So, yesterday drove up to Phx to see my neuroimmunologist for week 96 of the clinical trial I'm in. Hard to believe it's been so long! And I have to say, I would really recommend the next clinical trial of it, a Phase III which I may not be able to be in (long story). It's been a truly amazing drug, and really very helpful to me and others, apparently and anecdotally. Zip new lesions in over a year and a half. The new study is up at clinicaltrials.gov, but they're not recruiting just yet.
So that's all the good news, and physically I seem to be okay, but my EDSS score went to an all-time high of 2 (I know, not a lot, but still) because my "mentation" impact was higher than usual. Normally I run a 1, but this fuzziness spoken of in my last post hit it enough so that rather than a "1b" or 1.5, my score was a 2. My lovely study coordinator was nervous, but my neuro wasn't at all. Given I'd just finished teaching for the year, a year I was completely overloaded with work, he thought it was not at all odd to find cognitive issues arising.
I asked and he said he would set up neuropsychological testing at the same hospital, and he said "It would be good for you to see. They're meant for an average, but I don't think yo're all that average. You will be surprised." How nice! :p. So, maybe it will make me feel all better to note that my cognitive functions aren't all melting ala the witch/water combo in the Wizard of Oz.
Oh well! I still feel okay, but annoyed by the bits of spelling I seem to be missing. I do have Dragon Naturally Speaking, but with luck I'll just be able to not worry so much abotu all that for a couple of months. What a relief!
Friday, December 17, 2010
Wednesday, December 15, 2010
the "sqeauky" wheel.."sqaueky".. SQUEAKY!
As some may have figured out, I profess English and have since I can remember considered myself an excellent speller. For real.
So yesterday, why did it take me half a minute to spell "squeaky"? Yeah, 3 vowels in a row, but STILL. Maybe because I was using a cell-phone keyboard? But then I also struggled with another word yesterday, something beginning with a "M". Hmm.
Right about the time I was going to go the hospital to eventually have surgery and later be diagnosed with MS, one of the great frustrations, more so than the cane use, was a feeling I'd lost some words. Not misplaced, not stuttering, but really simply just lost some words I'd known my whole life. Given I've been reading since about 3 and writing just about as long, this was disturbing. Noticeable to everyone? Of course not. With half my brain cells gone I'd probably still have a bigger vocabulary than many. VAST. ENORMOUS. Nay, MONSTROUS. I don't even go "uhh" anymore in speech because I thought a long time back it sounded stupid. So I just pause, and normally not for more than a half-second, until I find the word.
I never lost the ability to comprehend words I knew, but my typing was getting poor and I was struggling a little more for everyday words. At the time, it was the close of the school year in December, and I was both falling down (massive lesions on the motor cortices on both sides on my brain) and stumbling over words. I know I looked bad physically, but I felt much worse mentally-- I was not at all certain what had befallen my brain. I mean, come on-- I've not only got a degree or three, but I REALLY KNOW WORDS!
At the hospital in Phoenix, I graded my students' work and turned in grades. I don't remember what I read or how the papers were. Of course, I was kinda focused on my own health at the time, though time itself was a wee fuzzy. It's still hard to believe I did any work there.
After I got back, and read through all my doctor's reports, one stood out. It was from my neurosurgeon, a very nice, brilliant man, who noted "She is actually quite fluent, but it is obvious she is frustrated by [losing words]". Spot on! My best friends would probably have picked up on it, but neither hubby of 3 years nor colleagues really knew enough about me to see subtle signs.
On and off I've had some spelling issues when typing, but not all that noticeable. I do get nervous and angsty when my brain seems to be tripping over itself when trying to locate the right word. I wonder sometimes if words are individually stored or if synapses have to make multiple connections from which words derive. I would imagine the latter, but still-- even if they were individually stored I could have all the words in English in my head and still have a LOT of space for other brain needs.
I don't think I've had a bad relapse, but my paroxysmal (spelled that in one go!) symptoms pop up with about monthly frequency. I'm not sure how much my motor cortex was damaged, nor if I struggle with spelling because my hands have been affected and usually the problem is with written English (or typed) and the motor and mental skills are being jumbled.
But it's definitely scary, possibly the most unnerving of the MS issues. I don't give a rat's hiney about ending up in a wheelchair, though I imagine that will bring issues of its own. I do care about semi-perceptible brain slowing, the kind of thing that won't descend into dementia but will into a vague, "hmm... I know this... I KNOW this" feeling of being just on the wrong side of the right word.
Hmmm. These are the things that try my soul, and certainly (hadda work at that word 2x!) my patience. Unfortunately, few get it. That's the sucky, all-alone part feeling of MS, which I know some of my colleagues in the MS-universe hear me on.
May all your "squeaky" wheels be greased!
So yesterday, why did it take me half a minute to spell "squeaky"? Yeah, 3 vowels in a row, but STILL. Maybe because I was using a cell-phone keyboard? But then I also struggled with another word yesterday, something beginning with a "M". Hmm.
Right about the time I was going to go the hospital to eventually have surgery and later be diagnosed with MS, one of the great frustrations, more so than the cane use, was a feeling I'd lost some words. Not misplaced, not stuttering, but really simply just lost some words I'd known my whole life. Given I've been reading since about 3 and writing just about as long, this was disturbing. Noticeable to everyone? Of course not. With half my brain cells gone I'd probably still have a bigger vocabulary than many. VAST. ENORMOUS. Nay, MONSTROUS. I don't even go "uhh" anymore in speech because I thought a long time back it sounded stupid. So I just pause, and normally not for more than a half-second, until I find the word.
I never lost the ability to comprehend words I knew, but my typing was getting poor and I was struggling a little more for everyday words. At the time, it was the close of the school year in December, and I was both falling down (massive lesions on the motor cortices on both sides on my brain) and stumbling over words. I know I looked bad physically, but I felt much worse mentally-- I was not at all certain what had befallen my brain. I mean, come on-- I've not only got a degree or three, but I REALLY KNOW WORDS!
At the hospital in Phoenix, I graded my students' work and turned in grades. I don't remember what I read or how the papers were. Of course, I was kinda focused on my own health at the time, though time itself was a wee fuzzy. It's still hard to believe I did any work there.
