North Point's iBand - A Must Watch!!

The Braniac has Left the Building

I've had my propeller cap on all day and it's snug and getting tighter because my head is actually swelling because I've been kicking some major geek-a** projects (I rawk).   So, the hat's coming off, I'm gonna eat some lunch, then pull together some (fun electronic) things to sell after having discovered them buried deep in the closet while hunting for Christmas socks.

Test results...

...conclude, with 100% accuracy, that I can update my blog using my brand new (early Christmas from husband) iPad.  Boo-yah!

This is a test. It is only a test.

Let's see...

Thankful.

Over the past week or two, everybody seems to be giving thanks for one thing or another.  Yea it was the Thanksgiving holiday and all that but it seemed every television commercial, local newscast and web page wanted to know, "What are you thankful for this holiday season?"

Everybody is thankful for family and friends.  I get it although it is a bit vague and redundant [kind of like when a beauty pageant contestant wants "world peace"].  I heard a lot of "I'm thankful for my life" which is just a cop-out. What?  That you're alive? What? More specifics, please.

I somehow managed to not have to share my list, because it's pretty long and I can't always recite it off the top of my head. Yesterday it dawned on me that [D'oh] I have this blog, a place where I can record shit and don't have to remember the details.  I can just refer people here! And I can add things anytime I want, simply by editing.  Sweet! So, here is the list - Version 1 - as of this moment (in no particular order):

- I have a roof over my head
- I don't have a mortgage
- My brother and I get along and I trust him implicitly
- My sister and I get along and I trust her implicitly
- Said siblings both have great kids whom I love *and* like
- I have phenomenal neighbors and we all have keys to each others' homes
- My husband is working
- I know a shitload of nice people
- I had the funds to make my car payment this month
- The course of my life with multiple sclerosis does *not* include unrelenting pain
- My husband loves to wash the floors
- My brother and his wife invite us to their Thanksgiving bacchanalia every year and she is the best cook on the planet
- On Thanksgiving Day - out of nowhere - my 13 year old niece gave me a big, long hug
- Sometimes I recognize my grandmother in myself
- Sometimes I recognize my dad in my brother
- The pantry is full of food
- I have clean water to drink

Now, I've got some leftovers to tackle!

Not appealing

Dear ASPCA,

Thanks for the emails and calendars and greeting cards and return address labels and shit.  Think your money could be better spent elsewhere though.  Anyway I gotta tell ya, when you send me an email titled "Heartbreak for the Holidays", with an attachment?  Not appealing.

Luckily the Delete button is easy to reach.  I'm just sayin'.

Cordially,

One who will not be guilted or depressed into giving you money

Just not feeling it. [Lots of f-bombs]

Dear [unnamed MS forum],

Back in 2005, the New York Times magazine did a small article on you, and how you were something new and unseen.  A place where patients were sharing their most intimate medical information with total strangers and detailing the course of their disease.  Fascinating, loaded with real-world experiences with tests, procedures, drugs and doctors.  At the time, it was a source of really good information [I learned about clinical trials] and if anyone appeared to be gaining financially by recommending a product, they were promptly booted off the site. It was also known that our information would occasionally be aggregated and sold to a pharmaceutical company.  Nothing personal, just some patient stats.  Hey, this is a very well-run, robust forum, they've got to make money somehow, right?

When I signed up I believe there were about 7,000 or so members.  Today there are over 22,000.  But apparently there are barely over 700 who are what's called Three Star members.  Three star members are those who are reporting things like sex, age, height, weight, prescription and non-prescription therapies, lifestyle changes, stuff like that.  In other words, the stuff that can be aggregated and put into a report for a customer to analyze.  That's 0.032% of the total population of users.  So, what are the other members doing?

Bitching
Whining
Obsessing about every. little. thing.
Asking the same questions over and over, ad nauseum [there is a search box where you can find every single post with a word or phrase in it but does anyone use it?  Apparently not.]

Like this [Posts are real, Responses are mine]:

P:  How Much Pain Can MS Cause?
R:  I have pain when I do something I know better than to do like move furniture but I don't think MS has anything to do with it.

P:  Vertigo Has Entered the Picture
R:  And...what??

P:  My Spouse/Family/Friends Don't Support Me
R:  Well honey, I've read back through your posts here and I gotta tell ya, if you behave around your spouse/family/friends the way you behave on this web site, I'd drop your whiny ass off at a bus stop on my way out of town, I mean holy shit!!

