Jinx!

I’m back! I had my treatment in late July and have been hesitant to post anything for fear of jinxing the (so far) amazing results. I did post something on Facebook a few weeks back and sure enough, later that night I couldn’t walk. But let’s start at the beginning.

In June, I went with my siblings and sister-in-law up to Mt Shasta to scatter Mom and Dads ashes. It was poignant, and heart breaking and liberating all at the same time. As I’ve written here before, my expectation of the whole “circle of life” thing was completely shattered when I fell to my knees and wailed from a very deep place I didn’t even know existed within that I missed my Mom! Fortunately, my brother and sister were there and my sister kept me from completely melting apart.

While out of town I got a call from my neurologist informing me that my treatment was being moved out two weeks. Damn! I had myself totally psyched up for it, but as it turned out it was for the best. When I came home from my trip, my beloved, pain in the ass, long time companion Clark wasn’t feeling so great. Fast forward a week and I was saying goodbye to my old pal. I miss him tremendously, but he did me a solid by checking out when he did. That cat was in. And out. And in. And out. And in…you get the idea. During my infusion week it would have been a bit much I think.

So I’d lost my mother. I’d lost my cat. It was time to lose my immune system. I’m sure I’ve made it quite clear that my family ROCKS. No surprise then, that my sister came straight down to go through the procedure with me (and my nephew popped in from NY for a night to offer some support). She and I secured candy (to counteract the steroid taste), cell phone chargers, snacks (duh, it’s my family), blankets, and water bottles and headed downtown to the hospital.

Everything I’d read said to plan 6-8 hours per day for the five days of the infusion. Yikes ~ that’s a long day. Ha! The protocol at the hospital infusion center required 10 hours ~ each day. The nurses were fantastic and had been infusing Lemtrada for over a year, so they had it down. I partly attribute my comfortable response to this drug to their expertise in administering it and the tweaks they’ve figured out to make it as uneventful and successful as possible.

My sister stayed for a week, followed by my brother for a week, followed by my daughter for a week (not to mention cards, visits, shopping, food, flowers, phone calls and texts from many incredible friends).  My gang did laundry, chores, cleaned house, shopped, cooked…I basically had staff. It was fantastic.  I am so fortunate that I felt great, almost right out of the gate. My head felt clear for the first time in years (possibly due to not drinking wine for a change as one friend pointed out, but anyway…).

So on the Facebook posting night, my daughter Liza was here from Colorado, and her boyfriend was here too. We went over to Anna & Chris’s house for dinner and holy shit….my legs just stopped working.Completely. I wasn’t unduly alarmed; one is warned of all kinds of crazy stuff that can happen post infusion, but it wasn’t fun. Fortunately, with two paramedics on hand, I knew I was going to be safe. Liza had the wherewithal to put in a call to the on-call doctor who told her I needed electrolytes (it’s critical to stay hydrated, but all that water had had flushed everything out of my system apparently). I had a Gatorade, and within 20 minutes was back on my feet. Yay!

Since then, I’ve been feeling marvelous, albeit pretty low energy. The goal with Lemtrada is to stop progression, and any improvement beyond that is gravy. I visited my doctor last week and was told I’m right on track, which is super encouraging. I now continue to get labs done monthly for the next four years (monitoring against all kinds of dire and weird stuff) and then I’ll get an MRI in one year to see if progression as been halted, then do this all over again for a for three day second course of treatment.

I’m not allowed to expect anything beyond containment of this disease, although many people have regained various degrees of ability. Obviously I’m tempting fate by writing this blog post and possibly jinxing myself again, so I’m going to say this very quietly: last week I walked across a room, unaided, carrying a glass of water! ;-).

Ssshhhh…..

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Is It A Little Warm In Here?

When I was in the audio business I went to a LOT of trade shows. At one company I worked at we had a slew of rep firms that sold our products across the nation into music and pro audio stores. These warriors obviously attended all the same trade shows as me, which were scattered throughout the year all over the country.