After I got back, and read through all my doctor's reports, one stood out. It was from my neurosurgeon, a very nice, brilliant man, who noted "She is actually quite fluent, but it is obvious she is frustrated by [losing words]". Spot on! My best friends would probably have picked up on it, but neither hubby of 3 years nor colleagues really knew enough about me to see subtle signs.
On and off I've had some spelling issues when typing, but not all that noticeable. I do get nervous and angsty when my brain seems to be tripping over itself when trying to locate the right word. I wonder sometimes if words are individually stored or if synapses have to make multiple connections from which words derive. I would imagine the latter, but still-- even if they were individually stored I could have all the words in English in my head and still have a LOT of space for other brain needs.
I don't think I've had a bad relapse, but my paroxysmal (spelled that in one go!) symptoms pop up with about monthly frequency. I'm not sure how much my motor cortex was damaged, nor if I struggle with spelling because my hands have been affected and usually the problem is with written English (or typed) and the motor and mental skills are being jumbled.
But it's definitely scary, possibly the most unnerving of the MS issues. I don't give a rat's hiney about ending up in a wheelchair, though I imagine that will bring issues of its own. I do care about semi-perceptible brain slowing, the kind of thing that won't descend into dementia but will into a vague, "hmm... I know this... I KNOW this" feeling of being just on the wrong side of the right word.
Hmmm. These are the things that try my soul, and certainly (hadda work at that word 2x!) my patience. Unfortunately, few get it. That's the sucky, all-alone part feeling of MS, which I know some of my colleagues in the MS-universe hear me on.
May all your "squeaky" wheels be greased!
Tuesday, November 23, 2010
MS + TV + MD, = BS
Well, finally "House MD" explores more completely multiple sclerosis-- via, of course, the MOST RARE AND AGGRESSIVE FORM, so-called Marburg MS. Not only does our "hero", who nails himself to a cross per a promise between himself and God to spare his daughter from glioblastoma (that's a whole 'nother thing), have multiple sclerosis, but he has to have marburg, and he has to be offered only one of the potential treatments, and that is stem-cell transplantation. Because it is labeled in the show "embroyonic", the man has difficulty with this given his deep faith, so of course House tricks him. Click on the title of this post to go to the tv.com site.
I found the show a little weak, and lately as a whole the series has been repetitive and kind of slow-- not a lot of development and the "classic" only-speak-truth newbie vs House's "everybody lies, and apparently all the time" class is quite dull.
HOWEVER-- this was a moment where the writers could have demonstrated some sense in presenting and treating MS. That the guy grins maniacally (Pseudo PseudoBulbar Affect?) at all times in the throes of his Marburg-ness was ill done, IMO. I can understand why they chose the most dramatically effective one, but then it becomes a tool for House Vs God again. No discussion of potential other treatments, just the one seemingly most poised for dramatic effect-- and why would it have to be embryonic, other than for dramatic emphasis? Would Alemtizumab or Mitoxantrone be so much less dramatic? Would he have said no to them?
ARG! Weak writing, weak show for me for several reasons. Of course, now I do wonder who thinks MS is instantly, always fatal now. Well, such is TV-life.
Let's not even TALK about how the guy happens to be Latino. Why is it always my peeps who have the god-issues? (Yeah, I'm generalizing, damn it, and I have a license to.)
I found the show a little weak, and lately as a whole the series has been repetitive and kind of slow-- not a lot of development and the "classic" only-speak-truth newbie vs House's "everybody lies, and apparently all the time" class is quite dull.
HOWEVER-- this was a moment where the writers could have demonstrated some sense in presenting and treating MS. That the guy grins maniacally (Pseudo PseudoBulbar Affect?) at all times in the throes of his Marburg-ness was ill done, IMO. I can understand why they chose the most dramatically effective one, but then it becomes a tool for House Vs God again. No discussion of potential other treatments, just the one seemingly most poised for dramatic effect-- and why would it have to be embryonic, other than for dramatic emphasis? Would Alemtizumab or Mitoxantrone be so much less dramatic? Would he have said no to them?
ARG! Weak writing, weak show for me for several reasons. Of course, now I do wonder who thinks MS is instantly, always fatal now. Well, such is TV-life.
Let's not even TALK about how the guy happens to be Latino. Why is it always my peeps who have the god-issues? (Yeah, I'm generalizing, damn it, and I have a license to.)
Thursday, November 04, 2010
The autumnal ravings of a near-insomniac
Well, here it is, my favorite time of year, and I just so barkingly want winter to come so I can get a break from my job. For whatever reason-- OH! I know, the fact I didn't really get a vacation/ break this year from work-- I just am over the educational phenomenon in the US. It's been a bit mind-numbing lately, and also affected by my distraction due to Bear getting a BAHA implant underway.
Oh yeah. We are a multi-disability household! In the most recent test, his hearing is down to about 10% in one ear, with comprehension about as bad, and his left ear is at 40% hearing loss. The BAHA (Bone Anchored Hearing Aid) sends the sound vibrating through his skull to his other ear, which has a conventional hearing aid. It's not a cochlear implant, but if things get worse it will become one.
How the BAHA works
It's a really interesting idea, even though slightly less than ultimate technology really. But get this-- his BAHA will have a plug in for a MP3 player! OMG!
The bad part is it's quite gross-looking. The surgery involves ***WARNING GRAPHIC!*** cutting a slit behind the bad ear, lifting the flap to remove all the follicles, scraping all the tissue and muscle out down to the bone, and drilling a titanium screw a bit into the skull so it can osseointegrate, then kinda sliding it all back together and attaching an abutment to the site, then bandaging it all up.
Pic of a well-healed site
So needless, perhaps, to say I'm alternating between basket case and mental defective, and really would like very little more than getting the hell out of my job for a few months. Of course, I'll probably end up teaching something, because we still need the money-- one of the big reasons to deplete the savings for the BAHA is that Bear really is unemployable without proper hearing, but likely not disabled enough for any type of disability and he's not of retirement age. Sigh.
