Mark.Net

Well I’m afraid that waiting for me to post might be akin to waiting for the entropy of the universe to approach infinity or six months, whichever comes first. Lucky for you and me and everyone else it’s the latter.

So, where did we leave off? Ah yes my reaction to the diagnosis.

Quite frankly I was relieved. Let’s digress a bit…. Why the F is relieved spelled r e l i e v e d. Why isn’t it spelled releaved? That’s the way it rolls off my fingers time and time again until I see the obnoxious red squigly line underneath it telling me I’m stupid.

So I was relieved and I called my partner and Mom on the telephone to tell them of said relief and it quickly became apparent yet again that no one could actually understand me.

*sigh*

Eventually, I got my point across and went back to the scour the internet in earnest with the new words I had learned. “Spasmodic Dysohonia” “Abductor” and “Adductor“. There’s quite a bit of information out there. Lots of purported cures, remedies, etc. “Hey let this cow lick your head, you’ll be cured”

OK, nothing that outlandish but I’m a western medicine kinda guy and I think chemicals can cure everything so I decided to take my physician’s advice and try the one widely suggested treatment of botox injections.  When this was first mentioned I had the same reaction that anyone whom I’ve ever talked to about this and that was.. isn’t botox for people who want to have a permanent smile? or look freakishly non-emotive ?

I have since learned it’s used for non-cosmetic reasons as well, and it seems to help a lot of people with various muscle disorders. I found some pictures of a botox injection for SD and while I’m all for transparency and full disclosure I’d rather not have seen them. Scared the hell out of me, and the funny thing is when it’s being done to you, you don’t really see it anyway, so my advice is don’t look at the pictures.

I decided to make the appointment to have the procedure done and honestly it was a bit of a hassle from the insurance company side. Not that there was any question that it is an approved expense but I had to go through a “special” pharmacy to order the botox and have it sent to the doctor’s office. The only thing “special” about it was it took longer than it would have if I had grown the bacteria myself and siphoned off the toxic fluid with a mesh straw.

Off I go to the appointment where the doctor explains everything that is going to happen and tries to relax me. She didn’t know I had looked at those pictures on the Internet but she might have suspected seeing how nervous I was. In my mind I was about to be impaled to the table with a 7 foot spear through my throat.

Anyway, they apply some “things” to my neck etc. that will sense the mystical energy of my innards while she pokes me blindly with the needle seeking out the “right” spot to inject the bacteria toxin, all the while asking me to say “EEE” while I’m being jabbed in the throat.

Fun.

Ok, It’s not exactly like that but it’s pretty close. They do use the sensors on your neck to sense the electrical impulses traveling through the nerve that is attached to each of your vocal muscles when you say something like “EEE. The doctor can tell from watching the oscilloscope-like device when they are in the right place to stick ya. Honestly the botox injection is really not bad at all.

The part before that is the bad part.

Before they inject you with the botox they numb you up a bit from the inside. Yeah, inside. In goes the needle and they spray lidocaine in your throat and the doctor asks you to cough, as if anything else other than that could possibly occur in that moment.

I can tell you this. I hate the lidocaine part of the procedure more than anything else. I hate it more than I hate coffee, more than I hate butt sweat. It’s pretty bad. I surmise that you don’t actually need the lidocaine, it’s just there to make butt swaet or the botox injections seem less annoying in comparison. I’m too chicken to test my theory though

So, after the 5 minute procedure I’m out the door and on my way. Curiously, I could talk pretty well immediately after the injection but I was told that it was very temporary and had nothing to do with the action of the botox. At any rate I was still excited.

I was told that over the coming days my voice would be “breathy” and I may have problems swallowing and to be mindful of that when drinking. I was given a form to take home with me that listed various possible complications and was instructed to call the doctor in 2 weeks so she could listen to my voice over the phone. It was also suggested that I keep a record of the quality of my voice so that they could adjust the dosage if necessary at the next injection.

I kept records of my outcome over the following weeks and quite frankly I wasn’t that impressed with the results. As a matter of fact I was pretty much deadset against ever going back. I had what I considered to be only 2 weeks of good quality voice over a 4 month period.  Why the hell lay on a table and have lidocaine squirted the wrong way up my throat?