Although it might be hard to fathom, I was a pretty irreverent little punk back then (as were all my co-workers ~ but damn we certainly were witty and clever). We had this one guy who had a firm based in Minnesota. No matter where we were, or what time of year, or what time of day, he would always come running into our booth sweating profusely and saying, “Is it a little warm in here?”. Mercy, we made a lot of fun at the expense of that poor guy. Apparently I took the communal comeuppance and was chosen to pay the group sins by getting MS, whose worst enemy is heat.

Back in the day (so I’ve heard), if you you were suspected of having MS, you’d be thrown into a tub of hot water. If all symptoms got worse, then there you’d go. MS. I’m not sure if that’s true or not, but suffice it to say I haven’t had a hot bath in years.

Now add an equation of MS, medications, menopause and living in Southern California and you’ve got one noodly challenge to standing or walking. On top of this, I can’t stand air conditioning. All that fake cold air blowing over my neck, head and body – yuck. Consequently, I tend to be one big Gumbyesque mess come summer. And of course this being Southern California, it always feels like summer.

This new treatment that I’m about to embark on (the goal of which is to stop progression), has offered some other Lemmies (evidently the Lemtrada “in crowd” gang moniker) relief from the heat as time has gone on. This would be a big bonus for me! Geez, I’ve become a gray haired, over weight, over heated grumpy old lady with a walker now. I’m so totally ready to be cool again! : -)

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Hakuna Lemtrada!

Multiple Sclerosis is for the birds. No big news, that. What is big news are the many treatments that good ol’ Western medicine has been cooking up in the past decades since I was first diagnosed.

I’ve tried several of them ~ Copaxone, Tecfidera, Gilenya ~ and with the exception of Copaxone, I haven’t been too impressed. So it is with skeptical delight that I’ve decided to give another one a try. It’s called Lemtrada. This one basically annihilates the immune system then let’s your body regenerate it without the “memory” of MS. Sweet!

Downsides? Minor. Risk of cancer, thyroid problems, thrush, vomiting, rashes, death. You know, just about anything awful. But what the hell, death is the outcome regardless for us all, and despite that it seems extreme and in another decade it will probably seem as obsolete as using leeches to clean wounds, I’m giving it a go.

I know, I’m being glib (also no big news). Quite honestly I’m terrified. How can I not be? I’ve always thought going under the knife for any kind of elective procedure was risky, vain, unnecessary and actually stupid. Instead, I’m opting to voluntarily obliterate my immune system. Genious!

As expected, my incredibly wonderful and supportive family are lining up to take turns caring for me. My sister is coming from Seattle for the week of infusions (6-8 hours per day for 5 days), my brother is coming down from Northern California to take his stint and cook for me and keep me amused, then Liza comes from Colorado for a week to keep me company and shore me up. And of course, Anna is here the whole time being my rock.

As fucking freaked out as I truly am, when Liza was leaving from her visit last week I told her next time I see her, I won’t have MS! I don’t think that’s exactly true, but it certainly is a fantastic motivator!

I’m nervous and excited and expecting quite the journey. If this can stop MS in it’s tracks (and quite possibly allow my body to regain some ability back), I’m a thrilled and happy camper. Count on my brother to coin the phrase “Hakuna Lemtrada” which I”m hoping proves true…”it means no worries for the rest of your days…”!

 

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And Floss, Too!

I’m not proud of what I’m about to share, but here goes. I like to relax before dinner with a glass of wine and a puzzle of some sort (jigsaw, crossword, scrabble) as a segue from the day into the evening. Oddly (and thankfully) enough, a glass of wine tends to make me more steady on my feet ~ maybe it’s the sugar, or maybe it just relaxes me? I don’t really know or care ~ I just like being able to drink one with a clear conscious.

On this particular evening, for whatever reason, I was honestly just a tad tipsy (at least I hope I was based on what happened). I glanced up and saw out the window two people walking up to my front door. I recognized three things: 1) they were strangers, 2) they were teenagers, and 3) they were black.