So yeah. Good news is that the last MRI didn't show new lesions, just old scars. I have since decided "Scars on my Brain" will be my autobiography title. Bad news is that I still haven't found a way back to any form of my center or any state of relaxation and calmness. It's insane here, and I struggle to not dislike it so much more each day. It would be best if I cared less, but that's hard to do for me. ARG!
Why can't I lose weight rather than sleep, dammit?
Oh yeah. We are a multi-disability household! In the most recent test, his hearing is down to about 10% in one ear, with comprehension about as bad, and his left ear is at 40% hearing loss. The BAHA (Bone Anchored Hearing Aid) sends the sound vibrating through his skull to his other ear, which has a conventional hearing aid. It's not a cochlear implant, but if things get worse it will become one.
How the BAHA worksIt's a really interesting idea, even though slightly less than ultimate technology really. But get this-- his BAHA will have a plug in for a MP3 player! OMG!
The bad part is it's quite gross-looking. The surgery involves ***WARNING GRAPHIC!*** cutting a slit behind the bad ear, lifting the flap to remove all the follicles, scraping all the tissue and muscle out down to the bone, and drilling a titanium screw a bit into the skull so it can osseointegrate, then kinda sliding it all back together and attaching an abutment to the site, then bandaging it all up.
Pic of a well-healed site So needless, perhaps, to say I'm alternating between basket case and mental defective, and really would like very little more than getting the hell out of my job for a few months. Of course, I'll probably end up teaching something, because we still need the money-- one of the big reasons to deplete the savings for the BAHA is that Bear really is unemployable without proper hearing, but likely not disabled enough for any type of disability and he's not of retirement age. Sigh.
So yeah. Good news is that the last MRI didn't show new lesions, just old scars. I have since decided "Scars on my Brain" will be my autobiography title. Bad news is that I still haven't found a way back to any form of my center or any state of relaxation and calmness. It's insane here, and I struggle to not dislike it so much more each day. It would be best if I cared less, but that's hard to do for me. ARG!
Why can't I lose weight rather than sleep, dammit?
Thursday, September 16, 2010
Straw, meet camel!
So the last few weeks have been quite MS-centric, with a dull headache for four weeks now, one PCP who still thinks it's a "localized headache", my neuros who are trying to get MRIs and MRAs done (that last for an aneuyrsm), blurry left eye vision with no apparent physical cause, and some shakes.
You know, typical crap.
Then, to top off weeks of hell at work, I get a call from my oldest brother that, following a serious manic episode at the end of a long week of mania, my sister ended up in the emergency room and from there went to a "center". She's bipolar.
Someone said "damn, she can't let you get the last word on anything!" I laughed, because I still think my melting brain beats her chemically unbalanced one any day. But honestly, I'm still not sure what to do with this. It has hit me harder than my own MS diagnosis. She was there with me, and we both did the thing my family does-- "uh... so okay, what do we do now?"
For me, research helps me think through what is happening. Everything I read helps to explain a lot about my sister, if hindsight is 20/20. Sure, she'll be on meds for the rest of her life, likely, but I'm not worried about that. I guess, I'm worried about how it will feel to know my sister isn't really totally capable of being leaned on. I haven't leaned on her for much lately, but in the past, especially after our mom died, we spoke a lot. I think this last time I spoke to her I let my own impatience get in the way and disagreed too much while she was still a bit manic.
Oh dear. Why is there so little effort, compared to things like cancer, say, to help resolve the foundational problems of the brain? I mean, I know we only have our brain to know our brain with, but the brain just hasn't been made sexy enough. We have no ribbon or bracelet, and yet... and yet.
Yeah, I buy pink. I wear my orange MS band. I'll wear a bipolar band if one exists, but the thing about issues of the brain is that somehow we seem so afraid to share and talk. Everyone seems to have an opinion, but we don't talk about what it would mean to really explore the brain, map out some diseases through PET scans, etc.
So, let's really think about a brain symbol campaign! How about shirts with diseased brains on them? A few with MS lesions? I'll offer my MRI scans!
You know, typical crap.
Then, to top off weeks of hell at work, I get a call from my oldest brother that, following a serious manic episode at the end of a long week of mania, my sister ended up in the emergency room and from there went to a "center". She's bipolar.
Someone said "damn, she can't let you get the last word on anything!" I laughed, because I still think my melting brain beats her chemically unbalanced one any day. But honestly, I'm still not sure what to do with this. It has hit me harder than my own MS diagnosis. She was there with me, and we both did the thing my family does-- "uh... so okay, what do we do now?"
For me, research helps me think through what is happening. Everything I read helps to explain a lot about my sister, if hindsight is 20/20. Sure, she'll be on meds for the rest of her life, likely, but I'm not worried about that. I guess, I'm worried about how it will feel to know my sister isn't really totally capable of being leaned on. I haven't leaned on her for much lately, but in the past, especially after our mom died, we spoke a lot. I think this last time I spoke to her I let my own impatience get in the way and disagreed too much while she was still a bit manic.
Oh dear. Why is there so little effort, compared to things like cancer, say, to help resolve the foundational problems of the brain? I mean, I know we only have our brain to know our brain with, but the brain just hasn't been made sexy enough. We have no ribbon or bracelet, and yet... and yet.
Yeah, I buy pink. I wear my orange MS band. I'll wear a bipolar band if one exists, but the thing about issues of the brain is that somehow we seem so afraid to share and talk. Everyone seems to have an opinion, but we don't talk about what it would mean to really explore the brain, map out some diseases through PET scans, etc.
So, let's really think about a brain symbol campaign! How about shirts with diseased brains on them? A few with MS lesions? I'll offer my MRI scans!
Wednesday, August 18, 2010
The carnival of mania, mistrust, misrule, and MS begins anew!
Lovely idea!Yes, that's right! Classes have started again and after a full year of sloggin' through research on retention, success, assessment, administrivia, and oh yeah some other teaching, I'm ready to put on the armor and go forth into academics. Or so I think.
