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Preview: The Gimp Chronicles: Shade-Stealing Crips

The Gimp Chronicles: Shade-Stealing Crips



An exasperated and probably often angry look at life in general and with multiple sclerosis in particular, because, "It's not Lupus!" (House MD)



Last Build Date: Mon, 13 Nov 2017 14:55:11 +0000

 



Ocrevus 2 & onward

Thu, 03 Aug 2017 00:14:00 +0000

I knocked out the second dose about 3 weeks ago, and I felt fine though I think I made the nurse nervous... Heh. But I'd say it was okay. January 3rd is the next one now.

I do think I feel some joint pain and a little leg pain now, but I think I felt that after infusion when I was in the clinical trial starting 2009. The leg pain feels like a shin splint. Just startling. My low back hurts a great deal, but I've a lot of back damage that had nothing to do with MS.

A bit of a cough, but I'm not sick, people say I look better, and my body has  more energy. I recall it took a couple of months to really feel a change, but then poof! I really felt better!

With copay assistance, the total for each infusion was  10 dollars. Yup. I do hope people who want to try it will look up the program. And good luck to us! 



Ocrevus #1

Tue, 27 Jun 2017 16:21:00 +0000

FINALLY! After several years off drugs for my RRMS, through trying Plegridy and Tecfidera, I'm finally back to get ocrevus,  clinical trial for which I was in 2009-2011. It worked spectacularly too.  So I'm excited about this, and amused by the infusion center I'm at. I have my netbook, usbs of silent films, and my lucky Lionel Barrymore as Rasputin shirt on. :)

Let's see how this goes! And yes I did apply for and recieved the copay assistance---ocrevuscopay.com, if you're interested.



Ocrevus...it's on!

Wed, 19 Apr 2017 00:59:00 +0000

 Hello you gorgeous phase II clinical trial drug of my life,  you...

It's on. Oddly,  my Neuro who prescribed it is leaving the hospital soon,  where my Neuro who got me in the phase 2 trial for it left that hospital not long after the trial there ended. Either way,  I'm grateful to both.  Yes,  there will be a pharmco discount plan right off.

So. Bloody. Thrilled! Let's do this thing! Besides, Tecfidera doesn't seem to be doing much.  So there.



Happy (?) New Year

Tue, 10 Jan 2017 13:41:00 +0000


Well for my first post here of the new year, I do want to wish my 2.5 readers a good, joyous new year with healing and love. Having said that...

Good lord, 2016! And I just mean for myself. My first relapse in about 7 years, struggling to get that under control, and almost succeeding, first case of optic neuritis, lots of cog fog...and no, I still don't think Tecfidera is working. And now, instead of the FDA approving Ocrelizumab for RRMS on December 28, they're pushing the decision to late March, to better look at manufacturing issues or what not (thankfully, not over safety concerns). Ever since the end of that Phase II trial I was in for it, I have been waiting for its approval...annnnnd I'm still waiting. PAH!

I aged a great, great deal last year, measure not just in the incredible increase in gray hairs but in my frustration with this stupid disease. I honestly don't think, given my career, that being able to walk is always the primary concern for me. I CAN'T THINK AS FAST I ONCE COULD. And without bragging, I can say I was and basically am still a very rapid thinker-- it's my job, it's what I've done my whole working life, it's part of my educational training, and it's me. I enjoy solving problems and moving on, I actually enjoy multitasking--

--well, I used to. And I am truly sick of people laughing and saying, "ha ha, well, now that just means you're like one of us" (I presume they mean "normal", non-MS, non-brain intensive-career people).  Well if I am, then I think it bites. I don't want to be "normal", I never have been, and even the MS can't make me normal; it just makes me feel broken sometimes. I have made a couple of "forgetful" errors that could have been dangerous (the classic left the stove on one didn't cause any damage) and it's frightening to me, even if yes, other people do forget things now and then. It's not the same, or it certainly doesn't feel the same.

I presume a few out there can relate to this. I've made some adjustments and I have a wonderful boss and coworkers who really, really are helpful and patient. So I know I am very lucky, even if my job is grant-funded and we're up for renewal in what could be an ominous education-funding year. I have insurance, a partner who is incredibly patient, and some lovely cat and dog children.

But I also have MS, and yeah, a lot of last year, it really DID have me.



Tired of Tec

Sat, 01 Oct 2016 00:16:00 +0000

I think I'm done with tecfidera.  Ocrelizumab seems to have at least a name from the feds,  so approval looks imminent if not already done. I'm ludicrously exhausted. Honestly,  I give tecfidera credit for weight loss,  but I'm just hammered with fatigue, limping, cog-fogged... Really,  maybe I just improved because of the steroids when I relapsed. I feel like crud, unusually so.

