Saturday, May 22, 2010

"Puffy Tacos"

I realized today that having a blog is not just fun and games. For me, it's apparently essential, if I want to remember what I did yesterday. The day before yesterday? Forget about it.

The weather is getting really nice here. Summer seems to have arrived, ready to blast me with some vitamin D.

Chloe just ate a lot of tape off of a packing box. Thankfully it took a whole 30 seconds for her body to reject it, and she hurled it back out in a lovely puddle of white foam.

The consulate called a few days ago to see if I could sing at a Swedish National Day event in SF on June 6th. I had a heck of a time deciding what to do for several reasons: 1) I can't sing at the moment, 2) I already had a trip booked for the following weekend, and 3) my students' recital is that very same day. But alas...it has all been worked out. Except for telling the boss lady that I won't be at the recital...I don't feel too bad about that since...neither can 75% of my students. And since she's only given me 4 students during the course of this whole year, I can't shake this feeling of entitlement!

In summarium... (is that word? It should be.) I will be singing at the Consulate event, provided my voice kicks back into gear. I was mainly worried about it being nodules on my vocal chords, or a hemmorage, but the kind doctor who shoved a camera down my throat by way of my nose showed me, in a personal little documentary on a screen, that my cords were indeed fine. At first I was relieved, that it wasn't nodes. But then I became UNrelieved, when he said it could be MS related. I had never heard of MS affecting the voice itself. I know it can screw up speaking, but I always assumed that would be a muscle disconnect in the face, keeping you from forming the words. He said that possibly a nerve could have been severed in the brain, that controls some part of the vocal registry. As I sang some notes for him, with the camera down the throat, it looked like I was clenching up at around a C. The space got visibly smaller, which is the exact opposite of what it is supposed to do for higher notes. He referred me to a voice therapist, and I'm going to go see her first thing Monday morning. I am really hoping she can impart some magic, so that this performance on the 6th of June won't be lame...I would be very very sad.

So healthwise, things are a little rocky at the moment. I noticed at the doctors that my blood pressure was back up again. I've been taking the medication religiously, but I have also noticed that the headaches are back. It's so frustrating. Nobody knows the cause of the hypertension. I think I am definitely more scared of that issue, than I am of the MS. That said, it is undeniably frustrating also, feeling like my legs are doing strange things. For the past 3 days my left leg has made its way into total numbness, following a period of pins and needles. I can't explain it well at all, it's like the surface of my leg, from my toes, all the way up my back, is numb to the touch. But INSIDE my leg, I feel weakness, and pain. How weird is that!!? Today I have for the first time in my life felt like my balance is worse than normal. Again, I know I shouldn't freak out. It's hard not to when I think about how I've been off MS therapy for over two years...and we're about to start some dance lessons for our first dance... I try to tell myself that dancing or not dancing at ones wedding, ultimately isn't what is important. But somehow it would feel like a definite loss if I made it this far with full mobility, and I were to lose it right before my wedding. Call me superficial...Oh well. I have a "numb bum"!!

Along those lines, I ordered and paid for my Copaxone. Enough bullshit. Enough phone tag. I was on the phone for over 4 hours with Shared Solutions (the support company that sends out injection training nurses etc.) and Caremark (the Specialty Pharmacy that seems to man their phones with redneck imbiciles.) For over 6 months I've been trying to work out how to get financial aid from...well, anywhere. The obstacles are too many to count. I wanted to scream (and I kinda did...) when "Joe" told me "your co-pay is really high" (I know this.) and "we should look into getting you some financial aid" (We've tried that.) Literally every time I've tried to pay for the drugs, and get them shipped, I've been passed off to their Insurance Aid Department, where they have promised me a call back "in a few days". And each time, that call has informed me that for one reason or another, I am "ineligible in my state", or they need "more info" (usually info I've given at least 3 or 4 times...) ...then when I've called back the original number to pay, they've "closed my account" because it "took too long" for me to get back to them. And whose fault is that?!

Back to square one. There is an actual SINKHOLE developing in square one, that's how much time I've spent there now. Yesterday I told "Joe" that I could care less about being connected to the financial aid department that will just send me on a wild goose chase, then make me call back after I've been rejected, to find that my account has been deleted. No thanks. Take my credit card number and let us get this shit-show on the road. That'll be $972. Thanks, and goodbye. Now the "home injection shipping department" is supposed to call me on Monday to set up the first delivery. Then once I have the 30 shots, I have to call Shared Solutions back, and tell them to send out a nurse to tell me what the heck I'm supposed to do next, even though I think by now I can figure that out. And so we will begin the daily injections. Fighting MS - take II. I keep telling myself that it can not possibly be more difficult than taking that bloody Avonex intramuscular shot every week, and the 5 years of depression, pain, and trauma that followed.

I ordered a new phone last night. I was all excited about all the different options. I was let down when I realized it would be stupid to get anything other than another Blackberry, considering the sheer number of chargers we own for this particular phone. I got a black one to replace my red one, and I'm hoping I will note a considerable improvement in performance. Not based on the color, of course. But maybe, just maybe, it won't drop every single call I make, after two minutes. It has taken great self-control to not hurl that piece of crap into the windshield of my car. Last time I did that, it just bounced back and hit me in the face. Thank you, universe.

I'm hungry. Bobby Flay and this other chick, are making "puffy tacos". I really, really would like a puffy taco. I don't particularly care for the term "puffy", but I'll let it slide, in favor of deliciousness.

Terence is at a working interview down in some remote little MA town. Swampee? Swinsay? Swansee? Swimpee. Something like that. I am sure they will love him. Another clinic that first told him no, has now called back and may have an opening after all. That one is much closer to where we live, and it sounds like he would be happy there. I am sure one of the three that are currently on the table will work out, but I think we'd both be extra happy if it were the one nearby! Moving is a pain in the ass, and expensive as hell. But it would definitely be worth every cent and effort, if Terence can find a good work environment.

How do these blogs get so long? I'm not going to have any readers, if I don't start either being funnier...or at least quicker to the point.

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