P:  Scared to Exercise Now
R:  So you had a relapse after walking miles.  And that much walking is a rare occurrence for you.  Really?  Howzabout this:  DON'T FUCKING WALK FOR MILES IF YOU'RE NOT USED TO IT.  What are you, stupid? 

And today's winner is:
P: Oh My GOD!!! It hurts sooo bad!!
R: Oh for fuck's sake, obviously not that bad because you can STILL TYPE!

Yes, MS is different in everyone.  That is true.  But I really, really, really believe it's worse in those who don't stand up to it.  By that I mean, deal.  DEAL. Whining, anger and pity parties are complete wastes of time and ultimately get you NOWHERE.  So, stop.  Cut it out.  Enough.

It's a shame and I feel bad for the poor moderator. This site is more painful than an afternoon at Chuck-e-Cheese.  Well, maybe not.  I think kids at Chuck-e-Cheese are better behaved.

Just because.

I don't say this enough. I love my husband, he's a good man and I'm lucky to have him. [Doesn't mean he can't piss me off sometimes, though].

You can go now, thanks for stopping by.

Wow,  I've just had my feelings hurt.

More than they have in a very, very long time.

And it sucks.

And I'm trying to cry a little, just so the headache goes away.

And I'm trying not to let it ruin my night.

I'm so glad I'm not the only one (some cussin' in here)

My favorite MS blogger on the planet, Jeri, posted a thought provoking brain dump the other day. She put into words something I've has issues with for quite some time.  In a nutshell:  why do so many people with MS seem to relish negativity?

Like Jeri, I was also a pretty active contributor to an MS forum.  In fact, this particular one I'm going to bitch about is where I found her, but I don't want to wander off topic...

The day of the announcement that the FDA had approved the drug I've been lab-ratting for the past 18 months (Gilenya), a friend of mine said, "Hey are you going to put that on your MS forum?"  (My forum? Where's my revenue?) Actually, I had thought about it for about a nanosecond and already decided that no I wouldn't.  I knew a discussion would immediately follow, decrying the drug as "too unknown", "too new", "too many side effects", blah, blah, blah. I was not going to be the poster that began the discussion! No surprise, someone else did.

This particular forum has a search box where one can type a keyword and get returned every. single. post. having the word in it.  I will guaran-damn-tee you, none of these naysayers did that.  If they had, they would have seen hundreds of posts, going back several years, written by folks like me and Jeri and many others who detailed our individual experiences as lab rats for Gilenya. They would have the ability to hear lots of opinions - good and bad - from patients who actually took the flipping drug.

Instead, they choose to bad-mouth it by simply reading the patient information pdf on Gilenya's web page. Well honey, have any of you read the patient information things that come with every prescription?  They often read like a horror novel (novella?).  I'm amazed that anyone would take any prescription med of any kind after reading that shit.

But we do take prescription meds, don't we?  Because we want help and relief so badly from whatever ails us, we are willing to risk (potential) side effects.

So, my message to the naysayers is this.  If you don't think a drug is right for you then don't take it, I don't give a shit.  And if questioned, simply say, "I don't think it's right for me."  But if you go on to condemn something of which you have no first-hand knowledge or experience, then do me a favor?  Shut the fuck up.

Germy germs

So on Friday the husband gets home from work around dinner time and gives me a kiss then says, "We shouldn't be kissing right now, Mark was out sick today and I think he passed me something."

Really?  Share that after the kiss?  Wouldn't before have been a little smarter? And why are you kissing Mark?

Of course, by bedtime last night I could feel a sore throat coming on.  "Honey," I said "how long was Mark sick before he called out?  Did he say anything about his throat being sore?"  The husband replies, "I don't remember but my throat was bothering me most of last week."

Really? And it didn't dawn on you until Sunday [when I had to ask] to say anything?

You know where this is going.  This morning the throat was sore and dry, accompanied by the sniffling and coughing that are trying to take up residence in my head and chest.

I guess it's just being a Monday...

I'm baaaaaaaaacccckkkk!!!!

Well ok, I didn't really go anywhere, I've just been feeling really good and able to do a lot of cool, fun stuff.  It's kind of almost . . . oh, I don't know . . .  having  a LIFE or something.

