Lumps and Grinds

I am generally a pretty sunny person, and don’t like to spend a bunch of time lamenting my lot in life. Overall my lot includes beautiful children, an amazing and loving family, fantastic friends and the gift of a sense of humor (thanks, Mom). But every now and again, something just pisses me off, so allow me this rant.

Eleven years ago, when I was first diagnosed with MS, there were 3 therapies available commonly referred to as the ABC drugs: Avonex, Betaseron and Copaxone. The choices between them were wonderful: weekly injections or every other day injections or daily injections. Golly – how to choose? The first two apparently can cause such bad flu-like symptoms that after injecting, you can be down for the count for days. You’re kidding me, right? I didn’t think that was my best choice. But a daily injection? Ugh.

Fortunately, (I use the term rather tongue in cheek here…) Liza was giving herself up to 6 million insulin injections per day for her diabetes, so I was chagrined at what a pussy I was being; and we were also rich in sharpies disposal containers.

During this time we also had a cat named Lila (sister of the demon Cleo) who got sick and the vet informed me the she would require daily injections. I didn’t think so. She got exactly ONE if you take my meaning….

Anyways….so I chose the daily injectable of Copaxone, as the side effects seemed minimal. My doctor at that time was a Dr. K who worked at USC. He had been one of the early champions of Copaxone (I believe he was one of the developers of it (certainly he spearheaded up clinical trials of it) so he of course agreed with my choice. (Dr. K was great ~ he once told me after seeing my MRI that yes, in fact, I had brain rot. We shared a similar sense of humor…).

When you begin a new therapy that costs over $4,000 per month, it comes with a nurse who makes a house call. She showed me how to wash my hands, open an alcohol swab and how to mix the alchemy that was my shot. When I started this therapy, I used to have to mix up my own potion. I had little vials of stuff that I’d measure out and swirl around until the concoction was ready, and then I’d draw up my own syringe. Egad. It was like high school chemistry all over again. Oddly enough, I flew overseas one time with this make shift lab in my carry on, and nary a word was spoken through security. Must have been pre-Sept 11.

The nurse showed up with support materials: a little stick figure picture detailing the 7 points of entry: left arm, right arm, left thigh, right thigh, left hip, right hip, belly; a little calendar to put on the refrigerator to remind me of which location on which day; and an 800 number for support.

All good, let’s go. I took the first shot in my right arm. H-O-L-Y F-U-C-K. Big giant alligator tears streamed down my face ~ it HURT. In trying to describe it later to my sister I called it Bruise Juice. There was no other way to describe it. You know how when you’ve bruised yourself and you inadvertently lean on the bruise you get a very distinct and unique wave of pain that spreads up to your ears? Imagine, if possible, that feeling being injected into your body. It was the worst.

The capacity of the human body to adapt is nothing short of amazing. In a relatively short period of time the bruise juice feeling subsided, I scrapped the support items and I was jabbing away like an old pro. My daily grind, day in and day out. And then, about 3,500 shots into it, a new phenomenon set in. Scar tissue. I guess it’s inevitable that you just can’t keep stabbing ourself over and over and expect the tissue to remain soft and supple, but it got so hard the needle could no longer penetrate. And I got dents. Dents in my arms, thighs, hips and belly.

Since no piece of cake is complete without a cherry on top, I added menopause into this olio of battered flesh. This change in hormones almost always includes a healthy helping of unanticipated and rapid weight gain, particularly in the middle. I am no exception. So here I am: a pair of skinny legs with dented thighs; a set of skinny arms (I don’t even have flapping underarms) also deeply dented; some good cratered curves on top and a nice comfy and lumpy belly. Pretty.

Now that you have that fabulous imagine seared into your mind, let me explain the reason for the rant. I stopped injecting in the legs and arms as they don’t have the…let’s call it the traction, that the hips and belly do. Now I’m down to 3 locations and they have taken the brunt of the over 4,000 shots I’ve given myself over the last 11 years. This hardly seems fair, so the other day I decided to give the leg a shot. It got all swollen and creepy and I had to run over to a friend who’s a doctor to look at it and then ice it for an hour. So, next up, I tried the arm. Son of a gun if that old Bruise Juice feeling didn’t come burning back through, AND I couldn’t lift my arm for 3 hours.

