Cool is cool

I gripe a lot about heat intolerance, a symptom shared by the vast majority of MS patients, and especially about the unprecedented heat and drought we've been dealing with here in Texas. It's a really big deal for people with and without MS. Time Magazine says that "Texas' drought may have global effects".

Anyway, I just wanted to say that FINALLY it's eased up. We broke all kinds of records but it hasn't been over 100 degrees F for over 2 weeks. Whew! Some days we don't even hit 90. 

It even rained. (Once.) 

So I'm cool now too. I can go outside and sit. I can think more clearly. I have choices. I can do errands and not have to return to an oven-on-wheels. I'm not stuck inside like a salad in the fridge. I feel so much better.

StaCool Vests

FYI, if you are sidelined by heat intolerance, there is personal cooling equipment available (vests, wrist and ankle wraps, etc) available to MS patients. They say that wearing a cooling vest can enable a heat-intolerant person to participate in aerobics or outdoor activities involving exertion. Check with the MS Association of America; or you can call the M.S.A.A. at 800-532-7667 for information. 

There are also numerous for-profit private businesses, like StaCool, offering self-cooling products, private-pay. Just Google "cooling vest for multiple sclerosis".  

Personally, I use ice packs, or just plain old ice in a bag. But the vest would probably be better. Somebody try one out and let me know, OK?

Chill!

On MS and Memory Issues [or, OMG I Forgot To Reorder My LDN!]

I try to keep up with things, I really do. I hate screwing up. Carelessness pisses me off whether it's in me or in others. I especially hate wasting other people's time and resources by messing up and forgetting something- that's the worst.  

I know, we all blow it from time-to-time. But for about 10 years now I've been busily forgetting things roughly from the time I wake up until the time I fall asleep. Which makes me feel like a total screw-up, but I try to remember to forgive myself each time I mess up, although it's hard and not always possible if I've blown it badly. But at least I resolve not to repeat the same mistake again if I can possibly help it.

Meanwhile, I make these over-the-top memos for myself- obsessively well-formatted signs and notes, usually illustrated to some extent, and sometimes I even laminate the silly things! But I still sometimes forget to look at them.

One of my silly laminated reminder signs- helps out on watering day

Posted on a sliding glass door, to remind me not to let Claude the Blue Lacy (my dog) out while thirsty wild critters are visiting

I used to rely heavily on my cell phone's alarm feature for reminders, but unfortunately the alarm stopped working reliably months ago, so that's that until next year when I'm eligible for a new phone. Which brings up another issue I've been wondering about; am I smart enough for a Smart Phone? Well, maybe. Just barely. I have to admit I dread learning how to use tricky new things...in fact, I avoid it; way less stress. I know, it sounds lazy, but you know what they say; no pain, no pain.

See, my memory trouble usually arises when I try to hold a simple thought or plan in the back of my mind while I attempt to do (or just think about) something else. 

It's really just simple, two-layer multi-tasking, which was never a problem for me before MS. But trying to hold a thought in my leaky brain now while focusing even temporarily on something else hardly ever works, and I guess I've adapted to it by not attempting it if I have a choice. And luckily, most of the time I can still manage to recall in time that I'll probably never keep things straight if I try to do more than one thing at a time....

So what to do?

Well, my first line of defense when I realize my brain is getting overwhelmed is to stop everything and focus on just the most important thing, whatever that is at the time. (Usually simply updating my calendar takes care of it.) The rule here is relax and take one thing at a time. And above all, I don't let myself get stressed. Keeping things loose, light and easy has become the most normal, natural response for me. Life's tricky enough without riding your own back all the time, right?

Don't get stressed; keep it light

After all,  I'm not on a deadline-I can afford to take a break and resume whatever it was when my head clears.

The commonest multi-tasking situation that arises in my life these days that gets me overwhelmed is on ancestry.com. 

So far I've got almost 15,000 people dangling on my family tree, going back past Saint Constantine, Emperor of the Roman Empire (my 43rd great grandfather), and I've got 17 other, much less complicated  trees working as well. This genealogy stuff really interests me and is a perfect challenge; for one thing, I learn a LOT of stuff. 