Back in February or March I mentioned that I'd gone back to drinking Reliv shakes after many years off.  They were first introduced to me very shortly after my MS diagnosis [twelve years ago holy shit] and I didn't really see how they were benefiting me.  They certainly weren't hurting me but for the price I really wanted to feel something drastic.  Now that I've been feeling so not so good for a couple of years now I figured what the hell, I'll give 'em another try.

Well. My appetite is reduced, my fatigue is basically a non-issue, my depression has lifted [didn't realize just how depressed I was until I wasn't anymore], my vision is sharper, my legs are stronger, I'm getting biceps [!], my skin looks great, the circles under my eyes are diminished, no more PMS and my brain power is returning.

One significant side effect, though.  My nails and hair grow like gangbusters.  My husband keeps absconding with the nail trimmers and I have to shave my legs every frikking day now.

Life is good.  Busy.  But good.  I even wear out the dogs.

 

 

Noteworthy events

Some little things that deserve to be mentioned:

June 19th of this year marked the 12th anniversary of my MS diagnosis.  According to some 'standards' I should be using a cane by now. HA! Not this chicky!  Yet another example of my non-conformity, of which I am proud.

June 26th was my six-month wedding anniversary.

Remember Agnes, the rescue kitty?  Well, she has adopted us as her own, which is good for her because nobody else wants a 15 year old cat.  She's very affectionate without being obnoxious about it.  Around the new year Bo (the husband not the dog) decided that she was cool and did not have to stay caged up all the time.  Nowadays Agnes has free run of the house until bed time when she has to go back into the condo overnight. With cats being the nocturnal beasts they are, letting her wander freely around the house all night means the other animals don't get any sleep.  Which in turn means we humans don't either.  And mama (me) needs her sleep!

OK well, it's July Fourth.  Time to get ready for the Independence Day bacchanalia.  Have fun and be safe!

P.S.  Caught "Zack and Miri Make a Porno" on cable last night.  I was pleasantly surprised at how much I enjoyed it.  I knew it couldn't totally suck because it came from the mind of Kevin Smith (Dogma is one of my favorite movies of all time), but it was actually better than I'd hoped it would be.  Terrific soundtrack, too!  **Note to brother and SIL:  You guys will not like it.

P.P.S.  Also watched something called Choke.  Offbeat for sure, but had quite a lot of humor in it.  I thought, anyway.  **Note to brother and SIL:  quite sure you wouldn't like this one either.

Meltdown

OK, for years I've been buried in paper.  Mail, HOA crap (because once you get on a Homeowner's Association board or committee you can never seem to get off), stock broker statements, magazines, catalogs, blah, blah.  Stack upon stack of stuff that all needs to be either read or filed "one of these days".  I go thru this box every 4-6 months or so and always manage to make a nice dent in it.  Unfortunately, shit just keeps coming.  I have not seen the bottom of the box in probably four years.

What's going on now is, as my life changes, the kind of stuff coming in also changes.  Most of what I call "new" stuff has to be kept and filed. because it pertains to my new business.  Well, with the volume of old stuff still waiting to be dealt with, and the new stuff arriving almost daily, now I'm losing the new stuff amongst the old stuff.

This evening, when (unsuccessfully) looking for something I swear I'd had in my hand an hour before, I reached my limit of stuff.  Simply. Could. Not. Deal.

I isolated June stuff and put it to the side.  Then I took the box - one of those cardboard Banker's boxes one can buy in bulk at any office supply store - and dumped the whole bloody thing in the trash bin.**  Then I emptied both litter boxes on top.  Before the next trash pick-up day (Tuesday), I'll pour a liquid of some kind (about-to-be-spoiled-milk would be perfect) over everything. If anyone want to burrow through it, I wish 'em the best.

I have a big bottle of Clorox Cleaner with Bleach and a hose for after the trash truck leaves.  So, cleaning up after my meltdown will be easy.  And, neither of those will ever need to be filed!

I can see the bottom of the box now!  Shortly I'm going to break it down flat and put it in the recycle bin and send it to cardboard heaven.  Man, am I gonna sleep good tonight!

**If you're concerned about what I did, rest assured there are no uncashed or blank checks, credit cards, prescription drugs, needles, weapons or statements with personal info on them.