I don’t like answering my door period, and I was startled for all three reasons stated above. Everything in the media says don’t open your door to people you don’t know, ever. The town I live in is very ethnically diverse with Armenians and Koreans, but not too many African Americans. Teenagers are, well, teenagers. Once I realized my 3 prejudices I was embarrassed at best, horrified at worst. Everyone is a stranger until you say hello, teenagers are inherently just frightened children, and what do I care what color they were?

Consequently, I opened the door laden with guilt and a loopy smile and asked what I could do for them. They were selling some sort of coupons for their football program. I asked them what high school, and it was not an area school, nor one I recognized. I then asked, “What are you doing all the way up here, then?”.  “Our coach brought us up here,” said the girl. I reply with, “Oh, that’s because he knows there’s money up here.” I did. I said that. Outloud.

Now that my foot was buried up to my shin in my mouth, I started to get even more frazzled. The kids asked me if I wanted to buy a coupon book (fair enough I guess since we’re all so stinking rich up in here) . It’s for things like Long John Silvers and Caesars Pizza and other places I never go to so I said no thanks, plus I told them I have no cash. “That’s ok,” says the young man, “we can take a check”. Who has checks? I don’t anymore. Why can’t they give these kids card readers?

I’m dripping in even more guilt, because I’m sure these teens think I’m lying about not having checks.Then,  I remember that I actually DID have some emergency cash on hand (yes, I dipped into emergency reserves. I was beginning to feel that this was an emergency. What if they think I’m a stranger/black/teen hater?). So  I ask them to hang on a second and go into my cash reserves ~ all I have is a $50 bill.

I give them the $50 bill. Their eyes get really wide and they are gushing with thanks.  I did not take a coupon book, but I told them to study hard and stay in school. Then as if I wasn’t already acting enough like a crazy old bat, I told them to brush their teeth. I did. I said that too. Outloud.

Their eyes got even bigger and I mumbled that I had braces like them once upon a time and they needed to keep them brushed. Needless to say, they couldn’t get off my front stoop fast enough. I need to get this brain/mouth connection sorted out. Fast!

 

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Walk This Way

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I visited my surrogate granddaughter in Arizona a few years back, when she was just learning to walk. She was so cute and so excited to be staggering from one solid point to grasp on to another solid point while everyone cheered her on. I was right there laughing and clapping along until I got up to use the restroom and realized I walked exactly like her. From the couch I grabbed the bookcase, then the wall, then the door frame. If there had been no solid surface, I would have thumped onto my ass just like her.

Lucky for her, she’s now as agile as a monkey. She leaps over chairs, climbs over couches, and skips and hops and somersaults her way through the house and her life.

Me on the other hand… I’m leaving handprints on all the door frames and walls of my house as my walking gets more jerky by the day. I’m leaving a trail of juice box drips on every available surface (except my sippy cup holds wine : – ) .

I’m not gonna lie (I love that expression ~ the converse being “I’m gonna lie”), I’m pretty sick of not being able to walk. The level of frustration is intense on the forefront, yet with a subtle and ever present “hallelujah, I least I can sorta of walk!” backdrop.

That’s a funny thing about MS (and I imagine all progressive conditions). Adapting and dealing with any kind of issues forces you to stare down the barrel of the obvious: it could be (and most likely will be) much worse. So you end up thankful that you can limp, hobble, stagger, mobilize in any goofy, not pretty fashion. Check me out! I didn’t face plant! I only knocked that plant to the floor when I crashed into the table and bruised my thigh. Win!

I end up feeling ungrateful and entitled when bemoaning the good ol’ days of hiking, dancing, standing, walking. Geez, what a spoiled brat! Oooohhh….you want your ability back? Don’t you realize other people have it worse? Reminds me of being told to eat your spinach ~ there’s children starving Africa.

