Saturday, September 29, 2007

A real update, finally! (With fat girl pictures!)

I've been very absent the past few days but lots of things have been going on. I'll make a bulleted list of all the IRL drama to explain:
  • I stopped the Solu-Medrol infusions on Friday the 21st and I'm on oral prednisone for a month now, per standard exacerbation procedure. I'm feeling better, but the prednisone tends to make me both wired and erratically depressed lately, so it's kind of a roller coaster ride.
  • I'm hungry and would also like to eat the world thanks to the steroids.
  • My partner and caregiver (who worked for 20 years of her life) has applied for Social Security Disability (due to an autoimmune disease, a knee that's been wrecked for half her life, and severe depression) and we're currently working toward letting the government do its job for her. This is different than my SSI experience so I'm expecting more trouble for her than I had, but it's going mostly okay so far.
  • Said partner is terrified of doctors, though, and hasn't seen any in about 15 years. She had to see two in the past two weeks for Medicaid, both of which were nasty to her. The second diagnosed her as depressed, though, so she will receive Medicaid benefits in a month, which she needs. (I have been on Medicaid for a year; it's the only way I get my medication.)
  • My partner will see two more doctors this Monday in St. Louis (what a drive!) for the Social Security disability determination, and I'm trying to manage our combined stress as best I can until then. If you have any good thoughts to send, please pass them her way.
  • Back to MS, I have also decided to go on Tysabri and took my last Copaxone injection today. That means I have a month before I can get an infusion. I have an appointment with my doctor on Tuesday to fill out the paperwork.
  • I'm scared, but really excited about the new drug. I've heard some wonderful things about Tysabri that I hope (realistically) will happen with me.
Now that that's out of the way, has everyone checked out the awesomeness that is Sweet Machine's Challenge at Shapely Prose and The Rotund's Guessing Game? There are follow ups and they're all excellent reads. (Much better than anything by this douchebag, as reported by Kate, anyway.) There are graphs, even, which confuse me but seem to amuse and fascinate other people. So go read! Read read read, okay, before I get hit with the old meme stick.

Also, though I've never lied about my weight, I thought I should post a couple of photos here to show you all what a 5'0", 240lb woman looks like. You can click on the thumbs for bigger pictures:


Me in May,
maybe 10lbs heavier.


Me a week ago,
at my current weight.
(With new glasses!)


So yep, that's me, with my 46.9 BMI and my morbid obesity. And despite all this, from my last series of checkups, it's apparent that I'm not gonna keel over from diabetes, heart disease, or a stroke anytime soon. And you know what? Even if I was, it wouldn't make me any less of a human being deserving basic respect.

I believe Health at Every Size is a great idea, and it's probably the best route for people as a whole. But I'm going to admit right now (without any shame) that I'm not a terribly great practitioner of it myself, but I'm still alive, and still here, and I still have a body and a mind and feelings and that makes me a person. So whether I do yoga and eat a balanced diet, or (more likely) sit on my ass at the computer having a bowl of butter noodles for every meal, you can't tell a person from a picture.

Going around pointing at someone saying "they're not healthy!" because of how they look is stupid and makes no sense. First of all, just admit you don't care about health at all - you loathe the fat and want to hide it behind some kind of patronizing concern for us, as if we need your "help." Secondly, considering all the misses at Guess the Rotund's Weight, you probably have no earthly idea what X amount of weight looks like in the first place, douchebag, and X amount of weight does not fucking equal X amount of probability of disease, activity level, "good vs bad" eating, or any of that crap.

... Okay, I'm tired of writing. I have a vet appointment in three hours and an art festival to drag myself to in the afternoon. I gotta get some rest while there's still time.

This message has been brought to you by... a lot of other people, really, on whose generous coattails I'm riding. Thanks for reading.

Wednesday, September 26, 2007

Repeal "Don't Ask, Don't Tell."

My friend Kris passed along this link to me, asking everyone to write their congressmen and ask them to repeal "Don't Ask, Don't Tell."

The form letter they give is a pretty good one and leaves plenty of room for personalization. Also, they don't just mention gay and lesbian servicemen, they specifically mention bisexuals, too. That makes me feel really good about this. One of my biggest peeves is seeing the "B" in "LGBT" get left out. (The "T" is another one too, but that's a different post for a different time.)