Biggest freshperson class we've ever had, lots of lost students, lots of papers and online organizing-- always the same, really. I do like back-to-school time a lot-- something fresh and new and hopeful about seeing students excited about school. I will admit that college students aren't always that excited and some can be quite truculently silent (as some profs can be, myself included at times). I will admit that the closer they are to high school, the more aggressive they are in their desire to stand out by fitting into one crowd or another. I will also admit I wish I could have more Socratic dialogue and less paperwork.
On the other hand, it's a good job, and I do enjoy the teaching process. I love talking things out with students and figuring out how to help them best. Seeing lightbulbs go on in people's heads is a great reward!
Of course, with this comes the worry that my brain might short circuit again-- or was that a moment of blindness in my right eye? Will 126 degree heat index make it impossible to move? Will I start fluffing words again? WOE!
Yeah, I do worry about that a lot. My work is pretty much all mental, though some is simple endurance, and my brain needs to be pretty well oiled for me to do my job to my satisfaction. I'm hard on myself, but I'm hard on my kiddos too. Luckily so far my job's been okay with accommodations (like dr. appts during the work week!), but I personally feel a little less-than-spiffy. I'm sure it will all ratchet down, but good heavens.. what a job for a MSer to have!
Monday, July 26, 2010
The long sunny, it's too damn hot post
I really do hate the heat in Arizona, but having gone to Philadelphia a few weeks ago, I can officially say I think I hate humidity more.
Fortunately Yuma tends to have a whole lot of air-conditioned places, one of which ain't my home. Well, it doesn't seem that way. There's not a lot one can do without an industrial A/C when it's 118 outside-- again. I'm ensconced in my office and still have a fan blowing on me. Libraries and malls tend to get full quickly, as does the Wally-world. A couple of days ago I went to see Despicable Me in 3-D (didn't really need to see it in such, tho, great script), and for some reason right at the beginning it was warm in the theater. Isn't the reason people go to a movie to stay cool? Or did movies get good all of a sudden?
I digress. Despicable Me was very funny and smart, though the attitudinal kids annoyed me some. Most do. The minions, however, were a total blast!Click for Minions!!
That was probably the most social thing I've done lately-- went with Bear and friend n kid. Popcorn was nice, tho got a bit carried away with the white cheddar powder add-on. I don't really get out to flicks much, but netflix is my friend. I've been on all kinds of kicks, from Brit-com to classic. I do love some classic B/W films! So netflix allows me to be realllllly self-indulgent!
OK, still too damn hot but time to pretend other work is important rather than surfing the web. Ta!
Wednesday, July 07, 2010
Ocrelizumab-- the final infusion
*insert dramatic music*
earlier today I had my final infusion of my clinical trial.. Was exciting-- well, also because I was watching the World Cup during it, but I've had such a good response to it I'm psyched about the whole idea. So now, for a while I'll be observed and go in for an occasional MRI, until my B cell count goes back to where it was (or up...).
I admit that it could be a little daunting, since I guess as it rises I could have pseudo or actual relapses, but I'm glad I did the trial, for myself and others it might help! I am still in love with my Italian Phd/MD/ Bronze Olympic Medal Winning Neuro and his staff (GO MIA!!!) and the hospital.
The heat in Arizona is still bugging me, but thankfully my teaching is done for the summer and now it's all mostly administrative work. I get to go to PA for a conference July 11-14, so that might be amusing. Work-filled, but amusing! I could totally use a break from the heat-- it was 85 at 630 this AM, and is probably 103-105 right now, 3pm. AIGH!!!!
Hope everyone is coping well, heat or not. Let the dog days begin!!
Sleepy Auggie Doggie
earlier today I had my final infusion of my clinical trial.. Was exciting-- well, also because I was watching the World Cup during it, but I've had such a good response to it I'm psyched about the whole idea. So now, for a while I'll be observed and go in for an occasional MRI, until my B cell count goes back to where it was (or up...).
I admit that it could be a little daunting, since I guess as it rises I could have pseudo or actual relapses, but I'm glad I did the trial, for myself and others it might help! I am still in love with my Italian Phd/MD/ Bronze Olympic Medal Winning Neuro and his staff (GO MIA!!!) and the hospital.
The heat in Arizona is still bugging me, but thankfully my teaching is done for the summer and now it's all mostly administrative work. I get to go to PA for a conference July 11-14, so that might be amusing. Work-filled, but amusing! I could totally use a break from the heat-- it was 85 at 630 this AM, and is probably 103-105 right now, 3pm. AIGH!!!!
Hope everyone is coping well, heat or not. Let the dog days begin!!
Sleepy Auggie Doggie
Tuesday, June 22, 2010
Stupid things people say about MS
*reposted from "My daily Apple", Trevis Gleason's Life with MS blog*
(I'm not sure what the stupidest thing is I've heard, but I think most of the stupid things have to do with people thinking I'm going to die from MS tomorrow, and others offering some dope-ass cure ideas [parsley? really??]. Read on and snicker in empathy. Oh, and happy World Cup!)
June 10, 2010
People Say the STUPIDIST [sic] Things (About MS)
While , “But you look so good…” may be intended as a compliment (or at least a deflector) coming from someone talking about your multiple sclerosis, there are other things that people say that is downright mean. Whether or not it is intended, people can say some pretty hurtful things about (or actually TO) those of us living with MS.
While I must admit that the most offensive thing anyone has ever said to me was along the line of, “You don’t really need that cane; do you?”; in a recent article in the National MS Society’s Momentum magazine I read evidence of some pretty awful stuff that people can say.
Sure, we could chalk some of it up to ignorance, some comments up to fear and some a deflection device for their own “stuff”. Some of it, however, is nothing but people being just plain mean – The remark made to one of my commenters, Jan, about using a handicapped parking space was a perfect example of someone being nothing more than a complete ass!
Most of you know that we try to focus on the more productive in these pages. Once in a while, however, it’s ok to talk about the darker side.
As I unpack from one trip, only to launder my clothes for a jaunt back east tomorrow, I just can’t get this article out of my craw. From insensitive employers and coworkers to verbally abusive spouses, there is NO reason that we should put up with such comments.