I have no idea of it's working.  My neuro is happy I'm not on crutches now due to weak legs, but they sure tire fast! After all,  I work primarily with my brain,  not my feet, so I am more worried about cog problems than limping or not.

I'm not sure what else to do about the fatigue--already use adderall to stay awake, but it's not enough lately.

I don't want my bday to dawn when I feel this way,  and it is RIGHT around the corner!  Ugh, ugh, and damn.



Cross-post: Lionel Barrymore and wheels on film

Fri, 12 Aug 2016 02:07:00 +0000

Wheels & Crutches & Canes, oh my--why I bother to research an old movie actor

This is a cross-post form my other, much newer blog: Barrymuch, Barrymore, Barrymost: Lionel Barrymore, obsessively. It's on a member of the well-known Barrymore acting family (Lionel's brother John is Drew Barrymore's grandfather) who for the last quarter or so of his life lived and acted in a wheelchair.  His popularity never seemed to wane--and this was in the 1930s, ladles and gentlemints.

He was a damn impressive actor and a very interesting member of a stupendously complex and flawed family, and he also held his own while in horrible pain physically.  I wrote this to explain to my (few) readers why I bother researching his work and life, especially if they're not familiar at all with disability studies.

You might find it interesting, gentle reader! If not, well, I'll get back to being more morose on this blog soon! :)
(image)
Lionel Barrymore as Dr Leonard Gillespie, left; Lew Ayres as Dr. James Kildare, right, The People vs Dr. Kildare, 1941




Cross-post from my new blog: Lionel Barrymore, wheelchairs, acting, oh my!

Wed, 27 Jul 2016 00:13:00 +0000

Over at my new(er) blog, Barrymuch, Barrymore, Barrymost: Lionel Barrymore, obsessively, I recently wrote a bit on wheelchairs, Mr B, and film and whatnot. For those who don't know, Lionel Barrymore remains one of the very few actors who had a long career even after he required a wheelchair starting in 1938. He rolled an awesome path for people to get their brains around a person in a film who actually used a wheelchair, but oddly, the 1950s (Mr. B died in 1954) seemed to roll back some of the positive forward motion he all by himself had made in representations of disabled, wheelchair using-folk in film. He seems to have single-handedly pushed aside all kinds of barriers and his films and he himself were wildly popular, starting in 1938 with Young Dr. Kildare--indeed, House, MD seems to have ripped off the cranky, disabled diagnostician routine whole cloth from Barrymore's Dr. Gillespie!Mr. B had no pretense of being any kind of hero or "supercrip", but really felt driven to keep working and had a studio (MGM) whose head both personally like Barrymore and who wasn't stupid enough to think he could let such a good, popular actor slip away.  Once in a while, extremely rarely, he would use crutches in a film, and could use them if he needed to in daily life, but he truly disliked them. I am utterly fascinated by him and his acting, and yes, his work before 1938. Fascinated person.If you're wondering how he got to BE in the wheelchair-- you should go read the bio, etc on my blog!    Brief biography of Lionel Barrymore* *yes, he's Drew's great-uncle; his brother John was Drew's grandfatherWeekend Wheelchair MusingsAstute readers probably noted I mentioned I have a blog on MS. That's because I have relapsing-remitting MS, Dxed 2009. I'm probably one of the lucky ones.  Now that I think about it, in a roundabout way it led me to Lionel Barrymore's acting, so I'm quite lucky! [Note: his brother John is indirectly responsible for my grad degree...more on that later!]In reading about LB and his chair, what I found interesting is the Kildare films were done so well (Bucquet directing very nicely many) the wheelchair became almost irrelevant to the plot. Now and then, we are reminded of the good Dr. Gillespie's need for it, but the doc himself is never an object of pity. We learn very quickly there's nothing to pity about Dr. G!There are the typical "hero" disabled person moments spoken by others, as when an aside is used to "prepare" people who are about to meet Dr. G for the first time,  along the lines of "he's brilliant, but his legs are hopelessly crippled". They become fewer as the films continue.  I've seen that used in just about every film with someone in a wheelchair who has a major part.  Now,  I can see the need to establish the background story quickly,  but seemingly,  given the popularity of the films, LB was the attraction,  and the fact he was acting circles around people while IN a wheelchair meant his skill "normalized" for viewers a person in a wheelchair. I'm not claiming he did this all on his own, or that he even meant it to happen. He does note he's a good "jockey" in his chair and doesn't mind answering or forwarding to his chair manufacturer letters from the public about it.  Others, including Ronald Reagan,  noted the already skilled scene-stealer would use his "chromium contraption"* to great use in dominating a scene--even smacking into people's shins with the wheels. LB is absolutely masterful in the films in the way he moves his chair to emulate what he'd likely be doing on two feet. It's really astonishing.I think without LBs incredible talent, a shift in the audience's acceptance of a character in a wheelchair who actually USED a chair in life would not have happened. How many actors in wheelchairs who really need them can you think of? [...]



