Meh

The protocol to start my new drug Gilenya is to go to a medical facility (in my case, an urgent care center in the Valley), pop the pill, and sit around for 6 hours while your heart rate and pulse are monitored to make sure you don’t keel over or die or anything.

Simple, no? First off my appointment is at 10 a.m. Being a prompt sort, my good friend Bella gets me there at 9:45. I fill out paperwork, we chat for a 1/2 hour, then she leaves me there. Then it’s 10:45, then it’s 11:00. Um, hello? My appointment is at 10, what’s up? The monitoring doctor isn’t here yet. Ok….

Now, even though I’m unemployed and honestly have nothing but time on my hands, I still feel that my time is as important as anyone else’s. So I’m starting to get a little grumbly under my breath. “I guess this doctor thinks his time is more valuable than mine….sure! just make me wait!….goddam doctors thing they’re so important…” Somehow I’m drifting into a self righteous ‘get off my lawn’ space and feeling more and more like I’m being singled out and wronged by ‘The Man’ and every other human on the planet. Very pretty and helpful in this situation.

Not surprisingly, I take this attitude right with me when I’m finally called into an exam room. A nice nurse takes my vitals, then says another nurse will be right in to give me an EKG. Just put this ridiculous piece of hard stiff fabric that covers nothing of your body on and sit here in the freezing air conditioner for a minute, he says.  10 more minutes go by and I start frothing at the mouth. I am getting pissed! I’ve thrown off the stupid paper shorty gown top, I’m half naked in a sweater and getting madder than a wet hen by the minute.

In comes the doctor and the first words out of my mouth are, “My appointment was at 10. I’m usually a very chill person (obviously) and I’m sorry to be such a bitch but I’m tired of sitting around waiting on you people..blah, blah, blah”. The doctor is unfazed. I’m assuming since this is an urgent care facility she’s used to dealing with people who are a) hungry and b) scared ~ which I finally realize are both true regarding me.

I calm down, get dressed, and pop the pill at 11:20. I’m escorted into a quasi storage room with a big chair in it and then monitored every 1/2 hour for blood pressure and pulse. I finish watching Behind the Candelabra; the movie Birdman (did it really win an Academy Award?); and 8 or so episodes of Seinfeld.

The plan is for Anna to pick me up on her way home from a relaxing weekend in Monterey. The timing was perfect! She got there right at 4:30, but since I’d started late, we had an hour to kill which we did visiting and eating potato chips. At 5:30 I get another EKG and the news from the doctor that she wants to ‘hold me over’ because all my pressures are low.

Drat. I’m kind to the doctor now and being all cooperative and trite because I’ve been such a bitch at the beginning and feeling guilty. She seems to be just going along with her day and harboring no resentment towards me and the time passes and finally at 7:30 I’m released.

On the way out, we stop at the desk to ask her some questions about this super heavy duty, heart beat lowering, ‘we’re not sure how it works’ medication. It goes like this:

Me: “Since I took my first dose today at 11:30, can I take it tomorrow at 10?” Dr. C: “Meh” with a shrug.

Me: “Should I stay home tomorrow and rest, or should I go into the store so Anna can keep an eye on me?” Dr C: “Yes”. Me: “Yes, I should stay home? Or yes I should go to the store?” Dr. C: “Yes”.

Anna: “If she starts to feel dizzy or strange, is that normal? Or should she go to urgent care?” Dr C: “Meh”, again with the shrug. Then she says, “You might feel faint, have chest pains or be dizzy.” Anna and me: “and…?” Dr C : “Meh”.

It was just bizarre. At this point, we can’t wait to leave so we just high tail it out of there and figure we’ll sort everything out as it comes along. Poor Anna, this is how she ends a holiday weekend? I take her out for some dinner, since all we’ve had since 4:30 is a small bag of potato chips, which we split. We go to one of our usual places and when I ask her how her dinner is? She just shrugs and said, “Meh.”

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Seriously. 2 Cookies?