The only way I can deal with these thoughts right now, I guess, is with an indigent, snorting laugh. “Some people’s kids…” So, rather than simply for the pity of it, I’d like to ask you for the pure pleasure of the humor only those who have been there can appreciate; What is the meanest thing / worst thing / stupidest thing that anyone has ever said about your MS?
Let’s all laugh at those people for their assumptions of us.
(I'm not sure what the stupidest thing is I've heard, but I think most of the stupid things have to do with people thinking I'm going to die from MS tomorrow, and others offering some dope-ass cure ideas [parsley? really??]. Read on and snicker in empathy. Oh, and happy World Cup!)
June 10, 2010
People Say the STUPIDIST [sic] Things (About MS)
While , “But you look so good…” may be intended as a compliment (or at least a deflector) coming from someone talking about your multiple sclerosis, there are other things that people say that is downright mean. Whether or not it is intended, people can say some pretty hurtful things about (or actually TO) those of us living with MS.
While I must admit that the most offensive thing anyone has ever said to me was along the line of, “You don’t really need that cane; do you?”; in a recent article in the National MS Society’s Momentum magazine I read evidence of some pretty awful stuff that people can say.
Sure, we could chalk some of it up to ignorance, some comments up to fear and some a deflection device for their own “stuff”. Some of it, however, is nothing but people being just plain mean – The remark made to one of my commenters, Jan, about using a handicapped parking space was a perfect example of someone being nothing more than a complete ass!
Most of you know that we try to focus on the more productive in these pages. Once in a while, however, it’s ok to talk about the darker side.
As I unpack from one trip, only to launder my clothes for a jaunt back east tomorrow, I just can’t get this article out of my craw. From insensitive employers and coworkers to verbally abusive spouses, there is NO reason that we should put up with such comments.
The only way I can deal with these thoughts right now, I guess, is with an indigent, snorting laugh. “Some people’s kids…” So, rather than simply for the pity of it, I’d like to ask you for the pure pleasure of the humor only those who have been there can appreciate; What is the meanest thing / worst thing / stupidest thing that anyone has ever said about your MS?
Let’s all laugh at those people for their assumptions of us.
Thursday, June 10, 2010
Time to party with the tofu!!!
Protein helpful in restoring myelin?
I'm psyched about this article, which discusses the result of research into protein: "A protein that helps build the brain in infants and children may aid efforts to restore damage from multiple sclerosis (MS) and other neurodegenerative diseases, researchers at Washington University School of Medicine in St. Louis have found."
OK, so it was in EAE, but hey! We tofu-eating vegetarians perhaps really do have a leg up on MS in general. No Omega-3 oils for me except from flaxseed, but I am a total protein junkie, big time. I do know that fatty acids are prevalent in myelin, and one of my neuros keeps pushing the fishy stuff on me, but I'm not biting (heh) just yet. There is a veggie omega-3 out, made from the algae fish eat to make their omega-3, but I just haven't ordered off the net yet. I should prolly do that sometime soon.
In other news, it's hotter n hell out here in crAZy-- hit about 108 a couple of days ago, though today it's "only" 100. Yes, it is a dry heat, but it will still kill you dead. I will be using my cooling vest (Thank you MSAA and SteeleVest!!) a lot, methinks.
And of course, WORLD CUP starts TOMORROW!!! Of course, starts like 5, 6am my time... AIGH!
I'm psyched about this article, which discusses the result of research into protein: "A protein that helps build the brain in infants and children may aid efforts to restore damage from multiple sclerosis (MS) and other neurodegenerative diseases, researchers at Washington University School of Medicine in St. Louis have found."
OK, so it was in EAE, but hey! We tofu-eating vegetarians perhaps really do have a leg up on MS in general. No Omega-3 oils for me except from flaxseed, but I am a total protein junkie, big time. I do know that fatty acids are prevalent in myelin, and one of my neuros keeps pushing the fishy stuff on me, but I'm not biting (heh) just yet. There is a veggie omega-3 out, made from the algae fish eat to make their omega-3, but I just haven't ordered off the net yet. I should prolly do that sometime soon.
In other news, it's hotter n hell out here in crAZy-- hit about 108 a couple of days ago, though today it's "only" 100. Yes, it is a dry heat, but it will still kill you dead. I will be using my cooling vest (Thank you MSAA and SteeleVest!!) a lot, methinks.
And of course, WORLD CUP starts TOMORROW!!! Of course, starts like 5, 6am my time... AIGH!
Wednesday, May 26, 2010
World MS day
Crap...the stairway to heaven/a cure is steep indeed!Imagine a day when everyone in the world got to experience a nice MS relapse!
Now THAT would be a true eye opener for many. I think even our caregivers would be surprised by the rebellion of our bodies and brains. Because really, you know, it is hard to describe the myriad symptoms, the pains, nerve issues, etc.
I do think our docs and researchers are trying very hard. I think for some, a sincere treatment without many side effects may be near. For me, the monoclonal antibodies work well, and I am VERY glad for them: my brain was so swiss-cheesy it still isn't funny. While I do fret a little about the future, nothing in me says I'm gonna give up, so I can fret, but right now things are manageable. It's like when I lost sensation in my right arm after being clobbered in a rugby game (the same injury which probably led to my back problems and herniated disk more recently)-- it sucked, but a couple of months of therapy made most of it better.
Perhaps as this MS day comes and goes, we can really think deep about our own reserves and powers... I'm not saying we can heal our mind by happy thoughts, but we can free ourselves from some worry and enjoy, endure, or observe the present with equanimity. That would be an admirable goal!
Friday, May 21, 2010
elements of argument
Ironically, as a prof who has to teach argumentation now n then, it is interesting to see fallacies and logical problems so rife among people who otherwise seems well-educated and/or rational.
I happen to be a member of a few not-always-well-respected groups (including educators) and am always astonished how insecurities and fear drive knee-jerk responses to them. Im sure a few MSers who happen by this blog might think "uhuh, dyke spic bitch fuck", but think about it: from whence comes the reaction? 'cause I'm not agreeable or accessible to someone?