Clinical Trial Testing New Multiple Sclerosis Treatment to Launch in Buffalo

Clinical Trial Testing New Multiple Sclerosis Treatment to Launch in Buffalo

One year ago tomorrow, we lost our beloved Wags. I can't believe how much I still miss that dog.

http://estreetanne.blogspot.com/2009/06/my-wags.html

You Say Gilenia, I Say Fingolimod

Still struggling with the new name of this yet-to-be-approved MS drug.  I admit, it took about two months for me to properly pronounce 'Fingolimod' but really, people, Gilenia?!  I'm sorry.  It still sounds like a gynecological infection.

Anyway.  Speaking of Gil [can't nickname it 'G' because there is apparently an illegal recreational drug called that], my favorite blogger Jeri has posted a Novartis press release announcing the FDA is extending their review period from June to September.  That kind of sucks, but better safe than sorry I suppose.

Also today I got an email from the study nurse here, reminding me of my next visit on June 2nd.  That'll be #11.  Not sure why, but it feels like I've seen them more than that!  Well, no matter.  This is going to be an easy one.  Labs and some neuro tests (oh boy, MATH!!) which should take less than two hours.

I told her it would be very cool if they had a check for me.  The one they promised if I would undergo a cardiac ultrasound.  Which I did.  Three months ago.  Good thing I'm not holding my breath on that!

A trip down memory lane

Since starting my Reliv business, I've been reconnecting with people I haven't spoken to in quite awhile. Two of those people were born and raised in Philadelphia, although they both now live elsewhere. Anyway, last night the Philadelphia Flyers earned a place in the Stanley Cup finals (that's hockey for those of you who are uninformed).

We got to talking about hockey in the 1970's. Back then, players did not all wear helmets, mouth guards or face masks. High-sticking and hooking and tripping the opponent was a normal part of play, as was a good, bench-clearing brawl. A game wasn't a game unless somebody was bleeding or had lost a tooth. And the amount of time a player spent in the penalty box was worn like a badge of honor.

Having been raised in the Buffalo area, Sabres hockey was a huge part of life. After listening to these two Flyers fans go on and on about the impending Stanley Cup victory - and the series hasn't even started yet - I got to reminiscing about Sabres hockey in the seventies. Our stars were Gil Perreault, Rene Robert and Rick Martin, an offensive line collectively known as The French Connection. On defense there was Don Luce and Craig Ramsay, both of whom lived on my street!

The Sabres and the Flyers met in the 1975 Stanley Cup finals, which boasts the only time fog almost ended a hockey game. Oh, and then there was the bat incident.

My family relocated to Atlanta in 1977. That winter, the Buffalo Sabres came to town to play the Atlanta Flames and I was so excited because it was im-possible to get a ticket to a game when we lived in Buffalo. I was devastated when my father told me he was taking my brother. I mean, seriously!!

My despair was somewhat assuaged when my dad came home from that game and presented me with a program nearly covered in autographs from nearly the entire Sabres team. Apparently, after the game in Atlanta all the fans clamored outside the Flames locker room, but hardly anyone wanted to meet a Sabre. So, the two of them were able to catch the eye of our former neighbor Don Luce and were given free reign to hang out with the whole Buffalo team in their locker room! I had teen fantasies about that until I was probably in my mid-twenties.

I think I'm going to have to figure out which cable channel here in the Deep South is broadcasting the Stanley Cup this year...

I have seen the future...

...and I returned it for a refund.

Here's what I did. After dreaming about the iPad [yes I really did dream about it] and knowing full well there was no place for it in my life or my budget, I ordered one once I found out that I could return it within 14 days. I ordered it online the day before it was released. I had buyer's remorse the absolute minute I hit the Submit button but didn't cancel it right away like I should have. So in the two weeks before it arrived, I read every possible review I could get my hands on, both positive and negative.

It arrived on a Monday. UPS delivered it at 6:00pm. By 7:30pm I knew without a doubt in my mind that I'd be sending it back. Yep, it's sharp to look at and comfortable to work with, has beautiful screen resolution and the keyboard is to die for. But to do damned near anything requires additional dineros and even then it doesn't do as much as I ultimately would want. I called Apple on Tuesday and almost immediately was emailed a FedEx shipping label. On Wednesday I delivered it to my local FedEx office and on Saturday I received a message from Apple confirming their receipt and subsequent credit to my Amex card.

So, for a [relatively] small financial investment of $50 for a restocking fee, I got rid of my iPad dreams. For now. Check with me long about the time of a V3 release. This thing has the potential to rock the world of personal computing. Just not yet.

