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Jun04

Skirmishing with MS – After Action Report

by Moonwolf on June 4th, 2011 at 11:04 am
Posted In: Musings, Disability, Musings

It’s been two weeks now since I had the Solumedrol infusion (see the “Related Posts” at the bottom for links to previous posts about it), so I figure I’ve pretty much experienced all of the effects, intended and side, of the process and and should finish writing about the whole thing.

One of the important things to keep in mind about all of this is dosages, though.

Looking around the Interwebs before we started all of this, there are a lot of posts about people’s experiences with Solumedrol.  But looking back on it all, I think the majority of those are talking about longer term treatment, and/or a much higher dosage regime.

My dosage was 1 gram of Solumedrol in 100ml of fluid, given over one hour, once a day for three days.  My Neurologist called it “Housekeeping”, to try and reboot my immune system and flush my body of the older materials that might be hanging around from previous attacks.  This seems to be a much less drastic an approach than other people experience, so I’ve got the feeling they’re writing about situations where the corticosteroid is being used to hammer the immune system during a major attack.

If that’s the case, they’re on much stronger dosages of Solumedrol for longer because it’s being used to actively try to shut the immune system down and ameliorate an exacerbation.

This would go a long way to explain why the, being honest, downright scary experiences of others written about online never really reared their heads during my treatment, too.

Which isn’t to say it all went great, though.


During the days after the infusion from the “alien eggs”, there was an absolutely noticeable change in how much energy I had.  I woke up easier and more alert right from the start (mentally at least, my body wasn’t exactly in line with the program on that score and still demanded coffee, and plenty of it!).

Strangely, although this effect seemed to lessen over the two weeks since the infusion, it’s still there but only noticeable after breakfast.  I’m not sure how long this effect will continue, but it’s nice.

It certainly did seem to affect the “speed” of thinking.  My long-suffering hubby had to listen to rapid-fire conversations on pretty much every sort of topic under the sun for the first week (as did people in #scifichat and #steampunkchat on Twitter *grin*), but that calmed down after the first week.

There were aches and pains, for a week or so, but it’s hard to tell if those were from the Solumedrol or were normal run-of-the-mill symptoms everyone gets.


At the two week mark, the knocking out of the immune system is noticeable in one respect: infections that had been dealt with recently have returned, although not nearly as severe as they were the last time.  I’m going to have to monitor those until the next time I can see my doctor.  This was a risk, but we knew it was a possibility and decided that the potential benefits of the Solumedrol outweighed the risk on this one.


The blood sugar issue definitely came to the forefront – the spikes in numbers were positively scary at one point, but after some tweaks by our family doctor and the addition of Lantus to the Novolog he’d already prescribed to head off this side effect, they started stabilizing pretty fast.

At this stage the numbers are pretty much normalizing, and I’ve been able to stop using the Novolog and dial the Lantus dosage way down.  The way things are going, I should be able to discontinue the Lantus as well in another two weeks after our family doctor checks my log book and gives me the OK.

The blood sugar issue is one I think is important for people going to have this treatment to bear in mind, and to work with their doctor to head off at the pass before it becomes an issue during treatment.  Even with basic preparation, it still became a potential problem and needed to be tweaked to keep it in check, something my Neurologist hadn’t told me of, or done any preparation for.

I strongly suggest people talk to their family doctor and be prepared for this side-effect, even if they aren’t diabetics.  This is one of the few things, I think, that can be actively controlled and prevented from getting out of hand with a little application of 8 P’s ((Proper Prior Planning and Preparation Prevents Piss Poor Performance)).


There’s no way for me to tell if the treatment was an actual success.  This wasn’t intended to be a “cure” or expected to restore any of the lost functionality previous MS attacks have damaged, such as walking or memory loss, so nothing much has changed on that level.  I guess my Neurologist can figure something out at some point.

Other than the above issues, everything really seems to have gone smoothly as far as side-effects are concerned.  The effects are, to be honest, disappointing on some levels, because they seem to have been short lived, but as I mentioned there’s no way of telling what effects the evolution has had on the internals of my body, or how it will affect my MS in the near future, so it’d be wrong for me to write the whole thing off as a waste of time yet.

I do know I’ll be happy to be back on my Avonex injections once the Neurologist says I can resume them.

I can’t say that my experience, as mild as it might seem to you reading it, is typical or not.  Other accounts of experiences with Solumedrol seem to all relate to 1000ml infusions, for longer periods, so there’s no way of directly correlating what I experienced with what others have experienced, or what you might be facing in the future.