The (too) long hot summer

Sat, 09 Jul 2016 05:07:00 +0000

Yeah. It's hot out this way.  A spring during which we almost drowned with rain,  and now a stupid-hot summer. No, not as hot as Yuma, AZ, where I lived 7 years.  But still.  Fricking hot.

After my two-month relapse from May, I've managed to get severely overheated once, in St Louis at a conference, and mildly overheated a couple of times.  I've caned about a few times,  but now only have a cane and crutches in my car.  I presume the tecfidera is doing the job,  but I'm unnaturally fatigued always now. The hardest part of my work year just ended,  though,  and I'm anticipating catching up on sleep,  oh, by the end of the year!  Nope, I'm still not being very good at taking the Tec like I'm supposed to.  It still occasionally will give me stomach problems.

Interestingly,  and it's something that may change future treatment,  my oldest brother was just Dxed with RA. That makes our mom, him, and me all with diagnosed autoimmune problems.  She had the milder form of scleroderma. Now,  they are wildly different,  but still immune system issues. I kind of wonder what genetically we are carrying about. They are five of us siblings, and two have some autoimmune problem.  Hmm. Yet another thing to research!

My Barrymoring also carries on. I need to focus on finishing the film coding soon and figuring out how to narrow my focus. I'm still utterly fascinated by his life and acting.  So I will leave you with,  yes, Lionel Barrymore,  ladles and gentlemints!
(image)
As Andre Dakkar in The Mysterious Island, 1926/29. Purr...




The unbearable timewasting of internet research

Thu, 23 Jun 2016 20:34:00 +0000

So it's been a hectic time in my life, personal and work, and of course bad news rains down like fire and brimstone in the world. I'm not totally liking Tecfidera yet and got way overheated twice already this summer, leaving me with spaghetti-legs. I try to dodge a lot of it by reading a British paper online (The Guardian), but things seep in to my FB feed, of course. So I've been working on research on two articles mentioned prior, on Lionel Barrymore and the influence his necessary wheelchair-use in films may have had on the reception of disabled people.Y'all may not have figured this out by now, but I'm a pretty good and often obsessive researcher. So for this guy, whose acting career spanned on screen alone 1911- 1953 (!), there's a lot to research even if I limit myself to 1938-1947, the Kildare-Gillespie years where he appeared in a wheelchair.  I wanted to share a few interesting pics I found..cuz I can.  I need to think about starting a blog JUST for Lionel Barrymore.  But I digress!Lionel Barrymore and Bobs Watson, 1938, Young Dr KildareI like this pic because it shows LB's character, Dr. Leonard B. Gillespie, in his chair interacting with a young, quite happy boy who has a leg crippled by some unsaid problem. When Gillespie asks the boy what he's dressed up for, the boy responds cheerily, "I'm a cripple!" There's a great comfort level between them, both reacting to the other as near-equals.LB and Watson again, in Calling Dr Kildare, 1939. Here, the same two characters meet, and the doctor is going to give the boy a pair of roller skates if he can walk a prescribed distance. The brace the boy had in on the bed behind him, but Gillespie remains in his chair. This running story across two or three films is really very sweet. For an old grumpy character, Gillespie (and Barrymore, apparently) seem very at home with children. Of course, the debate is....are children really honest about observing and reacting to disability or do we ignore their reaction, or what?  In the films, several kids ask him about his chair.Dr Kildare's Wedding Day,1941. I am not sure if this confused people, but it's the only time in the series Barrymore stood on his own. He then sits back in his chair.This was a fantastic find, because it complicates the character and people's reaction to wheelchairs. Not everyone in a wheelchair is unable to stand, and like me, some only use a wheelchair now and then because of leg weakness or whatnot. What's interesting as well is it makes it very clear Barrymore was a tall (5'10or more) man as well as a big man. No one in the scene is shocked he's standing--they're shocked by the suit he's wearing, which he tells them he bought in... 1899. :)Enemies of Women, 1923, Barrymore on the rightAnd then there's this pic, which I adore and stumbled upon accidentally. On the right is a forty-four year old Lionel Barrymore, velvet britches, leather boots, and all. Ridiculously handsome cuss!From obsessive viewing of his films, I know that visible indications of the arthritis, etc which was to lead later to his painful need for a wheelchair probably appeared about 1923-24. There are many stories, well-attested, to his need for painkillers and addiction to then-uncontrolled morphine by 1925-26.  He managed in spite of serious pain to act in many, many great films, over 30 after he was in his wheelchair full time. In one, Down to the Sea in Ships, he spent most of his time standing or moving about on crutches.It is funny how in researching his whole life I see evidence of the same kind of back and forth adaptation to change, the frustration, anger, resentment over not being able to do what one wants all the time. Could I have done what he did with the relatively primitive medications and regimes they had in the 20s-40s? I have no idea. But it seemed a fantastic hell.Then again, wh[...]