I live in America. In AZ, where it's legal to carry a concealed weapon without a license. Into bars, even, unless posted. I'm not hugely fond of AZ, but should I choose to carry a gun (and I've even had law enforcement training for the feds), I imagine some people who have knee jerk verbal responses to my existence might be quieter.
But I don't want to carry a concealed weapon. I'd like to hope one day our American brains become as fast as our mouths. We're still reading as a nation at about 8th grade level. Many of us argue like a pingpong game-- back n forth, did not-did too style.
Argument fallacy 101-- Begging the question: treating an opinion that is open to question as if it were already proved or disproved. (thank you, LB Handbook, 11th edition)
Non sequitur: 'it does not follow'-- drawing conclusions from irrelevant evidence (ibid).
Anyway, desire springs eternal for my countrypeople. As does desire for a MS cure. But until then, civil discourse on all sides would be of value.
Health and love to all!
I happen to be a member of a few not-always-well-respected groups (including educators) and am always astonished how insecurities and fear drive knee-jerk responses to them. Im sure a few MSers who happen by this blog might think "uhuh, dyke spic bitch fuck", but think about it: from whence comes the reaction? 'cause I'm not agreeable or accessible to someone?
I live in America. In AZ, where it's legal to carry a concealed weapon without a license. Into bars, even, unless posted. I'm not hugely fond of AZ, but should I choose to carry a gun (and I've even had law enforcement training for the feds), I imagine some people who have knee jerk verbal responses to my existence might be quieter.
But I don't want to carry a concealed weapon. I'd like to hope one day our American brains become as fast as our mouths. We're still reading as a nation at about 8th grade level. Many of us argue like a pingpong game-- back n forth, did not-did too style.
Argument fallacy 101-- Begging the question: treating an opinion that is open to question as if it were already proved or disproved. (thank you, LB Handbook, 11th edition)
Non sequitur: 'it does not follow'-- drawing conclusions from irrelevant evidence (ibid).
Anyway, desire springs eternal for my countrypeople. As does desire for a MS cure. But until then, civil discourse on all sides would be of value.
Health and love to all!
Saturday, May 15, 2010
My little boy
Tommy Lee, 1997-2009. Love you, baby!Today would have been my catson Tommy Lee's 13th birthday. He died last year, Feb 7th, not even four weeks after I was diagnosed with MS.
Let's just say 2009 was a catastrophic year for me. I hadn't needed any more "character developing" moments in my life, and i always say, that which did not kill me just didn't try hard enough. I have a whole philosophy about hope, too, but that would take a lot of time.
His unconditional love, his sense of peace and grace were so tremendous... I would love to be him. We still have four cats, including his little brother Casy, who will be 8 on May 20th. But TL will always and forever be a huge piece of my heart and life. May he always be in peace, and hopefully, neve be reborn into this life-- I can wait to hold you again, my little boy. I love you.
Thursday, May 13, 2010
Goin' the other way on the CCSVI limb
I was recently asking some people who know I have MS why certain people reacted as if I had a potentially explosive brain tumor when they heard I have MS. Without hesitation, the response was "they just don't know better."
OK, I can dig that, I guess... because it corresponds with my own lack of overwhelming concern about dying from MS, or disability. I've never really felt like MS would kill me, and I've long been ready to be a fulltime crip. I won't be overly stressed when it happens.
I've had signs and symptoms for at least 3-4 years now, with diagnosis Jan of 2009, but I kind of figured well, can anything be done? It can? Well, let's do it. That is not to say I haven't had bad times and that I won't have more... doesn't mean I enjoyed avonex shots and side effects (which went away), but I just don't have the feeling of MS as a "horrible, disabling, crippling, monstrous" yadayadayada life-sapping badguy. I know I must seem very lucky to some who have MS-- I have insurance, a fanTAStic neuroimmunologist, a working clinical trial, a job, and a genetic predisposition to get things done. I have done about 90% of things I've wanted to (honestly-- i'm just missing the Oscar), and all that is left is to live a good, decent life and create as little terror and pain as possible.
So yeah-- I just am not hopping on the CCSVI bandwagon. There are serious problems in the methodology of research (yeah, I'm a PhD in English, but I read pretty well too). My major surprise is that I didn't really think I'd see a shrill (both ways) medical fad/ cure/ treatment/ whatever it is or might be acted out as they were in the past. Hey, I'm a vegetarian, I like my herbs and adore my teas, but it's not those that turned the Xmas lites off in my brain. Whatever the reason, the clinical trial drug works VERY well in me-- may not in others.
I look at it this way-- I was so ridiculously low risk for MS (not Scandinavian, raised in the sun, not even ONE yeast infection, and a non-environmentally risky job-- but yeah, female), yet my lesion load was so tremendous that it took 8 docs 7 days or so to hesitantly determine what I did NOT have-- by god, SOMEONE would have noticed blood drainage/circulation issues!
Or not...
And that is how the discussion of CCSVI goes. There is always someone who was cured or will believe themselves to be cured via unorthodox ways-- I swear one person said he was cured by parsley, chorella, and vitamin D. HMM!! Shouldn't the vegetarian have been protected from MS if veggies were the key? Undoubtedly, I'd contracted some invisible yeast infection.... or it's stress... or blocked veins.
I really do hate monolithic arguments. I can understand fear and loathing of MS. I am sure I'm relatively "lucky". I'm even a bit credulous.
But not about MS. And if one more person declares "all docs"/neuros are "in bed with Big Pharma" I'm gonna smack them freakin' silly. With my still-functional right hand, then beat them with my occasionally-needed cane.
Grump. I await some science.
And anyone mention grammar errors are "not supposed to be in English-major blogs!", I will say I'm off duty-- and THEN beat 'em with my cane. Grr.
OK, I can dig that, I guess... because it corresponds with my own lack of overwhelming concern about dying from MS, or disability. I've never really felt like MS would kill me, and I've long been ready to be a fulltime crip. I won't be overly stressed when it happens.