That is what pissed me off and prompted this rant. We all have to take our lumps in life and I know it as well as anyone, but sometimes it feels really good to just get mad and vent. I feel better now, so I’m going to go back to Googling the new oral meds that are coming out ~ I hope to heaven they are not Bruise Juice pills.

When The Fat Lady Sings

Years ago, when Elizabeth was first diagnosed with type 1 diabetes, I was working for the magazines that at that time were owned by a big B2B corporate publishing firm based in Overland Park, KS.

Liza’s diagnosis was awful. I was at the National Association of Broadcasters convention in Las Vegas when her dad called me with the news. He had flown home from the same convention to take her to her doctors appointment and had called me with the conclusion. I had assumed (ah, denial) that her mood swings, hallucinations and legendary tantrums were just growing pains (really, Erika?) and I was devastated, guilty and totally freaked by the diagnosis. My poor girl…what awful parents…how did we not know?…what kind of genes did we pass on to this lovely baby child!?

In a complete daze, I immediately went and located my wonderful and extremely capable friend B, who escorted me out of the convention hall, took me to my hotel, got me packed, bullied us to the front of the taxi line (which was about a mile long, or so it seemed), and commandeered me onto the plane, all the while with love and assurances. Bless her heart forever, she got me through that day and kept me from crumbling.

Fast forward through lots of fear, false alarms, understandable miscommunications and drama (not to mention the angst, distress and dismay her poor sister went through). Eventually we learned to accept and cope with this new unwelcome member of our family.

Like most new regiments that need to be adopted, I was determined to serve daily meals that were nutritional, balanced and imaginative. Glucose, carbohydrates, whole grains, sugars, lean proteins, low fat dairy ~ I was on it. X % of this, X % of that. Blood testing 6x per day. Bedtime balanced long lasting carbs and midnight monitoring. Egads. Sometimes I wonder how we ever survived. Liza still to this day laughs at the Kellogg’s commercial breakfasts I used to cram down her throat.

Imagine then my delight and surprise, as I was running out of fabulous Betty Crocker meal recipes, to find that my company had actually published a JDRF cook book! No way! This was too good to be true. It contained recipes from all our various offices from Kansas City to San Francisco to Stamford. Sweet! Serendipity, to be sure.

I ordered one immediately. All funds to the JDRF, check. Meals from friends and co-workers, check. Support of my corporation’s philanthropy, check. I couldn’t wait for it to arrive and to dive in to all the creative diabetic meal plans!

Well. The first recipe I looked at included Kraft Old English cheese, tater tots, butter and some green beans. The next one was blue cheese, tater tots, butter and a hamburger patty. Sausage, cheese, onion rings and bread crumbs. Broccoli, butter, eggs and Velveeta. Oreos, marshmallow sauce and Hershey’s chocolate sauce. What the hell?

There was one recipe for sautéed ahi tuna in ginger sauce which, not surprisingly, was from my office in the SF Bay area; and one for fresh crab cakes baked and served with fresh arugula salad from the Stamford office. The majority, however were submitted from the Overland Park office and in particular, by one lady named Dorothy.

After spending a few days processing this cookbook, I happened to be on the phone with one of the IT guys in the Overland Park office and I asked him about this woman, Dorothy. Just what was she like? Obviously she liked to cook…so?

His response was that she was a nice lady, worked in accounting or something, and that she was a big woman ~ maybe 315 or 320 pounds. Holy cow! Although I can’t say I was surprised after all those recipes of cheese and tater tots. It was only after I’d hung up with him, that I was really taken aback for a second….how on earth does one know the difference between 315 and 320 pounds?