Thanks.

Sunday, September 23, 2007

Happy Celebrate Bisexuality Day!

I'll be at home, attempting to cuddle with my lady love while simultaneously thinking of Danny Huston. It's pretty much the best I'm going to get, but hey.

(Read about Celebrate Bisexuality Day at Wikipedia.)

Wednesday, September 19, 2007

I love Paul Campos and I love The Globe.

Re: this article, which is made of win.

Labels.

I am:
  • Female or a woman, girl occasionally
  • Bisexual (often with a strong heterosexual preference)
  • In a same-sex relationship/marriage
  • Fat, occasionally curvaceous or voluptuous
  • Agnostic or witch (or lapsed pagan)
  • Liberal, Democrat, or progressive (pinko commie liberal is okay too, in jest!)
  • Disabled or handicapped

I am not:

  • A grrl, wimmin, womyn, cuntlovin lady (or somesuch nonsense I read once)
  • Lesbian, gay, pansexual, queer
  • In a gay, lesbian, or queer relationship/marriage
  • Overweight, obese, chubby, chunky, fluffy, "more to love," etc.
  • Stupid for not identifying as an atheist already
  • Lefty
  • Differently-abled or handi-capable

There's nothing wrong with the labels up there that I am not - they fit happily for plenty of people, and anyone should be able to call themselves whatever they want. They just don't describe me is all, so please label me accordingly.

This was an old post from my LiveJournal from last month, I believe, posted partly in response to this great article on fat semantics at Red No. 3. It unfortunately left out anything about bisexuals in the homosexual labels paragraphs and though I understand why, that always irks me somewhat. (Bisexuals seem to either get left out by the good guys, or pointed out in a negative way by the bad guys, so I guess I'd rather go with left out most of the time.)

Anyway, I felt the need to label myself here just to let everyone know who I believe I am :)

How do you all label yourselves?

Monday, September 17, 2007

Wacky hospitals, exacerbations, and the fickleness of scales.

So, I called in this morning and was able to get in to see my neurologist. He was really concerned about my symptoms, and suggested three things:

1) Another 5-day week of 1 gram Solu Medrol infusions given over 1 hour at the hospital, followed by a 30 day taper of oral prednisone
2) More MRIs - brain with and without, and cervical spine.
3) Tysabri.

More accurately, he said, "I really want you to consider Tysabri." To which I replied, "I'm so glad you said that!" He gave me the forms they have to fill out and fax to the TOUCH people, and told me to look them over during the week. I always have a follow up appointment with him the next week and he'll prescribe it to me then and get things going. I have to be off the Copaxone for four weeks before I can have my first Tysabri infusion, so it'll be awhile before anything actually happens, but I feel good about it.

My first day at the hospital went well, by the way. This hospital is normally a little screwy, but during the last week of Solu Medrol it went pretty smoothly, and I think it may do again. I always have a midline catheter put in to deliver the infusion into my arm, and the gentleman who does it these days is always a delight. I have absolutely no fear of needles, injections, blood withdrawals, or anything pokey or sticky related. I'm actually only ever scared if I can't see what's going on, meaning I must watch the needle going in and I must not be told to look away. The midline's a bloody little affair, with a big needle, and I was happy as a clam. And, you know, I was going to get medicine, so I was happy about that too.

The IV machines are age old and frequently backprime or get air in the lines, and they beep all day. It's funny because they always tell me to keep my arm straight and don't move, but most of the time when I'm there, I'm suffering from spasticity and straightening out - and keeping perfectly still - are painful. I've had nurses grab my arm and hold it sometimes, which is reprehensible, hence "a little screwy." (They've done worse, but I'll save it for another day.) Anyway, the funny part is, sometimes I sleep all curled up and it never beeps once - and some days, when I deliberately hold my arm straight, it beeps nearly ten times over the hour. It's ridiculous.

So the first good sign for this week was that it only beeped once - right after the solution had been hooked into the IV machine and the nurse was still in the room, so she could see that nothing was out of the ordinary. The machine was just being contrary. So, yeah, things are looking good at the hospital lately. Good, but curious.