How do YOU celebrate World MS Day??

Wed, 25 May 2016 16:53:00 +0000

...apparently I do so by forgetting I had a workshop to present to my students. SRSLY. I think I looked like this when I realized:
(image)
Lionel Barrymore as insane Prof Leroy in The 13th Hour, 1927

I am really very good about reminders, calendar use, etc, but this just slipped away on some puckish malfunctioning synapse.  Well, that and I stayed up talking to my sister for six hours and went to bed at 4am.  The struggle is real.

I am sort of laughing it off, but since I also forgot to take my Tecfidera this morning, I realize I need to reassess my planning and coping skills and slow the hell down.  I think that's how I'll celebrate World MS Day--slow down.

My sister and I talked a great deal about how we both kind of bulldoze through whatever needs to be done. She was there with me when I got my MS Dx in 2009, and we both did our own coping thing--me saying "well, ok, what now?" and getting right into a clinical trial. I have no doubt that trial (for Ocrelizumab, soon to be approved) saved my much-overinflamed brain. And really, MS gave me no choice then, sooo..

But it did slow me down in some ways, and after my 2 month relapse which started March 5, I was reminded forcibly that yes, I'm sick, and yes, it's not going away, and yes, you will need to find time to rest and slow the hell down. I've been quite fortunate, but it feels like I probably did work myself to the point of needing to rest, perhaps ignoring enough to slip into a relapse--some of y'all know the feeling.

So this World MS Day, I'm grateful for my awesome job and awesomer boss, for a good enough brain so that enough synapses take up the slack for the burned out ones, and that I do have a sense of humor about it all. Now, what I need is a personal assistant to force me to sleep and/or rest. That would be the "most perfectest" Rx ever.

Enjoy the day, slay your demons, and smile as you plow through the obstacles. Then nap. Srsly.



Super crips and side effects: LB= Little Blue pills and Lionel Barrymore

Mon, 23 May 2016 21:12:00 +0000

Caption for above: "I'm not her father! YOU are!" Lionel Barrymore's character (rt) to Lon Chaney's in West of Zanzibar, 1928. Ironically, Chaney did not end up in a wheelchair--but by 1928, Barrymore was constantly requiring painkillers and not in great physical shape. So Tecfidera (little and blue!) has proven, at full dose, to be QUITE the pain in the intestine. I've never had stomach side effects,and taking two doses a day has killed me. I'm down to one a day because I can almost tolerate it IF I remember to eat a high-fat, high-calorie breakfast (and I've lost about ten pounds over a month and a half). Managing to keep something in my stomach all day has not been successful.Now, does it work? Per my neuro at last appointment last week, yes, it does. March 5th I was using crutches, then I had a week on crutches, cane, and wheelchair, then started Tec...and I can walk, hallelujah!  I begin to think when my gut knots up that hey, crutches aren't TOO bad, right? I can't wait for Ocrelizumab to come out, hopefully December!So what I did in part those 2 weeks or so I hid out by the bathroom was watch Lionel Barrymore films of all kinds, not just Kildare/Gillespie, and start collecting articles and clippings, especially reviews, of his films. The most astonishing thing is I'm having a hard time determining which wheelchair he used! I know it could only be one of say two companies, but I can't find the patent for the specific chair! I'll need to visit our local Military Medical Museum (Fort Sam Houston) to see if they can help, but hey, here's a good pic of LB in it if anyone knows:Circa 1940 (his crutches are behind) Note the unique rear caster axle set up. This one folded.I know the first real metal folding chair only came out in 1938 or so, by E&J, but this one does not appear to be a standard E&J from the period. It's the rear wheel set up that stands out. I now it had ball-bearing wheel axle/hubs, which would have made it remarkably maneuverable. Perhaps it's a Gendron? My own (older, used) folding chair with ball-bearing shaft/axle is MUCH easier to use than the brand new one I rented without similar wheels. It was bought by a friend for me, and is probably from the 80s, but in fantastic shape. Right now I live with a cane, a set of crutches, and a folding wheelchair in my car trunk.  It's a Multiple Sclerosis life!But doing research on Barrymore's life and adaptability to his need for the wheelchair has been a great distraction. Certainly there's a quantitative article in it--after I'm done watching and coding the films for whatever, I'll be able to show a certain pattern or prevalence of disability "visibility". Having access to most of the films' box-office records tell me that the films (Kildare/Gillespie) were ENORMOUSLY popular.  Barrymore himself seemed to deal with the need for the wheelchair pretty practically, though I'm still working on finding correspondence about it. I know he was a kind of Celebrity Chair of the National Arthritis Research Foundation when it was established in the 1940s.  His bio makes it clear he made the very best life he could--adapted car, crutches when needed, and a studio pretty willing to accommodate the needs of their best character actor. Still, he was in a great deal of pain from joint inflammation ( and possibly poorly healed hip fractures) from the 1920s onward, and severe joint swelling and alteration structure is apparent in his films from the 20s on, especially obvious in his left hand.Certainly from 1938 onward Lionel Barrymore did not exactly slow down in his career. He made about 35 films from 1938 to 1953 in a wheelchair or on crutches if we count from Young Dr. Kildare onward (leaving out You Can't Take it With You, A Yank at Oxford, etc from 1938 and start with the one r[...]