Woody and Hannibal…When Worlds Don’t Collide…

Woke up early. Got ready for the MRI. Alec picked me up and we drove up north and found a coffee shop. Nice hot coffee, one single donut hole to cushion the hastily swallowed Ativan pill, and off to the lab. Fill this out, answer these questions, sign here.

Standing on the defense of a case of first rate denial, I plead absolute negligence in finding out before hand what my portion of the costs would be.  I got the procedure codes from the desk administrator and gave the ‘ol insurance company a call. When all was said and done, my out of pocket expense was going to be upwards of $800. I don’t think so.

This is not a critical procedure to my MS. It was recommended by a doctor who suggested that as my insurance would be running out soon, and I’d had some flare ups last fall, it might be a really good idea to get them done. I begrudgingly agreed with her and hence today’s scheduled appointment. But $780!? Nuh uh. No way. I just can’t afford that!

Nothing motivates me faster than not being able to accomplish something, even something as simple as not getting a dreaded MRI because I can’t afford the co-pay. Watch out world. Once this Atavin wears off ~ as my brother always says~ I’ll be Back, I’ll be Bold and I’ll be Bad!

Woody Woodpecker Meets Hannibal Lecter

I’m feeling very anxious, because tomorrow I go for another dreaded MRI. I think this is probably my 4th or 5th time. The neurologist I met with at the University of Arizona hospital recommended having another one based on the exacerbations I had last fall and before my insurance runs out. I know she’s right, but ugh. I don’t like them.

I am having my brain, thoraxic spine and spine all viewed. Although it is not invasive like a surgical procedure, it is the most intimate encounter with your insides that can be done without using a knife. For those of you who have never experienced this particular procedure it goes like this: you arrive showered and wearing no jewelry or hair product or deodorant, then  gowned and put onto a stretcher type apparatus (a gurney? A bed? A table?). You are then injected with dye. In order to maintain total stillness, your neck is stabilized with a collar type thing and then a Hannibal Lecter type mask is placed on your face and you are fed into a giant, scary tube into a machine.

Sound fun? Now you are told to just breathe deeply and stay calm. Oh sure. What the fuck!? Get me out of here!! Breathe. Breathe. Breathe. Phewww. Ok. Once inside the tube, these mechanical noises from the Alien movie start engaging, and then this knocking sound starts like Woody Woodpecker is circling your head and pecking and looking for the best cranial opening he can find. No wonder I feel like I’m going nuts!

The whole thing takes over 2 hours. That’s right, 2 hours. I take music and headphones, my teddy bear Eustace, and this time 2 valium. I’m not scared of MRIs anymore, but I can’t say I’m looking forward to it. Damn, I hate MS.


Important Papers

My father, Erik, was a construction engineer. He was the kind of Dad that went off to work in the morning with a big leather briefcase filled with papers to some mysterious office somewhere (there was no “take your daughter to work day” back then) and then showed back up at 6 or so for cocktails and dinner.  Next day, same ritual until the weekend which generally included yard work, a SF Giants ball game on the radio and a BBQ.

These were the 1960s, back when the 3 television networks signed off  each night and a good neighborhood game of kick-the-can could last until 10 p.m. Without sounding like one of those internet pass along ‘remember when’ emails, these were good times that required good old fashioned energy and imagination for fun.

Dad’s mysterious briefcase contained some exotic items to our young minds, including carbon paper, change order forms in triplicate and check requests. The advent of computers has made all of these hands on items obsolete, but they held a magic to my sister and me of how grown ups moved in the world ~ a step up from nursing and bandaging our poor stuffed animals imagined wounds (we traveled to Europe as kids on an airplane and so ministered to Tigger and Hippo with packaged mustard samples – very new age, albeit quite messy).

As Lisa and I elevated our play standards from (oh, so childish) nursemaids to (oh, so grown up) business women, our props necessarily needed to change. Dad thankfully obliged with some items from The Briefcase. With such a juicy selection of forms available to us, no doubt our favorite was the bid sheet pad. Basically, it was a paper version of an excel spread sheet.