So didn’t go back for a almost a year and a half.

I figured that I could just “deal” with the voice problem. I had up until that point anyway. The problem was my condition seemed to be getting worse over time. Not to the point where I couldn’t talk at all but just very frustrating. SD is perplexing in that the harder you try to talk the worse you sound. After almost a year and a half I was so angry and depressed at times that I finally decided to go back to the doctor. Anything was better than what I was going through at that moment.

I made an appointment and went for another injection. I discussed with my doctor at length what I thought about the last effort and she decided to up my dosage.

Increasing the dosage does a couple of negative things. It causes the period of breathiness to be much longer and it magnifies any swallowing problems you may have. Did I mention it magnifies the swallowing problems?

Guess what… you will only forget once that you need to take small sips of liquids during this difficult swallowing phase.

I was told the breathiness would last about 2 weeks. It lasted a month.

But….

Even though your voice is “quiet” during this period, it is not broken and people can and do understand you when you speak assuming you are not in an overly loud environment. It is strenuous to talk for extended periods of time though during this breathy phase and I don’t seem to breath as efficiently either.

Then comes the best part. My voice gets louder, aka stronger. In a few weeks my voice is pretty much normal and this lasted for 3 months straight with a gradual decline back to the baseline.

After I noticed the breaking of my voice again, I went back for another injection. I’m currently in my awesome speaking voice phase and there are times when I completely forget that I have SD.

A little over 2 years ago while I was still working for Fannie Mae I started to notice that my voice was a bit odd in the mornings. I used to have meetings from time to time around 10am with staff or consultants and my voice would break in the same way that it might if you had a cold and had to clear the phlegm from the back of your throat.

I’ve always had post-nasal drip and really didn’t think too much of it. I’d just clear my throat and things would seem to get better for most of the rest of the day. During this time I was also preparing to leave Fannie Mae as I had decided to take the advice of the then acting CEO/President who most eloquently stated in a Town Hall meeting “…If you don’t like where this bus is headed you should get off at the next stop…” I wish I had known where the bus had been before I arrived or I probably would have never got on in the first place

At any rate I left the company, took a new job and proceeded apace with my life. Funny thing is, the clearing the throat bit didn’t seem to be working anymore, and worse yet, other people were noticing as well that something wasn’t “right”.

I would generally get comments along the lines of, “Oh you must have a cold.” or you should “have that looked at.” So true… but I didn’t have it looked at. I went on about my business.

In January of 2006 I went to a local New Year’s Eve party and by god, I was struggling to talk to people at the party. The environment was loud and the harder I tried to be heard the worse my voice was. It was breaking at the most inopportune moments and I could tell that people were struggling to understand me. “What the hell” I thought. This isn’t right. I feel fine, but when I try to speak it’s like pushing loose rocks around a field with a spade. The sounds are just not behaving.

So I decided to do the right thing. Search for voice problems on the Internet. Yeah, the Internet as Doctor. I think that in terms of stupid things a person could do, trying to diagnose one’s condition by doing Google Searches is well…. pretty stupid. The chances of you, a lay person determining the correct diagnosis amidst the 8000 other possible reasons why your condition is manifesting itself is next to zero. (It’s really great for hypochondriacs though). I didn’t even know what to search for really. After a time I concluded that nothing I had read had anything to do with what was happening to me and I certainly didn’t have upper Mongolian bat fever so I gave up and made an appointment with the Family practitioner.

Well that was a good start. Really.

I mean really.

I should have done that in the first place. My doctor had several suggestions about what was going on with my vocalization and it’s pretty standard stuff. Mostly, he was concerned about GERD. He asked me if I had been having heart burn. “Why yes, yes I have actually.” I have been having more of it than usual if the truth be told.

This seemed like the perfect foil as acid reflux can and sometimes does cause irritation of the throat to the point where it can affect your voice. Sounded just fine to me! Simple. Easy to fix if it comes to that. So he scheduled a barium upper GI for me and he also wanted me to make an appointment with a specialist, an Otolaryngologist. Say that 3 times fast, I dare you.