Another curious thing I noticed (though not necessarily good) since going I'm to the doctor so very much is the absolute unreliability - no, the fickleness of scales. Now, I've never owned a scale you buy for the home. First of all, I've never had use for one, and secondly, if I did want to know my weight, chances were I would be at a doctor's office at some point and some nurse would get to heckle me about it. (I was sick growing up a lot too, and I've always been fat.) I always trusted the results, just like I was naive enough to trust some doctors I shouldn't have when I was younger, because - duh! - the scales are in medical facilities! And who couldn't trust them?

But I don't trust stupid doctors anymore, and now I can't even trust a good doctor's scale. I've always known there were differences between scales, but get this: At my neurologist's today, I got weighed (at my request) on one of those rickety "climb up on the wobbly metal platform, let someone slide something around until it sorta balances, then try to hop off without tripping" kinds of scales. I weighed in at 248lbs at his office. I think I gained about 5-10lbs since my last visit at my GP's, but it's natural being on steroids. It's also a lot closer to what I feel is my "normal" weight. During the last exacerbation, I felt like a ghost, and I was about 235-240lbs, where I use to rest happily around 250lbs - and haven't since my weight started buoying because of MS, dysesthesia, steroids, and all that other stuff. Just more proof that everyone's "normal" weight is different.

Still, I still feel ghost-like, even after being told my weight's nearly back to normal. So in comes the second scale...

When I got to the hospital, they had to weigh me there exactly for the infusion, in metric this time. The CMA brought in one of those big, wide platform scales with an electric meter that can weigh you in kilograms or pounds - serious business. They're also a lot easier to stand on, too, and have things to hold onto to get yourself into a good standing position. (Why my neuro, considering his patients, has nothing like this and no grips for people to hold onto is beyond me.) Anyway, on this scale, I weighed 241lbs. That's a 7lb difference! That kind of difference might make someone less sanguine about what they weigh totally freak out. I'm glad I'm not that kind of girl - about 99% of the time, anyway.

Oh, we interrupt this rant to bring you this news: Not that it would have either surprised me or broken my spirit, but I wasn't harrassed by anyone operating any of the scales, by the way. Again, I'm done with putting up with stupid doctors and nurses and their additional "fat kills" BS, but I'm glad I don't have to face it on a regular basis. Especially when I'm exacerbating.

So today I'm going with the latter weight reading. It's not because it's the smaller of the two - it's because the technology for the latter scale is obviously superior to my neuro's piece of crap scale. And I still don't feel "normal" in my body, so I'm going to listen to what it's saying and conclude that I'm probably 241lbs instead of 248. It has nothing to do with those zomg 7lbs ruining my day or my life. It just feels right to me.

And... that was my day. Doctor, hospital, midline, Tysabri talk, and dueling weight readings. Doesn't that sound like fun?

Yeah, I know it doesn't. Humor me a little; I'm sick.

Saturday, September 15, 2007

Dieting vs. Fat Acceptance.

So I'm reading Rio Iriri's post on dieting and fat acceptance, and I have to say, I really quite agree with her. The fact that she has a chronic illness like myself makes me appreciate the medical aspect she brought into this conversation, and I often relate to a lot of other stories she tells on her blog because of this.

I'm not ready to discuss this Dieting vs. Fat Acceptance issue at length yet, even though I mentioned it (discouragingly) in my own first post to this blog, but I thought I should link to her to show what I'm reading while I'm getting my thoughts in order.

Friday, September 14, 2007

On the subject of MS...

This post by the MS Activist on the DoD Appropriations bill, asking for $15 million for the CDMRP for MS research for veterans, inspired me to send (personalized) emails to my representative JoAnn Emerson (boo) and Senator Claire McCaskill (yay) asking them to sign. I feel pretty armchair-activist right now.

If you read the post, agree with the material (how could you not?) and wanna be like me, please send your senators and representatives email and ask them to help. It's the least we can all do.

Edited to add: I'm also very proud that one of the two representatives leading the caucus is Russ Carnahan (D), from my state of Missouri. Go us!

Considering Tysabri.