Disability research can be fun! And so can tecfidera :)

Thu, 14 Apr 2016 16:26:00 +0000

...seriously, though, it can be. I've decided to work on an article (or two) on the impact of Lionel Barrymore's Dr Gillespie character in the 30s-40s Kildare/Gillespie series of films. There's been some work done out there on the impact Barrymore's wheelchair use in films (he worked almost exclusively in a wheelchair due to arthritic pain and injury from 1938 till his last film in 1953, one of the very few actors to actually be in a wheelchair and act) may have had on the "normalizing" of wheelchairs and users. Now, it seems the evil 50s undid some of that work on screen, with the return of evil/victim/"super-crip" wheelchair users, but I have to admit, the popularity of the Kildare series and Baryrmore's really high profile is something unique to the time.Anyway, so it's been fun because I get to watch all 9 Kildare films and all 6 Gillespie films for quantitative analysis first (article 1), then take that and work up an article on the impact those films had on public perception of wheelchairs/users.  I'm very glad I can watch them on a computer so I can grab images to help explain what I'm trying to do.  Here's a couple:Lew Ayres & Lionel Barrymore, Dr. Kildare's Wedding Day (LB did play piano and composed--one of his pieces is played at the end of this film)First entrance of Dr. Leonard B. Gillespie in the series, in Young Dr. Kildare, 1938I'm learning a lot about how much work went into creating the character and filming him--Barrymore had by this time been working at MGM for almost 15 years and after he had to use a wheelchair, he made 36 films, not counting narrations. He was considered both too popular and good to let languish, and the Kildare films were incredibly popular and profitable for MGM, which made 2-3 a year.And besides all that, Lionel Barrymore was a great actor! It's been fun to watch the Kildare films and explore his other work. It makes my tired brain, which is finally coming out of a relapse, feel better.To that purpose, the Tecfidera I started seems to be working out. I haven't had any side effects I notice, and my tummy is pretty much made of iron. I don't anticipate tummy upset. I'm not too worried about PML, especially since that month of relapse was horrible. We're still waiting on the ocrelizumab to be approved, which would be fantastic. It was a godsend when I was in the Phase II trial for it 8 or so years ago now (2009).  Even better if it helps PPMS too.Off to work and do more coding and watch more Barrymore. Cute cuss in his time, too:1929, The Mysterious IslandNewest tattoo, LB as Davidson in Sadie Thompson, 1928. I'll be getting his brother John as Hamlet on my other calf at the end of the month. Yes, I have a few tattoos, all of which I can if I choose cover up :)[...]



HAPPY BIRTHDAY!! And grump, grump, grump...

Wed, 23 Mar 2016 17:54:00 +0000

3-21-16

My nephew turns 25 today! I'm glad he seems to be in good health, happy, a good man. Because his aunt is decidedly not.

In honor of MS Relapse Awareness Week, I apparently have decided to deal with my first real relapse in probably 7-8 years. LEGS aren't carrying me, lots of crutching, cane, even wheelchair use now n then since March 5. Doc has me in the old high dose cycle of prednisone, and I'll be trying Tecfidera as soon as the PTB of insurance and pharmaceutical companies do their magic.

I'll admit I'm quite frustrated, annoyed, bummed... At the same time this is going on, our admin is out still waiting to have her baby, summer work is revving, and I have three grad courses I'm trying to do. I didn't really feel anything coming on, but holy cow, I'm just not in a great place with this. Maybe it's just I feel I am so much older and I've been so much more tired.

