got my potty chair with no worries!
The point is, it was no problem to ask them for larger aids to accomodate me. They were helpful, supportive, and completely understanding. No one questioned my size, how it related to my disability (not at all), or made a judgment or cracked a "friendly" joke. I felt completely respected and cared for by these dedicated, professional people. Kudos to SADI and their fantastic team of employees.
* One more bullet before I go: The day I went up there, SADI also pointed me in the way of a home medical supply company, which was just as helpful. Two young ladies helped me pick out a large size wheelchair (prescribed by my doctor) and I had a great experience there, too. They're currently helping me order a blood pressure cuff and stethoscope (prescribed for low blood pressure - how about that? Hehe) and it's the same thing this time. Again, good going you guys.
If anyone reading this needs information on how to reach these services and companies, please leave a comment with your email and I'll be glad to help.
That's all I've got for now. My next posts will be about two cool fat subjects: first, an upcoming article in the Columbia Missourian about the current media interest in fat acceptance. The lady who contacted me said I could re-post part of her email to me in here. Check back soon for more information. Fat Missouri bloggers, I'm looking at you! *points*
Then, after that, I've got a fat fashion / friend blog recommendation to hand out to you all. I'm sure you'll love both.
Take care, everyone. Again, thanks for reading.
The Endomorph
I'm not trying to shut anyone out - I love hearing from all of you! - but before you reply, can you please take a moment and register with Blogger? It doesn't take much time or energy and you can use it for all sorts of things - you could even start your own blog!
Again, I'm sorry if anyone feels excluded by this. Thanks to all of you for your kind comments (some of which I haven't replied to in months - bad Endomorph!). Now, on to my post.
As I said the last time, I've been in pretty rotten straits as far as my health goes. I've also been feeling out of place in the online community lately. It's not the fault of anybody specific, or any specific topic - I've been withdrawing from everything. It's the fault of being sick, really.
In short - or not so short, as it turns out - I have had, and am still having, a major exacerbation. The period of time I had to spend off of Copaxone in October threw me down into a place that I've never experienced before. I was worse than I'd ever been - worse even than before I was diagnosed, which is when the symptoms I still have first developed, and which was the first time I couldn't walk. All of my usual symptoms became worse, like my regular exacerbations, but then it got harder. I lost the ability to walk and to get out of bed - even just to sit up - by myself. My right leg became lame and useless. I went from cane to walker to wheelchair through November, when I took my first Tysabri infusion.
I didn't expect Tysabri to fix me overnight, but I hoped it would make a difference, since my body had become so sick so I could take it and hopefully get some help. I thought that it could surely clean up something that had just happened, if I hoped hard enough.
But it didn't. At the end of November, I told my neuro to put me back on Copaxone. He was disappointed - kept asking me to try one more month or so. But I told him I couldn't afford one more month of not knowing if it would affect me positively, and he wrote me a prescription. I was so happy.
But the hardship didn't end there. I knew I'd have to wait some time before restarting Copaxone, but I didn't expect a three-month wash out period. No one - not my doctor, not the MS specialist who recommended a pulse of Tysabri in the first place ("A month off Copaxone, three to six of Tysabri, then a month off again and back to Copaxone"), and not one of the many Tysabri reps I spoke to during this time - told me about that.
Like I said, I expected a waiting period like the one that required me to stop Copaxone. I blame myself for this - I should have asked more questions - but I still wonder why no one told me this. I always mentioned I intended to go back on Copaxone.
So I'd been stuck in this place since I stopped Copaxone and it only got worse - I was able to get back to a walker again, but in the last month I'd slid down the little bit that I managed to climb. Back in the wheelchair, not being able to use the right leg again, and whatever dexterity I gained in my hands is gone again. Plus a bout of optic neuritis causing my right eye to give double vision, followed by some scary misbehavior with my bladder, for which I'm going to see a urologist soon.
Anyway, I won't be bitter any longer - I went back on Copaxone on the 24th and I'm glad to have it. And fortunately, last Monday I went on a high dose of prednisone, followed by going in to the hospital for Solu-Medrol again today. (This is my fifth time.) I'm not so big on optimism, but I have a lot of good feelings that the reintroduction of the Copaxone, plus the Solu-Medrol, plus the prednisone taper that'll follow this week will get me back to a better place.
I'm using all my Typing Spoons writing this, and I'm sorry to have gone on so long and so bitterly before I hit that positive note. I didn't mean to turn this blog into a "complaining about MS" blog - I hoped to report news, give some insight about MS and fat acceptance and bisexuality from my experiences, and make like-minded friends. I've got some good news - fat news, actually! - and before I conk out and my fingers give out altogether, I thought I should list these good things!
Here we go:
* The SEMO Alliance for Disability Independence, which is a non-profit center that provides assistance for disabled people in my part of the state, has helped me out greatly during this time.
The point of this asterisk is that they also offer mobility and assistance aids to people who can't afford them or come by them easily. They gave me a used shower chair a few months back and it was a godsend, especially now. So when I first started to go downhill after having stopped Copaxone, my mom gave them a call and asked about a walker and potty chair (since I couldn't walk well enough - even with Michie holding onto me - to get to the bathroom in time).
Anyway, they called back right away with some positive news, and in mid-November my mom drove Michie and I there to pick up a walker and potty chair. I found a walker that fit me well - the first one they offered was too small and not wide enough for my hips to get to - and they had no problem with me needing another one. But I had to wait for the potty chair - again, the ones they brought out first weren't big enough for me to sit on comfortably. But the nice SADI people said they'd call the next day when they found one, and they did! My mom went to get it, and it's perfect. It wasn't a donated object - meaning it was going to cost something - but SADI will pay for one aid per person per year, as far as I understand, and so I got my potty chair with no worries!
The point is, it was no problem to ask them for larger aids to accomodate me. They were helpful, supportive, and completely understanding. No one questioned my size, how it related to my disability (not at all), or made a judgment or cracked a "friendly" joke. I felt completely respected and cared for by these dedicated, professional people. Kudos to SADI and their fantastic team of employees.
* One more bullet before I go: The day I went up there, SADI also pointed me in the way of a home medical supply company, which was just as helpful. Two young ladies helped me pick out a large size wheelchair (prescribed by my doctor) and I had a great experience there, too. They're currently helping me order a blood pressure cuff and stethoscope (prescribed for low blood pressure - how about that? Hehe) and it's the same thing this time. Again, good going you guys.
If anyone reading this needs information on how to reach these services and companies, please leave a comment with your email and I'll be glad to help.
That's all I've got for now. My next posts will be about two cool fat subjects: first, an upcoming article in the Columbia Missourian about the current media interest in fat acceptance. The lady who contacted me said I could re-post part of her email to me in here. Check back soon for more information. Fat Missouri bloggers, I'm looking at you! *points*
Then, after that, I've got a fat fashion / friend blog recommendation to hand out to you all. I'm sure you'll love both.
Take care, everyone. Again, thanks for reading.
The Endomorph
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