But connecting one family tree to another on that site involves multi-tasking on a level that would have been a challenge even before I got MS, so I've found it best to work on this stuff a little at a time. More importantly, I've learned to let it go gracefully as soon as it gets too complicated. Just let it go. When I get stuck like that, typically I have several Windows open at once with info I'm trying to compare and consolidate.

Inevitably there's a point where there are more levels than I can even see at once, if you know what I mean, and I almost feel something shorting out in my head. Not literally, but that's when I know I've tried to go in too many directions at once and have, understandably, lost my bearings....at which point I just close everything and take a break. Maybe I play a bit of Tetris or something; pretty much anything off the ancestry.com site. As long as I avoid anything that demands complex multi-tasking for awhile. 

In circumstances when I have to manage to juggle two things at once,  I employ what I guess you'd call a "memo-mantra", sort of a chant I literally mutter to myself unceasingly ("the water's running, the water's running, the water's running, the water's running") until I can, you know, turn off the water or whatever. 

It's like the back of my mind has this very steep, slippery shelf off of which things always tend to roll... off into a void. I have to work hard to hold that extra thought on the shelf and it doesn't always work. Usually I find it best not to attempt multi-tasking in the first place. Like I said before, one thing at a time.

Along with my inability to multi-task, I also noticed (starting almost 10 years ago) that I'd become a klutz; all I've really figured out to do about that is to move very slowly and deliberately so as to avoid wrecking things. It doesn't always work by a long shot, but it's all I got.

And OMG the most frustrating thing is that I lose things all the freaking time!  I spend a huge amount of my time looking for stuff that I swear I just freaking had!  It's maddening! 

And I'm always forgetting what I was saying, which is just more multi-tasking FAIL.

I often wish my life had TiVo, so I could push a button and go back to find out what the heck I just thought of and so quickly forgot. (Uh, what was I just saying? Crap. I know it was important...oh well...)

In fact, memory problems were the main thing that motivated me to get a head scan in the first place, the results of which led to my MS diagnosis. 

I was doing medical coding in a family doctor's office when all of a sudden I found I couldn't remember the code for hypercholesterolemia (it's 272.0), an ICD-9 code I'd used countless times every blessed working day for years, but all of a sudden I couldn't think of it. 

I felt so  freaking stupid.

I was pretty sure about the numbers involved (I thought there was a "7", a "2", and a "0", with a decimal point after 3 digits and then one of those numbers repeated after the decimal), but I had no idea about the order of the digits. 

Finally I actually had to look it up, which was on par with forgetting how to spell my own name. It was, "OK, I want a head scan and I want it now!"

Anyway, if all else fails, a sense of humor helps immeasurably as your marbles slowly roll under the fridge where you'll probably never be able to find them again....


My most recent screw-up involves my LDN. I was taking my bedtime meds night before last when I came across a little card in the slot that said "Need LDN".

Shitshitshit! I was supposed to order a refill on the 1st when I got my check, but I totally spaced it out. (Insert more cursing...)  

Obviously I should have thought to put that little "Need LDN" reminder card in a slot that I would have seen several days before I ran out, in time to get a refill, instead of on the night when I'd be out already. Oh well, another lesson learned.

Anyway, as of two nights ago, I've been off LDN because I'm out, and I won't have any to take until at least Thursday or Friday, maybe later. The compounding pharmacy I use is closed until tomorrow because today is Labor Day. They'll send it (Priority Mail) because Aurora Illinois is too far from Austin Texas for a routine road trip to pick up a refill....(duh) 

Well, hopefully my immune system won't notice the oversight. (Ha! Good luck with that, right?) 

The only other time I couldn't get my LDN for a week or so was back in '05, and I wound up with an exacerbation involving a world-class case of labyrinthitis. I literally had to hold my eyeballs still with my fingers! I was left with chronic dizziness. 

I'm hoping this week's brain fart won't lead to any permanent drama; meanwhile all I can think of to make more endorphins while I await the refill is to exercise- so I'll go to the gym later to work out....if I can remember to go...

Oh crap, I just realized that they're closed for Labor Day too! (Insert more superfluous cursing referencing feces)

Oh, and speaking of meds (well, I was, remember)....obviously it's important to remember to take them, and I have to remember to take a small handful of meds and supplements twice daily. So I've found that the simplest, surest way is to set up two weeks' worth of my meds at a time,  which I store in two clearly and heavily labeled, slotted trays; one tray for morning, the other for bedtime. 