We invented a game called Important Papers and it went like this: we would take turns sitting across from one another with the pad in front of us. Whoever had the pad would ask the other one Important Questions (like what? I have no idea) and then duly note the answers in the columns of the sheet. All Very Important.

We played this game endlessly. We loved being the Important One. As we really did grow up, both Lisa and I came to realize that much of life mirrored our game. A trip to the DMV, a job review, an application for a home loan or a social security disability claim often seems like just one big game of Important Papers. There so often is someone in ‘authority’ asking inane questions, making notes on a random form and thereby stipulating your future.

It makes me wonder. Although the medium has changed from paper to electronic bits, our world still seems to consist of endless games of Important Papers and briefcases filled with grown up and magical papers. Makes me want to go out and play kick-the-can with my pals, because in the end, the weekend is still yard work, baseball on the radio, and a BBQ.

Holy Mackerel

It took me over a week, but with the help of a new friend I was able to change my blog tag line to read “54 year old Erika…” Holy mackerel ~ 54? How on earth did that happen? I contemplated making myself a mackerel cake, but fortunately went to visit the family and got a slice of the legendary Hagberg Birthday Cake instead.

Mom started making this cake when we were kids. It has been served at every Hagberg birthday since probably the 1960s ~ except at my house. I just never got into making it ~ not that I didn’t like chocolate enhanced whipped cream with dark chocolate nuggets swirled throughout a chocolate cake. Quite the contrary. I just never thought about it.

I have been ribbed, teased and vaguely tormented by children, siblings, my mother, friends, and even my ex-husband for not trotting out the HBC over the years. I’m considered a renegade traitor to the family legacy. Honestly, it’s just a cake! But not so. It’s more a tradition of our love of food, humor and one another that I’ve been rejecting.

In retrospect, having denied by children the annual HBC, I guess I don’t deserve HBC or even a mackerel cake, I deserve to just eat some cake made out of crow.

 

What the Hell?

Sigh. According to NOAA it’s going to be 102 degrees today. And 107 degrees tomorrow. Really? Pure hell. My fellow MS-ers out there know what that means. Everything that is twitchy, painful, exhausting, numb, jumpy, gimpy, burning or just plain off ~ is about to get worse.

For the most part, I put myself under house arrest and do not go outside. This sounds like a perfect opportunity then to do laundry, pay bills, clean the kitchen, vacuum, go through closets, etc. Not so. Despite an air conditioner that goes up to a Stun setting, the heat permeates the psyche in mysterious ways that deem book reading a major activity. Fortunately, my friends gave me some books to read last night, I have some cold watermelon in the refrigerator, and a house full of many, and very, patient dust bunnies.

I went up to Seattle last month to visit my sister, brother in law and nephews. My sister, as I’ve mentioned before, is an amazing athlete. She runs, rows, does yoga, bikes… all while raising two incredible and active young men, working full time, running a gourmet kitchen and helping her husband start a new venture. She is basically fabulous (and today’s her birthday ~ happy day, Lisa!).

Lisa works out with a trainer in Seattle named Michael. Michael is 1) gorgeous 2) patient 3) knowledgeable 4) kind 5) see #1. As a birthday gift to me, Lisa gave me a session with Michael at his gym (where I’ve discovered my sister is some what of an icon ~ all the women aspire to be as strong as she is). Michael gave me a wonderful series of exercises using bands, light weights, balls and straps. I came home all gung-ho and worked out every day ~ balance was better, the hirple eased up, I slept better. Then…a trip to California, so I missed 5 days….now it’s as hot as hell here, and a workout consists of lifting the lever to turn the A/C up. This is not good.

Writing this is confirming my evolution of morphing into a slug. As much as I may not like the whole bathing suit thing I am going to go right now and head over to the pool for some water jogging. I can see Lisa waving at me and giving me a high five ~ that’s all the encouragement I need. Thanks, sis!