I've had signs and symptoms for at least 3-4 years now, with diagnosis Jan of 2009, but I kind of figured well, can anything be done? It can? Well, let's do it. That is not to say I haven't had bad times and that I won't have more... doesn't mean I enjoyed avonex shots and side effects (which went away), but I just don't have the feeling of MS as a "horrible, disabling, crippling, monstrous" yadayadayada life-sapping badguy. I know I must seem very lucky to some who have MS-- I have insurance, a fanTAStic neuroimmunologist, a working clinical trial, a job, and a genetic predisposition to get things done. I have done about 90% of things I've wanted to (honestly-- i'm just missing the Oscar), and all that is left is to live a good, decent life and create as little terror and pain as possible.
So yeah-- I just am not hopping on the CCSVI bandwagon. There are serious problems in the methodology of research (yeah, I'm a PhD in English, but I read pretty well too). My major surprise is that I didn't really think I'd see a shrill (both ways) medical fad/ cure/ treatment/ whatever it is or might be acted out as they were in the past. Hey, I'm a vegetarian, I like my herbs and adore my teas, but it's not those that turned the Xmas lites off in my brain. Whatever the reason, the clinical trial drug works VERY well in me-- may not in others.
I look at it this way-- I was so ridiculously low risk for MS (not Scandinavian, raised in the sun, not even ONE yeast infection, and a non-environmentally risky job-- but yeah, female), yet my lesion load was so tremendous that it took 8 docs 7 days or so to hesitantly determine what I did NOT have-- by god, SOMEONE would have noticed blood drainage/circulation issues!
Or not...
And that is how the discussion of CCSVI goes. There is always someone who was cured or will believe themselves to be cured via unorthodox ways-- I swear one person said he was cured by parsley, chorella, and vitamin D. HMM!! Shouldn't the vegetarian have been protected from MS if veggies were the key? Undoubtedly, I'd contracted some invisible yeast infection.... or it's stress... or blocked veins.
I really do hate monolithic arguments. I can understand fear and loathing of MS. I am sure I'm relatively "lucky". I'm even a bit credulous.
But not about MS. And if one more person declares "all docs"/neuros are "in bed with Big Pharma" I'm gonna smack them freakin' silly. With my still-functional right hand, then beat them with my occasionally-needed cane.
Grump. I await some science.
And anyone mention grammar errors are "not supposed to be in English-major blogs!", I will say I'm off duty-- and THEN beat 'em with my cane. Grr.
Wednesday, May 05, 2010
Feliz Cinco de Mayo!
..,.and now back to the regular schedule of politicians backtracking from race and color....
That kinda stuff just gets my MS going, you know? Sheesh. Nothing like being youngish, gifted, and brown in AZ to make one feel nervous!!
Oh well... AJUA!!
That kinda stuff just gets my MS going, you know? Sheesh. Nothing like being youngish, gifted, and brown in AZ to make one feel nervous!!
Oh well... AJUA!!
Monday, April 26, 2010
Amen.Friday, April 16, 2010
The Friday Night Lite-Blog
Well, another week of successfully living, such as it is! I have to admit that as it gets hotter here in the desert southwest, I'm likely to be getting very tired, somewhat cranky, and overwhelmingly upset with MS. I know it wouldn't be better if I were back home in Texas-- there, it would be hot AND humid. However, at least I would feel a little more relaxed.
Today was the first time I felt some real exhaustion slam down on me all of a sudden-- I was planning on going to a friend's 21st birthday party, but all of a sudden I just felt like hell. Warm, dizzy hell.
So it's good that this coming week I get to look over my health care, AND we get to add the husbear to the insurance... for 420 dollars a month. SHITE! I do hope that at least the lifetime cap disappears, though the paperwork still looks as thankless and graceless as always. But given how much OOP rates are-- Bear's medical is costing more than mine! (Thank you, clinical trial!!!) It is sickly ridiculous how frightening it is not to have medical care. For a long time, I've thought some kind of social health care system would be valuable here. I think at times our individualism streak in the US makes us bloody pigheaded and useless. We cannot seem to see or do anything in moderation, from eating to technology. Texting addiction, hello! :)
Ah well. The weekend hold more heat, some yardwork to be done, and a lot of grumbling about the state of the state.
And how are things on YOUR side?
Today was the first time I felt some real exhaustion slam down on me all of a sudden-- I was planning on going to a friend's 21st birthday party, but all of a sudden I just felt like hell. Warm, dizzy hell.
So it's good that this coming week I get to look over my health care, AND we get to add the husbear to the insurance... for 420 dollars a month. SHITE! I do hope that at least the lifetime cap disappears, though the paperwork still looks as thankless and graceless as always. But given how much OOP rates are-- Bear's medical is costing more than mine! (Thank you, clinical trial!!!) It is sickly ridiculous how frightening it is not to have medical care. For a long time, I've thought some kind of social health care system would be valuable here. I think at times our individualism streak in the US makes us bloody pigheaded and useless. We cannot seem to see or do anything in moderation, from eating to technology. Texting addiction, hello! :)
Ah well. The weekend hold more heat, some yardwork to be done, and a lot of grumbling about the state of the state.
And how are things on YOUR side?
Sunday, April 11, 2010
O. M. G.: Monsters vs. Aliens
HL and Dr. Cockroach, Ph.D.OK, clearly I like Hugh Laurie, and 'tis a reason to watch "Monsters vs. Aliens", but O.M.G. I really enjoyed the film! The more one has seen the old monster films (The Fly, Black Lagoon, etc) the better it is, and it is WILDLY funny and very well-written. And a bit violent. Hrm. Yes, a little bit violent.
My favorite lines? "O. M. G." and "My PhD is in... DANCE!!", both courtesy Dr Cockroach. All the major characters are quite good, though, very quirky. Of course, the huge insectosaurus totally is a rip off of Mothra, and it's perfect! My one regret is that I didn't see it in 3D at the theaters.
Still and all, totally enjoyable and took my mind off work and knee twinges. Am hoping no pseudo-exacerbations are on the way, since that would be major suckage. It's bad enough that Arizona summer is icumen in, loudly sing cucoo. We've started to hit the AC now, given that it is getting above 80 or so. I do NOT deal well with heat!
Onward into the week, dear friends! Or plug up the..erm.. hole... with our English papers...
Friday, April 09, 2010
Obligatory cat roll-call...