This is not a foolproof system, but at the very least I can say that every screw-up has led to a new innovation and fewer mistakes afterward. 

For example, I found it helpful to make little cards with the days of the week on them to put into each little slot, so I can tell at a glance whether or not I've taken my meds yet; otherwise I have no idea. None.

Bedtime Med Tray

Inside the bedtime med tray

Morning med tray

Inside my morning med tray

I've shared all this silly minutiae not because I imagine it's interesting to anyone, but in case you're dealing with similar issues. At least know that  you're not alone if it's any consolation, and that there are ways to manage things if you try. Hang in there, and hey, if nothing else, work on developing that sense of humor!

Sometimes in life, whether you have MS or not, whether you have memory problems or not, it helps to think creatively and to be ready to improvise, to let go and go with the flow. I've learned that I can't afford to be too attached to things the way they are; attachment brings even more suffering to MS patients than to most people.  

Be flexible. Make plans, but make 'em in pencil.

Coping with a Long Hot Summer

Eight years ago when I was diagnosed with MS, I was living about a half hour west of Austin on 10 acres with a beautiful view, lots of wildlife, wildflowers, woods, fresh air and quiet....but no running water and no a/c or heat. 

I was 52 and roughing it was getting old, MS or no MS. I dealt with the summer heat and the ongoing lack of running water partly by showering at my gym every day. And swimming in Barton Springs Pool, a sacred swimming hole in Austin that's a brisk 68F year around- very refreshing. I was still rehabbing myself from a back injury, and was a fanatic about working out and swimming laps. My exertions were slow and steady, never intense (a turtle literally passed me in the pool one day), but it felt so good and kept me moving, and cooled me down very effectively.

Out-of-towners tend to shriek when that icy cold spring water hits 'em...

Elevated body heat - sometimes even a fraction of a degree- can be a real  problem for MS patients. Most of us do best when kept cool.


Here in Austin we're experiencing the hottest summer on record, as well as a truly brutal drought. The average high temp in August was 105, 9 degrees above normal.

Personally I suspect we're being punished for electing Rick Perry, the phony-baloney jerk....

I check the National Hurricane Center every day, looking for signs to hope that something might improve; this time of year we look to the tropics....


And the drought...my parents lived through the Dust Bowl and my own childhood memories are set against the Drought of the '50's; "drought" was the first grown up word I remember hearing and fearing .....


....but it was nowhere near this hot back then. Temps have reached as high as 112 this summer, and it's been 106F almost every week, sometimes hotter, and over 100F almost every single day.

If this is the new norm, we're screwed.

Desperation brings a grey fox to South Austin backyard for a drink; cat wisely decides to share

As I count down the days to October (25 days, 5 hours, 15 minutes and counting) when the 3-digit highs will surely be gone for a few months, I have my little strategies; they're not much, but it's all I got...


First, I stay inside (duh). Between 9am and 10pm, unless I have no choice, I stay inside where the climate is controlled to about 75 degrees or less. The cooler it is, the better and smarter I feel, but I can't afford to fully indulge my love of frost. 

You know, this Thanksgiving when we go around the table listing what we're thankful for, I really must remember to mention air conditioning, ever though the holiday season makes it easy to forget. I really am truly thankful that I have the luxury of living in a house with air conditioning. Now if I can only think of the right Lotto numbers, I'll move about 1,000 miles north in a New York minute. Seriously. It's not only too hot here, but Texas gets stupider with every election. 

Second, I use ice packs (I keep several in the freezer) and drink a lot of icy cold water. Popsicles are a major food group for me this time of year too, and I have a little snow-cone machine for the shaved ice. Love that shaved ice!


Third, I NEVER get into a hot car. That takes planning and sometimes sacrifice (in that I have to decline invitations that would involve my melting.) Sounds silly I guess but it's a good rule for me.


Fourth, I inspire myself with images of cold things. My computer wallpaper features icebergs and glaciers.  Hey, it can't hurt.