That's not my name

So, prior to getting married I had decided I was going to become a hyphen.  My last name is relatively short, his even shorter, no big deal.

Then I tried writing it a couple of times.  Crap, what a pain in the a**.  Then I listed all the places to notify - DMV, Social Security, bank, credit cards, etc.  Crap, waaaaaaaaay too much work.

So I made some calls to those whom I consider knowledgeable on the topic.

Here's the result.  Socially, I'll use the married surname.  Professionally and and legal documents I'm going to maintain the status quo.

I wonder when, if ever, he notices.

Brain farts

Okay so, my first week on these Reliv shakes has been only positive.

• Brain fog is clearing
• Have only napped once this week, and that was the afternoon my period started
  
• Can walk farther before my legs give out. Not significantly farther. Just a smidge. But I'll take it!
• I'm reducing Claritin and not sneezing my brains out...as much
  
• And let me tell you about my poopies...!

A few months ago I bought in to a company called Tastefully Simple. I love this stuff and naively assumed I'd be able to easily talk people into buying some product because I am so excited about it. Then...Bo's mom came for a visit, stayed for 12 weeks and I totally let this slide. But I'm back to it and working hard on it and hope it can soon start to pay off for me.

I wish my new husband will get off his hiney pretty soon and jump through whatever a hoops a veteran needs to jump through to get some medical benefits for his new spouse.

The uber-blogger Jeri posted this yesterday about the drug study that we're both on. Exciting stuff, but I really detest what this drug is going to be called. Gilenia? Sounds like a gynecological infection to me.

Said drug study is asking lab rats at the one-year mark to undergo a cardiac ultrasound, which I did this morning. The financial incentive, while very nice, was not necessary for me, I would have agreed without it. I'm taking it of course, I'm not an idiot. It's nearly a car payment!

Hubby and I are both kicking ourselves for putting our dog Maggie through that knee surgery a few months ago...it ultimately failed and healing has been really slow. She has forgiven us, though.

I've been enjoying the hell out of the Olympics this year.

'Kay, that's the latest. Be well, everybody!


see more Lolcats and funny pictures

Been there, done that

So yesterday I get a phone call from a neighbor, inviting me and Bo to her home on Saturday. She and her husband are "starting a new business" that they want to share with their friends. I had to decline because we already have a commitment for that night. So then she invited me over this morning for a tea party [not a Tea Party tea party, just hot beverage and muffins and fruit].

When I arrived, I see she has her kitchen table all decorated with booklets and products from a company called "Reliv". I remembered how, very shortly after my MS diagnosis in 1998, a family friend introduced me to Reliv products and I used them for a few years. If memory serves, this was from early 2000 to early 2005. Can't tell you exactly why I stopped, I think I was just bored with them.

I also remember not having a flare, being able to walk my dogs for a mile every day and having the stamina to work 55-70 hours a week at my job (!), which has not been my experience since late 2005.

This gave me pause...did I remain as healthy as I was then because that was just my disease course...or was Reliv actually helping me?

So yeah, I'm giving it another try. I've committed to 90 days. I'll keep you informed.

Hey, do any of you use Reliv? Or have you in the past? Please let me know about your experience!

A date...that'll live...in infamy

This past Christmas...well, the day after actually...marked the 101st wedding anniversary of my great-grandparents, Elizabeth and Edward. They were both 23 years old.

It also was the 50th wedding anniversary of my parents, Elizabeth and William. Look at this picture, aren't they cute?

So using the same day, Bo and I exchanged our vows in 2009.  Since Bo has issues with his image being posted on the internet, here are the backs of our heads (that'll show him, huh?):

It was an overcast day and too cold for me outside in a sleeveless dress!  The fur I'm wearing was my mother's.  And here's the ring, in it's permanent home:

And finally, here I am:

I know I don't look happy, but I really was.  Honestly, I was premenstrual (hence the zits) and tired.  Lesson learned:  never allow pictures without lipstick.

Oh, here's the cake. 

My sister-in-law surprised me with the same cake knife my parents used at their wedding!  That was very, very moving.  I missed them very much that day and really wished they were alive to be with us.  They would have loved Bo and he them.

So, it's official.  Well...almost because I still haven't mailed it to the State of Georgia yet for filing.  Seriously, I can't find my stamps.