Like the majority of people, middle age has definitely settled a few lbs around the old middle section. In addition to the age thing, I just can’t exercise like I used to (what I wouldn’t give now to be able to participate in my least favorite activity: jogging). A few stark selfies in the mirror was more than enough motivation to decide it was time to drop a few pieces of stored wine and chocolate, and since diet is also huge in managing MS, I put together a plan.

It’s no secret I have the most amazing two daughters and I am endlessly proud of them. Sometimes mistaken for twins, they could not have chosen more divergent careers.

While Elizabeth, as a licensed paramedic, runs around with lights and sirens leading her way (literally and figuratively), Anna chooses to make jewelry and run a business. They are both incredible, and very inspiring to me.

Because on any given day Elizabeth can be found helping skate boarders with broken collar bones, monitoring old ladies with irregular heartbeats, DELIVERING A BABY, or in some cases, just calling it (once it was a guy who met his maker while wearing a cock ring and ‘looking over’ a Farrah Fawcett Playboy spread); she is our go to person when we stub a toe, get a bug bite or give birth to an eye hematoma with a name (Ito). I don’t use the word awesome unless something is truly awe inspiring ~ Liza is awesome.

Anna is equally dazzling. Though she squirms at the sight of the tiniest spider (while her sister can pick up a severed limb), she is no wimp. This girl has gone through a harsh and unexpected divorce and during that time still managed to create, maintain and grow 5 businesses. She creates two of her own lines of jewelry, has a small floral design boutique, owns and runs a gift shop Boulevard 34 (shameless plug here, it’s my blog after all ~ please like it on Facebook! www.facebook.com/blvd34), and has now started coaching a fitness group.

In the spirit of support, wanting to thin down a bit, and the fact that Anna and I are together all the time (and love to eat), I chose to adopt her coaching meal plan. It couldn’t be simpler. It’s all about portion control. Lean protein 3 time per day, veges 4 times per day, fruit, fats, carbs a limited number per day. You get it. And here’s the kicker: since experiencing vertigo starting in early July, I haven’t been drinking wine.

Now those of you who know me (my Tubac friends are no doubt getting up off the floor after being knocked down by this revelation), I love my wine. Over the years I’ve drifted away from beer, martinis, margaritas, and so on, but man I love a glass of wine to wind down at the end of the day.

One would think that by giving up wine alone I’d be shedding weight like a Malamute in summer sheds fur. I’ve (mostly) given up chocolate, wine, popcorn and all crackers and cheese. It’s just all heathy and organic protein and fruits and veges. So I was pretty happy to find out I’d lost 2 pounds in 17 days. Yay! Ok, in actuality I was expecting to “lose up to 10 lbs in 3 weeks!”, but hey, 2 is safe and certain and better than nothing.

But alas. Next door to the store is the most amazing bakery called Berolina’s. It’s run by my friends Youna and Anders (a Belgian and a Swede), and I found that they make peanut butter smash cookies just like my mom used to make from Aunt Iris’ recipe.They are delicious.

In celebration of losing 2 pounds I decided to have 2 cookies (yes, I re-read that sentence and realized how totally ass backwards that is). What’s the big deal? 2 pounds, that’s the big deal. They’re both back. I’m hoping another gallon of water and some lettuce will kick them back out; that it’s just fake weight caused by bloating, heat, an alien force field…something.

I plan on staying with the eating plan. I feel energized, my skin is good, I rarely miss sugar. But I gotta tell ya, once this vertigo thing is behind me, I’m having a glass of wine. To hell with the cookies!

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It Does What, Now..?

Just over a year ago I posted about how excited I was to be trying a new dry cleaning fluid based pill, hoping it’d be a panacea, etc., etc. Well now, 13 months later I can report ~ yeah, not so much.

An $18,995 MRI came back all clean and rosy ~ no new lesions and others even reduced in size ~ this is all good. What’s not good however, is my new inability to do things, like, oh….. WALK. That particular skill has gone directly and solidly downhill.

Consequently, I scheduled a pow-wow with my doctor….wait, I haven’t told you about my new doctor yet, have I? Oh my goodness! Dr B. She is amazing! Very, very, very smart. She looks like Emma Peel as a Russian spy. She’s very stylish and gorgeous and super well dressed. Under her white doctor coat she wears super chic black A-line dresses or slacks and pointy shoes. She has teased hair, black eyeliner, gold jewelry and a PhD. In a nut shell, she is bad ass.