Oh, it’s an Ear Nose and Throat doctor… So why call it an Otolaryngologist? I think it’s because intellectuals have a secret desire to make their profession seem more exciting than it is. “Oh? you’re a Gasteroentrologist?” Ahh.. you mean an intestinal engineer or perhaps a colon plumber? As you can see Gastroenterologist sounds so much better I mean no offense… really. I love everyone.

Anyway, off to the Upper GI exam to drink the barium beverage which is sort of what I imagine drinking liquid chalk with the consistency of melted marshmallows would be like. And I’m right, it’s pretty much just like that except it doesn’t taste as good. So after the exam I’m anointed with accolades from the radiologist as being one of the few people she’s seen recently that refluxes standing up.

Yay. Fantastic, I’m special. I always knew it and now it’s documented in the radiologist’s findings.

So GERD must be my problem.

Not so fast…spake the radiologist. While the reflux is pretty bad and you need follow up care with a Gastroenterologist the reflux never gets anywhere near your throat even when you were lying down, she says.

“Crap”, I think to my self. Not only do I apparently have GERD from hell, it isn’t why my voice is going south on me. Off to the Otolaryngologist… Ok try again to say it three times fast. Too hard? Say it one time fast, or just give up like me and pretend that you can say it and avoid actually saying it as much as possible.

Now, I sit with the throat doctor and she looks over the lab results from the upper GI and has this rather concerned look on her face. “This is pretty bad, you are seeing someone about this right?” “Yes” I nod my head.

“Ok, good, so lets just talk for a bit.” The doctor, talked to me for a while asking me various questions that seemed reasonable and others that didn’t at the time. She asked me to say certain vowels, certain words etc. She was very attentive and seemed to hang on every word.

She also (and I didn’t really notice at the time) was paying close attention to how I was trying to vocalize, how the sounds seemed to be strangled coming from my throat and how I would scrunch up my face sometimes when it seemed as though I was attempting to push the words out by sheer force. (I didn’t notice I had been doing this until she mentioned it)

She sat back and said, “I think we’ll need to take a look at your vocal cords now.” Uhm… I thought… how pray tell will we be doing that?

The doctor produces a magical flexible tube with a light and camera on the end of it and proceeds to tell me that this tube will be going down my throat to spy on my vocal cords and she will ask me to say certain letters, etc and she”ll watch and take pictures/video. “Oh, and this may me a bit uncomfortable”

Great…Ok, so lets take a break and make sure that you understand some simple facts. When a doctor says something will be a little uncomfortable they mean:

1. This isn’t going to bother THEM at all but it will bug the hell out of you.
2. This is fun and interesting for THEM, but you are not going to enjoy this one tiny bit.

In truth the procedure isn’t that Horrible but it is pretty disconcerting and I wouldn’t want anyone to forgo a diagnostic procedure because I’m making it seem worse than it is. They do numb your throat so it’s more the shock of knowing you have a tube down your maw and that you are being asked to talk while it’s there that is bothersome.

After the procedure is complete she left the room to view the pictures and came back and she told me she was making a diagnosis of Spasmodic Dysphonia, and that it required a differential diagnosis and I would need to see a neurologist, and a speech pathologist.

My reaction in the next post.

Nope, I’m not talking about over priced food. I’m talking about restaurants that willfully charge more than what the individual listed items on the menu cost. This seems to happen to me most frequently in small Chinese take out places. I’m not sure if there is some sort of Chinese Cabal going on but there seems to be an almost collusive quality about it.

Now before you go wading into the deep end of the pool outing me as some sort of closet Chinese hater (believe me if you really knew me you would know how silly that accusation is…) I merely note that over-billing occurs vastly more frequently at the small mom and pop Chinese Take Out places. My real beef is with business owners who intentionally cheat their customers. So insert any type of restaurant you like to frequent that over charges you. For me it’s the Chinese places.

Instead of lemming-like swiping your credit card or forking over your cash for your edibles, actually add up the prices plus applicable tax (if any) and compare that to what the innocent looking person standing behind the register is telling you is the Total Price. If it’s correct, congratulations. If not then state that the price is not correct.