But for now, the idea of Solumedrol as a “Housecleaning” process seems to not be as dire an experience as I feared.  Hopefully it’ll have done some good, and hopefully my writing about it will give others more knowledge so they can make informed decisions if they face the same situation.

Related articles
  • If I Don’t Treat MS Relapse (everydayhealth.com)
  • Does MS Drug Leave Me Prey to Germs? (everydayhealth.com)
  • How Is Multiple Sclerosis Treated? (everydayhealth.com)
  • Glossary for Multiple Sclerosis (everydayhealth.com)
  • Treating MS With Low-Dose Naltrexone (everydayhealth.com)
  • Letter Re: Diabetic Preparedness – Storing Insulin in a Grid Down World (survivalblog.com)
  • Never, ever, ever,ever, ever, do this in a birthing room. Just trust me. (scottrimer.wordpress.com)
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└ Tags: Methylprednisolone, Multiple sclerosis, Solumedrol
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May29

Sarah Palin and Rolling Thunder

by Moonwolf on May 29th, 2011 at 2:36 pm
Posted In: Musings, Musings, Veterans

The news for the past few days has been full of articles, and a myriad of comments, regarding Sarah Palin attending Rolling Thunder and the start of her east-coast bus tour.

This has gotten beyond a feeding frenzy.  That conspiracy theories would raise their heads wasn’t exactly unexpected, given Palin’s involvement, but it’s beyond ridiculous now.

So here’s the take of one Veteran and regular participant at Rolling Thunder since 2003.

So What?

Let’s look at this rationally (if the people who are likely to read this from either side can ever be considered “rational” on such topics).

A disclaimer before I start however: Anything here is my own personal viewpoint, and does not reflect the opinions, policies, viewpoints, or anything else of Rolling Thunder, National or Chapters, or any of the participants of Rolling Thunder, or Veterans, or … well, anyone really.  These are solely my thoughts, and any errors or omissions are mine.

Rolling Thunder describes two distinct things.

  • There is Rolling Thunder, the non-profit 501(c) corporation organized along the lines of a National Executive and local chapters by states and regions
  • There is the Rolling Thunder annual rally in DC

This latter is an event, which even though its history ties it to Rolling Thunder the organization is not exclusive to members of the Rolling Thunder organization (or even to Veterans for that matter) to participate in.

Sarah Palin was invited to participate in Rolling Thunder by an old member of the National Executive Board.  She wasn’t invited to speak, she wasn’t being endorsed by the organization, she was simply invited to participate.

This doesn’t mean anything because everyone who cares about the issues surrounding Veteran’s affairs, and Missing In Action/Prisoner of War (MIA/POW) issues is also invited to participate, in order to help highlight those things right in the heart of our Nation’s Capitol.

Now I’ll agree that the conjunction of her participation in the Run and her kicking off her east-coast bus tour isn’t exactly what you’d call subtle timing.  But the insinuation of being somehow “endorsed” by Rolling Thunder is just that – an insinuation.

What do you expect, she’s a politician, she sees everything in the grey world of that professional parasite elite class.  She took advantage of timing to give one impression, but that’s what politicians do, they can’t help themselves.  The story of the scorpion and the frog springs to mind

That however is her problem, not Rolling Thunder’s.

Sarah Palin is as welcome as anyone else who cares about the issues the Run highlights to participate, and she essentially accepted that open invitation as well as the specific one made by an ex-Board member.

She’s also the mother of a serving soldier, which gives her an added reason to participate.  You might not like her, you might not like her politics, but she deserves as that if nothing else ((I don’t know if Sarah Palin is actually a member of Blue Star Mothers of America)) (at least for this reason, it doesn’t mean you have to respect her in anything else).

The point is this: She’s not an official event.  She’s not scheduled to give any speeches, it’s not an “appearance”, and Rolling Thunder doesn’t “endorse” her any more than they endorse me – or you.

So what’s the big deal?  Yes, she’ll make it a political event on her sidelines, and she’ll likely spin it to say all sorts of things that it doesn’t actually say or mean in the future, but really – that’s her problem, not ours.  At the end of the day she’s there as a private citizen, and the mother of a serving soldier.

I’ll be honest here, what pisses me off about all of this is the report she showed up at 11:30, 30 minutes before the roll out, and went to the front of the line like it was somehow her due – to me that’s totally thumbing her nose in a display of arrogant entitlement at those who had patiently waited there since 7am (and longer) and would wait until 3, 4 pm before they would be in motion.

If she’s riding like everyone else, then she can behave like everyone else.  She needed to make her mind up just what she was riding as.