Have you heard about Tysabri (natalizumab)? Most MS patients have. It's an immunosuppressant back on the market since last year, produced by Biogen and Elan Pharmaceuticals. It was taken off the market for some time because three people developed PML (progressive multifocal leukoencephalopathy) - two cases were fatal. One of the fatal cases and the non-fatal one had been taking Avonex, Biogen's other MS drug for RRMS, at the same time. The other fatal case had a long history of using immunosuppressants.

I'm writing about Tysabri today because I'm considering taking it. Before I tell you why, I thought maybe I should write about my history with MS here. I've had it for over a year now, was diagnosed last November, and am currently taking Copaxone (glatiramer acetate), made by Teva Neuroscience, which I dearly love. Here's a short version of what I went through with my symptoms, diagnosis, and my choice to take Copaxone.

(Reposted from my tiny and never-used Copaxone community on LiveJournal, around April.)

I was diagnosed in early November after slowly degenerating since June. I wasn't able to see my neuro until October, because my former workplace misled me about getting my medical benefits, and I couldn't afford to see a doctor. I also had to move cross-country back to my mom's 'cause of financial trouble - in the worst of all this. I had gotten to the point where I couldn't walk unassisted, half of my left eye was blurry to see out of, I vomited up everything I ate because of a banding feeling around my stomach (so I'd dropped 1/6th of my body weight), I had trouble with holding my bowel and bladder, and below my neck it felt like I was wearing a thick bodystocking - no fine sensation at all, and even some pressure sensation was gone. I also had horrible pain along the sides of my spine and in my neck.

When I got back home, I'm lucky that my diagnosis was pretty quick and easy - well, I had five MRIs and a spinal tap within a couple of weeks, if you consider that quick and easy. There were two lesions in my brain and a whole score of them, still with swelling, in my cervical spine. Once I knew what I had, I spent a week in the hospital on methylprednisolone, which really jump-started my body back into behaving. Then there was a month on prednisone - a lifesaver for me before, during my second bout of Bell's palsy (my first one went untreated and is therefore permanent) - and while I took the steroids I decided on a long-term therapy.

I was all set on Rebif until I realized the only reason I wanted to take it was that the promotional material I'd read seemed like it was trying to scare me into taking it. I didn't want the flu-like side effects or the depression (no help needed there at that point) or the chance of becoming tolerant to interferons, but Rebif basically made it sound like if I didn't take it, I was definitely going to get sicker, all the while telling me how strong and brave I was. And when my fiancée Michie read it, she told me that was no reason to take a medicine for the rest of my life. I'm really thankful that she said that, because I was thinking it all along, but I'd already been so scared and confused by my diagnosis that I guess I needed someone close to me who knew me to tell me how they felt about it. She really saved me there.

So I went back to the other material I'd gotten - the Copaxone - and I reread it and realized how much better I liked the sound of it. Not just because this time there wasn't any doom and gloom disguised by images of people rock-climbing or anything, but because the statistical material impressed me more, and there was a comparatively smaller list of side-effects. When I called the Shared Solutions people for more information, they were really nice on the phone and I liked the general attitude about the drug. Of course, it took me another month to be able to start Copaxone, seeing as how I had to apply for Medicaid to be able to afford it. That's one thing that doesn't sit well with me about it, but I don't feel like talking about the problems with drug companies - even nice ones - in this post right now.

I started Copaxone in the beginning of December and I've been taking it ever since. I'm lucky that needles have never bothered me in any sense, and I don't mind giving myself injections every night - I've never missed an injection! I've had some site reactions and sometimes they're painful - like some muscle pain afterward if I happen to go too deep, or sometimes a raised area around the site - but they're nothing compared to the stuff I've read and heard from friends about the stuff interferons could possibly do to me. I know some people who are very happy on their interferon drugs, but I just didn't want to take that chance for myself.

I'm very new in my diagnosis and I have had some fallbacks since. At the end of December I was walking on my own again (with a cane), had regained most of the feeling in my body above my knees (my feet and calves going numb were the first signs I had MS, actually, and I know I might not get it back - I still haven't), my eyes had cleared up, and I was finally able to eat again! But by New Year's I was starting to go numb up the waist again, and my gait imbalance had gotten a little worse. So I went back on the methylprednisolone and then another round of prednisone. I got even better that time, and was really hopeful until the end of this month, when my pain got worse and the numbness came back again to my waist. So, last week was a hospital week for me and I'm currently on for another month of prednisone. I'm doing much much better this week than last one - I really love my steroids, I guess. I know it's bad to be on them for a prolonged period of time, but lucky I keep having longer breaks in between needing them.