This is where the fun begins… In my experience the over-pricing is usually anywhere from a penny to 15 cents. I’ve seen it as high as 45 cents but that’s pushing the limits of even the most mathematically inept person to accept. I have this theory that price gouging is more easily enabled by the entirely inadequate education today’s kids are getting… Anyway that’s another subject.

If the price difference is just a penny it can be countered by the restaurant as a rounding issue. I’ll leave it up to you whether it really is in your specific case. If the price is more than a penny then you should call them on it. You don’t have to of course, if you approve of people stealing your money, because that’s exactly what is happening.

You can rationalize by saying it’s only 5 cents, why bother? Yeah… that’s exactly what they, who are stealing from you are counting on. Of course this assumes you know the actual price you should be paying

I would be willing to bet a penny that most of you reading this have never or almost never or at least very infrequently added up your bill before paying.

You really should.

Every time.

In every restaurant. You may very well be surprised.

Something that always occurs in a restaurant that over-bills is you will never get an itemized receipt. Trust me, they won’t give you one even if you ask. They’ll pretend they don’t know what you are talking about.

Some of the general excuses I have heard when dealing with unscrupulous vendors are:

• “This is the correct price.”
• “See, look at the computer screen, the price is right there” (As if the computer can’t be programmed to add a bit more than it should)
• “The sales tax changed”
• “It’s only 2 cents”
• “Your calculation is wrong” (my suggestion here is to demonstrate with your calculator that they are wrong… this works sometimes and not others)
• “This is the price”

My advice is if you can’t get them to accept the real price, refuse to pay… walk out and never go back. If you do get them to agree that your price is the correct price then something rather interesting happens.

The next time you return and every time thereafter (assuming you are recognized) you will always get the accurate price. I’m convinced but have no proof that there is a key that the cashier presses called “Smart guy” which spits out the accurate price while the default mode of the register is “dumb-ass will pay whatever I say.”

Yep, that’s what I think is happening. You don’t have to agree with me. You don’t have to like what I say or how I say it. But you should always itemize your purchases before you pay for them and do what you will with that information as your conscience directs.

I care about my money no matter how trivial the price difference and you should too.

This is a pretty nifty little device. If You haven’t seen it before you can checkout the specs here: www.drobo.com

Basically I was looking for a way to implement a backup solution for some of the systems in the house and this seems to working out nicely.

There are some caveats though. It’s much slower than a dedicated purpose built RAID system. You are not going to be getting much over 24MB per second transfer speed with this puppy and it doesn’t have an Ethernet port. It’s not a NAS, it’s not especially fast but it’s useful in certain situations where you don’t absolutely require either of two previously mentioned items.

You can hook this USB only device to a computer and share it over the network, thereby solving the Ethernet port issue which is what I’m doing now. This works fine and if you have a GigE lan then you will have no problems maxing out the transfer rate of the Drobo.

So why did I buy it?

Well the older I get the less interested I am in spending time “building stuff” or “optimizing stuff” or “fixing stuff”. My threshold for those sorts of activities is very low these days and in order to make life easier I decided to forgo the trials and tribulations of setting up the “whoop-ass” RAID server and simply bought the Drobo which requires little to no effort on my part to setup or support. What’s especially nice is that my BF who’s the primary user of the device doesn’t need to fiddle with it or me, because it just works.

You buy it.

Turn it on.

Insert drives… you don’t need to put the drives in a separate caddy, just slide them into the Drobo and the device does everything for you. That’s what I like… Me doing less. Technology doing more. Plus it looks nice.

If you want more details about the device then start with a Google search

To all you people named Mark, or who have friends named Mark or siblings, parents, or companies named Mark who are covetous of my domain name and want to purchase it, let me answer that query right now.

It’s not for sale.

For all you people that seem to think that the domain is unused simply because I don’t have a web site up… Well, now I do. So I’m using it. Nanny nanny boo boo.

If you still insist on writing me, asking me to sell it to you, then setup a domain transfer escrow account, fill it to the brim with your gold or whatever and then send me an email. Otherwise save yourself the trouble.