This dilemma is one of those that never crossed my mind when I was more able. Why would it? I believe it is reserved for the chronically challenged (albeit available to all, given pause) and ultimately hard to come to terms with. Be that as it may, I’m mad/happy/pissed/joyous/resolved/terrified that I can move from room to room with my walker. You know, learn to walk before you crawl.

 

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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’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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Why Not Me?

Anybody who follows this blog knows that I do my best to stay positive. I have an amazing life ~ great family, supportive friends, financial security, a lovely home…and the motto I stay true to is “why not me?

I’ll explain. It’s no secret that I find wallowing in self pity unacceptable. Shit happens to all of us (it’s called the gift of life!) which is where my stance on “why me?” comes from. “Why not me?” I say. Would you wish your cancer diagnosis on your best friend? Of course not. Would you be happier if your sister had MS? Of course not. Buck up and own it, I say.

We all are familiar with waking in the night and worrying about the pipes bursting, the kids falling into a ravine, the Visa police showing up at work to shame you for your credit limit excess, your dentist calling you out for only flossing every other day. Of course these things don’t happen. But if they did, you might be thinking, “why me?”. Well duh. Floss your teeth, check your pipes, pay your Visa bill, teach your kids the dangers of ravines. We all must take responsibility for our own actions.

But when the universe throws you something out of your control (i.e. MS) it’s easy to fall into a state of self pity. I get it! And I am totally accepting that for whatever reason, I pulled an MS lottery card. It stinks, but as trite as it sounds, it is what it is.

Ok, so obviously I’m a super evolved, rational and gentle saint. Tonight however, I am fucking mad at MS. I want my “old” life back. I want to get out of the car and run inside for a second. I want to walk around the block. I want to bend down and pick something up without falling over. Hell, I want to just walk to the kitchen without holding on to anything. I want to not be hot, tired, dizzy, addled. I want to not have everything be such a big deal. It’s exhausting on top of being exhausting.

I find though that as much as I rail against it, curse at it, try to stomp my feet (no can do without falling over) at it, scream and cry at it, it remains the same. Yes I’m mad, and yes I’m frustrated…but would I wish on you? Not in a million years. You have your own burdens to bear. This one is all mine.

 

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Thanks For The Memories

I find it hard to believe, that even though I’m pushing 57, the memory banks are completely full yet. This leads me to think that the lapses that I’m now discovering daily might actually be linked to the MS. Rather than there being no more room,  I visualize my foggy brain unable to keep thoughts contained and the mesh of my cranium like a sieve, letting things seep out as deemed unnecessary.

Question to self: just what is the criteria to remaining “necessary”? Are there parameters for keeping one memory and letting another one ooze out? Case in point ~ I woke up from a dead sleep the other morning singing Peace Train by Cat Stevens, yet could not remember reading a super fun story with Elizabeth the week before. I mean Cat Stevens (now Yusuf Islam) recorded that song in 1971 and I’m pretty sure it’s been close to that long ago since I heard it. And Peace Train? Give me a break. Moonshadow probably would have made more sense. No, wait, it would not have. Brain ~ can we just let Cat Stevens go altogether, please?

It’s alarming to try to put my finger on a word or phrase to use in a sentence and have it just edging about the periphery. Sure, this happens to me too!, you’re thinking. But I don’t mean things like I read a “laudatory blurb about laudanum”. I”m talking about words like “required”, and “graham crackers”. Everyday, simple things.

The girl’s paternal grandmother suffered short term memory loss as she grew older. As she lived some distance away, they only saw her every few months. These short visits were always packed for her though, since every time the girls would leave the room and come back in she’d be super excited to see them again, like they’d been gone for ages. Elizabeth of course took full advantage of this, thereby deeming herself a genius in her Grandma’s eyes by correctly guessing that the Giants were probably going to smack one outta the park in the 9th for the win. Again.

Like most things related to MS, I find myself somewhat addled and vaguely amused by what is going on with my body and mind.  I feel this kind of memory loss may come in handy for me when reading favorite books or watching favorite movies. If only I could remember what they were…

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