I'm worried about people saying Copaxone isn't working for me because I seem to be having more exacerbations than I guess I "should" with the drug. I'm going to the Trotter Center at Washington University in St. Louis this month (on my birthday - oh joy!) and I'm afraid doctors there will give me news I don't want to hear, since I'm happy being on the Copaxone and think it's really helping me. Maybe I'm just going to have more exacerbations than other people. I've only been diagnosed for six months now. In the meantime, I have had more MRIs and no new lesions have developed since October, and every time I fall back, I end up coming back stronger than before.



... Except, this time, I'm not. I had another round of methylprednisolone in August, and have been on a month-long prednisone taper since. At first, again, it seemed like things were getting better. My main complaints with that exacerbation were pain in my back (a sure sign for me), loss of sensation up to my waist, and coordination problems. The oral prednisone taper after the infusions really seems to kick in and help the trouble, and it did... for awhile.

In the last week, I've been feeling worse than ever. My body is numb up past my waist again, so far up that I'm having dysesthesia again, which I haven't had for months. It feels like I'm wearing a body shaper and it worried me, because I hadn't had it in so long I forgot what it was, and then it came back to me like, "Oh, I'm not being crushed. It's 'cause I can't feel." That was truly terrifying. Add in several half-falls, spasticity that wakes me up in the night, burning skin, and that's my typical day for you lately. The increases in my medications (Neurontin, baclofen) haven't helped a bit, and I've been living for my typical 5-6 Lorcet Plus a day to try to mitigate the pain.

I saw that aforementioned MS specialist in April of this year and my fears were thankfully unfounded. The concurred with my first neuro's diagnosis of relapsing-remitting MS and suggested that, were I to have many more exacerbations, that I should go off the Copaxone for a month, try Tysabri for a set of months, go off the Tysabri for a month, and resume my Copaxone since it seemed to be helping with lesions in the brain and spine. Also, the doctor seemed to hold the same feelings about interferons that I did and actually recommended I not take them; that Tysabri would be a better route. If a doctor suggests Tysabri over interferons, she means business.

When I got back, my regular neurologist seemed to agree with her findings. That was five months ago, and things were better then. So, I'm considering it. And I'm kinda scared.

I don't think I'm a candidate for PML, but then again, I couldn't say I wasn't either. It's kinda scary, wanting to take a drug that's killed three people and was yanked off the market for a year because of it. Normally, I look at things like that pretty realistically (and harshly), but it's different when you're making a choice about it for yourself.

I have no idea where I'm going here right now, except that I'm feeling crummy, kinda scared, and wanted to let everyone know a little bit about my MS before I head on back to fat acceptance and whatever else. If anyone's reading, I'd love to hear your thoughts. Thanks.

Thursday, September 13, 2007

Figuratively speaking.

Figure magazine's looking for fat bloggers, so says Big Fat Blog, where you can follow a link to their website forums to see who's been nominated. Paul expresses disappointment that some names are missing, but is glad to see a few - and he's on the list himself!

I don't think they're looking for what's become the usual kind of fat blogger, though. That's okay; they're a fashion/lifestyle magazine, not a political one. It might be good for one of the winners to be able to bring some fat politics to the table, but I don't know how welcome that'd be in a place like Figure, and I also don't really read much fat fashion in most of the blogs in which I'm interested (and would nominate). Maybe I should read more fat fashion blogs so I can find out who some of these other nominees are?

Wednesday, September 12, 2007

Anita Roddick passes away.

I heard about this news through Kate Harding's Shapely Prose. Anita Roddick was a very interesting lady, the proprietrix of The Body Shop, and I'm sad to hear of her passing. Follow the link to Kate's to learn more about Dame Anita than you thought you did.

Tuesday, September 11, 2007

The Endomorph on: Fat Acceptance, dieters, being bisexual, MS, and other introductory things.