MS Patients and Others Against Global Warming

The Earth is getting warmer, a fact that has never more obvious than in the last few months here in Texas.

In Austin the average daily high temp for this month (August 2011) is averaging over 104F; that's not normal here. Or at least it wasn't. The reality of breaking heat and drought records on a daily basis wins us nothing, not even a plaque; it just sucks. 

Yesterday we reached the all-time record for most days over 100 F; the previous record, 69 days,  stood since 1925. We'll break that record in a couple of hours, and tomorrow we'll break the record we'll set today, and it goes on and on. 


Huge trees that made it through decades of storms and droughts are dying in record numbers, grass and ground cover are turning to dust, farmers can't grow anything but debt and ranchers are as desperate as their cattle.

Doomed Texas cow

We all hope this hellish summer is an anomaly never to be repeated, but it really doesn't seem so when you  study historic records. It's a strong warming trend, and the rate at which things warm up is increasing rapidly.    


So what does this have to do with MS patients? When you consider that about 80% of MS patients suffer from heat intolerance to some degree (no pun intended), the connection is obvious. We're more negatively affected by heat than most people are; when our body temp rises as little as a fraction  of a degree, we tend to experience an increase or worsening of our MS symptoms, particularly weakness. Simple everyday things like getting into a hot car can completely take the wind out of the sails of an MS patient for hours.

The remains of a typical Texas fish in the remains of a typical Texas lake.

As a matter of fact, at this very moment I'm recovering from too much activity in the morning heat. We have water rationing here and today's our watering day,

...so I'd been outside dealing with the sprinkler, adjusting a soaker hose, and hand-watering when it gradually got too warm. Or I got too warm. So I decided it was time to call it a morning (outside activity-wise) and tried to come back inside to cool off but found that I was accidentally locked out. After much banging on windows and doors, my usually flawless roommate finally heard me above his headphones and let me in, absolutely mortified and guilt-ridden, bless his heart. Anyway, I've been back inside with the a/c for about 30 minutes, and as I write this I'm sitting with a large ice pack on my back, fans blowing on me from three directions as I drink ice water. I've stopped sweating and feel much more comfortable now, but I'm as literally limp as I've ever been without general anesthesia. In a few minutes, I'll turn off the fans and set the a/c to a warmer temp as I get on with my day. The thing is, getting overheated like that leaves me limp for hours; I feel like taking a nap but I'm not exactly sleepy, just profoundly weak; my fingers feel weak and stupid as they stumble all over the keyboard; writing this is taking forever.


None of this is a big problem as it used to be since I retired on disability; when I was still struggling to work there was more stress as I tried to fight the effects of Texas heat and MS in general.


Anyway, it occurred to me that those of us who are especially affected by the heat might as well get together and make our voices heard in  the fight against global warming.

And yes, I totally get the irony of depending so heavily on air conditioning when it's use indirectly contributes to global warming; it sucks. I don't like needing a/c but dammit I do. I grew up without a/c but that was in the'50's when I was young and healthy and didn't have MS. And although we were in a drought then too, it wasn't this hot. It's never been this hot. But we're doing what we can to conserve energy....and water.

Our current  governor, Rick "Goodhair" Perry, who seems to be the leading GOP candidate, says that global warming is a hoax and he will have none of it. (Did that make you feel any cooler? Not me.) He said last Wednesday in New Hampshire that global warming is “a scientific theory that has not been proven.”

In his book, Fed Up! he called it “all one contrived phony mess that is falling apart under its own weight.” (Hey, takes one to know one!)


Of course, Perry also denies evolution and other proven facts supported by not only science but the fossil record, yet ideologically inconvenient to evangelical Christians. He's cast his lot therefore cannot and will not acknowledge anything with which his Tea Party base isn't on board. And many if not most of them are of the belief that the flat  Earth is 6,000 years old. (And the Dumbening of America proceeds at breakneck speed.)

How do they manage to make themselves believe the nonsensical in the face of overwhelming evidence against it anyway? Twenty years ago I would never have thought that the mainstream of one of the major political parties in the US would be so proudly dedicated to ignorance and superstition, but there it is.

 So as the temp rises and we break yet another record (ta-dah!), Perry brushes his hair back as he waves from his Humvee limo, thinking all this fuss about global warming is all very funny.