So f**k you, MS. I want no orange butterfly badges, no attagirls, no questions, frankly. I think I'll just wear a shirt with an image of my two most massive lesions from 2008, on either motor cortex. Sigh.

What a horribly demented disease for someone in education, required and well trained to use a pretty fast mind to have. I mean, honestly, what a terribly demented disease, period.



MS AWARENESS MONTH AND I GET IT, I'M AWARE...

Mon, 07 Mar 2016 17:15:00 +0000

So for two years I organized a zumbathon to raise MS funds in March. This month, no such plans, but I find myself hyperaware of my MS.

I'd been doing fairly well, got off Plegridy because of really uncontrollable side effects, still taking adderall to cope with fatigue. but the last couple of days the fatigue has ramped up into lassitude and I can't even drive and sing along to music in the car because I get SO tired!  Walking is ridiculous, as it takes a huge amount of energy to go anywhere more than about 20-30 feet.

I'm trying crutches now, but they are jarring and it's still quite tiring.  Of course, having a job that requires thinking also wears me out. We will see if I make my night class tonight.

Ironically, I'm revisiting disability as subject for research, spurred by rediscovering Lionel Barrymore. He was in a wheelchair in films from about 1938 on, and did a whole hoop of films prior to his death in 1954.  I've loved his brother John since probably my early teens, but hadn't paid much attention to Lionel except in Grand Hotel until recently. I have been youtube-ing films and find myself fascinated by him. Quite a good, interesting actor. So I'll be looking closely at Key Largo (1948) and how his wheelchair plays a role in different ways. Already know another scholar has done wheelchairs in film and even got an nice response to my email to him. That was quite kind, actually.

I've already worked on John Callahan and Dr House, and I find it funny I knew about but didn't make the connections with Dr Gillespie in the Dr. Kildare movies of the 40s.  Once more, Lionel Barrymore as Dr G!  It's nice to have my brain focused on something specific. I do love research.

But OH, how I'm hating this terrific weakness/tiredness. We will see if the dr is up to seeing me or if I should just invest in that energy-saving wheelchair thing.

(Bogart, Bacall, Barrymore in "Key Largo", 1948)




Wheelchair Kamikaze: Bits and Pieces: MS Diversions: MUST READ!

Thu, 10 Dec 2015 17:45:00 +0000

Awesomeness of this blogger gets me... alwayz!



Wheelchair Kamikaze: Bits and Pieces: MS Diversions: Wow, I just checked and it’s been almost 7 months since I last did a “Bits and Pieces” post. These posts, compendiums of the latest and gr...



WOW it's been a long time...

Thu, 10 Dec 2015 17:38:00 +0000

.. so long so much has changed. I'm no longer on Plegridy-- frankly, the side effects were getting much in the way of work and relationships. I came within a minute of snapping at my boss, whom I adore, and I had already been  on the verge of throwing things at the S.O... and the joints had been a-paining me pretty badly. So I went off it in October, right after my birthday, and I feel much better. an MRI at the end of the year will tell me what if anything has changed. Fingers crossed for Ocrelizumab getting approved next year.

I'm enjoying the fall, though, even if my fatigue tends to be getting in the way of a lot of stuff. I'm only now realizing how very tired I am by the afternoon, even with Adderall to keep me up. Just keeping me awake doesn't mean I'm focused or better at thinking. I also dropped out of a research study on online games and cognitive skills-- I was nowhere near as cognitively disabled as many others, but that doesn't mean I don't feel every lost word deeply. I work with my brain primarily and always have, so the little things like missed words or forgotten trips to the kitchen are paining me an awful lot. I still do read a lot and quickly, but in conversation I feel much stupider.

Overall, I'm fully aware I have been much blessed in my relative lack of disability that can be seen. I have my crip placard and plates for parking, and I use them, as I have come to realize I damn well need to conserve all the energy I can in any way I can. I still have a bit of a limp and on and off use a knee brace or two, but the main issue I am concerned with is cognitive loss, which, apparently thanks to my loooong education ride and mental exercise, is not bad in comparison to others at all.  Well, tough, because when one DOES work with the brain as a major job tool, it's really easy to sense the tool getting rusty.  That has been the thing making me feel most old as I hit mid-forties. Sometimes I feel that if I could just need a wheelchair, I'd be able to cope with changes and frustrations better. There's nothing I can do for my brain I'm not already doing (yes, food, mental stimulation, vitamin D.. trust me, I KNOW the drill) so I think that's why the cognitive lapses are so frustrating. I plan on tying a paper organizer, smartwatch with alerts, my smartphone, and my outlook calendar all together to help me organize and stay on track better and with less "grrr!" moments.