What? Too much coffee?Oh yes.. nothing like the morning dose of javajava... one of the things most definitely do not share with my four-legged kids. At present, two of them are racing about with abandon, legs flying every which way, fur floating in the air...
I suppose I should be glad, since we have four cats and three dogs and four more ghosts in the house.
This is Casy:
The EnforcerCasy enjoys being fluffy, enforcing the peace, and watching the doves outside. He is 8 years old this May, and was a 2-week old orphan whom I adopted at 10 weeks or so. We believe he's part or all Norwegian Forest cat, and my Icelandic friend thinks so too!
Clawdius Maximus Cattus:
The 20lb orange love muffinWhat to say about Clawd? He's big, long, cross-eyed, and VERY, very patient and calm! Which is good. He's also diabetic, so he gets shots and tests every day. His much smaller kitten-sibs love Clawd. However, he has been known to give a hard smack to interlopers. More on THEM in a later post! He, like all our others, is adopted but carries no grudge about that. He does, however, use a huge plastic storage box for a litter box. Big boy.
Well, prolly enough cat poundage for now! Happy weekend!
Ah yes! It must be the weekend! *GALLOP, GALLOP, GALLOP*
FDA approved walking drug for MS!
Well, we know it's not everything, the ol' FDA approval, but hey! An ORAL drug for MS that isn't an herb!
This is excellent news for anyone, prolly, with walking difficulties, etc. Check out the link if you haven't already.
I do hope all are well out there. It's beginning to look a lot like Summer in Arizona, which of course means my fashionable ice vest soon. Yaaaayyyy.....
FDA drug for MS walking difficulties
This is excellent news for anyone, prolly, with walking difficulties, etc. Check out the link if you haven't already.
I do hope all are well out there. It's beginning to look a lot like Summer in Arizona, which of course means my fashionable ice vest soon. Yaaaayyyy.....
FDA drug for MS walking difficulties
Tuesday, March 16, 2010
callahanonline.comSunday, March 14, 2010
And how was YOUR week?
Well, I did have some kind of impact on people at work for MS Awareness week! On the last day of the work week I wore a shirt in bright orange that has "MS Bites!" on it. Of course, no one really asked me about it, and there were a couple of odd glances my way. However, I do "Look so good!" so it doesn't surprise me that no one asked.
And really, how do you ask that? everyone, but EVERYONE knows I was gone in Dec of 08 looking like death, but only a few people actually know I have MS at work. I don't really worry about losing my job, since my bosses know, but sometimes I do wanna yell "I HAVE MS AND MY BRAIN IS MELTING!!" to shut whiners up. I mean, honestly!
So I felt like I did some good, and has some posters and brochures from MSFocus up, wore my orange, and basically was open for discussion. However, it was also the first week I was back at classes,, so I'm sure I could have done more. sigh!
OK, now to get to writing the disability issue paper I'm supposed to be giving in 2 weeks! At least it should be fun-- House and John Callahan as manipulators of the "Able" view of the
Disabled for fun and, of course, profit!
And really, how do you ask that? everyone, but EVERYONE knows I was gone in Dec of 08 looking like death, but only a few people actually know I have MS at work. I don't really worry about losing my job, since my bosses know, but sometimes I do wanna yell "I HAVE MS AND MY BRAIN IS MELTING!!" to shut whiners up. I mean, honestly!
So I felt like I did some good, and has some posters and brochures from MSFocus up, wore my orange, and basically was open for discussion. However, it was also the first week I was back at classes,, so I'm sure I could have done more. sigh!
OK, now to get to writing the disability issue paper I'm supposed to be giving in 2 weeks! At least it should be fun-- House and John Callahan as manipulators of the "Able" view of the
Disabled for fun and, of course, profit!
Tuesday, March 09, 2010
MS Awareness Week!
I keep hearing the song from Madagascar in my head: "He like to move it, move it..."
Well, we'll see if we end up with the kind of awareness that Susan Komen must have dreamed of accomplishing (and DID!) for breast cancer. I'd love orange to be the new pink! Or, at least share some time with pink...
"I like to move it, move it..."
Friday, February 26, 2010
Abolishing the Western New Year...
Yeah, that's right. I'm sick and tired of the western freaking calendar new year 'cuz it has been majorly sucking for three years now. Jan 2, 2007, my mom died. Jan 13, 2009, I was diagnosed with MS. Feb 7, 2009, my baby cat-boy Tommy Lee died in my arms. THIS year, Feb 13, our little catprincess Tedi died in her daddy's arms. Believe me, if I think about it I'll find a sucky moment for 2008.
So I'm swearing off the colonial remnant-calendar and going with the Chinese and Tibetan New year. Feb 14, Feb 25th. Why be bound to tradition?
So happy new year to all! I truly hope things get better, because I feel like I'm being hammered by fate, the world, and so much more. Sigh. Yeah, so that's why I haven't really been feeling like blogging about life with MS. That part of my life is ok. Third infusion went well. It's working!
Oh, for a beer! A good one... like a stout....
So I'm swearing off the colonial remnant-calendar and going with the Chinese and Tibetan New year. Feb 14, Feb 25th. Why be bound to tradition?
So happy new year to all! I truly hope things get better, because I feel like I'm being hammered by fate, the world, and so much more. Sigh. Yeah, so that's why I haven't really been feeling like blogging about life with MS. That part of my life is ok. Third infusion went well. It's working!
Oh, for a beer! A good one... like a stout....
Friday, January 08, 2010
Happy Gnu Deer you MSers!
Well, so far the new year has been far less dramatic than last year! Jan 13th will be my 1st MS anniversary. Maybe I'll go crazy and have some vino! Of course, a week after that I go back for the second set of ocrelizumab infusions. I have to say, I've been feeling pretty good on it! I'm not sure about all this jazz with CCSVI, but I'm doing pretty good so far.
I still feel a bit tentative about being cheerful overly, but.. maybe I'll get over it. Or not...:)
Once more into the breach!
I still feel a bit tentative about being cheerful overly, but.. maybe I'll get over it. Or not...:)
Once more into the breach!
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