Rolling Thunder is about one thing, and it’s not Sarah Palin.  It’s about people like SGT Ahmed Qusai al-Taayie, PFC Bowe R. Bergdahl, and the host of names still yet to come home from previous conflicts, Vietnam being the one most people think of; about ensuring no-one is left behind or forgotten in the future.

That’s the mission.  If someone wants to add their voice to the hundreds of thousands of others raised while the rest of you are off enjoying your Memorial Day BBQ, then I don’t care who they are.  I very much doubt anyone else who’s in attendance will care that much either if it’s for a shared cause.

Neither should you.  You should instead care about why those voices have to be raised to begin with.

The real question is: Why aren’t you here?  Why does it take another Sarah Palin news article before you even pay attention to the existence of Rolling Thunder, the Run for The Wall, the reasons behind them?

I mean, really – even Sarah Palin managed to make it one year …

Think it over while you enjoy your holiday weekend.

Related articles
  • Sarah Palin rolls into the spotlight (thehill.com)
  • Veterans’ Group Spokesperson: We Did Invite Sarah Palin To Rolling Thunder Event (mediaite.com)
  • Rolling Thunder Riders Praise Sarah Palin’s Participation in Rally (sarahpalinblog.typepad.com)
  • Pro-Veteran Spokesman Is Unhappy Sarah Palin Is Stealing His (Rolling) Thunder (mediaite.com)
  • Rolling Thunder to Keep Focus on Troops Despite Palin’s Appearance (foxnews.com)
  • Yes, Palin was invited to Rolling Thunder (hotair.com)
  • Rolling Thunder spokesman slams Palin bus tour as a ‘big distraction’ (crooksandliars.com)
  • Palin Announces Attendance At Rolling Thunder Event; Group Says She Wasn’t Invited, “A Distraction” (alan.com)
  • “Sarah Palin – Venom, Paranoia and Opportunism” and related posts (palingates.blogspot.com)
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└ Tags: Politics, Rolling Thunder, Sarah Palin, Washington DC
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May23

CVS Pharmacy Accessibility Fail

by Moonwolf on May 23rd, 2011 at 8:35 pm
Posted In: Musings, Disability, Musings

 

This is the usual view of the aisles at our local CVS pharmacy.

[youtube xwnjHJ9bc-U CVS Pharmacy Accessibility Fail]

If asked, the store will always try to explain it away as a temporary situation because of deliveries. Their definition of temporary seems to extend to several days – you know, up to the *next* delivery?

Some of the aisles in this clip are blocked by static end-cap displays that were placed half-way across also.

It makes the only practical wheelchair accessibility to their store, including at times reaching their pharmacy section, be via the good old fashioned bulldozer method – if you’re going to leave your crap blocking my passage, I’m gonna move it for you.

Harsh?  Not really.  Why should I have to go bother a staff member and essentially beg for their “help” when it’s something I could do myself if they’d quit trying to rebuild an assault course in their store?

The real irony is that CVS/Pharmacy is supposed to be working on their accessibility problems, as announced in press releases from CVS and the Equal Rights Center at the end of 2010.  If CVS/Pharmacy can’t even find a way to fix all the crud blocking their aisles in 6 months at this one store, then the problems with accessibility aren’t likely to get fixed after 18 months no matter what they agree to.

I mean, come on – what does it take to have someone pick up crates and put them in a back store-room once they’re done with them??

Disclosure: I’ve worked as a web consultant to, and have hosted the Washington Lawyer’s Committee website for several years in the past.

 

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└ Tags: accessibility, CVS, CVS/pharmacy
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May21

links for 2011-05-20

by Moonwolf on May 21st, 2011 at 1:01 am
Posted In: General
  • Look! It's Gini Koch's Webpage
    Gini Koch's novels, "Alien in the family" et al, are funny and worth the read
    (tags: Authors)
  • Semper Fi Fund » Home
    The Injured Marine Semper Fi Fund is a 501(c)(3) nonprofit set up to provide immediate financial support for injured and critically ill members of the U.S. Armed Forces and their families. We direct urgently needed resources to post 9-11 Marines and Sailors, as well as members of the Army, Air Force or Coast Guard who serve in support of Marine forces.
    (tags: Veterans USMC SemperFi)
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May20

The practicalities of romancing aliens

by Moonwolf on May 20th, 2011 at 1:39 pm
Posted In: Writing

The first thing that came to mind when I looked at the IV packs for my recent medical treatment was “Alien eggs!”, and it became a running joke for a while, how each of them was “impregnating” me.

Oh come on now, if you’ve seen my art you already know some of my visions :) ↓ Read the rest of this entry…

└ Tags: alien, Extraterrestrial life
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