We head to the holiday break busy but overall okay. Lots of vet bills recently, but that's the price I pay for being a cat parent and I would never not have cats! Wishing whoever might read this a peaceful autumn/winter season, Merry Christmas and Happy Hannukkah (to those celebrating), Joyous Kwanzaa, Happy New Year! (Cause at this rate, I'll update again in like, oh, March...)




Random birthday blog

Sun, 15 Mar 2015 18:33:00 +0000

Happy birthday to two brothers, a cousin, and two cat-kids! I'm astonished how many relations were born in March. Hmm. I'm the only member of my immediate family born after summer.

In other news, I have hit my three month Plegridy point! It seems to be working, though now that nerve pain problem seems to be from bone spurs in my neck, not my MS. When it rains it pours!  Trying rehab for it, but things are busy here. Spring break was not long enough!



PLEGRIDY!

Tue, 17 Feb 2015 15:44:00 +0000

...kinda works... this revamp of Avonex is only taken 2x a month (every 14 days), and interestingly the side effects (flu-like feelings) seem to extend longer than the one you inject once a week!

Go figure. But I started it in Dec 2014, and I guess it's working okay. I've developed more irritating physical issues (neuropathy, muscle aches) but my mind seems clearer. Also, the newness of it somehow means I can get it generally free from the drug maker for now (based on income, etc), so really other than the shock of the new, what have I to worry about? :)

I guess everything is stable, though I may be developing other issues concerning neck nerves--lots of irritation on right side. Icing it for an hour before sleeping helped, though!  We'll see what my "new" primary care person says about it--I have not been to a primary care dr since I got back to Texas, except for an 'urgent' issue of infection.  I guess it was overdue to find one.  Really, aren't neurologists generally the primary care doctors for MSers?

**Update-- as of October 2015, I came off Plegridy-- joint pain, anger issues were getting waaaay too much! I'm gonna hope for Ocrelizumab in 2016--I was in the Phase II clinical trial for that and it was WONDERFUL.




two bears, five cats, and two dogs...

Sat, 24 May 2014 14:21:00 +0000

...walk into a bar. No, just move into a new, completely owned house a stone's throw from a lake. Lots of organizing, etc, to do, but it will get done. I'm a little worried my MS will flare, since I've been torching the candle, but one day I'll learn moderation!

Recently started taking generic Adderall...only one 10mg tab a day for extreme, horrible fatigue--decaf latte for me now, please! It has worked quite well, I think.  Definitely feel it if I forget my wee upper!

Boxes beckon me in our just-under 1k sq. ft. home. Ah, nothing like a move!




Wed, 06 Nov 2013 14:23:00 +0000

What the hell is AETNA/other insurances thinking with this "Step Treatment"? Check this out, few readers and NSA types:

"For Tecfidera
  • A documented diagnosis of relapsing remitting multiple sclerosis AND documentation of all of the following:
    • Discontinuation of other therapies used for treating multiple sclerosis while on therapy with Tecfidera (Note: This does NOT require having to discontinue Ampyra)
    • Recent (within 6 months) complete blood count (CBC)
    • A documented contraindication or intolerance or allergy or failure of a one month trial each of the following preferred alternatives, Avonex or Rebif AND Copaxone"  
     
So essentially, poke yourself for two months to be sure you have an allergy, failure, or intolerance to the ABCR drugs before taking a drug that so far has shown promise and works better for the most part than these drugs. And oh yes, you can ask for a medical exception...provided someone is willing to put in the paperwork.

EVERY one of the first line MS drugs have been put on this step list, including Avonex. I'm trying to get my brain around the puzzle... who figured out what one should take before insurance will ok Avonex? Is Extavia ok to use as a 'step' to Copaxone? I mean what the hell?

Oh, I'm cranky-angry. This is stupid stuff.  Can I go to my insurance rep and poke him or her with needles for a month or two and see how tolerant THEY are?

Grump, grrr, bah!



Hmm, well ok...

Sun, 06 Oct 2013 14:41:00 +0000

So, while my MS is really quite "benign" according to my Neuro, and as dean of the school of medicine I hope he'd know, we're thinking of maybe starting Tecfidera. His point, and it is good, I'd that at 43 (as of 10/2), I'll be living with MS a loooong time, potentially. I think we're both sure I won't always be doing well.

I'm more concerned about cognitive issues, though. The ocrelizumab I had in the clinical trial still seems to be having some good effects, though still chronically tired. I'm not sure what to think about the new drugs, either. He likes their results, I don't like having to take them forever.