I've been mulling over the idea of creating this blog for a few weeks now. I guess I was finally spurred to do something about it out of the incredible discussion/drama that's going around fat blogs lately regarding "no dieting talk" rules in fat activism spaces. I personally agree with that idea, but the way some people have been expressing it has really been upsetting me. Mostly, it's because a few of my favorite bloggers have used the term "fence-sitters" to describe those people who might support fat acceptance but still be dieting toward weight loss.

As a bisexual person, the term "fence-sitter" is deeply offensive to me. When I first told my best friend about being bisexual, the first thing she responded with was not happiness for me or acceptance of what I finally chose to tell her, but instead that nasty word: "fence-sitter." It was one of the biggest let-downs of my life - that my gay, liberal, and (I thought) open and accepting best friend would turn out to be a bigot in her own way. She was able to live with me as gay or straight, but nothing in between.

I've heard "fence-sitter" many times since then, and about 75% of the time it seemed to be directed at bisexual people. So this whole "no dieting talk" thing got me thinking about that, once I saw that word being passed around. I'm certainly not on the side of the people who think dieting talk should be accepted in fat acceptance communities - I think fat acceptance and activism blogs should be totally devoid of it. Why should we, as fat people who are happy (or getting there!) with our bodies, have to listen to someone else's body negativity when there are plenty of other places on the web - probably a hundred times more, actually - for dieters to vent and chat about themselves and their food and body problems and hatred?

But, you know, it did make me empathize with them a little, I guess, when I saw that word. It's not at all the same kind of trouble as being bisexual - far from it, and there's really no comparison there at all to be made - but I do understand being caught between a rock and a hard place. I'd bet that a lot of people objecting to these posts might feel like they have to choose sides, and when my best friend - someone who'd helped me learn to like myself enough to tell her about my orientation - gave me that impression, that there were only two sides and I had to pick one or just go away, it kind of stung.

(I know that, in these discussions, some people are having trouble delineating between Dieting and Dieters. Most of the bloggers posting about it are talking about Dieting, and Fat Acceptance as a political movement - not about individual people, whether they be fat people, fat people utilizing HAES, super-sized fat people, Dieters, or what have you. And not about judging them, either. However, it seems that the feelings of many of these people - the Dieters, in this case, and super-sized fat people as well - are getting caught in the crossfire. This is what I'm attempting to address.)

So then I started thinking about how I've been fat all my life, and this dieting thing had never really touched me, even though I grew up with tons of body negativity and had been encouraged to lose weight all my life. And then I thought about how I've been bisexual all my life, and encouraged by both gay and straight people to hurry up and pick a side, or shut up and go away. But one thing that really defines and affects me now is being disabled, and I haven't been disabled all my life.

I've always disliked doctors because of the way they've treated me because I'm fat (among other things, which I may discuss later). Unfortunately, I have to see quite a lot of them now because of multiple sclerosis, which was diagnosed almost a year ago. One thing I've found is that I'm constantly having to distinguish between being disabled because of MS and being disabled "because I'm obese and going to die!!!1" The latter of which, you know, just isn't true. Because fat isn't inherently unhealthy, doesn't kill you, and shouldn't be a sign of personal failure, either.

And then there's the ironic part of being fat and sick: the MS actually caused me to drop about 60 pounds after onset, and I haven't been able to find my "normal" weight since. I was able to gain most of it back thanks to steroids, which lessened my condition and made me healthier (!!!) again, but I've been hovering around 240, where I used to be 250, and sometimes I dip down to 220 if I'm having another exacerbation. And everyone's like, "Oh, it's great you're losing weight!" And I wanna say, "But, but, but... I'm losing weight because I can't eat, and my stomach feels like it's being squeezed tighter than Melora Creager's corset, and, and, and..."

... Oh yeah, there's that too. The title of the blog is taken from Rasputina's "The Endomorph" and lyrics. I mean, I am an endomorph. And I'm slow, 'cause I can't walk without a cane anymore. And I go back and forth, because I'm a fence-sitter... uhm, I mean, I'm bisexual. Even though I really mostly like men, but my fiancee of six years is female, so... I dunno.

I'm all typed out, and I think this introduction's pretty much done with. Maybe I'll just save the rest of this for another day. So make way for plenty of links to blogs and half-assed rants and raves, okay? Take care.