Ah Guano, Get Outta Here

The reminiscence of the Metallic trip got me thinking about some other memorable experiences in this rich, checkered life that I’ve lived to date. There was this one time…

Austin, Texas during the SXSW music conference. It was April and HOT in Austin. Texas hot and sticky. By some miracle or SNAFU, we were booked at the Ritz Carlton hotel for our stay. It was very swanky and very proper. I was only in for the one night so had a quick overnight bag with a change of clothes, a toothbrush, some Copaxone and that’s about it.

After a day of running around Austin in the million degree heat, I had one major mission at the end of the day, a glass of wine. (If it hasn’t been clear before, let me state now that I am a complete wino. I can walk away from beer, whiskey, tequila, gin, brandy, etc., but I love my nightly glass or two of wine). So I headed to the bar, get a nice glass of Pinot Noir and headed outside to cool off and see the sunset.

Austin, as it turns out, is famous for bats. LOTS of bats. Most specifically, they dart out from under the Congress Street bridge at a precise time every night and bat watching is a local past time. The Ritz even has it’s own bat-watching dock! At about 8:05 that night, 1.5 million Mexican bats shot out from under the bridge as if shot from a fire hose and headed off into the evening sky like black clouds ~ really something amazing to see.

Prior to the migration however, I found a bunch of my buddies, clients and co-workers on the bat-watching platform of the Ritz by the side of the river, preparing for the show. It being really, really hot, I made one of the stupider dares of my life. If Mr. No-Fun Guy that was hanging around (I assumed he was a client, or at the very least, a prospect) would take off his shoes and socks (which we all had done, but he would not), I would jump in the river. In my defense, I was hot! The river looked enchanting, refreshing and cool.

Son of a gun, he took off his shoes! A bet’s a bet, so in I went. It was cool, alright. It was also about 100 yards from the underside of the Congress Street bridge which was inhabited by 1.5 million bats…..OMG. I found myself thigh deep in 3 feet of guano slime. Gross…gross….GROSS!

I hauled myself back out onto the dock. We all watched the bats sail by the thousands and thousands into the fading sky. It was magnificent and memorable. I was a mess. Next stop was definitely back into my room for a shower and a change into some fresh clothes.

Tiny problem. The only way back in was through the lounge, the bar and the lobby. This being the Ritz Carlton and Texas, of course there was some sort of formal wedding or cotillion going on and the lobby and lounge were filled with women in fancy voile, tulle, satin and Chantilly lace dresses, replete with matching shoes, bags and wraps. Egad. I was a stinking, seeping, oozing creature from the black lagoon, with a wine glass in my hand, parading right through their midst.

I slithered to the elevator, up to my room and into the shower. I put the offending items into a hotel laundry bag, and tucked it in my suitcase to be cleaned upon arrival home (needless to say, they were beyond saving and had to be thrown out ~ that’s how nasty they were!).

Whew. What an ordeal. Too funny in retrospect, my friends had a laugh, I had a laugh, we chalked it off to Erika’s antics. Then my friend Phil sent me an email. How charming! He had the whole thing on video tape, and turns out his SOB friend (the guy with the shoes) had only pretended to take them off, and the dare was bogus. And he was neither a client nor a prospect.

Right then and there I vowed to behave from that point forward. Ok, just kidding.

Trials and Tribulations

There isn’t anyone, anywhere that would argue that swimming and pool exercises are probably good for someone with MS. The gentle support of the water, the cooling effect on a hot day, all the ducks are in a row. I discovered something though ~ I don’t really like being in the water.

There are several reasons. If I even so much at put my toe in the water, I get water in my ears for 12 hours which is extremely annoying.  Since I can’t work out like the old days; am turning 54 in a few weeks; and have no plans to give up wine, my body doesn’t look so hot in a bathing suit anymore. I don’t like squeezing my substantial bits into some tight rouched (read slimming) slice of spandex. And then there is the hideous sensation of peeling the thing off post swim ~ yuck.