That's whiny, I know. But I'm entitled. I don't see him for four months, so there's time, and maybe being back home is enough for now to calm my jangled nerves.




Welcome back, now here's your next challenge!

Fri, 27 Sep 2013 14:57:00 +0000

Well, I'm pleased to say I'm back in my hometown after entirely too long in AZ. I find myself having the weirdest kind of mild "PTSD"-- like having bad dreams about being there, dealing with certain people who just are not happy campers or who are simply snakes in the grass... the heavy, uncollegial, suspicious feelings were a lot to take, and I find that I may have to take some time to let them go. I'm still too touchy, too impatient, too sure the other shoe is about to drop.

And I really like my new job, even though it's been a bit hectic. I've not been on it for quite two months, and I have a lot to learn, but I know I can handle it. IF I can handle my own issues from the bad times in AZ.

Then of course, while I have great insurance, I have THIS picture above. It's not too bad overall, I THINK, but I don't know what my new neurologist will think of it.  The little bright spots on the left and right are pretty clear, but the radiology report wasn't panicky or anything.  My main worry is that I may have to go on meds, or he will want me to go on meds, and frankly, that will be expensive. I've been researching LDN, but really...

I took a big paycut to come back home to work at a place I've always wanted to work.  So, needless to say there have been bigger than normal changes. In addition the hubby's mom is quite poorly, and I'm not sure how much longer she'll be with us.  So there's that.

I know I need to take some time, and I know I need to stop feeling imminent dread all the time. Bear joined a MCC church here, and I like the preacher, even if I'm pretty much a heathen.  I kind of wish I could talk to him about my fears, or to anyone, but it all seems a bit pointless. I don't believe there's a supergod above who intervenes. So who to talk to, and to what avail?  So what? It's not like I'm going to get better all of a sudden and wake up with no brain spots.  I will eventually have to take some kind of meds again, and I may end up in a totally pimped-out, rhinestoned wheelchair one day.  That much I'm ok with. I guess I wish I was more okay with being me and realizing I have a lot of fallout form the past seven years to deal with.

Anyway... at the least, new start!



FREE AT LAST!

Mon, 15 Jul 2013 16:33:00 +0000

No, not from my MS, but my heat-intolerant butt is getting out of the maniacally terrible heat of AZ and back home to humidity and FAMILY in Texas! I'm really quite happy to be leaving.... I mean, my neuro is no longer here and why not give someone else a chance to see the bright lights in my head!

I'll also be switching jobs, though still in education-- this time I'll be working with students on the path to potential PhD-hood.  It's a very nice grant program, and I already like the people I've spoken to-- to top it off, it's at my old undergrad, the only school to which I actually give any money! :)

Yes, paycut. Yes, some friends will be much missed... BUT I'M GOING HOME, BABY!!



MS Hugs are not for Wimps.

Mon, 13 May 2013 18:39:00 +0000

Clearly the gods and goddesses of the MS wilds have shat on me again. I spent a month and a half with what I finally realized was the first instance of the "MS hug".  Oddly, it was mostly on the right side, and I and others thought i might have torn my rotator cuff. Nothing really helped, but it finally settled down. Now I'm a little aphasic now and then and have trouble spelling at times. ALWAYS fun.

World MS day is closing in and I guess I don't have anything going on, since we raised money via Zumba for MS. The proceeds, almost 500, went to the Barrow neurological foundation at St Joseph's in PHX. I do admit, though, that I'm ready to leave the hospital when I move to Texas-- both my original MS doc and the replacement neuro have left the hospital.  Indeed, my original doc leaving is really what unlocked the doors to me getting the hell out.  Right now I'm trying to manage with my neuro in town, who is actually going to go back to school in July, and so he'll be leaving.  I think I will ask him if he would prescribe modafinil, as frankly, I'm hating the brain fog and general debility.  It's been an exhausting year so far, and the job has certainly not helped!

In any event, I'm going to have to manage my stress better-- this job ends 6/30 and technically I'll be job and check-less until about Aug 15th. Lovely.  We do plan to move either July or December away from this forsaken place, job or not.  Let's see how that works out-- i mean, there are always clinical trials, right?



Have a heart, save a brain

Thu, 07 Mar 2013 16:52:00 +0000

It's MS Awareness Month. Have a heart, save a brain...

I'm organizing a March 16th St Patrick's Zumba Party to benefit St Joseph's MS Research in Phoenix.  They helped me get my brain and life back... it's the least I can do!

Hope everyone out there is having sunny days, or at least staying warm.
(Brain and heart products of my independent study ceramics class...)