Dr B. and I discussed my options and together (with patient advocate daughter Liza by my side (it was her turn, Anna went last time)), we opted for another newish drug called Gilenya.

This will be drug therapy #3. Two main things seem to be consistent with MS drugs. 1) they are massively expensive and, 2) scientists seem to have now idea how they work. Witness the fancy brochure I had sent overnight to me from Novartis, (the makers of Gilenya). Tucked in amongst the glossy pictures of people laughing and splashing paint all over the place (why? I have no idea), and warnings of side effects you don’t want to know about, is this gem of a phrase on page 10: “While it’s not exactly clear how Gilenya works….”

Whoa, wait a second. WTF? I’m going to take some pill that is unknown as to how it works? The short answer is hell yeah. If it can slow this thing down, then you betcha. Honestly I don’t care how it works, only that it does.

So I get an EKG to see if my heart is ok. I get blood drawn to see if my liver is ok. I see a nuero ophthalmologist (this guy is also gorgeous ~ if you get MS, go to USC Keck Medical Center) to assess if my eyes are ok (I told you you didn’t want to know about the side effects…).  I contact my insurance. I contact my co-pay assistance fund. I get green lighted all the way around and now I am good to go.

The next step is to go to an out patient center someplace in the Valley so that I can take my first pill and then be monitored for six hours to make sure my heart doesn’t stop beating or some damn thing. Chances are one in a zillion, but I guess they want to be sure.

I trust my new Avenger doctor and her recommendations. But let us please, collectively keep our fingers crossed that this works.The next options are even crazier ~ but you can bet I’ll try them if this one doesn’t pan out!emmapeel

 

It’s All Right: Quasimodo, Crowns, Ito and Whirlygigs

I’m not gonna lie. This has been one hell of a year. My switch to a new MS med last year has not really panned out as I’d hoped, and the right side of my head has taken a beating like you can’t believe.

It started when I woke up one morning knowing something was just off with my face. I managed to get in to see my doc and he assured me everything was ok despite the weird feeling I was having. Maybe, though, I should get a shingles shot. We decided that was a good plan.

Fast forward 12 hours and I’m in the ER with the right side of my face on fire, my eye swelling shut, looking like Quasimodo, and having a bad case of…shingles.

Son of a gun does it hurt! I look like a leper. I am really an eye sore to behold, an eye sore in reality, and just flat out miserable.

Once I can go out in public again, I head to my dentist. A mouthful of ancient fillings, in my late 50’s, they gotta go. ‘We’ll just pop in a few overlays’, he speculates on that right side, top and bottom. Nope. Four crowns, 1 root canal, the cost of an overnight suite at Grand Peninsula Hotel in Hong Kong and MY MOUTH IS KILLING ME.

So I spend some time laying low, snacking on Ibuprofen and binge watching Game of Thrones with Anna. On this one night in April, I discovered I have this neat trick I do when I stand up ~ I sort of pivot and twirl. You know by now I have MS, right? So of course I lose my balance and crack the right side of my head on the hearth.

This gives me a shiner that was so big I named it: Ito. For weeks I color coordinated my wardrobe to match the bruise and wore eyeshadow on the left eye to tone the look down.

By June, thankfully everything has calmed down except for my jaw from the crowns. Then last week as I was laying on the floor doing some stretching, I turned over (on to my…wait for it…right side) and BAM suddenly I am hurtling through space as a human whirlygig ~ aaaggghhhh Mr.Wizard! Make it STOP!

Son of a bitch, now I have vertigo. A wise friend suggested the chiropractor who was ever so helpful. And while he was doing his thing, he says “wow! is your jaw ever out of alignment on the right side!”

As of today, I am able to turn over, bite down, and see out of my eyes all with minimal scarring. Two things though: 1) listen to my mother who warned me time and again and go get a shingles shot and 2) if next time you see me I’m wearing a safety mask, you’ll know why. My left side is nervous.

 

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