Jerkus Texanaus

Maybe another special interest group will appear; "MS patients against Rick Perry"...

T-shirts and Bumperstickers and Coffee Mugs, Oh My!

If you want to display your support for LDN as a treatment for MS, here are some easy ways to do it:

LDN for MS women's fitted t-shirt from cafe press (shown in pink); small-XL $24.00 ea

  

LDN for MS bumpersticker from cafe press, $4.50 ea

LDN for MS coffee mug from cafe press, $12.00 ea

LDN for MS white t-shirt from cafe press, sizes up to 4XL, from $17.00;  $20 for 2XL-4XL

LDN for MS men's t-shirt (black) from cafe press; starts at $17.00

About Herpes and MS

First, a quick update. It's late March, 2011 and I'm still doing really well, and of course still taking LDN, 4.5 Mg at bedtime. 
FYI, I'm still getting it via Priority Mail from The Compounder Pharmacy in Aurora, Illinois, but there are other trusted pharmacies who have a good track record of compounding LDN properly. There is at least one very good compounding pharmacy here in Austin, Texas, too, but when I asked, they didn't seem aware of the importance of using the correct binder with the Naltrexone, so I stuck with The Compounder; . It costs me a little over $1 per day including delivery; compare that to the cost of the "conventional" treatments!

The only other "medications" I take (relevant to my MS) are supplements, except for Amantadine, all prescribed (or at least suggested) by my oto-neurologist, who believes strongly that herpes is the viral component involved in MS and in chronic inner ear conditions. And I'm doing so well that for the last year, I've only been seeing him every 6 months, to do follow-up testing to reassess my chronic inner ear issues (which are much better), and to maintain my prescription for LDN.

About herpes: While MS is still one of the more mysterious and unpredictable diseases around, most experts agree that there is an important, non-contagious viral component to MS, and many believe that we (MS patients) have a particular vulnerability to herpes infections.

I've never had Herpes I or II, but like many MS patients, I've had a lot of other herpes infections....

To start with, as a baby I had herpes angina, aka herpangina (basically, shingles on the inside of the mouth and throat, very painful); later in life I had it again as well as "regular" shingles (herpes zoster). As a child, I also had chicken pox (but everybody got that before the vaccine), an extraordinarily bad case of mononucleosis (with a severe relapse that was misdiagnosed as Hodgkins Disease), and pityriasis rosea (a relatively unimportant, self-limiting rash, believed to be caused by herpes VI).

Then, as an adult, like most MS patients, I tested positive for the Epstein-Barr virus (herpes IV), and there's my chronic labyrinthitis, which as I said my doc believes is also from herpes, probably herpes VI.

For these reasons, my neurologist, who is very much into Complementary and Alternative Medicine, has me on anti-virals. I used to take Valtrex, which works well, but that was when I worked in a family doc's office and had access to free samples; I can't afford to buy it. I've also been on Acyclovir and Amantadine, now just Amantadine.

Some of the supplements are pretty specialized, like "Neuro-transmitter Support" and "Neuro-Immune Infection Control". Others are generally supportive or immune-supportive, like CoQ10, DHEA, anti-oxidant blend, EPA & DHA, Bio-C complex, etc. (I'm only listing this stuff because I know from experience that people will ask, but I'm not suggesting you take any of it.)

For the last few years, I've been doing so well that I've rarely even thought about having MS anymore, although I realize that it could change; I know that, statistically, I'll probably develop Secondary Progressive MS someday, but I'll jump off that bridge when I come to it. For now, I don't really do MS; its been years since I searched the internet daily for MS news. I'm only updating this now so people won't assume that I died or something!

I turned 60 this year and am hangin' in there just fine. I always hope to hear more about LDN being tested and available, but since no one has a vested financial interest in it I'm not holding my breath....

Well, I guess that's more than enough verbiage from me. While there is no way for me to guess what the course of my disease would have been had I stayed on the conventional treatments, I have no doubt that LDN has made a positive difference for me, and that, at the very least, it's completely harmless. If you have MS, I hope you get a chance to try LDN. Like I've said before, I wish I'd tried it sooner, and that I'd never tried the other stuff....