Also high on the list is the whole shaving thing. I’ve never actually met a woman who enjoys shaving, but it is another one of those seemingly no brainer tasks that becomes quite challenging with MS.

I assume I can thank my Scandinavian heritage for the fact that I am pelted like Sasquatch. The fact that I am single and unemployed, precludes the outlay of cash for waxing. The nether regions are safe from view with the exception of the rare occasion when I actually do don the tortuous bathing suit, and of course I live in shorts because I live in the desert. Consequently, I need to tackle the project of shaving at least once per week.

Oh sure, big deal. Lather up, scrape it off, have a Pepsi. Not so. I’m constantly thinking up clever ways to get the task accomplished. I swing one leg up and hang on to the shower bar with a death grip until I start to fall over. I just lean down like the old days and get so dizzy I think I’m going to pass out. I sit on the toilet and put a towel down on the floor. The best practice seems to be to go outside (this is when I’m thankful it’s a zillion degrees here), pull up a chair, a razor, some cream and the garden hose. Oh sure, the cold water sends my legs into fits of spasticity, but the net result is doubled: freshly shaven legs and a freshly watered garden.

Now, that is multitasking!

3M, or Almost Famous: Part 2

3M: Menopause, MS and Metallica

Day 2 of our trip to Kansas City and hanging with my new best friends, Metallica. All our Bowie buddies had left the building and were on to the next stop on their itinerary. As I recall we didn’t do anything much that day prior to the show that night (CP if you’re reading this chime in anytime with your memories of this fun adventure!).

The relationship between Menopause and MS is a contentious one. Menopause initally calls the shots with a prickly heat or an out and out hot flash and that pisses MS off. MS in turn shows Menopause who’s boss by refusing to balance, walk straight or have strong muscles. This bratty behavior back and forth has gone on with me for years ~ I think I had my first hot flash back in 2002 and I’m STILL having them. Geez, can’t we all just get along? Apparently not, as was proven that night.

As was befitting ‘Friends Of The Band’, RT had procured amazing seats for us very far down and close to the stage. Our ‘almost famous’ status followed us as RT winked at CP from the stage and the people around us, who were winners of radio contest seats, looked at her like they wanted her to call them “Love”.

Seven years ago I was still mainly symptom free of MS. I avoided heat which caused everything to wobble a bit and I did have to sit more often than stand. Then there were always those pesky stairs.

So we’re sitting way down front in this older arena. I mention the age as the stairs were very steep and there was no railing (no ADA retrofitting here yet). CP and her boyfriend were very helpful in getting me settled in my seat. Adding insult to injury to this whole thing, I tend to be claustrophobic in crowded places without a direct and easy access out.

Of course, since my MS has been exacerbated by the stairs and the claustrophobia, Menopause decides to join the party with a vengeance. The show starts with some super loud, hard driving ROCK ‘N ROLL. The fans are going nuts, screaming and yelling. I’m sweating like a hog with it’s hair on fire. I’m feeling claustrophobic and trapped because how on earth am I going to get back up those stairs? And then…from 10 feet away, big columns of flames start shooting out of the stage in this huge extravaganza of pyrotechnics. Oh boy.

That does it. I crawl up the stairs back to the concession level where I sit out the entire show on the hard concrete floor. CP comes up to check on me now and again and I assure her I can hear the show just fine from this level. I confess. At this point I hate anything that has to do with the Metallica. I could care less about David Bowie. All I can do is wish for it to be over so I can get the hell out of there and back to civilization. A soft pillow. A good book. Silence.

I’d never thought I was really cut out to be Almost Famous and this proved it for me. Don’t get me wrong ~ we had a blast. Our night went on from there and this time included even more members of this iconic band and some glimpses of the types of behavior I’d been anticipating. Overall the entire weekend was sensational, and certainly one of my fondest rock ‘n roll memories. CP and CMcF were the perfect companions for this capriciousness and I’ll always be grateful to them for including me.

Since then though, no more Metallica for me. I wish I could just as easily turn off the other 2 Ms!